Weekly Update #47

Last week was a rotten allergy week for me – I was congested and my throat hurt and I was worn down. And I had a hard time with that. Allergies seem like not that big a deal compared to the rest of my health history, so in my mind it seems like I should be able to blow right through them. Being slowed down by mucus was frustrating and humbling. It’s amazing how hard it is to listen to your body over your brain.

My port replacement procedure is scheduled for later this week. I am looking forward to getting that finished and moving on with port number three. Makes me very glad I don’t have treatment this week so I don’t have to get it through an IV again. It’s not comfortable to hold your arm straight for 4 hours. My next treatment I am looking forward to my regular chemo nurse being able to access my port without having to call in reinforcements.

I am looking forward to an extra week off from treatment this week. I am hoping to knock out some sewing and indulge in some reading. I have stacks of fabric and books waiting for some love, and this week I should have a chance to indulge.

Weekly Update #46

I’m not going to bury the lede here – my scan results came in last week and they were good! Yet again my tumors are stable or smaller in size and there’s no new cancer. I get to stay on this regimen that is working for my cancer and my life until our next reevaluation around Thanksgiving.

Yet again getting the results was such a starkly positive contrast to my previous experiences. My doctor said she could see that I was stressed when she walked in the room and could call me with scan results as soon as they have them. I decided to stick with what we do now, which is meet right after the big team of lots of specialists chats about my case. I’d rather know the results and the plan at once. I really appreciated that they want to minimize scanxiety as much as possible, though. My doctor also noticed that I was scheduled to get my next treatment the week before my birthday and offered to push it out a week. Those little details are the things that make me feel so taken care of as a patient.

The less fun news is a follow-up to my port. I had a dye study done and it confirmed what we suspected – the port is broken and will need to be replaced. I’m waiting on that procedure to be scheduled and am glad to have that extra week before we need to use it at my next chemo. I am also a little bummed about the port replacement because it means I can’t come off my blood thinner shots yet – I had gotten the go-ahead but now I have to wait until after the replacement to switch to an oral blood thinner. Soon my poor stomach will be free of bruises.

I’ve started my meditation course and as I feared/expected, it is going to be intense for me. I am doing the course because I want to confront the intense feelings I so deftly ignore, but looking hard stuff in the face is tough. My teacher and I talked about it in advance and I’m prepared for lots of self-care to get me through it, and using the skills I already have of knowing what is and isn’t safe for me to confront at any given point.

Now that the school year has started I am putting a lot of my extra energy into my daughter’s school and I am really enjoying it. I’m volunteering at the library a couple times a week and am going to do some tasks for her teacher when she needs an extra hand. Being sick means I cannot always show up for my daughter in the ways she wants, and it feels like the time at her school is helping her feel better about me being there when I can.

Weekly Update #45

I’m back at the updates and my chemo – I write this from my infusion suite recliner. It is turning out to be kind of a bummer here. My port isn’t functioning correctly, so I have to get today’s infusion via an IV in my arm. Not super comfy for 4 hours. And also I will need to follow up and do a dye test to see if the port is broken like we suspect. If so, that means removing and replacing it. The silver lining is that this port has caused problems almost the entire two years I have had it, so maybe a new one would work better.

Last week I got to take a week off from chemo and visit Scotland to see friends get married. It was incredible to get to go on a trip like that. When we booked it we didn’t know what kind of shape I would be in when travel came, and it was a delight that my energy levels weren’t the limiting factor in our adventures. I was bummed, though, on day 6 when I was really tired out. We walked up about 13 flights of stairs and my husband and daughter were find by the end, while I was worried that I might throw up or have an unhealthy heart rhythm. And later that day we had to run for a bus and I simply couldn’t do it. I was really upset in the moment – it felt like a punch in the kidney reminding me that I have been working out and am feeling better, but I am still a sick, disabled person. I can look at the evidence and see that we were incredibly active the whole trip and I did things I couldn’t have done 6 months ago, but I still feel the disappointment in my heart. I was lucky that the next day was our train ride from Scotland to England. Looking at the sea out one window and fields of sheep out the other filled up my soul so much.

Friday was scan day for me. I am still so appreciating how much easier to have them in town. It was just a part of my day and I felt much less stressed about it than the ones at MD Anderson. The tech really went out of her way to make it so I didn’t have to go get a second needle stick for my blood work that day. I have heard that my blood marker numbers look good, and I’ll get the official scan results and plan for the next couple months on Thursday.

Now it’s time for my benadryl-induced nap. I’m hoping all the sleeping I’ll do the next few days will help me get over the last of my jet lag.

Weekly Update #44

One of the things that is hard about continuous chemo is that even though I get the same treatment every 14 days, my body responds a little differently every time. I feel like I should be a professional at this regimen after 9 doses, but there are new challenges to address nearly every time. This round brought with it new levels of skin dryness – no matter what I did my entire face had the ghostly glow of dead skin sitting above the surface. My appendages have started to be hit, too, with little red patches on my arms and legs as well as continuing foot damage. I have been leaning hard on my lanolin creams and it seems to finally be getting better.

I am mildly allergic to both the cleanser they use to prep my skin for accessing my port and the adhesive they use to hold the port needle in place. I normally expose myself to the allergens rather than remembering to stop the nurse in time, but this time around my skin really reacted poorly. The nurse wrote it in big letters in my chart to avoid these next time and go with the supplies I’m not allergic to.

The other way this cycle was rough was overdoing the carbonated drinks. Plain water is tough to drink in the first couple of days post-treatment, so I mix it up with sparkling water. It was too much for my digestive system and I made myself sick. I felt so foolish for messing this up, I should have known that chemo makes my intestines more sensitive, I should have been able to drink more still water. I am trying to chalk it up as a lesson learned and be gentle with myself for not predicting this outcome.

We’re already talking about my next scan, which will hopefully be at the end of next week. Talking about scheduling the scan made me realize part of why exercising has been so important to me lately. When I work out I feel like cancer is not the entirety of my life. I have other things beyond it to focus my time and energy on. Putting a scan on the calendar feels like it reduces me to just a cancer patient. I am enjoying having cancer be a smaller part of my time and am going to work hard to maintain this balance.