Day +14 Home

Yesterday (day +13) I was discharged from outpatient service and today (Day +14) I actually returned home. I've been in Omaha for exactly one month from start to finish. I could have returned home yesterday but had some unfinished business at the local clothing stores in Omaha so I delayed my return by one day.

Day +12 Trip to the Mall

Today I'm officially an outpatient. The first thing I did was go and check out the malls in the metropolitan Omaha area. Total time spent walking around: 4 hours. Total money spent: $0.00. The only reason I mention this is the demonstrate how quickly my strength has returned.

Day +11 Discharge

Today my WBCs jumped to 3.6 and the doctors confirmed that I'm being discharged today. All my symptoms have resolved themselves and I feel like practically a new man. I'm still a little sluggish and fatigued but that will change in time. The nurses expect me to be discharged by noon so I have some packing to do this morning.

Day +10 - WE HAVE CELLS

Today my WBCs were 1.0!!!! That means my bone marrow is starting to regrow itself and I won't need blood trasnfusions or antibiotics anymore. The doctors say that since I'm feeling much better I will probably be dismissed from inpatient service tomorrow and probably dismissed from outpatient on Wednesday. That means going home on Wednesday. Just as quickly as my cells came, my appetite returned, not at full strength but at least it's not a chore to eat. The loose stools have stopped also. The only kinda bad thing that happened today is that I needed to get some IV potassium because I lost so much during the loose stools.

Day +6 thru +9: Buying time

The past couple of days I have been lying low waiting for my WBCs to kick back in. I wish I had the energy or motivation to write more about these days but there really wasn't anything special about them. Loose stools and nausea persist but are getting easier.

Day +5 - Holy Crap this SUCKS

Well, the preliminary blood tests came back and were of course negative for everything (They always are) and the stool cultures came back negative for C-diff, which means that I'm off isolation (I forgot to mention that they assume you are positive for C-diff until you prove them wrong). Other than that I'm in survival mode, eating 5% of my meals drinking as much water as I can tolerate and trying to walk around, which is beginning to be increasingly a chore. After about 300 yards I need to take a 10 minute break before I can do the 300 yard trek back to my room. The fevers are intermittent and last for only an hour or so. My bowels are still a disaster and I spend about 25% of my waking hours in the bathroom. The doctors say that I’m doing exactly as expected and that by this weekend I should be feeling better. He said that I should not be disheartened by this hard time. I told him I was a Soldier and could take a lot more and have been thru worse things than this.

Day +4 Neutropenic fevers

I woke up early this morning with full body chills and a new unexplained pain in my left jaw, right behind the angle of the jaw. I lied in bed fro about 20 minutes contemplating whether I could call the nurse or just go back to sleep. I eventually woke up Carrie and told her to call the nurse. After the nurse did a quick assessment, I found myself down in the treatment room getting prepped for IV antibiotics. My temperature was 100.5. The PA on call prescribed the antibiotic, Cefepime, IV three times a day until my counts return. The PA also ordered a blood culture to determine what microorganism was causing my fevers. He also ordered stool cultures to rule out C-Diff infection, which is a nasty little bug that preys on immuno-compromised people. The pain in my jaw is suspected to be an infection of the parotid gland, which is exactly what I thought it was when the pain started. It seemed like the antibiotics started working immediately because ass soon as the dose was over I felt a little better. I finally got back to my room at about 0445 of day +4. I spent the majority of the waking hours in bed trying to keep warm or on the toilet trying to … well, you get the picture. My appetite practically zero and I eat only because I need to keep myself healthy. I feel like I’ve had it pretty easy so far but I think things are about to get pretty deep.

Day +3 - King on his Throne

The most exciting thing about today was the loose watery stools that I had all day. In total I had 4 stools and the nurse gets concerned after 5-6 so I'm good for now.

Annoying? -Yes.
Getting my down? -No

My WBC's dropped to 0.2 today. They didn't bother doing a differential because the white cells were so rare. I'm sure my ANC is below 300.

This evening my temp has crept up to 99.0 and my appetite has fallen to about 10%. I keep hydrated and active but I'm just not hungry. The nurse said this is completely natural and expected, I'll probably take this opportunity to loose a few of those post chemo pounds (Dont tell my nurse) Anyway, the nurse said a neutropenic fever in not uncommon and well treated if I develop one. For now the game plan is to hydrate like mad and eat what I can. Sounds like the Army...

Day +2, Blood transfusion

So my HGB dropped below the 8.0 limit for acceptable amounts in my blood. This morning it was 7.7, Guess today I get my transfusion. I have a childhood phobia of being infected with some bloodborne pathogen so I was pretty anxious about this whole thing. One good thing is that the blood supply in a "volunteer supply" which means that the donors are not paid for their blood, they give because they know its the nice thing to do. Non payment means that the junkies who sell blood to buy drugs are not in the circulation because they have no motivation to give blood.

The evening before the transfusion, the nurse came in and drew a type and cross on my blood so they would be all prepared in the morning for the trasnfusion.

The entire infusion took about 5 hours because I got 2 units and each unit runs over 2 hours. Once it got started, my anxiety about the process went away. The nurses took vitals about every half an hour to monitor my progress. The transfusion raised my hemoglobin to 10.4.

Day +1

Another very uninteresting day in Omaha. My labs came back and my hemoglobin was 8.0 and the dcotor said I'd be getting a blood transfusion tomorrow, oh fun. I feel pretty good but am starting to get loose stools from the DMSO that I got from the trasnplant. Oh, I should mention that I give off the oh so pleasant odor of creamed corn, also compliments of DMSO

Transplant day

The day before the transplant I couldn't sleep a wink I was so nervous about the procedure I ended up taking a Xanax, which is something I never do. Thankfully the atmosphere in the treatment room where I’d get my transplant was very light and not uptight at all.

Once I was settled into the room, my vitals were taken and I was connected to a heart monitor. In my civilian job I read EKGs for a living so I asked to see a printout of my heart rhythm, which the nurses gladly obliged. The next thing I know, the transplant coordinator is wheeling in this cart with a warm water bath for thawing my stem cells.

After a quick confirmation that the cells in the bag belong to me, the bags were hung on the IV pole and spiked. Slowly at first then increasing in speed, the stem cells flowed down the IV tubing into my hickman catheter. This was it. I was getting the transplant.

My transplant included three bags of stem cells that took about 15 mins each bag to infuse. Before I knew it, the transplant was over. The transplant team came in and sang me a re-birthday song and gave me my birthday cake

(The pic was taken later back in my room) and that was it. I was done. NOW, I just need to survive the next 10-15 days.

Melphalan, What a let down

In my last post I talked about getting the B-E-A of the BEAM protocol. In this short little post I'll talk about melphalan. Melphalan is supposed to be the meanest, baddest chemo given during the transplant. In my experience it was kinda lame.

The rules to melphalan are:

1. Chew ice chips for 10 mins before infusion
2. Chew ice chips during infusion
3. Chew ice chips for 20 mins after infusion
4. And of course, hydrate

The ice chips are supposed to protect your mucosa from the melphalan and avert mouthsores. hydration is a standing order for all chemos, enough said on that.

The infusion lasts about 30 mins and in very unremarkable, I had no nausea or any adverse reaction. As of this posting, I'm glad to report that there are no signs of mouth sores.

Chemo

This post is a little late.

The BCNU dose of chemo was given over three hours and is reconstituted with alcohol, so I ended up getting a pretty good buzz off of it.

Now, I'm getting my dose of ARA-C followed by Etoposide. Both are one hour infusions with a flush in between. The nausea started shortly after my second dose of Etoposide.

My Meds:

• Zofran 8mg every 8 hours for nausea.
• Allopurinol 300mg in the AM to protect my kidneys from chemo
• Bactrim DS twice a day to prevent pneumonia
• Remeron 30mg for sleep
• Lorazepam 1-2 mg every 4 hours as needed for anxiety and nausea.
• Ambien 5-10mg for sleep
• Compazine 10mg every 6 hours for nausea

A-freakin-pheresis

The past three mornings I have been getting apheresis down in the treatment center. Each session takes about 4 hours and is more or less painless. Each day I started my morning at about 6:30, drag my self down to the geriatric clinic (I know, right?) and get a, or should I say two, neupogen shots. I get out of the clinic at about 7:25 or so then grab a bite of breakfast before I head to the apheresis room.

A more detailed look at what apheresis is can be found at this link : http://en.wikipedia.org/wiki/Apheresis

Particular attention should be paid to the section on leukopheresis

Heres a look at the basic setup of the apheresis machine.

Before every session the nurses would draw a CBC from my hickman and enter the information into the apheresis machine. My WBCs were pretty high, 50 the first day, 41 the second, and 38 the last. The nurse said that a level of around 20 is average for this procedure. My RBCs and HCT were low but generally stable during the treatments. My platelets declined down to 111 by the third day, and the nurse said that was totally expected. In summary, don't be suprised if all your levels drop during apheresis.



On the first day of collection I collected 1.9 million. On the second day 1.8million and 1.4 million the last day. I had an above average yield and finished in three days, but on can expect to spend 4-5 days getting apheresis. Collection times running into a week to 12 days is not unheard of.



Some advice on apheresis is to load up on calcium before you go in. They treat your blood with sodium citrate to prevent it from clotting in the machine and some of the citrate ion is inadvertantly trasfused along with your treated blood. Sparing you a lecture on inorganic chemisty I'll just say that the citrate ion pulls calcium out of your blood and you may experience symptoms of hypocalcemia.


Early symptoms of hypocalcemia include: Tingling in lips and extremities.

Later signs and symptoms of hypocalcemia: Cramps, EKG disturbances, death.

I had trouble with calcium levels the first day but after injesting a few TUMS tabs the symptoms disapeared. The nurses recommended over the counter calcium supplements during apheresis: 1000mg the evening before and 1000mg in the morning before apheresis.


The stem cells (along with RBCs, platlets and some plasma) collect in a bag while the rest of your blood is returned to your body.

Heres what one days collection looks like

Another thing to remember about apheresis is the your blood is removed from your body at normal body temperature but returns to your body at room temperature. I recommend wearing a sweatsuit and a hat during apheresis to prevent getting cold, because you will. The nurses should offer a warm blanket; I dont care how hardcore you are (because I'm the most hardcore) but when they offer the blanket, take it.

So now that I'm done collecting I start the next phase of treatment: Conditioning... The chemo part. That begins tomorrow afternoon about 2:30

Hickman and Mobilization

Yesterday I had my Hickman Double Lumen Catheter installed...






Essentially it is a tube inserted (in my case) in the left chest that is tunneled under the skin and enters the circulatory system at the left subclavian vein and is strung into the superior vena cava and stops just inside the right atrium of the heart.








The difference between what I have and the illustration is that my catheter stops when it just enters the heart and the catheter in the illustration continues into the pulmonary artery.

The catheter is split into two sides (one red and one blue) this is so, during apharesis they can pull blood out of my body thru one tube and reinstill the blood thru the other side. This keeps them from having to start another IV.



Care for the Hickman Catheter:



Flush each side with 10cc saline daily

Cleanse entire external catheter with alcohol weekly

Cleanse body area under bandage with alcohol weekly

Change dressing weekly.

If the dressing gets wet or looses integrety then change as needed.



More Detailed Care Instructions Here: http://www.cc.nih.gov/ccc/patient_education/pepubs/hickman.pdf



I also started the Mobilization process. Basically everyday I go down to the clinic and get a dose of neupogen. I'm no stranger to neupogen since I've been getting it all thru chemo. however I get a double dose for mobilization. Instead of getting the 400mcg that most people get, I get 950mcg everyday for about 5-6 days before they start collecting the stem cells. The most common side effect of neupogen is bone pain. It would be fair to say that I'm having moderate bone pain but the pain is reasonably relieved by Tylenol.