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!

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.

Mnaih!

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 :)

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!

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!

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!

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".