Note: after I wrote what I remembered, Tamara added some good detail below.
The last update I wrote was only 4 days ago - that's a little crazy. Between this current crisis and a few others we've had to deal with in the past, we're learning that medical issues cause time paradoxes. Time both slows down and speeds up. You feel like you're at the hospital for a month, but you simultaneously can't believe that "we've already been here for 4 hours."
Anyways, Tamara made it through 9 of her 10 appointments (referenced in the last update), and so did the rest of us thanks to some very generous people who have cared for the baby, helped with school transportation, and brought us meals. Thank you so very much. I can't tell you what a load off it is when "doing the dishes" is synonymous with "throwing the pan away."
A few small details that made a big impact on us:
- Neither of Tamara's bone scans resulted in her "glowing" as our oncologist warned. The radiologist was kind of perplexed that we'd been told that she'd need to isolate after the scan. "You're close to me ... and you're going to be close to a lot of people on your way out of the building." In short, everybody was fine and Tamara was able to be very present for Elianna's birthday.
- The twins' birthday party has been moved such that I don't need to choose between it and a work trip. I'll be there the whole day to help set up, run the show, and take down.
- I was also able to move some things around at work that allowed me to be with Tamara at the oncology appointment today and make sure she got settled in with her chemo treatment (though I now regret that I didn't stay for the whole infusion ... foreshadowing ...).
Those kinds of details made life a little easier. We also were able to enjoy some of the test results we got back. Blood work, CT scans, bone scans - they all came back clean and normal. There is nothing new in those reports that our oncologist is remotely concerned about.
Along that same line, Dr. Dumlao also updated us on the lack of clarity we've been feeling about the lymph node biopsy. Good news - they were able to confirm that there was lymphoid tissue in the biopsy and that the "clean" result is almost-surely correct (can't every be 100% sure about these things). The only way to be more confident in those test results is to remove them surgically, which is already planned after Tamara is done with chemo.
Bottom line - we're as certain as we can be that we remain in Stage 2/3 and that the mass is still isolated to the breast. [cautious sigh of relief]
So, today was Tamara's first chemo therapy treatment. We've had so many people reach out to provide helpful advice, so Tamara was very prepared - giant tote bag full of blankets, pillows, mittens - you name it. We didn't have to wait long to be brought back into the infusion center where they used an ultrasound machine to make sure the nurse didn't have to dig around in Tamara's arm with a needle to find a good vein.
I made sure they brought her a good lunch, and opened the bag of chips and the cookies in case she couldn't use both hands. She had a blanket they had pulled from the warmer. She looked pretty settled in, though still anxious. The baby needed to be collected from the kind volunteer, and I needed to squeeze in a couple hours of work before the kids got home. So, I left.
This chemo thing is a strange process. It feels wrong to voluntarily allow poison to be injected into your wife's blood stream. Yes, it feels more wrong to let cancer accomplish it's objective, but even so it's surreal to watch it actually happen. We're powerless to stop the chemo process because we have no other means of fighting this thing. Mortality comes with a host of ailments, but this one ranks pretty high on the list of "things that could drive you insane before it kills you".
I say all of that because within 30 minutes of me leaving, Tamara started sending me updates like "Apparently, I'm having a reaction to the Benadryl." Why Benadryl, you ask? Well, that particular drug was meant to stifle the body's natural response to the chemo drugs. They give it in fairly high doses prior to administering the actual chemo drugs because of how toxic they are. After noting some spasms that the high dose of Benadryl was causing, they gave her some Ativan to calm the nerves and stop the twitching.
Then, even having been administered the pre-meds, she still had an allergic reaction to the first of the two chemo drugs. She started swelling up, her airway started to close, and she started seeing blurry stars. Tamara did keep sending me updates, so I knew she was okay, but ... I don't think I'll be leaving her alone again. Very scary for her, and for me at home with a sleeping baby upstairs and spreadsheets across my monitors.
The nurse, however, indicated that this is very normal - again, very alarming. After hearing about all of this, I wasn't going to just chill and wait for her to come home. So, I headed back to the hospital to pick up my toxic bride as soon as I was able. The original plan was to have Tamara drive herself back, but all the extra stuff they had to give her to calm the reactions made that impossible.
When I got there, she had just woken up (the allergy meds made her drowsy) and the nurse filled me in on a very eventful afternoon. Once the last of the 2nd chemo drug was infused we headed home. After passing into the dream world for a couple hours, and after a few failed attempts, Tamara did eventually recover her faculties and decided she needed to make some cheesecakes for the boys' birthdays. (This lady ... honestly.) She also got a head start on thank-you cookies for all those who have helped. All you can do is chuckle, sometimes.
Next up: installing the central port under her right clavicle so that we don't' have to mess with IVs anymore. I'm very curious to see what the recovery looks like for that. In the first few days, cold press should help. The oncologist also said that it may take a few weeks for Tamara to fully accept the presence of her new little buddy. Until then, there is likely to be accidental movements that are a little painful.
With any luck, after the port install, we'll be able to establish some semblance of routine. But who am I kidding. This is cancer. Routine is an probably a mirage, right?
Tamara's Account:
This is all very hard, and overwhelming. Lots of information and decisions that are supposed to be made when you can barely process the last things that were said. What follows are some details that I remember that Jared didn't.
Dr. Dumlao told us that these chemo meds will put me into temporary menopause..( YAY hot flashes) but I am getting my uterus and ovaries removed anyways, so it is just a head start on that. It will be nice to not have to worry about a period while doing chemo treatments.
I have been very anxious about starting treatment. I have cried in the kitchen with Jared and said things like "I don't want to do this, but know that I have to. I know this isn't going to kill me but I still have to be stripped of so much; to have feel the depths of hell and that is soo hard to think about."
We decided not to do the scalp cooling, which was a relief to finally have a decision on that. Jared knew that even if half my hair was saved I would still be extremely self conscious of the thin, patchy hair and the potentially-awkward regrowth pattern. He wasn't wrong - that would be very difficult for me. But I am extremely sad/terrified to lose all my hair ... it has been the one physical thing about myself I have actually liked. But c'est la vie.
Blood work today was difficult. The tech really wanted to get my right side, since my left side is all bruised up from the IV they gave me for the bone scan and CT scan. But my right side is harder and the vein kept moving around while she tried to poke it. (I already see and feel a bruise forming there as well). So when they put the IV in for the Chemo meds today, they did the right side again but a little lower with the ultrasound to guide them. (It still took them a little bit to find it and dig around to hit the vein just right...I hate getting IV's.)
As he said, Jared left after I was mostly settled and they were about to give me my pre-med drugs. The high dose of Benadryl made me really tired really quickly. So, I would dose off but immediately be woken up with muscles spasms in my arms that would clench my hands into fists. It was very annoying. They had already administered all of the dose so I just had to wait it out, they said...but then it kept happening for a while. So, she ordered Ativan to calm down the spasms.
Shortly after the finishing the Benadryl amd pembro, they flush the IV (this gives me a weird metallic taste in my mouth every time). She hung the first of the Chemo drugs...the dreaded Taxol...this is the drug that can kill off the nerves in your extremities. So, I have to have my hands and feet in ice gloves and slippers to avoid neuropathy for the whole time until the bag is finished being administered. Within a few minutes of this med starting I felt a hot, heavy weight in my stomach that made me think I may throw up. But before I could let the nurse know that, the sensation quicky traveled up my face, swelled up my lips and started closing my airway off. I started having a very hard time breathing. With significant effort, I was able to get utter "Something is not right" and then about 5 or 6 nurses rushed over - one of them equipped with an epi pen ready to be used. They immediately turned off the Taxol and put me on oxygen. I was pale in color but after the oxygen was on for a minute or two I was able to breathe better and the swelling in my lips went down. The stomach pain lingered the longest. They then prescribed me another antihistamine to help with the reaction of Taxol, and decided to administer the Taxol over 2 hours instead of 1 hour. This helped immensely and I was able to get through it.
It was crazy how fast things changed for me though...I did not expect those reactions. I guess they can me very common though.
I also want to say how grateful I am to all of you for showing love and kindness for Jared, my kids, and to me. It means a lot! It brings me to tears to think about all of your kindness, and for those that are close to me on the other side of the veil.
Now, 1 down...18 more treatments to go!
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