It's super Tuesday.
We are a bit anxious but ready to go.
I am very curious who is going to come out the other side of this.
There has been a lot of swelling, but it seems that it's reduced and I'm thinking a little more clearly. My focus is getting through the day.
I am hungry. And I would like a nice coffee. Obviously I have my priorities straight.
We're getting good care and support. We'll update you when we're out of the most current cancer eclipse.
Tuesday, January 13, 2015
Sunday, January 11, 2015
Surgery Tuesday
First off, thank you one and all for the outpouring of love, concern and generosity over the past few days. We are so grateful and fortunate, again. And know that even if Kelly and I don't respond to emails or texts or calls immediately or at all, please keep the messages of encouragement, of humor, of solidarity in your shared anger and sadness coming.
Kelly is now scheduled to have surgery to remove a brain tumor on Tuesday. Her neurosurgeon and oncologist will not know if it's breast cancer until we get the pathology on the tumor, but we're told it's likely breast cancer and is likely triple negative. After surgery, she'll be in the hospital, recovering for roughly 5-7 days and then home recuperating. Surgery will be followed by some period of radiation, still to be determined.
It's unknown if this tumor was there all along or if it's something new. Apparently the brain mostly protects itself from allowing chemo to penetrate it, so it's possible that it wouldn't have been addressed during Kelly's rounds of chemo.
Until Tuesday, Kelly will remain in the neuro ICU at Georgetown Hospital. But she is on 'step down', meaning that the medications to prevent seizures and reduce swelling in her brain have improved her condition. Her cognition is sharper and she hasn't had any sharp headaches, which means that the swelling has decreased presumably.
During this time, we're also waiting on the results of a PET scan from the neck down. Her oncologist ordered the scan to find out if the brain tumor is an isolated issue, or if there's something larger going on. We should know more tomorrow (Monday). Needless to say, please shine that light, send positive thoughts, keep us in your prayers, whatever it takes.
Many of you have asked about our spirits. That's a tough one. It's minute by minute. It's everything all at once. Not defeated, definitely very bruised, confused...is this really happening again? Trying to find humor and reason for hope. Yet overwhelmed and daunted by so many hurdles, so many unknowns, so many questions. We felt like we had a handle on our future again. We were set to go skiing with our good friends in a week. Putting 2014 in the rear view mirror. "Jelly" was getting back on track.
And then there are 2 little boys who make us tear up and smile at the same time, just thinking about them. They're both sweet and good and joyful, and give us the strength to keep on. Miles made a visit to Mama at the hospital this morning, and Ian is going to stop in tomorrow. Family and friends are jumping in to make sure that they're well taken care of, having fun on play dates, and more.
I'm going to continue to update Kelly's blog until she can take over again. Her wit and humor and raw honesty will be back, promise. I'm going to do my very, very best to make sure that happens.
Jim
Kelly is now scheduled to have surgery to remove a brain tumor on Tuesday. Her neurosurgeon and oncologist will not know if it's breast cancer until we get the pathology on the tumor, but we're told it's likely breast cancer and is likely triple negative. After surgery, she'll be in the hospital, recovering for roughly 5-7 days and then home recuperating. Surgery will be followed by some period of radiation, still to be determined.
It's unknown if this tumor was there all along or if it's something new. Apparently the brain mostly protects itself from allowing chemo to penetrate it, so it's possible that it wouldn't have been addressed during Kelly's rounds of chemo.
Until Tuesday, Kelly will remain in the neuro ICU at Georgetown Hospital. But she is on 'step down', meaning that the medications to prevent seizures and reduce swelling in her brain have improved her condition. Her cognition is sharper and she hasn't had any sharp headaches, which means that the swelling has decreased presumably.
During this time, we're also waiting on the results of a PET scan from the neck down. Her oncologist ordered the scan to find out if the brain tumor is an isolated issue, or if there's something larger going on. We should know more tomorrow (Monday). Needless to say, please shine that light, send positive thoughts, keep us in your prayers, whatever it takes.
Many of you have asked about our spirits. That's a tough one. It's minute by minute. It's everything all at once. Not defeated, definitely very bruised, confused...is this really happening again? Trying to find humor and reason for hope. Yet overwhelmed and daunted by so many hurdles, so many unknowns, so many questions. We felt like we had a handle on our future again. We were set to go skiing with our good friends in a week. Putting 2014 in the rear view mirror. "Jelly" was getting back on track.
And then there are 2 little boys who make us tear up and smile at the same time, just thinking about them. They're both sweet and good and joyful, and give us the strength to keep on. Miles made a visit to Mama at the hospital this morning, and Ian is going to stop in tomorrow. Family and friends are jumping in to make sure that they're well taken care of, having fun on play dates, and more.
I'm going to continue to update Kelly's blog until she can take over again. Her wit and humor and raw honesty will be back, promise. I'm going to do my very, very best to make sure that happens.
Jim
Saturday, January 10, 2015
This is Jim, writing for Kelly. I'm writing because Kelly's at Georgetown Hospital's Neuro ICU. Over the past couple of weeks, she's been having sharp headaches, nausea and confusion. She was rushed to the hospital yesterday, after suffering confusion and difficulty concentrating at work (and not in the procrastination kind of way). Since then, the hospital has been running a series of tests, including a CT scan and an MRI. The CT showed swelling in the left side of Kelly's brain, which is an indication that a mass could be present. This pressure from the swelling is what's causing her confusion and difficulty concentrating. The hospital admitted her overnight, and have put her on steroids to reduce the swelling as well as given anti-seizure medication. The medicine has helped reduce the swelling and consequently confusion, but now she's quite tired from lack of food. They're restricting her diet in case surgery is needed. We're now waiting for the neuro team to make their rounds and most importantly, give us the results of the MRI. Then we'll figure out a plan / course of treatment. Lots and lots of waiting in other words. We will update the blog as we know more. Lost of love.
Sunday, September 21, 2014
"No shit"
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.
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.
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.
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