Ok, I owed you all an update nearly a month ago. Between rounds 2 and 3 I ran into some small complications which caused us to delay chemo for 2 more weeks. Yesterday was the end of cycle 3 and I have no more chemo left to do! This is good on multiple levels but I'm also wondering if my body was able to take much more. The past couple months my nueropathy has increased to the soles of my feet and occasionally the fingertips. The numbness should go away over time. I have also started to have a Pavlov nausea response to the clinic at SCCA where just the smell of the place can make me puke. I guess that's my body saying "what the hell did you come back here for?!". My blood counts were also low but OK to do treatment just barely.
I'm not quite out of the woods yet as the delay was caused by a hydrocele in my groin area. We did a CT and MRI scan to double check that it was not any kind of occurrence and the results came back clean. The hydrocele is nothing life threatening, just causes me enough pain to want to sit on the couch rather than go for a walk (in other words, beginning to drive me crazy). Good thing the chemo this week has been knocking me out so I'm sleeping most of the day anyway. I have yet to talk with my surgeon but it looks like it will need to be surgically removed. It is likely a small complication from the previous surgery and will be minor. Hoping to get that fixed soon so that I can fully enjoy summer and get back to some normal living.
It was nice to have a concluding conversation with my oncologists yesterday. We discussed pulling out the port and how we plan to do scans every 3 months for the first year to be certain things are going well. After that it will be scans every 6 months until the 5 year mark.
Thanks again everyone for the continued support.
Round 2 Day 8 (not to mention 6 previous MVAC cycles) and the docs have finally found a small hiccup in my bloodwork. Nothing that will prevent me from getting chemo this week but my creatinine did increase this cycle to a slightly concerned level. The creatinine is a measure of kidney function and it seems that after 8 doses of Cisplatin my kidneys may be seeing some affects. Or I'm just dehydrated. I don't get Cisplatin on Day 8 so the docs believe my kidneys should bounce back in two weeks when I am scheduled to have it. However it also begins to beg the question of whether there should even be a round 3 of this treatment. I have been in uncharted territories for most of my treatment which is a curious spot to be in since the doctors do not have all the answers. Don't get me wrong I love the team I work with at SCCA but there just is no data as to what to do with a 29 year old post chemo and surgery who had metastatic disease. This of course bugs me because as an engineer, I thrive on data. I'm currently scheduling round 3 treatment with the hopes that my kidneys will be back to good function and the rest of my body is hanging in there. My doc has stated that I could stop after round 2 or he would support me going through a round 4 (eek!) but there really is no "correct" answer here. At some point the chemo will stop and we will then enter the surveillance stage. Sounds like we will scan every 3 months at first than every 6 for the first 2 years. On most of the reports I have read, 2 years seems to be a bit of a magical number. If you can make it that long without a relapse chances are you are home free. At 5 years they call you cured and send you on your way. Of course I'm planning on being here longer than that.
I'll let you know how it goes in two weeks if we start round 3 or not.
Sorry for the long delay since my last post, it has been over a month. Let's see if I can fill you in on the current happenings. I decided to go forward with the PGC treatment, might as well throw the kitchen sink at it. Treatment started April 10th so I am already through 1.5 cycles. So far it hasn't been as bad as the first regiment but it ain't no walk in the park. For those of you who missed it, my hair did grow back between cycles. It managed to come in with no pigment at first so it looked like I had frosted the tips of my beard. Alas though it has fallen out again and I have gone back to the cue ball look. I was feeling good enough to go on a run/walk for the first time in six months last weekend. Probably ran a little over half of the two mile trek which made for some very sore legs for a few days. Definitely got winded quickly but not nearly as bad as when I was in the last few treatment cycles of MVAC. Hopefully that won't get worse and I will be able to train for the Blue Lake Sprint Tri. I have also managed to start to put a little bit of weight on but the chemo still slows the appetite. If all goes according to plan, my last dose of drugs will be at the end of May. Definitely something I will be happy to be done with and hopefully the hard part of all of this will be behind me after that.
I have been out enjoying the warmer weather and managed to get on the bicycle a little. Like the running, the legs are weak but the riding is fun. I am currently up in Seattle until the end of next week likely so if you're around and want to meet up drop me a line.
Met with the oncologist this week. Thankfully they got my case reviewed by the tumor board and they came back with a consensus, more chemo. Yep, you read it right. There is consensus that there is no detectable levels of cancer currently in my body but the pathology report from that single lymph node that had cancer had it on the exterior of the node. As a result there is concern it could have flaked off some cells that are swimming around. Considering that last time it took the cancer less than two years to spread to all those lymph nodes from an undetectable state, we want to go after while it's retreating. The good news is we aren't talking of doing dose dense MVAC again, I'm done with that nastiness. Instead I have a couple options: GC or PGC. GC was one of the options we were looking to do at the start of treatment but decided to go for a little bigger gun. The side effects shouldn't be as bad as the MVAC but the cocktail still has Cisplatin in it. The PGC option adds another drug, Paclitaxel, which could aid in clearing out more of the possibly existing cancer. I say could because the head to head trial between the two didn't quite meet the statistical requirements to show a valid advantage, but it was close. The concern however is it is known to cause neuropathy, damage to nerves, and I am starting to already have a numbness in my toes due to the last treatment regiment. Currently it isn't painful but it could progress to be so and some damage can become permanent. There would only be 2-3 cycles of treatment and each cycle is 3 weeks so only a couple more months to push through. I get to pick my starting date but we are planning to begin in 1-4 weeks, sooner the better but I want to see if I can add some pounds first. The appetite is doing ok but the weight gain has not quite gotten traction. I figure the body is using a lot of energy to mend my insides. Recovery is still coming along slowly. I have noticed I can walk at a decent pace now with less pain and the swelling has gone down significantly, almost non-existent in the mornings.
As I've said, I have a couple decisions to make and I won't be returning to "normal" life for at least another two months. I was anticipating that this would be one of the recommendations but it wasn't until I got in the car to leave the doctors office that it hit me, a part of me really wanted the surgery to be it and no more chemo. It was definitely a torn feeling as I do believe more chemo is the right thing to do for the long run but knowing that I have to go through with poisoning my body again is tough. So we're going to aim at a possibly existing mosquito with an hatchet and hopefully cleave that buzzer into pieces.
Well I'm making progress. The wound area is not nearly as sore but I'm still not using any abdominal muscles, my sauntering is becoming more of a steady walk, and getting up and down from a lying position has become easier. I've been staying at my parent's house since Friday and it's nice being home. My grandparents have been dropping by to make me lunch and go for an afternoon walk which is a nice breakup to my day of reading, naps, video games, and netflix. Next week will be follow up appointments with the oncologist and surgeon. I expect to have a better idea as to next steps afterwards and if any more chemo is in the near future. Part of me definitely doesn't want to go through with anymore of that and another part says lets kick this cancer while it's down. There is no known cancer in my body at this time but there still may be concern of small sites due to the small amount of live cells found in one of the 24 lymph nodes. Either way, recovery from the surgery is top priority so that's what I'm focused on.
For those of you I haven't seen in awhile, my hair growing abilities have returned. I'm sporting a decent beard and tuft of hair on top of my head. It's all coming in full but the patch that my nephew pulled out, that area is a bit sparse. I plan to be back in the 'couv in a couple weeks.
Getting released from the hospital ain't too shabby of a birthday gift. After keeping solid food down yesterday they decided I was good enough to be on my own. I am feeling alright, off all pain meds, and can saunter around like an old man. We celebrated tonight at my brother's house and it was great to be back. This is definitely going to take a couple months to heal fully but we are off to a good start. Barring any late complications (this surgery it is fairly common) I will head out to the valley to recover at my parents' house for a couple weeks this Friday.
Holy cow! Surgery flipping hurts sometimes. As you can imagine this week has not been the smoothest and I'm pretty sure has been one of the tougher ones in my existence. I've been saying it all along but support from family and friends is huge in these situations and all day and night I have had someone by my side to help aide me through this and I just have to say a big thank you to all who have gotten to visit or send your well wishes. My attendees here have kept me posted throughout the week with your messages. Today I am feeling much better than just a couple days ago and able to walk normally (still no ab workouts though). I have found that surgery is a bit different than chemo in the sense that after surgery is set in motion, there is not a choice to cry uncle and take a break. I also wanted to reiterate how big of a success this surgery was. The goal of the surgery was to pull out all the cancerous tissue and sew me back up to heal with no cancer left in the body. At the end of at least an 8 hour surgery, my stellar team here at UWMC managed to remove my bladder, prostate, and 24 lymph nodes. They then took a 60 cm section of my small intestine and created me a neobladder (I was lucky enough to have this option as there was no cancer in the urethra, they tested it during surgery). It took until late Friday evening for them to finish up the pathology report from all the removed tissue and Dr Wright came in on Saturday morning to give me the news. They found no cancer in the bladder or prostate, no cancer in the lymph nodes highest in my chest (highest risk), and only microscopic living cancer in one of the smaller nodes next to the bladder that was surrounded by dead cancer. It was great to hear that the chemo had been so successful and that we managed to pull out everything that was affected. Tears of joy my friends!
I'm now waiting on my bowels to decide to play nice with each other once again. The last few days have been full of a forward/backward movement that I must say is not fun. The scar is not quite as long as I was originally thinking but it is still 6-8 inches long, mostly below the belly button. If I can manage to keep some solid food down for a day I will be on my way out of here and likely recovering at my parents house for a couple weeks. Not sure how long the rest of recovery will be but I think I'll be taking it slow and the hard parts should be behind me. I may post more details of the past week later but it may not be the most pleasurable read.
Ferlan and friends, see you in June for the sprint triathlon :)
So it's been a few weeks since I last updated. I have been enjoying my newly found no chemo freedom and I have good news! The latest scans showed more reduction of the lymph nodes and no spreading of the disease! As a result, the next step is surgery which is scheduled for February 27th.
That's the high level of what is going on. That last round of chemo was rough and put me out for a solid week before feeling half normal. The extra week of recovery has been noticeable though. Last Thursday I finally got back into the pool and managed to do 12 laps. I felt great besides needing a break between each one to catch my breath. It was good to do something more active than a brisk walk and I still felt decently strong in the pool (for my swimming buddies, I managed a lap at 40 seconds). I also managed to go snowshoeing with Lorri for about 6 miles on Sunday, not too shabby.
It was also good to spend a week plus down in the 'couv hanging out with friends and coworkers and not having to get plugged back into the chemo drugs. I was definitely dreading this last scan result. It's like a test you're going to take that studying hard won't help you and after the scan is done you still have no idea how the results will pan out. Thankfully my results were good.
Thanks again to everyone for the continued support and well wishes. I feel like we have made it through another chapter in the cancer saga and are heading towards recovery.
Here I am, sitting and getting my last scheduled round of chemo. It has been a bit of a journey to get here but boy am I glad the end is only hours away. I was a little concerned that I wouldn't make it this far from some of the recounts of others' experiences but my body has continued to be strong and resilient. My blood work even improved in some areas this last round, much to the amazement of the docs. I did manage to catch a small cold last week that is still hanging on but it is on its way out. As a result of still having a bit of a runny nose, I'm wearing a mask and in isolation from the other patients here to help prevent those with compromised immune systems from catching my germs.
Here at SCCA (as in most medical facilities) it is commonplace to see people with masks on. I do find it interesting how our culture perceives people outside of medical facilities who wear masks. I know my initial reaction is that they are either paranoid of catching something or infected with the plague. In reality it would probably be better for all of us if we wore a mask when we know we are infected with some sort of communicable disease. In my travels to China I have observed many people wearing masks in public areas and it seems to be more accepted. They are in fact doing everyone else a favor in not trying to infect everyone. I have even seen some masks that have designer patterns to be more aesthetically pleasing. I guess in areas with such high population density it is probably a good idea to do whatever you can from preventing disease from spreading (Hong Kong is nearly the most population dense country in the world with over 6000 people per square km, the USA has 31/sq.km). Anyways, enough soap box talk.
After today, the doc is giving me a 3 week break before we do scans again to assess the situation. I will then talk with the urologist surgeon to figure out our plan of attack. It won't be minor surgery and I may even get to stay in the hospital for a week afterwards (my first hospital sleepover, I won't forget my blanket). I am still nervous and hopeful for good scan results as this is the next pivotal checkpoint. We are hoping for tiny tumors and no spread. If things are moving the other direction there won't be much point in doing surgery. I'm very thankful that I have been able to survive through this treatment with minimal side effects. I'm very much looking forward to be able to get back to some regular exercise so that a flight of stairs doesn't put me out of breath and I don't require 16 hours of sleep in a day. Hopefully that is only a short couple months away.
