Thursday, April 28, 2011

The new immune system takes a spin on the bike

Yesterday I had my blood counts tested and my platelets had gone up from 33 last Wed to 119 yesterday. Yoo-hoo! Minimum count for bike riding is 50 so I am now officially blessed to ride the bikes in public again. Quite a milestone. We also added a new member to our family yesterday, celebrating Caitlyn's graduation from grad school and her birthday:

The Specialized Dolce Elite will soon be ripping up the roads around Bozeman, MT. As a break-in ride and celebrating my return to biking we got out for a short ride around Louisville:
Louisville short course

Hematocrit is still only about 70% of my normal so I've got a ways to go before feeling normal on the bike. But boy, it REALLY felt good to get out and ride my book and have it actually move :) 

Following up on the wicked 7 mile ride, we kept it local and hit the Lucky Pie for nuts, olives, pizza and beers. Still not ready to really hit it hard on the alcohol front but I can now drink one beer and enjoy it. 

All in all, a pretty awesome day. Looking for a lot more of these to come!

Sunday, April 24, 2011

Coming Back to Life and a Shout Out to My Girls (by Susan)

Easter seems to be an appropriate time to talk about coming back to life.  No matter what your spiritual beliefs, this is a season to celebrate renewal and love.  George and I are both beginning to feel those twinges of new life, just like the green shoots that are nudging their way up in the front garden that we planted last summer.  During the weeks leading up to and just after George's stem cell transplant all we could think about was making sure George didn't get an infection, monitoring his blood counts, driving back and forth to the hospital every day, keeping the house spotless and preparing germ-free meals (and, in George's case, keeping the meals down!).  So, now that he's made it through the process and things are going well, other parts of us that had been put on hold are now waking up again.  And just like when hands or feet fall asleep and you get pins and needles when the feeling starts coming back, some of this waking up process hurts.  Both of us realize that we will have emotional repercussions from this long after the physical scars have healed.  You just can't come that close to the brink of life and death without it affecting you. 

As I wrote in my last post, my first reaction was one of just wanting to sleep a lot.  Then, after that cleared up, I decided to take advantage of several offers of nurturing and fun for the Caregiver - that's me :)  So, last week, I enlisted the aid of my girls to do some activities to start getting myself back into the world. 

First, I biked with my Tuesday night Chicks on Bikes group.  We had a great time and it just felt so good to work hard biking uphill and then get the reward of screaming downhill at the end and yelling as we came into the parking lot.  Then we had dinner and we had some great laughs and catching up over Indian food.  So THANKs  to Karen, Amanda, Robynn, Joan, Sherrie, Vera, Dana, Sue, Suzy, Kate, Karen L., Gina and all the rest of the Chicks on Bikes.  You rock and help me to stay sane.  

On Thursday George and I did a hike at Roxborough park with some of my dear friends from my Coors days - Kris, Chris, and Gen.    We had a wonderful time in the sunshine, talked a lot, and got some nature exploration in there.   These women have stood by me through thick and thin and all the ups and downs of our lives over the past - could it be -25 years?  Wow.  They also helped clean out my kitchen cabinets and get the house ready for our "bubble boy" before his transplant.  Now THAT's friendship. 

Then, on Friday I took the biggest splurge of all and had a spa day at the St. Julien with my dear sister Celia and my oldest friend Nancy (we have known each other since college). These two, along with Kyle,  were the backup caregivers for George - helping us with food shopping,  "babysitting" George on a few occasions so I could go out, giving us lunch, etc.  I got a massage, a facial, and a pedicure and totally pampered myself.  It felt so good I almost cried!  And thanks to George for supporting me in spoiling myself a little. 

SO - I realized that this whole process of getting George better has required a veritable army of support people, in addition to the team of doctors, nurses, apheresis specialists, lab technicians, x-ray technicians, etc. who have worked so hard for us over the past six weeks.   We know that we could not have done all this and could not have survived without our friends and family.  And, in some ways, we know that the research scientists and doctors who work so hard to some up with these amazing treatments also are motivated by a love of their fellow human beings and a desire to make a difference in people's lives.   This is what they mean when the cancer centers say that "love heals".   

While I'm thanking people, I'd also like to mention the Ojo Girlz for their offers of support, and Carolyn and Scott and also Carlin cleaning out our garage and also our yard.  Scott and Carlin, while not girls, are also great friends.  And many thanks to Kyle for his strong, silent type support and being the relief pitcher when I HAD to get out of the house.  And also thanks in advance to Caitlyn for flying in this week to take over so I can go back to work without worrying about it. And one final shout out to Danielle and the team from Flatirons for the Team Geo Love website, presents, food, and other "vegan" libations.

Tomorrow I go back to work.  The time has gone very quickly and I'm glad I could be there with Geo every day during this part of his journey.   It's going to seem strange to be back in the office, but life goes on and we do need to pay our bills (isn't that funny how that never goes away as long as you are alive?).   I know I'll miss my daily interactions with Geo, except for the times when he criticized my driving.  Now he's cleared to drive himself, so look out everyone in Boulder and Louisville!   But again, a big THANK YOU to my girls (and boys) - we couldn't do it without you!

Wednesday, April 20, 2011

Day +23 - graduation!

Today I graduated from the transplant program. Yeah! Everything continues to go well. All my counts continue to go up. I'm getting one more bag of platelets this morning to get me up over the magic 50 number which means I will also get my central line out today as well. It will be another few months of being very careful about getting exposed to infections so I'm not back to being completely normal in terms of immune system function. The chemo really blasts your bone marrow so even though I've gotten back my own stem cells my immune system is still fragile because of the damage done to my bone marrow bye the chemo. Looks like I'll be able to get back on the bike late nex week which will be really awesome.

The nurses were a bit concerned when I reported that my heart rate was 172 after my run yesterday. So maybe a little more caution on pushing the cardio engine is in order. Te other big freedom enabled is that I've been cleared to drive! That'll be huge.


Tuesday, April 19, 2011

Day +22 - bike dad

We've all heard of soccer moms  - throwing the kids, gear, folding chairs into the car and trundling everyone over to the soccer field to watch the great machinations of youth soccer games. Today I did the biking equivalent of that and was a bike dad. Susan and I packed up her road bike and we went up to NCAR in South Boulder. This is a nice road for doing hill work. It's got a 2000 meter long climb that climbs about 500 vertical feet with grades of from 3-8%. You can do as many as you want, as hard as you want and regroup at the top with other folks in your group. This past winter they made a bigger breakdown lane on the uphill side of the road so the road is extremely bike friendly. We timed our outing to coincide with our Tuesday work lunch ride. I perched a folding chair at the top of the climb in the NCAR parking lot and cheered on Kevin, Tony, Bob and Susan as they did their hill work. In between bike sightings, I got to enjoy the chaos of watching elementary school kids on their field trip go all jihad on each other during their lunch break. Gives you a renewed sense for how much work elementary school teachers do! Anyway, it was great to see the guys from work and support Susan as she starts up her training for the Copper Triangle in August.

This afternoon I did get out for a small run. Double the distance from Friday and almost a min/mile faster. So quantitatively I'm definitely improving! And today is the first day that I think I'll make it through the whole day without a nap. Woo-hoo! Not that naps aren't great, but when you have to have one to get through the day its a bit of a drag. Oops, here it is, 2:30 in the afternoon, feeling like crap, guess I need a nap. Today I managed to get through that period ok - another big milestone to get ready to rejoin the land of the living. I seem to remember that most adults can actually make it through the work day without napping so that's my goal!

Tomorrow we're in early to see the doctor, get my blood counts and hopefully, graduate from the program and get my line removed. I certainly feel better every day so I'm cautiously optimistic that we'll get released for more activities after tomorrow.

That's it for now! Off to watch some soccer on TV and rest up after my grueling .98 mile run :)

Monday, April 18, 2011

Day +21 platelets have engrafted

Yeah! The final piece of the blood chemistry puzzle is falling into place. My platelets are at 21 this morning, up from 16 on Friday. My whites are down some this morning, but that's a normal reaction to getting off of the Neupogen. Reds are up a bit as well; my crit is now up over 28, from 26.5 on Friday.

Our next checkup is Wed morning. If everything is still going in a good direction I'll get my line out and graduate from the program. We have lots of questions about when I can start doing a wide range of activities, so we'll talk through all that on wed. with the nurse. In the interim, just doing the slow, boring but necessary work of recharging the engine. Today we're looking to get a hike in up in the foothills somewhere.

That's it for now. Kind of boring, which is a good thing!

Sunday, April 17, 2011

Day + 20 - a good weekend (by Susan)

Thanks to Geo's rising blood counts, we had the weekend off  and did not need to go to the blood center or to the hospital - yay!  His while blood cells are now within a normal range, his red blood cells are going up, and his platelets are still low but they are typically the last thing to rise.  The doctors and nurses at the blood center couldn't believe that he actually was running last week (as compared to many patients who can barely walk to the mailbox at this stage).  On Friday when we went to the blood center they were taking bets on how far he ran that morning (that was the half-mile day).    So, only have two more appointments this week.  George's exit interview is planned for Wednesday, when he is also scheduled to get the port out.

George is no longer getting IV antibiotics, IV anti-nausea medicine, IV fluids, or any other IV meds.   He is feeling better and better each day.   The doctor told us that he basically has the immune system of a newborn baby right now - all of his previous immunities to measles, mumps, chicken pox, smallpox, flu, etc., are gone.  So, he will need to get re-inoculated against these childhood diseases.  Isn't that crazy?  So, while he has normal white blood cell counts, he basically has not immunity to anything, that's why he still needs to be really careful about being in group situations and being around anyone who is sick with a cold, flu, or anything else.

George is starting to get really antsy - sick of being in the house, sick of not being able to drive, sick of not being able to ride his bike outside.  This is a very good sign because there was nothing worse than seeing him lie there completely wiped out and nauseated, and not wanting to do anything. I have never seen George like that before and it was very heart-wrenching, not to mention scary.  So, I will take antsy and ornery Geo any day of the week!  We will find out during the exit interview how long it will take to resume normal activities.  We are making a list of things like, when can we eat out, when can we visit friends, when can we go camping, how long do we have to maintain the nutrapenic diet,  how long until George can take an airline flight, etc., etc. 

A funny thing happened to me last week.  When we knew for sure that George was out of the woods and he was on the mend, I suddenly became very, very tired.    It was last Thursday, and all I could do was sleep the whole day.  I must have taken about five naps and had no energy at all.  On Friday I started feeling better, and now I am getting back to my normal energy level.  But I just didn't realize how exhausted I was by this whole thing. 

I can see how people need to find their "new normal" after going through cancer treatments.  Even after the physical scars have healed, I know it's going to take some doing to get both George and me back to feeling mentally and emotionally the way we used to - if that ever WAS normal!  However, I'm not going to worry about that now - I'm just going to enjoy having my feisty, opinionated, dancing Geo back again!

Friday, April 15, 2011

Day +18 - on the way back to the world

Morning, all. Day +18 and we're back in the doctor's office for a short visit to check my counts. My whites are still going up, reds going up, platelets still edging down a bit. Hopefully by Monday my platelets will start coming up. I've got to get to a platelet count of 50 (I'm at 16 right now) before I'm free to do things like ride my bike or drive a car so that's the next big milestone.  Everyday I'm feeling a bit better and I am starting to approach feeling "normal" - whatever that means. The current schedule is that I'll get my line removed next Wed and will graduate from the program. Yeah!

This morning I felt chipper enough to do a run. 1/2 mile at a whopping 14:58/mile pace. Whoa! Brisk walkers will exceed this pace but it was the first sustained run I've done in a month so another big milestone. My heart definitely noticed the work - I was close to 170 by the end of the run. Here's the graph of this baby workout (click the image for a more viewable version):

And I liked the juxtaposition of 3 Teat Pete and the heart rate monitor:

And while we're on the subject of slightly inappropriate body pictures, here's what happens when you get  a shot in your tummy and your platelets are at 8:

I've finally started to get some taste and appetite back. The simple pleasures of enjoying a bowl of cereal are now mine to savor:

Well, that's it for today. Off for a walk with Susan and then back to the casa for some coding. Happy Friday!

Wednesday, April 13, 2011

day +16; fuck, yeah!

Oops, sorry for the potty mouth title to this post. But that's basically the way I'm feeling today. Like, fuck yeah, I'm getting my mojo back! A big milestone today in many ways. Let me count the ways today has been awesome:

  • ANC is up to 3200. This is well inside the normal range of 1500-7000. This also means that today was my last shot of Neupogen. Neupogen is one of the wonder drugs that is great in what it does (boost WBC production) but not that much fun to take - makes me feel like I have a mild case of the flu. So getting off of the Neupogen is huge and having such a big jump in ANC (was 1880 yesterday) is another strong sign that my bone marrow is rockin' and rollin'. 
  • Today is my last day of antibiotics. I've been getting infused 5 times/day with antibiotics, which pretty much sucks. So to be done with that is another huge sign that our lives are starting to return to something like normalcy.
  • RBCs are up. Today is the first day in weeks where my red blood cell population has increased. Another good sign that my bone marrow is recovering from the chemo. Plus, low RBCs (aka anemia) make you feel like shit. Sort of like hiking uphill at 20,000 feet with a bad case of the flu. 
  • We get a day off tomorrow! For the first time in 26 days we don't have an appt at the blood center or hospital. Gee, what will we do with our time? Oh, yeah, how about living life? Yeah, let's do that.
  • Next week I get 3-teat Pete out - probably Wednesday. It's been awesome being able to have all these things go in and out of my bloodstream without getting stuck with a needle but having a 3 port central venous line hanging out of your chest is a very obvious sign that you are in the middle of a medical shit storm. So Pete's done a great job but I'll be happy to get the little three headed hydra out of my chest.
  • Headaches are gone. I've been getting some pretty nasty headaches and apparently this can be caused by one of the anti-nausea meds I've been on. We've stopped the Kytril and - whammo! - no more headaches. Kytril can also cause constipation so getting rid of the headaches and also getting my plumbing to flow a bit better are two huge steps in the right direction.
  • I feel BETTER. Today is the first day in a month where at times I've pretty much felt normal. No headaches, reasonable energy, no nausea, appetite improving, GI tract happy. I got out for a quick walk this morning, did a brief spin on the bike and am planning on a longer walk here this afternoon. 
  • Felt so good at lunch that we had an impromptu dance session when Van Morrison's "Brown Eyed Girl" came on the radio. This has been a favorite song of ours (I bet you can guess what color eyes Susan has :) and it was great to feel good enough to bring the Geo-dance (complete with T-rexxing!) out for a brief practice session. And then I immediately started crying. Tears streaming down my face. I feel like I've been under water or submerged in illness for the last 3 weeks and to feel like I'm coming back into the world is incredibly powerful. Couple that with a favorite song and dancing with your sweetie and if that doesn't make you cry, you don't have a heart. At least that's my story and I'm stickin' with it!
So, yeah, it's been a good day. I'm looking forward to another 10,000 good days (that would put me at about  80 years of age) and the work over the last month is setting me up for a good long time in this space, with loving friends, family and lots of trails still to mountain bike. And to quote one of my favorite movies, "So I got that goin' for me, which is nice".

Tuesday, April 12, 2011

Day +15 - I am a blood doper and it feels good!

Morning, all. Today is day +15 and things are continuing to improve. Yesterday my ANC was about 1100, almost double from the day before. Yeah! But my hematocrit was down a bit more (23.5) so we decided to top off my tanks with 2 units of red blood. Each bag is about 90 minutes of infusion and I also got a bag of platelets (another 30 minutes). So it ended up being a pretty long day at the infusion center and hospital. We had an 11:00 am appt yesterday and didn't get  home until about 7:45 pm.

The transfusion was uneventful and I almost immediately started feeling quite a bit more chipper. My entire body has been really working to keep things going with my reduced # of red blood cells so everything started feeling WAY better as I got the new blood. It's really amazing, cool and wonderful to think that someone donated these red blood cells that are helping me get better. So this is a big shout out to all of you that donate blood. As a recipient of both platelets and red blood cells I can say without exaggeration that these blood products have saved my life during this process. Without them my organs would probably start leaking (due to low platelets) and at some point I would  have some serious cardio/pulmonary/cerebral event (due to low red blood cells). So I'm a very concrete example of the benefits that come from  your blood donation. So thank you, thank you, thank you!

With my new red blood cell volume I had a really nice, relaxed sleep and got out for a walk this morning. We threw in a few 60 yard runs during the mile long walk. I  haven't run in about 3-4 weeks so although I was immediately gassed it sure felt good to have enough energy to even run a little bit.

It's not clear if my bone marrow is healthy enough yet to keep up my red and platelet levels or if I'll need more transfusions as I recover. It appears that the priority of your bone marrow is to get your immune system healthy (through white blood cell production) and then work on generating reds and platelets. Platelets don't live very long (3-5 days) so if you're not making enough you can run low fairly quickly. So I may have more platelet and red blood cell transfusions down the line in the next couple of weeks.

Our appt is at 1:00 this afternoon so we won't know about blood counts until about 3:00 pm or so. If things continue to go up I'll probably be able to stop one of the antibiotic infusions today. That will make things easier logistically as we'll go from 5x/day infusions down to 2x/day.

Ok, that's the update from the salt mines. More news as it happens!

Sunday, April 10, 2011

Day 13 - ANC > 500, yeah!

Day +13 and counts continue to go up. My ANC this morning was 570, which is very cool. 500 is a bit of a milestone; if you're less than that # you're seriously at risk for getting some nasty infection so getting above 500 is a big milestone (yesterday I was at 270). Red blood cells and platelets have not yet started to climb but I've so far avoided a red blood cell transfusion. My crit this morning was 24.8 (normal for an adult male is 40-50) so I'm still feeling the effects of low crit but things continue to go in the right direction. We're hopeful that tomorrow we'll be able to stop doing the IV antibiotics. I'm getting 5 infusions a day for antibiotics - 1 in the clinic and 4 at home. It's a major PITA so it will be great to get that off our plate. Our first infusion starts at 5:30 in the morning and the last one finishes about 11-11:30 at night so it makes for a long day.

I'm also continuing to really dislike neupogen. It's helping my immune system reload so it's A Good Thing but it's giving me major sinus headaches. At times I feel like I have a hot poker sticking into my right eyebrow and other times it manifests itself as throbbing pain at the base of the back of my head, just above my neck. But these are all good pains, indicating that my immune system is rockin' and rollin'. So I'm trying to grin and bear it but I'm certainly ready to be done with this part of the journey.

Today we got out for a nice walk around old town Louisville and looked at some neat houses. There are a bunch of fun streets in Louisville where folks have upgraded little bungalows and it was fun to see what people have done with these properties.

One other fun and super geeky thing we did today was to play network scrabble against each other. We were at the infusion center, playing each other over the Internet. Another great way to waste time while I sit in the big chair and get dosed with fluids and antibiotics. Today was the 26th day in a row I've been down to the hospital or clinic so I'm really looking for the matter transporter to get me there but so far we've been stuck with more conventional means of transport.

Ok, that's it for now! I wouldn't say that we're out of the woods yet but I think we can see the edge of the forest from where we're standing. Another few days  of clean living and we'll hopefully be over the top.

Thx for checking in! Hope you're having a good weekend, and remember that One Fun Thing a day is a good way to live life :)

Friday, April 8, 2011

engraftment, baby!

Day +11 and I'm happy to report that my bone marrow is starting to produce new white blood cells. My ANC is now 0.1, WBCs are 0.4 and we're heading in a good direction. I got a platelet transfusion yesterday afternoon to keep me safe and may get a red blood transfusion over the weekend. But with an ANC > 0 and 2 days in a row of my total WBC count going up we can conclude that my bone marrow is back in business. I'm still not feeling like running any wind sprints since my RBC #s are all pretty low but this is definitely a major milestone.  Now we're just hangin' in there, being healthy, waiting for my immune system to continue to wramp up. When my ANC > 1.0 for two days I'll be able to stop the antibiotics which will be a big step logistically, since I spend about 4 hrs/day getting infused with the antibiotics.

So it's a happy Friday at the infusion center. More news as it happens!

Thursday, April 7, 2011

counts are starting to creep up

Day +10 this morning and I just got back my lab results. My WBCs  and RBCs are both starting to tick up a bit. Platelets are down and the real indicator of immune system health (ANC, which measures a type of infection fighting white blood cells) is still basically at zero. But the fact that some of the markers are edging up mean that  I think we've reached the bottom and are now starting to climb up to a more normal blood chemistry. Yeah! The only bad part of today is that they're giving me a drug that stimulates white blood cell growth in your bone marrow (Neupogen) but it makes you feel like you have the flu. So although my temp is normal I feel a bit feverish, achy, etc. A very reasonable trade-off - grow white cells faster vs. a bit of physical discomfort - but it's still another straw on the back of the Geo medical camel.

Well, that's it for now. I'll finish getting my normal set of fluids and electrolytes and then pop across the street and get a platelet infusion to keep me safe from any sort of bleeding incident. You know, like blowing your nose and having half your blood volume come streaming down your chest. Or sneezing and having a similar reaction. Or coughing and trigger some crazy pulmonary/esophageal bleeding incident.  You know, little things that yeah, you might be ok with for fun but to keep it boring you probably want to avoid :)

Wednesday, April 6, 2011

Day +9 - Starting to feel more cheerful (by Susan)

Today both George and I are feeling more optimistic and cheerful than we have been.  George's counts still have not gone up - they are pretty much in the basement.  He escaped getting a transfusion of red blood cells by .5 today (his red cell count was 24.4 and he gets a transfusion if it goes below 24).  So we had a relatively short day at the blood center.  However, his stomach and mouth are starting to feel a little bit better.  George actually ate a normal breakfast and lunch today, and while he didn't enjoy the food, at least he didn't feel like throwing up when he ate it, which is a lot better than he has been doing.  The doctor told us today that it's possible his immune system is starting to come back, but it's working on his stomach and mouth first before going back into the bone marrow.  The bottom line is that George is feeling the teeniest tiniest bit better, and that's reason to be cheerful. 

The infusions are going well at home.  I have turned from a quivering, anxious wreck into a calm and competent professional in just two days.   I was able to get up at 5:30 this morning and get everything set up so George was getting his antibiotics by 6:00, no sweat.  But I do have even more respect for the infusion nurses who do this job so calmly and cheerfully.  They are real rock stars, in my opinion.  We are getting to be friends with all of them. 

They have a support group for transplant caregivers at Presby St. Luke's once a week - it is run by a staff psychologist and a young intern who's in psychology graduate school at D.U.  I always feel better after going to this because it gives me a chance to see that everyone who gets transplants goes through probably the toughest time in their lives.  It helps to feel less alone in this.  You do hear about all kinds of crazy things happening from the support group - like the guy who got up and stepped on his infusion line and yanked it out of his chest and had blood spurting all over the place, people curled up in fetal balls because they are in so much pain, people who are so tired that they have to take a nap after taking a shower, and patients who will NOT follow their caregivers' instructions (that sounds familiar). 

Listening to all of these stories makes me realize that George is doing really well through all this.  He's been able to get out for one-mile walks just about every day, he is still working on his program for the Android, he still has enough energy to joke around with the nurses and tell me he loves me every day. 

I told the Caregiver Support group about Josh's idea for "One Fun Thing" each day, and it really resonated.   So, Josh, you have started a movement!  All over the city we have people trying to find One Fun Thing to do.  Today our One Fun Thing is that George is going to have virtual dinner with his biking boys by using the Face Time application on his new iPad, and Kyle is coming over so I can go to yoga class.    It really helps to have something to look forward to.

Tuesday, April 5, 2011

Day 8 - when a pimple is big deal

Morning, all. Day +8 in our fun filled adventure in growing a new immune system. I'm definitely feeling better today - got a little more bounce in my step, temperature is down, etc. My counts are in general still going down so I haven't turned the corner yet but the antibiotic has reduced my fever and that's made me feel tons better.

So, to a discussion of the title of this post. This morning I noticed a little pimple on my leg. A little red welt that's probably 2 mm in diameter. Now, for all of you cool folks out there with a functional immune system, these kind of skin issues just come and go, no big deal. But when your ANC (a measure of your immune fighting white blood cells) is in the basement, these kinds of issues are not ok! What starts as a minor bacterial skirmish on a hair follicle in your leg can grow into some gross, nasty boil that can make you really sick. So the answer is another IV antibiotic that I'll take for the next few days. I'll get one dose in the infusion clinic and Susan will give me another dose at home. BTW, my mighty wing woman is becoming quite skilled in delivering IV antibiotic infusions. She's now an ace in setting up the drip line, bleeding air from the line, hooking things up in a sterile fashion, getting the drip rate correct, etc.

The next time you get a pimple and it goes away, score one for your mighty immune system. In another few days I should be able to man up and bitch slap any pimples that come my way, but until then, I'll be relying on modern medicine to keep my skin (and the rest of me) relatively healthy.

Yeah antibiotics! Yeah, life!

Sunday, April 3, 2011

Day + Six - are we at the bottom yet? (by Susan)

We are now at day 6 after the stem cell transplant, and George is definitely at a low point.  His counts have dropped very low - close to zero for platelets and white blood cells, although red blood cells aren't quite as bad.   George woke up at 5:00 a.m. this morning with a fever of 100.6, and the doctors told us to call the blood center if it got above 100.5, because this could indicate infection.  So, I called the blood center and the doctor on call told me just to give him some Tylenol and come in for our regular appointment at 8:00 a.m.    On the weekends we have been going to the Presbyterian St. Luke's infusion center because the Blood Center is closed.    When we told them what was going on, the nurse said, "OK - this is First Fever", as if it is a very common occurrence.   She got him on an IV antibiotic (they actually administer it through his port) right away, and took some blood samples to be cultured to figure out if it is an infection or just what they call  a "neutropenic fever".   The doctor doing rounds today told us that each transplant is unique, and they have to be prepared for all kinds of crazy stuff happening.  Since George has no capacity to fight infection right now, any bacteria circulating in his system, even from something as simple as brushing his teeth, could potentially cause a fever. 

I guess fevers in transplant patients are pretty common, though, because before we even started this process they made us sign a contract with a home care company who delivered a box of antibiotics and tubes for us to keep ready at home.  Today I was told that I would need to administer IV antibiotics to George three times a day at home.  So, I learned how to mix the antibiotics, how to hang them from a pole that we have at home, and how to get them going in a line right into George's port.  I also have to flush the port with saline and heperin.  Yikes - that is a lot for a person who definitely NEVER wanted to go to med school.

So, while George was starting to feel a little bit better yesterday, today has been his worst day yet.  He has been extremely tired and it has been difficult to get him to eat anything.  At least I got him to drink a big glass of Gatorade tonight.  I have to give him the antibiotics tonight at 10:00 and again at 6:00 a.m. tomorrow.  I hope these start doing the trick.  We should know more when we get the culture back tomorrow. 

We're just counting the days until engrafting takes place and Geo can start feeling better again. 

Friday, April 1, 2011

How much Geo to share?

Morning, all. Down at the transplant center this morning and just finished having an interesting conversation with the team of doctors. As part of the transplant process I've signed up to be part of a clinical trial that looks at the cross compatibility of my progenitor stem cells to be genetically enhanced to act as a source of uber cells that could be used to help other patients. As everyone knows, Italian stem cells are incredibly robust and mine have been tempered down through the generations with a healthy cross-dose of other pan-Euro stem cells from my ancestors in Ireland, Scotland and Austria. Over the past week they've been evaluating my cells and have come to the conclusion that I have the best stem cells every seen in someone that's descended from European ancestors.

But here's the big catch - if they give my stem cells to other transplant patients, there will be side effects. Because of the strength of my stem cells, they will do some genetic remapping of the recipients. The most likely changes to the donor are a bigger nose, louder voice and a tendency to blurt out inappropriate comments at social gatherings. Also a creeping desire to wear socks with flip-flops.

So the big moral question I face is dare I unleash this on the population? Of course if it helps save peoples' lives it would seem like a reasonable trade-off but I think there are some subtle karmic questions here. Do we all have different paths to enlightenment and would I be corrupting someone's path by letting them get the uber Geo cells? This could be a Pandora's box - once my little guys start getting out into the greater population parties may never be the same. And the fashion implications are really too terrible to think about...

It's a tough decision that I've got to grapple with. Luckily this seems like the perfect day to think about these deep thoughts so thanks for allowing me to share my dilemma. Let me know what you think!