6 Months Old, or is it New?

        It has been quite a while since I posted, some due to computer problems, some due to system problems, my system that is. Here is an update.

               On or about Friday, October 4th I was 185 days post stem cell transplant.  Aside from two hospitalizations for infections since coming home in July, the medicos are satisfied with my progress.  I am feeling a bit frustrated that my blood type has not yet switched to the B+ of my donor/sister, and that I am still transfusion dependent, but I am told this is not that unusual. We are taking steps to force the blood type switch: I am now off the two immunosuppresants (tacrolimus and prednisone) and we  are experimenting with Rituxin.  It is also a possibility of getting another shot of Laurie's Leukeocytes. 

     As it is now, I have many of the same characteristics of a 6 month old -  virtually no acquired immune system, nor any of the inoculations for childhood diseases, and to varying extents sleep/nap patterns, diet, and diaper usage. But I am walking a little further each day, and have been repeatedly told I am going to rest, not exercise myself back to health.  Mask and gloves on the rare occasions I venture out in public, still observing quarantine, no travel, etc.

Update on my father:

       Also on Friday morning, my father passed away, in his own bed, with my sister in attendance. Here is a facebook posting from Paul DeGeata, ( some of you may know him as the Capt. of The Victory Chimes)  the nephew of Nick, one of Bud's Army buddies...

My uncle Nick emailed me to tell me his close buddy, Bud Siegel  passed away at 6:30 this morning in Long Island, NY. 

I got to know Bud over the last 20 years. Sometimes people slip away unnoticed. I hope you'll indulge me my memories because he's a man worthy of notice. 

My uncle Nick is 95. Bud was a few years older. The pair made Airborne History making America's first combat parachute drop with the 509th Parachute Infantry in North Africa in 1942. They fought across North Africa, Jumped in Avalino where Bud had to pretend to be a patient from an insane asylum as he was led by an Italian monk, through a German Patrol looking for paratroopers; they landed at Anzio where their outfit went through its numbers three times because of casualties. With Darby's Rangers, the 509 took a mountain (Venafro) the Germans held in 24 hours  that the 45th Division had been trying to take for a month.  

The 509 led the Airborne Invasion of Southern France. Bud, a Captain in A Company at the time, drew up the jump list so he was the first paratrooper out of the lead plane to start the invasion of Southern France. They fought in the French Maritimes and were called to Belgium during the Battle of the Bulge. They held a very important cross roads in Belgium during the Battle of the Bulge. Bud and his jeep driver were ambushed bringing entrenching tools to his company so they could dig in the frozen ground. He  was wounded and captured by SS Troopers. He understood enough German to know that the SS sergeant told the soldier guarding them to take them behind a snow bank and shoot them. Just then an American tank rolled up and he and his driver had just enough time to escape. Years back, Bud gave me a brass whistle he was wearing that stopped a German machine gun bullet fired by that SS patrol that ambushed his jeep and blew it up with a Panzefaust, he said the whistle probably saved his life.  While Bud was recuperating from his wounds, my  Uncle Nick was one of 6 of the original troopers in the outfit who was still standing after the Bulge. There only a 58 others out of a Battalion that usually consisted of more than  650 men.

Both men always said they were living life on borrowed time since WWII. Both lived worthy lives and had long distinguished careers in uniform, Bud a cop, Nick a firefighter. Both worked with disadvantaged kids in their retirement years. The pair used to entertain their outfit with songs and poetry at 509 Reunions and Airborne Banquets up until about two years ago.

To say they were part of the Greatest generation is an understatement. They are two of the best men I've ever met. I feel for my uncle Nick today, very few 509ers are left. RIP Bud, it was a great honor knowing a man like you.

-Paul DeGaeta

And Back Home Again

     Annie and I were able to drive home on Monday, after another spell at Duke, both in and out-patient.
Tests, Labs, and exams  showed infections of unknown origin. The treatment was antibiotics and anti fungals.
This stay at Duke was another great educational opportunity for us both, as we struggle to understand the terminology and conditons that our Medicos have spent years studying.  At least we now feel that we can pose relevant questions.

      This was a bit of a close call, with the high fever.  The lesson is to wear a mask, even if I am alone on the beach until my immune system has a chance to start acquiring a library of all the stuff out there that a normal immune system deals with every day.

    I am feeling lucid enough to trust posting some of the Blog entries I have been working on,
stay tuned.


C

Back at Duke

     Last Monday Anne and I were walking our mile on Radio Island Beach. At 11:00pm,  100.4 fever sent us to Carteret General  ER where we were kept until the fever broke, and sent home before we"caught something really bad in the ER".  0800 the following am found us at the Raab Clinic where they stashed us in a small exam room, ran labs and got a dialog going with Duke.    IV antibiotics were started for suspected possible pneumonia and staph infection on plastic catheter tubing.

     Admission to Carteret General was arranged, and I moved across the street and got settled in. After Hickman catheter was removed ( with the tip saved for biopsy ) and an  IV was started for meds and blood products.Chest x-ray showed fluid build up in and around lungs.

     And so on Friday the 8th of August I set off for Duke again, strapped down in the back of the Ambulance. Blew the inside left rear tire coming into Kinston.  The Medicos called around and there was a Dukemobile just up the road in Smithville, and I was trans-shipped right outside the McDonalds Drive-Thru there in Kinston.  No one laughed when I asked if Fries came with it.

     Got to Duke and the Night Doc said he had never see such complete and thorough documentation and set of medical records arrive with a transfer from "outside".  It gave me a chance to brag on the Raab Clinic, and CGH.

     So I have been here for 3 nights, and Anne has been up for two, staying with Robin and Willie. I have had  more Chest X-rays, a CT Scan, multiple labs,  tests, a new PIC line ( double Lumen )  installed ( very cool, got watch the positioning on ultrasound screen. The Guidance system also has a tiny gps in it, an works like the rigs for running underground lines, knowing where they will pop out it the ground!)

     I will be up here for a while, until we can get me balanced again and the risks of congestive heart failure and fluid filled lungs are sorted out.    Stay tuned.

Chris

Back Home

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.

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