I’ve HAD it. I’ve reached my breaking point. For those of you who want to read about sunshine and rainbows, this isn’t your post. For the past week and a half to two weeks, I’ve been fighting this low grade fever and I feel like nobody is LISTENING to me. I don’t feel well. I don’t feel right. I feel chilled to the bone, ache-y and extremely fatigued. I think “bone-tired” best sums it up.
When we texted with Garrett he told me to take tylenol and zyrtec-D and to let him know if the fever broke 101.5. Because at 101.5 your body is officially fighting an infection. Well, even at 100.9 — I assure you, I felt like complete shit. Especially when it went on for days upon days. But there were no obvious signs of infection at my port, so it was either just a side effect of the Taxol or an infection. Only time would tell.
Over the weekend, we went to Seattle for the C4YW conference and I still had my low-grade fever — so I was back in the hotel room every night by 5 and asleep by 8:30 — what a waste. By the time we landed on Sunday night my fever rose to 101.4. Still not 101.5 — so I took Tylenol, let Garrett know and told him I’d check back in on Monday (if my temperature remained high the next day, he’d want me to come in for blood work). I’ll post more on C4YW another day — when I’m in a better mood.
Monday morning we had to go to PAMF for two different appointments. One at 10am with Dr. Leibowitz and one at 2:30pm with Dr. Hong. Since Palo Alto is so far away, we’d have to kill time between appointments — I wasn’t looking forward to this because I was still feeling really sick. At my 10am appointment, they checked my vitals, I was at 100.4. Dr. Leibowitz suggested I talk to Garrett again (I told him I’d be seeing G the next day and he would be drawing blood etc).
After that, we were off to kill time between appointments. Paul decided we should go sit outside at the Stanford mall so he could do his work and take his 12:30 conference call. Oh joy, I am chilled to the bone and have to sit outside for 2 hours (no I couldn’t walk around and window shop — that’s how tired I was. I thought about going into Nordies and napping in the ladies lounge. I always see women in there breast feeding — so why not let a cancer lady take a nap?). Even in the direct California sun, I was still cold in a v-neck t-shirt, underneath a long sleeve button-up underneath a puffer vest and jeans tucked into Frye boots. I reached a new low, I was that beat-down, crazy cancer lady who sits by herself on a bench in the middle of the day at the outdoor mall. WTF?
Then, to add insult to injury, we finally get to my appointment with Dr. Hong and he wouldn’t fill my expanders because I was running a temperature (don’t get me wrong, I’m thankful his decision was one to keep me out of harms way — but I wish I had known, because we could’ve just gone home after our first appointment and avoided the mall fiasco altogether).
Dr. Hong also said that the tissue at the top of my left breast is getting weak so he wants to avoid a fill right now because that would just further stretch the top of my boobs, which is not what I need right now. I don’t know if that means he will never fill my expanders again and I’m stuck with the size boobs I have now whether I like it or not. All I know is he said I need to wait another 4 weeks before coming back to see him. That means it will have been over 11 weeks by the time I get my next fill (IF, I get another fill that is).
The shittiest thing about cancer is you have NO control over anything (well, you can control your attitude and outlook on things — which I’m clearly having a hard time with right now). You have to surrender yourself to it. You have to put 100% of your faith in your care team and loved ones, even when they might disappoint you.
Fast forward to today — “chemo Tuesday” and I woke up still feeling like shit, surprise, surprise. Tears streamed down my face as I told Paul that I didn’t even have the energy to take Lucy out for her morning pee. The thought of walking downstairs to the backyard was too much. I think he thought I was being overly dramatic — so he gave me a pep talk and told me to put on some shoes and take her out — it would be good for me. Which I did — but I felt dizzy and weak the entire time. After that, more tears appeared as I sobbed to him that I REALLY didn’t want to go to chemo today. I couldn’t fathom getting another infusion that would make me feel shittier than I already did. They tell you Taxol is supposed to be way easier than AC — but I am here to tell you that they are lying. Yup, supposedly Taxol #1-9 would be fine but 10,11 and 12 would be rough because of the cumulative fatigue. F-that noise. That is a complete lie. All of Taxol sucks the life out of you — at least in my limited experience thus far.
When I got to Garrett’s and they took my vitals, I had a temperature of 102.2. NOW maybe somebody will take me seriously. Garrett walked in and it was patently obvious that I looked like complete shit, in fact, I overheard him tell Tasha that “she feels like shit and looks like shit” ha! In any event, he said that some people do run a low grade fever on Taxol but that no chills would be involved, in fact, they’d be none the wiser. But since I have chills and look like shit and finally crossed the 101.5 threshold, he could rule out low-grade Taxol fever. He wanted to check my white blood cell count. He said that if it went up since last week, it meant I was indeed fighting an infection. He also listened to my lungs and said that they sounded bad. He said that I likely have walking pneumonia and that we’d be skipping chemo today and dripping IV antibiotics instead (my WBC count did indeed come back elevated week over week).
As mad as I am at the world right now, I’m so happy I finally got some antibiotics on board. I couldn’t have gone another day feeling the way I was feeling. Garrett said I should feel like myself again by Thursday (I’ll take the rest of the antibiotics in pill form starting tomorrow). Hopefully that’s true and my next post will be less of a downer.