A Glimpse Inside My Head

This month marks three years cancer-free. Each appointment I make it through, the more hopeful I am that I have this beat. This past year brought significant personal challenges, but the good news is I got through it and am on my way to finding myself again. The cancer no longer defines me, nor does my divorce. I am strong and independent and grateful. This journey has taught me that the things that matter are not things at all. Not a big house, or the next promotion, or a generous bank account, or a perfect body. But instead what is important to me is being true to myself, maintaining strong connections with my daughters and meaningful relationships with others in my life, enjoying new experiences and an active lifestyle, kindness, work which challenges me and makes a difference, and doing all I can to be fully present in the moment. Life can change in the blink of an eye. I will cherish all the moments I can get.      

I’m not there yet but am getting closer. I am resolved to introduce more things into my daily life which bring me joy, happiness, and contentment. If I focus on me, my hope is that the rest will fall in place.   

It’s now been over a week since my last treatment, though I’m realizing that it’s going to take me a while to fully transition back to normal. Life continues busily around me, and it feels good to be in the midst of it again. On the other hand, I feel different, changed somehow. As someone who considered herself sharp with great attention to detail, my chemo brain is still making it difficult to focus and recall. My productivity and organization at work is probably running at 75% of my previous self, but I keep reminding myself to be grateful that I am back doing important work. Out with friends last night I heard myself say something about having cancer but quickly corrected myself, “well, not anymore!” I wonder how long it’ll be before I really believe that and no longer think of myself as somehow defined by the cancer. My skin is slowly healing from the effects of radiation, my energy level improves every day, and my hair is filling in. It took some courage that first day at work without a hat, but it’s feels so much better to embrace how I am. One of my co-workers described my new look as fierce. I like it. I did just tackle a pretty big obstacle and come out ahead, so I should be proud of my strength and determination. I know that there is a chance that my cancer could recur, but right now I’m going to assume I’m cancer-free until proven otherwise. And if it does, not only am I now better able to handle it but my perspective has changed such that I can better appreciate life in the present. Hopefully I’ll have another 44 years to enjoy it, but if not I know that it’ll be okay. Enrolled in a 12-week anticancer lifestyle class with eleven other survivors, I am hoping to learn strategies that will make it more difficult for cancer cells to take hold of me again. Mindset, diet, exercise, environment, and social connections are the main focus. It’s good stuff. I look forward to next weekend’s celebration and hope to let everyone know how much their support and encouragement has meant to me these past eight months.       

Today marks the middle of my radiation course. So far it has been a mostly positive experience. Since treatment takes many weeks and I have appointments at the same time every day, I have gotten to know many amazing women during my time in the waiting room. Sharing our cancer stories, talking about our kids, lamenting our home projects, showing off our peach fuzz, and on two occasions even baring our chests (that wasn’t me). The techs are super friendly, and I enjoy seeing them at the end of my day. For the past week or so, the skin on my right chest wall has started to show the effects of radiation by taking on a sunburn appearance. I am religiously applying the creams that were recommended and so far there’s no pain or blistering. My fatigue level is definitely more than it has been, likely a result of radiation but probably also to my busier schedule now that I’m back to work. Despite how tired I usually feel, I have set a goal to make it to the gym after work 2-3 days a week and have somehow managed that over the past six weeks. It’s exciting to see my hair growing back. I’ve got a half inch of hair on my head (finally some of it coming in brown, not white) and a good start on my eyelashes and eyebrows. My neuropathy is improving every day, though my hot flashes seem just as frequent. I met with the medical oncologist yesterday to discuss my plan for hormone therapy. I will be starting tamoxifen in April then taking it daily for the next five to ten years. I have noticed some changes for the better in the post-cancer me. I am more patient, understanding, optimistic, and grateful. It’s easier to let worries go, rather than dwell on them. I am determined to not let the small stuff bother me, to be an active participant in life, and to not take what I have for granted. I am lucky in so many ways!          

Today I received my first dose of radiation. It was uneventful, and I left not feeling any different physically than when I went in. It did strike me as a lonely experience though. I was asked to lay on a hard table, chest exposed, arms over my head. The technicians leave the room during the treatment, then the X-ray machine whirs and moves over me. As I laid there in such a vulnerable position and unfamiliar place, my mind couldn't help but think about the reason I was there... my body is not cancer-free yet. I have grown tired of it all; it is not easy being a patient or living with the uncertainty. After my final mapping was done yesterday a physician came in to inspect my radiation zone, and without acknowledging my presence or the fact that I was an actual person, he just looked over my chest and its markings before saying "looks fine" then walking out. Other than that somewhat depressing five minutes, everyone in the department has been extremely friendly and helpful. Every weekday for the next 5+ weeks, my plan is to work six hours then walk downstairs for my 3:00 radiation treatment. To prevent skin breakdown I am using Calendula cream twice a day, then when my skin becomes reddened I will switch to CeraVe lotion and when/if it blisters to prescription cream. They have warned me to expect fatigue to develop as time goes on and as my body works hard to repair itself from the effects of radiation. Over the past three weeks since I returned to work, I have felt well overall with only the occasional day when I left exhausted. At last I am seeing peach fuzz on my head, very fine and all white. Eyelashes are starting to appear, and my fingernails are slowly growing in healthier. Some neuropathy remains in my fingertips, but it is definitely improving. I do have a new perspective on life and am determined to keep my priorities straight.

I met with my radiation oncologist today and made a plan for the next phase of my cancer treatment. Tomorrow they will “map” out my treatment area which apparently involves a CAT scan, 3-D imaging technology, and some tattooing. In two weeks I will begin receiving radiation 5 days a week for total of 28 sessions (this is good news because I was under the impression it’d be a week longer). Side effects should be fewer than with chemo, mainly fatigue and skin irritation (best case scenario, sunburn sensation; worst case, painful peeling and blistering... time will tell). I still have some side effects which are lingering from chemotherapy, the most annoying of which is the recent development of neuropathy in my fingers which makes it difficult to pick up small objects or button my clothing. My return to work last week went smoothly, and my energy levels have been good. I am still having some trouble with name and word recall (lingering “chemo brain”) but nothing so major that it’s obvious. Those who have noticed seem to find it amusing. I am doing my best not to get overwhelmed catching up from my absence, but rather I am enjoying the work and the opportunity to challenge myself.  

My last infusion went without any issues; this time I didn't even get the expected hives the following day. To make it a more celebratory atmosphere on Friday, my husband played his ukulele for me and the other patients throughout the day. As the last half hour of my taxol drew near, my friends from the unit I work on in the hospital came down to share the moment. Decked in a pink boa, cape, necklace, and glasses, I listened to “better things are on their way” then toasted some sparkling cider to mark the end of this challenging part of my treatment. We walked out the door and I rang the cancer bell three times to announce to all nearby that my chemo is over! Last October I remember feeling that this phase was never going to end, but here I am on the other side. I made it through with some (but not all) side effects and no major complications, ready for the next phase (33 sessions of radiation) which I expect to be much easier to tolerate. To celebrate, that evening my family took me bowling, then out to dinner and a movie. It is times like this when I actually feel normal and can imagine a life when the cancer is all past me. After a week of some fatigue and joint pain, I should slowly return to my previous healthy state as my cells repair the damage inflicted by the chemo medication. My hair, eyebrows and eyelashes will take many months to grow back; hopefully my habitually runny nose, dry skin, and anemia won’t take as long to recover. I plan to have my port removed as soon as possible, will be returning to work in a week, have an appointment with the radiation oncologist in two weeks, and a consult with plastic surgeon regarding my breast reconstruction scheduled for April. Moving forward! I feel extremely blessed with the friends and family who have been there for me, helping me to stay optimistic and less scared. I am so grateful!     

My seventh chemo infusion is now behind me. Based on my reaction last time, I was armed with a better cocktail of drugs to help minimize an allergic reaction. The day after treatment I did wake up again with some hives, but this time they were only on my face and neck and faded as the day went on. Overall I am feeling well, though a little tired from taking Benadryl around the clock. I discussed returning to work with my provider, and it looks like I will be back as planned on January 25. I very much look forward to being more productive on a daily basis. This year my new year’s resolutions are a little simpler. I am focusing on what is really important: being the best mother that I can be, maintaining a healthy weight and fitness level, investing in quality time with my close friends, and challenging myself professionally. I have come to terms with the fact that this cancer may still be in my body... waiting to rear its ugly head again a year, two years, five years from now. But I am adament that I will not live in fear. I want to move forward with the assumption that the treatments have been effective and that this experience has given me a chance to re-prioritize my life and focus on the things that matter most and make me happy. I plan to limit the amount of time I spend with negative people, to be optimistic and forward-thinking, to be kind and generous on a daily basis, and to remind myself frequently of all the reasons I have to be grateful. It’s time to let go of self-doubt and to stop worrying about what others think of me. Life is just too short.       

My sixth chemo infusion went smoothly on Friday, but apparently with a little time to reconsider my body decided it didn't care for the drug. When I awoke Saturday morning I was covered in hives from head to toe, eyes swollen, skin itching. A call to the oncologist confirmed that all I could do was take my prescribed steroid and some Benadryl, and as long as I had no chest tightness or trouble breathing the reaction should improve with time. Thankfully by Sunday morning I was feeling better. The question now is whether it is safe to receive taxol again or if we will need to switch medications to something in the same drug class but with less chance for allergic reaction. My hematocrit has continued to drop and my shortness of breath has become more frequent, so it was decided that I could benefit from a blood transfusion. So here I sit in the cancer center chair this Monday morning as a unit of blood infuses. Though the staff and the care has been great, I have grown to hate this place... the noises, the smells, the nausea that hits me when I walk in. I look forward to the day when I no longer have the need to be here. Soon I tell myself, soon.

One week out and I'm still struggling with joint pain and fatigue. It doesn't take much to exhaust me and make me short of breath, so by the afternoon I can usually be found on the couch. The back, hip and knee pain make it difficult to sleep, so I awake frequently to change positions. My oncologist told me to take tylenol and a corticosteroid for a few days to help with the pain. This did improve things some (it's less sharp and constant), but I still feel incredibly achy and so much older than my 44 years. A few weeks ago the hot flashes started off mild and infrequent, but now they're coming fast and furious. Just today when one came on while Christmas shopping, I had to drop my gifts and peel off my jacket and sweater in the store. On the positive side of things, it has been REALLY nice to not be plagued by constant nausea like I was with AC, and my appetite has been good overall. On Tuesday I attended a BRCA survivor group nearby and really enjoyed the art therapy and support. The past two days I volunteered in my daughter's school which made me feel more productive and like myself. And now that my last chemo session is only five weeks away, the end feels like it's nearing and I can look forward to getting back to work and feeling healthier. I can do this!

My taxol infusion went smoothly. Since over a quarter of patients experience an allergic reaction to its contents, they pre-medicated me with two types of histamine blockers plus a steroid and ran it in slowly over three hours. It was a long day-- the 5 1/2 hours in that chair at the cancer center seemed endless. The IV Benadryl made me feel funny and extremely restless, making it difficult to stay still or rest. I had no hypersensitivity reactions and overall have been feeling well the 24 hours since. Taxol comes with a new set of side effects, but since we're dealing with a single drug instead of a two-drug combo, hopefully they will be fewer. I have noticed some aching in my hips and knees, so we'll see if that worsens over time. So far nausea has been minimal! My red blood cell counts and platelets have continued to drop (H&H at 8.5/24.9, PLTs at 108). If my shortness of breath or dizziness worsens, I will need to go in for a blood transfusion. So far these symptoms seem limited to exertion and are not interfering with normal activities, so I'm holding off for now in the hopes that my levels with improve with time (Taxol is less likely than AC to worsen anemia). When I asked my oncologist about the follow-up plan, she explained that we will assume there has been no metastasis (meaning no additional scans) unless I become symptomatic. We know there's no macroscopic cancer anywhere (no visible tumors were seen during my original scans). We don't even know for sure that the cancer has spread to my bloodstream in microscopic amounts, but that's what this chemotherapy regimen is for-- to get rid of it if it did. When I asked her about my port, she said "I see no reason that it shouldn't be able to come out as soon as you're done with these eight treatments. Gone!" Music to my ears :)

That’s what my infusion nurse said to explain why they would recommend that I  keep my internal port for a “while” after my treatments are complete. To me this felt like a slap in the face. Instead of the message being ‘you're going to beat this and become cancer-free,’ the nurse was implying that the odds aren’t in my favor and there’s enough of a chance that there will be more cancer found once I’m all through to require additional chemotherapy. Hard to keep a positive outlook when it’s presented like that. At first it made me immediately insecure. Is it likely they will find metastasis in the next year or two? Then I got angry. Who is she to predict my long-term outcome and put a dent in my hopeful outlook? This session was supposed to be a celebration that I was through with the worst of the meds and had passed the half-way mark in my treatment; instead I felt defeated and less sure of my prognosis. Lastly, after having two weeks to think about it, I have gotten a little scared and emotional. Though not easy, I am able to get through this as long as I can imagine a time next year when it’s all passed and a long, healthy life afterwards to resume. All the fears which came with my initial test results and staging have resurfaced. As the chemo puts my ovaries to sleep and my estrogen levels plummet, I’m finding it more difficult to maintain my usual positive spin on things. In fact, my body seems unable to cooperate with my mind, causing tears to surface over the littlest of things. I have started a gratitude journal and am hopeful this will help me to put everything in perspective again. My plan at tomorrow’s treatment is to question my physician about what to expect for monitoring and outcomes after this treatment phase is over. For me it can’t come soon enough.      

I’ve now finished half of my chemo treatments (4 out of 8) so no more “red devil” (aka Adriamycin) and Cytoxan for me! Last week was a really good week (there were times when I actually felt normal) which was unexpected considering how bad the week before had been and the fact that I had stopped taking zofran due to its side effects (still taking compazine though). I didn’t start feeling sick again until mid-afternoon today. I figured that I’d better blog before “chemo brain” sets in since I know many people are wondering how I’m doing. My blood counts are all hanging in there. I’m a little anemic (H&H of 10/28), though my reds aren’t low enough to postpone my treatment or require a transfusion. My whites and platelets are on the low end of normal. Potassium is still low, so the dietician tells me that I need to eat more bananas, kiwi, and nectarines. Thankfully fruit is one of the few things my stomach can tolerate these days. That and cereal, yogurt, trail mix, Italian ice… seems like my taste buds the first week after chemo prefer cold and sweet. The low point for me today was when the infusion nurse recommended that I keep my IV port in as long as possible in case something shows up on my scans and I need more chemo. Say what!?! I informed her that metastasis is totally not allowed. But really, what was she thinking sharing such a depressing thought?!? Anyway, I’ll deal with that decision later I guess. My plan is to sleep most of the weekend and hopefully come out of the fog somewhat by Monday or Tuesday. Keeping my fingers crossed for a good Thanksgiving day!

This third treatment is really kicking my butt. Within a few hours of returning home from the cancer center on Friday I was nauseous, the sight and smell of food completely distasteful. The next day I took a nap, followed by another nap, then finally I fell into bed fully clothed at 8PM to sleep for eleven hours straight. Sunday held a similar pattern, two naps and an early bedtime. It’s as though I’m in a fog, not capable of holding much of a conversation, frequently zoning out and finding myself staring at nothing until someone brings me back. At one point this weekend my daughter asked, “mom are you alright?” I guess I wasn't hiding it very well. I cannot focus enough to read. I don't have enough energy to work on a project. And I’m cold all the time, spending most of my day in front of the pellet stove for warmth. The last two nights I slept with a fleece hat and sweatshirt on because I just couldn’t seem to warm up. If I change positions quickly I get dizzy and short of breath. I force myself to eat because I know that I should, but everything tastes wrong. My body is dehydrated, skin dry, mouth parched, but I find it difficult to drink since everything tastes metallic. I hate the way I feel... so unlike myself since the chemo has taken me hostage. I remind myself that these crappy days will pass, but somehow it doesn’t make me feel all that much better since I have to live through it in the meantime. I’m expecting the week following my fourth (and last) adriamycin/cytoxan treatment to be my low point during chemo, then the infusion nurses promise that the change to taxol for my last four treatments will bring fewer side effects, or at least less nausea. Either way it’ll all be done by the end of January. Luckily Thanksgiving and Christmas will fall during my good weeks (7-8 days after treatment), so if all goes well the holidays will be somewhat normal for me. Now let me see if I can get some pomegranate water down...       

Today marks Day 25 of my chemotherapy course, one quarter of the way through. Part of me is excited to have reached this mini-milestone, but another part is daunted by the remaining three quarters ahead of me – especially knowing that it’s to be followed by a course of radiation treatments. I just cannot believe that cancer will be taking charge of my life for so long. When all is said and done, it will be a year and a half – the beginning marked by my diagnostic screening in July, the end by my last reconstructive surgery next winter. In some ways, I wish I could fast-forward through this treatment phase because, to be honest, it isn’t much fun. When I look in the mirror and see the new bald, flat-chested me, I do not recognize my former self. But on the other hand, this coming year will also bring important moments with my children, positive memories with my family and friends, and lots of time for self-reflection. Those are all worth slowing down for and treasuring when they occur, even if it’s amidst the lows of cancer treatment. So next quarter here I come! 

When I first learned that acupuncture was offered at the cancer center I wasn't sure how I felt about it. How can these small needles relieve my symptoms? Last week I attended a cancer survivors event at a local hospital, part of which was an hour long tai chi session. Again, I questioned it. How can these controlled movements improve my health? But the research shows that needles placed in the right places can stimulate hormones, improving things like nausea and pain. And tai chi has been shown to benefit immune health, inflammation, pain, even sleep and anxiety. Considering how nauseous I feel the first week after chemo and how much joint and bone pain I experience after treatments, they were certainly worth a try. I found tai chi to be wonderfully stress-relieving yet energizing. First of all I spent so much time focusing on my breathing and moving in the right ways that I didn't have time to think about my cancer... a lovely respite! As I moved along with the instructor it soon became clear how this over time would improve my strength, balance, flexibility, range of motion, and coordination. It is even considered a moderate aerobic activity. After the class I made arrangements to begin a cancer recovery program three days a week through the gym owned by my hospital, which includes tai chi as well as some stretching and strengthening work. My nurse navigator helped arrange my first appointment with the acupuncturist yesterday, and I arrived not knowing what to expect. Surprisingly the session was so relaxing that I may have even fallen asleep at one point! And the good news is that my nausea seemed to immediately improve. It did return later last evening (he warned me that acupuncture has cumulative effect and usually requires at least twice a week sessions), so I will be back there on Thursday for another one. My battle with cancer has brought me to many unexpected places, but not all of them are bad. I am so much more focused on taking care of my whole self now... whatever path that may take.

My hair loss did not come without warning. It began as an itchy scalp on Sunday, followed by “active” follicles (a crawling feeling) which I noticed as I lay in bed starting Tuesday night. Then came the scalp irritation (sunburn sensation) which I could feel whenever I touched my head beginning Thursday morning, so my solution was to touch it as little as possible, suspecting it would only make things happen sooner. Friday morning when I awoke I noticed a few hairs on my pillow, then quite a bit more in the shower, and even more when I brushed my hair. It wasn’t coming out in clumps yet, so I continued getting ready for my second chemo session and started mentally preparing myself to shave it later that day or the next. Though my kids wanted nothing to do with the actual shaving (in fact they were adamant about it), I did my best to prepare them for my hair loss to happen in the near future, and they seemed okay with the idea. Thursday morning on the ride to the bus stop, my youngest asked a number of questions about what my wig and scarves would look like on. She wanted to know if the scarves would be folded like a hijab (Muslim head covering), but I told her that I would look more like a gypsy than anything. After school I tried on one of my scarves for her, and she announced that I looked like a pirate! After returning from chemo Friday afternoon, I noticed strands of hair sticking out of my scalp in all directions. A pass through with my brush pulled even more out. I grabbed a large handful of hair on the side of my head, and they just slipped right out. I told my husband that I was ready... he set up a stool in front of the bathroom vanity, got the clippers ready, and started playing “The Fight Song” by Rachel Platten on his iPad (my oldest daughter’s and my favorite reminder these days for me to stay strong). I had expected to feel like crying at this point, but as the hair fell to the floor all I felt was relief. Somehow thinking about the inevitable loss and worrying about when it would happen was worse than actually losing it. This was just one more hurdle to conquer on my journey to becoming cancer-free! We finished up by using smallest clipper size, and thankfully my head turned out to be fairly round (you just never know until you see it hairless). I took a long shower (no shampoo needed) then spent a while picking out my first scarf to wear. My oldest daughter had a home soccer game starting shortly, so I would experience my hairless debut without much delay. When we got to the game I said hi to my daughter, and she gave me a thumbs-up from the bench :) I climbed up the bleachers without anyone gawking or saying anything, even received a few “Hi, Diane’s!” Ironically a little later on in the game, my trying to stay under the radar backfired. When I got up to meet a friend who’d brought me a hot chocolate (it was a cold day to be outside!) I managed to trip and my leg fell down through the bleachers, causing EVERYONE to turn and stare at me. I tried to downplay it by acting like it was no big deal and didn’t hurt, but the truth is I was embarrased and it did hurt (I dreaded looking at those bruises later considering my lab work showed low platelets that morning). Oh well... such is life! When we returned home later, I showed my new look to my youngest daughter, and she announced that I looked less like a pirate and more like one of those buddhas who sits crossed-legged and meditates (I think she was referring to their turbans). I guess I can live with that!