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I have been in quite the funk since we returned from NYC. I’m convinced that the only thing saving me from crashing and burning is going to work out three times a week.
It’s a myriad of things. Work is stressing me out. Chemo brain is making me feel stupid and forgetful. I’m dealing with physical symptoms, too. Pain and swelling in the radiated breast is uncomfortable. On my oncologist’s suggestion, I started taking ibuprofen every four hours to alleviate some of the discomfort. It was working, when I remembered to take it.
And then I started my period for the first time since July. It’s been two weeks now and shows no signs of stopping, especially thanks to the aforementioned ibuprofen, which always makes it worse. Either way, I’m miserable.
Add to that my never ending emotional turmoil over just what the fuck is happening inside my body at this very moment and why in the hell isn’t it May already so I can have this damn follow up exam and either relax or prepare for the next step?
During our weekly lunch the other day, B suggested that the vibes I’ve gotten when the kids and I have been sick extend from the guilt I feel over not having spoken up about Mike’s symptoms.
The moment she said it, I started to cry. I don’t think she’s right about the vibes. I do get them and they’ve been on target every single time, including the last time where I decided it was time to get that lump checked out–the eight year-old lump that had absolutely nothing to do with my cancer, but got me in for the mammogram that found the real problem.
But she is definitely right about the guilt.
In some ways, I think it paved the way for every bad decision I made afterward. It was easier to view myself as the person always fucking something up than the person who didn’t have the courage or wits about her to speak up.
This has to stop. My head knows better. No one knows how to deal with that type of experience until they’ve had to live through it once. It’s not my fault Mike is dead. It is NOT. I trusted the doctors to do their jobs. I trusted him to tell the doctor what was going on.
If we’d been married a little longer, maybe I would have known he wasn’t the type to share that kind of information. Maybe I would have advocated for him better. Maybe maybe maybe.
All I know is that I can’t continue to blame myself for not knowing what was beyond my control. I just have to figure out how to make those words in my head feel true in my heart.
At my last follow-up appointment, my oncologist mentioned again that I should get out and walk, anything to keep moving. I told her that I’d made a decision to make the effort at weight loss that I’d been putting off, that this cancer was a game changer for me. She told me about a study taking place to determine the affects of moderate aerobic exercise on insulin resistance in breast cancer patients who have received chemotherapy within the past year. Additionally, they’re interested in seeing whether it improves energy levels and overall well-being.
If I understand it correctly, the estrogen and progesterone hormones that feed my type of cancer are fine as long as they’re attached to proteins. It’s when they’re running free that they start causing trouble, much like unsupervised children. Resistance to insulin increases the amount of unruly hormones. Soooo… I don’t know… exercise acts as birth control, preventing those unwanted hormones?
Anyway.
The study involves going to the gym three times per week and working out under the direction of a physical therapist. I have my blood pressure and oxygen saturation levels monitored while I do some time on the treadmill, recumbent bike and stair stepper. In the time I’ve been participating in the study, I’ve gone from 27 minutes of exercise to more than 50. And I work out with two other women who are breast cancer survivors.
We chat while we’re working out, sure. But when three of you are doing different things and arriving at different times, it’s not easy to get into a meaningful conversation. We’re more focused on what we’re doing and how we’re feeling while we’re doing it.
Last night was different. We went to dinner after our workout, with the excuse of hearing about the trip to NYC I just took last weekend. And while we did talk about it, the conversation soon shifted to our experiences with breast cancer. It’s reassuring to have similar symptoms, and simultaneously remembering that every person is different. We didn’t all get the same medications. Our reactions to the meds in common weren’t all the same. That “fucking Neulasta shot” hit me in my neck and shoulders every time, but struck the lower back of K and started in D’s legs first. The Taxotere caused shooting pains down my legs that were almost electrical. D knew exactly what I meant, but K had none of that.
We talked about hearing the news, our biopsies (it sounds like they both had bad experiences, whereas mine was surprisingly good) and how we dealt with losing our hair. We talked about the bad days right after treatments and how looking back, it’s all so fuzzy. I about bounced in my chair when D started describing how well she used to multi-task but now gets overwhelmed with what to do first. That has been my biggest frustration post-treatment and it was so good to talk to someone who GETS it.
Before we knew it, we’d killed two hours and it was time to go home. When I got there, I could barely keep my eyes open. It may have been post-NYC trip related. But it mostly felt like a great unburdening.
Hi. My name is Val. Let me share with you some of the things I’ve accomplished in my life.
I became a single mom of twins when I was 19. I married a wonderful guy, only to lose him to cancer when I was just shy of 29. I started college when I was 32, earning a bachelor’s degree in communication and graduating cum laude. I bought a house in 2003, just before my boys graduated from high school.
In 2009, I started graduate school, after debating it for a couple of years. When I found out my grandmother earned her GED at the age of 48, I enrolled in a library and information science program. Last April, I received a diagnosis of Stage IIa breast cancer, with lymph node involvement. I spent the summer and fall going through a lumpectomy, chemotherapy and radiation. After taking one semester off, I am back in school part time and working full time at the library where I’ve been employed for the last seven plus years.
In short, I’m pretty fucking amazing. And it’s time I acknowledged that.
So, I’ve been having lunch once a week with a colleague who is taking a class on developing listening skills (it’s for a medical profession). The gist of the class is to spend time having conversations with one person throughout the semester. We picked a topic at the beginning of the semester to discuss. Since my colleague already has her MLIS and attended the same university that I do, I naturally picked “Career.”
She’s helped me re-frame a few experiences I’ve had, which will enable me to use them in future interviews. I’ve also realized, through our discussions, that I’m not now, nor was I ever, as inept as I might have felt in previous positions. Now, maybe some of that is being 45 and figuring out that life is a lot like junior high. Everyone else looks like they have their act together, when in reality, they’re just as emotionally messed up as the rest of the world.
(Then again, sometimes I feel like I’m just not very observant. I’m not stupid… it just takes me longer to see what’s right in front of me.)
At any rate, the discussions have been good. I haven’t really found a solution to my biggest problem. Hell, I can’t really concisely describe what that problem is. I feel… anxious? Overwhelmed? Rushed? Impatient? I’m not sure if any of these fit perfectly or if they all do.
The bottom line is that there are so many things I want to do and a limited amount of time in which to do them. My colleague suggested that perhaps my health issues might have made that more pressing and as she was asking the question, I was realizing that was a large part of it. Up until last summer, I’d been able to do a fairly successful job of not considering my own mortality. I don’t mean that in the sense of the reckless teenager who never believes anything bad will happen–trust me, I’m well aware that bad things happen. No, this is just… well, based on the longevity of my family members, I was always able to convince myself that I would live to be well into my 80s or 90s and would have plenty of time to get to certain things after I retire.
The problem is that all of those relatives who lived that long didn’t get a cancer diagnosis when they were in their mid 40s. They had their issues, sure, but they had them later on. And let’s face it, the way the economy did a number on my pension and deferred compensation? Retirement is a loooooooooooong way off for me. Unless I win the lottery.
So, here we are. I have lots of things that I want to do and lack the time to do them. Some of it is completely shadowed by the looming entity that is “grad school.” I really wrestled with the decision to go back and finish. But when I reworked my plan of study to account for the semester I took off, I realized that I’m more than halfway. In fact, I’m almost done. Had I not taken last semester off, I would be graduating this December. It would be stupid to quit at this point.
School itself creates all kinds of issues for me. Every technology class I take makes me want to learn more. Every link provided to places I can go for online tutorials make me wish I had hours to lose myself in something that truly interests me. There was a time when I could create a site from scratch, maybe not well, but I could do it. Now, just sitting down to find a new blog template is too much for me to deal with. I listened to a lecture the other day that recommended two books on topic that interests me, and I promptly requested them from the library, even while I was asking myself “And just when are you going to find time to read these?”
Genealogy is really tugging at my mental heartstrings because the 1940 census is coming out this year. I want to be involved in the indexing project, so I signed up at Family Search to start indexing other records–something that I’d done before but pushed aside for other things. Last night, when I should have been reading for one of my classes, I instead started trying to find my great-great-great grandmother’s family. I can’t allow that kind of thing to happen.
My house needs some serious help. I want to redo my office. My bathroom is next on the list of major renovation, but money is an issue right now because The Boyfriend is probably out of a job soon. It’s almost time to start seeds for the garden this spring–the garden we still have to plot out because we agreed that we’re reducing the number of vegetable plants. At least landscaping the front yard is off the table for another year, thanks to the ongoing sewer separation project taking place in my neighborhood. But still, there are things that need to be thought about and acted upon.
*sigh* And these are just a few of the things that are on my mind every day. Don’t get me started on Pinterest. I’m signed up, but right now I’m trying to avoid it.
I’m like an enthusiastic puppy with too many toys. I want to play with them all, even though it’s absolutely not possible.
I have to prioritize. I have to decide what is most important to me right now and what can wait. I have to get over the fear that I won’t be here around in a few years and I need to do a better job of managing the time that I do have so that I can work in some of the little things that I enjoy. I have to resign myself to the fact that I will never, ever learn how to knit or crochet and that’s perfectly OK.
But it still kind of sucks.
When I was a kid, my dad bought me a telescope for Christmas. I remember looking up telescopes and finding out that there were reflection telescopes and refraction telescopes.
This time of year, a lot of people spend time reflecting on the previous months. I’ve certainly done my share of that. This is also the time of year that we resolve to do things differently, only to fall short of our own expectations shortly after the new year begins.
The basic definition of “refraction” is “the bending of light as it passes from one medium to another.” Allow me to take a bit of “creative” license with this definition, if you will. Essentially, it’s a change in direction.
My life this year has been all about refraction, according to my own definition. As the year comes to a close, I find myself in the position of needing to veer off course again. The changes that many people resolve to make have become a matter of life or death for me. I don’t need to lose weight just to feel better about myself mentally and physically. I need to lose weight to help prevent my cancer from coming back.
I must change course to save myself.
Strangely enough, I’m not afraid of this prospect, maybe because I’m not planning on setting any goals. I’m just going to try to make better choices, and find ways to add more physical activity into my daily routine.
On January 9th, I start school again. I’m both excited and dreading it. I’m excited because I do enjoy the idea of always learning. I’m dreading it because time management has never been my strong suit. The thing is, I do things really well when I put my mind to it. But I am so easily sidetracked.
Hmm…. easily sidetracked, eh? As in, veering off course? I guess I’ve always dealt with a lot of refraction.
So, do I need more or less refraction in my life? Apparently, this is something that will require some reflection on my part.
One thing I do know for certain: I wish I still had that telescope.
Happy New Year.
I found out I had breast cancer on April 27th. On May 20th, I had a lumpectomy and sentinel node biopsy in which two lymph nodes were removed. Just before Memorial Day weekend, I learned that both nodes tested positive, which meant that I would be getting both chemo and localized radiation. When I started to freak out over the what ifs and the unfairness of it all, I told myself to stop it. There is no fairness where cancer is concerned. Shit happens. Deal with it.
I had four rounds of chemo, which started on July 14th. I had my cousin shave my head as soon as I started losing my hair. I couldn’t control what the chemo did to my hair, but I could at least take control over how fast it would disappear.
My hemoglobin dropped after the second round of chemo, and I started to notice it around round three. Walking from the parking lot to my office was exhausting. Carrying a basket of laundry up from the basement? Forget it. Stairs were not an option, not even when descending.
My last round was in September, nine days before our annual Komen race. Somehow, I summoned the energy to walk the entire 5k. It was a personal “fuck you” to cancer. I was damn proud of myself.
Radiation started in October. I handled it well. I was a little iffy when the burns got bad enough to require an antibiotic cream. But it worked out. I didn’t get the fatigue that can sometimes be associated with radiation.
I was scheduled for 35 treatments total, every day Monday through Friday. The first few times, I was afraid to move until the therapist came back into the room. It doesn’t take long to learn the routine, though. The first 27 treatments were done at four different angles. The last eight were boosters, focusing on the areas of incision from my surgery. The simulator went off twice on each of those angles.
My last treatment was today. When the simulator shut down for the last time, I started to cry. And when I got to my car, I started to sob with relief I hadn’t known I needed.
Eight months of hell has come to an end.
Friday was the last Friday I will spend getting radiation, hopefully forever. I am down to four treatments now. Again, hopefully forever.
Slowly but surely, I am getting my life back.
I went to the grocery store afterward, because the forecast called for cold weather this weekend and I decided to spend it baking. I’m also in the midst of planning Christmas dinner, a meal that I will be preparing in my hotel room (with fully equipped kitchen) in Philly. JM and I are heading east to visit JL for the holiday. I have the menu set and some of the “fixins” purchased.
We’re going to be packing quite a bit of stuff for this trip. I hope the bellhop doesn’t hate me too much.
I’ve been feeling rather pessimistic lately, which isn’t exactly an unfamiliar feeling, but it’s one I’d thought I’d shaken long ago. I think it’s just a little bit of trepidation over knowing that I’ll soon be done with treatment, no longer actively “fighting” the disease. I start hormone suppressants in January, though, and that’s what will stop this cancer’s “food source.”
This morning, I woke up and knocked a bunch of things off of my To Do list in short order. I baked three loaves of pumpkin bread and a batch of cheesecake brownies. My kitchen doesn’t look completely trashed. I have clean clothes to wear tomorrow and food to pack in my lunch. In short, I’ve been productive, more productive than I’ve felt in eight months.
My hair is growing back. My radiation burns are healing already. The Boyfriend and I are laying the groundwork for healthier lifestyles as soon as treatment is completed. I’m registered for winter semester. I feel great.
And I’m going to Philly for the very first time, spending Christmas with the two most important people in my life.
It is so good to be me again.
My last chemo was delayed a day because of equipment malfunction. I was rescheduled for the following day, which meant that I wasn’t able to hang out with the “buddies” I’d made during treatment. (I did get to see a couple of them as they came in for their Neulasta shots, so all was not lost.)
There was a gentleman already in one of the chairs when I sat down and he had a laptop out. Before long, we’d started up a conversation as people in the chairs are prone to do, since you’re there for a few hours. S was fighting colon cancer for the second time.
S is roughly my age and dealing with the same type of cancer that my husband had. He talked about the drugs that he’d been on the first time around and I remembered those names from when Mike was going through chemo. Those drugs were relatively mild as far as side effects. S went through treatment and was deemed cured, for 20 years.
Then last year, the cancer came back. He had to have surgery and have his colon removed. The chemo treatment he was undergoing had some brutal side effects. But he had an amazingly positive attitude about things. As do most of the people you meet in the chair. Because we’re all brave for each other and it’s easier to be brave when you’re surrounded by people who know what you’re facing. Or maybe it’s more important to be brave then. We don’t use the phrase “what if?” We don’t discuss the possibility of our disease not being cured. We certainly don’t talk about having to come back again.
Today, S posted on his blog that a recent CT scan shows tumors in his lung and liver.
We do the things we’re supposed to do. We go through the treatments. The discomfort of radiation. The side effects of chemo. The sleepless nights worrying. We lament over the unfairness of it all, only to be confronted with the harsh reality that this fucking disease knows not the meaning of “fair.” Maybe we feel a sense of relief about that. We give ourselves pep talks and convince ourselves that it’ll be OK.
But we don’t really know that for sure.
All we can do is keep fighting.
Every Monday at radiation, I get my vitals checked and the radiation oncologist examines me to make sure I’m not glowing bursting into flames turning into a zombie developing an infection in the treatment area.
Since I’ve never been one to sunbathe, I haven’t had much experience with burns. Oh sure, I’ve gotten the occasional pink skin from swimming without sunscreen, but nothing major. Never any blistering.
I turned pink after two days of radiation. I have skin issues this time of year anyway, what with allergies and forced air dry heat. So, I was expecting the worst, but not knowing exactly what that worst might be.
I was put on Silvadene last week because one of the oncologists thought it was necessary. Silvadene is an antibiotic for second and third degree burns. That kind of freaked me out. Reading the directions on how to apply it didn’t make me feel much better. Sterile gloves and a sterile applicator? It’s scary to think that I might be that susceptible to infection.
I have been diligently applying it twice a day–except for yesterday–but I still wasn’t sure how bad it was. Things looked less red after four days off, but reading about the various burns and problems associated with them… it’s… squicky.
So, today I met with the doc. It was my favorite guy, not the one who put me on the Silvadene. I told him of my concern and he reassured me that everything looks pretty good considering how far along I am in my treatment. The Silvadene is doing its job. I feel better about the whole situation. I only have 13 treatments left now. I think I’ll survive it.
My hair is coming back in fairly quickly considering I was pretty much bald not that long ago. I can’t really tell what color it’s going to be yet. In some light it looks like my former natural color. Other times it looks dark grey. But I see a few that look reminiscent of my old “defectives,” and they are definitely different from the rest of what’s growing. So, I’m holding out hope for my brunette locks to come back.
It’s as soft as a rabbit’s fur. I can’t stop touching it.
Tonight, I noticed that there is officially enough for me to grab hold of with my fingers. And it’s also starting to cover the tops of my ears.
It won’t be long until I can take my hair ties and head bands back from The Boyfriend, who has been quietly flaunting his long curly locks in front of me all summer long. Meanie.
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