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.
Tuesday, March 25, 2014
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.
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