Category: Cancer Posts

On Monday April 6th I was given two different kinds of chemotherapy, Oxaliplatin by intravenous IV and Capecitabine as a two-week set of pills. I was also given a suite of supporting drugs (anti-nausea, etc.). I reacted badly to something, so after one week my doctor had me stop. Meanwhile, I still had the second week of chemo pills to take. So after a week of recuperation, I’m going to take my second week of chemo pills starting on Monday.

I’m pretty sure that my bad reaction was due to a steroid (Dexamethasone), that was given as part of the IV infusion. The purpose of the steroid was to keep me from having an allergic reaction to the Oxaliplatin.

Meanwhile, I expect to do ok with just the Capecitabine pills. And by “ok” I mean I think I will barely somehow manage to get through it. It won’t be fun. The Capecitabine makes me extremely nauseous. And I don’t think I react to the anti-nausea meds very well. So I fully expect to be puking all week next week.

But at least, with only one kind of chemo med, it should go better than the first week when I was on both kinds of chemo at once. That was a disaster.

Thank you for the emails, calls and texts. Sorry I haven’t replied to anyone in a week. I still appreciate you reaching out.

It’s been a rough week. I started chemo a week ago on Monday. I’ve had a lot of pain and nausea, as well as a variety of other difficult symptoms, including depression. I’ve been mostly laying in bed, crying and puking for a week.

I had a follow-up visit with my doctor this morning. She’s concerned about how poorly I’m tolerating the treatments and has decided to take me off the daily pills for two weeks (and the side effects of the IV drug I got a week ago Monday are starting to wear off). So I’ll have two weeks off and we’ll re-evaluate.

I expect to feel a lot better soon.

On Sunday I wrote a draft blog post called “Starting Chemo Tomorrow” but then I forgot to publish it. So now the update is: I started chemo yesterday.

Last week we had a video chat with my new doctor. Then yesterday I went into the cancer center to have blood work done, have a physical, and get my first IV chemo treatment. This is the first time I’ve had a doctor do a physical exam and look at my incisions since I was released from the hospital over a month ago (actually my sister, who is a doctor, kept a good eye on me when I was still living with her in Boston) but this was my first official in-person physical exam. Everything seems to be healing up fine from the surgery, it’s just really slow.

In addition to the physical exam, I had blood work done. The blood work looked really good – my white blood cell count was higher than it has been in months and is well into the normal range now. The chemo is fairly likely to temporarily lower my white blood cell count as a side effect of killing any remaining cancer cells, so my white blood cell count will be checked again next week.

I got my first IV dose of chemo, which was difficult. I have issues with my veins so I didn’t tolerate the IV process itself at all well, and will need to talk with my doctor more about that before next time.

I also was given chemo pills to take daily for the next two weeks. That’s a second type of drug, different than the one given by IV. I’m taking two different kinds of chemo, plus in the IV I also got a steroid and and a 48-hour anti-nausea drug (and I have pills for when that wears off). After two weeks of taking the pill form of chemo, I’ll get a week off, then will do the whole thing over again 3 times, for a total of 4 rounds over a 12 week period.

I also have a CT scan scheduled for Wednesday, which will be the baseline, and we’ll use it to watch for any changes during and after the chemo treatment.

My appointment lasted from 9 AM to about 2 PM and all went fine except the IV was a nightmare. The IV part of the appointment took about 3 hours total, including a long time in the waiting room as well as initial struggles to get the IV inserted, and some problems with it even after the drip started. The drip itself lasted about 1 1/2 to 2 hours, most of which was at least somewhat painful and some of which was very painful (that’s not typical, like I mentioned, I’ve had IV issues before and it has to do with my veins). Even getting the IV back out was super painful, and my arm is still very sore and bruised today.

I overheard a nurse grumping that I should have been given a port. But they don’t usually do an intravenous port for someone who only needs an IV four times. Ports are usually for people who have 6 months or more of treatment, or have to get drugs intravenously over a period of several days at home. And right now, with the coronavirus, it’s not really a good idea to do anything more invasive than necessary.

Speaking of the virus, the cancer center is no longer allowing anyone to accompany the patients into the building. So it was doubly hard to not have John there. We called each other on our cell phones, and we left the line open for the entire 5 hours so he could hear what was going on and we could talk when we wanted. Luckily I was able to plug my phone in during the IV process, because I have an old phone and not that much battery!

I felt bad for John having to hear me moan and cry during the issues with the IV line, without being able to be there. He has really been through a lot supporting me with this. I tried to be as stoic and quiet as I could because it was an open room with probably about 30 other patients getting their IV’s, with nothing to do except listen to me cry, and I don’t like to be the center of attention and making everyone else miserable. But there were at least two different times when I was nearly out of my mind with pain. It’s all bruised now and I had to take tylenol to even be willing to move my arm when I got home. This morning it’s still sore, but at least I can type!

I never blogged any details about the days in the hospital after my surgery, because I don’t like to think about it. But I did have IV issues during that time as well, so yesterday’s issues weren’t just due to a random bad insertion or anything.

The cancer center was doing their best to protect us from coronavirus exposure. We were stopped at the door, anyone who was not a patient was turned away. Patients had their temperature taken, and if it was normal, allowed to enter the building.

The receptionists wore hand-sewn masks, likely donated by the local community. The nurses and doctors only had standard paper masks (not N95). There was a small bottle of hand sanitizer sitting out in the area where we were getting our IV treatments, but there was none anywhere else, and I overheard the nurses say that the hand sanitizer is expected to run out in 4 days and they were not expecting a new shipment for 4-6 weeks. Someone was going around wiping down the waiting room chairs using what appeared to be hand-mixed disinfectant in an unmarked spray bottle, which she sprayed onto a cloth.

Everyone was mostly seated 6 feet apart. Many of the patients came in wearing various types of handmade masks, dust masks, or cloth tied around their face. Many also wore latex gloves. I wore gloves and a buff (like an extra-wide headband) around my mouth and nose, but it kept slipping down. John wears a dust mask when he goes out, but the dust mask doesn’t fit me well, with large gaps around it, and I don’t think it does much good.

This morning my friends said they would make me a cloth mask today, which I really appreciate. John also said he would make me one, but he has so many other things he’s doing for me, plus trying to keep up with his job. I know how to sew, but close-up work like sewing is currently causing nausea. (Luckily I can still type on the computer and read my kindle. Yay for large font!)

I don’t think New Mexicans in general are being very good about wearing masks. I actually don’t know what they’re doing in the grocery stores and other indoor places because the cancer center is the only place I’ve gone since arriving home more than two weeks ago. And I’m sure that cancer patients are being a lot more careful than the average person. I do know that most people I see taking walks in the neighborhood aren’t wearing masks. They are relying on social distancing.

A friend told me that he got dirty looks when he wore a mask to a pharmacy, and I just couldn’t even understand that. Why would people resent other people trying to be helpful? Masks are most effective for keeping asymptomatic people from unknowingly infecting others. So it seems to me that wearing a mask would be one of the most considerate things you could do for your neighbors. We should all be thanking those who are going to the trouble of wearing a mask.

Our neighborhood recently had an outdoor gathering. We all got a notice on our doorstep inviting us to come out at a set time and wave from a distance. That’s me in the center of the picture.

At first people really kept their distance, but then they started drifting in as they were conversing. No one was wearing a mask. We weren’t either; this was before we heard we should be wearing masks outside as well as indoors in public. Now that I’ve started chemo I’m going to wear a mask on my walks, and I’ll also probably quit attending the weekly neighborhood greeting altogether.