It’s been almost a month since Rich had his pet scan and was told that they didn’t see any active melanoma. His diabetes is still a major challenge and he’s frequently frustrated with that but he’s feeling pretty good.
I am starting to feel more like my old self and find that I’m looking forward to things again. I can’t even express how good that feels but I’ll save that for another post.
Having cancer really does change people. I’m seeing another side of Rich that I’ve never seen before. He’s always been someone who would help anyone who asked but it’s always been rare for him to just jump in somewhere and offer his thoughts on something they may be going through. I have learned so many things about Rich since he was diagnosed.
When he was diagnosed he joined a forum for help. He didn’t know anything and has asked questions along the way. I didn’t join the forum but I regularly read the posts and I highly recommend it. The people are amazing and have a wealth of knowledge, they are caring, and they are always willing to share. Here is the direct link to the patient forum since it can be a little hard to find on the site.
Once Rich started treatment and had personal experience of his own to share he began to respond to other people who posted on this forum in hopes of maybe helping someone else.
He donated a stool sample to “poop for a cause” so research can be done on how gut bacteria can affect different treatment and cancer related things. I saw that big box delivered to the doorstep and when I asked Rich what it was I smiled inside though I told Rich that I didn’t want to know anything about how he had to go about sending the sample back.
When we first went to Yale the doctor asked if he would mind donating blood. He explained that there was a doctor there that was doing research on people who developed type 1 diabetes from treatment. Rich jumped at the chance and let them take several vials or blood for research.
Recently, Rich was interviewed by someone who was planning to write an article about how immunotherapy can cause diabetes in a very small number of people (less than 1%). Rich agreed to the interview for two reasons. One he wanted to share his story so that anyone else who gets diabetes as a side effect from immunotherapy would know they aren’t alone. He struggles so much. He has type 1 diabetes but it seems harder to manage than regular type 1 and his doctors aren’t as familiar with it. Two, the research they are doing is to try to figure out which patients may get diabetes from the immunotherapy before they go on it. In Rich’s case he probably would have made the same decision but for some people they may choose differently. The risk could be just too high for them. Both doctors and patients would also be more aware If a patient calls saying that they are urinating frequently or that they are extremely thirsty the doctor should see that as a red flag. With side effects, everyone is aware but with so few people getting diabetes sometimes it’s overlooked until a person’s glucose level goes sky high and they end up admitted to the ICU. The research may also help others with type 1 diabetes that didn’t develop it from immunotherapy. Many of these people are children. Not long after Rich got diagnosed with diabetes we were talking about children having it. Both of us agreed that a parent of a child with type 1 diabetes must never want to let their children out of their sight for fear of their child’s sugar dropping too low and them going into a coma. When Rich read the article he liked it and said how he hopes that it helps someone.
Having melanoma has changed him and I don’t know if he realizes it himself. He is giving back a part of himself to others and I believe that is one of the best things a person can do. He’s experienced a terrible disease and dealt with side effects from the treatment. By sharing it with others he is taking an awful experience and is using it for something good.
He wanted to do this blog and he posts frequently. I’ve read what he’s written and I am always amazed at how much he is putting himself out there. I’m the babbler of the two of us. I’ll share almost anything but before Rich was diagnosed I couldn’t have imagined him sharing the way he has here.
Lastly, we go to a melanoma support group at Yale. It’s wonderful. We drive almost an hour and a half to go to it because it is a great group of people. We feel understood when we go and people there share their stories and many are very inspiring. Everyone is always willing to listen and offer support. (That might sound like a no brainer but this group goes above and beyond in offering support). People share things they are doing just for fun too. In the past, I’ve done many things within a group with Rich and he’s usually pretty quiet. In these meetings, Rich opens up and shares every time we go.
While all of this may seem minor, to me it isn’t. I’ve watched Rich go from a quiet and reserved man to someone who is sharing deeply with others who are going through this. Melanoma is nasty, diabetes takes its toll on him, and the worries he has had and is facing are not easy but through all of this he has become a person who wants to jump in and help when he can so that someone feels cared about or could possibly be helped down the road.
Seeing Rich step out of his comfort zone and so willingly reach out has been wonderful. He truly is an amazing man.
For the record, I love seeing boxes on the doorstep, especially if I don’t know what’s in them, but if any more big black boxes show up on our doorstep I’ve vowed to not ask what they are for. Last week another smaller package turned up on our doorstep. When I saw a doctor’s name on the return address I figured it was best to just let Rich open it and not ask too many questions. I didn’t know if he was planning to send some other body fluid through the mail or what. (I’m happy he is eager to help and fully support it but I am glad that I’m not a mail carrier having to deliver those black boxes back). The recent package was a T-shirt which I’m sure Rich will proudly wear to help spread the word. After all, it’s a great conversation starter.