Transplant Day 0 (Stem Cell Reinfusion - a.k.a "My New Start")

Well, last night I didn't get a lick of sleep due to the heartburn, abdominal cramping, gas, and constipation, along with the many interruptions from staff throughout the night.  This morning I am feeling very irritable and my patience is short.  I feel like I'm on an emotional rollercoaster as I don't know what is happening with my body and I am over-tired from lack of sleep.  The Dr. said that the steroids are making my emotions go haywire.
I tried eating a little for breakfast (apple juice over ice, a couple spoonfuls of orange sherbet, and a spoonful of applesauce), but became nauseated and stopped.   I'm going to try to force myself to get up and take a shower before my stem cell transplant that is scheduled for 11:00 a.m.  They are going to premedicate me with IV Benadryl and Ativan, so I'm hoping that will help me get a little sleep this afternoon.........

(Later today......)
At around 11:00, my stem cells were wheeled into my room inside a large "Cryofreeze" container filled with liquid nitrogen, where they have been stored since they were harvested on 10 February.  The lab technician pulled the frozen cells from the container, which were followed by a cloud of "liquid nitrogen smoke," and began the washing and thawing process.  The whole thing was pretty amazing.  Present for the reinfusion were myself, my girlfriend, Wendy, Dr. Burt, Dr. Jane, Amy (physician's assistant), the nurse, Esther, the lab technician, and Jeannie, the Chaplain.  They all gathered around my bed and the Chaplain said a blessing and a prayer over me and my stem cells, which was very nice.  I strongly believe in positive, healing energy and the power of prayer.  After the blessing, the nurse hung the bag containing my stem cells, hooked the tubing up to the pump, and connected it to my IV access port.  She then primed the tubing and the infusion of my brand new stem cells into my body, also known as the "rebirthing process", began!

At first, I was a little nervous, not quite sure what to expect, however, it all went quite smoothly.  The most I felt was a little flushing of my face, but otherwise it was uneventful, thankfully. The whole infusion lasted about 15 minutes, during which time the nurse monitored my vital signs, which remained stable throughout.  After the infusion, I finally fell asleep with the help of the Ativan and Benadryl, for about 2 1/2 hours.  Woohoo!!!
I felt refreshed after my nap and the relief I finally received from some of the gastrointestinal medications. 
For dinner, I had vegetable lasagna and chicken noodle soup, which so far, have stayed down and no nausea.  Fingers crossed. 

After dinner, Kim, the other transplant recipient who has been going through the phases of this process on the same schedule as I, asked me to come to the Visitor's Lounge to take pictures.  When I got there, Wendy (my girlfriend) and two of Kim's friends walked in singing "Happy Birthday", carrying an ice cream cake and balloons, which was a thoughtful surprise.  After cutting the cake and taking photos, we had a toast (of sparkling Jasmine tea) to a lifetime of happiness, health, and wellness!  It was a nice way to celebrate our new start in life, with friends and loved ones there to share it with us. 
After returning to my room, I skyped with my two precious daughters, who always uplift me and give me motivation.  Getting to see their smiling faces makes me feel better.

I will be getting ready for bed soon, and Wendy and I are both looking forward to a restful night's sleep, since the chemotherapy and Rabbit-ATG are done now.  Although, the doctors say I can still expect to feel crappy over the next few days, until the chemo is completely out of my system, I'm doing my best to remain positive.  I don't expect too many changes if all goes well over the next few days, as at this point, we are mostly waiting for the stem cells to multiply and engraft in my body, where they replace destroyed tissue and resume my normal blood cell production.

Transplant Day -1

This morning I did not eat much for breakfast.  I just don't have an appetite right now.  Today is Sunday, a day of rest.  No chemotherapy today, although I will still get the Rabbit-ATG tonight. 
My best friend, Mike, who I ironically met in Chicago 20 years ago while attending Navy "A" School, stopped by for a visit today. He dropped off some laundry he was kind enough to do for me.  His upbeat personality and witty sense of humor gave me some comic relief and helped distract me from what I'm going through. 
After he left, I ate some pizza, which seemed to go down okay. 
This evening, I am having lots of terrible heartburn (Dr. said it is from the Cytoxan, the chemotherapy), gas, bloating, and constipation.  All of these make for much discomfort and I am having a very difficult time falling asleep.  I have the head of my bed elevated to help with the gastric acid, but it's not making a whole lot of difference.  The IV fluids I was being given for hydration have been discontinued, so I am trying to drink lots of water, however, it's hard to keep it down with the nausea on top of everything else. 
'Working on trying to relax and get some sleep before the big day tomorrow.

Transplant Day -2

I started the morning off with a walk around the unit, socializing with some of the other patients.  I didn't have much of an appetite, so I skipped breakfast.  Later in the morning, one of Dr. Burt's previous stem cell patients for Scleroderma, who lives here in Chicago, stopped by to share her experience with me.  She had had extreme skin tightness and severe contractures of her fingers, joint stiffness and pain, along with shortness of breath.  She had her transplant five years ago and reported having tremendous success.  All of her symptoms have been reversed fully, except for some slight tendon contractures in her fingers, which she is still working out through occupational therapy.  She said she is leading a very active lifestyle and feeling great.  I found her visit to be very encouraging and uplifting. 

After lunch, I became nauseated, so the nurse gave me some Compazine.  Within minutes, I began feeling incredibly anxious and needed to jump up and do a few laps around the hall in an attempt an to "burn off the adrenaline."  It was a little bit of a scare as I didn't know what was happening to me.  When the nurse realized I was having a reaction to the medication, she quickly gave me some Ativan, which calmed me down and knocked me out for a little while.  When I awoke, I ate some soup and chocolate chip ice cream, however, unfortunately my stomach was unwilling to cooperate.  I vomited once again and felt an immediate sense of relief. 

At 8:30pm I received my last dose of chemotherapy (YES!!!) along with Benadryl, which pretty much knocked me out for the next four hours.

Transplant Day -3

This morning started off pretty well, except that my lab work indicated I was low in Magnesium, Phosphate, and Potassium, more than likely caused by the diuretics. I was given these electrolytes intravenously to help bring these levels back up.
I skyped with my friend, Gary, in Italy, and socialized with some other patients, exchanging our experiences. Meeting and hearing other patients' stories reminds me just how important it is to be grateful for everything we have, especially the love of family and friends. I was able to eat a good breakfast, but lost my appetite before lunch as the nausea set in. I felt fatigued and nauseous all afternoon, but forced down a big burrito, in hopes that it would stay down, which turned out to be a big mistake. After churning in my stomach for a couple of hours, it finally made its way back up, which gave me great relief.
The highlights of my evening were skyping with my two beautiful daughters who always cheer me up and give me inspiration, followed by a hot foot bath with mineral salts and essential oils of peppermint and lavender, before an awesome foot massage given by my private nurse and loving girlfriend, Wendy. :)
I was able to keep down some soup and crackers, along with orange sherbet and ginger ale for dinner. Then, I started my third round of chemotherapy at 8:00 pm. It is now almost midnight and I'm hoping to get some decent sleep after my diuretic wears off. It usually keeps me up urinating for a couple of hours.
Three more days until transplant!!!

Transplant Day -4

I just completed my second round of chemotherapy tonight and I'm not feeling too bad. The only side effects I experienced were a metallic taste in my mouth after chemotherapy and a slight headache earlier today that subsided after I took some Tylenol with codeine. I receive my chemotherapy at 8:00pm everyday due to delays in getting my blood work back from the lab yesterday. My chemotherapy lasts approximately 2 hours and then is followed by the rabbit ATG that runs for 10 hours. The downside to receiving the chemotherapy late is I don't get much sleep at night because I have to flush my bladder frequently to prevent the chemotherapy from crystalizing in my bladder and causing bleeding.

The staff here has been absolutely fantastic in providing quality care. My girlfriend Wendy is also staying in the room with me and has provided great moral support. Wendy departs on 6 March to head back to work in Hawaii. My brother will arrive on 5 March and stay with me until I'm discharged.

4 more days until the transplant!!

Transplant Day -5

I was severely fatigued 2-3 days after the stem cell harvest on 10 Feb, but I started feeling much better after day 5 back in Hawaii. My hair began falling out on 16 Feb (17 days after mobilization chemo) and I decided to shave bald before departing Hawaii, so I wouldn't have to deal with the hair in the hospital.

I returned to Chicago on 21 Feb and reported to Northwestern on 22 Feb to have a Peripherally Inserted Central Catheter (PICC) line inserted. My nurses will use the PICC line to administer my chemotherapy, misc meds, fluids and draw blood without having to stick me multiple times with a needle. The PICC line insertion was pretty painless and only took about 30 minutes once an operating room became available. More details on a PICC line can be found at http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter.

I was admitted to the 15th floor of the Prentice Women's Hospital at 0730am today. The 15th and 16th floors of the Prentice building are designed with special filtration systems to lower the risk of infection in immunosuppressed patients. Patients on these floors receive chemotherapy as part of an auto-immune stem cell transplant or to treat blood cancers.

Once my labs come back and my pre-chemotherapy meds are administered, I'll receive 4 grams of cyclophosphamide chemo, followed by anti-thymocyte immune globulin (a.k.a. Rabbit ATG) to further aid in the destruction of my immune system T-cells. This process will be repeated over the next 4 days to wipe out my immune system and then my harvested stem cells will be reinfused into me on 28 Feb. After stem cell reinfusion, the immune system rebuilding and recovery process begins.

Additional info regarding rabbit ATG and cyclophosphamide can be found at http://en.wikipedia.org/wiki/Anti-thymocyte_globulin and http://en.wikipedia.org/wiki/Cyclophosphamide, respectively.

Stem Cell Harvest

The past several days since my previous post have been pretty much uneventful.  I followed the doctor's mobilization instructions (explained in previous posts) and remained bunkered down in the hotel due to the severe cold weather.  I did experience intense bone pain Tuesday evening that kept me up most of the night, but after adjusting my pain meds on Wednesday I was able to control the pain and get some rest that evening.  The bone pain is a sign that the bone marrow is "revving" up (working overtime) – in my case to produce new white blood cells.  My lab work indicated I was probably Neutropenic for a short period on Tuesday morning and then my white blood cell count started its recovery later in the day when I started to experience the pain.

At 08:30am I reported to Northwestern to have a vascular catheter placed in my neck to facilitate the large volume of blood cycled through the stem cell collection machine during the aphereris process.  The process of inserting the catheter consists mostly of prep work and usually takes approx 30 minutes.  However, due to hospital delays, I didn't get seen by the doctor until approx 11:00am and the catheter was completed around 11:30am. 

After the catheter was complete I ate lunch and proceeded to the blood center to begin the stem cell collection process.  Once I arrived at the blood center they nurse drew my blood and told me to come back for the results in 90 minutes.   When I returned the nurse told me my white blood cell count looked very good and hooked me up to the stem cell collection machine (see picture at bottom of blog).  Once hooked up, it took approx 3 hours to obtain a sufficient number of cells.  The amount of time a person is hooked up to the machine varies based on a person’s weight and the number of stem cells required for their treatment regimen.  The minimum number of stem cells needed for my treatment regimen is 2 million.  During the collection I sat in a recliner and tolerated the procedure fairly well.  I felt an increase in fatigue, minor tingling in my extremities and felt a little cold throughout the process. 

My collection finished at approx 4:45pm and my stem cells were sent to the lab to ensure a sufficient number of stem cells were collected before they removed the catheter.  At approx 6:30pm the results were back and I had a whopping 20 million stem cells in the bag!  It took the nurse approx 10 minutes to remove the catheter and after my vital signs were checked I was cleared to return to the hotel.

Overall it has been a very successful stem cell mobilization & harvest phase.  I'll rest tomorrow and head back to Hawaii on Saturday morning.  The objective over the next 10 days is to stay healthy, get sufficient rest and prepare myself mentally for the transplant. 

Next update will occur during the transplant phase which begins on 23 February. 

Thanks for all the support and prayers!

Mobilization Day 5

I was discharged from the hospital on Tuesday around 4:00pm during the blizzard and made the short walk across Michigan Ave. back to the Omni hotel.  Overall, I have felt pretty good since leaving the hospital, just slightly more fatigued than usual.

After resting most of the day on Wednesday, I decided to venture out to the Field museum on Thursday.  The last time I’d been to the Field museum was after my boot camp graduation from Naval Training Center Great Lakes in 1990, but the museum lacked Sue during my last visit – the largest, most complete, and best preserved Tyrannosaurus rex ever discovered which was unveiled in May 2000.  It was well worth the trip and it felt good to walk around the museum for a couple hours. 

Today I returned to Northwestern at 9:00am and had my blood work and veins checked.  Everything looked good, WBC was 4.1 and platelets were around 200.  My blood work will be checked again on Monday morning and I’ll most likely be neutropenic on Monday/Tuesday of next week.  To lessen chance of infection, I’ll avoid large crowds and start Ciprofloxacin (antibiotic) and Fluconazole (antifungal) tomorrow.

The primary objective over the next several days is to ensure a sufficient number of stem cells are mobilized from my bone marrow to my peripheral blood using a growth factor called Neupogen.  Beginning tomorrow, I’ll administer two shots of Neupogen to myself daily until my stem harvest on 10 February.