Tell the Bees

Up Next: An ‘Autologous Stem Cell Transplant’

Friends, family et al,

Again, sorry for the bulk-like e-mail but I’m sending this to about 70 people around the world at once.

After the January reoccurrence of Lina’s lymphoma in her spine she spent 9 days in Mercy Hospital in Portland where, 2 weeks ago Friday, she started her second round of chemotherapy. She came home several days later and we now have a ‘visiting nurse’ who comes to our house daily. Thanks to morphine, fast-acting chemo and all your positive energy she is now pain-free and doing much better – and only slightly buzzed. This past Friday and Saturday she was back in the hospital for the 30+ hour chemo treatment #2 – a process they will repeat Feb 17th & March 4th for a total of 4 treatments.

We spent Sunday & Monday in Boston meeting with the doc’s at the Dana-Farber Cancer Institute who we are told are the “world gurus” on fighting Lina’s large B-cell non-Hodgkin’s lymphoma. They are taking over leadership of Lina’s treatment from our oncologist here in Maine. They laid out for us an ‘aggressive plan of attack’ that we’re counting on to stamp this crap out so it doesn’t come back again.

You all on this list know varying amounts of detail about what’s going on – so…at the risk of being repetitive or more medically graphic than some of you may want – but, so that we don’t have to tell the story on the phone 40 or 50 times – here’s what’s coming at us:

When this round of chemo ends here in Maine after March 5th there will be 3 big steps in the treatment:

1. Testing/Stem Cell ‘Harvesting’ – early – ~mid-March

Probably in Boston vs. Portland, but not yet clear – they will do various ‘cancer staging’ tests to measure progress of the current chemo treatment – followed by tests on the health on Lina’s stem cells and bone marrow. Assuming they find healthy stem cells, which they say is likely, they will then do a 7-10 day out-patient chemotherapy with daily shots of outrageously expensive stuff which encourages stem cell growth. They then will hook Lina up to a blood transfusion like-machine. Excess stem cells are expelled from your bone marrow into your blood. So they run your blood thru this machine which separates out the healthy stem cells from your blood and puts your blood back in. They continue until they’ve ‘harvested’ enough healthy stem cells – which they then stick in a freezer for later use. Thus, no transplant donors involved. If her stem cells aren’t healthy it gets much more complicated so we won’t go there for now.

2. Radiation Treatment – ~mid-March – ~mid-April

Probably in Boston vs. Portland, but not yet clear – they are planning to zap Lina’s entire spinal column up to the brain with massive doses of radiation. The tumor which created this latest crisis is at the base of Lina’s spine. The radiologists in Maine said that there was no evidence of any lymphoma in the spine except at the base. But the Dana-Farber radiologists looked at the same MRIs and say that there are in fact more ‘hot spots’ up and down the spine. So… they are planning on at least 18 radiation treatments zapping a small area at a time – given once a day on an out-patient basis – moving up the spine to the brain. They say the side effects will be much worse than chemo and will be cumulative. We hope this can happen near home in Portland but if Dana-Farber thinks they can do it better in Boston, we’ll do it in Boston.

3. Autologous Stem Cell Transplant – ~mid-April – ~mid-May

In-patient at Dana-Farber. They say that calling this process a ‘transplant’ is a complete misnomer. It’s really just a massive dosage of chemotherapy. For a few weeks they give massive doses of ‘lethal’ chemotherapy which will ‘clean out every last trace of lymphoma.’ Then, when they think you can safely take no more, they ‘rescue’ you by hooking you back up to the blood transfusion machine to put your own frozen stem cells back in and bring you back from the brink.

So, after a brutal month behind us, it’s a brutal few more months ahead for us here and it sucks. But they convinced us it’s our best hope.

There’s lots of unknowns and obviously we’ll have lots of logistics to figure out with Lina’s work/my work/our girls schooling/housing/travel/finances/insurance etc etc etc. But we’ll figure it all out somehow.

Lina is the strongest person I’ve ever known. And all the medical people we’ve dealt with over the past 8 months are amazed at her positive attitude. All the written medical reports passed on from Maine to Dana-Farber say repeatedly, “a delightful patient!”

But… Lina, in her unique, blunt truthfulness – which we all know and love, has made it clear to me that she needs lots of positive energy right now. So… if you are depressed, scared for her, need cheering up yourself etc, etc, etc send her your prayers; but don’t call her. If you share her “white light” “positive energy” upbeat ‘we are going to beat this beast’ attitude, she’d love to hear from you. 207-799-2197. No faking it allowed.

I’ll take on all callers at my office – 207-775-0488.

So it goes…


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