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Hi there Folks,

     Back home after  a 1 day/2 nights weekend getaway at the Duke Adult Bone Marrow Penthouse in Durham. Blood Tests, a transfusion and some IV Magnesium, and I was pronounced good to go by the presiding Duke and Duchess.

     We did the right thing by going to the Emergency Room on Thursday night, and if I have another episode of a high fever and chills, I will do it again. We had my abandon ship bag packed ( two pr Scrubs, First aid kit, benadryl and tylenol, disposable underwear and gauze pads, two Buffs, wool socks, two long sleeve shirts, a towel and a copy of The Hitchhikers Guide to the Galaxy)  and only had to grab the tackle box with the meds, and my dopp kit, Kindle, ipod, and Medical Records loose leaf,  and we were out the door.  It was a good drill, made it to CGH in about 14 minutes without using the flashers or exceeding the speed limit.

    The nursing staff at Carteret General, both in the ER, and when we were in a room on the new 4th floor was absolutely wonderful - professional and caring,   I must mention Erin, who was most helpful even though she was training two new nurses and had her hands full with other patients.  And even though I had only been inpatient at Duke for 6 days back in April, (right after the transplant when I really tanked and was not very lucid) there were several of the same nurses on duty and we had a good reunion.

     We learned a lot about hospital procedures, and the ride in the transport ambulance  left me wanting one for a camper conversion project. The trip to Duke actually took the same amount of time as the GPS lady that lives in Anne's dashboard says it should. 3hrs 10 min. Of course the GPS cyborg lady does not have to stop and pee, and we rarely made the trip in under 3 hrs 45 min.

     We hope this was just a hiccup in my recovery. It was really freaky the way all my numbers - Whites, Reds, and Platelets - dropped so precipitously from what they had been only 12 hrs earlier.  In the wake of what  must have been some kind of food poisoning they had plummeted, and I lost a lot of ground.  Current thinking is that  the tremors, high fever and nausea produced a Cascade of  Cytokenes, and the chaos caused by a bunch of cytokenes shouting orders to my new baby immune system and the dwindling numbers of my original B predators caused some hematological  cannibalism to occur, which I was able to slow with an antihistamine, and once the fever subsided things started to settle down.

     Some good lessons were learned, not just about packing our own food for a while longer. And I have a bunch more materiel for an upcoming post entitled:

"How to Survive a Hopsital Visit" or "Tips for Staying Alive in Hospital".


Cheers,

Chris

Day 115 update

We arrived home in Beaufort on Saturday the 13th.  Following Wednesday we had an appointment at the Raab Clinic. It was great to see everyone there, and it was so nice to be back in our own bed, with familiar surroundings.  Walked downtown and saw a bunch of people, it was such a relief  to be back home.

On the 24th we went back to Duke for a follow-up visit, and all was well, discussed Bone Marrow Biopsy and things were looking good.

Back home that night, at three am I woke to a fever of 100.4, chills and tremors.  Blew lunch.
( a pastrami sandwich from Elmo's Diner in Durham, and dinner at the Outhouse Steakback in Goldsboro)

Went to Carteret General ER at 4 am, blood numbers dropping.  Got a room and have been in for a day and a half.   Fever off and on, Blood numbers still dropping.  Now it is Friday the 26th and Duke wants me me back so badly they are dispatching a coach to convey me. Will be there by evening. So....the drama unfolds. I will keep all y'all posted.

Cheers,

Chris

100 days

100 Days, a time span not graced by the usual cues of Weeks and Months. 10 Days longer than 90 days, the three month quarterly catch-all. 90 days doesn't sound as long as a quarter year, because it's not. A quarter year is 91 1/4 days. Awkward.

Follow over the jump for a look at some other 100 day milestones.

A Letter from the Caregiver on day 92

Soundtrack: The Beatles Two of Us

Dear Friends and Family,

     Remember the song….99 Bottles of Beer on the Wall, take one down, pass it around, 98 bottles of beer on the wall?  Well, we’re looking at only 9 bottles of beer (days) left on the wall, give or take a few. 

We’re homeward bound soon!

Where are we now? What’s next?

     A big part about recovery for Chris is attitude and he gets an A+ for that. However, it’s also about balancing his blood chemistry. He is making steady progress. His levels, though low, have stabilized and he has had no infections for almost 3 months.  Fewer medications are being taken now to help maintain an environment in which his sister Laurie's stem cells can create a new immune system without attacking Chris’s body from the inside out.  It will take several months for his marrow refinery to be working at full tilt producing blood levels within the normal range. 

     During this time, he still has to take precautions when in public places and his contact with people will be limited. He must be extremely careful not to cause inflammation (from the sun or other) so that his new cells don’t go crazy and aggravate his body causing a severe case of graft vs. host disease.  His body’s new immune system is similar to a baby’s and it will take time to build up new immunities. Hopefully in a year’s time, he will be able to receive immunizations to protect him from things like tuberculosis, measles, mumps, whooping cough, etc., etc. So until then his movements are guarded, as are mine, so I don’t bring any hitchhikers home especially from school.

     The initial outpatient clinic phase of his treatment at Duke is nearly over.  That said, we will return to the land of Dukes and Duchesses for frequent checkups.  In addition to the continuing care from the ABMT clinic,  Chris will renew his relationship with the Raab Oncology Clinic in our home territory.  He will need  weekly visits for blood count monitoring, red blood transfusions when needed, and administrations of medicines that will help keep his system balanced as it continues to recovery.

     Soon, very soon, there will be only 1 more bottle of beer on the wall and we can return to our beloved Beaufort. We think of our time in Durham as 99+ days out of 360 towards the treatment time devoted to returning Chris back to normal.  Normal?  Well, we all know that Chris is far from being normal and we like him that way, but the “new normal” is something to be embraced as he recovers to live life again to its fullest.  And there’s no better place to do so than at home.

Homeward bound with love,

Annie

Caretaker extraordinaire who survived Chris’s stem cell transplant.

Join our blog here http://capnsmarrowblog.blogspot.com/

Graft Versus Host Disease (GVHD)

GVHD is the medical shorthand for Graft Versus Host Disease. 

Today a quick, non-geeky look at the phenomenon of GVHD, and how it differs from Transplanted Organ Rejection as seen in the previous cartoons noir post.(click here )

     For those of you just joining us, the procedure I have undergone here at Duke Med is technically an Allogenic Myleoablative Stem Cell Transplant or Bone Marrow Transplant. 

Allogenic: Taken from a donor (as opposed to autogenic, where they take your own cells out, hit you with some chemo, then put your own cells back in, or the syngeneic using stem cells donated by an identical twin)

Myleoablative: High-dose chemotherapy designed to completely wipe out the diseased blood-forming cells in the bone marrow. This chemo can cause side effects, often severe.

SCT: Stem Cell Transplant 

BMT: Bone Marrow Transplant, often used interchangeably with SCT 

As part of this I volunteered to participate in a clinical trial, A Randomized, Multi-Center, Phase III Study of Allogeneic Stem Cell Transplantation Comparing Regimen Intensity in Patients with Myelodysplastic Syndrome or Acute Myeloid Leukemia.  The regimen intensity refers to the pre-transplant chemo. I was randomized into the High Dose group, read about it in this post from March 27th. .

Let's Jump right in for it is pretty fascinating...