Happy Halloween everyone! I hope this finds everyone enjoying the beautiful fall weather where ever you are. It has been little awhile since my last update and it’s funny because usually I just knock these things out in an hour or so but I have struggled with this one a little. I had almost finished a posting several weeks ago but we hit a bit of a “pot hole” on our previously smooth course and I put it aside. I half way toyed with the idea of just telling you all that we had just returned from spending a lovely month away in Tahiti but then thought better of it. Of course my motivation is not to sugar coat reality but I do think there is a fine line between recounting a situation and getting caught up in the story about it. This may or may not resonate with you, but have you ever noticed that far too often the “hard” part about things that we experience (a missed opportunity, a broken heart, a lost job, a mistake, a lie, a nasty comment or really pain of any kind) are not the actual events but the story we tell ourselves and everyone else about it? In reality the event happened only once, but it happens a million more times in our minds as we replay it over and over and layer it with all the “should’s” and “shouldn’ts”, the guilt, anger, sadness, (feel free to add in any others) and try to change something that is already over and done with. So what happened a day, a month, a year or 20 years ago causes us continued pain when in reality it is just the story about it that keeps us stuck in a revolving loop. And that in turn allows us to feel really sorry for ourselves, have everyone tell you how awful it is, how unfair it all is and a whole bunch of other things that do nothing productive for you. It’s really kind of silly when you think about it and, in my opinion, is a colossal waste of time. Anyway, kind of a dramatic build up but is why I have been very careful through out this process not to focus too much on the details both personally and with others as not get sucked into the “story” of it all. I choose rather to focus on what is happening right now, and right now is really good. And if the next right now isn’t, it will be over in a little while and will be really good again soon. So my dilemma was how to update those that love and support us about the “pot hole” while staying away from the “story” about it. So here’s what I came up with…just think of this next part as a story that is over and done with but one that will bring you up to speed on where we are today.
Once upon a time…no, I’m just kidding! Here’s the deal. In the past month I’ve become a bit of a frequent flyer at the luxurious Hotel Northside (Northside Hospital for those of you not from this area) and is why we’ve been a bit MIA for a while. Shortly after my last posting I had a brief two night stay for a fever that resolved quickly with some general antibiotics and wasn’t that big of a deal. Soon after that we started the scheduled stem cell collection process. I have to pause here and tell you what a truly amazing process it is. For the first time since this all started my medical interest trumped my personal experience and I wanted to know all the details. Prior to that I chose to focus more on what I could control, my heart and mind, and not get caught up in the nasty (and crappy) details of the procedures and treatments. But I gotta tell you, this is pretty fascinating. I’ve posted a photo that shows the machine and my cute little stem cells (or my “clean slate” as I like to call them) getting ready for a deep sleep for a little while on ice until they thaw them out and wake ‘em up for my transplants.
For the harvest they hook you up to a machine that cycles all of your blood about 4-5 times over and as it does this it spins off the white/stem cell layer and the rest is returned to you. So the blood loss is minimal and the white/stem cells that are collected are taken down to the lab and spun down further to isolate just the stem cells (which are basically cells that haven’t decided what they want to be when they grow up and can become whatever your body needs at any given time) then they are counted, tested for any bacteria, viruses, etc and frozen until they thawed/woken up at a later date and injected back into my blood stream (the transplant) two days after each of the two high dose chemo treatments. And if that weren’t enough, they some how find there way “back home” into the bone marrow of all the bones in your body. Kind of like salmon swimming back up stream from the ocean to the exact area in a stream where they were born…amazing! If that does not show the Divine intelligence of the body, I don’t know what does. The doctors even tell you that it’s not fully understood how it all happens, but I’m pretty sure I know what’s going on! :)
Anyways, because my treatment requires two high dose chemo/rescues, we knew from the beginning that we needed double the amount of stem cells prior to starting the first high dose and were told that we needed between 4-10 million stem cells collected to ensure the best outcome and quickest recovery. So 4 million (2 million per transplant) was our minimum goal. Game on, I had a task! Each day I went in for about a four hour harvest and would get a phone call later that evening telling me how many we had collected and if we were to come in the following day to get more. After three days we had 4.1 million and everyone was thrilled that we had reached the minimum. We were told to take a day off and come back the following day to do one more collection. This is where the “pot hole” comes in…suddenly it was like I had some how fallen off the side of the mountain I was climbing and was free falling in the wrong direction.
At about 5:30 on the morning I was suppose to go back in for my final day of collection I woke up with shaking chills. I took my temperature and it was under 100 degrees so I went back to bed (we are told to take our temperature twice daily and to call ASAP if it is above 100.5). An hour and a half later the chills were gone but my temp was 103+. Game over, do not past go, do not collect $200…and we headed into the office. Well, things went down hill pretty quickly from there and within an hour or so of arriving at the clinic I was in full rigors. For those of you who don’t know what that it is, it’s shaking chills on crack rock. I had read about it in school but had not actually ever seen it, let alone experienced it myself. It’s the body’s way of creating a quick, aggressive reaction to an overload of toxins given off by bacteria in your bloodstream. They had flushed my chest catheter when I got there after drawing lab work which apparently ended up spewing out a bunch of this bacteria into my system. So as the nurses scurried around throwing up bags of antibiotics, poor Neil had to watch as I basically exorcised a demon. It was like I was involuntarily doing a really poor rendition of break dancing moves from my youth as all my muscles contracted. Apparently they were not impressed with my moves because I got a one way ticket straight to the hospital.
I will save you all the gritty details and sum it up in a nut shell by saying that over the next 5 days I had my chest catheter pulled, was taken back to surgery to have my other implanted port removed, had a rockin’ headache (to put it mildly) for about 3 days and was told that the last day of my stem cell collection had to be thrown away because it was contaminated with the same bacteria that had landed me in the hospital and we’d have to start the whole process over in a month when the infection cleared. Not exactly the course we had expected and by the fifth day I knew I just needed to get the heck out of there before something else happened. Have you ever found yourself in one of those situations where the snowball keeps getting bigger and bigger and gaining more and more momentum in the wrong direction and you’re left wondering how you got there to begin with, let alone how you are going to stop it, turn it around and somehow find your way back to where you started? Well, that’s about how I felt. So I left, OK, ran out of there with a new catheter in my arm (I’m starting to resemble swiss cheese with my growing number of poke holes from my all the various lines, catheters and surgeries thus far) to give me IV antibiotics via a pump at home in addition to an oral version. So for a couple of weeks I toted around a portable pump in a fanny pack that was set to go off every eight hours…I swear the cool factor keeps getting better and better! A fanny pack…I mean, come on! There’s nothing like curling up every night with an IV pump in a bag slung across your chest so you don’t wake up in the middle of the night and walk off without it by accident.
As an aside, the poor kids in our neighborhood don’t quite know what to make of all of this because one day I walk out in street clothes and a cute hair cut (wig) and later that same day I come out in workout clothes, no hair, a baseball cap, mask and pump hanging across my chest. Poor things! It’s actually pretty cute. One of the little girls who lives next door came up to me when I was stretching outside our house after a workout and she asked “Why don’t you have any hair? Mommies are suppose to have hair.” (Apparently I am a “Mommy” since I am over the age of 12) I explained to her that I had a procedure that made some of my hair fall out so I had shaved my head. And after thinking about it for a minute she responded “Oh, OK.” and ran off. A couple weeks later I was stretching again and the same little girl was playing with a friend who, in a classic childlike “whisper”, yelled across the cul-du-sac “Hey, who’s THAT?!” To which our little neighbor responded “Oh, that’s just the lady next door who shaved her head,” and off they went. Too funny! It was all I could do not to bust out laughing right there on the spot.
Anyway, back to catching up everyone on where we are now…I have finished the antibiotics and am back on track. I go back into the hospital on Monday to have the chest catheter put back in and be admitted to receive an experimental drug that will help finish the stem cell collection so we can get the rest of the little guys on ice and move forward. We are now scheduled to start the first high dose chemo the week of November 10th, which is ironically also the week of my birthday. Kind of a twisted gift, but when you think about it, it truly is the gift that keeps on giving…the first part of my deep cleaning and clean slate :).
See what I mean? Enough with the details, right?! So the stuff I choose to focus on are things like how good I feel right now and being able to go for nice long walks out in this beautiful fall weather and moments like the other night when Neil looked over at me and, mid-conversation, told me that I was more beautiful to him now than I ever was before and even though I had a bald head, a catheter stuck in me and an IV fanny pack of medication on at the time, one look at him told me he meant it. And that doesn’t even begin to mention all of the lessons and insights I have gained because of this at 31 years old that some don’t get in an entire lifetime. So see, why would I dwell on what’s over and done with and tell myself silly stories about things I can’t change when I can focus on all that good stuff? But that is just my little story…
All my love,
Oh, I’ve posted some new photos of our ever growing “Team Alyssa” that my best friend, started. I receive a card and photo from friends every week or so with them in the “team jersey”. She knew how hard it was for me not seeing all of my friends because of my “house arrest” status so she thought she would bring them to me! I love it and will continue to post them as I get them to share with everyone.
To all of those who continue to send cards, emails, texts, phone calls and who continue to pray for us…you have showed us such incredible kindness and generosity and I am truly humbled by your example. My wish for each of you is that your gifts be returned to you multiplied many, many times over. There are no words worthy of how grateful we are to each of you and everyone else that has helped us on this path.Tweet