bald – Just another day

So, yeah, haven’t been good about keeping up with the blog or a few other things, but I’m on an upswing now, so let’s try to document some of this.

Cycle 9 – started July 6th

I was well into Cycle 9 when I posted about the last cycle, so the the henna pics was from cycle 9. This was the cycle where I stopped taking Oxaliplatin, like the doctor suggested in cycle 8. This makes the whole process a lot easier. It means I don’t get one of the “pre-meds”, cutting 20 mins out of my appointment (benadryl – which makes me sleepy). I only get one main med at my Wed appointment before the poison pack.

It means that the cold sensitivity is gone. I can touch metal now. I can EAT and DRINK cold things. No more room temp sodas and I can have ICE CREAM and my favorite frozen juice pops.

Cycle 10 – Started July 27th

Most of the time, I get a private room for my main treatment day. In fact, for the first 8 cycles, it was always the SAME room. This time, they were really full, so I got put in the common room that has about 6 treatment chairs.

Chandra did a second henna pattern this cycle. The henna we used was from a different source and I think it was bad. It got dark fast, but didn’t act normal and washed off too fast. So Chandra showed off her skills and refreshed it during my treatment. All the nurses and my doctor had to come over to see.

The weekend after I had treatment, my roommate’s son came to stay for an overnight trip. He was visiting his aunt in the metro area, so spending a day here was good for both my roommate and his son. I took this pic at breakfast the next morning. It was nice to see Roomie looking so happy.

The next weekend, I got to see a friend that lives in Reno for a couple of hours. We went to Ettore’s, a local bakery & cafe. Yum!

Cycle 11 – started Aug 10th

This cycle, my usual oncologist was on vacation, so I saw a different one. She was amazed at my energy and that I was still working. I asked when they’d want to take out the port in my chest and she’s leaving that up to my usual oncologist.

The only major change this cycle is that for the first time, the neuropathy caused by the Oxaliplatin is worse than it was while I was taking the med. I’ve done some research and this isn’t that unusual, but it’s still annoying. This past week, my feet hurt so often, I’ve been going a little crazy.

I had a massage today. My usual massage therapist usually does my feet. Today I told him that I wasn’t sure if a massage would hurt or help my feet. He suggested doing light pressure and letting me decide if he should continue. He was very light, but when he was done, my feet felt better. Not fantastic or normal, but a lot better. So, yay, massage!

And a third Henna Head pattern (you can see the cable of my “poison pack” attached to my port in a couple pics):

I’m letting the hair start to grow back now, so no more henna head. I got a lot of complements on it for the whole time I’ve been doing it, especially my daughter’s lovely artwork!

During this cycle, I found out that the small company I used to work for in various roles for several years went out of business. That’s very sad for all the people that kept working there because they believed in what the company was doing. I feel bad for the founder of the company. She put many years and all her energy into building that business and now it’s gone. 😦

But it also makes it clear that it was right for me to leave. I’m so thankful for having a federal job right now, for the lovely women at the Women Veterans Alliance and Women Vets Connect for encouraging me to apply for something different, and for the people at my current job that have been so supportive.

I went to lunch with a couple of other people that used to work there. The young pregnant woman is normally a very tiny thing, very slender. Seeing her with a belly is just so adorable!

My 12th and LAST chemo treatment is on this coming Wed, August 24th. I really am ready for food to taste NORMAL again.

I’m a little later posting this than I intended to be, about a week later.

Cycle 8 started on June 29th.

We kept the oxaliplatin at a lower dose that cycle and the doc discussed stopping it for cycle 9. He continues to say I’m doing really well, much better than most through the process. We still haven’t had to delay any treatments or talk about stopping. He’s amazed I’m still working.

My hair thinning was getting sort of ridiculous. The last time I tried to dye it, I still had a lot of red on the hair and tried to do a turquoise color on top of it. It mixed with the red and made a nice dark purple, but my SCALP was turquoise.

That was it. I decided it was time to go bald.

I went to a hairdresser to have it done (even though roomie had been begging to let him do it for ages). It was nice. They did a scalp massage, hot towel treatment, she used clippers on the shortest setting. I probably could have left it like that, but part of the plan was for Chandra (my daughter) to do henna patterns on my bald head, so she the hairdresser then went over it with a straight razor. She was very careful, no nicks or anything. It was a good experience. I felt pampered.

I posted the above pic on Facebook, and people commented that I was “bad ass” or “brave”. It didn’t feel that way to me. It felt like this was just the next step in the process and I might as well embrace it instead of fight it.

The next day, Chandra did the henna. I showed her 5 or 6 images of other bald henna heads that I liked, discussed what I liked about each of them and then just let her have it. She combined elements from different patterns and did some of her own thing. I think it turned out awesome.

These little things make me feel good emotionally. But this still isn’t an easy process. It seems, based on things I’ve read and people I’ve talked to, that in some ways, my road has been a bit easier than most other people’s. I can eat most of the time. I’m maintaining my weight (in general, I still need to lose, but during chemo, the docs prefer if you maintain). I am able to keep working most of the time.

But I also feel really weak and tired. If I wasn’t working, I’d probably be sleeping more than 12 hours a day. When I went for a short walk around the apartment complex (to catch Pokemon, of course!) I had to sit and rest several times. I did a big grocery trip for the first time in weeks, and by the time I was at the checkout, I was shaking and had to actually accept help out to the car with my bags (which I never do). I HATE being weak (especially when the compliment I get the most is about my mental/emotional strength. I like to try to match my physical strength to the perceived emotional strength – if that makes any sense).

I’m not the best housekeeper in the best of times. I’m grateful that roomie has taken on most of the domestic duties recently, especially the laundry (the laundry room is a longer walk across the complex now in our new apartment). Don’t know what I’d do without that help (maybe bribe my kid to come over and help sometimes?) I can’t carry the laundry. I can’t take the full trash bags out. I can’t stand up long enough to clean the kitchen in one go.

The way my treatment works is that on Wed of treatment week, I get medication over a couple of hours. Then I take one medication home with me in a fanny pack, attached to my port. Friday, I go back in and they unhook the fanny pack from my port. At this point, I’ve got the maximum poison in my system. Also at this point, I start to feel really listless and sick. I still haven’t actually vomited since cycle 2 (which I think is AMAZING), but I get this particular . . . bile taste in my mouth/throat. It’s very specific. It’s different than other times I’ve been sick (pre-chemo), even different from the green bile I vomited when my gall bladder rebelled. I tend to think of it as “chemo-sick” rather than simply “sick”. And I get gassy, burping more than ever before in my life.

This is better than many people have it. I know this. But it’s still not easy.