May 10 2011

whirlwind week, plus actual good news bits

Published by Reesa at 4:59 pm under health, irradiant, me vs. cancer = I win, transitions

This is a very full week. That also means it’s a difficult week, compounded by the fact that over the weekend my pain levels started climbing rapidly again and my hips are now even more unstable, giving out several times a day when trying to stand up or sit down. It’s also affecting my sleep again, both making me unable to fall asleep at times and awakening me due to pain other times. It isn’t just my hips but my back, and the pain surges are almost like electric rapid throbbing all up and down my core, wrapping around my ribs, even making it a bit difficult to breathe at times. The lump under my right arm also flares up daily, swelling up enough to put pressure on other muscle groups throughout the right shoulder area and being uncomfortably painful. I can’t do the hot tub (dr’s orders) and I do miss it now, though I’d gotten quite sick of it before childbirth since I was using it several times a day for the pain I was in then. I am allowed bed-buddy and heating pad, so am using that on the shoulders and hips/back, and I put an ice pack on the underarm lump which doesn’t do much but is better than nothing.

Yesterday had the consult for the port catheter install, which is scheduled for horribly early tomorrow morning and which will be difficult both energetically and logistically to accomplish. It is surgery with local anesthesia and heavy sedation, and hopefully also accommodations for the fact that I can’t stretch myself straight on a table or bed. (I spoke to the doctor and he said they can prop my legs up no problem, and I’ll remind them of it tomorrow.) As Jay Lake laughingly calls his, afterward I will have my very own Harkonnen heart plug installed. The port catheter is a device installed into a central blood vessel that feeds directly into the superior vena cava. The doctor was really awesome in the consult, giving me the 30 year history of these devices as he was explaining the procedure. I learned that only about 85% of these allow for blood draws from the area, so hopefully I will be in that majority as I am having difficulty lately with successful blood draws (lots of re-sticks and bruising for days). The main reason the port caths are installed is because chemotherapy drugs are very harsh, and if put in a normal IV will eventually result in collapsed and scarred veins that can’t be used. I won’t have anything visible on the surface once it heals, and it is designed to stay in semi-permanently as chemo treatments will last for months.

Today had another follow-up with the medical oncologist to discuss the CT scans from last week as well as the most recent pain changes and upcoming cath install and chemo. We have also started all the medicaid pre-authorizations so that hopefully we can stay on the timetable for the rest of this week’s plans, though of course that might not happen. (Haven’t yet heard nay on the cath procedure, will call a bit later today to make sure but have to assume that at least is staying on the schedule.) The doc is concerned about the new pain increase and the differences in how I am describing the back pain, so he has ordered an MRI (which we’ve scheduled for Thursday, pending Medicaid approval) on my thoracic spine as the CT scans don’t give a clear picture of what is happening in that area. His concern is that the tumor there might have shifted to putting more direct pressure on the spinal cord, which would be fairly bad news if so, and the MRI will be able to determine that more clearly. Hopefully the MRI scan will be able to accommodate the leg problem also; I was so out of it from pain when I had the first one several weeks ago that I can’t remember if they propped my legs or not.

But I promised good news bits, and here they are. The CT scans from after the radiation treatments were compared to the ones taken before. The effects of the radiation will still be happening for several weeks (they’ll be taking another set of CT scans after 2 rounds of chemo for further comparisons) and so the full effects aren’t yet known, but the liver and lung spots and underarm tumors all either stayed the same or grew only slightly (none of those received any radiation so it’s good that they haven’t changed significantly). The spine had some changes (more will be learned after the MRI on that), but the hip/groin tumor shrank to almost nothing. Also he mentioned no sign of a tumor in the left hip, so whatever badness is happening in my hips is at least not more cancer. The hips will remain weak and unstable until the bone has time to repair itself, so I have to be vigilant for weeks more to come, which is rather scary. It’s also likely that my body is still finishing up flushing the relaxin out of my system from pregnancy, which would contribute to the instability of the hip region. I think I’m more scared about the pain increase and the hip issues than I am about the upcoming chemo.

Speaking of, pending authorization, I will be starting chemotherapy on Friday. (I said it was a crazy week!) We are choosing a very aggressive set of chemicals, such that I will apparently only be able to do a maximum six rounds of this combination before we have to switch it up, due to the danger longer-term to my heart with repeated use. It’s normally given every three weeks but we’ll be trying for every two weeks assuming my blood count permits, to try to hit the cancer as hard and fast as possible. He wants CT scans after two rounds, as I mentioned, and depending on what those scans show will determine how many more rounds of chemo we’ll do before scheduling the mastectomies and underarm lump removal. It sounds like I’ll have a fairly normal range of side effects. Nausea and vomiting can happen for 2-5 days of the cycle; mouth sores; fatigue (ongoing); low blood cell count (peaks about a week after infusion); and of course, hair loss (begins about 2-3 weeks after the first dose). Of all of these, I’m of course most upset about the hair loss, as I have not cut my hair (except for trimming) since I was my son’s age. I like having long hair, never wanted to have anything but since I was a little kid, so that’s another of life’s little ironies for you. The doc assures me it grows back, but that doesn’t change much of the initial yuck of having to go through the hair loss. I plan to do crazy henna designs and wild and wacky scarves, so if you know where to get good head scarves let me know!

Increased pain increasing, so this post is plenty long enough for now.

3 Responses to “whirlwind week, plus actual good news bits”

  1. Allysonon 10 May 2011 at 5:42 pm

    Hooray for shrunken tumors!!

  2. Briton 11 May 2011 at 7:01 am

    Aw, I can only imagine the fear of losing your hair. You have always had such beautiful locks. I have a classmate who is muslim and always has the most beautiful hijabs. I’ll find an exotic scarf for you.

  3. Jay Lakeon 11 May 2011 at 1:41 pm

    You blaze much farther down the path I am walking again. I admire you.