Complete Remission Achieved

A week home now to relax, a week of tests then in for the nuclear chemo to destroy this faulty immune system and a reboot, returning freshly scrubbed cells to me. A couple weeks in the hospital until the new system is up and running. 2 weeks of sticking around Houston for daily blood tests then a few months of home quarantine where all I can eat is heavily nuked food. Then Vegas with John Winger, Cousin Eddie and John Goodman. All are welcome to join.

More fun stories to come as this week has taken it out of me.

7.9M cells

Got the call a bit early that I was ready for collection(Hey so can you come down here in about 14 minutes to get this procedure done) so yesterday they sucked out 7.9M stem cells from me. Doc said they needed just 5M so I feel very lucky not to have to go back for a 2nd day of collection. The nurse was great, explaining the whole procedure to me, showing me the machine and everything. Apparently at one time they only have 2 cups of your blood outside of your body being scrubbed for stem cells as anymore would make you faint. Only side effect was feeling very cold given the blood outside your body isn't kept as warm as the cozy 98.6 we all keep it. I woke up feeling like I was 90 and tired but a nice 5 hr nap this afternoon has gotten me back on my feet. And thank God no more shots so no more migraines or feeling like I was hit by a bat.

If all goes well with the PET I had today those cells will be coming back into me to rebuild my immune system sometime mid to late July. Its a relief to get those cells stored as it means my bone marrow is still strong and even if more chemo is necessary that hurts the bone marrow the cells will be there ready for when I go into remission.

Tomorrow have an EKG, some more blood tests and a CT(moon river!!) and Friday meet with my doc to see how everything looks. Thankfully I think then they are going to let me go home for a week. A week that will amazingly include the 4th of July--my favorite holiday given I get to blow things up. After living 12 years in New York where sparklers are outlawed I am excited to have the no holds barred fireworks' laws of Texas come into play where everything short of dynamite is allowed. It will be Aidan's first real 4th of July as well so excited to see if the pyro thing is hereditary. So if any of you see a news story about an unidentified texas man launched to the moon on the 4th, you know who they are talking about.

All the best, Stem Cell Charlie.

Big week ahead

Have been taking neulasta(something that stimulates your bones to produce massive amounts of white blood cells) shots 2x daily since I got out of the hospital about 10 days ago and one of the fun side effects is massive bone pain and a headache that mimics a migraine. So have been spending my days in dark rooms trying to sleep as much as possible to help the time pass as quickly as possible.

Since I was released they have been checking my counts every other day and thankfully my white blood cell count has started to rise, platelets dropped to 30 yesterday or about 10-15% of a normal person so been a great contributor to me being able to sleep so much ha.

Post my blood work tomorrow they should have a pretty good idea of when they are going to collect my cells. If I had to guess it would be sometime Thursday for a start with collection taking anywhere from a day to 5-6. Also this week have all my pre-transplant tests, CT scan, EKG, chest x-ray and the all important PET scan. Get the results of the PET scan at 9am on Friday so exciting but also scary.

Scary because it will show if I am in remission or not and if not how close I am to remission. If I am in complete remission then onto transplant the following week with hopefully a quick stop at home to visit with Aidan. If not then onto some other chemo depending upon what the transplant doctors feel. If you are of the praying type please pray for complete remission. From all of the studies if you enter transplant in complete remission then 5 year living/cure rates are around 65%, if you go into it only in partial remission then the rate drops dramatically to 15% so very important for me to reach complete remission.

Will write more when I know more and these darned headaches go away.

WOW that was quick--onto Stem Cell we go.

Saw the oncologist today, pretty typical stuff before starting ICE round #3. He says in passing if it was up to him they would mobilize my stem cells after this round of chemo but in reality since he wasn't in charge, what was going to happen was a PET scan in 2-3 weeks then sucking out the stem cells a week+ later. So plenty of time to recover, relax, recoup.

Instead I get a call in the hotel room that they are going to suck the stem cells out of me as soon as I am done with this chemo. This basically involves shooting me up with shots which make my bone marrow produce massive amounts of white blood cells. Then they literally stick something the size of a garden hose in the side of your neck and filter your blood through a dialysis type machine sucking out the baby stem cells for 4 hours a day.

Min for re-infusion is 2 million cells which can take anywhere from a day to a week to extract but I am hoping for more cells in not a lot of time. They are then going to do my PET, let me rest for a few days and if all is clear off to stem cell transplant, nuclear chemo, a month in the hospital and a month in Houston where they monitor you each day.

WOW a little quicker time table than I was anticipating. I feel like clyde the orangutan from the classic Clint Eastwood film, Every Which Way but Loose(robbed of an Oscar that year, 4 stars though highly recommended please Netflix it) But I guess the sooner I get going the sooner I can work on getting better and back home.

I am praying for a clean PET scan and for my body to recover quickly so I can head into transplant strong. In great news Aidan is home from the hospital and is as funny as ever. Emilia finally relented and shaved his head so he could look like his poppa. I think he looks great.

No idea how I will be feeling going forward but will try and update folks as the process goes on.

One funny and one great listen.

http://www.mdanderson.org/newsroom/cancer-newsline/cancer-newsline-topics/2011/cancer-newsline-don-t-let-stress-get-under-your-skin.html

A is for attacking Cancer Cells

See if you send me silly things I will actually wear them.

Ice Ice #2 and a fat man in a little kimono

Well the 2nd round of ICE sucked about as much as the first round. No 2 ways about it chemo just isn't that fun or funny. I did manage to hold down my cookies until getting discharged from the hospital this time though.

Most of the nurses are super professional. As well as the folks who come around and take vitals and blood. 3 separate people,1 for each job. I had one guy named Daniel who was in charge of my vitals for 2 12 hour shifts. Spitting image of the guy that everyone picks on in Lean on Me but about 2x the size. One night he comes in all gowned up and given his size he has to turn my IV pole towards me to get to the blood pressure cuff. These IV poles are like Christmas trees if pointed the right way so he wakes me up. Nausea kicks in so I make like I am going to blow some chow and instead of finishing the vitals Daniel,  yelps, "I'm outta here" and does the shuffle out the door. I just hope there wasn't anyone on the other side of the door. That made me laugh at least. I wish there were more funny stories this time around.

Same schedule relatively as last time. Get discharged, wait a day then get this shot neulasta which pumps up the white blood cells. Amazing these suckers cost 10k a pop. Drive home, spend 2 days bargaining with the chemo gods if they took the nausea away they could have a limb. Then the pain of this neulasta shot kicks in for 3 days(feels for me like someone is trying to expand my bones from the inside using a pneumatic pump). Then after that all good, just tired and sleep a lot of the time.

Thank God my counts have responded both times after dipping low, about 9 days post chemo they are climbing back up. In fact my white blood cells now are normal and just 2 days ago they were 15% of normal. Platelets are still about 1/3 of normal hence the tiredness but so far so good.

Plan now is to head back in a week for ICE #3, wait 2-3 weeks and get a PET/CT scan. If I am in complete remission at that point they will go ahead and start sucking the stem cells out of me and getting me ready for transplant. If not then we will try another form of chemo. I know the current form is working as my lymph nodes have all decreased to where they can't be felt, just a matter of if there is any residual disease.

Thanks everyone for the great Hawaiian shirts, I think I am up to around 10 now so plenty enough to wear during transplant. In addition I have decided I will summon the powers of the Sumo for this next ICE and ordered out myself a SUMO robe. A lot of long faces at MD Anderson so hopefully folks seeing me wear this around will get a chuckle. Sure made me laugh looking at myself in it.

If you are the praying sort please have a prayer for the little man, he had a seizure this morning so is spending some time at the hospital hooked up to wires and such, and for my old man who had some health issues as well and is out of commission being able to help.

Please laugh loud and hard at the fat man in the sumo kimono. Maybe for my next entry I will strike some karate moves for the photos and you can call me Chest Rockwell.