Friday, March 23, 2018

Inching Towards Seven

In less than two months it will be seven years since my myeloma diagnosis. That means that more than 12% of my life has been spent with myeloma.

To paraphrase Bob Dylan and totally changing the context: Yesterday went too fast and today is going too slow.  February flew by and this week dragged on and on. I wrote about my bout with the flu and my strong sense one night that I may already be dead, as I discussed in a previous post.  Honestly, I'm still not certain that I'm not currently in purgatory and sorting through my life.

Right now, I'm siting here on a Friday getting my monthly darzalex infusion.  It's my first chance to actually relax, write, listen to music, think and nap.  Monday I was at the LLS office doing my volunteer work supporting their First Connection program...a peer to peer program that connects newly diagnosed blood cancer patients with a veteran of the same cancer.

Tuesday I was at Berenson. Everything there is great, darzalex continues to work its magic. Getting there is a huge pain. 30 miles each way, which takes a minimum hour and half.  My numbers are fantastic and kidney function is great.  At Berenson I give research blood in support of the work he does with his non-profit The Institute of Myeloma and Bone Cancer Research.  My next fund raising activity, yet to be determined, will be for them. Poke Number One. Thank goodness for my port, I was poked 4 total times this week and my veins would never be able to handle this. A couple of weeks ago I was having horrible night time pain where the tube from my port dives over my clavicle. It seemed as if scar tissue had built up that was causing me the pain. I was scheduled to have the port replaced in a new site. But the pain started to lessen and I cancelled the appointment, not wanting to undergo yet another procedure, albeit a simple one.  Eventually the pain went away. Turns out it was scar tissue from my previous port and it was breaking up.

Wednesday I saw Dr Phan as is protocol before I do infusion.. However I did my labs two weeks ago, too early..trying to outsmart the fuck ups and delays of Labcorp.  But it was too soon, so Phan wanted me to do another blood draw. He also wanted to check my IGG which is a representation of my immune system. Like many darzalex patients, I've been getting a lot of colds.  To remedy this, folks get an IVIG; intravenous immunoglobin. If your IGG is under 500, then IVIG is approvable by insurance. While Berenson thinks IVIG would be perfect for me and anecdotal studies indicate it may help keep myeloma at bay. Makes sense to me, it is boosting my immune system after all. Phan, though, is a little hesitant. He thinks it may bind to darzalex reducing the immunotherapy's effectiveness. He worries too it might tax my kidneys. He wants me to get another ok from Dr B and my kidney doctor before we do the IVIG. It's a monthly infusion that lasts 4-5 hours and cannot be done the same day as darzalez. Most recent IGG labs are at 265.

I did my blood draw at Phan's office from my port, Poke #2, and took my 2 tubes to mother fucking labcorp.  CBC and CMP (basic blood info) were stat and the IGG wasn't stat.  The tech at labcorp said I needed another tube. I've been doing this long enough to know there is plenty of blood to run the required tests using what I provided. But she wouldn't budge and said I needed blood from a distinct tube. I had a fit, my first good fit in a while. I was pissed. They offered to draw my blood there, but the problem is my right arm veins don't work and on my left arm a fistula usually precludes blood draw. The fistula is there for dialysis and has never been used,  and doesn't even work any more (no more party tricks with my super vein). In special circumstances I can draw blood from the left arm. But I know the lab techs at labcorp aren't the most gentle and I'd end up with a massive bruise on my left arm. I'm always low on platelets and taking a daily aspirin so I bleed and bruise very easily. I didn't want a bruise on my arms..knowing that seeing a giant black and blue mark on my arm wouldn't be good for my tender psyche. So I passed on having them draw blood.

Thus I had to return to Phan's on Thursday for Poke #3 to get the new tube for the IGG test. Back at labcorp, the techs sat there smugly feeling like they won this small battle. Fucking assholes. I'm switching labs ASAP.  Options are Quest or some small lab. We'll figure it out.

A couple of weeks ago, I was at the LLS annual Blood Cancer Conference. I ran in to an old work acquaintance who spotted me. He was with his wife who works at Cancer Support Community in Redondo Beach. It's an amazing facility, offering, for free, a wide wide range of services and amenities to cancer patients. I had looked in to them years ago, when I realized I needed help with my fitness. At the time, I was still working, and the drive to their facility would have been too burdensome.  But meeting the old work acquaintance and his wife turned out to be serendipitous. She needs volunteers. I visited the facility on Wednesday and was totally impressed and blown away by what they offer. In the near future, I'll be volunteering there and taking advantage of their offerings.

Thursday I was had a dermatologist appointment. We trying a new treatment on my fingers to get rid of the warts. My crap immune system allows them to flourish and it really sucks. This was my second treatment. Basically we zap and burn and use topical appointment to get rid of them. It's a nearly three hour process, with the last five minutes being painful. I wrote about this recently. It seems to be working and in a month we'll do treatment 3 and hopefully the last.

As I indicated earlier, today I am at Phan's office for my five hour infusion. It's pretty darn relaxing, I must say.

2 comments:

  1. Sounds like a pretty full week for one that seemed to drag on.
    Love,Mom

    ReplyDelete
  2. Love your personal updates Matt. So helpful to read other's experiences. How long have you been on the monthly Darza? I've been on monthly since mid Sept 2017, but recently my IgA is moving up, so on Monday, for my next Dr appt and Darza, I'm going to inquire about going back to more frequent infusions. Any thoughts on this?
    Hoping you're out and about enjoying retirement. Today I'm headed for a PET CT Scan... Have you done that?
    Feel good, and stay well! Julie

    ReplyDelete

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