A couple of weeks ago I got a message from Rachel who had been in contact with another CDH1 patient going in for her total gastrectomy at Stanford. While it sucks to have such a rare condition, it makes the HDGC community very unique and tight knit. This past Monday I got a chance to meet Michele and her husband Jeff as they were preparing to make their way home after recovering in the hospital for the past week. Jeff and Michele were so sweet and had really good spirits considering the fact she parted ways with a vital organ seven days ago. So we did what I think most post-gastrectomy patients normally do, talk about food. The weird cravings you get when you no longer have a stomach is hilarious to me, however, I did assure her that she will be able to eat a small cupcake and donut holes soon enough. It was crazy for me to think that almost 6 months ago I was recovering in the room right next to hers.
As for the recovery almost 6 months out, I wish it were all lollipops and rainbows! While I have made huge strides in what I am able to eat and how much I can eat, I still have bad weeks. This week the stomach cramps returned and dry chicken is still not my friend. I am thankful however, that most of the things my doctor said I would not be able to eat again, I’ve been able to eat in small quantities. The doctors told me I could not eat steak again, but if it’s rare I can have a few bites no problem! I was told I could not eat cupcakes again, but if I have only a couple bites, it is all good! There are a few things that I do really miss about my old diet that still cause me problems: sheer quantity, salad, broccoli, spinach, rice, anything cold in the morning, and dry bread… while everyone is different, I think that this will be par for the course moving forward and I am OK with that. Every day on my Facebook feed from the Stomach Cancer Warriors and Caregiver page is a story about someone who is going through chemo for stage 3/4 cancer or a family member posting for someone who has lost their fight with cancer and I cannot help but to feel a little bit guilty that we discovered my cancer early enough for me to not have to endure chemo/radiation. To me, those patients are the real brave ones. The money given to research, all the grants, the countless doctors and researchers gave me something my dad and sister never had; a fighting chance. So for me, if I can give back in some small way, by visiting or encouraging other CDH1 patients in the hospital or running a triathlon to benefit No Stomach For Cancer, it’s my way of honoring the brave ones who still fighting their way through the cancer journey.
As for our triathlon training: I have been behind for the past couple weeks because I have not been feeling well, but still managed to crank out a bike ride while on retreat with my staff in Lake Tahoe and 4 mile run yesterday. I’m not in as good of shape as I would like to be two weeks from race day, but I think I have enough to finish my race. One of the things that I’m learning about training is having to use a lot of “gels” on a consistent basis (every 30 minutes). After a 1000ft/4 mile climb in Lake Tahoe I was gassed, feeling light headed and had to pull over to squeeze a gel packet. It’s pretty impressive actually how fast it works on my body and I was able to finish the rest of the climb. Kate has been totally kicking butt on her training and even came in second in her work’s, “Biggest Loser” competition. We’re still trying to work out her winnings, but we think she should at least get her $50 buy in back. Kate has been an amazing support to me these past 6 months and I’m really looking forward to seeing her compete in her first triathlon!
As for my goal of raising $500 for No Stomach For Cancer, Kate and I are still $425 short of our goal. If you would like to contribute, click on our link here: http://www.gofundme.com/trinostomach
Steve Dang 