Happy fall, everyone!
It’s been too long since I’ve posted. I kept meaning to post sooner, but I got caught up in enjoying our summer that it made it difficult to set aside time to write. I wrote a post last week, finished it completely, went to post it, and…gone. It disappeared before my eyes and I couldn’t get it back. Is there anything more frustrating than trying to rewrite something that you just finished writing only moments ago? I couldn’t think of anything then, so I left it. But I still owe you a post, and I owe myself an entry back into writing after a summer in the sunshine.
And man, has it been a good one. Despite a cancer diagnosis and frequent panic attacks, this was the best summer we’ve shared together and reminded me why summer is and always will be my favourite season. We spent our summer at lakes and cabins across Manitoba and even into Ontario. We spent it with friends and family and went to a few weddings. In August alone, we celebrated Daniel’s 27th birthday, an anthology launch which included a short story I wrote, our third year anniversary and six months since Daniel’s lung transplant. It's been a full summer and exactly what we both needed before heading back into the fall and winter.
But let’s go back to that last milestone for a minute. Six months since Daniel’s lung transplant, now seven. Can you believe it? I know I can’t. I’ve been looking through pictures and blog posts from last September and I can’t believe how different life looked a year ago. It was last September that everything started building up to February. Frequent infections, hospital stays, and despair beginning to eat away at the hope we had for a future together. By the time we got to February, that hope was almost gone before we got the twist we didn’t expect. The twist that usually comes at the end of a movie, but this wasn’t the end, it was another beginning.
Come August, six months later, life looked very different for us. But we still spent that day at the hospital, going to see a sarcoma specialist about the cancer Daniel was diagnosed with in July. At that appointment, we got news about his cancer, Kaposi’s Sarcoma, bad, good and frustrating. So let’s look at each piece of news one at a time.
The Bad: Calling Kaposi’s Sarcoma a skin cancer is a bit misleading. The skin is just one of the places it can form, and it’s an odd type of cancer because it grows in multiple places at the same time. That’s why they wanted to do a CT scan to make sure it wasn’t anywhere else in Daniel’s body. The CT scan they did of Daniel’s lungs showed a few small dots on it that they suspect are tiny tumors. It’s in his lungs. This means that we’re fighting two things in his lungs now. Rejection and cancer. And of course, the best way to treat one is the opposite way to treat the other. Because he’s on such high immunosuppression, it makes it easier for the cancer to grow and spread, but lowering his immunosuppression would trigger rejection in his lungs. So, we have to walk a fine line as we try to treat them both at the same time.
The Good: One way to treat Kaposi’s Sarcoma in transplant patients is by switching some of Daniel’s immunosuppressants around. Instead of tacrolimus and cellcept, Daniel’s doctors switched him to sirolimus as soon as he was diagnosed. It’s also an immunosuppressant, but targets the body differently. It’s been shown to shrink Kaposi’s Sarcoma tumors and that’s just what has happened with Daniel! A lot of his tumors have shrunk and continue to shrink. Because there has been such a noticeable change, Daniel’s oncologist does not want to do chemo right now, but continue to watch how his tumors continue to react in the next few months.
The Frustrating: Daniel’s oncologist also told us that because Daniel has to be on immunosuppressants for the rest of his life, it is unlikely that we will ever be able to completely get rid of this cancer. Instead, it will become another chronic condition always at the back of our minds. We’ll add regular appointments with the sarcoma clinic to our regular visits with the bone marrow transplant team and lung transplant team. We’ve dealt with chronic illness before. We’ve watched as, despite assurances that it will stabilize, Daniel’s health deteriorates. It’s what led to his splenectomy in 2011, his bone marrow transplant in 2013 and his lung transplant just seven months ago. It’s not right now that worries me with this cancer. It’s one, three, five years from now that worries me.
But all we can focus on is right now. And right now is good. Right now is great. Daniel started a new job at the end of August and went back to school with an online course just a few weeks ago. In six days, we’ll be taking our first out-of-country trip together and spend 12 days in Costa Rica to make even more memories together and celebrate how far we’ve come in the last twelve months. Get ready for lots of pictures! We can’t wait to take in the colours of Costa Rica next week!
Laura
Laura
