carboplatin

Memory

Posted on by Beth Caldwell

I’ve lost my short term memory. Let me give an example of what this is like: the other day, I spent a half an hour looking for my warm coat, the one I get compliments on every time I wear it (thanks, ModCloth–secret of all my fashion success), and still couldn’t find it, so I gave up and went out with my raincoat instead and was cold all day. I’d hung my coat in the bathroom, not its usual place, and so I couldn’t find it. Could. Not. Find. It. The Boy spotted it that evening or I’d probably still be looking for it.

I now have to write everything down or I’ll forget about it. Thank goodness for technology–if I didn’t have a calendar I could check every morning to remember what my plans for the day are, I’d miss every doctor appointment, every phone call with a reporter, every lunch with a friend. If I don’t immediately respond to a text, I’ll forget I received it and never respond at all. I’ve had to warn everyone in my life that I’m not ignoring them on purpose, that it’s not a Seattle No, it’s just that I can’t remember anything.

I talked to #bestdocever about it, and he thinks it’s chemo brain from the carboplatin I was on this summer. I fucking hate carboplatin. It ate my whole summer. It’s left me still needing blood transfusions from time to time because it gutted out my bone marrow and I keep getting extreme fatigue from having low red blood counts. And then there’s the chemo brain. 

It’s scary not being able to remember anything that’s just happened. It’s not like going into a room and forgetting why you went in there–that happens to everyone as they age, and I can joke about it. No, this is something more insidious. It feels like it’s changing my personality. I used to be so on top of things, but now…in fact, I just told The Hubs something and he said, “Yeah, you told me that yesterday.” And I don’t remember telling him, at all. I’m probably that annoying person at parties who tells the same story over and over again, and I don’t even know it.

The good news is, #bestdocever thinks it’ll get better the further I get from the carboplatin. It takes 6-12 months for it to improve, if it’s going to improve. But that “if” is scary and I have plenty of friends for whom it never improved. The collateral damage of cancer treatment is lasting. It’s brutal and nasty and so incredibly unfair, especially for those of us who are going to die anyway, and the treatment is only buying us time, at a terrible cost.

Science: please help us. We’re suffering. Please find us better treatments, so we don’t have to live and die this way.

What’s Treatment Like: Chemo Again

Posted on by Beth Caldwell

It’s #MetsMonday again, and I’ve just finished my first cycle of Chemo 2015. It’s been an interesting few weeks. Let me recap.

So, let’s go back to last year’s chemo for comparison. I was on two drugs, cisplatin and etoposide, on a three-week cycle. I got both drugs the first week, and then was free the rest of the 3 weeks. Cisplatin in particular is an extremely harsh drug, so I spent most of the first week of the cycle doped up on antinausea medications that made me sleepy. Then I’d stop taking those meds and kind of wake up and say “Where am I, what day is it, what did I miss?” And then I’d go back to work, because I was still working then, and feel relatively normal.

This time around, I’m on carboplatin and paclitaxel, on a four week cycle. Carboplatin is similar to cisplatin, but a bit less harsh, and paclitaxel is a relatively mild drug, but I mean, it’s still chemo. The first week, I get both drugs, and the second and third weeks I get just the paclitaxel, and then the fourth week I’m off. Paclitaxel can be given in a higher dose once per cycle, so I wouldn’t have to come in every week, but that would increase the risk of me getting peripheral neuropathy. So, weekly it is.

The first week of this first cycle, I had my infusion on a Wednesday, and Thursday I felt fine. Well, as fine as I usually do–I get tired every afternoon around 2PM and just need to lay down, but that’s just my current “new normal.” No nausea, no new fatigue. My oncologist emailed to ask how I was doing, and I told him I’d folded a bunch of laundry and done the dishes and asked if these were real chemo drugs. He wrote back and said I was not allowed to fold laundry or do anymore dishes–doctor’s orders, he said. Best. Doctor. Ever.

Of course, my hubris was punished, because on Friday around noon, I started to feel a wee bit queasy and took a Zofran, and by evening I had a horrific migraine. It was brutal–I was horribly nauseous and sensitive to light. I think what happened is this: the drugs they gave me on Wednesday for nausea are similar to Zofran, and last a few days. So, I think the migraine was because I’d OD’d on Zofran. The next morning the headache was gone along with the nausea, but by then, more serious fatigue had set in. I stayed in bed all day Saturday, and on Sunday–Mother’s Day–I managed a shower before deciding I needed another day in bed. Luckily the kids came and cuddled with me and we watched movies together, so it was a pretty nice day.

The fatigue was less bad the following two days, and then it was time for week 2 and more paclitaxel on Wednesday. Thursday at 4AM, I woke up with horrible chills, and at 7AM I took my temperature and it was 100.8. I emailed my oncologist and asked for instructions, and he emailed back and said “I’ll be in the office at 8AM and you should be there too.” So, off I went, feeling pretty weak. They hooked me up to some fluids and drew some blood, both to check my red and white blood levels and to do a culture to see if I had an infection.

When the blood work came back, it showed that my hematocrit had dropped from 27 on Tuesday, to 22 two days later. My oncologist said “This has to be a mistake, we’ll run the test again.” But sure enough, the second test came back with my hematocrit at 21. So, my oncologist sent me across the skybridge to the main hospital building for a blood transfusion. One of the nice nurses wheeled me there in a wheelchair, because I was still feeling so weak.

By this time, it was lunchtime, so The Hubs (who stayed with me the whole day, bless his heart) went off to get me some food, and the nurses in the main hospital typed my blood–twice, because that’s standard protocol for first-time transfusion people–and then they put in the request for some blood for me, which takes some time to get delivered from the blood bank. I got two bags of blood, and it took about 5 hours to do the transfusion. 5 hours. Luckily, the hospital fed me dinner. By the time we left the hospital, my hematocrit was 29 and it was 10PM. That’s right, I spent 14 hours at the hospital that day. (Thank goodness for friends and my parents, who helped out with the kids for us.)

The transfusion incident scared the shit out of everyone except me. Maybe I’m naive or in denial or something, but I trust my oncologist to be able to handle stuff like this, and he did. It was a long and unpleasant day, but it was just a day. And the next day, I woke up feeling AMAZING. Like, better than I had in months. Which was great, because that night I was signing books and doing a reading at MamaCon, which was a BLAST and you all should attend next year! The feeling good continued for several days, and when I had my blood draw before my third week of chemo, my hematocrit was at 34, which explained the sudden burst of energy. After that third infusion, I didn’t need any nausea meds and my fatigue level was at its usual 2PM exhaustion level through the rest of the cycle. 

My hair started to fall out the day of that third infusion, like, in clumps, so I had The Hubs shave it off that night, in the back yards, with the kids watching because it’s less shocking for them that way. Last year when we shaved it, I cried and cried and I hated looking at myself in the mirror, because I still wasn’t used to seeing Cancer Beth. But now I’ve been Cancer Beth for a long time, and I’m slowly getting used to seeing her in the mirror. 

So, this time around, losing my hair was much less emotional for me, and I’ve mostly been going around bald and not feeling self-conscious about it. I did wear a wig to The Boy’s birthday party at his request, because my head was still kind of stubbly and we both agreed the wig would look better in pictures. And sometimes I wear a hat, because you’d be surprised how cold your head gets without hair on it–and on sunny days, I don’t want to get sunburnt, so I wear my SPF hat. But otherwise, I’m just rocking the baldness.

This week the cycle starts all over again, with carboplatin and paclitaxel. My doctor is convinced it was the carboplatin that gutted me out and made me need the transfusion, and he suggested lowering the dose of carboplatin. My reaction was “THE FUCK YOU WILL.” (Literally, that’s what I wrote back to him.) Because I want to gut out as much of the cancer as I can, and I don’t mind feeling like shit and getting transfusions if it means I can get to having no evidence of disease. 

Is chemo fun? No. But, it’s a necessary evil. It’s what I hope will buy me enough time to see The Girl start kindergarten in 2017, which is the most important goal for me at this point. I’ve got just over 2 years until then, which would put me about 4 1/2 years from diagnosis–longer than the average livespan for someone with mets. That’s why I want to be aggressive with my treatments. I know it’s hard for the people around me to see me go through chemo, but I’ve told them they need to grow a thicker skin, because this is important to me. 

Someday I hope there will be better treatments for people with cancer. Someday I hope we’ll look back on the chemo era as positively medieval compared to the new treatments to come. Unfortunately, that day looks to be a long way off, because we aren’t spending enough on cancer research, especially research into metastasis. I encourage all of you who don’t want to see me and other cancer patients suffer through chemotherpy to donate to research-oriented chartities like Metavivor.