Two Years After The Completion of Chemo
Two years ago, I ended thirteen months of treatment for invasive, aggressive cancer. The American Cancer Society says you are a survivor from the time you hear the words, “You have cancer.” I get their point; if you’re living another day, you’re surviving. In my experience, the feeling of “surviving” didn’t hit me until much later. The first year going through treatments was hard enough. Now that it’s over, this next phase, sometimes, is just as hard. The treatments were certainly an emotional roller coaster, but the hardest part was dealing with the physical aspects; side effects of surgery, chemo and radiation. In the aftermath, the survivor phase, there are certainly lingering physical changes, but the emotional and mental aspects has became the hardest part, and still is sometimes a challenge.
The two year anniversary of completing treatments is a big milestone. Although there are tremendous advances and success in treatments of breast cancer, the risk of re-occurrence is there. Statistics can determine the percentage of cancer coming back. But stats don’t matter. You either get it or don’t. It’s random, just like getting cancer in the first place. There is comfort in knowing if you make the two year mark, your chances of re-occurrence are less. Chances become less at the next milestone of five years, and then ten. Never any guarantee, though.
A friend recently asked me, “How do you really know, or believe, that you are doing well?” I couldn’t answer that. It’s a tough question. There is no date on the calendar that gets circled as the DAY you will no longer worry. The day you know you are well and all is good.
My two year cancer-versary came without fanfare. It was an important and emotional day for me, but only me. I focused on what it meant to survive cancer. Certainly there are worse hardships in the world. But cancer was the hardest thing I ever did. I have been taking baby steps to move forward. In thinking about all of this, I realized it is time to leap forward, stop thinking about what I’ve done and focus more on what I’m doing.
I believe the medical profession does not pay enough attention to the “What next” of cancer. I felt let down by my oncologist. I was personally invested in our relationship as she was the one seeing me at my absolute worst. At the first follow up appointment, January 2014, she made it clear she was not doing anything for me but ordering labs and mammograms. Any other problem went to my primary doctor. I happened to have developed a bladder infection a few days before this scheduled appointment. She agreed with me I likely had a urinary tract infection (UTI). She admitted I looked terrible. There are urine sample cups in the bathroom, so I assumed the office knew how to confirm UTIs and therefore, presumably, treat UTIs. She also knew how frustrated I was with having so many doctor appointments. She refused to treat the UTI because it happened after my chemo. I also had disability papers needing her input and signature. Although these had been sitting on her desk since October, back when I was still getting treatment, she refused to sign them. I was to go to my primary and have him (retroactively, apparently) sign it. She rushed out of the room before I could get any of my “what’s next” questions asked. It became clear. I was done with treatments, there’s the door. I wondered if by not bringing in the big bucks anymore, I became a second class patient. The cordial nature of our relationship was over. Most of my appointments with her were good, but I expected compassion and answers. This wasn’t the first time I felt rudely treated. But it would be the last, from her and that office.
Between that appointment and my last chemo, I had it in my head I was done with cancer. I wasn’t thinking anymore about cancer. I was going to be back to normal. 100%. I wanted my old, happy, self back. When that didn’t happen, and this appointment set me back, I got angry. I got stressed out. I could feel the anxiety monster coming back. I was frustrated and handling everything poorly, not at all like I did before any of this shit called cancer started. Before, I had considered myself a calm and patient person. Now I was in another tailspin because of some shitty event. It was affecting my work. It was affecting my life.
I started immediately looking for another oncologist. Without going in to the minutia this all entailed, it took quite a few calls and days to get this accomplished. The doctor I went to was thorough. She picked up on follow-ups that were critical and missed by the other oncologist. There were more tests and a referral to a gynecologist to follow up on a past abnormal pelvic exam result. I was overwhelmed, again. Here I thought I was done with all these appointments and I was starting back up again. I was supposed to be done!! I was supposed to be going from every three weeks to every three months!
In less than a month I had four more doctor appointments, blood work, pelvic ultrasound, and echo-cardiogram and more pills! There were other tests ordered but I convinced the doctor they could wait. It was all too much.
One of those appointments was with my primary doctor get the paper work filled out. He has known me for 15 or so years. He told me I was clinically depressed. I admitted I was “probably a little depressed.” I wasn’t feeling sad so I didn’t think it was a big thing. He was persistent though. In all the things I was saying; I can’t sleep, I get frustrated too easily, I felt in a tail spin, I have a hard time focusing on driving, can’t remember my patients week to week without extensive notes to remind me, I get tired easily, taking a lot more Xanax, and I was only eating because I knew I had too, were all signs of depression. My other doctors all along had been asking me if I was depressed. My answer was always the same, “probably.” Did I want to do anything about it? “No.“
He called me at home the next day to check in. I was already on a half dose of Effexor for the intense hot flashes I was getting from the tamoxifen. When you are on tamoxifen, there’s only two kinds of antidepressants you can be on without reducing the efficacy of tamoxifen. The dosage for treating hot flashes is half the dose of the treating depression (37.5 mg). My doctor reasoned with me since I was already taking Effexor, why not take it at the next higher dose for depression too. No extra pills. I finally relented. I realized he was right. I did need some help. Me, who has the family nick name Happy, was depressed. I felt defeated to admit that. I wasn’t maintaining my strength. Being seen as strong, for some reason, is important to me. This was a failure. But I couldn’t go on freaking out every time something didn’t go my way or some one decides to be a shit to me.
So, this is how I started my “survivor phase.” I wanted to be me again. Instead I was me with depression and ongoing anxiety. Ugh! I didn’t know how to cope with this. The support group I attend was having a share meeting coming up. At that meeting I talked about my surprise at being depressed. One gal had a wonderful analogy I just love. She said going through treatment was like being in an underground bunker. When you’re done, you come up for air and look at the skyline. The skyline is an apocalyptic scene and you say to yourself, “Holy shit. What just happened?”
As in all medical events that effect my family or me, I delve into learning as much as I can. I learned depression after cancer is common. I ask, why had no one told me? I believe had I known, I might have been better prepared. The Effexor did help. A co-worker remarked I seemed to be happier. I was surprised by the comment, but it was good to hear I was starting on the mend.
The side effects of Effexor, for me, were weird. I was taking it at night. It was reducing my urge to drink wine, a good thing. BUT if I did drink, I had no stop button! I was putting away bottles of wine and not feeling the effects of overindulgence the next day. The doctors didn’t think it was a side effect of the Effexor. Maybe drinking was just a temporary coping mechanism, but I did find forums of others claiming the same thing. I switched the Effexor to the morning and no longer have that lack of control to overdo. I do plan to get off Effexor after the holidays. I just hope I won’t need it for hot flashes.
Along with my mood being affected, my cognition was subpar. This too I felt was dismissed. Certain chemos can cause your brain to feel like it’s in a fog. It becomes hard to concentrate or follow simple conversations. It’s called chemo brain. Just ask my family, it’s real. I used to say, “Just don’t ask me to do math or I’ll tell you 2 and 2 is five.” I found driving to be hard. I didn’t feel comfortable driving more than 15 minutes away. The town I live in is small and I’ve lived here 20 years. Yet, I would find myself on unfamiliar routes instead of the ones I usually took to get to a certain place. I’d have to stop and think, “How did I get here?…Why did I take this way?”
I developed insomnia while getting chemo and radiation. Now it was worse. I needed Xanax almost nightly. Xanax was getting me to sleep but not giving me good rest. I felt like I was running marathons in my dreams; they were so active. Some nights I would be up till 3 or 4 a.m. just because. There was no rhyme or reason for these episodes. This too was affecting my days. My afternoon coffees that usually gave me a little pep for the rest of the day was now keeping me up for hours. I did manage to give that up easily but I was conking out before dinner. If I worked three days in a row, my husband Lynn noticed I had no energy that night or the next day. My co-worker noticed I got easily stressed out on my third day. I noticed going back to yoga class after three days of working put me back to square one. Square one was getting nauseated during class and feeling I had to push myself to finish class. I did discover using Xanax long-term for sleep can interfere with deep sleep, which is probably why I rarely felt rested, no matter how long I “slept.” I switched to Ambien, made other adjustments and can say now my attacks of insomnia are much less!
The lasting physical effects of my cancer have been minimal. There’s scarring and some deformity to my left breast. There’s a small skin tag sticking out where my port was. Oddly, that bothers me more than the deformity on my breast. I’m obsessively trying to push that tag inside. The scarring made it hard for a while to stretch my left arm without tightness or occasional soreness. With yoga, it’s all better.
My face developed mild infection around my nose and mouth, looking like bad acne. Another specialist, a dermatologist, informed me the changing hormones from tamoxifen was the culprit. More medicines! Antibiotics to treat, a sulfa soap for flare ups and a cream for maintenance.
I have the tamoxifen to thank for the hot flashes! How does one sweat more sleeping than working out? My knees would sweat just sitting and watching TV. I would have seven or more drenches a day. I tried acupuncture with limited success. I started seeing an Integrative Medicine doctor who recommended a hefty dose of fish oil. After a while it just felt like I was taking more pills so I stopped. The best solution was the half dose of Effexor.
Anxiety is still there, but mildly. Sometimes I get these weird feelings in my chest: like I am about to go down fast on a steep roller coaster. My heart feels like it is lunging forward. Sometimes I notice my pulse racing for no apparent reason. I want to live without fear of re-occurrence. Not including doctor appointments, every three months is some kind of test: either an echogram (every six months), lab draws (every three to six months), mammogram with a follow-up ultrasound alternating with MRI of the breasts (every six months), pelvic ultrasound and exam (yearly). As calm as I try to be for these tests, I can’t help feeling a little anxious whenever I walk through the clinic doors. I’ve heard it called “scan-xiety.” This last year I had additional biopsies. The MRI in April showed a suspicious spot. My pelvic ultrasound in July showed an abnormally thick endometrial stripe, both which required follow-up biopsies. Fortunately everything turned out OK. I started to realize with new technology, there will likely be more and more spots found requiring a look-see. It’s a part of the package of living with a chronic disease. What point do you stop and just say, enough tests? These upcoming tests are hard on Lynn, too. We go along feeling like life is better, life is good and then in 90 days we are reminded again of the hell I may have to repeat.
My eyelashes are still thin. Not growing back like I had hoped. My eyebrows too are very thin. Not a big deal, but it would be nice to have some brows and lashes. I’m trying a home remedy of coconut and castor oil.
The only other ongoing problem is my bladder. I don’t need to get into too much here but it got more trashed after chemo. Fortunately there is a miracle medication, Toviaz. It has helped about 97%. I plan to work on the other 3% this year.
I know these all seem minor. They are. But these were all not a part of me before.
In my quest to be back to my old self. I was going to throw away everything in my house that said cancer. My appointment reminders, thinking of you cards, scarves, anything with a pink ribbon. I wasn’t going to wear the banner. As I was getting ready to toss my hats and scarves, I started looking at some of the scarves. An a-ha moment I realized, “You know, these are pretty” and I kept them. I realized then that I can’t change what happened. The changes within me are now a part of me. I have come to accept my changes, good and bad. I embrace them. It’s who I am now. I was not kind to myself and expected too much too fast. I can accept that I do not have the patience like I use to. I can accept that I still get frustrated easier than I use too. I will falter in trying to embrace these changes. And I can accept that too.
There are good changes. I am feeling healthier. I feel more compassion. I feel more relaxed talking to patients or family and friends, instead of thinking about the next 100 things I have to do. I work hard, ironically, at having relaxing days off. I have more of those. I have simplified my life and do the things I want to. Even something as simple as having time to hang clothes on a clothes line was important. I started a garden. I compost more. I learned to make all of my own personal and household products. (Except Dawn. Anyone know a good recipe for Dawn?) I make an effort to see at least one friend a week. I found the time to slow down and really enjoy my life.
I hear and notice birds better than before. I love watching them out my kitchen window. I put a feeder and bird bath out there to welcome them.
My taste buds are great! It’s almost like I got brand new ones. I can taste food and savor the bites I take.
I don’t pay attention to news anymore. During treatments, watching the news was like that Pink Floyd line “Lips are moving but I can’t hear what you’re saying.” I tried paying attention. I thought I needed to know current events. Honestly, I don’t. Whenever I do pay attention, it’s horrible news about people hurting people. I can’t do anything about those events. I’d rather focus on what’s around me that I can affect.
I have a habit of perseverating on past events, especially those I either did something stupid or felt I was wronged. “I should have said…” almost became a past time game. Now I try to tell myself, “I can’t go back. I accept it and move on.” I will falter in this too.
I realized I was acquiescing to just about everything. This isn’t new. Learning to speak up is. Saying, “It’s fine” has been replaced with “Because you asked…” I’m not as afraid to say no to something I don’t want to do. I like that change.
And yes, I now accessorize with scarves.
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