The Death of Sasquatch and the Northeast

So I'm back in Massachusetts. Back at my parents' house in Wilbraham, a town of 13,000+ people and a suburb of Springfield, MA. Upon arrival, I got flashbacks from a similar time almost three years ago, when I first got chemo. This is the place where I was really introduced to this whole cancer thing. When we got here last Sunday, I found myself lying on my bed, staring at the ceiling like I did back then. Only then, that's all I could really do. I had no energy to do anything else, even watch TV - but that's another story. I'm here in MA now, and let me tell you how I got here.

Rewind: Discharge from KUMed
I think my last post ended with me in the hospital, the chest tube just getting taken out, and the excess fluid in my body. I was pretty mobile before the chest tube, especially for being in the hospital, but when I had that thing in for those five days, my body got deconditioned pretty badly. It didn't seem like I lost a lot of muscle mass (like I had a lot to begin with) through my daily weigh-ins. For example, that Saturday (Sept. 20) I came in at almost 200 lbs. I think I mentioned earlier about my huge swollen feet. My Sasquatch Feet, if you will. I would talk smack on my own feet to my mom, who didn't understand who sasquatch was. In broken English she'd ask, "What is sasquash?" After laughing hard, I explained that it was bigfoot, comparing the creature to my huge feet. I got more Lasix that day, and the next day at weigh-in I had dropped over 20 lbs. I guess I peed out all those pounds. I was literally lighter on my feet, and more mobile. That chest tube really set me back, as did the infection overall.
Everything else was looking better too. The X-Rays showed that my lung was stable. The CMV virus that got activated as my immune system was low, was going away - from 6,000 to 500. Although my appetite and mood weren't all that great, everything else looked good enough for me to get discharged the following day. I'd go back to the Hope Lodge with a take-home pump for Penicillin, and go to the clinic every morning to be infused with Caspofungen. I also got a take-home kit for the shots I got in the stomach every morning and night. Yeah self-administered shots in the stomach, sounds awesome. For the week ahead, my dad was coming back to town that Wednesday. I also had to get another bone marrow that day and meet with the doctor. Then we hoped to find out when I'd be able to travel, if I was going to go to do my transplant at Dana-Farber in Massachusetts, and how my infections were doing overall and how much time did that delay the transplant.

Hope Lodge Week
The Hope Lodge has its plusses and minuses. Last time I was there, I stayed only two days, so I really got acclimated to the place. I was also there on the weekend, when the place is dead, so I got to see a lot of the other lodgers. Although most of the other inhabitants are either twice or three times my age, everyone there knew the deal. Regardless of age, there was a connection there. Meeting new people and sharing cancer stories was always helpful - you learned how other people dealt with it and saw how they took care of it, like how they prepared food. I also learned that you didn't have to be a patient or caregiver to stay at the Hope Lodge. I met a guy who was staying there with his wife, who was a donor. She was a perfect HLA match for her brother undergoing a bone marrow transplant.
That was the cool stuff about the place, now to the stuff that wasn't cool about the place. The responsibility of doing all the meds were on us now, instead of nurses. I'm good about keeping track of pills and all that, because it's been a daily habit for me anyway. The pump is kinda annoying (today is the last day!), but gets really annoying when you combine it with sleeping in a small bed and having to be aware of the tubing so you don't get tangled up or it doesn't get pulled. I can relate to you ladies out there now. The pump has been my man-purse. It's always connected to me (the Penicillin runs 24/7), so I know what it's like to have to do things and try and keep that thing slinged over my arm or close by, although I don't think anyone would want to steal it or could without ripping out the catheter in my arm. Ooo, that would be a bloody mess. The shots, now only once a day, were not and still aren't fun. How would you like that needle in your gut every night? It stings for a while, but it goes away and it must be done. Well, I think it must be done. My left arm hasn't been swollen for a while now, and I still have to get this darned Lovenox shot, for the blood clot that caused the swelling.
The other difficult thing about living at the Hope Lodge is it's like living out of a hotel, and living out of a suitcase. That wasn't too bad, but it wasn't home. You don't have the infrastructure. I described in an earlier post how I finally got the Wifi figured out, but living on the third floor, I hardly ever got a signal. At the hospital, the signal was strong, so I could be online more (my excuse for not blogging in a while, haha). Despite all these things, the convenience of the location outweighed everything else. Commuting from Lawrence, although I'm used to it, takes too much time.

Wednesday: Ups and Downs, Downs then Ups
Wednesday, first thing we met with Dr. McGuirk. He explained my situation; he explained it rather frankly. The fact that I was an ALL patient who relapsed during maintenance chemotherapy was not a good thing. Then he threw up some statistic. Even though he said that I didn't quite fall under this statistic, because I responded well to the re-induction chemo, the survival rate of people in my age group that had ALL and had relapsed during chemo was 10%. That really put the odds on my side... He then went on re-emphasizing that since I responded well, as evidenced from the results of the bone marrow biopsies, that I didn't totally fall into this group. The nurse came in and then he looked at the results from my last bone marrow. While he was doing that (it was like there was a quick switch of heavy focus - from explaining my situation to studying my results), I expanded on his assessment in my thoughts. I'm not a statistic; I'm Darren. Why couldn't I be in that 10%? My dad, who got his masters in statistics, said that statistics, a lot of times have an agenda or opinion attached. Whatever the case I'm choosing to do the transplant because it's the only option I see possible right now. Mary, my nurse and good friend, told me that some people choose not to go through with a transplant. What do you do then? You accept death and just wait for it? It's a risk. One thing that I'm not looking forward to is the quality of life I'm going to have during and immediately after the transplant - horrible (although these past three years as a cancer patient haven't been optimal either). When you're old and you see your body as not being able to handle all that comes with a stem cell transplant, or you don't see the positives by taking the risk, I can see why you wouldn't go through with a transplant. It's an easy choice for me. It's not just about my life. There's been too much time, effort, love and money spent (you wouldn't believe how much money) on me through this disease that I can't not have the procedure. I'd do it several times if that's what it takes (although words can't describe how much it would suck). I guess there would be a point where quality of life would come into play, but that's not an issue right now and I hope it doesn't become one.
Back to Dr. McGuirk. Out of his silence came, "I don't believe this. Is this true? Kristen, get (insert pathologist's name here) on the phone." The results in front of him said that both my blasts and flow were 0%. He wanted to know if I really was in remission or not, so he said the rest of what he had to say - the precautions and the possible pitfalls of transitioning to Boston, if I were to take my treatment there. He said he'd find out what the bone marrow results were all about, and call Dr. Antin (from Dana-Farber). After that I immediately got another CT scan of my chest to check the nodules from the pneumonia, and then got my Caspofungen infusion. He wanted to see me before I left.
Got Caspofungen. Our good friend Nancy came and ate lunch with us, then it was go time.
When I came back to his office the mood was totally different. He busted up in there with three good things to tell me. First, for my marrow results, they were as shown, but the pathologists were kinda scratching their heads about it, so he wanted another biopsy done the next day to make sure (kinda good news, ouch). Second, the CT Scan results showed that the lesions in my lung were almost non-existent. Third, he talked to Dr. Antin and explained the urgency that they needed to take with me, because I had this short window of opportunity to get this transplant in, and Dr. Antin agreed. After all that we high fived, haha. High-fiving Dr. McGuirk doesn't happen very often, so it was pretty significant. He doesn't even shake hands, because he doesn't want to pass germs to other patients, which is understandable, with most of his patients being immunosuppressant. Since I couldn't travel by plane for 6 weeks due to my lung, he said the earliest I could travel by road was that Friday, but he wanted to see me that morning before I left.

The next day I got another bone marrow biopsy. I think it was my 12th one. Abbie, one of the nurse practitioners that does marrows, always talks about how I'm now the standard for their bone marrows. When she did her first one on me, I was explaining what I was into and dancing came up. So I was briefly describing all the styles, the culture and history of both Popping and Locking. So after they were done, I demonstrated some stuff - mainly stuff that didn't involve too much movement. They were impressed that I danced right after a marrow. So now, when anyone complains or cries about having a marrow done, they talk about the one patient (me) that got right off the table and started dancing. I guess I'm a bone marrow biopsy legend now at KU. Well, on this day, it was the same cast from that time, but I didn't dance this go 'round. I had been feeling kind of wussy lately, probably because I got hammered in the hospital the past month and some change. The reunion was kind of funny though.
My dad was in town by this time. He worked during the day, but tried to hang out with us as much as possible. We solidified our decision to take an RV up to Massachusetts on Saturday morning. That afternoon, my mom and I went back to Lawrence to get things together and boxed up to take in the RV. I had to wear a mask in my place for precaution. The place is old and krusty, so the air quality wasn't the best and may have been the reason my lung got infected. At one point, I was in there by myself, sorting things out. It was tiring as hell, because I didn't have much energy and it's hard breathing through those damn masks. Towards the beginning of the evening my parents loaded up both my car and my dad's rental with all the stuff we were gonna load into the RV. We all then went back to the Hope Lodge.

On the Road Again
I saw Dr. McGuirk that morning again, but this time with both my parents. He reemphasized the precautions I should take with Dana-Farber in Boston. If they did certain things, like not being urgent with my case, then I should return to KU. He was confident, however, of the place and that I'd get quality care there. He answered our questions, but the complete bone marrow results weren't in yet. So then I got my Caspofungen for the day and it was off to load up the 'ol RV. While my parents and Mario, who we recruited to travel with us, were loading up and cleaning up the RV. I was finishing up the informational booklet that Dana-Farber sent me about their Stem Cell Transplant program. The booklet was pretty informative and surprisingly thick. It answered a lot of questions and solidified a lot of other things about the process. I already knew kind of what to expect, but after reading, I really knew what to expect. It went through pre-transplant, what and how to prepare for transplant, during transplant, post-transplant, my care team, explaining the different types of stem cell transplants, and more. I'll probably be reading this several times.

The RV was pretty nice. As you can see in the plan, there is a queen sized bed in the back, a shower, a bathroom, fridge, stove, another bed over the driver's seat, and the sitting areas also become beds. On top of that, there is a ton of storage beneath. The RV was great for camping, as for riding, we quickly found out that it was bumpy after we pulled out Saturday morning, after I got my last Caspofungen treatment at the clinic. I was getting nautious, so I took some Ativan to fight it. The other good thing about Ativan is that it makes you drowsy and forgetful, so the trip went pretty fast for me. We drove straight through - 24 hours. My dad and Mario switched off driving as we took I-70 through St. Louis, to Indianapolis, Cleveland, up to Erie, through Buffalo, and home. We did stop in Indianapolis to meet up with friend and former track coach Jon. We messed around for an hour+ and he hooked me up with some good reading material (running books and magazines) for my time out of commission. I slept on the coach most of the trip. Mario slept on the bed above the driver's seat when he wasn't driving. My parents slept on the bed in the back, the bumpiest place in the whole vehicle. It was funny hearing my mom shriek and laugh when it got really bumpy. She says she was a couple of inches in the air a couple of times, but it made her get queasy. The bathroom wasn't fun when it was bumpy, but I won't get into that. Despite the bumpiness, I think the RV was a good choice. The cost rivaled the plane tickets for my mom and I, but it got increased by $400 because it was a NASCAR weekend in Kansas City. Gotta make dat cash money!

Bu-ah-stun

We were all messed up when we got back to our house, because of the weird way we slept on the trip. My sleep schedule was still messed up from the hospital anyway. It took us a while to recover.
The next day Mario and my Dad took the RV to the drop off, but before they could do that, they had to dump the waste from it. I wasn't with them, but I remember their story; how right when they pulled up to the place, an atomic blast quickly attacked their nostrils. It smelled like poo. And apparently lots of it. I'd be dumping that stuff quick and bookin'! I imagine that's what they did too. Mario stayed until Tuesday. He helped out a ton by driving!

On Wednesday, we headed out to Boston. It was a pretty scenic drive. Massachusetts is all foresty - a very different landscape than Kansas. The trees were turning, so it was colorful too. It took about 90 mins to get to the Dana-Farber Cancer Center. I've been there before, but was quickly reminded how huge the place is. In the elevators, there are 16 floors up and like 3-4 floors down from the lobby. On the third floor there's a bridge that runs over the street, connecting the cancer center to Brigham and Women's Hospital, where I'd be staying during transplant.
Being such a huge operation, there were people all over the place. It was busy. Before I met with Dr. Antin, I had to get a lot of blood work done. I guess they had pretty specific requirements for HLA typing. After waiting for a while, we finally were called in to meet with him. Dr. Antin was pretty mellow, a stark contrast to how Dr. McGuirk can be back in KC (but it works out really well because things get done pretty fast). We described my whole situation leading up to this point, and he was pretty nice. He took his time getting to know me, which was cool, considering he is the co-director of such a huge program. We also met with my transplant nurse, Toni. She was pretty nice too. She helped setup the next visit, which was Friday. I had to undergo a series of tests to get approved for transplant.

I had to get blood work again when I arrived at the center on Friday. They had to tests for certain things like HIV, syphilis, CMV, tuberculosis, lime disease, etc,. After that, I had to do a EKG, which was pretty quick, then pulmonary function tests. The pulmonary function tests were slightly uncomfortable, because I had to breathe different ways than I'm used to, several times, and inhaling was still a little tender from the lung collapse. I did OK, considering my right lung was healing. I also met my social worker after the tests. From there, I had to get a chest X-Ray, then get a RVG scan (Gated Blood Pool Scan). For the RVG scan, the nurse drew blood from my arm and added a radioactive substance to my sample. After waiting around for 15 mins, I was called back into another room and put on a table that resembled a PET or CT scan machine. The nuclear technologist then hooked up some EKG wires to my chest and re-injected my radioactive blood into my vein. The table I was on was push under this X-Rayish looking block thing, and then the X-Rayish looking block thing was lowered down so it barely touched my chest. If I was claustrophobic, I'd be going nuts. I lied there for three series of pictures, each one taking approx. 15 mins. It was boring, and I had to sit still, alone in the room most of the time, but it was the last test of the day, so I didn't care much. The point of the test is to check how the left ventricle works in your heart.
After the test, we met up with Ken and Aaron, who are our Boston connections. We also met up with Toni again, who walked us over to Brigham and Women's to tour one of the transplant units. The one we toured was on the 6th floor, and was built in the 80's and renovated in the mid-late 90's. It was one of the few units that had complete HEPA filtration, not just in the rooms. KU's transplant unit also has HEPA filtration. If you leave a piece of bread on the counter, it won't go moldy with this system. The unit was circular, with the rooms on the outside and the nurses' station in the center. Each room was see-through, with glass windows, so the nurses could see if something was wrong. There is a privacy curtain you can control electronically, if you needed it. The unit we toured also had ICU capabilities. Each room had a bathroom, but not every room had a shower in it. Toni explained that back when it was built, showers were thought to be bad for transplant patients. I really liked the tour though, because I could see what I was going to be like for 40+ days. My bald pals already admitted in the rooms were either just chillin' or sleeping. I didn't want to stay there too long though, because I knew the place would get pretty old once I was admitted.
After the tour, Ken peaced out and we took Aaron back to Harvard. We started our trek back to Wilbraham at around 6:30 and the traffic was horrible. The parking lot traffic made sense in the beginning, because of the sheer volume of cars on the road (most only having one passenger, I guess gas prices aren't high enough). As we got out of the Boston area, and past Worchester, the traffic just got stupid though. There was unnecessary braking all over the place and cars were not passing in the passing lane. My dad and I were getting pretty angry too. Due to the traffic, the drive took 30-45 minute longer than it should have.

That's how things are. Now I'm trying to plump myself back up. I lost a lot of weight, because my appetite was low, but I need that poundage for the transplant. On top of that, I'm trying to recondition my body as much as possible, as it'll get deconditioned again.
(note: the post says Wednesday, but I really wrote this on Saturday)