As cancer treatment recedes into the not so distant past, I find myself with less and less to say here. There is not so much to describe, really. I run, I swim, my burns are fading. I feel physically normal! The exception would be the wierd chest muscle configuration that I feel while swimming, but in the scheme of things that seems small.
Here's a funny story: My hair has been growing in, which is nice, but very, very gray, which is not so nice. There is nothing wrong with gray hair, don't get me wrong. It's just that, at just shy of 50, I simply DO NOT want it at this time. So... Given that my hair is about half an inch long, I did not want to spend the dollars going to the salon for a color. Instead I opted for the $7.99 box of Clairol at the grocery and in about 15 minutes the deed was done. I chose medium golden brown and in hindsight I will go with plain old medium brown next time, but fortunately it will wash out in four weeks so I can regroup and try again. At least it is not gray any more. My son, who is colorblind, asked me tonight at dinner why I made my hair green. (Our dog Zoe, rest in peace, was reddish brown and white in color. When we stood outside and buried her ashes back in 2005 and forced our reticent children to say something nice about her, Tim said, "Zoe was a good dog. She was green and white," which was when we learned how he saw her all his then seven-year-old life.). Depending on the shading he sometimes sees brown properly and sometimes not. My hair is actually brownish goldish sort of, but to my boy, it's green. Every time I am in a room with him, it occurs to me that what he sees when he looks at his mother is a middle aged badly put together St. Patrick's Day partier, and every time this occurs to me, I'm forced to smile.
I call myself post-cancer treatment even though I still have Herceptin infusions and will begin taking Tamoxifen this week, but I seem mentally to be in the typical post-treatment that I've read about. I'll give you a little list of the feelings through which I fluctuate in any given couple of hours:
Relieved
Anxious
Grateful
Full blown panicked
Sad
Depressed
Giddy
Afraid
Focussed
Unfocussed
Worried
Lucky
Happy
Sense of dread and/or impending doom
I'm sure there are more. The social worker at the hospital in Portland gave me a bunch of breathing exercises to do to calm myself. They really do help, sort of. So onward and inward in an attempt to re-enter some iteration of a normal life.
Monday, April 29, 2013
Saturday, April 20, 2013
Marathon
Well, it's been a while. Last week I saw a death notice in the paper for Judy's (van person) husband. I knew he had emphysema and was pretty compromised. Judy had her last radiation the day after I did, and a few days later her death notice appeared as well. I wasn't shocked that she died; she certainly had no illusions about her chances. I was shocked that she died so quickly. I am sad that she spent half of the days of her last three weeks riding the f-ing van instead of doing something else. Every day I have been looking for a notice about a service for her, but I haven't seen anything. Her daughter is my age, and has just lost both her parents in the space of a week. Judy seemed to have a lot of organizing she was trying to do, for her daughter and her husband, and her time of doing that, which ostensibly the radiation was supposed to prolong, was cut short.
I know that many people all over the world live daily with the fear and the reality of the horrific scene in Boston this week, its anticipation, its occurence, its aftermath. But I have never been in a war zone. I have, however, been at a marathon finish, and so my feelings about it spring from there. In 2009 I ran a marathon. The last several miles felt a lot like labor and childbirth. It was painful, disorienting, and strangely ecstatic all at the same time. When I finished and stopped running I started crying. What my body and my brain were doing at that point were completely out of my hands. After about 20 miles of exertion, a body has used up all of its store of calories, no matter what you put into it along the way, and the disorientation during those last miles is a biproduct of this physiological process. It is, of course known as The Wall. What was immediately so sad, among so many other things, on Monday was the timing of the explosions. The elite athletes were long finished, and at a little over four hours after the start, the majority of amateur runners (like me, though not like me, as in Boston you have to qualify with a time, which in my wildest dreams I never will) would be approaching the finish, with families and friends waiting. It seems clear that somehow the young men that set up the scene must have known that four to four and a half hours would net them the most people possible. Did they also know about the state of the runners coming in? The disoriented, confused joy? The subsequent stiffening chill that the space blankets take the edge off of, but not the deep interior? I wonder if the chill will ever leave those runners and their families.
Meanwhile, back in our little outpost at the other edge of the country, I am feeling pretty back to normal physically. Ramping up swims and runs, while my radiation burns fade away. Mentally it is a different story. I stand in front of that clean slate to which I have referred many times and prepare to start something brand new. More on that later.
I know that many people all over the world live daily with the fear and the reality of the horrific scene in Boston this week, its anticipation, its occurence, its aftermath. But I have never been in a war zone. I have, however, been at a marathon finish, and so my feelings about it spring from there. In 2009 I ran a marathon. The last several miles felt a lot like labor and childbirth. It was painful, disorienting, and strangely ecstatic all at the same time. When I finished and stopped running I started crying. What my body and my brain were doing at that point were completely out of my hands. After about 20 miles of exertion, a body has used up all of its store of calories, no matter what you put into it along the way, and the disorientation during those last miles is a biproduct of this physiological process. It is, of course known as The Wall. What was immediately so sad, among so many other things, on Monday was the timing of the explosions. The elite athletes were long finished, and at a little over four hours after the start, the majority of amateur runners (like me, though not like me, as in Boston you have to qualify with a time, which in my wildest dreams I never will) would be approaching the finish, with families and friends waiting. It seems clear that somehow the young men that set up the scene must have known that four to four and a half hours would net them the most people possible. Did they also know about the state of the runners coming in? The disoriented, confused joy? The subsequent stiffening chill that the space blankets take the edge off of, but not the deep interior? I wonder if the chill will ever leave those runners and their families.
Meanwhile, back in our little outpost at the other edge of the country, I am feeling pretty back to normal physically. Ramping up swims and runs, while my radiation burns fade away. Mentally it is a different story. I stand in front of that clean slate to which I have referred many times and prepare to start something brand new. More on that later.
Thursday, April 11, 2013
Last day on the van
As I was getting off the van today for the last time, Smoking Barb said the most awesome thing to me. She said, "I hope I never see you again!" It was the nicest and best thing anyone could have said at that moment, and my only appropriate response was "Same to you!"
Tuesday, April 9, 2013
Safety nets
While I have written about my gratitude for my own safety net, I am blown away by some people's seeming lack of a safety net of any kind. A guy got on the van the other day for his six week follow up appointment. He was on the van for the first couple of days I was, finishing up his radiation cycle. This week I chatted with him a bit. He has some sort of cancer in his throat, jaw area. When he was diagnosed in Long Beach,WA he was given the choice of surgery or chemo/radiation. First of all, the whole choice thing on these big questions really, really bugs me. As a lay person, I assume and hope that the professional person I am consulting, i.e. the medical or surgical oncologist, has a pretty good idea what he/she thinks is the best course of action. I learned this after switching surgical oncologists and being given a very strong recommendation for neoadjuvant chemo by the new doctor, where the first doctor told me to go home for Labor Day weekend and decide which way I wanted to do it. This made me extremely uncomfortable. I understand that within the realm of cancer treatment there have been many choices that have been mine and could not be made by the professionals, like whether to have reconstructive surgery or whether I wanted to do radiation in Longview or Portland. But for big medical questions I am pretty sure if the doctor was treating a relative they would likely have a recommendation for how to proceed.
Back to the van guy, Chris. Given my caveat of knowing nothing about his cancer or his case (this has never stopped me from having an opinion), I thought it was pretty huge that his doctor did not recommend to him what to do, or what he would do, or whatever. But here is the kicker. Chris told me he decided to just have the chemo and radiation because he would have no way to get to Portland, where the surgery would have to take place. And he added, he knows nothing of Portland and so given that it wasn't really an option for him to go there for surgery. I was stunned. And maybe this exposes my privilege or whatever, but Portland is two hours away, maybe two hours fifteen for Chris, and I wondered about his life, having not been there, ever? So... He has had two rounds of chemo/radiation and was told at his follow up that his cancer is not fully gone. There is no surgical option now because he wouldn't be able to heal due to all the radiation he has had. He can try another round of chemo and that might be it. Now, I have no idea really whether his cancer would have played out this way anyway or not. I am just in disbelief that this human being simply had no safety net, public or private, to help him out. Shouldn't a rural oncology clinic have a system in place to help a person in these situations? Shouldn't people have people in their lives to lend a hand in a crisis?
I have ridden the van to save the gas money and put fewer miles on my car. Others have no alternatives. It is just hard to swallow, that some people are that alone. As I said earlier, I have little information about this man, his medical situation or the presence or lack of loved ones in his life. I only have what he stated, matter-of-factly in a brief conversation with me. He shrugged a couple of times and said, guess we'll just see what happens, like he was talking about nothing more than a basketball or football game in which he did not have much of a stake.
Back to the van guy, Chris. Given my caveat of knowing nothing about his cancer or his case (this has never stopped me from having an opinion), I thought it was pretty huge that his doctor did not recommend to him what to do, or what he would do, or whatever. But here is the kicker. Chris told me he decided to just have the chemo and radiation because he would have no way to get to Portland, where the surgery would have to take place. And he added, he knows nothing of Portland and so given that it wasn't really an option for him to go there for surgery. I was stunned. And maybe this exposes my privilege or whatever, but Portland is two hours away, maybe two hours fifteen for Chris, and I wondered about his life, having not been there, ever? So... He has had two rounds of chemo/radiation and was told at his follow up that his cancer is not fully gone. There is no surgical option now because he wouldn't be able to heal due to all the radiation he has had. He can try another round of chemo and that might be it. Now, I have no idea really whether his cancer would have played out this way anyway or not. I am just in disbelief that this human being simply had no safety net, public or private, to help him out. Shouldn't a rural oncology clinic have a system in place to help a person in these situations? Shouldn't people have people in their lives to lend a hand in a crisis?
I have ridden the van to save the gas money and put fewer miles on my car. Others have no alternatives. It is just hard to swallow, that some people are that alone. As I said earlier, I have little information about this man, his medical situation or the presence or lack of loved ones in his life. I only have what he stated, matter-of-factly in a brief conversation with me. He shrugged a couple of times and said, guess we'll just see what happens, like he was talking about nothing more than a basketball or football game in which he did not have much of a stake.
Wednesday, April 3, 2013
You just never know what is going to happen...
Well, my counting has been wrong for a while. It seems Dr. Kim forgot to tell me, yes, forgot to tell me, that I am having 33, not the 28 radiation treatments he told me I was having. Apparently I am having the 28 and then five additional treatments to the lymph node area only. So. I will be riding to Longview through next Thursday, not tomorrow as I had thought all these weeks. A small bump in my bumpy road, but yet another panic inducing quake to my already shaky ground. It is amazing how changes (or not changes, just the plan I am apparently the last to know about) can throw a person off.
Anyway, another week of the van, and luckily Jon planned the SD trip a couple of weeks out from treatment so that is still post radiation. Embrace the suck!
Anyway, another week of the van, and luckily Jon planned the SD trip a couple of weeks out from treatment so that is still post radiation. Embrace the suck!
Saturday, March 30, 2013
Van people, redux
The van is a lot different than it was when I started. There are three of us riding now, though I have no idea whether there will be others next week. One does not know, day to day.
Smoking Barb sits in front of me. She had a lumpectomy and is a few weeks behind me on the radiation. I mean her nickname (my own, private nickname) in the most inoffensive way. I have no truck with her for her habit. Mike (throat cancer, back seat) was struggling with smoking. I know it is just plain hard to give up addictions. There is no judgement on my part. But the fact that Barb walks the parking lot smoking after her treatment and seconds before climbing back on the van is why I call her Smoking Barb. My only wish is that she was a little more conscious of how bad it sometimes smells in that moment of being shut in the van with her. Even a mint would go a long way! Anyway, because our treatments are so few and we have such a quick turnaround right now, I feel like Barb has less time to smoke, which is better for me, worse for her. I brought her up at dinner one night and both my teens were adamently opposed to me talking with SB about the issue. Granted, there is not much harder topic to bring up with another person, especially one you hardly know, than their smell. I had an employee once who I actually fired because she smoked outside then walked right back into the book shop. Not a good smell for a book shop. It sucked though, because no matter how little I was judging her for smoking, it all seems pretty judgemental when trying to address it. Back to my teens. They in all their teendom said I would offend her no matter what (quite possibly true), and in all their ultra-teendom thought I would really embarass myself by bringing up the topic. In the end, I don't have the energy to ask her to give up her guilty, smelly, unhealthy pleasure. We on the van are all dealing with a lot of shit, including her, and it is not my place to compromise her dignity.
Speaking of dealing with shit... Another Judy started riding last week. I took the bench behind her at first, but moved next to her when I realized she was talking to me non-stop and I could not hear a word of what she was saying. Judy is 72 and dying of lung cancer (diagnosed two Augusts ago) that is all over her brain now. She seems pretty damn matter-of-fact about it. Today is the yard sale she has been working on for a while. She told me she agreed to the radiation because it could give her some of summer and gardening. Otherwise she was never willing to have chemo; she says it is poison (of course it is! That is the point of it!) and is suspicious of "big pharma's" motives... Judy talks... a LOT, due to the massive amounts of steroids she is on. Given what my very low dose prednisone does, I am not at all surprised that she talks non-stop. I figure the least I can do is listen. I like Judy, though some of her topics would definitely preclude me from appreciating her much in another non-van life. One day she was off about teachers and the schools, you know, are teachers still underpaid, I mean, do they "think" they're underpaid? I did gently explain that in the realm of professionals with the level of education teachers have to have and constantly maintain and upgrade that yes, they are underpaid. I also gently explained that our schools DO use what money we get efficiently, that it quite simply is not enough. Yesterday it was children in restaurants, ruining her meal... you get the picture. However, being van people together makes it all a bit different. I am amazed by Judy, matter-of-factly deciding how and when to let her life go.
We are strange bedfellows on the van. I am not really looking for any profound connection among all of us. Obviously none of us wants to be there, and we are all gritting our teeth and counting the days (four more for me!). At the same time, I believe we are all very grateful for it. I know I could get to Longview without it day after day. I am relatively young and healthy, and if I got tired of all the driving I have a husband and friends that would have helped (I had several friends offer to do driving with me, and though I haven't mentioned that here, I am still so touched and grateful). Still, it is a fantastic and helpful service, and is saving me gas dollars as well as more fatigue and logistics. Observing the other van people for five weeks now my objective assessment is that many of them would not have been able to get to Longview for radiation day after day without it. Some folks have trouble just getting in and out of the van.
(An aside: someone on NPR was discussing social safety nets and addressed the idea of the private, as well as public, safety nets that some people have, though may never define them as such. I realized right away that I have an amazing private safety net. I know that if medical bills became too large, we would not lose our home, because of our families. I know that friends have not hesitated to step in and help us, with food, etc. throughout my cancer. In all this I had one potential insurance snafu and realized that because of our safety net I would not need to access, in fact I felt I would be remiss to access, the financial aid services of the hospital. Because of my excellent health insurance safety net though, the snafu was resolved. I just want to acknowledge my gratitude and my awareness that in many ways I am so, so lucky.)
Someone, I can't remember who, told me that Dr. Kim (the radiation oncologist) was working in Portland and went to Longview to set up a radiation oncology service clinic for people "between the cities" to get radiation. He seems like a unique guy. I believe he actually rode around the route with the van driver to set up and plan this amazing (no cost) service so that it would be easier to get radiation treatment.
As I have four more radiation treatments this is my last Van People. Unless of course, an irresistible character or two climb on next week. After Thursday my cancer treatment is sort of, officially, finished, aside from the Herceptin infusions (seven more) and years of Tamoxifen pills . I say this with a grain of salt, of course. I could have called this blog, You Just Never Know What is Going to Happen, since I'm sorry to say, that is the real takeaway. I think the van people would agree.
Smoking Barb sits in front of me. She had a lumpectomy and is a few weeks behind me on the radiation. I mean her nickname (my own, private nickname) in the most inoffensive way. I have no truck with her for her habit. Mike (throat cancer, back seat) was struggling with smoking. I know it is just plain hard to give up addictions. There is no judgement on my part. But the fact that Barb walks the parking lot smoking after her treatment and seconds before climbing back on the van is why I call her Smoking Barb. My only wish is that she was a little more conscious of how bad it sometimes smells in that moment of being shut in the van with her. Even a mint would go a long way! Anyway, because our treatments are so few and we have such a quick turnaround right now, I feel like Barb has less time to smoke, which is better for me, worse for her. I brought her up at dinner one night and both my teens were adamently opposed to me talking with SB about the issue. Granted, there is not much harder topic to bring up with another person, especially one you hardly know, than their smell. I had an employee once who I actually fired because she smoked outside then walked right back into the book shop. Not a good smell for a book shop. It sucked though, because no matter how little I was judging her for smoking, it all seems pretty judgemental when trying to address it. Back to my teens. They in all their teendom said I would offend her no matter what (quite possibly true), and in all their ultra-teendom thought I would really embarass myself by bringing up the topic. In the end, I don't have the energy to ask her to give up her guilty, smelly, unhealthy pleasure. We on the van are all dealing with a lot of shit, including her, and it is not my place to compromise her dignity.
Speaking of dealing with shit... Another Judy started riding last week. I took the bench behind her at first, but moved next to her when I realized she was talking to me non-stop and I could not hear a word of what she was saying. Judy is 72 and dying of lung cancer (diagnosed two Augusts ago) that is all over her brain now. She seems pretty damn matter-of-fact about it. Today is the yard sale she has been working on for a while. She told me she agreed to the radiation because it could give her some of summer and gardening. Otherwise she was never willing to have chemo; she says it is poison (of course it is! That is the point of it!) and is suspicious of "big pharma's" motives... Judy talks... a LOT, due to the massive amounts of steroids she is on. Given what my very low dose prednisone does, I am not at all surprised that she talks non-stop. I figure the least I can do is listen. I like Judy, though some of her topics would definitely preclude me from appreciating her much in another non-van life. One day she was off about teachers and the schools, you know, are teachers still underpaid, I mean, do they "think" they're underpaid? I did gently explain that in the realm of professionals with the level of education teachers have to have and constantly maintain and upgrade that yes, they are underpaid. I also gently explained that our schools DO use what money we get efficiently, that it quite simply is not enough. Yesterday it was children in restaurants, ruining her meal... you get the picture. However, being van people together makes it all a bit different. I am amazed by Judy, matter-of-factly deciding how and when to let her life go.
We are strange bedfellows on the van. I am not really looking for any profound connection among all of us. Obviously none of us wants to be there, and we are all gritting our teeth and counting the days (four more for me!). At the same time, I believe we are all very grateful for it. I know I could get to Longview without it day after day. I am relatively young and healthy, and if I got tired of all the driving I have a husband and friends that would have helped (I had several friends offer to do driving with me, and though I haven't mentioned that here, I am still so touched and grateful). Still, it is a fantastic and helpful service, and is saving me gas dollars as well as more fatigue and logistics. Observing the other van people for five weeks now my objective assessment is that many of them would not have been able to get to Longview for radiation day after day without it. Some folks have trouble just getting in and out of the van.
(An aside: someone on NPR was discussing social safety nets and addressed the idea of the private, as well as public, safety nets that some people have, though may never define them as such. I realized right away that I have an amazing private safety net. I know that if medical bills became too large, we would not lose our home, because of our families. I know that friends have not hesitated to step in and help us, with food, etc. throughout my cancer. In all this I had one potential insurance snafu and realized that because of our safety net I would not need to access, in fact I felt I would be remiss to access, the financial aid services of the hospital. Because of my excellent health insurance safety net though, the snafu was resolved. I just want to acknowledge my gratitude and my awareness that in many ways I am so, so lucky.)
Someone, I can't remember who, told me that Dr. Kim (the radiation oncologist) was working in Portland and went to Longview to set up a radiation oncology service clinic for people "between the cities" to get radiation. He seems like a unique guy. I believe he actually rode around the route with the van driver to set up and plan this amazing (no cost) service so that it would be easier to get radiation treatment.
As I have four more radiation treatments this is my last Van People. Unless of course, an irresistible character or two climb on next week. After Thursday my cancer treatment is sort of, officially, finished, aside from the Herceptin infusions (seven more) and years of Tamoxifen pills . I say this with a grain of salt, of course. I could have called this blog, You Just Never Know What is Going to Happen, since I'm sorry to say, that is the real takeaway. I think the van people would agree.
Friday, March 29, 2013
A tenuous state
I made a mistake yesterday. I followed someone's link from facebook to a cancer blog that turned out to be a bunch of beautiful photographs of someone's wife as she fought and then died from breast cancer. I cannot tell you what a bad idea looking at cancer blogs is if you are in my boat. Most of them anyway. Any tenuous non-worrying state I had been in since the nice prognosis report instantly vanished. I knew that that state was tenuous, as my reality is that having this cancer means I will always, always be worried, for as long as always turns out to be. Even with the good news and mostly positive outlook, no one knows what will actually happen. I guess that is everyone's true state, only cancer people experience it in our faces, in quite an ugly and terrifying way. So... lest you thought I was done worrying, I'm here to report that that will never happen, and that clicking on the wrong link is enough to cause a complete panic attack. Sad but true. I feel sorry for my oncologist, who bears the brunt of it in the form of a new set of neurotic and irrational questions every time I see him. He is a patient man.
On another note, I started swimming this week. That was not so pretty either. It felt really good, the way swimming always does, but seems to be a whole new endeavor. My form stinks and my arms are pretty different than they were. I think that the muscles of my chest are attached to me differently than they were before and so feel odd. The good news is, the second swim went better than the first, so maybe progress will be quick. I did experience some additional swelling for a couple of days after both times, so am waiting a few days between swims for now. At times I cannot believe that the person I am chose to get the implants, as the healing really is so much slower than it would have been. I have always been a pretty no frills person, so am a little surprised at times that I did the reconstruction. On the other hand, if I try to imagine having nothing there (my understanding of mastectomy is that you do not come out what we think of as a"flat chested" woman but actually more like concave), I know I would be totally self conscious and hunched over. I also know that the idea of prostheses in a bra sounds nightmarish to me (bra being the operative nightmarish word there). For the long term I believe I made the right choice, though at times it does seem like more vanity than I generally exhibit. It's funny, I really never thought I was vain. I never wear makeup, I barely put on earrings, I wear Levi's jeans most days; but I knew when I went bald that I am a little more vain than I thought. I knew when I was morbidly self conscious about my lack of eyebrows, that having a concave chest might be more difficult than I could imagine. I had five long months to consider my options because of the neoadjuvant chemotherapy, and what I came up with was that the reconstruction would, simply put, make my daily life easier, more convenient, and though it seems counterintuitive, give me less, not more to think and worry about. The price is the long healing. So, I will go to the pool and pay it.
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