My Wife Barb and Leukemia - Part 2
Since I brought it up I suppose I should continue the saga… my wife Barb and leukemia. As I noted in a recent post which you can find here, my wife was diagnosed with acute myeloid leukemia (AML) in mid-January… about one week after her 49th birthday. Trust me, that ain’t a good thing. Whether we knew it or not, we had entered the land of scary statistics.
I wrote that first post when my feelings were still very raw… I wanted to capture that… I wanted to not forget what it was like. This post is a little more in control ;-) Don’t know if that is good or bad, it simply is.
First a picture… luckily for Barb, she looks pretty good bald ;-) Since we figured Barb would never be bald again we had some professional photos taken. She likes this one…
This was taken by the daughter of a friend from high school who is a great professional photographer. Her name is Sarah Guibord. Sarah has a great artistic eye and is young, bubbly and outgoing – kind of like Barb! She has the ability to really connect with folks and I think it shows in her work. So if you need a wedding photographer, or any type of great photographic work, please consider Sarah. To see some of her work, her web site is www.sarahguibord.com
Now back to the story… this process started when Barb was feeling a little ill (which is very rare) and I bitched until she went to the doctor. She had postponed a routine blood test for a few months so she decided to have this done on the same visit. Then came the call that she perhaps had leukemia and we should visit an oncologist. More blood drawn and then the wait… I was stuck in a tough place since I was in the process of putting a new re-organization in place… a critical time that I couldn’t simply walk away from. I make a profound commitment to my clients… they put their businesses and the lives of their employees in my hands… I do not take this commitment lightly and up until this moment in time have always put their best interests ahead of mine.
Thus I was on the road when she first visited the oncologist with a good friend. We tried to hang in there but when I got a crying phone call at 10:00 AM that she needed me home I simply bailed. I generally try not to bawl in front of my clients ;-) but this time didn’t have any success. This was 2 days before we were putting the new organization on the street. But as I often note in my consulting… if you build something right (as an example a gasoline engine) it MUST work if every part works as designed. It is a physical reality. When you turn the key it will fire up. This client has a great management team and we had spent months building and training the new org… I did bail but the re-org hit the street with no more than the usual bumps in the road. A big thanks to some great owners and a great management team… you know who you are.
So I flew home and we cried and waited. On Tuesday we met the oncologist. Yes it was leukemia, AML to be specific… at that point we didn’t know anything about leukemia… other than it was one of those diseases you don’t want to get. Although the oncologist didn’t have enough data, he guessed a bone marrow transplant might be the best hope. This oncologist attends church with one of Barb’s good friends… when he said goodbye to us he was crying… when an oncologist tears up on telling you your next steps, you can be pretty sure things aren’t real rosy in Barb-Land.
But luckily for us, one the country’s regional centers for bone marrow transplants is in Denver… Presbyterian St. Luke’s. Seattle is the big dog in this world but all of these doctors have trained in Seattle. So on Wednesday we go to see the experts in this… the Colorado Blood Cancer Institute. We spoke to the head of the place, a pretty nice doctor originally from New Zealand. We discussed the various options… bad and worst. The first step would be induction therapy… the goal of this being to get the leukemia in remission. After that, and assuming it works, we would either move on to a bone marrow transplant or more chemo treatments. This is when the land of bad statistics becomes much more focused… things like 80% mortality rates… yeah that means 8 out of 10 will die. But with effective treatments this might be turned to “only” 60% mortality. Yee haw.
I’ve often joked that life is easy when there are no choices and we were certainly at that point. We had asked the first oncologist what would happen if Barb chose to do nothing… real simple he said, you’ll probably be dead in 60 to 90 days. Makes the first decision relatively easy ;-) The leukemia would continually lower Barb’s ability to fight infections and sooner or later (probably sooner) one of them would simply run wild through her and that would be the end of that. A measure of one’s body to fight infections is called the absolute neutrophil count (ANC)… anything below 1,000 means you are very susceptible to infections… Barb was at 576. We were darn lucky Barb hadn’t already caught something… she is a librarian in a middle school and you all know my feelings about kids… they are disease carrying rodents ;-) As we go through this process we will find this belief is closer to reality than one might think. Not the rodent part, the disease part. We keep away from young children like the plague… easy for me, not so easy for Barb.
We decide to move forward with the blood cancer experts and Barb is scheduled to enter the hospital on Friday… so we go from a Tuesday diagnosis… Wednesday meeting with blood cancer specialists… Thursday they insert a port… and Friday hospital. A week to remember (or forget). On Friday Barb starts a 7 day chemo treatment and plans to remain in the hospital for around 30 days. She handles the chemo pretty well and nothing terrible happens during this long stay. The chemo drives her blood counts very low and she is VERY susceptible to infections during this time so there’s a lot of glove wearing and other protections. But she makes it through… finally a bone marrow biopsy and the good news that there is no sign of leukemia, it is in remission. That’s the good news… but with AML and the subset of it that Barb has, the good news is tempered by the reality that it almost always comes back… and when it comes back it might be more aggressive, it might not go into remission again, and you’ll probably be a lot sicker the next time around.
So the choices are… do nothing and hope it never returns… start down a path of future chemo treatments (consolidation therapy) where you attempt to keep it in remission… or go for a bone marrow transplant. The bone marrow transplant is not a risk-free choice. Just complications from the treatment alone will kill up to 20%. Yeah, double yikes. One of the doctors (and he wasn’t that old) noted that when he first started in this area of medicine, 50% of the transplant patients died within the first MONTH… of course he told us this after the transplant ;-) This is incredibly complicated medicine. In affect they are transplanting a new immune system… and our little ol’ immune systems are rather important to a wide variety of our body’s functions.
But the transplant does have one major factor… if it works (and doesn’t kill you) it is the path to a potential CURE. Not guaranteed by a long shot but a chance nonetheless. Since we knew the transplant was an option, Barb’s siblings were tested for a match during her hospital stay. She has 2 brothers and 2 sisters and we hoped and prayed that one would be a match. Luck again was on our side and her oldest sister came up a perfect match, 10 for 10. So we reviewed our options… a perfect match for a transplant (the better the match the better the odds)… Barb was a little unique since she was young, strong, and in good health (many people are quite ill by the time they even enter the hospital)… we weighed all of these and the various bad statistics associated with each choice and Barb decided she wanted to go for a cure, thus a bone marrow transplant.
So Barb had about 3 weeks out of the hospital… “go out and live your life”, yeah sure. She entered the hospital again for another 30 day stint. Started with getting a CVC put in… 3 lines that go from her heart and exit on the chest… for drawing blood, giving IVs, etc… makes her feel like a Borg (for all those Star Trek fans out there). It stays in for over 4 months.
6 days of chemo treatments to kill her bone marrow… this is when you’ve burned that bridge, there is no going back. As they note in the consent agreements you sign, if you pull out of the procedures after this point you will most certainly die… no bone marrow, no blood, no you. Kind of cut and dried.
A day off the chemo and then the transplant. The transplant sounds like a big deal but it’s basically hanging an IV bag filled with the donor’s bone marrow stem cells. Her sister had entered the hospital the night before and early that morning they harvested the bone marrow from her hips… just 2 holes but about 200 samples… kind of like directional drilling for oil and gas ;-) Her sister was sore for a couple days but that was it… so if you can save someone’s life by being a donor PLEASE do so, it is not that big a deal… especially considering you will have the profound honor of attempting to save another person’s life.
If you want to be a donor candidate the first step is to register… you can sign up by going to “Be the Match” which you can find here http://www.marrow.org . You simply swab the inside of your mouth and send it to them. That’s it. They keep you on file and if there is ever a match they contact you. We were lucky in that Barb had a sibling match… only 30% of folks have that… the rest have to hope and pray that there is someone registered out there who matches up. If you’d walked the hospital halls as many times as I have and watched all those poor folks who have run out of options sweating bullets, you’d join in a flash. I did.
You want to know what your donated bone marrow does?
About 12 days after the transplant Barb’s blood counts started going up… the transplant was working! They call this engraftment… the donor stem cells migrate to the bone marrow and then simply start doing their things… it’s kind of like planting a garden and waiting for the plants to sprout. That’s what your donated bone marrow does… it gives the chance for life. Please register. Young men are the primo candidate for being a donor… they’ve got the best stem cells. Go figure.
Bone marrow transplants are amazing medicine. There are two main types:
- Autologous bone marrow transplant: "Auto" means "self." Stem cells are removed from a person before they receive high-dose chemotherapy or radiation treatment. After these treatments are done, the stems cells are put back in your body.
- Allogeneic bone marrow transplant: "Allo" means "other." Stem cells are removed from another person, called a donor. Most times, the donor must have the same genetic makeup as the patient, so that their blood is a "match" to yours.
Barb is an allo. With allo bone marrow transplants you have to change your thinking about the transplant 180 degrees. When you think of some organ transplant, one of the main issues is your body rejecting the donated organ. With an allo bone marrow transplant you are transplanting a new immune system… so the problems aren’t that your body rejects the new bone marrow… you no longer have an immune system to reject anything. Instead the potential problems are your new immune system rejecting your entire body. Obviously that can lead to some, as they say in medicine, “poor” outcomes. And you don’t want no stinkin’ poor outcomes.
That’s called Graft Versus Host Diseases (GVHD). If GVHD really gets going, it is a VERY bad thing. So after the transplant they give immunosuppressants… in my simply way of thinking they attempt to keep the new immune system “asleep”. If it wakes up, it screams what is all this “other” doing here? It’s not me and it sends T-cells (the primary immune system cells) out to take care of the problem… attacking everything else, which is basically one’s entire body.
Overtime they lesson the immunosuppressants step by step (like 6 months to 1 year) and hopefully gently “wake” up the T-cells… they’ve made peace with the new body and everyone lives happily ever after. But some folks have to stay on the immunosuppressants forever.
After Barb’s transplant her blood counts continue to improve and after about 30 days in the hospital she heads home. But this is a marathon not a sprint… one of the docs uses a marathon analogy to describe the process of a bone marrow transplant… when you leave the hospital you’re at about mile 3 out of 26! This is a yearlong struggle, perhaps longer.
So as you walk out of the hospital you have an immune system which isn’t yours and due to the immunosuppressants, you in effect don’t have an immune system anyhow. Barb does have one… it is in various bottles which sit on our kitchen counter.
Thus you have to be VERY careful about pretty much everything…
- cuts and any damage to your skin - your body sends T-cells to fix the problem but this gets those little ol’ T-cells rolling which can lead to GVHD… and of course any infection can be the end of you
- eating - things that might give a healthy person an upset stomach might kill you
- inhaling – viruses, mold spores… they are nasty critters which can end your life quickly. Keep away from kids!
- And of course just the normal critters and nasty’s which reside on and in all of our bodies… they might decide to make a run which can lead to poor outcomes.
Any of these can be a problem… for the first 100 days after transplant you have to live within 30 minutes of the hospital… not A hospital but THE hospital. This is specialized medicine. If you don’t happen to live within that, you stay in a hotel. Why 30 minutes? Cause this stuff can happen VERY fast and once it gets going… well you get the idea.
Any of these can cause what’s called a cascade affect… something is running wild in your body so they lesson the immunosuppressants to help… but this wakes up the T-cells and they go on a rampage… and it cascades downhill very quickly. One of Barb’s priests noted that he is called to the 3rd and 4th floors (the transplant floors) of Presbyterian St. Luke’s way more than any other place in the entire city. This is incredible medicine but those statistics don’t lie… this really stuffs it in your face that at its core, these statistics are each one some poor sap trying to live another day.
Barb had a bone marrow biopsy at 30 days after transplant and no sign of leukemia… in addition her T-cells were 100% donor and her bone marrow was 64% donor. Had another at 100 days after transplant and still no sign of leukemia… her T-cells still 100% donor and the marrow up to 75% donor… the goal being 100% donor. This will GREATLY reduce the odds of the leukemia ever darkening our doorstep again. The more time we can put behind us without leukemia, the better the odds it never returns. I saw some graphs of mortality rates versus time since diagnosis and it makes one’s heart skip a beat. For the first year it is like a rock falling off a cliff… 50%+ die in the first year. So the farther we can get from January 2011, the better.
So we plug along one day at a time… today is day 151, 151 days since transplant and all is well. Barb’s hair is coming back… she’s got a good jarhead look going right now. As I noted, this is incredible medicine and without it Barb most certainly would already be gone. And as with all major diseases and the fight against them, literally thousands and thousands have died while furthering our knowledge of the battle. I tip my hat to each and every one of them. May they truly rest in peace.