Well my last fatigue driven blog entry was pretty flaky and disjointed, so I figured I'd just give the technical specs of things in this one.

Thursday morning I go to CancerCare for round 2 of the chemo we are attempting to control my immune system with. (and by control I mostly mean 'kick it in the butt so it stops making me sick - but hoping not to kick it so hard that it lets other garbage make me sick - yay tightrope walking).

Basically things went down like this:

March 30th - spent my birthday at CancerCare discussing our options. Options ranged from 'really crappy and scary' to 'even crappier and scarier'. We decided on the blander choice of really crappy and scary - decided to try a 3 month trial of Mycophenelate (MMF - an oral chemotherapy drug - also called CellCept). The upsides - it was oral and could be done at home. The downsides - it was a 'broad immunosuppressant' and would likely wipe out all my immune system. It also was slow - it would be 3 months + before we knew if it was going to work or not.

Most of April ticked by waiting for an appt to see my cardiologist and start the Mycophenalate trial. I was acceptably functional - almost completely NPO (nothing by mouth - no food or drinks) and doing OK on the TPN. The steroids packed a literal 65lbs of fluid on me over the winter, and much of March and April were spent watching that extra weight fall off me - it continues to do so.

May came along and kicked my butt. I can't remember specific dates but I wound up with a broken central line in mid-April sometime - the seal at the tip of the line (the part where the cap 'screws on' to the line) had given way. the nurses cut the line, and repaired it with a new end and basically a bunch of crazy glue. 2 weeks later, I had bloodwork done at the hospital through that line (first time I used that lumen since the repair). 2pm the nurse drew the blood and flushed the line. 7pm I was at home, septic, with a temp of over 105. It was unreal. I spent several days inpatient, on massive antibiotics, the line had to be pulled, placed a PICC line (central line that goes into the upper arm rather than the chest) and just overall got good and freaked at how horribly sick the infection (which was considered 'mild' for the organism they grew - and it was treated very fast... I cannot imagine a 'non-mild' version of this infection... the doc explained that the specific bug I had carried with it a 48-52% mortality rate. Scared me strait.

Fuelled by the terrifying sepsis ordeal and how close I realized I was walking to the edge while depending on TPN daily was a good kick in the butt. I called my oncologist and said I no longer want to trial anything - I want the most agressive, most likely to work treatment they could offer.

Within a week I had a vas cath (IV in the jugular that is the size of an HB pencil - i kid you not) and was starting a 14 day course of plasmapheresis (the treatment where the blood runs through a centrifuge and all my plasma is removed and replaced with donor products... 5 times over 2 weeks). Last Thursday I started my first round of IV chemotherapy drugs. These are the big guns and we are all very hopeful we will find some improvement with them.

So far the chemo is making me profoundly tired (told to expect that) but not horribly 'sick' like I expected, so that is a bonus. I spent the weekend once again shuttling back and forth to the ER for IV antibiotics for what was quickly evolving into a kidney infection - but again we nipped it early and only needed a few days of Rocephin.

My opinion of my local ER has grown immensely - the docs I have seen there lately have been fantastic, and the nurses are beyond awesome.

I have 3 courses of chemo left, and then we wait.

We are all hopeful it will work.

If it doesn't, we have other options... bigger, scarier and more sickening types of chemo, or (last resort) plasmapheresis forever (this poses serious and unique access issues - a small central line in the chest or arm is fine long term - a vas cath is massive, and has always led to signs of infection for me (high sed rate/ESR, left shift, elevated white counts, etc etc) - while I've never gone septic from one they have also never been in long enough to do much long range damage. Having a vas cath of any kind in one's body long term is a serious serious risk.

But - it's an option... and one that beats the alternative at least.

So we have lots of options yet - lots of hope - and several weeks to wait and hope that this current trial works.

I will very quietly say that my appetite is dramatically improved - I am eating small meals all day long and while they do hurt/make me sick, it's manageable - which it hasn't been since September - so this is a huge 'upside' - but we're told to expect it to get worse again as the plasma wears off - then slowly improve once more as the chemo works....

so roller coaster time.

Sadly we are in the process of trying to find a loving home for our 2 wonderful cats. because of the type of chemo im on, and cats knack of carrying/contracting/spreading otherwise harmless germs that could kill or maim an immunosuppressed person very rapidly, we have been forced to make the choice to find them new homes. We're all very sad. the boys are crushed. I'm very upset about it. But - it needs to be done. Life will go on.

Just one last stupid thing we have to 'lose' in order to try and 'live'.

Upside - everyone is fairly 'well' at the moment.

Chemo is going well.

My family is fantastic.

I'm beat and recognize how lucky I am to have a bed, in a warm house, with my loved ones, waiting for me to sleep in. Focusing on that.

2 comments:

  1. Wow, Keely, you are going through so much that no one should have to go through - especially a young and vibrant person like you... And with such a lovely family. I am glad to hear in your last post that your family is doing well, and now a few weeks later I hope things are continuing to go well and that those crazy meds are doing something to help you. I know you've disconnected a lot online, which I totally understand, but know that there are a lot of us out here thinking about you and wishing you a return to health & finding the right docs & meds to get you there.
    Sending hugs... Suzanne

    Suzanne

  2. Praying for you!

    Anonymous

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