I've been thinking about the word "strong". When you have cancer you hear it often. Stay strong! You're so strong! Strong has the best of intentions but it doesn't fully capture or acknowledge that sometimes along the way to strong, you are often the furthest thing from it.
This second round of chemo made me question how strong I am. At my lowest point I was having serious doubts if I could make it through it. That's scary because there's not really a choice. It's this or eventually die of cancer. Am I too much of a wimp? How can other people do this and not me?
You're told that with each dose of chemotherapy, the side effects are cumulative. Basically it gets worse as you go. Some fortunate people have very little side effects. Some have it way worse than me. There's no special characteristics for people that do better than others. You just have to go through it to find out for yourself. Good luck!
What they don't prepare you for is the cumulative mental effects. It's a roller coaster of emotions and you can't help but worry if what you're going through will be worth it. Will it get all the cancer inside me? Will I really be cured? When you think about it, it's insane that they don't immediately hand you a therapist's card as soon as you're diagnosed.
My frustrations have turned into anger towards how the media portrays cancer. What most of us see are pink ribbons, walks to raise money for a cure, and celebrity survivors. What we hear is the uplifting story about the strong survivor and the happy ending. What we are told is that you should be positive and live strong. They don't show the struggles, pain, and reality that most people go through. For cancer patients it's a hard expectation to live up to. You really can't.
My second round of AC chemo on Friday, August 28 was hell. When I could find humor in it, I joked with Jason that I just don't like to have a boring time. This second time, it seemed like I couldn't catch a break.
I'm giving you the rundown of how the two weeks went not because I want a pity party. I'm telling you so you can know what one person's experience with chemotherapy is like. You'll think differently when you see a pink ribbon. Even better, maybe it'll encourage you to learn more about cancer so you can hopefully reduce your risk of getting it.
Days 0, 1 & 2: Avoid nausea
The second infusion was fairly straightforward. I learned the hard way with the first dose that anti-nausea medicine is my BFF. I tried a new one this time, Ativan, and it helped me sleep through most of the first three days without nausea. When I was conscious I was very careful to eat frequent, small, bland meals and drink lots of liquids to flush the chemo out of me.
Right now food is functional. It's about trying to get calories, energy and avoid upsetting my body. Messed up taste buds and a heightened sensitivity to smells and textures makes finding food to eat hard. It's funny because you're taking anti-nausea medicine to avoid throwing up but the side effects are that it plugs you up. I've never taken so much constipation medicine in my life. The nurse warned me that I did not want to have to get unplugged at the hospital.
After every AC dose, I have to start daily shots of Neupogen to help my body create more white blood cells. Jason does these in my stomach. Some days I can't feel the shot but some days it hurts. I hate the shots and Jason deserves a medal for giving them to me and putting up with my whining.
Days 3 & 4: Total exhaustion
I tried weaning myself off the anti-nausea medicine because I was hopeful I may start turning the corner. I don't like taking so much medication. Plus sleeping all day starts to get to you. Looking back I think another day of Ativan would have been better.
The fatigue was horrible. My body felt like cement. I wanted to lay down as much as possible. Going up or down stairs made me winded like I ran a block. It is beyond frustrating. You don't want to move and you're going stir-crazy after days in the house. I have three spots in the house. Our bed. The chair by our bed next to the window. Our living room couch. That's about the extent of my daily movement. You feel like you're living in slow motion while the rest of the world is moving on.
I can only sleep for a couple hours at a time at night. It feels like you're working on adrenaline. Eyes are tired. Mind is tired. But your body will not cooperate. I try all the tricks but can't seem to get beyond a 4 hour stretch. This lasts most of the two weeks.
My brain starts feeling the chemo fog. Reading is hard. I try to do my crossword puzzles but find I'm not as quick to recall words. It can be difficult to have conversations. I watch a lot of movies and I'm currently on season 3 of Big Love. Highly recommend.
This is when I really start sliding mentally. You try to play mind-games so you don't go to that dark side. You're not feeling good. This will pass. Just focus on each day. This is the chemo talking, not you. It becomes a hard game to win so I called the hospital social worker to hook me up with a therapist who specializes in cancer patients.
Day 5: Thrush
I woke up to discover my tongue was covered with white stuff and felt prickly and dry. Great. One of the many joys of chemo is the possibility of mouth sores so you're careful to avoid spicy, acidic foods and brush your teeth after every meal. But this wasn't mouth sores. This was thrush. Never had it before but after a quick google, I knew I was about to experience it.
I was already having difficulty eating and thrush made it even harder. My tongue felt like sandpaper and chewing food was difficult. The dryness was particularly strong at night. When I'd wake up, it felt like I had a sock stuffed in my mouth.
The highlight of the day was my first outing of the house— a walk around the block. Sadly my body can only handle that distance at a snail's pace. Jason keeps me company on my walks and ensures I make it home.
Day 6: Another prescription
I visited the doctor's office to deal with my mouth. As soon as I saw Diana, the nurse practitioner, the exhaustion and emotions came spewing out of me. Diana tries to say what she can to cheer me up. She even said they think anecdotally the harder time you're having, the more likely the cancer is being killed. Hmmm... I'd like to think but...
Diana confirmed I have thrush, which is a yeast infection in your mouth. Serious yuck. Because my immune system is not up to par, I'm susceptible to lots of infections. To treat it, I have to swirl this nasty-tasting, yellow medicine, Nystatin, in my mouth for as long as possible and then swallow it. Do this every 4 hours, 4 times a day for 7 days. My list of prescriptions is growing longer.
Days 7 & 8: Turning the corner?
Every night when Jason tucks me into bed (me = lucky!), he tells me that I've made it one more day. Thursday marked a week from the chemo infusion and 3 weeks total of chemo. Each day seems like forever but when you hit those weekly milestones, you have a brief moment of hey, that went by pretty fast.
Saturday I felt good enough to walk almost a mile. Since Wednesday we had worked on increasing my distance. Speed is maybe up from snail to turtle pace. I rested half-way at the nearby school playground to soak up some vitamin D. It was a good day and I felt like I was finally turning the corner.
I'm a little worried that I'm getting a sore throat. Our 4-year old had a cold on Monday and then Jason has been feeling sick too. Sadly with my weakened immune system I try to avoid them as much as possible which really is impossible. With my germ-paranoia I try to avoid physical contact in general which feels isolating.
Day 9: ER visit
I woke up this morning with my right armpit feeling really sore. Oh crap, maybe something's wrong with those lymph nodes. I force myself to push it out of my mind (hard).
After breakfast I start getting chills and feeling hot. Jason takes my temperature. It reads 101. Immediately we're worried because I'm supposed to go to the ER if it's 100.4. We try it again and it reads 100.4. Huh? We try it again. 99. Jason's getting frustrated. Damn thermometer.
Long story short we end up going to the ER at Overlake. Worst case they send me home. When we get to the ER we wonder if we're in the right place because there's no one there and it looks like the lobby of a hotel. Oh, yeah, we're in Bellevue so we shouldn't be surprised.
We spent almost 3 hours in the ER and in that time watched Rocky III and Rocky IV on the hospital tv. Forgot how much I love Rocky. Turns out I was neutropenic (severely low white blood cell count), anemic and my body was likely fighting an infection. The armpit pain was an infected hair follicle (ugh). Any sort of cut or abrasion can easily get infected. The ER doc consulted with my doctor and they agreed I had to be admitted.
I was finally wheeled up to my room around 9 at night. They started antibiotics down in the ER but I was feeling horrible. I was hot, my face was red, lips were swelling and I was getting a rash on my chest. The nurse realized I was having an allergic reaction to the antibiotic. All I could do was laugh because it was just one more thing going wrong.
It was a long night. Jason left to relieve the big kids from babysitting our littlest and to get some rest and dinner. I didn't get to sleep until after midnight.
Days 10 & 11: Hospital time
It's funny that a hospital is the hardest place to get some sleep. It's next to impossible to sleep well between nurse shift changes, techs taking your vitals, nurses changing your IVs and giving you medicine, and the stupid IV machine beeping if they don't set it up right.
The first 24 hours I was put in isolation so everyone had to wear gowns, masks and gloves to come in. A bit surreal. After tests showed that I didn't have an infection, no more isolation.
It wasn't the best Labor Day ever. I watched a lot of tv. Jason stopped by a couple times to keep me company and take me for short walks around the hallways with my IV in tow.
Days 12 & 13: My first (and hopefully last) migraine
Tuesday morning my blood work showed that my white blood cell counts were back to normal. I was still a bit anemic so I should take it easy. Dr. B said I could leave the hospital if I wanted to or stay one more night. I was ready to go.
It felt good to be home and I settled into bed per doctor's advice. I thought the worst was behind me. I was wrong. I had a headache in the afternoon and that night it turned into a brain-pounding migraine. Jason gave me leftover pain medicine from my port surgery and that luckily knocked me out. In the morning I vomited. Not fun. But it was over. I spent the rest of the day paranoid that it would come back.
Day 14: The best day yet!
This was absolutely the best day I've had yet on chemo. Hooray! I frickin' deserved it too. I was doing so well that I was able to go to our 4 year-old's preschool meet and greet. I cried tears of joy when I started walking into the school.
Sitting at the dinner table tonight with all the kids and Jason felt normal. Amazingly, wonderfully normal. It was so nice to listen and talk with everyone and just enjoy their company without feeling like chemo was there.
It was a great way to mark the milestone of 4 weeks of chemo down.
While I was hospitalized, Dr. B, my medical oncologist, said that some people's bodies just don't metabolize the chemotherapy the same. It's not my fault. I'm not a wimp. It was his responsibility to tailor the treatment so I don't go through this again. He assured me it's about my body. It's not about me as a person, that somehow I can't handle it. It was a total "weight lifted off the shoulders" moment for me.
These two weeks have made me realize it's okay to admit weakness. In fact, it's really good to follow your instincts and advocate for yourself when you are down. You don't have to stoically deal with it when you can't control it. My body right now is so not normal. It's sick, it's fighting, it's saying WTF are you doing to me?
Strong is really a more flexible word to me now. I may have five minutes of strong when I get the energy to take a shower or strong may come from reading a friend's encouraging email. Strong is not something I have to be all the time. It's finding it when I can and being okay when I'm not.
Next: Chemo III
Tomorrow is my third AC treatment. Yep, there's some anxiety. Will Dr. B really be able to modify it so it's easier? What new side effects will I get? But there's also a healthy anticipation of the fight and a confidence that in the end I'll get through it, no matter how ugly.
I think I'm a lot like Rocky (remember I just watched the Rocky marathon in the hospital). Rocky gets the crap beaten out of him but he wins in the end- just like I will. Rocky III is not one of my favs in the series but it is memorable for Mr. T who plays his opponent, Clubber. If only I kept the mohawk.