Day -5 to -2 Lots of Meds, and Finally Some Golf

Hello,

Thank you all for the well wishes, prayers, posts, emails and thoughts of strength and hope over the past few days!

Getting ready to inhale

Friday, Day -5 was a busy one.  I graduated from my radiation treatment with the two final treatments done by 1pm.  At 3pm I had to do a lung treatment that coated my lungs with an inhaled med that will protect me from pneumonia over the next few weeks.  All in all I have tolerated all the treatments well with minor discomfort (nausea, sore throat, and hiccups) and I am feeling strong. 

On Saturday, Day -4, I received my high dose of chemotherapy (VP16 or etoposide) over a 5 hour period.  Spent most of the time in bed asleep since I also get some benadryl and demerol to prevent reactions. 

With the radiation and VP16 treatments completed, my old immune system and bone marrow is on it's way out, literally obliterated.  As of today, my white counts are all but non-existent and I will be getting red cell and platelet transfusions regularly, until my new marrow kicks in after transplant.

After the VP16 completed, I began receiving Rabbit Anti-thymocyte Globulin (RATG) which is a strong immunosuppressive med that prevents my T-Cells from attacking the new donor cells when I get them.  I just get one dose of the chemo, and I will get 4 doses of the RATG over 4 days.  On day -1 I will also receive another immunosuppresive med called Tacrolimus which I will be a more long term med I will be on to keep my T-Cells in check in addition to keeping my new immune system in check from attacking my own body as a foreign invader.

I will know tomorrow whether I get my stem cell transplant on Wednesday or Thursday, but I will keep everyone posted.





Really, a good view of the 15th fairway and 16th tee

 Friday, I did get to see Tiger Wood's group hitting from the 15th fairway and teeing it up at the 16th tee box from a nice vantage point on the 4th floor of the hospital.  Thank you Tod and Tiffany for letting me borrow your binoculars!!!Saturday I mostly watched on TV since I was in and out all day.  Theresa stayed with me Saturday night which was nice, but the poor thing did not get much rest with all the nurses coming in and out all night.  We had a nice breakfast together before she went home to the girls.  Thank you my Princess!  I love you with all my heart!

My brother Mike and nephew Max came by just before Theresa left and we watched the golf tournament and played some cards.  Yes, I have a card table and cards in my room!  Thank you Max and Bro for your visit, I had fun.

View from my room (Farmer's blimp in sky)

I am getting walks in at least twice a day to stay strong for the next few weeks.

Lunch and dinner didn't work out with all the nausea I was having, but I did power down a few bananas and some apple sauce.  Got more RATG and then my daily dose of AmphoB with demerol which pretty much takes me out for the night.  Still getting AmphoB daily until my new immune system kicks in after transplant to keep Valley Fever at bay.

Thank you all for continuing to check in and send prayers my way!

Love,
John

Day -7 and - 6 Busy...where's Tiger?

Hello!

Thank you for all the kind posts on Day -8!!!  Day -7 and -6 (Weds/Thurs) were busy ones!

The pace of the day is pretty quick with 3 TBI treatments per day.  The noon treatment included an extra treatment of my ribs since during most of the treatments they are blocked by the led castings protecting my lungs. 
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Linear Accelerator

Me by the "board"



I have had many questions about how much radiation I am getting and what it feels like.  First, here are a couple of pics (thank you honey!) of the machine that delivers the radiation (linear accelerator) and me standing by the board I stand up on during treatment.












A standard X-Ray usually delivers about 1.4 milliGrays (or .0014 Grays) of radiation which is harmless.  5.0 Grays delivered at once can cause destruction of vital organs and death.  Each treatment I get (3 per day or fractionated) deliver 1.2 Grays per treatment, with 4 hours in between each treatment.  I am getting a total of 11 treatments for a total of 13.2 Grays over a 4 day period of fractionated treatments that keeps me safe but destroys the Leukemia and bone marrow.

The treatments usually last about 10-15 minutes, but I made a music CD to play in the treatment room to pass the time.  I don't feel anything, but get a little tired standing in one position for a long time.  Wiggling my fingers and toes helps.

I just started feeling some nausea today and some fatigue due to the radiation.  It looks like I have a mild sunburn/suntan, but I have been kept well hydrated with IV fluids and lots of water.

Theresa came by today and brought the BMT staff lunch.  My sister-in-law Laura and my mother-in-law Loretta came by for a quick visit as well.  My Grandma Joyce and Aunt Debbie came by to say hi after an appointment, so it was nice to see some visitors. 

Theresa, me and it seems the whole hospital staff were looking for Tiger today, but since he played the North Course he was no where to be seen from the hospital.  I have a beautiful view of the ocean and South Course with a small window through trees of the 9th fairway, 15th green and 16th tee box.

I may get a chance to check out the tournament from an empty room in one of the higher floors tomorrow.

My transplant day is scheduled for February 2nd, however, it may be on February 3rd if the harvesting center has to collect from the donor over two days.  I will know for sure on February 1st what the plan is.

I am almost 1/3rd of the way up the summit and I am climbing strong!

God bless you all and thank you for all the support and prayers!

Love,
John

Day -8 Busy Day

Hello and thank you for all your posts for Day -9!

The posts were a nice boost to my day today.  Day -8 started out with an amazing view from my room of the of the sunrise lighting up the sky.  I was blessed to get a double bed room (without a roommate) with a nice view of the ocean and Torrey Pines South where the Farmers Open is being played this week. 

Around 7:30am I was taken down to radiation oncology for my first radiation treatment.  In order to knock out my old bone marrow.  Since bone marrow is in every bone in the body, my entire body is being irradiated for 10-15 minutes, three times a day for 3 days, then 2 times on Friday.  The radonc staff makes sure my lungs and other vital organs are protected as much as is possible. 

After my first TBI treatment I was sent to the operating room to get a Groshong catheter in my chest that will be used for my stem cell transplant next week.  It was a short procedure and I was able get back to my room for a snack before I went back down to radonc for my second TBI treatment for the day.  The third treatment was in the afternoon.

I received a blood transfusion today and yesterday and I have started receiving daily AmphoB infusions to prevent any flare ups of Valley Fever.

Theresa, my Mom and the girls came by for dinner, homework, and we watched a bit of the State of the Union Address too.  Theresa brought me a table to put in my room so we can sit together, it is great! 

Love you all, and thank you again for all the wonderful day -9 posts!

John

Day -9 Pre Stem Cell Transplant

Welcome back everyone!  Thank you for joining me again on this part of my journey.  My previous blog chronicled the days through my fight to get my Acute Myeloid Leukemia (AML) into remission.  Last you heard from me I had gotten in to remission, however, it was brief and my leukemia was stubborn and decided to stick around in 20-30% of my marrow.  Between December and now, I have been able to enjoy family, friends and getting back to work.

Today is Day -9 to stem cell transplant.  When I get the stem cells it will be Day 0, and then we will get into positive territory!  Starting tomorrow I will be getting Total Body Irradiation (TBI) three times a day for 3 days, then twice on Friday.  On Saturday I get my chemotherapy drug called Etopiside (or VP16).  This one-two punch will obliterate my diseased marrow, including the leukemia and MDS.  I will then get anti-rejection drugs to get me ready for getting my new cells on Wednesday February 2nd.

Thank you all again for your love and support!
John