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Archive for 'Craig'

Lina Update: Major Setback

Dear family and friends,

Lina’s stem cell transplant ordeal was not successful and her lymphoma has returned.

Since she came home from Boston in late June we’ve been through a lot – strange rashes, high fevers, bad blood cell counts and trips to the emergency room but the docs couldn’t figure out what was going wrong in her recovery – until Sunday.

Last week she started feeling dizzy – 2 days later she was having major balance problems. So on Friday they did a MRI scan of her brain and told us Sunday that she had two fast-growing tumors in her brain. One in her cerebrum which was affecting her balance and one in her frontal lobe.

It’s gotten worse – and she now can barely walk.

We spent all day Monday at Dana Farber. Tomorrow we go back – and at 7am on Thursday they will start a 4-week ‘clinical trial’ chemo drug mix hoping to halt the tumor growth. If all goes well, they will do a month of whole brain radiation in September. Because she and her blood still haven’t recovered from the transplant process they are ‘concerned’ about more chemo treatments at this stage – but have no choice.

So, it sucks.

We welcome all positive energies, prayers, whatever.

And Lina welcomes phone calls, e-mails and visitors.
207-799-2197
lina@maine.rr.com

We’ll keep you all updated,

love,
Craig

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Lina Update: Back Home and Recovering…

Dear family and friends,

Lina came home yesterday after 3 weeks at Brigham & Women’s hospital. She received her stem cell transplant 2 weeks ago today and her blood counts had recovered to the point where they felt it was safe to release her from the bubble in the hospital to the semi-bubble at home. The last couple weeks were pretty rough for her – but it all developed pretty much as the doctors had foretold. On Friday her blood counts started to rise sharply as her stem cell replacements ‘took root’ and started producing.

She’s tired but doing great and happy to be home – and a clean home it is – thanks to the group of friends who spent Saturday helping me and the girls make it as germ/dust free as possible.

She will continue recovering at home for at least the next 3 months as her immune system rebuilds.

She welcomes phone calls, e-mails and visitors (unless you are sick).
207-799-2197
lina@maine.rr.com

We’ll keep you all updated,

love,

Craig

PS… Chloe passed her drivers test.

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Lina Update: Transplant Process Underway

Dear Family and Friends,

Lina was admitted to Dana Farber/Brigham and Women’s Hospital last night, Monday May 29, to begin her 3-4 week stem cell transplant.

She was scheduled to go in last week but a bad cold pushed the schedule back 1 week.

She had surgery at 7AM today to implant tubes into her heart for next week’s blood transfusion that will return her stem cells.

At noon they started the 4 days of massive chemotherapy. Next Monday, June 5th, is what they call “Day Zero” – the day they replace her stem cells.

She’s tired and sore but doing great so far. She’s got a loaded I-pod and is planning to learn to speak Spanish in the next 3 weeks listening to an audio book.

She welcomes phone calls, mail and visits (no kids allowed / be prepared to wear masks and gloves / might be good to call first).

No food stuff or flowers allowed.

Mailing Address:

I’m at the Brookline Marriott again tonight but returning to Maine tomorrow night to take sweet-16 Chloe to her driving license test Thursday AM. She’s had a big month – going to the Senior prom looking beautiful in Lina’s 1969 prom dress and having a great time – and having an opening for her art work at the high school. And 11 year old Moriah is the star pitcher of her softball team, just made advanced math for next year’s 6th grade and she just won the design contest for the t-shirts in the big Beach to Beacon Road Race in August .

The girls and I will come back to the Marriott this weekend.

IÂ’ll keep you all posted.

Love,

Craig

And for all who have asked….

What’s a Stem Cell Transplant?

It’s a misnomer. It’s really not a ‘transplant.’ It’s a 4-day lethal dosage of chemotherapy which, hopefully, kills all microscopic traces of cancerous cells but in the process kills healthy stem and bone marrow cells. To ‘rescue’ you they replace your destroyed stem cells with previously frozen stem cells.

A stem cell is the parent cell from which all other blood cells and the immune system are created. Our bodies are constantly producing the cells that make up our hematopoietic (blood) and immune systems. Hematopoietic stem cells are the “mother” cells of the blood supply, giving rise to the oxygen carrying red blood cells, disease-fighting white blood cells, and platelets needed for clotting (Hematopoietic stem cells are different from embryonic stem cells, which can develop into every type of cell in the body.)

When the stem cells come from your own blood or bone marrow, it is called an autologous transplant.

When the stem cells come from another person, it is called an allogeneic transplant.

Most hematopoietic stem cells are found in the bone marrow, but some cells, called the peripheral blood stem cells (PBSCs) are found in the blood stream. Blood in the umbilical cord also contains hematopoietic stem cells. Transplants can also be done with a patientÂ’s own stem cells or stem cells from someone whose white cell antigens closely match your own.

Stem cell transplant is the term now used to described bone marrow transplants and transplants done with stem cells found in the blood. During a transplant, bone marrow/stem cells that have been destroyed or damaged by chemotherapy or radiation therapy are restored with healthy stem cells. Think of the stem cell transplantation as a transfusion of blood and immune system cells rather than a surgical procedure. During the stem cell transplant process you receive chemotherapy in doses that will destroy cancer cells (along with your bone marrow/stem cells.) Then your body is “rescued” with an infusion of healthy stem cells (that have been frozen since the “harvest”.) The new stem cells grow and produce all of the different parts of the blood that both your body and immune system need and your blood counts should return to safe levels in about 2-6 weeks. Complete recovery of the immune function takes much longer, up to several months.

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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 CommonDreams.org office – 207-775-0488.

So it goes…

Love,
craig

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Major Bump on the Road to Lina’s Recovery

Dear family & friends,

Sorry for the bulk-like e-mail — but I’m running on empty.

Lina’s chemotherapy treatment ended in late October. In early November the oncologist told us Lina was ‘miraculously’ in complete remission. “Break out the champagne — but save the good stuff until we make it 2 years with no re-occurrence,” he said. We celebrated, nervously, and soon she was back at work and her hair was growing back.

Then a few weeks ago, Lina began having a sharp back pain – which quickly worsened.  Our family physician — who our HMO requires us to go through for everything medical — said the back pain was probably just caused by a muscle pull or pinched nerve caused by a fall on our icy driveway in December.  “It couldn’t be lymphoma related,” she said, because the last CAT scan/MRIs were clean and so recent. And so… the family physician would only prescribe physical therapy and acupuncture – not the more expensive MRIs and CAT scans that could check for possible new tumors.

The pain grew intensely severe – to the point where Lina couldn’t function at all, even with heavy medication. Then our family physician didn’t return our numerous phone calls for over a week. I was frantically pissed off and demanded to her staff that she order us an MRI to find out what was going on. And so, finally, last Tuesday Lina went to Maine Medical for her 2:00PM MRI exam. Soon after they finished, the MRI technicians told her only — “Get down to our emergency room fast!” She called me scared and upset and I rushed back to the hospital – and then we wait, and wait, in the emergency room line for over 7 hours – with Lina crying out in intense pain the whole time. At midnight, we finally see an emergency room MD who knows nothing about Lina’s case or the MRI results and actually asks us, “So why are you folks here tonight?”

Eventually, they page her then-asleep oncologist at 2AM and tell us they need to admit Lina into ME Medical right then.  I tell Maine Medical Center, “after the way you treated us tonight – fuck you,” and we left and drove across town to Mercy Hospital instead where they admitted her at 3AM.  All day Wednesday they do lots of tests then called to tell me that the pain is being caused by an incredibly ‘aggressive’,  i.e. fast-growing, lymphoma tumor at the base of Lina’s spine — which is seriously messing with all the nerves to her lower body and paralysis or worse is imminent if they don’t stop the growth immediately. Wednesday-Friday she was in rough shape with such intense pain that the maximum morphine dosage they could give her wasn’t even enough. And, her systems were all going into shut down mode — and so now she’s hooked up to lots of life-support machines. They have her on a morphine pump and the pain seems to be finally under control. At midnight Friday, they started a new round of chemotherapy that gets into her spinal/brain system but it takes over 11 hours to administer. She’ll have it done every 2 weeks indefinitely. Tomorrow, if the tumor hasn’t responded to the chemo yet, they’ll start radiation treatment aimed at her spine. Her oncologist MD says that once they’ve got her stabilized they will move her treatment out of Maine and to the Dana-Farber Cancer Institute in Boston — probably for a ‘stem cell transplant’.

My girls and I broke hospital rules tonight and decorated her walls with lots of family art. Lina was doing much better spirit-wise and says she’s ready to fight back and beat this. And, we are shopping around for a new ‘HMO-approved’ family physician.

So it goes…

Love,
craig

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