Wednesday, March 9, 2011

SGN-35 Treatment Four

So much has happened since my last blog post, much of which has kept me from writing. For starters, I had a negative breathing reaction to my most recent treatment, my bladder near burst, our half-finished basement flooded with a foot of water, our furnace busted and with it our heat and hot water, my sister moved to Vegas, and I'm "scheduled" to start my allo transplant on March 17 – yes, that is in 8 days and it is St. Patty's Day. "Tweedle dee dee," says the Leprechaun.

I'm holding on by the skin of my teeth trying to keep it together. The oppressive "To-Do" list helps to keep my mind off the anxiety of the medical procedure itself and the basement/no heat issues have brought their own distraction baggage. For me, who can't be around the dank water and impending mold and mildew, this has included lots of phone calls and house calls from firemen, insurance adjusters, HVAC pros. I am so grateful to have Craig who soaked through four pairs of shoes, a lot of duct tape, and a lot of mopping to get all of the standing water out through a comical series of hoses and drainage piping and into the street. Even our old lady neighbor came out to tell Craig that all the bridge club ladies in her house were laughing at him out there in the snow wearing shorts and wielding spouting tubeage. My hero!

What I mean by oppressive "To-Do" list is that I found out this past Thursday when meeting with my transplant doctor that there is a very good possibility that I'll be moving to New York City next week for a very long time. There is a shit storm of logistics, laundry, paperwork, bills, packing, insurance, household tasks, and filing to get together before that happens. And it may very will be a repeat of September when we got to this point then had to turn back around.

Dr. Sauter has scheduled a PET Scan, resting echocardiogram, and pulmonary function test for me on Monday, March 14. He'll call me to go over those results on Tuesday and make the "yea" or "nay" call. If all of my body functions are acceptable and my PET Scan essentially clear then we move onward and I'll be admitted the next day for a new catheter placement then start the inpatient lead-in chemotherapy to knock my immune system down to zero. Simultaneously, we'll fly my sister back to the east coast and start pumping her with twice daily shots of Neupogen to stimulate her bone marrow.

We are preparing for this to happen and also trying to prepare for what it means if it doesn't happen yet, which is that there is still cancer present and that more SGN-35 is needed. I'm warier of continued infusions of SGN-35 after last week's scare. The bronchial spasms that I had been getting mildly with the first three infusions got worse with this one. About 30 minutes post-infusion I couldn't take a deep breath without spastic coughing so the chemo nurse gave me an Albuterol breathing treatment to open up my breathing tubes and then shoved oxygen tubes up my nose while my mom and sister had to sit there in fear watching it all go down, though they played it cool. What was not cool were three fully garbed nuns and a priest that kept walking by the room I was in as if they were ready to pounce and bless me if I redlined. It was like the set up for a bar joke.

The nurses monitored me for another hour after that as our day got progressively longer. Then at 3pm, we got the visit from Dr. Sauter who gave us the transplant plan. Luckily, my sister, Kristen, was there with me (a strategic move on our part on the off chance that they might be able to do some pre-transplant testing on her before she moved out west). We lucked out as Dr. Sauter somehow made it happen that Kristen got to see his nurse practitioner to go over the whole donor process/restrictions/procedure/drugs/paperwork with her again, do a full body exam, get her a chest x-ray, echocardiogram and draw 14 viles of blood from her. This was a surprise and a relief to all of us. We ended up sitting across from each other in the lab, each of us with a needle in our arm watching each others' vials of bubbling red blood stack up on the counter. I can't even imagine what this must be like for our mom to witness, but somehow she is still able to crack jokes and deliver us lunch.

Since then, I had two day of tremendous bladder irritation, spasms and pain that knocked me right out. The irritation came almost immediately after the infusion and I was writhing the whole train ride home. But on day three, all was gone and besides having to go every hour on the hour, my bladder is back to "normal". I also had a shot in the behind of Lupron, a drug that puts me into a temporary early menopause in the hopes of protecting my ovaries and keeping me from bleeding during the transplant ordeal. It's left me with crazy hot flashes and emotions. The tremendous fatigue remains, as do the backaches, but overall I am okay. Eye on the prize.

All now rests on the results of Monday's PET Scan. "All" includes not just going into transplant, but when Craig's leave of absence from teaching will start, when we'll need Miracle House and Hope Lodge accommodations, when my sister should book her flight back to Connecticut, when we'll need a Sammy dog sitter, the list goes on and on. It is all teetering in balance. In the meantime, we're packing our bags and closing up shop one checked box on the "To Do" list at a time. Right now? Laundry is going, the insurance adjuster is here, and I'm fielding calls with social workers and Miracle House then must break for a desperately needed nap before yoga class. Tax filing time tonight.

In the wise words of Charlie Sheen: "Duh, WINNING!!!!!!!!!!!!!!"


  1. much to prepare... and having to dodge all the other shit...but you are so right..."eye on the prize" Continue thoughts & prayers being sent to you from me!! Much love - Karen Jacobs

  2. All my hopes, wishes and prayers to you Karin, good luck!!!!!! Tricia

  3. Wow!!! Here it all comes---finally!!! All will be well and it will be all worth it!! You are amazing!! Will be thinking of you, praying, and know that it will all go well---xoxo Bev & Blake

  4. As always, we will continue to send our prayers and best wishes to you and your family. YOU WILL WIN!!!!

    Frank and Laura Loyot and family

  5. You had a lot on your plate back then, even before you added the flooded basement to the list. I hope you fared well, despite the odd circumstances stalling your progress. You were right about doing things one step at a time. With your condition, the last thing you needed was to make it worse by stressing yourself with those pet peeves. I hope everything is alright now. Have a good day!

    Gail Wallace @ Emergency Flood Masters