25 September (day -4)

Good grief, I feel like crap. I once again had a very upset stomach early this morning (5:00-5:15 seems to be my witching hour) but thankfully I didn’t throw up. It was close though. I’m getting about 50mg of this new drug suspended in a saline solution and my nurse slowed down the drip time so that, perhaps, my body wouldn’t react quite so violently, but she also told me to call her if I began feeling nauseous. I finally cried uncle and more meds were given. I’m paying the price for that now – I’m pretty sure that’s what is making me so sleepy.

So, what does a person do to stay awake, besides drinking gallons of coffee?? I desperately want to curl up and nap all day but I don’t want to upset my sleep schedule. (Dammit, I just nodded off again.) I may go do walkies just to get out of my room – that may help.

I finally succumbed and snoozed after Rory and the kids came for a visit. I’m feeling a bit better now but still very groggy. I think I was out for about an hour, maybe a bit more, and must have slept like a rock.

24 September (day -5)

1. The realization that I won’t die from throwing up
2. New products that may help me get through this
3. Rory

Wow. The new chemo drug hit me like a speeding bus. The infusion didn’t get started until nearly midnight and lasted just under two hours, during which I felt sort of feverish and restless, but at around 5am the nausea kicked in and I’m very, very glad I had a bucket handy. Plus, I had a raging headache, which didn’t help matters. Today I’ve been trying to nap but the doc says to try to stay awake during the day; otherwise, my sleep schedule could get seriously messed up and I could end up with delirium. I’ve had that once before and it was unnerving, to say the least. The good thing is that all the nurses and support staff on this side of the Iron Curtain (the two sets of metal doors that close off the transplant patients from the rest of the floor) are wonderful and definitely know their stuff.

The day has been spent trying to do what the doctor says, which in my case means brushing my teeth and swishing with saline solution four times a day, not sleeping (much) during daylight hours, getting up and walking the halls (a very short hike indeed, since the unit is so small), and drinking as much water as possible. I’ve only been here a day and yet at one point today I found myself missing Rory and my bobbleheads so much it nearly reduced me to tears. I’m sure it’s because I know how long I have to stay here this time and that really weighs on me. I miss Lauren rubbing the back of my head and cooing, “Bunny fur!” I miss Basil’s snarky wit and goofy teasing. I miss my Ror. *SIGH*😔

23 September – back in the saddle

1. Rory – my rock, my anchor
2. A great hospital room
3. A happy, beaming Dr. Bachier
4. A big bag of Fritos 😄

After a hectic week of nail biting and worry, I’ve finally settled into what will be my home for the next month. There were some road bumps along the way – namely, my appointment with the radiologist on Wednesday, which didn’t go at all well due to their equipment being down. I ended up having only a consultation with Dr. Ha instead of what I thought would be the full Monty, which consists of thorough body measurements for accurate targeting of the radiation beam. When I went back this afternoon for the second half of the appointment, I was led into the room that housed the actual radiation machine. It was impressive, filling most of the available space in the room, with the ability to rotate 360º on both an X and Y axis. Despite the horror stories the radiologist tech told me about puking patients, Dr. Bachier has assured me that the actual radiation dose I’ll be exposed to will be relatively minor and no cause for alarm. Still, I sincerely hope that I’ll be loaded up with anti-nausea meds on the day of the TBI (Total Body Irradiation) because I. Do. NOT. Want. To. Puke!

Lordy. It’s nearly 8:30pm and my first chemo infusion still hasn’t started. I probably won’t get much sleep tonight! My nurse has just given me some anti-nausea meds (Zofran is our friend) and a whopper of a potassium pill. Plus, I get to receive injections to prevent DVT (deep vein thrombosis). I’ve had one of those before. I do NOT want to do that again. On the plus side, I’ve figured out how to adjust my room’s thermostat. Well, sort of. It was freezing when I walked in here this afternoon and the temp has been dropping steadily. I’ve managed to turn on the heater but I don’t know how to turn it off. The thermostat mode is also set to Celsius and I don’t yet know how to change it, so I’m dealing with a bit of a learning curve here. No one else seems to know how to deal with it either because it’s a brand-new unit, apparently. Great. I may end up stewing myself alive, like a lobster in a pot.🦞

16 September (T-minus 7 days)

1. No traffic on the road in to San Antonio this morning
2. My neighbors
3. My resumed morning walkies

Thought I’d drag my iPad along to my appointment this morning to pass the time while waiting for Dr. Santiago. There have been some recent issues with our health insurance carrier that I also hope to iron out before I’m re-incarcerated next week. (Yipe. One more week.) Apparently, United Healthcare is under the mistaken impression that we have other insurance, which is completely bogus. I just spoke to one of the financial advisers here at the office and she told me that our old insurance, Blue Cross Blue Shield, is still listed in their system, so that may be part of the problem. I’ve already spoken to someone at UHC about this and still, they keep sending me paperwork showing denial of coverage. Most of the charges are relatively minor – $50 here, $300 there – but they do add up and there’s one whopper of a charge from Option Health, the company that supplied my bags of Blincyto medicine as well as the portable pumps. That one amounts to nearly $60k. This is absurd. I was told back in late May or early June that I had met my deductible and all subsequent charges would be 100% covered. I don’t know why BCBS still shows as my primary insurance, unless some pencil pusher entered the wrong information into their database, which is likely. UGH. I hate having to deal with insurance companies. I do NOT need this level of stress in addition to the obvious anxiety I’m already dealing with.

There hasn’t been any more fallout from the lockdown at the high school last week, although we now know the cause. Apparently there was an alert from a student who claimed that they either saw another kid with a gun or had heard that someone had brought a firearm into the school. So, basically, it was a false alarm, but our local authorities had to take it seriously, which they did in spades. Rory and I were wondering a few nights ago just how much the New Braunfels Police and Fire Departments had spent in that one response. We guessed that it had to be somewhere in the neighborhood of $1 million, possibly more. *Sigh* I’m not begrudging our local police by any means, they did the right thing by responding the way they did, but this shows the heightened awareness of gun violence in our community, especially since Uvalde. Thoughts and prayers alone are NOT going to fix this problem. What do we do, though? Do we go after social media? Do we tighten gun laws? (Yeah, right. Like that’s ever going to happen in this country.) Do we focus more on the upbringing of our children? Regarding the latter, I’m sure that all parents intend to do the best they can, but kids still fall through the cracks and it breaks my heart. I’m no expert, I have my own parental issues that I’m dealing with, everyone who has children does. Still, this is the stuff that keeps me awake at night.

Oh, right, about that back pain. I mentioned in an earlier post that my back had gone all wonky from carrying around the portable pump. Well, I’m very happy to report that my pain is very nearly gone and I’m only experiencing some residual stiffness. I’ll have to be very, VERY careful over the next few weeks so that I don’t throw it out again. That happened last year at about this time and I do NOT want to experience that level of pain anytime soon!

I said goodbye to Dr. Santiago today. I may be seeing him again in a year or so, but for now he’s surrendering his charge to his colleague Dr. Bachier, who will be taking the reins from here on out. I’m not sure how to feel about this. He’s been my doctor from the start of all this madness and I’m going to miss his (mostly) calm, level demeanor very much. I had to give him a big hug before leaving the office and I actually got just a bit teary. It’s hard letting go of someone who has looked after you with such diligence. Okay, sure, I WON’T miss his occasional temper flares, but those were the exception!😄

9 September (T minus 14 days)

1. My kids are safe
2. The other kids at the high school are also safe
3. Compassionate teachers

Those gratitudes need some explanation.

There was a lockdown at the high school yesterday afternoon. I had gone up to our local HEB on the hill before picking up the critters and as I drove by the high school, I noticed several police cars with flashing lights as well as a couple of fire trucks. I thought, Huh, probably a lockdown, and continued on to the market. When I walked back to the car with my groceries, there was a police helicopter circling the school in the distance. Not a good sign. I intended to go wait for Basil and Lauren in my usual parking spot but the access to the road past the school was blocked by two county sheriff vehicles. Traffic was becoming a nightmare so I took a back route to the school, found a place to park, and tried to get in touch with the kids. Meanwhile, the road behind the school was becoming choked with cars containing panicked parents. With the heavy police and fire department presence, I’m sure everyone thought that it was another Uvalde. I know it certainly crossed my mind. Anyway, I didn’t hear from the kids and from the tone of the texts I had received from the school district, it didn’t look like the lockdown would end anytime soon, so I hustled the groceries home, grabbed a battery charger for my phone, hopped back in the car and fought my way back to the school, where I found another shady spot to park not far away from the student parking lot. I took my phone (with charger), left the car, and walked up to the school. There were police stationed at every entrance to the school grounds and no one was allowed to approach the school. I got another text message from the district saying that all students would be released one classroom at a time and would assemble in the football stadium to wait there for parents. The afternoon was bright, sunny and HOT, and there was no shelter to speak of for the kids. I and all the other parents and guardians had to hike around the entire athletic field area to get to the front of the stadium, where we were patted down by law enforcement officers before being allowed inside. I finally located Lauren and Jane, a friend of hers, but there was still no sign of Basil. We suspected that their class hadn’t yet been cleared to leave the school. By this time Rory had gotten in contact with me to say that he was on his way to the school to wait for our missing kidlet. We actually ran into him while hiking back to the car. By the time we made it there he texted to say that he’d found Basil and they were both headed home. Meanwhile, I had to drive miles out of our way in order to get Jane home (traffic on the ring road was still being blocked by police), but the route we took was very pretty and the girls were entertained by the scenery, which helped tremendously given what they’d just been through. We made it home safely.

We still don’t know what caused the lockdown but there are various rumors, the most credible of which seems to be that some boy thought it a fun idea to bring a gun to school. I do know that one parent, a dickhead yahoo who fancied himself some sort of hero, actually DID bring a gun to the school after the lockdown started and got himself arrested. This is exactly what our kids DON’T need: an irate parent with a twitchy trigger finger, trying to emulate Clint Eastwood or John Wayne. On one hand I can understand it, to an extent. After all, the local police in Uvalde utterly failed the children at that elementary school, and I’m sure this particular dad was going to make sure that the same thing didn’t happen to his own kid(s). Still, it wasn’t the brightest of ideas given the situation.

My two bobbleheads spent more than two hours hunkered under their desks. When leaving the school for the football field, one girl in front of Basil had a weapon pointed in her direction by an officer because she hadn’t placed her hands on her head as directed. The law enforcement personnel inside the school were barking orders at the students, scaring them half to death. All of this was likely due to sheer adolescent stupidity. And yet, because of what has happened, because of the senseless slaughter of innocents in our schools, the police have no choice but to take every threat seriously; otherwise, another community might be grieving over their lost children.

7 September (T minus 16 days)

1. Hope for the future
2. My donor❤️
3. Late afternoon sunlight in September

Sooo… the almost-but-not-quite-final schedule has me going back to the hospital on the 23rd. I’ve begun the countdown, which may change somewhat, but from what I learned today, this is nearly set in stone. I signed consent paperwork today at the bone marrow clinic and my donor’s T-cells will be collected tomorrow. I’ve learned that my donor is male, lives in Germany, and his blood type is A positive, so when this is all over, my blood type will be the same. I’ll be the complete black sheep of my family – a southpaw AND a different blood type! Everyone else has O positive, including me, but that will change. The T-cells will arrive state-side on the 13th, safely frozen and probably cocooned in either dry ice or a heavily insulated flask of liquid nitrogen. They will be sent to either the clinic or, more likely, the hospital, where they’ll await The Big Day, when they’ll be gently thawed and administered. By that point I’ll probably be knocked flat from multiple doses of chemo and a blast of radiation. Thank goodness for anti-nausea meds!

Yesterday I had what should be my final pre-transplant bone marrow biopsy. I went without a general sedative and had only a local, which drew stares and surprised comments from most of the nursing staff. Apparently about 90% of patients beg to be completely knocked out but I had to drive and I didn’t want to lie around in the prep and hold area, waiting for the drugs to wear off. Yep, it didn’t feel great, but the entire procedure, from the lidocaine injections to the last mop-up and application of the small bandage, had to be less than 10 minutes. It was… umm, unnerving to hear the bone drill and I know I flinched during the anesthetic shot, but I focused on my breath and the sound of the CT scanner – aka the Giant Electronic Donut – which emits a rhythmic hum and is actually quite soothing to listen to. Honestly, it wasn’t that bad overall. It certainly beats the crap out of being doped up on Versed and fentanyl! I pretended that the machine was generating a warp field around me and sending me through time. Yep, I am a hopeless geek.

So, yes, I am now without tubes of any kind! The Blincyto infusion ended Monday afternoon and the PICC line was removed shortly afterward. Which is probably just as well, because schlepping the additional weight of that stupid pump and bag of medicine has caused my lower back to go out. The entire weight of the bag – bump, medicine, pack and all – was probably less than five pounds, but it was just enough to affect my posture and put extra strain on my lower lumbar area, which is already a complete mess. Rory and I drove to San Antonio on Sunday and walked around the outdoor mall at La Cantera for a few hours and that must have been the last straw, because by mid-morning the following day, I couldn’t stand up straight and walked with a pronounced list to port when I moved at all. I felt better yesterday but I tried to go for my morning walkies today and that was a mistake. Ice packs and Advil are my very best friends right now. Blurgh.😬

4 September

1. My family
2. The rain we’ve had this week
3. The end of my Blincyto infusion

Munching on my favorite candy bar (dark chocolate-covered coconut). Enjoying the slightly cooler weather and the beautiful skies. Listening to Low-Fi Girl, a series of ambient tracks that make me think of San Francisco on a chill misty evening. Seeing how the recent rains have made everything outside so much greener. Knowing that by this time tomorrow, I’ll be unhooked from my Blincyto infusion for the last time and my arm will be freed from the tyranny of the PICC line.

Yep, life is pretty good.😊

That’s all the news that’s fit to print. I’ll have more to report on Tuesday after my next bone marrow biopsy. Those results will probably be available in a week or less and I’ll keep you all updated. I’m expecting another MRD negative verdict but Dr. Bachier wants to be 100% certain of that before we’re a go for launch. My donor’s T-cells have been collected and frozen and I’ve been given a tentative schedule for my hospitalization. Nearly everything is ready.

Breathe, Robin. Just breathe…

25 August

1. My little kitty attempting to crawl into my lap
2. Being able to pick up my kids at the same time after school
3. My tasty lunch

Welp, I now have a (tentative-ish) schedule for my upcoming hospitalization and marrow transplant. I’m due to go in on the morning of Sept. 21st (fall equinox day, wheee) and I’m supposed to begin five days of chemo, culminating in a full-body irradiation on the 26th with the Main Event, the actual transplant, on the 27th. Given that it’s nothing more than an infusion through my port, it’s probably going to feel very anticlimactic, but I’ll be monitored very closely for the next 15 days and on Day +3 (three days after the transplant), I’ll begin another two days of chemo. All of this is going to be very carefully orchestrated and during the time I’m in hospital, I’ll be kept in a room with a giant HEPA air filtration system going 24/7. During the appointment yesterday with Dr. Bachier and his coordinator, I was told that my hair is ONCE AGAIN going to fall out. Shit. And it was just starting to grow back. I have a fine soft dark pelt covering my head but I guess I can kiss that goodbye. Ugh. After all this chemical abuse I’m beginning to doubt that it will ever grow back! Honestly, this was the hardest news for me to accept. Not the possible mouth sores, not the possible sickness, not the fatigue, not the weeks of bored incarceration, not the meh hospital food. No, it was the hair issue. Oh yeah, and the eyebrows and eyelashes. I’m gonna look like a damn alien. AGAIN. Great.🙄

One good thing that I was able to glean from what Dr Bachier told me: My donor is being vetted even as I type this, and we were able to get Dr. Bachier’s first choice as well. Even better: I’ll have a chance to contact the donor after the transplant to pass along a hearty THANK YOU, which is amazing. This person, whoever he/she is, deserves a huge amount of gratitude.❤️

This is a fairly short post but I really don’t have much else to report other than a low creeping sense of dread, caused no doubt by the prospect of more hospital time with extra added toxic drugs. I am SOOOO done with all of this. I don’t want to lose my hair again. I don’t want to feel weak and useless. I don’t want to spend day after day sitting in a hospital room with little to do other than gazing out the window at the rest of the world. (Geez I hope I can get a room on the north side of the tower. At least the view is much better there.) I’ll take my yoga mat for some exercise but I’ve a feeling that the new chemo drugs I’ll be given will kick my ass every which way. I won’t want to get out of bed, let alone hold a plank pose for 30 seconds! I’m beginning to prepare for my incarceration by collecting a few meditation aids: incense, aromatherapy diffusers, my ever-present crystal collection (more because I think they’re pretty and make me happy than anything woo-woo). Of course, my singing bowl will once again be coming with me, as well as one of my soft cuddly blankets. I also plan on taking a generous supply of my coffee extract because, well… coffee! (I wonder if using our largest suitcase to pack would be overkill.😄)

22 August

1. RAIN!!! At long last!
2. My little Amy (a four-footed pain in the ass if there ever was one, but a sweet little bundle of love)
3. Cooler weather
4. A nice rich cup of hot chocolate

It’s raining right now, there’s a nice pork roast in the oven, and the whole household is quiet, each doing their little projects or re-checking their new school schedules and making sure everything is packed and ready to go for tomorrow morning. It’s really a very pleasant last day of summer break, even though I’m still feeling a bit melancholic over it all. The kids got their schedules this afternoon and each has at least one free period, although Lauren doesn’t think she shares a class, or even her lunch period, with any of her friends. Maybe this will be a good opportunity for her to branch out a bit and make more friends. I hope so anyway. That kid needs a sturdy support network. Basil is brash enough to weather minor upsets like this but Lauren is a different animal entirely.

I have an appointment with Dr. Bachiere tomorrow morning to sign consent paperwork. Basically it’s a “if you die as a result of the transplant you can’t sue us for malpractice” type of thing, or somewhere in the ballpark at least. That’s how I’m interpreting it – I may be wrong but I’ll know more after the appointment. Rory’s presence has been requested as well, so we’re going to take two cars and he’ll continue on to work afterward. The clinic has a strict policy about caregivers – a patient MUST provide proof that they have someone at home who will spot for them; otherwise, all bets are off. We still haven’t ironed out how I’m going to get to the clinic for all my post-transplant visits but I suppose that will resolve itself. I won’t be cleared to drive for three months after the procedure, but then, I’m technically not cleared to drive now with my 24/7 Blincyto infusion, and that hasn’t stopped me. When my nurse told me about this during my last hospital stay, I was like, “Ummm…” Apparently there is an increased risk of stroke with this drug. I knew about neurological impairment, but stroke?!? EEP. Okay, so I’m taking it slow and not taking any unnecessary risks. Other than being behind the wheel, of course. Uuhhh… Maybe I should re-think the whole driving thing.😳

It’s still raining, and it’s still wonderful.❤️❤️❤️

18 August

1. Fritos corn chips (more addictive than peanuts, in my book)
2. Slightly cooler weather (and a chance of rain – WOOT!)
3. Bees
4. Our little geckos that peep so sweetly after dark

Ugh. It’s only a few more days until the start of the kids’ last school year and I’m feeling it. I’m also feeling more than a bit short-changed over yet another stay-at-home summer. This was one of our last chances for a family vacation and the schedule became too crowded for any meaningful getaway time. We might be able to squeeze something in before Basil goes to Europe next summer but it’s going to be tight. I’m not giving up though. I’ll keep my eye on the calendar and maybe, just maybe, I’ll be able to figure something out, fingers crossed.

We’re back to the old hurry-up-and-wait routine. I’m approaching the end of my second week of Blincyto Part II and I haven’t heard anything yet from the transplant clinic other than the MRD negative news. Admittedly that’s a major deal but I want to get this whole transplant thing over with. I’ll be hospitalized for a month and the LAST thing I want is to be sitting locked up in an isolation ward during my birthday or any of the upcoming holidays (they’re right around the corner. Admit it. They’ll be here before we know it). I suppose I can make some plans for how to stay busy during my incarceration. Maybe I’ll teach myself how to knit or crochet. Don’t laugh, it’ll keep my brain occupied and away from bingeing on Netflix or Hulu shows. Or maybe I’ll dust off my old rapidograph pens, clean them out, and stipple myself into a quiet, cross-eyed stupor. It’s a thought.🤔