Treatment #3 in the books…and more on the subject of hair

It’s another War & Peace length post…thanks for hanging in there with the reading – I’ve been amazed at how therapeutic writing these has been for me – thank you for reading them!

When we last left things (I feel like the recap on a TV show…haha) we were waiting for insurance approval on the injection to increase my white blood cell count/neutrophils.

It took nearly exactly 5 days to receive this approval. 3 business days, 2 weekend days. Unreal. When the approval came through Monday afternoon, the nurse said, well, we think your body may have already recovered, so we want you to go get a CBC before we give you the injection. So I did, like within 15 minutes of this phone call, go get a CBC blood test. 

One of the neatest things about this process is how it is all electronically integrated. I got my blood test at about 1530 on Monday, by 0530 on Tuesday morning I could see the results in my City of Hope app on the phone; I was back in the “green” zone for the parameters I thought were important. (Not that I’m actually technically qualified to read these, but I can interpret data and there’s a nice little green bar on the results image…)  (I have identified the next set of spreadsheets and plots I’m building – blood test results vs. time!  Also going to turn my symptom tracker into some data in a spreadsheet too…probably going to exceed my MSExcel plotting ability so this will be interesting – I’ll get to learn something new! If only I could get them to export a .csv so I didn’t have to manually re-enter the data.  Sigh.)

It took a little more time to get things confirmed with the team at City of Hope that I didn’t need the injection and could have chemo treatment on Thursday and get it scheduled. However, we did it, and I had treatment #3 today, which is great, and I am grateful.  This means I am 1/4 done with the first 12 weeks of treatment.  Woohoo…that feels good even if I’m very conscious of a lot more to go.  (1/8th done with chemo/immunotherapy pre-surgery?).  It’s definitely wonderful progress and I am relieved to be moving again.  

What’s next?  Well, Monday I go for bloodwork, and Tuesday morning I’ll check it, and depending on what it says I’ll either need to be on the phone requesting a shot to pump up my neutrophils/white blood cells, or I’ll already be good for treatment on Thursday.  (The nurse highlighted the values and told me the goal numbers…so I’m smarter than I was before…) They do check this, but I think I’m a bit faster, and probably more persistent, but as in many things, I am sometimes my best advocate.  🙂  (My chemo nurse thinks I won’t need it this week, but likely will next week…her thought is that it was the Carboplatin that did it and I didn’t have Carboplatin this week.)

I still feel very good physically and we’ll see how this current round goes over the next few days.  (So grateful!)

Next week is a new chemo cycle so I get all 3 meds again.   It will be a bit of a harder weekend, however, it will also be a holiday weekend so that will be nice to have the extra time if I need it easily.  (I am very lucky, I can can take the extra time off if I need/want to other times as well.)

It was mentally nice to have a weekend “off” from chemo effects. I cooked a bit, which enables one of my favorite activities – eating good food.  I made some lovely pan con tomato from the Jose Andrés Tapas cookbook and a sausage pasta recipe with some locally made fresh pasta from HerCanberra.com which I’ve been meaning to make for months. (BTW, HerCanberra.com is a fabulous website, highly recommend even if you don’t live in Canberra and if you don’t know about Jose Andrés you should, he’s amazing, I’m still heart broken that the The Bazaar closed.) The food I made was yummy and it was lovely to feel good enough to cook a couple things and eat and taste everything.

I’ve also finally dipped my toe into the water for support resources from Cancer Support Community (CSC) of the South Bay. I’m not ready for a support group yet, but I think I will be at some point in the future. So, I picked a “class” that I think can inform our overall strategy for beating cancer on Integrative Medicine. Basically, this was about how do you, support your recovery via diet, exercise, sleep, supplements, mental health support etc.. It was really interesting and was given by a Naturopathic Doctor (ND) who specializes in cancer.  What I particularly liked is that all of her recommendations are backed up by scientific research based mainly in peer reviewed papers. (I didn’t know that there were NDs, so I am going to research that too…) I’m likely going to explore this more for a wholistic approach, which I think is very important. However, to be clear, I’m not doing anything that my oncologist doesn’t support and will run everything by her first. That’s one of the things that I thought was neat about this, this ND really emphasized that the “traditional” care is critical, and what she does is to supplement and increase the effectiveness of that care and help the patient do better with side effects. Overall, really interesting.   The seminar was free through CSC and easy because it was Zoom with no camera while I sat on the couch and ate dinner.

I am also doing a sound bath virtual “class” on Saturday morning. Some of you may find this a little odd, but a wonderful provider I saw a few years ago for something else had a table you laid on and it had built in speakers.   At the beginner of her treatment she had me lay there on this table and she played some music and humpback whale sounds.  It was a sound and vibration bath. It was incredibly calming. Un-real stress relief. I wasn’t able to keep seeing her on a regular basis, but when I saw the opportunity for a sound bath via CSC I was like, I am going to try this!  It won’t have the same vibration effect as that table because we don’t have any speakers that are that big and I doubt you’d have the frequency (is it frequency? Or is the power behind the frequency? Or both?  Not sure…) range via an internet broadcast but I’m going to see how it goes. I am excited to try it and see.

Back to the subject of hair. Well, it’s officially thin. On Sunday, I lost enough hair that I decided it was time to wear a chemo cap in public at work. I was a little afraid to take it off to see how much hair had come out when I got home Monday night. However, Monday & Tuesday, at the beginning and end of the day before I put the cap on and when I took it off, I’d go to a patch of grass somewhere in the yard and lean over and run my fingers through my hair to get what was already disconnected from my scalp off of it.  I’m hoping some birds and small animals used it for nest material -that’s one of the reasons I did it outside! It didn’t really look thin until Wednesday.  But, it’s officially thin now.  I suspect there won’t be anything left by Monday.  I’ve been surprised at how gradual it has been.  I was expecting something a bit more binary – maybe if I’d had chemo last week it would have been…who knows.

One of the things I should have been prepared for (because the nurses told me) was that my scalp is really sensitive and a bit upset.  It itches.  It’s also quite tender. (Mike and I have talked about it maybe feeling a bit “attacked”…which in a sense it is…by the chemo.)  Even the softest chemo caps feel like they put pressure on things and moving my head around on the pillow isn’t awesome.  None of the pain is terrible, but it’s uncomfortable.  When I get home, I can’t wait to take those chemo caps off because the most comfortable part is not wearing any head covering at all right now.  

I test drove not wearing a cap to chemo today.  This was relatively low stakes of course, the team at City of Hope sees people with hair in all states all the time I am sure.  A friend drove me, I knew I’d be comfortable with her.  Not sure how I feel about the rest of the world yet.  (And to be clear, it’s not really the rest of the world judging me, the battle is all in my head and how I feel about it…) So, we’ll see.  The chemo nurse today told me that this uncomfortable-ness might be for another few weeks, through the next cycle.  A friend remembered it only being a week or so for her – I hope she’s right and my experience will mirror hers here.

The other part I wasn’t really prepared for is how messy it is. (Which now seems like it should have been fairly obvious…)  I have so much hair even if it’s really straight and flat, and it is EVERYWHERE.  (That was the 1st motivation for wearing the caps, containment…it wasn’t until Wednesday where it was also appearance.) This part is not a big deal really, we have multiple vacuums, but interesting from an objective standpoint – less fun from the subjective standpoint when that seemingly massive pile of hair on the shower floor came from my head.  

I also have to say…THANK YOU to my friends who have had cancer and recommended I cut my hair short before it fell out.  That was the best advice and it has helped mentally immensely.  I already did “hair difficult part 1: big hair change but with hair” with the haircut and so now “hair difficult part 2: hair departing scalp” is much easier because the volume is less…that pile on the shower floor and the clumps outside are so much smaller than they would have been.  It’s still weird, I’m really unsure how I feel about it, and I haven’t been able to identify the feelings yet, but it has to be so much easier with less volume.

 As always, we both continue to be so grateful for your thoughts, support, suggestions, comments, prayers, rides, meals, and just everything…we are so grateful for you…thank you!

New note I’ll be putting at the end of posts for website navigation help:

Thank you for taking time to keep up with us and see how we’re doing as well as all the help!  Because, I think like me, much of the world does nearly everything on their phones…I’m going to add this note to the end of posts to make website navigation easier.  If you’d like to read other journal entries, please click here (oldest post is at the bottom of the page).  There’s also a “hamburger” menu in the top right of the webpage that can help you navigate between the journal, ways to help page, stay in touch, and welcome pages.   Please know that reading this page and thinking of us is help!   Thank you for your support in all forms!