Worst Day Ever or What I thought was---Hoo boy!
Worst Day Ever: Just Stop Already
April 12, 2017--It’s been several weeks since I last wrote. I’ve had chemo treatments 3 and 4. Lots of visitors coming and going. The third treatment was fairly uneventful and fun since my daughter and 3 -year-old grandson Henry went with me. The nurses all loved Henry who made all kinds of friends. The only downside was an obnoxious old guy getting chemo who wanted to talk to me about abortion issues. I calmly said, “You know, abortion is at an all-time low.” Brother!
A few days after my third treatment, I noticed I was a little out of breath as I walked, which is unusual for me since I’ve always run. Actually, my husband noticed it and mentioned it to my doc who then asked him if I needed another echocardiogram. I thought it was unnecessary; I have a strong heart. I thought maybe it was related to my lowish red blood counts. I remembered from physiology that red blood cells carry the oxygen to your system. After the third treatment, I continued to fee tired and while I was enjoying family visiting, sometimes I felt the strain of having people wanting me to say that I felt good when I didn’t. People who haven’t been through it have no clue. Even well-meaning people who have had breast cancer or friends who had cancer without the chemo don’t have a clue, and they start telling me about energy work and acupuncture when I’m like, “Seriously? I can barely get out of bed to make it to my doctors’ appointments and you want me to make more appointments? When I feel that good I’ll let you know.” Maybe there is a better rhetorical way for them to express their desire that I benefit from their knowledge or their friend’s knowledge. Mostly I’m just irritated and want to smack them.
While none of the weeks after chemo was pleasant, this 4th round of A&C hit me hard. On Thursday April 6 I had the usual chemo. I was weepy that morning. Depressed. Tired. My doc did a manual exam in the office and she said that the breast at least felt smaller, which to me translated to maybe the tumor has shrunk. I started to cry because I was tired of being strong. I also was grieving because I kept saying, “What if I had not noticed this swelling?” She said “Do not think that way. We got it just in time?” She was very kind and sincerely kind words at this point make me cry. As for my tiredness, my red blood cells showed that I was at 10 and I know that they transfuse at 9. She suggested that I was out of breath because maybe they had gotten down to 9 at some point and rebounded. My doc said that she was going to try to get me approved for an experimental drug called carbonplatin that has had some success with totally eradicating breast tumors.
With that news I went on down to chemo 4, same drill. (I think maybe I get steroids and fluids first, cytoxin and then the Adriamycin. I may have messed up that order before.) I took pictures of the procedure—showing the gowns and gloves they have to wear when they give me the red devil—it’s that toxic. Also I found out that you eat a popsicle while getting the red devil because it’s killing off cells in your mouth as are getting the infusion. The cold of the pop stops the destruction of cells. After this last treatment before I left the room, the nurses took a festive polaroid of me and Dan brought me a balloon.
I always feel pretty great after steroids and chemo. Depression gone! Dan and I then headed to a retreat up in Asheville for a local homeless shelter. I knew it was a risk but it was a get-away in a beautiful setting—Grovepark Inn—and I figured the steroids would semi-protect my crash for a few days. For the next 3 days I went to events for the weekend, crashing only a few times. I took my anti-nausea meds which helped. The only downside was that by 8:30 I was ready to go to bed. I think most people understood and several commented that I looked pale by Saturday.
We got home on Sunday around 1. I wasn’t able to nap because friends were bringing over a basket of goodies and plus I was a bit energized by the fact that our realtor was hosting an open house at the house we are currently trying to sell. I started feeling sicker and sicker. Two friends picked me up at 5 to take me to see the writer Anne Lamott, but we were to go to a church beforehand and have drinks and snacks. I was not hungry and wine tastes awful to me, now (bummer, rights? )but I was grateful to be invited. Lamott was fantastic as usual and the venue was crowded, so by 8:30 I was fairly fainting in the pew where I sat. When my friend asked if I wanted to stay to get Lamott’s new book signed, I said, “I’m dying here.” My friend was very understanding but I got home about 9, sick and exhausted.
Monday, the next day, I had to get my dog from boarding and tried to take it easy. But that night I had another venue to attend that I couldn’t easily get out of. My husband had kindly agreed to drive and pick me up so I knew that I would be dropped off at 6 and picked up at 8. Right before I left, the nurse navigator called me to tell me that my doc was trying to get my carbonplatin approved. I told her about my fatigue and she said, “The first thing we ask is are you getting enough fluids?” ( Yes. Probably) Then I started telling her about my busy weekend and she said, “You can say no. You need to take care of you.” Intellectually I knew that but again her words almost made me cry. I promised her after Monday’s venue, I’d rest. We both concluded there is always a cost to overextending oneself.
Those were prophetic words because by Tuesday, I was so tired I couldn’t walk more than 10 steps without feeling exhausted. I was more nauseated than usual even though I took extra medicine to quell it. I wrote my book group and cancelled our meeting for that night—there was no way I could host. I also told my friend Polly I was too tired to do restorative yoga with her. I was also freezing cold although it was 80 degrees outside. I put on two sweaters and a coat. I dragged myself to Starbucks for a venti latte which helped maybe a little to make me feel better. My husband was working a half day, so he served as my personal slave when I was too tired to get my purse out of the car and when I was too tired to retrieve my computer from upstairs. I’ve never been been this tired—not even during pregnancy when I was working two jobs. This all scared me. I wondered if I would have to be transfused, if this would go away. Dan kept telling me just to rest so I lay down at about 12 for a nap and cried over my fatigue and frustration. An hour later, I woke up and was hungry, so after researching foods withiron, I ordered a take-out plate of oysters, which was great although I was still weak and dreaded the small walk from the car to the restaurant! (Dan was off doing errands.) I spent the afternoon writing three birthday cards which took all of my energy. I wondered if I would ever be normal again. I continued to feel yucky and took a Finnergan (anti-nausea drug) before bed at 9.
And then miracle of miracles, I felt much better this morning! (Wednesday April 12). I was able to go to Starbucks with no trouble, went for awalk in the park and even went to the dreaded drugstore to pick up things I needed. It had been a difficult lesson but I know now, to listen to my body and just say, “NO!”
More things I’d like to pass on to friends who have cancer or have a loved one with cancer:
1) Don’t expect me to be perky all the time. I can see the look of disappointment and bafflement on people’s faces when I tell them I’m tired (although I may look okay). I want to say, “Expect it. They are pumping all kinds of toxic stuff in my body. What do you expect?” Then sometimes they want to fix me with their theories of alternative theories, energy work, acupuncture or whatever. Don’t do that. It’s stressful. Do you know how many people have suggested these things to me in the last few weeks? A lot. I’m a smart person. I’ll figure out what I need.
2) People want to tell me how great their docs are which is fine, but please don’t imply I could do better unless I ask for advice. That’s also stressful.
3) Back to my surgeon’s earlier excellent advice, don’t compare your experience to mine unless you’ve had the exact same thing and even then be careful if you tend to be cheerfully optimistic. Perhaps don’t even tell me that 4 out of 6 women in your book group have had breast cancer and they’re all fine. It exhausts me to explain that some chemo is different from others, and that I’m freaking tired and/or sick and I’m in the middle of it and it scares me.
4) Just let me rest when I need it. And note to self, do not be around people who stress you out. As an introvert crowds wear me out. Extroverts don’t understand that.
