Let me tell you about my Saturday.
I was up early with the boys. Jim had been up early all week as I grappled with the pain and discomfort. Saturday, like everyday, we were up by 6:30 and had breakfast and played out back. Jim and Miles biked to Miles' preschool's family work day to play and clean up the playground. Ian and I napped and cleaned up the house.
When Miles and Jim returned, Miles and I had an outing to Kettler to see a Capitals training camp practice. On the way back into the city, we stopped at the Italian Store for a picnic with Jim and Ian. Uh oh, my radiation oncologist is calling. He lets me know the skin culture from last week came back positive. He said it might be a false positive and he needed to decide if it was and whether to put me on an antibiotic. I gave him my observations - less discharge and weeping, more crusty, less painful but more area covered. I thought it was healing, if slowly. He said he'd call me back.
When he called me back, he recommended I go into the ER to have the emergency medicine doctors look at the skin and give their opinion. Fine, cancel picnic. Drop Miles and lunch off at the park with Jim and Ian. Drive to Georgetown and join land of misfit toys in ER waiting room on Saturday afternoon.
On a positive note, he did say he had reviewed my radiation plan and total dosage (or whatever it is) and that he wanted me to stop radiation at twenty-six. So, I was a little confused, done with radiation but on my way to the emergency room.
Over the next three hours, I was seen, blood drawn, prepared for an IV (no small thing given my veins post-chemo), and told that I likely had a serious skin infection that might have spread to my blood and that the range of options were: go home with antibiotic (unlikely); stay for several nights with an IV antibiotic (likely); or stay for surgery to remove moisture from infected wound sites (possible). So much for my Italian Store sandwich waiting patiently in my bag. No food or drink until surgery had been ruled out.
Happily, in hour four, residents from my plastic surgeon and breast surgeon appeared for a consult. My trip to the ER may have ruined their Saturdays, but it salvaged mine. They breezed in, looked at the wet wound sites, took some pictures for the attending physicians and were plainly unimpressed. Five minutes later the plastics resident was back. Skin cultures likely a false positive. Wound site and discharge the by-product of the radiation burn. No infection. (Unless I picked one up on my trip to the
ER - I added silently.). Just keep a close eye on them - (just as I had been , I added silently).
An hour or so later, my radiation oncologist appeared and confirmed what I had heard. It seemed likely a false positive. There were no clinical signs of infection. They could now start to treat the wound sites more aggressively since radiation was complete (the materials in the wound dressing block the radiation). Twenty-five to thirty is the normal radiation sessions recommendation for my diagnosis, so I was within the standard of care norms, I could go home. With burn cream and with fairly strict "call immediately" if anything changed instructions.
I called Mom, who jumped in to watch the kids for dinner and bedtime so Jim could join me, to update her. "Don't worry, Mom. It wasn't anything. They concluded I'm burned from radiation." Her response "no shit". Having spent the past two weeks talking about nothing but my skin itch, ointments, rashes and ooze, I sort of agree. Burned? No shit.
So a whole lot for naught. But we are glad for it. I felt like I'd been treating this wound somewhat blindly and this process got everyone in the room at the same time looking at the same thing.
And so, I'm done. Done with chemo. Done with the primary (though more to come) surgery. Done with radiation. A little bit of skin care follow up. And assuming the skin cooperates, still lots of appointments to go. Plastic surgery every week for the next few months. More with the radiation oncologist this week. My primary oncologist in two weeks.
I feel good. Yesterday, alone in the car, warm and sunny outside, I cruised over to Georgetown, music blaring and thinking 'you've got the wrong girl.' Not me, I'm not sick anymore. When the ER conspired against me and told me of all the likely outcomes, I was frustrated but not despairing. I really feel like my turn on this carousel is up. Thank you for all of the grief, richness, hardships, small wonders and beauty in moments I would have never seen. I will never forget these lessons. But I'm over this cancer nonsense. Yesterday and going forward, you've got the wrong girl.
Sunday, September 21, 2014
Friday, September 19, 2014
Still holding
No update except that the skin is healing. At the slowest possible rate of speed imaginable. Which just means that I still can't rest my right arm down along my right side. I sleep with it over my head. I walk with it away from my body. I sit with it draped along the back of the chair. It doesn't fall properly and it doesn't raise properly. A fairly uncomfortable 8 or so days.
Doctor took a looksee on Thursday and agreed it was way too burned for radiation. I blamed him for my eye, too. He seemed disinclined to conclude that the eye was the result of radiation. Come back Monday he recommended. I'm happy for the break. I'm happy to hope that I've been through the worse of the burn (my back, my front, my armpit and my abdomen all have spots that are bleeding or oozing).
My eye is getting better with an antibiotic, from a different doctor, and warm compresses. Back to school night for Miles last night. Me politely distancing myself from fellow parents and would be huggers.
Doctor took a looksee on Thursday and agreed it was way too burned for radiation. I blamed him for my eye, too. He seemed disinclined to conclude that the eye was the result of radiation. Come back Monday he recommended. I'm happy for the break. I'm happy to hope that I've been through the worse of the burn (my back, my front, my armpit and my abdomen all have spots that are bleeding or oozing).
My eye is getting better with an antibiotic, from a different doctor, and warm compresses. Back to school night for Miles last night. Me politely distancing myself from fellow parents and would be huggers.
Tuesday, September 16, 2014
27 and 28
On Friday, I met with my doctor. He looked over my skin and recommended I take another break to let it heal. I'd been using a potion of lidacain and lotion and was managing the discomfort fairly well. I ambitiously asked to finish up my treatment on Saturday and Sunday to get it over with.
Ha. I failed to appreciate that my skin was going to worsen over the weekend. I went from tight, burned, prickles (think hair shirt) to large, oozing wounds and insatiable itch. My skins feels like there are a thousand shards of glass just under the surface and it simultaneous hurts and itches.
By Sunday night, I knew I need some medication and help with the skin. Monday, I traipsed back to the doctor for a narcotic for the pain and some case management for the oozing wounds. My last two treatments were postponed for some time to heal.
By this morning, it was like all of my systems collapsed. I woke up with a migraine, terrible nausea, a sore throat and one eye sealed shut from pink eye or something like it. Plus the burn pain. It would have been funny, except it wasn't. I could hardly have been in worse shape.
If you've never thrown up in front of a four year old, you should try it. Miles was practically crawling over me to get a view. He ended up jumping up to hang on the privacy wall by the toilet so that he could witness the spectacle. When he bored of it, he sat by the shower and put his shoes on for school. He recommended deep breaths and a sip of water and talked about the time he threw up on Daddy.
I'm going to credit his equanimity to my excellent parenting. I told this little boy I will be fine and he believes me. What's a little throw up and red, swollen eye and tender and oozing armpit to be concerned about? Have a good day at school.
So, radiation treatments 27 and 28 elude me. Maybe, Thursday and Friday. In the meantime, I am soaking the wounds to dry them out. I'm lotioning the rest of the skin to moisturize it. I'm taking pain medication for it all. I don't know what's going on with my eye. My migraine and nausea have passed.
On the positive side, I also met with another doctor on Monday to talk about my joint pain - mostly resolved - and lymphedema - no signs of it yet. So slightly overshadowed by the excitement of the past few days, but still good news.
It is so frustrating to be so close to closing this chapter of my life. I remember sitting in the surgeon's office in Fairfax a day or two after this news broke and her saying nine months. It will take nine months. Really a year (more surgeries, etc to go), but the hard work would take nine months. In life, a year can breeze by. This one hasn't. It has been awful, arduous, demanding and defeating at times.
Two radiation treatments to go.
Ha. I failed to appreciate that my skin was going to worsen over the weekend. I went from tight, burned, prickles (think hair shirt) to large, oozing wounds and insatiable itch. My skins feels like there are a thousand shards of glass just under the surface and it simultaneous hurts and itches.
By Sunday night, I knew I need some medication and help with the skin. Monday, I traipsed back to the doctor for a narcotic for the pain and some case management for the oozing wounds. My last two treatments were postponed for some time to heal.
By this morning, it was like all of my systems collapsed. I woke up with a migraine, terrible nausea, a sore throat and one eye sealed shut from pink eye or something like it. Plus the burn pain. It would have been funny, except it wasn't. I could hardly have been in worse shape.
If you've never thrown up in front of a four year old, you should try it. Miles was practically crawling over me to get a view. He ended up jumping up to hang on the privacy wall by the toilet so that he could witness the spectacle. When he bored of it, he sat by the shower and put his shoes on for school. He recommended deep breaths and a sip of water and talked about the time he threw up on Daddy.
I'm going to credit his equanimity to my excellent parenting. I told this little boy I will be fine and he believes me. What's a little throw up and red, swollen eye and tender and oozing armpit to be concerned about? Have a good day at school.
So, radiation treatments 27 and 28 elude me. Maybe, Thursday and Friday. In the meantime, I am soaking the wounds to dry them out. I'm lotioning the rest of the skin to moisturize it. I'm taking pain medication for it all. I don't know what's going on with my eye. My migraine and nausea have passed.
On the positive side, I also met with another doctor on Monday to talk about my joint pain - mostly resolved - and lymphedema - no signs of it yet. So slightly overshadowed by the excitement of the past few days, but still good news.
It is so frustrating to be so close to closing this chapter of my life. I remember sitting in the surgeon's office in Fairfax a day or two after this news broke and her saying nine months. It will take nine months. Really a year (more surgeries, etc to go), but the hard work would take nine months. In life, a year can breeze by. This one hasn't. It has been awful, arduous, demanding and defeating at times.
Two radiation treatments to go.
Sunday, September 7, 2014
Plain Weary
I am weary of radiation. I am actually just plain weary. Its September in Washington. Everyone is busy with back to school, events, birthdays, soccer teams, fall plans. And I am just plain weary. I'm trying to get organized for the fall. For the year. I'm ordering Christmas gifts. I'm getting the school schedule into my work calendar. I'm thinking about where we will spend the holidays and spring break.
I'm also busy at work. Struggling to get a full week and a half's worth of work into my days that end mid-afternoon before radiation. This week has early morning meetings at work and after work events, book club (for the first time ever I may not finish the book on time). Plus I'm trying to be back on my exercise schedule.
The weekend has been great, busy with the kids. Lots of playing, lots of giggling. Also lots of not listening, dirty diapers, dirty dishes, crumbs and messes everywhere.
Today I told Jim I could use a governess. She'd bring in the kids handsomely dressed and calm. They'd love and cuddle with me. And then retire to another part of the house for quiet play and learning. No shouting, no telling me I'm mean, no not listening, no crying for milk to be served in a bottle rather than a cup, no thrashing wildly against my so sore radiation red-self.
My skin is a mess. A mess. Beet red. Achey sore. I don't recall the chicken pox but this must be what its like. Maddening itch and ache and tenderness. My armpit feels like I used it to extinguish a match. My chest is distractingly red. It literally turns heads and generates questions about my sunburn. I'd ask, too. For anyone who is curious, the products I'm using are calendula cream and utterly smooth lotion. They help the skin. Ativan helps the mind game.
Ugh, this is mostly just a list of complaints. The weather is gorgeous. The boys threw rocks into Rock Creek today. It was just a beautiful moment. This handsome group of boys throwing rocks and splashing around - happy, present, silly.
Eight or nine treatments left. I can't wait, but I will wait. My skin is day by day, so my appointments are as well.
Another upside, I see the same radiation techs each time. I prefer the continuity of seeing the same folks unlike the rotating schedules of the chemo nurses. Talk about hard jobs. I asked one of the radiation techs what was the best thing about her job and she talked about the humility from seeing everyone who is affected by cancer. Cancer does not discriminate. Young, old, black, white, poor or no, boys and girls. It takes all comers.
I ran into a co-worker at radiation last week. I knew him. He didn't know me. I blundered through an introductory conversation, incapable of conceiving why he was in the waiting room. Incapable of appreciating the obvious. After apologizing for my lack of grace and sharing our stories, I find I am comforted by this companionship. It is nice to have a friend in the same head space.
Ian is so big. He runs. He laughs. He intermittently calls me Mama and Dada. He is discerning and dramatic. Do not give him food he doesn't want to eat. He will not just refuse to eat it. He will toss it off his tray, shake his head furiously and complain incoherently.
Miles is every bit of four. So silly, so expressive, so expansive, so contrary, so defiant. This week he refuses to eat last week's staples: fish, chicken, eggs, cheese. Everyday he exercises and experiments with new authority over his life. But still so sweet, gentle, considerate.
I'm also busy at work. Struggling to get a full week and a half's worth of work into my days that end mid-afternoon before radiation. This week has early morning meetings at work and after work events, book club (for the first time ever I may not finish the book on time). Plus I'm trying to be back on my exercise schedule.
The weekend has been great, busy with the kids. Lots of playing, lots of giggling. Also lots of not listening, dirty diapers, dirty dishes, crumbs and messes everywhere.
Today I told Jim I could use a governess. She'd bring in the kids handsomely dressed and calm. They'd love and cuddle with me. And then retire to another part of the house for quiet play and learning. No shouting, no telling me I'm mean, no not listening, no crying for milk to be served in a bottle rather than a cup, no thrashing wildly against my so sore radiation red-self.
My skin is a mess. A mess. Beet red. Achey sore. I don't recall the chicken pox but this must be what its like. Maddening itch and ache and tenderness. My armpit feels like I used it to extinguish a match. My chest is distractingly red. It literally turns heads and generates questions about my sunburn. I'd ask, too. For anyone who is curious, the products I'm using are calendula cream and utterly smooth lotion. They help the skin. Ativan helps the mind game.
Ugh, this is mostly just a list of complaints. The weather is gorgeous. The boys threw rocks into Rock Creek today. It was just a beautiful moment. This handsome group of boys throwing rocks and splashing around - happy, present, silly.
Eight or nine treatments left. I can't wait, but I will wait. My skin is day by day, so my appointments are as well.
Another upside, I see the same radiation techs each time. I prefer the continuity of seeing the same folks unlike the rotating schedules of the chemo nurses. Talk about hard jobs. I asked one of the radiation techs what was the best thing about her job and she talked about the humility from seeing everyone who is affected by cancer. Cancer does not discriminate. Young, old, black, white, poor or no, boys and girls. It takes all comers.
I ran into a co-worker at radiation last week. I knew him. He didn't know me. I blundered through an introductory conversation, incapable of conceiving why he was in the waiting room. Incapable of appreciating the obvious. After apologizing for my lack of grace and sharing our stories, I find I am comforted by this companionship. It is nice to have a friend in the same head space.
Ian is so big. He runs. He laughs. He intermittently calls me Mama and Dada. He is discerning and dramatic. Do not give him food he doesn't want to eat. He will not just refuse to eat it. He will toss it off his tray, shake his head furiously and complain incoherently.
Miles is every bit of four. So silly, so expressive, so expansive, so contrary, so defiant. This week he refuses to eat last week's staples: fish, chicken, eggs, cheese. Everyday he exercises and experiments with new authority over his life. But still so sweet, gentle, considerate.
Tuesday, August 12, 2014
It's just radiation
To a person, everyone says something to the effect of "well, it's just radiation." As in, it's easier than chemo. And it is. That doesn't mean I want to be doing it. That doesn't mean it's nice. Radiation is just as pernicious as chemo, but it's more subtle.
Five days a week trudging into the hospital. Not a fun place to visit everyday. It doesn't seem like a place for healing. It seems dirty. It's a fairly heavy-handed reminder "Kelly, you have cancer."
The experience of treatment itself feels like a scene from Star Wars. The Death Star with its super laser. The loud countdown noise. Me in a room by myself on a table with a clunky paneling shifting around my torso and blaring beeps and a red laser. Just radiation.
I had my blood pressure taken after treatment today and it was apparent there is some stress involved.
One week down. Five to go. My skin will suffer but it doesn't hurt yet. I feel fatigue but I think it is the result of my stress.
And how am I? I'm ok. You know. I'm managing. I heard something on the radio the other day that stuck with me. It was an interview of Tony Hale and he noted that he learned to practice contentedness in life - whatever the circumstances - so that when he achieved his goals, he would know how to be happy. I'm practicing this exercise. I am practicing being content now, so when this process is behind me, which is what I want, I will know how to be happy with my life whatever else comes.
Incidentally, my hair is so far from a cute pixie it's comical. It is starting to look like I am some crazy hair masochist who chose to chop all of her hair off. But hey, now people think I'm crazy and have bad taste but not cancer!
Five days a week trudging into the hospital. Not a fun place to visit everyday. It doesn't seem like a place for healing. It seems dirty. It's a fairly heavy-handed reminder "Kelly, you have cancer."
The experience of treatment itself feels like a scene from Star Wars. The Death Star with its super laser. The loud countdown noise. Me in a room by myself on a table with a clunky paneling shifting around my torso and blaring beeps and a red laser. Just radiation.
I had my blood pressure taken after treatment today and it was apparent there is some stress involved.
One week down. Five to go. My skin will suffer but it doesn't hurt yet. I feel fatigue but I think it is the result of my stress.
And how am I? I'm ok. You know. I'm managing. I heard something on the radio the other day that stuck with me. It was an interview of Tony Hale and he noted that he learned to practice contentedness in life - whatever the circumstances - so that when he achieved his goals, he would know how to be happy. I'm practicing this exercise. I am practicing being content now, so when this process is behind me, which is what I want, I will know how to be happy with my life whatever else comes.
Incidentally, my hair is so far from a cute pixie it's comical. It is starting to look like I am some crazy hair masochist who chose to chop all of her hair off. But hey, now people think I'm crazy and have bad taste but not cancer!
Tuesday, August 5, 2014
Radiation Eve
It isn't as exciting as Christmas Eve that's for sure.
The past two weeks have been, um, my favorite phrase, highly variable.
I was thrilled to return to work in the middle of July. I had this moment of pure happiness at my desk on Monday. It was so nice to be there, see my friends and coworkers and feel good. That thrill has been slightly diminished by the work load creeping back in but it still feels so good to be there.
I realized as I returned to work that I felt as good as I've felt since the start of my pregnancy with Ian - November 2012. It's been eighteen months since I've had my body to myself. Pregnancy, post-partem, chemo, surgery. It is nice to have myself back - such as it is. But it was also fleeting.
We had some challenges preparing for radiation. There was some miscommunication with the doctor and some disappointment as a result. The miscommunication wasn't a big deal, but it was an unpleasant jolt. A reminder, you aren't done yet, honey. Back into anonymous waiting rooms, delays, appointments and a cadre of medical professionals scrutinizing my breasts. Oh goodie.
Unrelated and yet totally related, I have had significant amounts of joint pain. I have difficultly walking after periods of inactivity. The mornings are the worst. I can hardly move my feet. My gait resembles an eighty year old's. After a clumsy fall that resulted in actual and ego bruises, I added a new physician to my repertoire. I don't actually know what he does, but we talked about how my body is working -mechanically - and how to tackle the various kinks in the systems.
I think that was really helpful. Also a little overwhelming. Double check that it isn't some rheumatoid arthritis, then if not add physical therapy, add joint supplement, ensure five days a week of exercise, wear a sleeve for the lymphademea. (In my head, I added... Plus radiation five days a week, plus working, plus my life and two young kids).
Somewhere in my draft last night I fell asleep. So, now it is actually the Christmas of radiation. It was a bit funny if I can laugh at myself and the ridiculousness of it.
I had a work offsite all day. Fortunately, it was in Georgetown. I slipped out of my meetings and over to the hospital midday. Radiation wasn't awful. Just a few minutes too long in an uncomfortable position, immodestly undressed in a room full of people. But because it was the first session, the radiation techs outlined the fields of radiation. And by that I mean, in marker all over my chest, side, armpit and neck. And then I got to go back to work. Still covered in traces of marker. This is how I know I'm growing and evolving. A year ago, this would have be untenable. Now, I tried to rub it off and then I got dressed and went back to work. What can you do but laugh. It couldn't have been that bad because Miles didn't remark about it when I got home from work - and he is exacting.
Speaking of the boys, Ian this precious sweet thing vexes me. He calls me dada. I say mama. He says dada. How could he know how to so effectively provoke me at such a young age?
And reporting back on a small step, Miles and I have spent in the past two Saturday mornings in the basement of a neighborhood church packaging groceries for delivery to families in need in DC.
The past two weeks have been, um, my favorite phrase, highly variable.
I was thrilled to return to work in the middle of July. I had this moment of pure happiness at my desk on Monday. It was so nice to be there, see my friends and coworkers and feel good. That thrill has been slightly diminished by the work load creeping back in but it still feels so good to be there.
I realized as I returned to work that I felt as good as I've felt since the start of my pregnancy with Ian - November 2012. It's been eighteen months since I've had my body to myself. Pregnancy, post-partem, chemo, surgery. It is nice to have myself back - such as it is. But it was also fleeting.
We had some challenges preparing for radiation. There was some miscommunication with the doctor and some disappointment as a result. The miscommunication wasn't a big deal, but it was an unpleasant jolt. A reminder, you aren't done yet, honey. Back into anonymous waiting rooms, delays, appointments and a cadre of medical professionals scrutinizing my breasts. Oh goodie.
Unrelated and yet totally related, I have had significant amounts of joint pain. I have difficultly walking after periods of inactivity. The mornings are the worst. I can hardly move my feet. My gait resembles an eighty year old's. After a clumsy fall that resulted in actual and ego bruises, I added a new physician to my repertoire. I don't actually know what he does, but we talked about how my body is working -mechanically - and how to tackle the various kinks in the systems.
I think that was really helpful. Also a little overwhelming. Double check that it isn't some rheumatoid arthritis, then if not add physical therapy, add joint supplement, ensure five days a week of exercise, wear a sleeve for the lymphademea. (In my head, I added... Plus radiation five days a week, plus working, plus my life and two young kids).
Somewhere in my draft last night I fell asleep. So, now it is actually the Christmas of radiation. It was a bit funny if I can laugh at myself and the ridiculousness of it.
I had a work offsite all day. Fortunately, it was in Georgetown. I slipped out of my meetings and over to the hospital midday. Radiation wasn't awful. Just a few minutes too long in an uncomfortable position, immodestly undressed in a room full of people. But because it was the first session, the radiation techs outlined the fields of radiation. And by that I mean, in marker all over my chest, side, armpit and neck. And then I got to go back to work. Still covered in traces of marker. This is how I know I'm growing and evolving. A year ago, this would have be untenable. Now, I tried to rub it off and then I got dressed and went back to work. What can you do but laugh. It couldn't have been that bad because Miles didn't remark about it when I got home from work - and he is exacting.
Speaking of the boys, Ian this precious sweet thing vexes me. He calls me dada. I say mama. He says dada. How could he know how to so effectively provoke me at such a young age?
And reporting back on a small step, Miles and I have spent in the past two Saturday mornings in the basement of a neighborhood church packaging groceries for delivery to families in need in DC.
Friday, August 1, 2014
Happy New Year
*I drafted and thought I posted this on July 15.*
I'm not sure what year it is in the Chinese calendar, but for me its been the year of the breast. From nursing to new, its sortof all I've done for twelve months. And what a year it has been.
Today is Ian's first birthday. Setting aside the realities of it - he has some virus and scary high fevers - it just feels like such an incredible accomplishment to celebrate. For Ian, for me, for our family.
We celebrated with Jim's family over Fourth of July weekend. We celebrated with my family this weekend. We celebrated quietly tonight with a few bites of ice cream. More soothing, rocking and crooning than singing.
My second and last baby turned one today. He walks. He talks. He plays. He has a laugh beyond compare. What a precious gift he is to me. And a baby no more.
I'm coming out of a weird place. Everyone who has supported me over the past seven months has been triumphant. The pathology report was amazing. I came through surgery just fine - I mean, I don't remember much of the last four weeks of my life - but that is apparently an acceptable detail of a successful surgery. Everyone is relieved and happy. Except me.
I'm trying to understand why I feel so differently than everyone around me. I guess grieving always takes longer than expected and I am still grieving.
I am still faced with the reality that Jim and I have a different future. At best, one that has a lot more fear. I am still trying to figure out what that means for how we live our day to day lives.
I am also cognizant of the fact that I want my life to be different. But I don't know how. As I continue to feel better, I'm feeling pressure to identify and act on the "how." I'm working to remind myself that I have six weeks of daily doses of radiation to round out my summer. I probably shouldn't worry about self-improvement just yet.
It was also pointed out to me that I don't even really know what it is like to have two kids yet. Ian was four months when I was diagnosed. Perhaps, I'll allow myself to finish my treatment program and live my new life before I decide how to change it.
I guess, I'm in a period of transition. In my treatment. In my thinking. But it does feel like Ian's birthday is a line of demarcation. Into the new year - a year of forward movement.
I'm not sure what year it is in the Chinese calendar, but for me its been the year of the breast. From nursing to new, its sortof all I've done for twelve months. And what a year it has been.
Today is Ian's first birthday. Setting aside the realities of it - he has some virus and scary high fevers - it just feels like such an incredible accomplishment to celebrate. For Ian, for me, for our family.
We celebrated with Jim's family over Fourth of July weekend. We celebrated with my family this weekend. We celebrated quietly tonight with a few bites of ice cream. More soothing, rocking and crooning than singing.
My second and last baby turned one today. He walks. He talks. He plays. He has a laugh beyond compare. What a precious gift he is to me. And a baby no more.
I'm coming out of a weird place. Everyone who has supported me over the past seven months has been triumphant. The pathology report was amazing. I came through surgery just fine - I mean, I don't remember much of the last four weeks of my life - but that is apparently an acceptable detail of a successful surgery. Everyone is relieved and happy. Except me.
I'm trying to understand why I feel so differently than everyone around me. I guess grieving always takes longer than expected and I am still grieving.
I am still faced with the reality that Jim and I have a different future. At best, one that has a lot more fear. I am still trying to figure out what that means for how we live our day to day lives.
I am also cognizant of the fact that I want my life to be different. But I don't know how. As I continue to feel better, I'm feeling pressure to identify and act on the "how." I'm working to remind myself that I have six weeks of daily doses of radiation to round out my summer. I probably shouldn't worry about self-improvement just yet.
It was also pointed out to me that I don't even really know what it is like to have two kids yet. Ian was four months when I was diagnosed. Perhaps, I'll allow myself to finish my treatment program and live my new life before I decide how to change it.
I guess, I'm in a period of transition. In my treatment. In my thinking. But it does feel like Ian's birthday is a line of demarcation. Into the new year - a year of forward movement.
Sunday, June 29, 2014
All about the cup
What a huge, awesome day of soccer.
It started with a walk to a neighborhood breakfast place. Eggs and lattes outside with two moderately well behaved boys. Jim, too. A stroll to the nearby park and an extended game of soccer with Miles' infant tactile ball which should really be Ian's now. To help that process, on the walk home, we stopped at Target and bought Miles his own soccer ball.
Scouts take note: he is a lefty. He understands trapping and place kicks and he is working on trapping high balls on his knees. Sometime between 9:30 when I bought the ball and 6:30 during the Greece/Costa Rico shoot out, I began to regret the purchase. My soccer buddy was now more interested in playing than watching. I mean, where was he when holland scored the tying goal? He was demoted to the sixth best World Cup watching companion. Just kidding he is the best. Particularly because Ian is more interested in the remote and trying to find the right button to turn off the tv. Oh, to be fair, Ian is also very interested in walking and is regularly taking two and three steps before he squats for the speedier crawling technique ( to get the remote, or your glass of wine, or eat your newspaper).
On the positives, I'm off the narcotics. I am driving a little (apparently directly related to the narcotics). On the realities, I still need help with the kids, especially Ian- I can't lift, change or wrestle him into compliance. I still need naps. I still have two medical drains and a lot of soreness. I can't lift my arms over my head. Not an everyday essential, but one I'm working on just the same...
More doctors appointments this week. More World Cup soccer. And maybe I'll teach Miles some header techniques.
It started with a walk to a neighborhood breakfast place. Eggs and lattes outside with two moderately well behaved boys. Jim, too. A stroll to the nearby park and an extended game of soccer with Miles' infant tactile ball which should really be Ian's now. To help that process, on the walk home, we stopped at Target and bought Miles his own soccer ball.
Scouts take note: he is a lefty. He understands trapping and place kicks and he is working on trapping high balls on his knees. Sometime between 9:30 when I bought the ball and 6:30 during the Greece/Costa Rico shoot out, I began to regret the purchase. My soccer buddy was now more interested in playing than watching. I mean, where was he when holland scored the tying goal? He was demoted to the sixth best World Cup watching companion. Just kidding he is the best. Particularly because Ian is more interested in the remote and trying to find the right button to turn off the tv. Oh, to be fair, Ian is also very interested in walking and is regularly taking two and three steps before he squats for the speedier crawling technique ( to get the remote, or your glass of wine, or eat your newspaper).
On the positives, I'm off the narcotics. I am driving a little (apparently directly related to the narcotics). On the realities, I still need help with the kids, especially Ian- I can't lift, change or wrestle him into compliance. I still need naps. I still have two medical drains and a lot of soreness. I can't lift my arms over my head. Not an everyday essential, but one I'm working on just the same...
More doctors appointments this week. More World Cup soccer. And maybe I'll teach Miles some header techniques.
Thursday, June 26, 2014
Burying the lead
First these small acts of kindness. Maybe they aren't even kindnesses but they are these nuanced moments that they make me hope I give them back to others in small ways, on routine days for the rest of my life. Of course, for me, these moments relate to the kids. Dehumanize me all you want, but make his Mom transcendent. What the heck am I talking about?
Since surgery, I'm not bothering with a wig. I wanted to throw them out. Jim counseled that I was being rash. Regardless, all I wear are jammies, I'm certainly not wearing a wig. I've got some scruff. It isn't Michelle Williams cute but it isn't scary patchy either. As I marched up to school pick up yesterday, I didn't realize I was setting myself up for a bit of a situation... Would they recognize me, know I was Miles Mom, would I have to approach and explain. Yikes, his current camp teacher breezed by me without a second glance. The delicacy of having to approach and explain all while obviously conveying nothing to Miles who is quite pleased with the summer growth. Then I got a quick and knowing double take. Bless her. One of his teachers from last year spotted me and hollered for Miles. Such a small moment but so important to me. It was repeated today - by his summer camp teacher from last year. I love alert people. People who are aware but have seen me in nothing but long blond hair (mine or otherwise) for two years and smoothly summoned Miles for pick-up. It protected my bunny.
Some other highlights: an am coffee klatch; an achey, breaky pedicure (I was achey, my friend not so lucky); Miles telling his teachers he was leaving school early so he could watch the whole World Cup game (this was more about coordinating a ride as I'm not driving, but why let the facts get in the way of a good World Cup story); gorgeous birds of paradise bouquets, fruit bouquets, more lounge wear than Mrs. Roper, round the clock care from Mom and then Maureen; miles telling me I'm the sixth best cuddler in the world. All charm that one. All Ian wants is to move and poke his elbows and knees into your abdomen. So we don't have a lot of quality time these days.
I still have a fair amount of pain and discomfort but I'm getting out of the house. I saw the surgeon today. I got two drains removed. And we reviewed the pathology report. Before surgery I asked her what would be a successful outcome from surgery. Her response was glib: a good cosmetic result and a clean pathology. Then she cautioned that was only likely in approximately 15-20 percent of patients. You know I have a little overachiever in me. Tissue and lymph nodes were all clear.
We look forward to more detailed discussions with our good doctor and the radiologist to understand if the news is as good as it sounds today and what our plan is for the rest of 2014. Thank you for carrying me along.
Since surgery, I'm not bothering with a wig. I wanted to throw them out. Jim counseled that I was being rash. Regardless, all I wear are jammies, I'm certainly not wearing a wig. I've got some scruff. It isn't Michelle Williams cute but it isn't scary patchy either. As I marched up to school pick up yesterday, I didn't realize I was setting myself up for a bit of a situation... Would they recognize me, know I was Miles Mom, would I have to approach and explain. Yikes, his current camp teacher breezed by me without a second glance. The delicacy of having to approach and explain all while obviously conveying nothing to Miles who is quite pleased with the summer growth. Then I got a quick and knowing double take. Bless her. One of his teachers from last year spotted me and hollered for Miles. Such a small moment but so important to me. It was repeated today - by his summer camp teacher from last year. I love alert people. People who are aware but have seen me in nothing but long blond hair (mine or otherwise) for two years and smoothly summoned Miles for pick-up. It protected my bunny.
Some other highlights: an am coffee klatch; an achey, breaky pedicure (I was achey, my friend not so lucky); Miles telling his teachers he was leaving school early so he could watch the whole World Cup game (this was more about coordinating a ride as I'm not driving, but why let the facts get in the way of a good World Cup story); gorgeous birds of paradise bouquets, fruit bouquets, more lounge wear than Mrs. Roper, round the clock care from Mom and then Maureen; miles telling me I'm the sixth best cuddler in the world. All charm that one. All Ian wants is to move and poke his elbows and knees into your abdomen. So we don't have a lot of quality time these days.
I still have a fair amount of pain and discomfort but I'm getting out of the house. I saw the surgeon today. I got two drains removed. And we reviewed the pathology report. Before surgery I asked her what would be a successful outcome from surgery. Her response was glib: a good cosmetic result and a clean pathology. Then she cautioned that was only likely in approximately 15-20 percent of patients. You know I have a little overachiever in me. Tissue and lymph nodes were all clear.
We look forward to more detailed discussions with our good doctor and the radiologist to understand if the news is as good as it sounds today and what our plan is for the rest of 2014. Thank you for carrying me along.
Tuesday, June 24, 2014
Achey update
Some parts ache. Some parts have searing pain. Some itch. Some are mostly numb. I have a bevy of cocktails to address the various symptoms.
For the first few days, I slept about fifteen minutes about every hour. The dreams were vivid and disjointed. Today, I slept nearly the whole day after throwing up for the first time since diagnosis. I think that was drugs without food. My appetite has been low and that slowed my pill intake.
I move about the house alright but I haven't been out of it yet.
I play carefully with the kids. Give Ian his bottles. Play cards with Miles. Watch a lot of soccer. I had to explain the bite to Miles.
Doctors appointments and some trips out of the house later this week. I've had a friend or two over for short visits. Lots of flowers, food and kindnesses have arrived.
It's interesting. Despite all the well wishes, all the prayers, all the meals, all the offers to help, this is just a part I walk alone. I'm fine. I'm steady. I only mention it because I've gotten glimpses of other people's sorrow. Just a heads up that those calls won't be returned - no bandwidth for that, my friends.
Current goals: grow out cute pixie; feel well enough to start to exercise regularly; get two weeks out from surgery and all side effects (pills and drains); and have a little more fire in the belly for tussling with little boys. Miles is a little out of sorts with his Jammie-wearing, achey Mom. And he doesn't understand why LeBron doesn't play for Miami anymore:). Lots of important explaining to do.
For the first few days, I slept about fifteen minutes about every hour. The dreams were vivid and disjointed. Today, I slept nearly the whole day after throwing up for the first time since diagnosis. I think that was drugs without food. My appetite has been low and that slowed my pill intake.
I move about the house alright but I haven't been out of it yet.
I play carefully with the kids. Give Ian his bottles. Play cards with Miles. Watch a lot of soccer. I had to explain the bite to Miles.
Doctors appointments and some trips out of the house later this week. I've had a friend or two over for short visits. Lots of flowers, food and kindnesses have arrived.
It's interesting. Despite all the well wishes, all the prayers, all the meals, all the offers to help, this is just a part I walk alone. I'm fine. I'm steady. I only mention it because I've gotten glimpses of other people's sorrow. Just a heads up that those calls won't be returned - no bandwidth for that, my friends.
Current goals: grow out cute pixie; feel well enough to start to exercise regularly; get two weeks out from surgery and all side effects (pills and drains); and have a little more fire in the belly for tussling with little boys. Miles is a little out of sorts with his Jammie-wearing, achey Mom. And he doesn't understand why LeBron doesn't play for Miami anymore:). Lots of important explaining to do.
Friday, June 20, 2014
Home again, home again
A ginger jig.
Surgery is over. Some highs, some lows and some laughs.
Home resting now and no real complaints.
Surgery is over. Some highs, some lows and some laughs.
Home resting now and no real complaints.
Wednesday, June 18, 2014
Next up, radiation.
Time has slowed down. Tomorrow approaches but slowly. Not that I'm taking advantage of it and getting everything in order. Instead I'm just trying to spend time with Jim and the kids. Nothing special, but some quiet time for us.
I've talked to Miles a bit. Not too much. And I've confused him. I mentioned that I'd have a procedure like last time I was in the hospital with Ian. He started talking about me having a baby. So, I have a little more work to do on the communication front.
I've compartmentalized tomorrow. I'm not worrying about cancer. I'm worrying about not being able to pick up Ian for three weeks. And you know this (23 pound) baby likes to be carried. But that's been my approach with cancer. Focusing on the foreground. Trees not forest. Today not tomorrow.
I keep thinking how many times in life have I longed, really longed, for something - an exam, a stressful work situation, a conflict, a busy few days, business travel, chemo - to be over and then it is. So, that's sort of my attitude toward the next few days. Two to four weeks of recovery compared to five months of chemo. It'll be over and on to the next thing before I know it.
My anxiety about my echo was for naught. I got some words about my MRI and am electing to wait to hear them all because I'm not sure I understood the preview. And if I did, it wasn't fantastic.
Last World Cup, I watched every match. I was home on maternity leave with Miles and it was hot out. I snuggled with this babe, neglected to make friends with the other yoga moms and watched soccer. I'm having a bit of a repeat. I've watched most of the matches and I am reintroducing Miles to soccer. I was devastated when he complained during one game about not enough scoring. How at four is he already a typical American sports fan? What have I done wrong? Obviously I have no one to blame but myself, so I blame basketball.
We are hunkering down. It's mid-afternoon. Miles is napping in my bed. Ian is napping downstairs. Jim is working on the first floor. I've tried to put things in order at work and set it aside. We've declined a dozen generous offers of dinner and company over the last few days. We have accepted delivery of many many kindness. Notes of support and encouragement, flowers and gifts, offers of meals and extra hands to help us juggle a no-lift Mom with two littles. Don't tell Miles I called him that.
Some laundry, some packing, some playing. Dinner time, bedtime scramble and then a little kicking cancer out surgery. I'm up for it.
I've talked to Miles a bit. Not too much. And I've confused him. I mentioned that I'd have a procedure like last time I was in the hospital with Ian. He started talking about me having a baby. So, I have a little more work to do on the communication front.
I've compartmentalized tomorrow. I'm not worrying about cancer. I'm worrying about not being able to pick up Ian for three weeks. And you know this (23 pound) baby likes to be carried. But that's been my approach with cancer. Focusing on the foreground. Trees not forest. Today not tomorrow.
I keep thinking how many times in life have I longed, really longed, for something - an exam, a stressful work situation, a conflict, a busy few days, business travel, chemo - to be over and then it is. So, that's sort of my attitude toward the next few days. Two to four weeks of recovery compared to five months of chemo. It'll be over and on to the next thing before I know it.
My anxiety about my echo was for naught. I got some words about my MRI and am electing to wait to hear them all because I'm not sure I understood the preview. And if I did, it wasn't fantastic.
Last World Cup, I watched every match. I was home on maternity leave with Miles and it was hot out. I snuggled with this babe, neglected to make friends with the other yoga moms and watched soccer. I'm having a bit of a repeat. I've watched most of the matches and I am reintroducing Miles to soccer. I was devastated when he complained during one game about not enough scoring. How at four is he already a typical American sports fan? What have I done wrong? Obviously I have no one to blame but myself, so I blame basketball.
We are hunkering down. It's mid-afternoon. Miles is napping in my bed. Ian is napping downstairs. Jim is working on the first floor. I've tried to put things in order at work and set it aside. We've declined a dozen generous offers of dinner and company over the last few days. We have accepted delivery of many many kindness. Notes of support and encouragement, flowers and gifts, offers of meals and extra hands to help us juggle a no-lift Mom with two littles. Don't tell Miles I called him that.
Some laundry, some packing, some playing. Dinner time, bedtime scramble and then a little kicking cancer out surgery. I'm up for it.
Thursday, June 12, 2014
Another nice thing about cancer: perspective
First, I've spent the week at the hospital. Monday a two hour wait, literally to see the surgeon. Wednesday, my round of seconds. Second echocardiogram. Second MRI.
The echo started easy. On time, efficient, kind tech. But then we got too friendly. I made a joke about whether my heart was doing its job (obviously to unsophisticated me) and got all this hemming and hawing about results will be reported to the physician but I had a right to view them with my physician. Well I don't know about before but that jolted the blood pressure upward. Then I was reassured that she didn't want to get in the way of my surgery. So, I don't know what the report says, but what I heard was there is something wrong or different from last time we looked at your heart but it isn't so bad we have to cancel surgery. On that high note, I made my way to the MRI.
I swallowed a large dosage Ativan in the stairwell on the way to the next building. Although appropriate and recommended by all medical professional consulted, the stairwell made me feel sheepish. I was early for my appointment and waited for an hour and a half. Mid-wait, I remembered that MRIs weren't just awful because of the claustrophobia but the noise. I had forgotten about the sound. If I hadn't been Ativan addled, I'd have left. My fear and anxiety were pretty significant. Instead I read my book without processing. I watched the large Persian man next to me while he watched videos on his phone. After an hour together in the waiting room we were called back. Then we separately but simultaneously changed into gowns and took our places in the interior waiting room. Very awkward to make that transition from civilian attire to patient attire at the same time as someone else. It made me feel very frail and exposed. I try so hard to only be sick in diagnosis not appearance.
I was called first. I learned with more alarm that the MRI would last forty-five minutes, not twenty-five. Amen to Ativan. This radiation tech talked me through it and it was manageable. It ended on a funny note. My poor Persian fellow patient was still waiting when I got out and I got to witness his shock at seeing me post MRI ... Still gowned but now without a wig. I didn't care. At least my MRI was over.
Back again this morning for bloodwork. Nothing like three trips to the hospital in four days to bring sorrow to the forefront. Today's visit involved a fair amount of tearing up. For no particular reason aside from the obvious. I wrote Father's Day cards and cleaned out my purse while I waited.
But to the optimism. Today is a week since the first plumber arrived to snake out the clogged waste water line from our house to the DC sewer line. In the past week, we've had: two or three private plumbers; two DC WASA plumbers; one emergency dig out by DC WASA, including backhoes and dump trucks, very exciting for Miles; a sudden reversal of responsibility by DC WASA notwithstanding that they had already dug up my backyard and tore out my back steps; and now in a motion of pragmatism rather than defeat, multiple contractors consulted on the project. I hope for a possible resolution in the next few days. But cancer helps you not freak out about no real access to water in our home for a week now. With quick showers, judicious flushing, baths at neighbors and laundry at Mom's, we are managing. But this is the type of thing that would have driven me crazy a year ago. Now, it hardly registers. It is a problem that needs to be solved. Just one of many.
The echo started easy. On time, efficient, kind tech. But then we got too friendly. I made a joke about whether my heart was doing its job (obviously to unsophisticated me) and got all this hemming and hawing about results will be reported to the physician but I had a right to view them with my physician. Well I don't know about before but that jolted the blood pressure upward. Then I was reassured that she didn't want to get in the way of my surgery. So, I don't know what the report says, but what I heard was there is something wrong or different from last time we looked at your heart but it isn't so bad we have to cancel surgery. On that high note, I made my way to the MRI.
I swallowed a large dosage Ativan in the stairwell on the way to the next building. Although appropriate and recommended by all medical professional consulted, the stairwell made me feel sheepish. I was early for my appointment and waited for an hour and a half. Mid-wait, I remembered that MRIs weren't just awful because of the claustrophobia but the noise. I had forgotten about the sound. If I hadn't been Ativan addled, I'd have left. My fear and anxiety were pretty significant. Instead I read my book without processing. I watched the large Persian man next to me while he watched videos on his phone. After an hour together in the waiting room we were called back. Then we separately but simultaneously changed into gowns and took our places in the interior waiting room. Very awkward to make that transition from civilian attire to patient attire at the same time as someone else. It made me feel very frail and exposed. I try so hard to only be sick in diagnosis not appearance.
I was called first. I learned with more alarm that the MRI would last forty-five minutes, not twenty-five. Amen to Ativan. This radiation tech talked me through it and it was manageable. It ended on a funny note. My poor Persian fellow patient was still waiting when I got out and I got to witness his shock at seeing me post MRI ... Still gowned but now without a wig. I didn't care. At least my MRI was over.
Back again this morning for bloodwork. Nothing like three trips to the hospital in four days to bring sorrow to the forefront. Today's visit involved a fair amount of tearing up. For no particular reason aside from the obvious. I wrote Father's Day cards and cleaned out my purse while I waited.
But to the optimism. Today is a week since the first plumber arrived to snake out the clogged waste water line from our house to the DC sewer line. In the past week, we've had: two or three private plumbers; two DC WASA plumbers; one emergency dig out by DC WASA, including backhoes and dump trucks, very exciting for Miles; a sudden reversal of responsibility by DC WASA notwithstanding that they had already dug up my backyard and tore out my back steps; and now in a motion of pragmatism rather than defeat, multiple contractors consulted on the project. I hope for a possible resolution in the next few days. But cancer helps you not freak out about no real access to water in our home for a week now. With quick showers, judicious flushing, baths at neighbors and laundry at Mom's, we are managing. But this is the type of thing that would have driven me crazy a year ago. Now, it hardly registers. It is a problem that needs to be solved. Just one of many.
Sunday, June 8, 2014
Summertime
The past few weeks have been oddly normal. Work, socializing, groceries, bedtime routines.
A girls weekend filled with laughter, ridiculousness and poking about. Memorial Day weekend with our sixth wedding anniversary, our former Au pair's wedding and a friend's 40th birthday. Brunches, wine-filled afternoons, trips to the pool. My Mom's 70th birthday dinner. More socializing than we have done in months.
I feel pretty good for a girl with cancer. If you didn't know, you wouldn't know.
I have enough energy to get through the day. My eyesight is coming back. I can see the clock (as well as any forty year old without glasses) in the morning. My wedding ring fits. My ability to focus is growing. I can think beyond just trying to get through the day and to the point when I get to lay down.
Chemo already seems so long ago. The Tuesday routine is purged. I don't have an "Oh, wait" moment on Tuesday mornings. This is the shock of my post chemo world. That I could slog, fight, crawl and scrape my way through a literally inconceivably difficult life event and not shudder every Tuesday morning for the rest of my life.
This is not to say everything is restored. I still have a tendency to retreat to the Jelly Lounge in the evenings after the kids' bedtimes. I still have a fair amount of angst about some silly things and some serious things.
And my anxiety grows. I mean at least with chemo the hair is a fairly easy thing to discuss with others. I'm a little less inclined to chat about how swell I'm feeling about surgery. I long for a little anonymity. An old fashioned trip out of the country only to return when everything had healed and resolved sounds like a dignified approach.
Instead, I'll slog through this week's small indignities before next week's larger indignity. Final pre-op appointments and testing. The fateful and dreaded MRI. A technician's post-MRI expressions to interpret. The various statistical implications. A full work week. Two kids. One husband. And me pretending to enjoy summer.
A girls weekend filled with laughter, ridiculousness and poking about. Memorial Day weekend with our sixth wedding anniversary, our former Au pair's wedding and a friend's 40th birthday. Brunches, wine-filled afternoons, trips to the pool. My Mom's 70th birthday dinner. More socializing than we have done in months.
I feel pretty good for a girl with cancer. If you didn't know, you wouldn't know.
I have enough energy to get through the day. My eyesight is coming back. I can see the clock (as well as any forty year old without glasses) in the morning. My wedding ring fits. My ability to focus is growing. I can think beyond just trying to get through the day and to the point when I get to lay down.
Chemo already seems so long ago. The Tuesday routine is purged. I don't have an "Oh, wait" moment on Tuesday mornings. This is the shock of my post chemo world. That I could slog, fight, crawl and scrape my way through a literally inconceivably difficult life event and not shudder every Tuesday morning for the rest of my life.
This is not to say everything is restored. I still have a tendency to retreat to the Jelly Lounge in the evenings after the kids' bedtimes. I still have a fair amount of angst about some silly things and some serious things.
And my anxiety grows. I mean at least with chemo the hair is a fairly easy thing to discuss with others. I'm a little less inclined to chat about how swell I'm feeling about surgery. I long for a little anonymity. An old fashioned trip out of the country only to return when everything had healed and resolved sounds like a dignified approach.
Instead, I'll slog through this week's small indignities before next week's larger indignity. Final pre-op appointments and testing. The fateful and dreaded MRI. A technician's post-MRI expressions to interpret. The various statistical implications. A full work week. Two kids. One husband. And me pretending to enjoy summer.
Monday, May 26, 2014
the thirteenth tuesday
For starters, the title of the post is all wrong. It really isn't about tomorrow even if it is really nice not to be going to chemo for the first time in thirteen Tuesdays.
What it is all about is Wednesday. The day eight without chemo. I don't know (because I still can't bring myself to read any guide to cancer) what's in store, but it seems like Wednesday is the beginning of the end of the chemo side effects.
One of the fellows referred to me as a low side effect kindof girl. I liked the observation and she is right. I really haven't had it so bad. But it still hasn't been pretty.
From the chemo drugs: the low blood count. Which wouldn't mean much to me but for the fact that the fatigue it creates is like nothing I've ever experienced before.
From the blood count drugs: the back pain has continued. Two or three days a week I have deep, sometimes naroctic-requiring, lower back pain. Again, think back labor.
From the taxol: my nails, which held up for so long, ache and throb. A few of them look like they are going to go.
From the taxol: the hand and foot tingling. I've only really had it in my feet but it has grown progressively worse. For the past month or so, my feet have felt like they are falling asleep. But always. As in all the time. It is maddening. I'm constantly stretching them trying to wake them up. Apparently, this isn't always a permanent thing.
From all the chemo drgus: the hair loss. Its actually already started growing back. I've noticed a few eye lashes the other day. I've got wispy blonde hair coming back in. Not exactly ready for prime time but enough to give you some hope. And I promised Miles my hair would start growing back this summer. I wouldn't mind delivering on that promise early.
From the steriods: the swelling. I'm sure its a falsehood, but I've been happily assuming that my extra fifteen pounds is all due to the steriods (not the laziness or less than careful consumption). Even if that doesn't pan out, the puffy hands, feet and face are surely related to the steriods.
So, tomorrow is the first Tuesday since March without chemo. Wednesday is the beginning of the symptom fade.
What it is all about is Wednesday. The day eight without chemo. I don't know (because I still can't bring myself to read any guide to cancer) what's in store, but it seems like Wednesday is the beginning of the end of the chemo side effects.
One of the fellows referred to me as a low side effect kindof girl. I liked the observation and she is right. I really haven't had it so bad. But it still hasn't been pretty.
From the chemo drugs: the low blood count. Which wouldn't mean much to me but for the fact that the fatigue it creates is like nothing I've ever experienced before.
From the blood count drugs: the back pain has continued. Two or three days a week I have deep, sometimes naroctic-requiring, lower back pain. Again, think back labor.
From the taxol: my nails, which held up for so long, ache and throb. A few of them look like they are going to go.
From the taxol: the hand and foot tingling. I've only really had it in my feet but it has grown progressively worse. For the past month or so, my feet have felt like they are falling asleep. But always. As in all the time. It is maddening. I'm constantly stretching them trying to wake them up. Apparently, this isn't always a permanent thing.
From all the chemo drgus: the hair loss. Its actually already started growing back. I've noticed a few eye lashes the other day. I've got wispy blonde hair coming back in. Not exactly ready for prime time but enough to give you some hope. And I promised Miles my hair would start growing back this summer. I wouldn't mind delivering on that promise early.
From the steriods: the swelling. I'm sure its a falsehood, but I've been happily assuming that my extra fifteen pounds is all due to the steriods (not the laziness or less than careful consumption). Even if that doesn't pan out, the puffy hands, feet and face are surely related to the steriods.
So, tomorrow is the first Tuesday since March without chemo. Wednesday is the beginning of the symptom fade.
Tuesday, May 20, 2014
Woot Woot
I'm done. D.O.N.E. Done.
It's funny. I don't feel particularly anything about it. I feel calm. Quiet. Reflective. Proud. Cautiously optimistic.
Ready to have the chemo out of my system. My blood counts were low again. Even with the shots I'm administering, my energy is really low. I slept the afternoon away to try and recover from treatment. Once again, I am supposed to avoid any activities or people who could expose me to anything.
I am not ready to turn to what comes next. I'm ready for a little cancer-cation.
It's funny. I don't feel particularly anything about it. I feel calm. Quiet. Reflective. Proud. Cautiously optimistic.
Ready to have the chemo out of my system. My blood counts were low again. Even with the shots I'm administering, my energy is really low. I slept the afternoon away to try and recover from treatment. Once again, I am supposed to avoid any activities or people who could expose me to anything.
I am not ready to turn to what comes next. I'm ready for a little cancer-cation.
Tuesday, May 13, 2014
And then there was one
I joked with one of the chemo nurses today that I'd put in my own IV. Doesn't that just tell you something about my life. IV jokes.
The long and short of the joke was after several nurse-led tutorials, I'm an old pro at my white blood cell booster injections. I would note that the first shot required a glass of wine to steel my nerves, which was quite helpful but not technically part of their training program.
December 10, 2013 to May 13, 2014. It really isn't a long time. But the pacing has varied. The first eight weeks of the AC treatment went quickly. Treatment and chemo eclipse one week. Feeling good the next. The twelve weeks of T plus C. Like watching the clock on Christmas morning. It just wouldn't move.
We accomplished a lot in five months. We also forfeited a lot. I'd say - and Jim is sleeping so I can't confirm with him- that it was also five months of intense learning. About our families - who have been incredible and unwavering in their support, love and commitment to our return to health. About our friends - who've propped us up, distracted us and cared for us. About ourselves - who we are as people, as a couple, what we want our family to be. What we will teach our children about what matters in life. I have learned a lot about myself and I made some personal adjustments too. For example, I have learned to be more open. And I am more certain of myself and of the identity I want our family and our children to have. We will not just be takers. I do not know how yet, but it is important to me that we become a family that is more giving of its time and good fortune. I have benefitted from what others have gone out of their way to do for me and I want us to know the answer to what are we doing for others.
Today at infusion, the nurses had a party for a volunteer who put in 2000 hours in the past year. That is the equivalent of a full time job. She brings warm blankets, she talks to all the patients, she brings lunch, she finds whatever you need. She has been there every treatment session I had. She knows me now. Tells me about her home, her plans, her Mother's Day. Knows I'm the only one who eats the peanut butter and jelly sandwiches for lunch. Doing for others. Making a difference.
Eleven done. One to go. Even during treatment today when I was addled with the jumbo Benadryl dose, I was giddy. So close. So close. So close.
I'm sure surgery will be difficult but I don't care. Two weeks of physical discomfort? Sounds better than sixteen weeks of a deteriorating chemo mind game.
What else?
Miles misses Dani. Zaira seems great. Ian wants to walk. He appears to have a few words. Up. All done. Dada. Traitor.
Unexpected given that I'm still getting taxol, but my hair is starting to grow back. Peach fuzz, but still. Miles asked me why I had a boys hair cut. On a similar gender-focused note, we solved the "why miles won't eat grilled cheese" mystery. "It's not for boys" he told me one day. Ah, the importance of enunciation. One not girls, GRilled cheese later, he loves them.
Huge game for the Wizards tonight.
The long and short of the joke was after several nurse-led tutorials, I'm an old pro at my white blood cell booster injections. I would note that the first shot required a glass of wine to steel my nerves, which was quite helpful but not technically part of their training program.
December 10, 2013 to May 13, 2014. It really isn't a long time. But the pacing has varied. The first eight weeks of the AC treatment went quickly. Treatment and chemo eclipse one week. Feeling good the next. The twelve weeks of T plus C. Like watching the clock on Christmas morning. It just wouldn't move.
We accomplished a lot in five months. We also forfeited a lot. I'd say - and Jim is sleeping so I can't confirm with him- that it was also five months of intense learning. About our families - who have been incredible and unwavering in their support, love and commitment to our return to health. About our friends - who've propped us up, distracted us and cared for us. About ourselves - who we are as people, as a couple, what we want our family to be. What we will teach our children about what matters in life. I have learned a lot about myself and I made some personal adjustments too. For example, I have learned to be more open. And I am more certain of myself and of the identity I want our family and our children to have. We will not just be takers. I do not know how yet, but it is important to me that we become a family that is more giving of its time and good fortune. I have benefitted from what others have gone out of their way to do for me and I want us to know the answer to what are we doing for others.
Today at infusion, the nurses had a party for a volunteer who put in 2000 hours in the past year. That is the equivalent of a full time job. She brings warm blankets, she talks to all the patients, she brings lunch, she finds whatever you need. She has been there every treatment session I had. She knows me now. Tells me about her home, her plans, her Mother's Day. Knows I'm the only one who eats the peanut butter and jelly sandwiches for lunch. Doing for others. Making a difference.
Eleven done. One to go. Even during treatment today when I was addled with the jumbo Benadryl dose, I was giddy. So close. So close. So close.
I'm sure surgery will be difficult but I don't care. Two weeks of physical discomfort? Sounds better than sixteen weeks of a deteriorating chemo mind game.
What else?
Miles misses Dani. Zaira seems great. Ian wants to walk. He appears to have a few words. Up. All done. Dada. Traitor.
Unexpected given that I'm still getting taxol, but my hair is starting to grow back. Peach fuzz, but still. Miles asked me why I had a boys hair cut. On a similar gender-focused note, we solved the "why miles won't eat grilled cheese" mystery. "It's not for boys" he told me one day. Ah, the importance of enunciation. One not girls, GRilled cheese later, he loves them.
Huge game for the Wizards tonight.
Sunday, May 4, 2014
Getaway but not from it all
I remember the first time I went out without Miles. I was a plump postpartum mess. Sweaty with nerves and fears of all the things that could go wrong. No matter that I was leaving him with Jim and just going to a movie with some girlfriends. On the way to the movie, an intuitive friend realized this was first time I'd left Miles, and clucked over me and how brave I was and how fine he'd be. She was right, of course. But this pattern repeated itself the first time I left him overnight for a girls' weekend getaway.
This weekend, I started from a better spot. A little bit wiser and a more seasoned mother of two. On Saturday morning, I kissed Miles and Ian and was waiting by the door for Jim. I hustled him to the car and on our way.
Blue skies. Perfect temperature. Lattes and open road. But if you are reading this and you have cancer and you are heading out for your first trip away with your spouse, let me tell you, it won't be the trip you thought it would be. At least mine wasn't.
I'm not sure exactly why. Maybe it is because you forget, or I did, that these little junkets are how the whole thing starts. Two people who have interests, chemisty and curiosity in common. Getting to know each other. Taking little trips (in our case, to New York City after we'd known each other for about eight minutes). Talking, talking, talking. Figuring out that together the possibilities are limitless. And thats how, a few years later, life finds you married, happy, busy with jobs, mortgages, nanny-shares and sweet little bunnies who wipe their runny noses on you and you don't mind.
And then you are back in the car again. Road trip. Talking, talking, talking. But instead of which foreign city would you want to live it, it was all of the potential limited possibilities. What would Jim do: about school for the boys? about the house? about childcare? What would I do: to maximize the time? to make sure the boys knew me or had something of me? Just hashing and crying through the life without wife logistics.
Jim thinks, and he is usually right about these things, that it is the mental angst of December creeping back in again. We understand this phase of the process (chemo, surgery, radiation) but now we look ahead to the awful unknowing. Is it gone? Is it back? Did we beat it? Do we repeat it? Grief anew.
On the whole, the weekend was lovely. It is just that some aspects of our lives are a little too sad to consider and without the hectic mess of our lives, without the demands of the kids and jobs, with the time to talk and think and be together, it can be a bit overwhelming.
An example. Massages Sunday morning. Sounds lovely but after the massage, Jim complained that it was too long. Too much quiet time to think. I managed to distract myself, though I cried through a bit of mine, too.
Two funny moments from the weekend. Well, first, it really was lovely. It was a very pretty setting and a nice hotel. I am so grateful to have had the time to get away together and we did have a really nice time. We talked about other trips we had taken and reminded each other of favorite meals, hotels, rooms and funny moments along the way. The size and spector of Istanbul. The hang-gliding. The soda on the mountainside with bougenvilla. The restaruant and pool in Daliyan. The rooftop in Marrakesh. See, despite our grief, we still know how to have a good time. We lazed and read at the pool. We had cocktails and a cheese plate by the Miles' river. We had a bubble bath. We biked to dinner. We tucked into a spot for dessert. We puttered around and explored town. We got massages. We had breakfast in the sun by the water. We read the Sunday paper.
To the funny moments. First, Jim capped off our big weekend out of town with a big Saturday night watching Cspan. For real. I went to bed and he stay up watching the last few minutes of the White House Correspondents' Dinner and then spent another chunk of time watching the guests file out of the Washington Hilton like it was red carpet oscar action. Isn't that Madeleine Albright? Did you see Sofia Verga? Who is with Barbara Walters. Big night without the kids:)
Second, a different kind of funny. On the spa services form, it wanted to know all sorts of stuff that apparently would help them deliver exceptional treatments. I was debating whether I needed to or should disclose that I had cancer (which would I'm sure have lead to an uncomfortable and irrelevant conversation with a complete stranger) when I noticed that two boxes down on the form was nail fungus. I mean, seriously, are these conditions comparable in anyone's world? I laughed, ignored it all and just signed the form. The bald head and the skin might have suggested that I wasn't totally forthcoming but no one bothered to mention it.
This weekend, I started from a better spot. A little bit wiser and a more seasoned mother of two. On Saturday morning, I kissed Miles and Ian and was waiting by the door for Jim. I hustled him to the car and on our way.
Blue skies. Perfect temperature. Lattes and open road. But if you are reading this and you have cancer and you are heading out for your first trip away with your spouse, let me tell you, it won't be the trip you thought it would be. At least mine wasn't.
I'm not sure exactly why. Maybe it is because you forget, or I did, that these little junkets are how the whole thing starts. Two people who have interests, chemisty and curiosity in common. Getting to know each other. Taking little trips (in our case, to New York City after we'd known each other for about eight minutes). Talking, talking, talking. Figuring out that together the possibilities are limitless. And thats how, a few years later, life finds you married, happy, busy with jobs, mortgages, nanny-shares and sweet little bunnies who wipe their runny noses on you and you don't mind.
And then you are back in the car again. Road trip. Talking, talking, talking. But instead of which foreign city would you want to live it, it was all of the potential limited possibilities. What would Jim do: about school for the boys? about the house? about childcare? What would I do: to maximize the time? to make sure the boys knew me or had something of me? Just hashing and crying through the life without wife logistics.
Jim thinks, and he is usually right about these things, that it is the mental angst of December creeping back in again. We understand this phase of the process (chemo, surgery, radiation) but now we look ahead to the awful unknowing. Is it gone? Is it back? Did we beat it? Do we repeat it? Grief anew.
On the whole, the weekend was lovely. It is just that some aspects of our lives are a little too sad to consider and without the hectic mess of our lives, without the demands of the kids and jobs, with the time to talk and think and be together, it can be a bit overwhelming.
An example. Massages Sunday morning. Sounds lovely but after the massage, Jim complained that it was too long. Too much quiet time to think. I managed to distract myself, though I cried through a bit of mine, too.
Two funny moments from the weekend. Well, first, it really was lovely. It was a very pretty setting and a nice hotel. I am so grateful to have had the time to get away together and we did have a really nice time. We talked about other trips we had taken and reminded each other of favorite meals, hotels, rooms and funny moments along the way. The size and spector of Istanbul. The hang-gliding. The soda on the mountainside with bougenvilla. The restaruant and pool in Daliyan. The rooftop in Marrakesh. See, despite our grief, we still know how to have a good time. We lazed and read at the pool. We had cocktails and a cheese plate by the Miles' river. We had a bubble bath. We biked to dinner. We tucked into a spot for dessert. We puttered around and explored town. We got massages. We had breakfast in the sun by the water. We read the Sunday paper.
To the funny moments. First, Jim capped off our big weekend out of town with a big Saturday night watching Cspan. For real. I went to bed and he stay up watching the last few minutes of the White House Correspondents' Dinner and then spent another chunk of time watching the guests file out of the Washington Hilton like it was red carpet oscar action. Isn't that Madeleine Albright? Did you see Sofia Verga? Who is with Barbara Walters. Big night without the kids:)
Second, a different kind of funny. On the spa services form, it wanted to know all sorts of stuff that apparently would help them deliver exceptional treatments. I was debating whether I needed to or should disclose that I had cancer (which would I'm sure have lead to an uncomfortable and irrelevant conversation with a complete stranger) when I noticed that two boxes down on the form was nail fungus. I mean, seriously, are these conditions comparable in anyone's world? I laughed, ignored it all and just signed the form. The bald head and the skin might have suggested that I wasn't totally forthcoming but no one bothered to mention it.
Tuesday, April 29, 2014
Old girl and her twisted friend
I am forty. Obviously, I was not looking forward to it but I was not afraid of it either. Mostly, I just wanted to be able to celebrate it the way I planned. My life nicely humming along the trajectory I mentally plotted. So there was some disappointment to work through in advance.
It turned out to be a beautiful day. Jim can throw a party. Perfect weather, great food, beautiful setting, music, friends, family, bubbly, beers. Kids tumbling about in the alley; parents relaxing in the back yard. A lazy, luxurious day. And I was spoiled by your time, gifts and kindnesses. I love it, thank you.
Because cancer and a big birthday aren't enough excitement, we welcomed our new Au pair, Zaira, on Saturday. She is getting situated and acquainted with our family. Our house feels a bit like a boarding house. Dani is sleeping on the sofa. Zaira is in her room. Mom stayed last night on another sofa. Plus the basement tenants. Busy house.
The kitchen at mealtimes is a hot mess. This morning Jim retreated observing there were too many women in the kitchen. Then we blew a fuse. And we had to get into the basement apartment to access the fuse box. All while we were doing the breakfast, pack lunch, get out the door dance with two parents, two kids, two Au pairs and one mother (in-law) in our galley kitchen. Welcome to our crazy family, oh by the way, my hair style is totally different today because I wear a wig, have a good day, Zaira!
Today was almost a no treatment day. We got there early. Bloodwork done easily. First patient at the infusion center. After several others went back before me, I learned my blood counts were too low. The good doctor ordered a manual count to see if I could proceed. A ninety minute wait that we filled running errands.
We got the go ahead. The caveat is the need for three shots for the three days following treatment for these last four cycles (three to go). This is when everything I'm juggling seems like a bit too much.
The news about the blood count was really tough news. I want to work the plan. I want to worry about wrinkles and over the hill jokes. I want to coast through the rest of the chemo and into the break before surgery.
Last week we canceled our summer vacation for radiation. Today we canceled the first night of our two night get away this weekend for the shot appointment.
I wish I could articulate how I feel. I guess disappointed. Come on old girl. Keep up. I just want to crisply accomplish the steps that maximize my odds for cure. In an attempt to have some mind control over the randomness of this disease and diagnosis I'd like to march along, check the boxes, accomplish the milestones. But this disease and the chemo treatment are big, clumsy oafs. The precision waits for the surgery and in the meantime we duke it out. Chemo, my twisted friend, my arbitrary but strongest ally. Killing the cancer cells and diminishing my ability to fight cancer. She is hard to love, that one.
I'm reading The Goldfinch which is based on the changed life trajectory of a young boy whose Mom died unexpectedly when he was 13. It is excellent but it is a haunting read for me these days.
Birthday week. Ninth treatment week. Wizards playoffs. New Au pair. Almost May. Almost summer. Almost there.
It turned out to be a beautiful day. Jim can throw a party. Perfect weather, great food, beautiful setting, music, friends, family, bubbly, beers. Kids tumbling about in the alley; parents relaxing in the back yard. A lazy, luxurious day. And I was spoiled by your time, gifts and kindnesses. I love it, thank you.
Because cancer and a big birthday aren't enough excitement, we welcomed our new Au pair, Zaira, on Saturday. She is getting situated and acquainted with our family. Our house feels a bit like a boarding house. Dani is sleeping on the sofa. Zaira is in her room. Mom stayed last night on another sofa. Plus the basement tenants. Busy house.
The kitchen at mealtimes is a hot mess. This morning Jim retreated observing there were too many women in the kitchen. Then we blew a fuse. And we had to get into the basement apartment to access the fuse box. All while we were doing the breakfast, pack lunch, get out the door dance with two parents, two kids, two Au pairs and one mother (in-law) in our galley kitchen. Welcome to our crazy family, oh by the way, my hair style is totally different today because I wear a wig, have a good day, Zaira!
Today was almost a no treatment day. We got there early. Bloodwork done easily. First patient at the infusion center. After several others went back before me, I learned my blood counts were too low. The good doctor ordered a manual count to see if I could proceed. A ninety minute wait that we filled running errands.
We got the go ahead. The caveat is the need for three shots for the three days following treatment for these last four cycles (three to go). This is when everything I'm juggling seems like a bit too much.
The news about the blood count was really tough news. I want to work the plan. I want to worry about wrinkles and over the hill jokes. I want to coast through the rest of the chemo and into the break before surgery.
Last week we canceled our summer vacation for radiation. Today we canceled the first night of our two night get away this weekend for the shot appointment.
I wish I could articulate how I feel. I guess disappointed. Come on old girl. Keep up. I just want to crisply accomplish the steps that maximize my odds for cure. In an attempt to have some mind control over the randomness of this disease and diagnosis I'd like to march along, check the boxes, accomplish the milestones. But this disease and the chemo treatment are big, clumsy oafs. The precision waits for the surgery and in the meantime we duke it out. Chemo, my twisted friend, my arbitrary but strongest ally. Killing the cancer cells and diminishing my ability to fight cancer. She is hard to love, that one.
I'm reading The Goldfinch which is based on the changed life trajectory of a young boy whose Mom died unexpectedly when he was 13. It is excellent but it is a haunting read for me these days.
Birthday week. Ninth treatment week. Wizards playoffs. New Au pair. Almost May. Almost summer. Almost there.
Tuesday, April 22, 2014
Working 9 to 5
Ohh. It was a long one. Technology improvements, implementation issues. Just like a day on the job. I could consult for them. Today was the first day with new IV pumps. Nurses were well trained and ready. The pharmacy, not so much. Patients were waiting up to three hours for the chemo drugs from the pharmacy because the new pumps required new tubing and for whatever reason that increased the wait time to interminable.
We arrived at Georgetown for a radiation consult at 9. It was a good appointment. An odd observation. The waiting room was full of wildlife photographs. I thought the first one I saw was nice - a distraction. Then I realized there were tight groupings of four - four lions, four elephants, four polar bears everywhere. It was glamour shots for lions and tigers. Odd.
Downstairs by 10:30. Worked my infusion "shift" until 5. Long day. On the way home, Jim asked if I wanted to stop at the grocery store with him. That's funny.
What else? The chemo nurse who was diagnosed with and treated for breast cancer last year was my nurse today. I've had her a few times. Some times she doesn't want to talk to me (patients) about it. Sometimes she does. Today, we talked surgery, reconstruction and tattoos. A really nice voice to have in the mix for me.
I've never had the urge to run my hands through another person's hair before but today I was mesmerized by her hair. She completed chemo last fall. It is full, lush and pretty. The white is gone. The curl has started to straighten out. It's about 3 inches. Six months. I admit I was hoping I'd have hair two days after chemo but it was validating to see a six month post chemo sneak peak. I didn't cross the line with my nurse, but I did tell her it looked great.
Healing help arrived today: chocolates and crystals. Love it.
Eight treatments down. Four to go. I can see the finish line.
We arrived at Georgetown for a radiation consult at 9. It was a good appointment. An odd observation. The waiting room was full of wildlife photographs. I thought the first one I saw was nice - a distraction. Then I realized there were tight groupings of four - four lions, four elephants, four polar bears everywhere. It was glamour shots for lions and tigers. Odd.
Downstairs by 10:30. Worked my infusion "shift" until 5. Long day. On the way home, Jim asked if I wanted to stop at the grocery store with him. That's funny.
What else? The chemo nurse who was diagnosed with and treated for breast cancer last year was my nurse today. I've had her a few times. Some times she doesn't want to talk to me (patients) about it. Sometimes she does. Today, we talked surgery, reconstruction and tattoos. A really nice voice to have in the mix for me.
I've never had the urge to run my hands through another person's hair before but today I was mesmerized by her hair. She completed chemo last fall. It is full, lush and pretty. The white is gone. The curl has started to straighten out. It's about 3 inches. Six months. I admit I was hoping I'd have hair two days after chemo but it was validating to see a six month post chemo sneak peak. I didn't cross the line with my nurse, but I did tell her it looked great.
Healing help arrived today: chocolates and crystals. Love it.
Eight treatments down. Four to go. I can see the finish line.
Monday, April 21, 2014
The old me
Easter was sunny and slow. Coffees, egg hunts, Easter baskets (yes, with candy) and brunch with the Kowats. Miles is a magical, wondering, wide-eyed age. Where does the Easter bunny live the rest of the time? Can the Easter bunny come again tonight? ... He also had the good fortune of going to the White House Easter Egg Roll today and threw his egg rather than rolling it. At a person. Ah, four year olds.
Easter was lost on Ian. Except for the meals, which he enjoyed with his usual enthusiasm. He is nine months. His dinner tonight was ham, cooked carrots, macaroni and cheese with strawberries for dessert. Talk about zeal.
Two things to note on the cancer front. First, I've noticed a slight shift in my thinking. My fear of death and sense that I have to confront and prepare for it has been replaced with a working assumption that I will live. This is not a big statement. It is not defiant; it is not triumphant. Just a quiet shift back to a former default. I wish I could claim a mental victory. But truthfully, I think it is as much mental fatigue. Or laziness. Or I am just forgetting that I should worry about everything. Regardless, my private burden I carry since diagnosis, my heartbreak for my three boys, has lifted. Some days it's not even there.
Second, I've had another radical shift in my thinking. I asked Jim the other day if my bald head was cute enough to sport bare. From the drama and trauma of the hair loss to is it cute enough? That is some mental mileage. Jim's response was prudent. He reminded me that, while cute, it would be arresting for others and I would probably be uncomfortable with their response to me. He is right. But look at me. What is it? Ninety days to change my reflection from chemo to Kelly.
These shifts help. They stabilize me. They make me mentally and physically familiar to myself. I recognize the old me. Or just the me.
House of cards tonight. Treatment tomorrow.
Easter was lost on Ian. Except for the meals, which he enjoyed with his usual enthusiasm. He is nine months. His dinner tonight was ham, cooked carrots, macaroni and cheese with strawberries for dessert. Talk about zeal.
Two things to note on the cancer front. First, I've noticed a slight shift in my thinking. My fear of death and sense that I have to confront and prepare for it has been replaced with a working assumption that I will live. This is not a big statement. It is not defiant; it is not triumphant. Just a quiet shift back to a former default. I wish I could claim a mental victory. But truthfully, I think it is as much mental fatigue. Or laziness. Or I am just forgetting that I should worry about everything. Regardless, my private burden I carry since diagnosis, my heartbreak for my three boys, has lifted. Some days it's not even there.
Second, I've had another radical shift in my thinking. I asked Jim the other day if my bald head was cute enough to sport bare. From the drama and trauma of the hair loss to is it cute enough? That is some mental mileage. Jim's response was prudent. He reminded me that, while cute, it would be arresting for others and I would probably be uncomfortable with their response to me. He is right. But look at me. What is it? Ninety days to change my reflection from chemo to Kelly.
These shifts help. They stabilize me. They make me mentally and physically familiar to myself. I recognize the old me. Or just the me.
House of cards tonight. Treatment tomorrow.
Tuesday, April 15, 2014
Carry on, my friend
Today, gratitude. It is important for me to cultivate it - it helps me stave off any encroaching bitterness or anger. I forget it some days, but I am grateful for much. Selfishly, I am grateful to be making it through treatment without material complications. Not too sick, not too fatigued, not too many of the unpleasant side effects. And the list of unpleasant is long. Unfortunately, today we did have our first setback. My counts were low so my dose was lowered with the goal of protecting (not delaying) the final carbo session. The good doctor tried to reassure me it was fine. My original dose was quite robust and such. I don't know the medical side of it, but I was disappointed not to stick with the plan - particularly as I have a sense that the original plan was the one that maximized my odds. I am actually not sure the math works in that linear of a fashion, but it was my first bad news since I started chemo. Fucking cancer - such an attention junky. Back to the gratitude.
There is a quiet and beautiful thing I observe in the infusion center when we go for treatment. We often sit in the waiting room for a good bit of time. I watch people come in, sign in and sit quietly and wait patiently. For long amounts of time. Amounts of time that wouldn't really be tolerated other places. Eventually folks are called back. They stand, stretch, carry coolers and bags of reading material back into the small campsites for chemo. Rarely does someone come alone. I see friends and family, but mostly I see a whole lot of married couples. A whole lot of married couples doing the hard work of marriage.
They are mostly older couples who appear to have been married for decades. But there are a smattering of new couples like us. Others, who I expect, like us, shared vows earnestly, purposefully, and as knowingly as one could at the time. Others, like us, who probably imagined our commitment to look more like the 60, 70 and 80 year old duos battling cancer.
Regardless, here we sit and I see this beautiful sequence play out across the waiting room a dozen times, a dozen couples, every Tuesday. Jim, like the others, sits quietly and waits patiently. When I'm called, he stands, stretches, carries a cooler with snacks, and a backpack with diversions and fulfills a vow to love and cherish for better or for worse. A difficult thing done well. Thank you, Jimmy.
I am also grateful that we really have stabilized. Amazing what you can adjust to in life. I am less raw with grief. I have less to say (sorry - never much for words). Our pressing daily concerns are more trivial. Monday night date nights are only occasional. We are quietly heads down focused on the rest of chemo, then surgery, then radiation. I bet Miles doesn't even remember I'm sick. We usually have groceries, pay the bills on time and have time to exhale. I mean, we went dancing on Saturday night. Pretty good for a stage three cancer patient in the middle of chemo. Pat, pat. Of course, we were still home, exhausted and in bed by 10:30. Age or cancer? Let's pretend it was cancer.
Spring is still more difficult than we expected. We are stable, but not exactly cheery. And this time of year in Washington is all cheer. And roof deck dining. And spring break travel. And freshness. We are anything but fresh. But, the gratitude, Kelly...
I remain in your debt. I receive a package every treatment day from an Arlington girlfriend on temporary loan to Massachusetts. I get a joke every Tuesday for treatment from an AOL girlfriend on apparently permanent loan to San Francisco. Two other AOL girlfriends provided private yoga classes. Long-distance friends from Northwestern formed a supper club for us. Sounds like Jim will be wearing a tie to dinner. The list is long: spring pop of color flowers from a coworker; a necklace from Mom's neighbor; warm hats from Arlington, San Diego and Chicago, meals, meals, cards, notes, wellness texts. Thank you.
Today was the intense treatment. "Intense treatment, intense healing" says one wise one. And I close with another line that resonated from a recent card. I was instructed by a fellow survivor to "carry on, my friend." I liked it. It made the job ahead seem small. Manageable. Just carry on. Who can't do that? Thanks for reminding me I can, my friend.
There is a quiet and beautiful thing I observe in the infusion center when we go for treatment. We often sit in the waiting room for a good bit of time. I watch people come in, sign in and sit quietly and wait patiently. For long amounts of time. Amounts of time that wouldn't really be tolerated other places. Eventually folks are called back. They stand, stretch, carry coolers and bags of reading material back into the small campsites for chemo. Rarely does someone come alone. I see friends and family, but mostly I see a whole lot of married couples. A whole lot of married couples doing the hard work of marriage.
They are mostly older couples who appear to have been married for decades. But there are a smattering of new couples like us. Others, who I expect, like us, shared vows earnestly, purposefully, and as knowingly as one could at the time. Others, like us, who probably imagined our commitment to look more like the 60, 70 and 80 year old duos battling cancer.
Regardless, here we sit and I see this beautiful sequence play out across the waiting room a dozen times, a dozen couples, every Tuesday. Jim, like the others, sits quietly and waits patiently. When I'm called, he stands, stretches, carries a cooler with snacks, and a backpack with diversions and fulfills a vow to love and cherish for better or for worse. A difficult thing done well. Thank you, Jimmy.
I am also grateful that we really have stabilized. Amazing what you can adjust to in life. I am less raw with grief. I have less to say (sorry - never much for words). Our pressing daily concerns are more trivial. Monday night date nights are only occasional. We are quietly heads down focused on the rest of chemo, then surgery, then radiation. I bet Miles doesn't even remember I'm sick. We usually have groceries, pay the bills on time and have time to exhale. I mean, we went dancing on Saturday night. Pretty good for a stage three cancer patient in the middle of chemo. Pat, pat. Of course, we were still home, exhausted and in bed by 10:30. Age or cancer? Let's pretend it was cancer.
Spring is still more difficult than we expected. We are stable, but not exactly cheery. And this time of year in Washington is all cheer. And roof deck dining. And spring break travel. And freshness. We are anything but fresh. But, the gratitude, Kelly...
I remain in your debt. I receive a package every treatment day from an Arlington girlfriend on temporary loan to Massachusetts. I get a joke every Tuesday for treatment from an AOL girlfriend on apparently permanent loan to San Francisco. Two other AOL girlfriends provided private yoga classes. Long-distance friends from Northwestern formed a supper club for us. Sounds like Jim will be wearing a tie to dinner. The list is long: spring pop of color flowers from a coworker; a necklace from Mom's neighbor; warm hats from Arlington, San Diego and Chicago, meals, meals, cards, notes, wellness texts. Thank you.
Today was the intense treatment. "Intense treatment, intense healing" says one wise one. And I close with another line that resonated from a recent card. I was instructed by a fellow survivor to "carry on, my friend." I liked it. It made the job ahead seem small. Manageable. Just carry on. Who can't do that? Thanks for reminding me I can, my friend.
Tuesday, April 1, 2014
French fries and hot dogs
It's a grab bag today.
Treatment. Third round without a doctors appointment first. This continues to challenge the limits of my ability to tolerate administrative incompetence. Last time I didn't have enough bloodwork done. One hour delay, don't pass go. Today, I had the wrong bloodwork done. Arrived at 9:00. Left at 2:30. I'd like to update my DMV analogy to navigating a DMV and not speaking the language. You just cannot suss out the path out of the maze. Because there isn't one.
Great American Traditions. But first New York. I am reminded of a favorite correction a friend makes. A trip with family is a family trip not a vacation. New York was a family trip. Great moments, great memories. Not particularly relaxing. Obviously, no mother (in her right mind) would think a train idea with two kids to New York was an especially good idea. At one point Jim and I were traveling together both ways. The plans evolved and then I was solo parenting both ways. Plus the cumulative fatigue from the chemo. Plus the harder treatment last week.
A friend described the weekend as bat shit crazy. It was and it was also fun. And Miles loved it. The highlights for me include lots of walking through the city and Central Park, lattes and a stolen quiet hour with Jim while both boys slept in stroller and ergo, reading the NY Times at the pool while Jim and Miles swam and Ian slept, and Ian's first swim. Jim and I joked....too bad he doesn't like the water... Miles' highlights include the hotel room (he liked the telephone, the bed, and I swear this is a quote "where the bathroom was located"), a Central Park (purple) horse carriage ride and ice cream. I speculate but Ian's highlights include napping on mom in the ergo, swimming and all the meals. Jim, he is easy. He loves New York and loved showing it off to Miles.
So, a good, but you are crazy, gurl, weekend. We (Miles, Ian and I) train home in the rain on Saturday afternoon. I lug Miles in stroller, Ian in pack, and luggage off train, up to parking lot and load the car. It's rainy in Washington. Which just means that for some reason there is traffic and gridlock everywhere. After twenty minutes and little progress, I replan my route and told Miles we were getting French fries on the way home. Miles worried because his shoes were off. I proudly introduced him to two great American traditions. McDonalds and a drive thru. One little white paper bag of fries later ("they're so long, Mommy), he was very impressed with his Mom. I was impressed with how delicious and satisfying those fries were. At least I can say to Jim (who will, when he reads this blog and learns of this, be horrified) our children have never set foot in a McDonalds. All delicious indulgences in moderation and by my count a rainy Saturday afternoon trip through a McDonalds drive through falls into that category.
Big, hot breathed dogs. How to make this connection? By Sunday, I was losing my mind a bit after four days of juggling my kids (stay at homers - IMO working and juggling has got to be easier:)). Boozy brunch, play date, pedicure and another play date and dinner later, my balance was restored. These friends of ours are like man's best friend. They are strong, steady, loyal and loving. It's like when you are sitting on the sofa and you happen to glance down, your big hot breathed dog is already looking up and saying "Yes, let's." Mans best and breast friends - I mean, those are some compliments. All this is before I came home from treatment today to a spring garden delivered by the Mt P crew. Dogs, all of y'all.
Treatment. Third round without a doctors appointment first. This continues to challenge the limits of my ability to tolerate administrative incompetence. Last time I didn't have enough bloodwork done. One hour delay, don't pass go. Today, I had the wrong bloodwork done. Arrived at 9:00. Left at 2:30. I'd like to update my DMV analogy to navigating a DMV and not speaking the language. You just cannot suss out the path out of the maze. Because there isn't one.
Great American Traditions. But first New York. I am reminded of a favorite correction a friend makes. A trip with family is a family trip not a vacation. New York was a family trip. Great moments, great memories. Not particularly relaxing. Obviously, no mother (in her right mind) would think a train idea with two kids to New York was an especially good idea. At one point Jim and I were traveling together both ways. The plans evolved and then I was solo parenting both ways. Plus the cumulative fatigue from the chemo. Plus the harder treatment last week.
A friend described the weekend as bat shit crazy. It was and it was also fun. And Miles loved it. The highlights for me include lots of walking through the city and Central Park, lattes and a stolen quiet hour with Jim while both boys slept in stroller and ergo, reading the NY Times at the pool while Jim and Miles swam and Ian slept, and Ian's first swim. Jim and I joked....too bad he doesn't like the water... Miles' highlights include the hotel room (he liked the telephone, the bed, and I swear this is a quote "where the bathroom was located"), a Central Park (purple) horse carriage ride and ice cream. I speculate but Ian's highlights include napping on mom in the ergo, swimming and all the meals. Jim, he is easy. He loves New York and loved showing it off to Miles.
So, a good, but you are crazy, gurl, weekend. We (Miles, Ian and I) train home in the rain on Saturday afternoon. I lug Miles in stroller, Ian in pack, and luggage off train, up to parking lot and load the car. It's rainy in Washington. Which just means that for some reason there is traffic and gridlock everywhere. After twenty minutes and little progress, I replan my route and told Miles we were getting French fries on the way home. Miles worried because his shoes were off. I proudly introduced him to two great American traditions. McDonalds and a drive thru. One little white paper bag of fries later ("they're so long, Mommy), he was very impressed with his Mom. I was impressed with how delicious and satisfying those fries were. At least I can say to Jim (who will, when he reads this blog and learns of this, be horrified) our children have never set foot in a McDonalds. All delicious indulgences in moderation and by my count a rainy Saturday afternoon trip through a McDonalds drive through falls into that category.
Big, hot breathed dogs. How to make this connection? By Sunday, I was losing my mind a bit after four days of juggling my kids (stay at homers - IMO working and juggling has got to be easier:)). Boozy brunch, play date, pedicure and another play date and dinner later, my balance was restored. These friends of ours are like man's best friend. They are strong, steady, loyal and loving. It's like when you are sitting on the sofa and you happen to glance down, your big hot breathed dog is already looking up and saying "Yes, let's." Mans best and breast friends - I mean, those are some compliments. All this is before I came home from treatment today to a spring garden delivered by the Mt P crew. Dogs, all of y'all.
Tuesday, March 25, 2014
Tire Talk
Damn. I didn't realize the new normal - which wasn't exactly one you'd seek out- could slip off so easily.
What happened? We went to meet a surgeon Monday. It was like traveling back to December. All we talked about were uncertainties and unknowns. The surgeon was no nonsense. She made chemo sound fun. We were reminded of our potential future dance partners LLB - lung, liver and bone cancer. We talked single or bilateral. We talked about what to keep (none of the good stuff). What to part with (the good stuff) and what I'll get in exchange (hmm).
Now, I was trying to look on the bright side of this phase of my recovery. A good friend had described her breasts, after nursing two kids, as tube socks with a tennis ball at the end. At the very least, let's agree that they aren't what they were. I have been working to achieve equanimity with this transformation by envisioning an upgrade. Old tires for new tires so to speak. Imagine the performance enhancements, I was thinking. Imagine how lovely to have something new, I was thinking. It turns out, when you get to brass tacks, it's not an upgrade. It's more like old tires for spare tires.
The surgeon concerned with the important stuff, like pathology, deferred all the detailed tire talk to the plastic surgeon. The spare tire surprised me and Jim likes the current set. Jim and I drove home from the appointment in separate cars, crying, talking on the phone trying to figure out what threw us.
We both had sad days. We went out for a date night tea and fought over who knows what. Neither of us slept well but we did end up having one of those treasured, drowsy, middle of the night cry-cuddle-chats. Until Miles, who was sleeping quietly on the edge of the bed woke up and complained that he wanted to be in the cuddle. Outrageous but we acquiesced. Then we limped into Tuesday.
Here is the good news. First, the upside is going to the hospital isn't depressing when you already are. And today was good. We met with the oncology team. The good doctor is encouraged and encouraging. She clucks over and dismisses our attempt to talk about LLB. Too early she says. First chemo. Then surgery. Then we can talk.
Today was the tough stuff. Or to steal one of your lines, intense treatment, intense healing. Wocka, wocka, baby. This week's goal is to feel well enough to have a long weekend in NY. It would be our first time out of town since the news broke and feels overdue and deserved.
I've done eight of sixteen cycles of chemo. I'm halfway to hair, and halfway and more to better health.
As for the tires, they've done plenty of work. They've turned heads. They've filled out dresses and lovely little things. They've ensnared a good man and they've nursed my boys. The latter being one of the most tender, beautiful, cherished accomplishments in my life. They've served me well, but you can take them. At this point, they are just tires. Spares will do fine.
What happened? We went to meet a surgeon Monday. It was like traveling back to December. All we talked about were uncertainties and unknowns. The surgeon was no nonsense. She made chemo sound fun. We were reminded of our potential future dance partners LLB - lung, liver and bone cancer. We talked single or bilateral. We talked about what to keep (none of the good stuff). What to part with (the good stuff) and what I'll get in exchange (hmm).
Now, I was trying to look on the bright side of this phase of my recovery. A good friend had described her breasts, after nursing two kids, as tube socks with a tennis ball at the end. At the very least, let's agree that they aren't what they were. I have been working to achieve equanimity with this transformation by envisioning an upgrade. Old tires for new tires so to speak. Imagine the performance enhancements, I was thinking. Imagine how lovely to have something new, I was thinking. It turns out, when you get to brass tacks, it's not an upgrade. It's more like old tires for spare tires.
The surgeon concerned with the important stuff, like pathology, deferred all the detailed tire talk to the plastic surgeon. The spare tire surprised me and Jim likes the current set. Jim and I drove home from the appointment in separate cars, crying, talking on the phone trying to figure out what threw us.
We both had sad days. We went out for a date night tea and fought over who knows what. Neither of us slept well but we did end up having one of those treasured, drowsy, middle of the night cry-cuddle-chats. Until Miles, who was sleeping quietly on the edge of the bed woke up and complained that he wanted to be in the cuddle. Outrageous but we acquiesced. Then we limped into Tuesday.
Here is the good news. First, the upside is going to the hospital isn't depressing when you already are. And today was good. We met with the oncology team. The good doctor is encouraged and encouraging. She clucks over and dismisses our attempt to talk about LLB. Too early she says. First chemo. Then surgery. Then we can talk.
Today was the tough stuff. Or to steal one of your lines, intense treatment, intense healing. Wocka, wocka, baby. This week's goal is to feel well enough to have a long weekend in NY. It would be our first time out of town since the news broke and feels overdue and deserved.
I've done eight of sixteen cycles of chemo. I'm halfway to hair, and halfway and more to better health.
As for the tires, they've done plenty of work. They've turned heads. They've filled out dresses and lovely little things. They've ensnared a good man and they've nursed my boys. The latter being one of the most tender, beautiful, cherished accomplishments in my life. They've served me well, but you can take them. At this point, they are just tires. Spares will do fine.
Thursday, March 20, 2014
Moon Face
I'm in a funny place.
We have moved into our new reality with conviction. It's like it's our lives' we are living.
The new chemo is a breeze compared to the last. Three down, nine to go. Next up, and every third, is slightly more rigorous. I have the medication regimen down to manage it.
But going to the hospital for these appointments is much harder. I cry at every session whereas before I gritted my teeth through them.
I think the challenge is that I can taste my life and I want it. So I busy myself with all of my familiar routines and rhythms until treatment days come. Treatment is like the grim reaper of the tedious luxurious daily routines.
I sit down for bloodwork and wonder will I make it to Miles' fifth birthday? I wait for results and wonder how will these boys know me if I am not here to raise them? By the time I'm ready for treatment, I'm a mess. Will Jim know what is important to tell them about me? Will he be able to love them, cuddle them, wrestle them, dote on them enough for both of us? Who will they go to for quietness, comfort and truth?
So I'm in a funny place because I feel good, life is familiar except for wigs and Tuesdays.
Speaking of, last Tuesday, I asked my chemo nurse about some of the steroid symptoms. The nurse referred to one of the symptoms as "moon face." Sadly, it is just like it sounds. Flat, round, swollen face. Check, check, check. I feel my decision not to be an informed chemo patient served me well. No good would have come of knowing I'd have a moon face in advance.
The consults start next week. Appointments with surgeons and radiologists. Preparing for the next phases of my twelve months of transformation.
We have moved into our new reality with conviction. It's like it's our lives' we are living.
The new chemo is a breeze compared to the last. Three down, nine to go. Next up, and every third, is slightly more rigorous. I have the medication regimen down to manage it.
But going to the hospital for these appointments is much harder. I cry at every session whereas before I gritted my teeth through them.
I think the challenge is that I can taste my life and I want it. So I busy myself with all of my familiar routines and rhythms until treatment days come. Treatment is like the grim reaper of the tedious luxurious daily routines.
I sit down for bloodwork and wonder will I make it to Miles' fifth birthday? I wait for results and wonder how will these boys know me if I am not here to raise them? By the time I'm ready for treatment, I'm a mess. Will Jim know what is important to tell them about me? Will he be able to love them, cuddle them, wrestle them, dote on them enough for both of us? Who will they go to for quietness, comfort and truth?
So I'm in a funny place because I feel good, life is familiar except for wigs and Tuesdays.
Speaking of, last Tuesday, I asked my chemo nurse about some of the steroid symptoms. The nurse referred to one of the symptoms as "moon face." Sadly, it is just like it sounds. Flat, round, swollen face. Check, check, check. I feel my decision not to be an informed chemo patient served me well. No good would have come of knowing I'd have a moon face in advance.
The consults start next week. Appointments with surgeons and radiologists. Preparing for the next phases of my twelve months of transformation.
Saturday, March 15, 2014
The problem with cancer
See. My sense of humor is returning. As if cancer brought anything but problems.
The problem with a slightly less rigorous round of treatment is that your appetite for life returns. In being less miserable, less stretched in all ways, you remember what you were doing, what you had planned, your ambitions before the news broke over you.
For example, this year, I turn forty. The plan was to have my precious, healthy baby and then get fit and fabulous for forty. Birthday to be marked by kid-free international travel and perhaps nice dinners with friends or family.
Ian is precious and healthy. The rest of the plan slipped through my fingers. But I feel just well enough to have a sense of something that is a cross between remorse and guilt at all that I'm not doing.
It is the same at home. We completed the renovation and moved up from our basement apartment July 14. Ian was born July 15. The boxes are unpacked - mostly thanks to family - but the walls, the windows, the furnishings, the garden, all neglected. Spring comes and we still have fall leaves to rake.
I think Jim has already reconciled this aspect of our lives. He has resolved to ignore all the messes and incomplete projects. I'm just starting to notice them. New house, new baby, return to work, diagnosis, begin treatment, shift to "easy" chemo - I'm looking up and around seriously for the first time in a long time and it is frustrating.
I'm trying to will my way back into it. It isn't working but I'm trying.
Actually, the most important part of all of this, is that I am starting to regain the sense of a future. I mean my having one.
What else? Miles turns four in a week or so. Curious, strong-willed and generous. Ian is eight months. Crawling, chattering, demanding attention. Also shows signs of a strong will and sense of determination. All that means is that both boys are very hard to distract from what they want.
The problem with a slightly less rigorous round of treatment is that your appetite for life returns. In being less miserable, less stretched in all ways, you remember what you were doing, what you had planned, your ambitions before the news broke over you.
For example, this year, I turn forty. The plan was to have my precious, healthy baby and then get fit and fabulous for forty. Birthday to be marked by kid-free international travel and perhaps nice dinners with friends or family.
Ian is precious and healthy. The rest of the plan slipped through my fingers. But I feel just well enough to have a sense of something that is a cross between remorse and guilt at all that I'm not doing.
It is the same at home. We completed the renovation and moved up from our basement apartment July 14. Ian was born July 15. The boxes are unpacked - mostly thanks to family - but the walls, the windows, the furnishings, the garden, all neglected. Spring comes and we still have fall leaves to rake.
I think Jim has already reconciled this aspect of our lives. He has resolved to ignore all the messes and incomplete projects. I'm just starting to notice them. New house, new baby, return to work, diagnosis, begin treatment, shift to "easy" chemo - I'm looking up and around seriously for the first time in a long time and it is frustrating.
I'm trying to will my way back into it. It isn't working but I'm trying.
Actually, the most important part of all of this, is that I am starting to regain the sense of a future. I mean my having one.
What else? Miles turns four in a week or so. Curious, strong-willed and generous. Ian is eight months. Crawling, chattering, demanding attention. Also shows signs of a strong will and sense of determination. All that means is that both boys are very hard to distract from what they want.
Tuesday, March 11, 2014
The DMV
I don't recall it, but I guess it is possible I was a whiner as a child. And if so, then, Miles is just living out a genetic gift from me. Regardless of who taught whom, it is a big day of whining.
I spent my Monday night, date night doing the bedtime scramble. No complaints as they were both happy and then tucked in by 8. Then comes the indulgent part. Jim was out of town on business so I got to watch the Caps and the Wizards play from tucked in my bed. The results weren't pretty but it was nice to engross myself in the home teams' efforts. Miles climbed upstairs early and was allowed to cuddle with Mom. Such a sweet boy. He comments on my "really short hair" and asks when it will be summer and start growing again.
Unexpectedly, today's chemo experience was like a trip to the DMV. With the DMV, going in, you should be prepared for administrative hurdles, some incompetence, possibly unwarranted attitude. You put on your patience and forbearance and bite your tongue. Why make yourself crazy fretting about the process. Head down. Get what you need and get out.
I didn't realize what I was getting into and I was ill-humored today. I walked in not wanting to be there and it did not go up from there.
With these twelve treatments, we only have an oncology visit every third trip. The oncology appointments run impressively efficiently (the physicians' time is valuable). I've never waited more than five minutes to be called. Today was our first trip in without seeing the good doctor first. (And, oh honey, we learned whose time is not valued).
We got there at 9:30. Sent to another building for paperwork. Fine. Sent to a third building for labs. Fine. That was quick and we were told it would be half an hour until infusion had the results. Fine. Jim went to get coffee. I was in no humor for college kids, so I went to infusion to wait. I let them know I was back and sat down. We watched 9:45. 10:00. 10:15. 10:30. Drift by.
At 10:45 I went to inquire about the process. I was told I'd be called when everything was ready. Yes, thank you but that wasn't my question. My question was simply how should I proceed the next ten visits to avoid this wait? I was told to go to the labs first (I did). I told to remember to check back in (I did). I was told labs take about a half an hour (or not ...). See, I should have just sat quietly. It's the DMV. There is no way for me to help improve the experience. Sit down, we will call you when we call you. We were there for a one hour drip infusion. We left after 2:00.
So, hard day on top of ill- humor. I'm not sure why. At my first infusion appointment, when I didn't know how complex our chemo friendship would be, I saw a young woman there. A pretty young thing. Probably not 35. She made an impression because she seemed so angry and so exhausted at the same time. An unspoken fuck you, world. Her wig and knit hat were askew. She was in rumpled sweats. Her body language was leave me alone. Her husband sat quietly working on his phone. I didn't understand what was happening. Obviously, I still don't but today I felt like she looked. Maybe not angry, but so over it.
What else to note? Some observations after six trips to infusion: I'm starting to recognize the Tuesday patients. There are a few other young-ish folks. Another woman, she looks younger (and tougher) than me. She wears cool motorcycle boots. An outdoorsy man my age. They both come with their spouses. We haven't talked or even nod-acknowledged the familiarity.
At our first infusion appointment I prattled nervously to Jim about the robot that brings the lab results as such a cute R2D2. Today, I heard a guy talking to his dad (he is a Tuesday regular, too) about the neat R2D2 - first trip to chemo with dad.
This is no private room for birth at Sibley. You can call it "ground floor" all day long, but the infusion center is in a basement. The infusion "rooms" are 20 or so little curtained areas, many windowless. If you get a room in the back, your phones don't work. You hear your neighbors' conversations, their parents' angst and daytime tv talk shows. The bathrooms, let's just say overused. The lighting, fluorescent.
We turn off the overhead light. We keep the tv off. We talk quietly. We try to appreciate the infusion nurses who make the program. Head down. Get what we need and get out. Wocka, wocka at the DMV.
I spent my Monday night, date night doing the bedtime scramble. No complaints as they were both happy and then tucked in by 8. Then comes the indulgent part. Jim was out of town on business so I got to watch the Caps and the Wizards play from tucked in my bed. The results weren't pretty but it was nice to engross myself in the home teams' efforts. Miles climbed upstairs early and was allowed to cuddle with Mom. Such a sweet boy. He comments on my "really short hair" and asks when it will be summer and start growing again.
Unexpectedly, today's chemo experience was like a trip to the DMV. With the DMV, going in, you should be prepared for administrative hurdles, some incompetence, possibly unwarranted attitude. You put on your patience and forbearance and bite your tongue. Why make yourself crazy fretting about the process. Head down. Get what you need and get out.
I didn't realize what I was getting into and I was ill-humored today. I walked in not wanting to be there and it did not go up from there.
With these twelve treatments, we only have an oncology visit every third trip. The oncology appointments run impressively efficiently (the physicians' time is valuable). I've never waited more than five minutes to be called. Today was our first trip in without seeing the good doctor first. (And, oh honey, we learned whose time is not valued).
We got there at 9:30. Sent to another building for paperwork. Fine. Sent to a third building for labs. Fine. That was quick and we were told it would be half an hour until infusion had the results. Fine. Jim went to get coffee. I was in no humor for college kids, so I went to infusion to wait. I let them know I was back and sat down. We watched 9:45. 10:00. 10:15. 10:30. Drift by.
At 10:45 I went to inquire about the process. I was told I'd be called when everything was ready. Yes, thank you but that wasn't my question. My question was simply how should I proceed the next ten visits to avoid this wait? I was told to go to the labs first (I did). I told to remember to check back in (I did). I was told labs take about a half an hour (or not ...). See, I should have just sat quietly. It's the DMV. There is no way for me to help improve the experience. Sit down, we will call you when we call you. We were there for a one hour drip infusion. We left after 2:00.
So, hard day on top of ill- humor. I'm not sure why. At my first infusion appointment, when I didn't know how complex our chemo friendship would be, I saw a young woman there. A pretty young thing. Probably not 35. She made an impression because she seemed so angry and so exhausted at the same time. An unspoken fuck you, world. Her wig and knit hat were askew. She was in rumpled sweats. Her body language was leave me alone. Her husband sat quietly working on his phone. I didn't understand what was happening. Obviously, I still don't but today I felt like she looked. Maybe not angry, but so over it.
What else to note? Some observations after six trips to infusion: I'm starting to recognize the Tuesday patients. There are a few other young-ish folks. Another woman, she looks younger (and tougher) than me. She wears cool motorcycle boots. An outdoorsy man my age. They both come with their spouses. We haven't talked or even nod-acknowledged the familiarity.
At our first infusion appointment I prattled nervously to Jim about the robot that brings the lab results as such a cute R2D2. Today, I heard a guy talking to his dad (he is a Tuesday regular, too) about the neat R2D2 - first trip to chemo with dad.
This is no private room for birth at Sibley. You can call it "ground floor" all day long, but the infusion center is in a basement. The infusion "rooms" are 20 or so little curtained areas, many windowless. If you get a room in the back, your phones don't work. You hear your neighbors' conversations, their parents' angst and daytime tv talk shows. The bathrooms, let's just say overused. The lighting, fluorescent.
We turn off the overhead light. We keep the tv off. We talk quietly. We try to appreciate the infusion nurses who make the program. Head down. Get what we need and get out. Wocka, wocka at the DMV.
Tuesday, March 4, 2014
Back in the (chemo) saddle
A quick three week review. First week, of February 11, last jumbo treatment day. Intense chemo side effects, worst nausea of program.
Second week, we will call that the week of sadness and move on. Or we will in a minute. The medical professionals assure me this is "tough stuff" and it is totally appropriate to wrestle with it, be sad about it and medicate away some of the lows. For me, for now, that is not the answer. I reserve the right to change my mind. Back to the review.
Week three was the real deal. I felt good. I found some levity. I insincerely but kindly smiled my way through the four year old girl loudly asking me why I looked like a pirate at a school party. (I'll be reviewing my scarf tying technique). We went to a concert. We went out to dinner. We had a little birthday gathering with friends for Jim. We went to friend's for the after party dance party. We got our taxes done. We watched the Oscars. We had a snow day. Jim and I drank nice wine, cooked a lavish meal, had a festive family dinner followed by strawberry shortcake birthday cake.
The respite of course made today more difficult. I cried a bit while we waited for the good doctor. I think Jim would agree - it was just so nice to see me and our routines again. We met with the doctor for a long time and heard about a whole series of new and delightful side effects. Little things like blurry vision (those bitchy steroids) or numbness in hands and feet (this particular toxin). Plus the regulars, nausea and hair loss. Oh chemo, you are a tough gal to love.
So, today. It was supposed to be short, but wasn't. We were at Georgetown from 9 until 3:30. They give four or five pre-meds to prevent side effects, nausea, heartburn, nausea. And Benadryl, so I was not much company for Jim. I napped most of the afternoon, but felt good enough to help with bedtime and have dinner with Jim. I am hopeful for tomorrow. Despite the long day, today was much easier than previous treatment days.
In the meantime, both boys are in their beds. I mean, as in at this very minute. Ian, the one who doesn't walk yet, stays in his all night. Miles not so much. Of course in sleeping training Ian, we inadvertently created a night feeder. This is why I have a dozen books on rearing kids. They are tricky little buggers. Feel free to let email me with your tricks.
Thank you again for all your support, love and energy. And meals, cards, flowers, yoga sessions, calls and kindness. We may not have the chance to return your generosity but we promise to pay it forward.
Second week, we will call that the week of sadness and move on. Or we will in a minute. The medical professionals assure me this is "tough stuff" and it is totally appropriate to wrestle with it, be sad about it and medicate away some of the lows. For me, for now, that is not the answer. I reserve the right to change my mind. Back to the review.
Week three was the real deal. I felt good. I found some levity. I insincerely but kindly smiled my way through the four year old girl loudly asking me why I looked like a pirate at a school party. (I'll be reviewing my scarf tying technique). We went to a concert. We went out to dinner. We had a little birthday gathering with friends for Jim. We went to friend's for the after party dance party. We got our taxes done. We watched the Oscars. We had a snow day. Jim and I drank nice wine, cooked a lavish meal, had a festive family dinner followed by strawberry shortcake birthday cake.
The respite of course made today more difficult. I cried a bit while we waited for the good doctor. I think Jim would agree - it was just so nice to see me and our routines again. We met with the doctor for a long time and heard about a whole series of new and delightful side effects. Little things like blurry vision (those bitchy steroids) or numbness in hands and feet (this particular toxin). Plus the regulars, nausea and hair loss. Oh chemo, you are a tough gal to love.
So, today. It was supposed to be short, but wasn't. We were at Georgetown from 9 until 3:30. They give four or five pre-meds to prevent side effects, nausea, heartburn, nausea. And Benadryl, so I was not much company for Jim. I napped most of the afternoon, but felt good enough to help with bedtime and have dinner with Jim. I am hopeful for tomorrow. Despite the long day, today was much easier than previous treatment days.
In the meantime, both boys are in their beds. I mean, as in at this very minute. Ian, the one who doesn't walk yet, stays in his all night. Miles not so much. Of course in sleeping training Ian, we inadvertently created a night feeder. This is why I have a dozen books on rearing kids. They are tricky little buggers. Feel free to let email me with your tricks.
Thank you again for all your support, love and energy. And meals, cards, flowers, yoga sessions, calls and kindness. We may not have the chance to return your generosity but we promise to pay it forward.
Tuesday, February 25, 2014
A Treatment-free Tuesday
Where to start. There was a rule in my house growing up - if you have nothing nice to say, don't say anything at all.
What's the news? I've been busy at work and getting by. I have mostly kept to myself. What can I say, cancer is a lonely path.
It seems I should be happy to be done with the first portion of treatment. But all the sudden twelve more cycles doesn't sound so great. Even if it is "easier" it is still chemo. And three months.
What's the good news? Ian is sleeping is his bed. Whole nights and naps. Sunday night was the first time since we moved in May that there was a post bedtime, all quiet in the household. It was like we got two hours added to our day.
What else good? Jim's back from five long days in New York. Monday night, date night, we spent with our friend JT and about 17,000 swooning ladies.
Jim's birthday approaches. (The Oscars, too.).
Today is the first day fifteen without treatment. It might be the threshold for good living beyond the chemo eclipse. I have good energy. My humor is coming back. I remember this person. So we will reminisce for a few minutes and then start to prepare for next Tuesday.
What's the news? I've been busy at work and getting by. I have mostly kept to myself. What can I say, cancer is a lonely path.
It seems I should be happy to be done with the first portion of treatment. But all the sudden twelve more cycles doesn't sound so great. Even if it is "easier" it is still chemo. And three months.
What's the good news? Ian is sleeping is his bed. Whole nights and naps. Sunday night was the first time since we moved in May that there was a post bedtime, all quiet in the household. It was like we got two hours added to our day.
What else good? Jim's back from five long days in New York. Monday night, date night, we spent with our friend JT and about 17,000 swooning ladies.
Jim's birthday approaches. (The Oscars, too.).
Today is the first day fifteen without treatment. It might be the threshold for good living beyond the chemo eclipse. I have good energy. My humor is coming back. I remember this person. So we will reminisce for a few minutes and then start to prepare for next Tuesday.
Sunday, February 16, 2014
Lazy Sunday
I'm enjoying a quiet and a bit forgotten tradition of a weekend day spent at home puttering without an agenda. Or Ian and I are. At one point, we were going to grocery shop and cook and accomplish things. We've given that up.
Jim and Miles were ambitious enough to go skiing. We agreed that a few hours in the car and a few hours in a lodge were not ideal for Ian and me, so we opted for a day at home. But I haven't spent a full day with either one or both of the boys since we got this news, much less started treatment.
I realize a day with one child doesn't sound taxing, but my energy levels are only remarkable for their absence.
I should note that although this diagnosis has afforded me more time at home, its not exactly quality time. I see a lot of the boys, but I spend a fair amount of it laying down, feeding bottles, reading books and then turning the boys back over to Jim, Mom or Dani.
Miles has learned this new pattern. The other day he wanted to play pirates and offered to lay a blanket on the floor for me so I could rest while we played. I look forward to realizing one day that he has unlearned this as quickly as he quietly learned it.
Anyway, I have also had more time with Ian, but not large chunks of uninterrupted time. It turns out seven months is the perfect age for a lazy Sunday. Neither of us are particularly mobile. We have a similar eat, snack, nap, lay around and play schedule. He enjoys the Olympics.
For the record, so has Miles. Miles and I were up early for the Team USA v. Team Russia game at 7:30 on Saturday morning. Miles, an Ovechkin loyalist, was not impressed with Oshie or the outcome.
As for today, we are also working on sleep training. Both ambitious and unpleasant. Ian has indicated he would prefer to continue to sleep in his car seat for all naps and nighttime sleeps. Jim and I have a couple of issues with that. The obvious - between Ian and Miles - we have a lot of company, crying and talking throughout the nights. Less obvious unless you've seen him recently - Ian is rather huge and can spin and flip his way out of the car seat unless buckled in. It is bad enough to have a seven month old sleeping in a car seat every night, but it really seems wrong when you have to buckle him into to bed. So, my lazy Sunday does have some work involved too.
What else? I'm looking forward to two weeks without treatment. I'm looking forward to some energy. I'm hopeful the next cycle of chemo will get me closer to who I was. As I complained to Jim in a steriod-rage the other night, I haven't felt like myself for one minute since mid-day December 9. That is a long time to not feel like yourself.
Jim tells me he is proud of how I'm handling this. That I'm faking it well. That no one at our valentine's lunch would ever know what I was going through. This is a consolation because I am a private person. But it is a small consolation.
Sleep training is a mixed bag. We've had success. Two very short naps in his crib. None in his car seat. But he has also only managed to fall asleep face down into his lovey. Which of course requires that I spend his nap time ear pressed to monitor and peering nervously into his room. At least I don't have to fake this part.
Jim and Miles were ambitious enough to go skiing. We agreed that a few hours in the car and a few hours in a lodge were not ideal for Ian and me, so we opted for a day at home. But I haven't spent a full day with either one or both of the boys since we got this news, much less started treatment.
I realize a day with one child doesn't sound taxing, but my energy levels are only remarkable for their absence.
I should note that although this diagnosis has afforded me more time at home, its not exactly quality time. I see a lot of the boys, but I spend a fair amount of it laying down, feeding bottles, reading books and then turning the boys back over to Jim, Mom or Dani.
Miles has learned this new pattern. The other day he wanted to play pirates and offered to lay a blanket on the floor for me so I could rest while we played. I look forward to realizing one day that he has unlearned this as quickly as he quietly learned it.
Anyway, I have also had more time with Ian, but not large chunks of uninterrupted time. It turns out seven months is the perfect age for a lazy Sunday. Neither of us are particularly mobile. We have a similar eat, snack, nap, lay around and play schedule. He enjoys the Olympics.
For the record, so has Miles. Miles and I were up early for the Team USA v. Team Russia game at 7:30 on Saturday morning. Miles, an Ovechkin loyalist, was not impressed with Oshie or the outcome.
As for today, we are also working on sleep training. Both ambitious and unpleasant. Ian has indicated he would prefer to continue to sleep in his car seat for all naps and nighttime sleeps. Jim and I have a couple of issues with that. The obvious - between Ian and Miles - we have a lot of company, crying and talking throughout the nights. Less obvious unless you've seen him recently - Ian is rather huge and can spin and flip his way out of the car seat unless buckled in. It is bad enough to have a seven month old sleeping in a car seat every night, but it really seems wrong when you have to buckle him into to bed. So, my lazy Sunday does have some work involved too.
What else? I'm looking forward to two weeks without treatment. I'm looking forward to some energy. I'm hopeful the next cycle of chemo will get me closer to who I was. As I complained to Jim in a steriod-rage the other night, I haven't felt like myself for one minute since mid-day December 9. That is a long time to not feel like yourself.
Jim tells me he is proud of how I'm handling this. That I'm faking it well. That no one at our valentine's lunch would ever know what I was going through. This is a consolation because I am a private person. But it is a small consolation.
Sleep training is a mixed bag. We've had success. Two very short naps in his crib. None in his car seat. But he has also only managed to fall asleep face down into his lovey. Which of course requires that I spend his nap time ear pressed to monitor and peering nervously into his room. At least I don't have to fake this part.
Tuesday, February 11, 2014
A twisted friend
Today we completed the first course of intense treatment. Done, goodbye, gone. May I never have to do it again. Let me say it again, with all of your and my prayers, blessings, thoughts and vibes, may I never have to do it again.
I mean it one thousand percent. Except chemo is a twisted friend. Chemo is awful. And she is the recovery. Chemo is arduous. But she is the path to health. To me, it is chemo crack. And by that I mean this horrible thing you never want to do, but once you start you are afraid to stop. Chemo stops the cancer, so why stop chemo?
And I'm not done. I have go back for twelve more weeks in three weeks. But it is difficult to want so desperately to be done with something but also afraid of my body betraying me. Hold still. Be gone. Don't grow back. Or anywhere else. But thank you for nourishing me and my babies, generally keeping me in good health, responding to the chemo, stretching, growing, carrying and keeping me. And not throwing up - not once yet in treatment for the record. See, it is complicated.
Anyway, I thought I'd feel triumphant today. I decidedly do not.
Not sure what flat affect means to you. To Jim and me, it describes someone or thing without discernible character or personality. When we were house-hunting we found a lot of houses that made no impression on us. Flat affect. Occasionally, we have a waiter who fits the bill.
These days, it's us. After treatment today, I asked Jim what word he'd use to describe how we are. His first choice was stabilized. His second was flat affect. It's a good choice. We aren't too sad. We aren't too happy. We've become that turtle family, the Slowskis.
My word choice was depressed. No, not really, Mom. Just blue. Or maybe more positively blah. On the way home from treatment, Jim and I made a list of things to be grateful for to help me adjust my mindset. Our list included boys' good health (minus two cases of croup last week and one case, so far, of pink eye this week); Jim's health; amazing support from you peeps; our families; Whole Foods mashed potatoes; NCRC; good jobs; and cookies. I am cultivating my gratitude to adjust my attitude.
One of my medical professionals (I have so many!) pointed out to me that cancer takes you where you are. Support from family? Friends? Faith? Community? Finances? Fortitude? It just comes regardless. And so I am also so touched by and grateful for your help. It matters to us. And it makes a difficult thing easier.
I mean it one thousand percent. Except chemo is a twisted friend. Chemo is awful. And she is the recovery. Chemo is arduous. But she is the path to health. To me, it is chemo crack. And by that I mean this horrible thing you never want to do, but once you start you are afraid to stop. Chemo stops the cancer, so why stop chemo?
And I'm not done. I have go back for twelve more weeks in three weeks. But it is difficult to want so desperately to be done with something but also afraid of my body betraying me. Hold still. Be gone. Don't grow back. Or anywhere else. But thank you for nourishing me and my babies, generally keeping me in good health, responding to the chemo, stretching, growing, carrying and keeping me. And not throwing up - not once yet in treatment for the record. See, it is complicated.
Anyway, I thought I'd feel triumphant today. I decidedly do not.
Not sure what flat affect means to you. To Jim and me, it describes someone or thing without discernible character or personality. When we were house-hunting we found a lot of houses that made no impression on us. Flat affect. Occasionally, we have a waiter who fits the bill.
These days, it's us. After treatment today, I asked Jim what word he'd use to describe how we are. His first choice was stabilized. His second was flat affect. It's a good choice. We aren't too sad. We aren't too happy. We've become that turtle family, the Slowskis.
My word choice was depressed. No, not really, Mom. Just blue. Or maybe more positively blah. On the way home from treatment, Jim and I made a list of things to be grateful for to help me adjust my mindset. Our list included boys' good health (minus two cases of croup last week and one case, so far, of pink eye this week); Jim's health; amazing support from you peeps; our families; Whole Foods mashed potatoes; NCRC; good jobs; and cookies. I am cultivating my gratitude to adjust my attitude.
One of my medical professionals (I have so many!) pointed out to me that cancer takes you where you are. Support from family? Friends? Faith? Community? Finances? Fortitude? It just comes regardless. And so I am also so touched by and grateful for your help. It matters to us. And it makes a difficult thing easier.
Sunday, February 9, 2014
These days
It was just an up and down week. And I think that is just the way the weeks are going to be. I had hoped that after stabilizing the grief there might be a productive, positive, period of incandescent recovery.
Instead, it is just a series of days. Some are pretty good. Some pretty bad.
I also thought we'd march through this with some dignity and grace. But that was too ambitious. We'll simply march through this.
It is hard to explain how limited we are. One example is our plan to travel to Florida for the holiday weekend. Warm weather, sunshine and a pool were calling us south. We struggled for weeks to finalize the plans. It finally dawned on us that it was just too hard. It would take us too far from the little arc of our post-diagnosis days.
We are socializing, living, working and recovering in this minature version of our lives. We see fewer people. We exhaust more easily. We stick around the neighborhood. We went out to dinner last night and we were tired and ready for bed well before the check arrived.
I thought I'd feel triumphant heading into the fourth and final of the first series of chemo. I don't. Instead I'm anxious and tense.
Today, to comfort ourselves, we puttered around the house most of the day. Brunch with friends. Naps for everyone. All four of us went out for a drive in the snow and a trip to the grocery store.
I continued a little ritual of mine. I've been spending the Sundays before treatment making Ian's baby food. Today was sweet potatoes, green peas, yellow squash and pears.
Tomorrow is a full work day. Tuesday is the last of the tough series. I have a few weeks to catch my breath and then 12 quick weeks of the "easy stuff." This will take us through Jim's birthday, Miles' birthday, my birthday, our anniversary. Through Spring. Not sure what the groundhog saw, but I see a tough Spring ahead for us.
Instead, it is just a series of days. Some are pretty good. Some pretty bad.
I also thought we'd march through this with some dignity and grace. But that was too ambitious. We'll simply march through this.
It is hard to explain how limited we are. One example is our plan to travel to Florida for the holiday weekend. Warm weather, sunshine and a pool were calling us south. We struggled for weeks to finalize the plans. It finally dawned on us that it was just too hard. It would take us too far from the little arc of our post-diagnosis days.
We are socializing, living, working and recovering in this minature version of our lives. We see fewer people. We exhaust more easily. We stick around the neighborhood. We went out to dinner last night and we were tired and ready for bed well before the check arrived.
I thought I'd feel triumphant heading into the fourth and final of the first series of chemo. I don't. Instead I'm anxious and tense.
Today, to comfort ourselves, we puttered around the house most of the day. Brunch with friends. Naps for everyone. All four of us went out for a drive in the snow and a trip to the grocery store.
I continued a little ritual of mine. I've been spending the Sundays before treatment making Ian's baby food. Today was sweet potatoes, green peas, yellow squash and pears.
Tomorrow is a full work day. Tuesday is the last of the tough series. I have a few weeks to catch my breath and then 12 quick weeks of the "easy stuff." This will take us through Jim's birthday, Miles' birthday, my birthday, our anniversary. Through Spring. Not sure what the groundhog saw, but I see a tough Spring ahead for us.
Monday, February 3, 2014
Oh, February
February in DC is cruel. It is colder, meaner, grayer than you think anything after January could be. And yet it is.
How to describe the weekend. Jim and I fighting cancer are like a two man tug-a-rope team against cancer. Except I can only pull for me and Jim has to keep pulling even when I take a break. Jim took a break this weekend and cancer snapped the rope free and we collapsed. Good to know what that looks like.
Not fair for Jim, of course, to be the one who can't take a break. But that's the thing about cancer. No one cares about fair.
So back to the weekend. We had good company, visits with friends and family. We had sunshine. We had warm days and long walks. We had huge Wiz and Caps games and wins. But it was February and it was cruel.
We are at least learning. Weekends are harder. I think because my limitations, chiefly, my energy and enthusiasm, are more obvious. And by obvious, I mean, burdensome. I don't have the bandwidth with the kids, the socializing, the chores, any else's agenda. I'm done in by 4 pm.
"Good" days are harder too. Not feeling good is easier to understand than my new version of a good day. Today, for example, is a good day. Jim and I were up all night last night with Miles with a terrible croupy cough. Four steam showers. One call to the pediatrician. Lots of crying for Mom who was trying to steer clear given her immune system. Jittery from lack of sleep, deep bone pain, still small waves of nausea. The "good" day.
I'm trying to stay positive and I feel positive. I guess what I really feel is tired. Sometimes, actually tired. And sometimes, just why me tired.
I do not mean to sound a wretch. We are fortunate. We are well fed and cared for. Thank you. Friends, family, meals, flowers, cards, gifts continue to arrive. A necklace. FOKer bracelets (let me know if you need one). Cookies. Hats. Creams. Bookmarks. Earrings. Homemade soups. Did I mention cookies?!
Wiz leading Portland in the fourth quarter. Good work week ahead. Miles on the mend. Jim holding the rope. See, it's a cruel month but a short month.
An aside: At Ian's six month appointment, we teased with the pediatrician our concern that he would be developmentally delayed because everyone handles their grief the same way - clutching and carrying this big ole baby around like he was a newborn. At the end of the appointment, she actually sat him up on the table to evaluate him properly. You all are going to have to work harder. He sits, grabs, tries to crawl like he hasn't been adequately spoiled yet.
How to describe the weekend. Jim and I fighting cancer are like a two man tug-a-rope team against cancer. Except I can only pull for me and Jim has to keep pulling even when I take a break. Jim took a break this weekend and cancer snapped the rope free and we collapsed. Good to know what that looks like.
Not fair for Jim, of course, to be the one who can't take a break. But that's the thing about cancer. No one cares about fair.
So back to the weekend. We had good company, visits with friends and family. We had sunshine. We had warm days and long walks. We had huge Wiz and Caps games and wins. But it was February and it was cruel.
We are at least learning. Weekends are harder. I think because my limitations, chiefly, my energy and enthusiasm, are more obvious. And by obvious, I mean, burdensome. I don't have the bandwidth with the kids, the socializing, the chores, any else's agenda. I'm done in by 4 pm.
"Good" days are harder too. Not feeling good is easier to understand than my new version of a good day. Today, for example, is a good day. Jim and I were up all night last night with Miles with a terrible croupy cough. Four steam showers. One call to the pediatrician. Lots of crying for Mom who was trying to steer clear given her immune system. Jittery from lack of sleep, deep bone pain, still small waves of nausea. The "good" day.
I'm trying to stay positive and I feel positive. I guess what I really feel is tired. Sometimes, actually tired. And sometimes, just why me tired.
I do not mean to sound a wretch. We are fortunate. We are well fed and cared for. Thank you. Friends, family, meals, flowers, cards, gifts continue to arrive. A necklace. FOKer bracelets (let me know if you need one). Cookies. Hats. Creams. Bookmarks. Earrings. Homemade soups. Did I mention cookies?!
Wiz leading Portland in the fourth quarter. Good work week ahead. Miles on the mend. Jim holding the rope. See, it's a cruel month but a short month.
An aside: At Ian's six month appointment, we teased with the pediatrician our concern that he would be developmentally delayed because everyone handles their grief the same way - clutching and carrying this big ole baby around like he was a newborn. At the end of the appointment, she actually sat him up on the table to evaluate him properly. You all are going to have to work harder. He sits, grabs, tries to crawl like he hasn't been adequately spoiled yet.
Saturday, February 1, 2014
Big bad night
"I don't want to hear about how special you are." That about sums up how hard fucking cancer is. Gems like that from your A team.
More gems. People telling me that they hear my prognosis is good. Not sure where you heard it, but to be clear, I haven't.
I am strong and I can wage this fight, but please don't mistake my ability to fight for an ability to help anyone but my boys through.
Clothes dont fit. Completely bald. Taste-buds blown out. Lips scorched. Unrelenting fatigue. 13 more weeks, best case, of fucking chemo. Nausea. Bone pains. Being brave for the whole family. Carrying others on my back. Trying to be a trooper. Meeting other's needs. If all goes well, I get to have surgery and radiation and a lifetime of scary, stressful follow up. And that seems like a monumental if these days.
I have a six month old and a three year old. What the fuck. I want to raise them, not just have them.
Bad night.
Friday, January 31, 2014
Going the distance
Oh, the fatigue. I think "they" had mentioned it. They being the assortment of professionals and peeps with experience. Nausea is under control but the fatigue is unrelenting. I was stayed in bed until 5 yesterday. Up for dinner and a visit with a friend. Who we had to shoo out the door so I could retreat back to the Jelly Lounge.
The new Jelly Lounge is the third floor oasis/bedroom with aforementioned tv. The old Jelly Lounge was the name of the (Jim-Kelly) engagement party friends and family hosted for us - in friend's awesome party room with the balcony overlooking the Chinatown arch - in 2008.
Today, the fatigue continued. A meeting at school to talk about Miles, these boys and life. Collapsed at home, followed by work then a social call. I can only hope the energy is back this weekend before two days without childcare...
Back to today. Talk about going the distance. A girlfriend from forever flew in from Boston to cover a play date slot on the "what friends do" site. I was too greedy of course and insisted she spend the time with me too. Four boys between 3 1/2 and 6 months. For them it was a wild, trucks, cars, zany, hockey-wrestle-rrific, giggle and goo-goo-ga-ga filled afternoon. They will sleep well tonight.
Apparently, the ladies didn't do as good of a job. Miles pointed out that the mommies didn't talk. When I corrected him - we talked nonstop- he clarified. No, no, you never laughed. Well just go ahead and add guilt to the mix. In my defense, it is hard to be so damn fatigued, catching up on how your life is transformed in every way you never wanted it to be, and also have a good laugh or two. Maybe tomorrow.
What else? Mom and Rick leave for February in Florida... Soon. When she gets over the nerves about leaving Jim and me to our own devices. I think we will manage but just in case I've spoken for all of you and said you will help with the week of February 11. See, Mom, it is okay. You can go. They've got us covered.
A couple of other notes. We heard bad news about a friend tonight so although it is a big Friday night, Jim is sad and retired to the Jelly Lounge. He reports he has nothing nice to say. I'll note that the cat blog got a lot of rave and nervous (as in don't let her turn you into a cat man) comments. I'll post the pictures of him cuddled with the cat formerly known as Leo soon:).
It is 9pm all the boys are still awake, and two are weary and weepy. Forget the distance, time to call it a day.
Wednesday, January 29, 2014
Camp Wocka Wocka
Monday was date night. Jim and I went out for an early dinner at Indique. We order take out enough from Indique that dining in felt like catching up with old friends.
Treatment Tuesday. A visit with the Good Doctor who is pleased with the progress (shrinking). Then an appointment with the genetic counselor. Ahh, teaching hospitals. I had a student practitioner. She needed more practice. And I would have preferred she didn't gain it with me. These was an important and sensitive discussion - my risk for related or other cancers; my boys' risks for hereditary and childhood cancers - and they were not particularly well handled. I was not the easiest customer. A few "what are you talking about?" and "this seems like a bad sales pitch -why are you trying to hand me some pharmaceutical lab brochure?" later, we got it sorted out. And I spit in a bunch of tubes. Genetic testing is a breeze compared to the diagnostic testing.
Then to infusion. Such a nice word for a toxic injection. Infusion is a step to get through. It is slow. There is a lot to see that could scare you. It is not a lovely space. But the nurses are and where else would we rather be.
On to the interpersonal notes - Jim (who as I've mentioned always turned his homework on-time and didnt skip class) got an A on Tuesday. He brought our newest addiction (we quit Downton when it decided violence against women was a good Sunday night plot twist) Orange is the New Black. I was in a room with a bed instead of a chair and we sat in the bed together, watched our Orange, ate snacks, and welcomed the toxic drip. Camp wocka, wocka baby. When the nurses passing in the hall saw Jim snuggled in it was all puppy dog eyes.
Miles is happily back into a full week of school after a week of holidays and snow days. Ian had his six month appointment - he is thriving. Born into the 10th percentile, he is now bursting through the 50 to 90th.
I am fine. I worked from home this morning. I am fatigued and not feeling super. Tonight will be early to bed. Probably not early to rise tomorrow. But so far, chemo malaise but not eclipse.
Sunday, January 26, 2014
Into the new normal
This was a mixed week. It was great to get back into the office and I was busy.
Some days were easy to get out the door and feel like myself. Some not.
Friday was tough mentally. Saturday was tough physically. Focusing on the physical, I wasn't prepared for the pain associated with hair loss. After several days of physical discomfort - best described as each hair shaft feeling like a splinter in the skin when anything grazed against the grain - I finally dug around online and learned that this was a common side effect. After a 1 blade and a lot of cooling lotion, I am much more comfortable and more fully GI Kelly.
A funny note about that - last night Miles told me he wished his hair was long like mine. Hmmm. When I asked why he said he wanted to look like me. I reassured him he did and left it at that.
It takes some work to convince myself that this is what recovery looks like. Mostly, I think it is time for me to just keep my head down and keep moving forward. I'm not a runner but this must be what marathon training is like. Lots of one foot in front of the other. And so on.
We are having a "normal" weekend. Jim took Miles to the Monster Jam show at Verizon Center. So normal. I went to a movie with a girlfriend. Nice to find some time in the schedule.
Ian is back. Coos. Big belly laughs. The wide-open mouth face-plant all moms generously interpret as a kiss.
The new normal isn't bad it just hard to believe it is ours.
Tuesday, January 21, 2014
Hard to be Jim
Things change quickly around here and it might be hard to be Jim.
First the angry day.
It was Monday and it was to be a day date. The plan was to take a walk on the Mall and go to the National Gallery. A little exercise and art to help keep everything in perspective and a trial run as the wigged me.
The (my) winds changed and so did the plan. Downgraded from Mall to mall. Jim handled it with a fair amount of grace given what he had on his hands which was an all of the sudden very angry Kelly.
The trial run was a mess. The saint at the hair salon/wig shop had a much softer touch with a wig than I do. When I put it on, it geniuinely looked like a bad SNL skit and it just sucks. It sucks to not feel like you can put yourself together. Anyway, I was angry and took it all out on Jim.
After I spent the first two hours of my day date ruining my day date, Jim helped me turn it around. We got out of the house. We puttered around Nordstorms. And Jim put his good taste and good eye to work and we engaged in a healthy amount of retail therapy. Thank you, Jim.
We ended the afternoon with a late lunch, early dinner and hunkered down for a favorite of mine - snow day watch.
Today was a snow day - how could it not be good? Dani watched the boys. Jim and I worked from home. Jim resisted his strong need to make me healthy winners like kale smoothies and delivered chemo-winners like mashed potatoes, chilequiles and hot ham and cheese sandwiches.
People, I do a lot of eating. Sure, the hair is gone, but so are the cheekbones. I've been promised on good authority that there will be a reckoning (hair returns, weight goes). That is something to look forward to.
I feel like I should note for your sake - don't fret where I am. By the time you've read it, I'm through it. I got an email today about the 3 blade and hair loss. Maybe its the process, maybe its the steriods, I race through these experiences and my emotions and then I am spent and they are gone.
So, I'm not sure this will translate, but a funny note about Jim's kindness for the cat lovers (which he is decidedly not). I was hungry at lunchtime today and Jim was working and wanted me to fend for myself. Rather than fend for myself, I just explained to Jim that my plan was to walk downstairs and pace and cauterwaul in the kitchen until he finally came and fed me. Poor man. But he does make a lovely lunch.
First the angry day.
It was Monday and it was to be a day date. The plan was to take a walk on the Mall and go to the National Gallery. A little exercise and art to help keep everything in perspective and a trial run as the wigged me.
The (my) winds changed and so did the plan. Downgraded from Mall to mall. Jim handled it with a fair amount of grace given what he had on his hands which was an all of the sudden very angry Kelly.
The trial run was a mess. The saint at the hair salon/wig shop had a much softer touch with a wig than I do. When I put it on, it geniuinely looked like a bad SNL skit and it just sucks. It sucks to not feel like you can put yourself together. Anyway, I was angry and took it all out on Jim.
After I spent the first two hours of my day date ruining my day date, Jim helped me turn it around. We got out of the house. We puttered around Nordstorms. And Jim put his good taste and good eye to work and we engaged in a healthy amount of retail therapy. Thank you, Jim.
We ended the afternoon with a late lunch, early dinner and hunkered down for a favorite of mine - snow day watch.
Today was a snow day - how could it not be good? Dani watched the boys. Jim and I worked from home. Jim resisted his strong need to make me healthy winners like kale smoothies and delivered chemo-winners like mashed potatoes, chilequiles and hot ham and cheese sandwiches.
People, I do a lot of eating. Sure, the hair is gone, but so are the cheekbones. I've been promised on good authority that there will be a reckoning (hair returns, weight goes). That is something to look forward to.
I feel like I should note for your sake - don't fret where I am. By the time you've read it, I'm through it. I got an email today about the 3 blade and hair loss. Maybe its the process, maybe its the steriods, I race through these experiences and my emotions and then I am spent and they are gone.
So, I'm not sure this will translate, but a funny note about Jim's kindness for the cat lovers (which he is decidedly not). I was hungry at lunchtime today and Jim was working and wanted me to fend for myself. Rather than fend for myself, I just explained to Jim that my plan was to walk downstairs and pace and cauterwaul in the kitchen until he finally came and fed me. Poor man. But he does make a lovely lunch.
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