Pyramids

Wow, four months since I last posted here. No news is good news, right?

I saw the oncologist in April. He echoed nearly verbatim my thoughts about chemo: that stopping now just because the insurance won’t pay vs. having clinical data over a year showing good response with reduced administration isn’t the wisest course of action. So… we decided I would go back on the Velcade once a month starting in May. IF the neuropathy starts, then he’ll request Kyprolis again from my insurance.  But I will continue to use the ice booties and gloves and continue taking the alpha lipoic acid (I increased my dose to 1000 mg a day) so hopefully neuropathy won’t be an issue.

Two days later I saw my endocrinologist. She is really mad about my being forced back on the Velcade, “which we already KNOW is toxic for you.” She strongly encouraged me to write a letter of appeal to the NM Office of the Superintendent of Insurance. I said I would consider it. I get so tired of having to battle for everything, especially when I don’t feel like I’m asking for too much. Is it unreasonable to stay on a medication that was working without debilitating side effects?? A medication they’ve approved for three and a half years? It’s just so stupid.

Endocrinology-wise, all is well. We’re gradually increasing the dose of the Mounjaro. My blood sugar is great! The sensor I wear estimates A1Cs, and mine is usually around 5.4 – 5.6, which is exactly where it should be.  For my patients with diabetes, I look at their A1Cs since high blood sugar can contribute to hearing loss. I’m amazed that I see so many who are over 12, over 14. Yikes. And a lot of them haven’t followed up with their PCPs. When I can, I get them scheduled.

In early May I had a mammogram, which was normal. A few days later, I received a call from Lovelace asking if I’d like to meet with a PA who is tracking women who are at higher than normal risk for breast cancer. Sure! Sign me up. I got an appointment in July.

Because of my mother’s history and my own previous history with cancer, I’ve known I was at higher risk. I’d had genetic testing done in 2019 which identified a “variant of unknown significance” for the BRCA2 gene mutation.  I didn’t know what this new appointment would entail but whatever I can do to either reduce my risk or at least get identified sooner rather than later, I’m all for it.

They sent me a very lengthy questionnaire by email that covered a lot of my family history of cancer and other diseases. Not much known cancer though, aside from my mom’s history and a paternal uncle who died of lung and brain cancer. It’s always interesting filling those things out because I don’t know much about my extended family and their history.

I started back on chemo May 7^th.  Since my last visit in January, one of the nurses had retired. She was really nice (well, they’re all very nice). She had an amazing memory. I could say one inconsequential detail about my incredibly boring life or my work schedule, and she would remember it months later. She herself had had cancer and had a difficult recovery. That’s what led her into oncology care.

After they took my vitals and such, I started going through my routine of taking my shoes off and putting the ice booties on. The nurse said, “Oh you don’t have to do that. Velcade is just a shot, not an infusion, remember?”

NO. I literally had NO recollection of that! It had been so long it completely slipped my mind! However, I did remember later because they would note in the EHR which side of my pasty white stomach they administered it to, so the next time the opposite side would be used. It hurts, like a sting and burning sensation, but it’s very tolerable. And fast! Instead of what turns into a thirty minute butt-in-chair appointment between the pre- and post-saline and the infusion, this is a 30 second shot!

But… how was I going to use my ice booties and gloves then if I wasn’t going to be there long enough to wear them? Since I KNOW this medication causes me neuropathy, I don’t feel like I can skip this. Well, after leaving that appointment, I was heading up to Colorado for clinic the next day. Yep, I just put them on in the car and wore them for a while as I drove. So if you see someone driving with what looks like blue oven mitts on her hands, give a wave. It’s probably me. 

When I was checking in for my chemo appointment, I happened to run into my oncologist. I asked him what he thought about my writing a letter of appeal. He said he thought I should do it. “It just pisses me off,” he said. Yep. Me too. He also said, “Not a lot of people can take this on, but you can.”  I was glad he had confidence that I could fight them.

So I crafted my letter, and with the help of my friend ChatGPT, I think it was compelling. But then it dawned on me: I don’t have state insurance, I have federal insurance. Would that make a difference? Per ChatGPT, it surely would. The state of New Mexico has no jurisdiction over federal plans. I would need to submit the letter to OPM. That seemed like a losing proposition. They had a significant reduction in force AND they have a 90-day deadline for appeals. And at that point, I was about a month too late. The big guys win again. Oh well.

In June I saw the dermatologist for a follow up on my scalp issue. I know I said this before, but he is so nice. I’m still masking (five years of chemo = no immune system), and as soon as he popped in and saw I was wearing a mask, he stepped back out and put one on too. I never ask people to do that, but I’m surprised with how many people offer to do so when they see I’m wearing one. But that’s not the only reason he’s nice. He’s just a nice man, soft spoken, explains things well, and spends a good amount of time with me.

I asked him if he knew I had LPP when he first saw my scalp. He said yes, he definitely suspected it, but wanted the biopsy to confirm. I think he thought I was balking at having paid for a biopsy that maybe wasn’t needed but I surely wasn’t. I was happy to have a definitive answer so we could come up with a plan.

He examined my scalp again and said he was already seeing improvement: no new hair growth but no more “plugs” on my scalp, where before he said it was covered in them. He explained that plugs form from tissue that grows around the root of the hair follicle, leading to scarring and permanent hair loss.  We will carry on with the same topical treatment.

The first topical stuff he prescribed was 30 grams, which is not a lot, considering I had to use it twice a day over my entire scalp. It was only going to last me a little over a week. I was able to get a larger amount, 120 grams, which lasts about a month. Of course it’s more expensive at the outset ($95 vs. $50), but in the long run, obviously it’s cheaper (more adjustments to my budget!). It’s about the consistency of lotion. I don’t think it’s noticeable once it’s rubbed into my scalp pretty well, but then again I don’t look at my hair that much so who knows. It does make my hair even more unruly than it normally is. And of course hats now are part of my existence when I’m outside in the sun. Joy.

I’ll follow up with the dermatologist in September.

I may have said this before, but since there is a Facebook group for just about everything, I joined the one for LPP.  Oh my lord the routines people go through to try to save their hair! I get it, to a degree. I mean I don’t want to go bald. But the potions and routines and creams and salves and drops and diets and specific food avoidance…there’s just no way. First of all, the added time and expense to do all those things must be insane. Second of all, like I said before, how does one go to work (or school or whatever) with all that crap in their hair?? I wash mine now about every other day, and with just the stuff I’m putting on my scalp, it just feels gross.

I’m using the shampoo he recommended, another shampoo that supposedly promotes hair growth (I use both, one after the other), the topical stuff I put on twice a day, the ‘deep conditioner’ that he recommended, used when I know I’m going to wash my hair (man, that stuff smells SO good!!), and the infrared light thing, which I use several time a week. I bought another one I take with me when I travel for work so I don’t have to remember to throw it in the car. The cool thing is that it has a USB plug so I can use it while I’m driving. (Oven mitts AND a space helmet?? NICE. Actually, the one I use in the car just looks like a baseball cap. With a cord.)

So like I said, sure, I don’t want to lose my hair, but the other side effects of LPP seem so much worse: itching scalp, burning scalp, red raised patches (reminds me of psoriasis, if you’ve ever seen that), very sensitive skin. People post about non-stop itching no matter what they try, even including steroid shots in the scalp. Good god. That sounds so fucking miserable. So far I have had NO issues like that. Maybe this topical stuff will keep that at bay.

Someone in the FB group posted pictures of their scalp, and of course everyone wanted to know how they took the pictures. She posted a link to a USB “microscope camera,” and I’m sure Amazon had a run on them that day, including me. I do have red patches on my scalp, but given the magnification on the camera, I think they are pretty small.

One day in June I had four appointments. This is my life. Since I have so few days off from work, the time I do have off is usually filled with doctor’s appointments.

I was out of refills on one of my meds so I needed to see my PCP but he couldn’t see me for a number of months. I told the receptionist on the phone that it wasn’t a big deal, I would ask one of my other providers to prescribe it for me, since I see them all the time (I was thinking either my oncologist or my endocrinologist, either of whom I knew would have no problem submitting the prescription).  I don’t know if the woman on the phone didn’t quite understand what I was saying, but she immediately got really snippy with me, saying, “So you don’t want to see Dr. X anymore?” “No, that’s not what I’m saying,” and I explained it to her again. She still acted as though I personally offended her, and we ended the call.

A few short minutes later, someone from his office called, stating I would need to make an appointment with him before they could renew my prescription. I relayed the previous conversation, adding that I wasn’t trying to insult anyone, I just needed to get the prescription filled. She apologized for the other woman’s response and said she could get me scheduled with a nurse practitioner in my primary care doc’s office. Boom. Done. Not sure why that wasn’t offered the first time.

I saw the NP for the refill and also asked for a referral for blood work for autoimmune disease. I explained that both my mother, maternal aunt, and father had autoimmune diseases, I had this weird scalp thing, and I had a suspicion of possible rheumatoid arthritis in my hands due to weird joint stuff I had noticed. She agreed to submit the lab work and also put in a referral for x-rays of my hands. I was able to get both of those done the same day. Luckily the x-rays showed just regular old osteoarthritis, not rheumatoid, and the bloodwork was negative for autoimmune disorders. (Initial testing is more like a screening for inflammation. If it’s positive, I believe they do more targeted blood work.) So overall that was good news.

(My fourth appointment that day was for an uneventful dental cleaning. But uneventful is definitely what I strive for at the dentist.)

I saw the oncologist again in July. I explained why I didn’t follow through with the letter of appeal, which he fully understood. He recommended to keep on with the alpha lipoic acid and ice booties, and to let him know immediately if I start getting any symptoms of neuropathy again. (I still have it very slightly, but I am definitely familiar with how it feels when it gets worse. There’s no mistaking it.) We confirmed the plan of monthly administration of Velcade through next May, and then… we stop. He said I will then need to have monthly blood work done to monitor my creatinine and continue with periodic 24-hour urine tests. No problem.

And then he asked me, “What if you beat this?”

As miraculous as that may be, I hate to even entertain the idea in the event that doesn’t happen. I’ve been living with this now for over six years since I first had symptoms. It’s just a part of my life. I would love for it to NOT be a part of my life, but I don’t want to get my hopes up. One day at a time. (Even though it’s very exciting to think about.)

I asked him what his retirement plans are (I need to know these things!). He said, “Well, I went to Mexico recently and climbed a pyramid. I’ve always wanted to do that. And I had an epiphany.”

Oh no, I thought. He’s going to retire and spend his time climbing pyramids!

“I’m not ready to hang it up yet. There is so much on the horizon, my mind is still sharp, and I’m still really passionate about cancer treatment. So I’m going to hang around for a while still.”

YAY. Excellent news. For me and all his patients.

While those shots are very quick, I had forgotten that they hurt for the next several days after I get them, and that they leave raised itchy red welts on my flabby white belly for a week or so.  Nothing intolerable. I had just forgotten about that.

In mid-July, I met with the PA running the high-risk breast cancer program. She was very nice. She said there was no further information on the two “variants of unknown significance” found in my last genetic testing, and she will continue to monitor those. Based on my risk factors, I have a 22% risk of developing breast cancer by the time I’m 85, which puts me in the “moderate risk” range. (85. Yeah right.) Typically she recommends breast MRIs but they require contrast dye, which has the potential to harm kidneys, so we will forgo that. Instead, starting next year, I will have an annual ultrasound done in addition to the mammogram and an annual follow up with her (assuming she’s still there).

I saw the endocrinologist just about two weeks ago. All continues to go well, no concerns. I forgot to ask her about the need for a thyroid ultrasound. It seems like it’s been a while since I’ve had one. I’ll have to message her about that. I did go ahead and renew my access to her for the next year. It’s nice to have a doctor I can access both for endocrinology and other care as needed.

In the course of asking me about some of my family history, I told her that my dad died in May. He’d had dementia for the past year. I saw him in March (he lived in California). He didn’t know who I was, but he was happy, talked nonstop, and appeared to be well taken care of. He was also very skinny. His wife said he couldn’t eat much anymore so all his food was pureed. I had the strong sense he didn’t have a lot of time left. Unfortunately, I was correct.

We’ve had a difficult relationship for many decades, one that I feel like I’ve dealt with. But his illness and death stirred up a lot of stuff for my nieces and nephew, and their relationship with my dad and their own father. So the one good thing that has come out of this is I’ve established a relationship with them again after many many years. And not that I have all the answers, but I’ve been through a lot of what they are struggling with, so I hope I am at least a resource for them, someone they can talk to when they need to.

I told this to the endocrinologist, and she really would like me to get some counseling. She said between what I’ve had to deal with with my health and now with my dad’s death and the ripple effects from that, it would be a good idea to talk with someone. I am absolutely not against that. We all have stuff we could probably use some help sorting out. My only issue is finding time to fit it into my schedule. As I said to Rose, “it would be nice to have a day off where I didn’t have to go to the damn doctor.” But I’ll look into it. I will follow up with her in about six weeks.

I’ve been trying to get an appointment with my nephrologist for several months. I last saw him in September and was supposed to see him in March. But whenever I call, his schedule is either already full or they don’t have it out far enough to make an appointment. Call back at a later time, lather, rinse, repeat. I may have to change providers. I don’t want to do that. I like him well enough, and quite honestly, he’s not an essential part of my care at present, since it’s primarily managed by my oncologist. But when the times comes I need another biopsy, I’ll need to have a nephrologist. My endocrinologist recommended my sending him a message about my difficulty scheduling before I change docs, which I will do.

Other stuff:

I had a small weird thing happen when I attached my last glucose sensor. I’ve been using them for about a year now. They’re pretty cool. Nice to not have to poke your finger all the time. My new cell phone can finally support the app that goes along with it, but the reviews are so bad, I’m just sticking to using the little reader I have to carry around. No big deal. But the last time I installed the sensor, I was talking to Kyle on the phone when I suddenly realized I had blood running down my arm. I must have hit a little blood vessel or something. It wasn’t a big deal and was a little sore but it didn’t affect the readings at all. Just weird.

I had one instance of low blood sugar with symptoms (nausea, feeling clammy). My blood sugar was 54. I ate some cereal and was fine. I mentioned it to the doc, and she said if I had concerns, we could go back to Ozempic instead of Mounjaro. I said no, no concerns. I think the occasional low blood sugar is just part of having diabetes. That was the first time I’ve had any symptoms since I started on medication about two years ago.

I went on a few trips this year. The first was to southern California where I saw three very longtime friends, one of my nieces, and the impromptu drop in to see my dad. That was a fun trip. Lots of laughs. In May, I went to northern California to see my other longtime friends Rose, Susie, and Carlos. Just a great time in a small town doing a whole lot of nothing except hanging out and catching up. I think I mentioned this before but I went to college there and sometimes think it would be a nice place to retire. And then I see the prices of housing, gas, and groceries, and laugh and laugh. Guess I’m sticking to Albuquerque!

In June I went to my first in-person conference since COVID in Portland. It was a great trip because I finally got to meet one of Kyle’s sisters after 17 years. We did a lot of sightseeing (The Waterfall Tour!), had great weather for most of it, and the conference was good too!

I got in a hit and run car accident in early July. I wasn’t hurt but the front end of my car was badly damaged. I’m grateful I didn’t arrive at the intersection two seconds sooner because the other driver would have turned right into my driver’s side door, and I’m sure I would have been injured. My insurance company totaled out my car but I’m getting it fixed myself because it didn’t suffer any mechanical damage. As a matter of fact, it’s already repaired and sitting in my garage, but I can’t drive it until the MVD processes the necessary paperwork, which, they tell me, can take up to TWO MONTHS. That’s ridiculous. Hopefully it will be quicker. Until then, I’m very glad I have a car for work! Between Kyle carting me around and Uber and Lyft, it’s doable.

So, upcoming I have continued monthly chemo, a follow-up with endocrinology and dermatology, both in September, and probably an upcoming appointment with the oncologist in the fall. Doable!