Saturday, December 31, 2016

Autologous Stem Cell Transplant

I am fixin' to go through an Autologous stem cell transplant tomorrow, and thought I'd do my best to provide a sitrep during the event. I may feel too crappy to write, in which case this will be a noble but futile effort, but I'll give it a go.

Saturday, Sunday and this morning, I was at Emory getting a 3 part infusion of Kepivance meant to prevent mouth sores after the injection of chemo tomorrow. I feel like a steaming pile of feces right now, but made it to work anyway so I can save my few remaining hours of sick time.

Anyway, 0730 tomorrow, I muster at Radiology for a 0900 procedure to place a subclavian catheter (port) beneath my collar bone, and then will be admitted into Emory. Tomorrow afternoon is the 1 shot of Malphalan, and that's when the fun begins.

Tomorrow is called 'day zero minus 2'. 'Day zero minus 1' is a simple day of rest. 'Day zero' is when my stem cells (4 million of the little beasties) will be reinjected back into my body, and I will standby to standby by for the next 12 days.

On the bright side, my wife is flying out to be here from the 18th-23rd, and all things being equal, I might be able to go home during that period. Then my buddy Matt will be flying in from Phoenix to take over for her on the 23rd-30th. I'm hoping to be back to work by the 31st.

There is no trace of Multiple Myeloma in my family tree, and I don't meet the typical group it most commonly visits. But because it is closely related to Leukemia and Lymphoma, I fully believe (and so does my Oncologist), that the cause was excessive exposure to carcinogens; specifically benzene found in JP4, JP5, Naphtha, Toluene, and Methyl Ethyl Ketone, chemicals I commonly had my meat hooks in while serving in the USN. First VA claim was denied, so I'm waiting appeal with further proof as well as direction from my oncologist was submitted.

There's been a few cases of folks remaining cancer free after this procedure, though in no way is that guaranteed, so that's what my friends and family are hoping and praying for.

Finally, I set the date for this post in the future to keep it on top to provide a point of reference for the subsequent posts. Thanks for reading.

Tuesday, October 11, 2016

Day Five

Well, I haven't posted for the last few days, here's why.

Day 2 was not a significant day in that nothing really changed much.

Day 3, the bottom started to drop out and I descended into the proverbial basement where I was met with severe nausea, headaches and insomnia. Sleeping is an illusive and rare treat these days.

Blood counts were on schedule, and signs and symptoms have all been expected. The Doctor has repeatedly said I am still the most boring patient on the floor... which is a good thing.

Day 4, I finally hit the floor. White blood cell counts reached 0.7, and Platelets dropped out of the normal range. Up to day three, I've been able to take a walk outside around the campus of Emory, but yesterday, I was restricted to the floor. On my floor, 21 laps equals 1 mile, and I've been diligent to get 1 1/2 miles each day, but yesterday, I only got 1/2 mile before feeling the the scraped off dog crap on the edge of the curb.

Last night, I took a mild sleep aid, and it may have worked if my sleep hadn't been continually interrupted.

The big challenge in not gagging on the thick saliva being generated because of the drugs given to me prior to the procedure. My appetite has diminished to next to nothing, and since yesterday, I have lost 13lbs in one week. Beats the hell out of nutria-systems so look for Maria Osmond to sign up soon.

Day 5.
Here we are, awake at 0400 because, well sleep only visits occasionally. 1 cup of coffee and a small cup of apple sauce, and I hit the halls. 21 laps before 8 and my first mile is done. During my walk, my nurse for the day handed me my blood work from last night. White cells are at 0.1 and Platelets have continued to drop, so outside human contact is verboten.

I have found my energy level is best first thing in the morning, and I seem to be able to stomach a small bowl of oatmeal with brown sugar, 2 pieces of whit toast and a small container of grapes.

I haven't been able to get much down after breakfast, so the docs have authorized Insure that provides all the nutrients, without a large volume which helps.

If I can motivate my self today, I'll post a little more this afternoon.

Friday, October 7, 2016

Day One with the New Old me

Yesterday I had 4 million of my stem cells reinfected directly into my jugular via the Tri-fusion catheter I spoke of earlier. After shaking off the effects of benadryl and a muscle relaxer, I was able to walk another 1/2 mile after the 1st mile I did before the transplant.

This morning, I woke and knocked off 1/2 mile before breakfast, and just finished another mile.

The reason for walking is the circulation with help the stem cells find their home and possibly speed up the engrafting process, but the immediate effects are the reduction of the negative side affects like nausea, vomiting, anxiety, etc. so I'm walking my butt off as long as my energy level will sustain this activity. According to the progress chart, tomorrow is the day I begin to descend into the "basement" of this process where the side effects are more likely, and will last for about a week or so before engrafting begins. I shaved my head today as my hair will be departing in the next day or so I can control where the hair falls. A quick sweep after the shave, and I'm back in boot camp circa 1979.

Food still tastes like 2 week old cat turds, so fresh fruits and veggies remain high on my desirable list.

Reading and watching storm coverage of Hurricane Matthew keeps me occupied. Visitors are welcome... just stop by to chat for a bit.

Thursday, October 6, 2016

Day zero, my new birthday

0500 wake up when the techs began to fill ice bags for their patients. The kitchen is directly across from my room.

One cup of Peet's french Roast and some OJ, I settled in and wrote the recap for yesterday.

0630 I met my new day nurse Ashlyn. Newly wed and one on the way, she is quite a character.

Ordered breakfast: Oatmeal, Soy Milk, grapes, sliced peaches and prune juice.

0800 started walking my laps, and felt so good, I walked 21 that equals 1 mile.

After my walk, I was gonna shower, but the transplant procedure was eminent, so nurse Ashlyn started fluids and the preliminary prophylactic drugs.

1000 Benadryl and Adivan caused drowsiness but I perked up when I was reunited with my harvested cells

Soon the cells began to reinter my system, and I seemed to struggle a bit with shortness of breath, so Nurse Ashlyn slowed the flow which helped.

I would have fallen asleep during the infusion, but another nurse in training was quite talkative with my nurse.

The infusion took no longer than an hour to infuse 4million stem cells. The nurses left and I slept for an hour.

1330 Lunch ordered risky choice of shepard's pie and green beans with orange sherbet.

Afternoon shower, and another dressing replacement, some veggie soup and saltines for dinner, and another 10 laps to give me a mile and a half today.

Walking aids in circulation and oxygenation of muscle tissue and will help my Stem cells find their home in my bone marrow quicker.

Day Zero minus 1

5 Oct. 2016Today was a day of rest with little fun features not included on the brochure.More meds added to the regimen, all prophylactic applications, the special one being a blood thinner administered subcutaneously... in my belly. One shot every day.The reason for the blood thinner is simple: as the chemo kills the white blood cells and platelets, it is also releasing gunk into my vascular system that can create clots which would be a bad thing.I walked 11 laps (1/2 mile), 10 laps short of the required. I met another AU fan who is a couple days ahead of me in the cycle. clearly a nascar fan, he was walking in the correct direction while I was going against traffic.My appetite began to diminish today, in part because of the Kapivance coating my taste buds, but it also camouflages the flavor of hospital food which ain't such a bad thing. I'm just focusing now on fresh fruits and veggies because they've yet to screw up grapes and lettuce.Met my new night nurse, Tasha. Asking her where she was from she said everywhere because she was a military brat, which led to the next question, "what branch?" "Air Force" she replied. "Ahh", I said. "I was in the Navy but was stationed on an Air Force base in Okinawa" to which she replied "that is where I was born!" "What year" I asked. "1988." "I was stationed there from '79-'82."I received a call from my Men's group leader Bobby telling me there were several men from many groups willing to take 8 hour shifts to insure coverage after my initial discharge. Amazing to be associated with such men of character. Their willingness to participate with me going through this ordeal reminds me of a few verses in the Bible:
James 2:18, 26
 18 Now someone may argue, “Some people have faith; others have good deeds.” But I say, “How can you show me your faith if you don’t have good deeds? I will show you my faith by my good deeds.”
26 Just as the body is dead without breath, so also faith is dead without good works.
Matthew 25:34-40
34 “Then the King will say to those on his right, ‘Come, you who are blessed by my Father, inherit the Kingdom prepared for you from the creation of the world. 35 For I was hungry, and you fed me. I was thirsty, and you gave me a drink. I was a stranger, and you invited me into your home. 36 I was naked, and you gave me clothing. I was sick, and you cared for me. I was in prison, and you visited me.’37 “Then these righteous ones will reply, ‘Lord, when did we ever see you hungry and feed you? Or thirsty and give you something to drink? 38 Or a stranger and show you hospitality? Or naked and give you clothing? 39 When did we ever see you sick or in prison and visit you?’40 “And the King will say, ‘I tell you the truth, when you did it to one of the least of these my brothers and sisters, you were doing it to me!’

Additionally, I received a couple of texts from my boss Ken, just checking in and a call from James touching bases. These two men have also put their faith to work, and I'm honored to be associated with them.The rest of the day was 'chill.'

Lastly, my neighbors accepting the burden of caring for our chickens and the cat.

Meeting the needs of others is love expressed as a verb.

Wednesday, October 5, 2016

Day zero minus 2

Yesterday was a difficult one, and I didn't get settled until about 1AM this morning, so today's entry is a recap of yesterday's events.

October 4th, 2016-
0441 wakeup call was preceded by little sleep. Nothing by mouth (NPO), past midnight, but it proved its worth though, but more on that later.

I woke with a reaction to the infusions of Kepivance that presented as a pretty severe headache, and swollen face that made me look like an Ewok. Showered and dressed, I made my way out to feed and water the chickens, fed Riley the behemoth cat, and loaded my belongings in the truck for the 41 mile drive to Emory University Hospital in Atlanta.

0645- Parking was easy, but a GPS with pin point accuracy is required to navigate the campus hospital. After being directed to a myriad of incorrect locations, I finally heard some good information, and made my way to Radiology on the first floor where my catheter would be placed.

0715- After filling out the cursory registration paperwork, I spent my waiting room time hopelessly staring at the coffee machine across the room that held the magic elixir for my headache. No joy.

0800- With luggage in tow, I followed a tech to the Radiology pre/post op area who commented on my Harley teeshirt. She told me after a recent ride with a friend, she fell in love with motorcycles, and bought a scooter to begin the learning process :).

Shedding my street clothes for a spectacular hospital gown that was clearly designed by a woman (open in the back, really?!), I met my prep nurse Florina. Her job was to take vitals and start an IV on my wrist. Her accent indicated an Eastern European origin, so when I inquired, she told me to guess. My first pass was the Ukraine, but then I corrected it to Romania... Nailed it! So we had a conversation about my visit to Romania in 1976. Fun. The Doctor who came in to discuss the catheter placement procedure also had an Eastern European accent, and of course, I again inquired. Doc Anna is from Russia. (This visit is turning out to be a cornucopia of international healthcare professionals).

1000- Two cool male nurses rolled me into the operating room (OR) and prepped me for the surgery to insert a Trifusion catheter  into my chest. After informing them of the continuing and debilitating headache, they assured me they would give me a pain reliever. The med they first injected into my IV was a fun little narcotic called Fentanyl. but within seconds, I became nauseated and began to vomit, though because I hadn't had anything to eat or drink since midnight, my stomach was completely empty. (Dry heaves suck, by the way, and now I know why they require NPO). Fortunately, the guys were prepared and followed the Fentanyl with something like Narcan that just as quickly neutralized the adverse affects. (Note to self, you're allergic to Fentanyl!)

Once stable, they administered a mild sedation, and the Doctor entered the room from a secret door (he just appeared). A quick shave and a couple shots of local anesthesia in my chest, and he proceeded to slice and dice me better than any Ronco's Veg-o-matic could. One and done, they returned me to the pre/post-op Radiology group where I dozed between sips of ginger ale and tomato soup for several hours, finally without a headache.

1500- My good friend John stopped by and kept me entertained with stories and fellowship for the next few hours until I was finally assigned a room (E722 if you wanna stop by or send gifts, lol). Don't come if you or somebody close to you is sick though, 'cause they won't even let you get off the elevator. While in post op I also met Dr. Langston and NP Naomi, who both seemed ready to administer all necessary care.

1730- Transported to my room by Maria whose hubby is finishing his preliminary Marine Corps training at Camp Pendleton, she was Johnny-on-the-spot to thank me for my military service. OORAH!

After arriving to my own personal Kasbah of transplant facilities, I met my day nurse Kim. Fairly new to the game, she is a young gal from Michigan who is highly motivated, diligent and full of energy. My confidence in her is high.

1800- Kim passed me off to my night nurse Lori who is a seasoned professional with a great deal of experience, but also possesses a gentle spirit that was very welcome after the first half of the day. She made me feel like she was my advocate.

1835- I was finally able to order dinner, meat loaf with brown gravy, mashed potatoes and broccoli, Ginger ale and some orange sherbet. Dinner arrived at 1950 about the temperature of the floor, but I got some food in, finally.

Frustrated that the chemo wouldn't be ready until 2230 (10:30pm), I decided to catch a nap before the infusion because I discovered I would be required to chew on ice during the infusion (1/2 hr) and continue for 2 hours after to prevent blistering in my mouth. But napping proved to be impossible because I was constantly being interrupted by various techs and nurses wanting to fulfill their procedural requirements and check my catheter dressing as it was oozing a bit.

Also, though the swelling in my face had diminished, the low grade fever reached 100.8º, so antibiotics were on the menu.

2200- A couple of preliminary infusions to prevent nausea (very welcome after the morning I had) as well as meds by mouth dressed me for the big inning less than an hour away.

When Nurse Lori hooked me up to the bag of chemo, she was wearing full hazmat gear that was a bit unsettling. Knowing she was protecting herself from contacting what she was about to pump into my vascular system created an irony I have come to terms with. No problems during the infusion, and I even got a popsicle to chew on along with the ice that tasted "fuzzy."

Finally at 0100, the chemo was on board and all requisite ice chewed. The only thing left to do was change the dressing on the Trifusion catheter, and then sleep; mostly uninterrupted until 0500 this morning. Night sweats indicated the fever broke, and nurse Lori provided clean linens and another gown (designed by women)!

All in all, I survived the day with good medical care, many prayers from family and friends, and phone calls and face times with my beautiful wife. She even got to meet Lori, though Lori was wearing a surgical mask and I called her Cathy... no idea why.

I'll pick up from here in my next entry. Thanks for reading.

Monday, November 16, 2015

Prepare yourself for battle; The enemy is at the gate.

What happened in Paris this last weekend is on the doorstep of the United States, and President Obama has just unlocked the door.

It is time for every American to arm himself and prepare to defend his family and community.

Those who choose to hesitate will be responsible for the mayhem that follows.

Lock and Load, Patriot. The threat is eminent, and the time is now.