On 1 October 2013 I would have celebrated one year cancer free. What an amazing thing. One down and four more to go. I had to hold off on that celebration as some things got worked out. It was tough at times because I really wanted to scream at the top of my lungs that I had kicked the shit out of this thing or something. Instead, I kind of stayed silent. I was with a group of friends after a run having a beer when it came to me and I jotted this down quickly so I could share.
“Sitting here around people with the knowledge I have. Not telling them is like living with a shame. I won’t pretend to know what it is like for a rape victim but I think I feel some of that. It is odd, these people (the Team) may be the best to handle this but I am still silent. Maybe it is still because there is some uncertainty as to what it is. At least there is some hope.”
I am sorry I could not tell you guys but I was sure glad to be there with you. I had a lot of fun and shortly after I wrote that my spirits lifted. Beer, pizza and the Team really helps. So it daily double of a nasty fungal infection and cancer relapse. So this is sort of how it went down.
It was going so well. It was July and I was feeling great. I was running quite a bit and things were progressing. I had been off of any juice for two months and we were all considering plans for the future. The stem cell transplant was off the table and we were looking at a stem cell collection so we would be ready in case. But that was where it went all wrong. I had an appointment with Doc Weiss after a CT scan and he dropped the boom on me. My left lung was showing something.
We talked and it was probably a fungal infection so I went back on the micafungen. I had my PICC line taken out two months prior so that meant I was going to get stuck. I really hoped that my veins had recovered from the abuse a year ago. I had false hopes. Andrea had a fun time trying to find a good stick spot. After several trials I gave up and let her take the back of my hand. Honestly it was not that bad. It hurt going in but afterward I had quite a bit of mobility.
Now I was a real bastard at times. I was running on Saturdays prior to coming in for an infusion. Therefore, I was quite dehydrated and my veins were even more uncooperative. My rescue ninjas were frustrated till I just decided to give up my one good vein each Saturday. There was also this new system at the infusion center that printed out my meds list every time I came in. That list is a couple of pages long with a cover sheet. I was really pissed at the waste and tried to opt out of it. Eventually I got back at them by reusing the paper.
I should have been an aeronautical engineer. They enjoyed the entertainment or at least they pretended like they did. It was weird as I started to see the staff there and talk with them. They were surprised to see me and we discussed how it is weird. You get to know these people and become quite friendly with them but deep down they hope for the best. That is you get better and they never see you again. I feel the same way. Though I had gone there on occasion and stolen coffee it was not the same.
During the first couple of weeks on the micafungen I was collected for stem cells. This is a most unpleasant process. They inject growth factor to have your bone marrow make more stem cells and then they put this catheter in your neck. The bone pain from the growth factor was not fun. I had rough long run during that and it was not my worst run but it was in my top 50. It is weird because in order to get the stem cells they have to literally pump all of your blood out of you and filter it and pump it back in. Honestly, it was not that hard. I slept during the process and after one day of collection I was done.
After about a month I had another CT scan and no it was not done. This was okay. Fungal infections like this take a while to respond to the medication and the spectrometric measurements always lag behind. I was cool as a cucumber. I was on top of my game. My training was going great and the Rock n Roll Philadelphia Half Marathon was coming up quick. Check out the race report. It rocked and I was amazing with the help of the Team. I was working on top of the world. Doc Weiss did want me to get a consult from Doc Evans about a surgical biopsy. What a mistake that was. I like Doc Evans but he wanted to take a lobe of lung out. Whiskey Tango Foxtrot! I only have five of those and I know that we were looking at a biopsy of some of the more damaged lung parts but come on. Space and I were not pleased. I got over it quick because why not. On a side note, Doc Weiss took me off of cyclosporin which is a immunosuppresent to see if my on immune system would kick in and help with this infection.
So it was on like Donkey Kong and I had a CT and PET scan in October. I wasn’t worried. The worst part is moving your arms after the PET scan. You spend about 45 minutes with them up over your head while not moving. Well, as you might guess it was not only bad but it was getting worse. The PET scan showed a couple of spots that glowed like a 1000 watt bulb. We were entered in to full biopsy mode. One problem though I was still feeling great. I was ramping up my mileage and the Monster Mash Marathon was coming up real soon. I was on such a role there was no way I was missing that.
Doc Weiss said it was time to go on with that surgery and we put the slam down on him. Really we just opened up a new possibility with Dr. Hehn better know as Boyd. He was the pulminologist that has been in my lungs the most and most recently. Space and I wanted get his input about it prior to the cutters getting all up in me. Weiss agreed and we met with Doc Evans and Boyd on the same day. Actually, Doc Evans had already consulted with Boyd and agreed to a bronchoscopy as a first step. I was in.
First thing was first. Boyd wanted to see what my lung function was before any surgery. So up to nuclear medicine and they injected me with technetium. When I asked me what it was that I was injected with they told me and told them it is the lowest weight element without a stable isotope. The doctor learned something new that day. I love chemistry. It has maintained such a wide open universe for me. As it turns out my left lung is crap. Over 75% of my lung function comes from my right lung. Well at least some part of me is conservative. Before the bronchoscopy I went and ran the Monster Mash Marathon. It was awesome. I cannot wait to get to that race report. Two days later Boyd asked me how the race went before he had me knocked out and lung scoped. Long story short. The results were inconclusive. So off to surgery.
At this point it was the end of November and thanksgiving was upon us but best of all Doc Evans was going for a new approach. He was going after a lymph node adjacent to my left lung and a wedge cut out from the upper left lobe where there was some good glow. I went in for the surgery and had to wait and wait and wait. I could not eat so I was getting real cranky. Naps were helping but not enough. I was taken from the pre-op room to the operating room area. There a couple of docs came and talked to me and explained to me what was going on. An anesthesiologist came by and put two elephant tranquilizer needles in the back of my hand and my wrist. He was talking more about the procedure and mentioned that they would probably use the robot for the surgery. I immediately asked if it was Three Laws Safe but all I got back was a puzzled look. What a shame. I am surprised I made it out of there alive.
I woke up with two chest tubes in my side and a foley catheter in. It was not a very happy time. Always avoid a foley catheter and chest tubes are a bad idea. Taking each of them out is beyond description. Needless to say it hurt. The good news is they gave me happy button for the pain. It was fun but it made me itch. After two days of observation I was out of the hospital and getting hungry for Thanksgiving. I tried to be patient and waited an entire week before calling for results. They were not in and I was told to wait till I saw Doc Weiss in two weeks.
So there I was. I had just gotten my stitches cut out from my side by Doc Evans. They were tough to get out. It hurt and he kept apologizing and backing off. I tried to convince him to just keep going. Pain is temporary except in torture which this was. He got on with it and they were out. They sucked and I determined that there will be no more major holes put in me for a while. Doc Evans wanted to know if I wanted the biopsy results but I declined. I wanted to stay ignorant for a few more hours. Back at it. Sitting there in room 24 with Space just waiting for the inevitable. Doc Weiss comes in and sits down. I ask him to “sock it to me and if the results were inconclusive I was going to scream.” Actually, my reaction may have been worse. Here comes the problem. He rambled. There was good information but it all boiled down to this. I do have a fungal infection and that needs to be taken care of quickly. Then the R word. Relapse. The cancer was back and a new fight was on.
Fucking cancer. After we take this fungal infection out with some new harsher drugs we will take this cancer on with a new chemo regimen followed by a stem cell transplant. We will kick this. I just have to continue fighting and running. I cannot forget that I have the Disney Dopey in less than a month. No reason I can’t have some fun along the way.
Filed under: Grey Matters, Hodgkin's Files, Running | Tagged: biopsy, Disney Marathon Weekend, Fighting, Hodgkin's files, hydration, lymphoma, marathon, relapse, Surgery, Team In Training, training | 4 Comments »