More Unintended Consequences

When last we spoke (Nov 3, 2020) I was awaiting knee surgery and the results of some tests that would determine my next clinical trial.

As I write this, it is January 3rd, the first day since I’ve been home from surgery that I have been fully conscious and alert. The consequences of my decision to have all these joint replacement and random illness all striking at once creating a perfect storm to take me down.

Though I posted a quick note on Facebook Christmas Eve explaining I was suffering from vertigo, I have not made all else public. Not because of any other reason than I have been completely unable to communicate.

First the Knee

Everything went as expected. Surgery was performed on Tuesday, December 8th. I went home on Thursday. Yes, it was slightly more painful, in different ways than the hips, but was manageable on pain meds. I started home PT next day. The knee continues to improve, no pain meds needed. It is still swollen and needs more rehab, but is the least of my current issues.

During my hospital stay I developed tinnitus. Not a big deal, I’ve had low grade bouts of that for years and didn’t think much of it until the first weekend home when I began losing my balance, and sense of space. Dizziness, vomiting, and constant nausea followed. And for fun, a UTI accompanied by incontinence. Party!

I don’t need to give you exact blow by blow but after a week, several consults, doctor visits and various meds I was finally able to tolerate being upright for short periods of time, but only after three hours of slowly prepping for being vertical. I don’t wish vertigo on anyone.

Week Two: and I thought last week was bad

December 21. Big day at MGH, three appointments scheduled. First up, post surgery and it is time to get the staples out.

I managed to get to the office using my walker, though it was a struggle. Knee looked great, then we started talking about the vertigo. I explained that the day before surgery I had a pain in my neck which moved to my shoulders by morning and were super tight. I thought it was just tension since it abruptly went away when they gave me sedation for the nerve block. I didn’t think anything else about it until I saw my PCP about the vertigo.

Ortho doc however was concerned about my neck, and since my next appointment was for a CT, he called down to add it to the scanning orders (I’ll interject to say that nothing has come of this. The scan was inconclusive. The remote possibilities of potential problems are all scary and unlikely. My oncologist recommended we set the issue aside until we settle more pressing matters.)

Back to my ambulating…halfway down the hall vertigo overcame me right where the ortho x-ray escorts are. They grabbed a wheelchair and bought me up to CT. Nothing exciting to report about that. I got wheeled upstairs for the third appointment, my first meeting with the new clinical trial team.

Fucking Monkey Wrenches

I spent the next few hours with my new nurse and clinical care coordinator. I had a mess of lab work, EKG, and the usual vitals. We talked about the expectations for this trial…I just realized I hadn’t told you about the new trial. Duh.

We discovered I have many new mutation, unusual for ER+ tumors. This affords me opportunities to fight the cancer in other ways, and it so happened that a new study had opened addressing one of my mutations. The drug and side effects are similar to my last trial, meaning not only could it be as effective, but that I might tolerate it well also.

Hence, the new team. The doctor was excited, the team was excited, I was excited.

Then both the nurse and coordinator disappeared for a bit. Eventually the nurse returned and we began chatting about my blood work. Everything looked great, we were waiting for one result before I could officially start on the trail.

Dun, Dun, Dun.

The results popped up and she excused herself to talk to the doctor. Grrr.

Awhile later the floor nurse checked in to see how I was. She left the door ajar and minutes later I heard my PA (the BOSS) and oncologist in the hall. I knew it wouldn’t be good news.

Every trial is different. They have requirements for the kinds of test they want like MRI’s and CT’s, and the levels of all kinds of blood tests. This trial has strict requirements for the liver. I flunked the test.

I will remind you, I had to stop my last trial November 13th, which means cancer has been growing unfettered since then, and sadly the tumors have grown big enough in my liver to make me ineligible for this trial.

The doctor really likes this trial for me so rather than pull me from it, it is decided that we need to shrink the growth, quickly. UGH. Of course that means CHEMO. Tonight.

Fine. Great.

That also means bone building shot and its side effects, and all the fun that chemo brings to the table (today was lose my hair day, but ya’ll know I rock a bald head so no biggy).

Chemo is a five minute infusion, two weeks on, one off. Today is week three recovery week and I’m feeling good.

I don’t yet know how long I’ll need to be on this chemo, it depends on how quickly the liver test can get to an acceptable level. We had a bit of good news last week when my lab worked reflected positive changes meaning that the chemo is already working. Then my neutrophils tanked and I needed white cell builders, necessitating a quick trip back in to MGH for an injection of Neulasta and more side effects.

I will be blunt, the last two weeks have SUCKED. Knee surgery, vertigo, tinnitus, nausea, stomach pains, bone pain, neuropathy, chronic fatigue, SOBBING, and then, because all that was not enough, I suddenly started experiencing completely numbness in my left leg. The leg that I am trying to rehab. I can barely drag it around. Why? WHY!!!!!!!!

New tumor on my left hip and growth on previous spinal lesions it the likely culprit.

If the vertigo hadn’t started easing up over these last few days, I might have exited this whole shit show (No, not really but it was bad enough for me to be thinking about just exactly where my line in the sand is).

At this moment I have no idea if this is permanent, if chemo or the new trial will help or if the lesions can be treated with radiation later. More conversation and consultations are ahead on the matter. In the mean time I can still get around albeit unsteadily. And, there is no telling if I’ll suddenly lose my ability to walk or not. This issue is my most worrisome given all I’ve been through so that I could walk again. This little monkey wrench is feeling particularly unfair.

There you have it. I’m spent. I’ll write more when I can, or when I know more. No worries if you don’t hear from me. It’s likely I’m just too damn tired, or brain dead to write.

I know this all sounds precarious, and a bit scary. I’m reminding you and myself, everyday gets a bit better, everyday I’m feeling stronger.

Chemo will sit my ass down next week when the lethargy hits but I’ve ridden this roller coaster before, its side effects are temporary. I’ll be fine.

Happy New Year!

Comments

  1. Lynne you are in my thoughts daily.
    And piggy backing on JoAnn’s comment
    Sa-Ta-Na-Ma
    https://www.3ho.org/3ho-lifestyle/health-and-healing/kirtan-kriya-sa-ta-na-ma-meditation

    This is my favorite audio to go along with it
    https://www.youtube.com/watch?v=HsP7_sOFclw

  2. JoAnn Darget says

    #2021 Mantra
    Everyday gets a bit better, everyday I’m feeling stronger.

    Balance Your 7 Chakras With These 7 High-Vibe Mantras
    We are all made of energy. …
    “I am strong, supported, and abundant.” …
    “I am the creator of my entire reality.” …
    “I am worthy of pursuing my passion and purpose.” …
    “I am love, I give love, I am open to love.” …
    “I am in alignment with my truth. …
    “I am in connection with my spirit and I trust my intuition.”

  3. Steve Morgan says

    Praying hard and Pulling hard for you Lynne.

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