Ten days. I've been slacking.
It's been a very full ten days - and I finally have a chance to get my head around all we've been working through. I can't decide whether time is moving faster or slower...it depends on the moment. Crazy.
One of my sisters came out to visit last weekend. She was here to help with kids, help around the house, etc. What was interesting was that where she helped me the most had nothing to do with the kids or the house.
I've been working really hard to be at peace with my foot. I have a hard time looking at it and really accepting this new, mangled piece of my body. Chris, from the beginning, has been telling me that my foot looks great. He rubs it to make it feel better and he washed it when the bandages came off. This is just who my husband is...he sees past things that I tend to get hung up on. When my sister was here, she looked at my foot, held it, and even painted my toes (clear...but still, painted) - and she didn't blink an eye. She didn't flinch. She held my foot and looked at it - and she helped me to see it as she did. It's still just a foot. I am now able to touch and exam the amputation point -- and not cry. She gave me such a gift.
We flew out to Pittsburgh this past week to meet with Dr. Tarhini at UPMC. He and another colleague at UPMC have been the co-authors to many studies around interferon. From what we've been told, he is one that is on the leading edge around melanoma. The visit started out a bit rocky...not being helped by the fact that I tend to dread and expect the worst from any visit with an oncologist. We had an 8am appointment -- and I don't think we actually saw the doctor until after 9. Then, a nurse came in and asked us what we were hoping to get from this visit. Chris about walked out. This guy has been on the phone non-stop and has been sharing from the get-go what we were hoping to achieve. We just kept looking at each other like "we jumped on a plane for this??". Yikes. But then, we met the doctor. For the first time, someone gave us very direct, practical information about what we were facing -- and it was delivered in a way that actually gave us hope. Hope that we could get through the treatment and hope that it would work for us. He used the word "cure" -- twice. We recognize that a cure might be a stretch, as my risk will always be there -- but it is a word that hold hope. For the first time, at a doctors office, Chris teared up. We haven't been offered a lot of hope along this journey. We finally got the clarity that we were looking for. He also highly recommended our oncologist that we were tentatively planning on working with at home. We have been getting positive feedback about our doctor -- but this finally sealed the deal for us. His nurse also came in and gave us more practical, usable information about how to get through the treatment. Basic stuff -- like, do your shots at night so you can sleep through the worst of it. I like information that I can use.
We got home and the next day, met with Dr. Amatruda - our local oncologist. We went in with our minds made up to follow the high dose / 1 year regime with Interferon. Interestingly, Dr. A initially tried to push us back towards the PEG regime. I finally realized, which I should have done sooner, that every doctor is going to have different a philosophy - and different approach. There is no clear if you have x then do y with melanoma...although Interferon is the closest. That said, after talking more about the toxicity and challenges of high dose, he was supportive of our plan - and ready to get things rolling. I will start treatment on the 7th. I really wanted one last full week for Chris and I to have just our family at home, time to focus on our girls, time to see some friends, time to get a little bit stronger. One last week of something that felt close to normal.
One of the toxicity challenges with Interferon is depression -- especially the first four weeks on the high dose IVs. So, I've started on Zoloft to pre-empt the depression. Chris is in charge of letting the doctor know if I need my dose upped. I think it is a really low dose. I feel about the same...and it certainly didn't keep me from bursting into tears at my OB-GYN appointment this week.
We have gone through a ton of information over the last 45 days. We feel educated on what we are dealing with, educated on what our options are, educated on how to move forward. I am grateful for all of the friends and family that have been connecting us to the right people to talk to. It is amazing to discover all of the small, yet powerful, connections that our friends and family have -- and how quickly and easily they have offered up any information or connection that might help us get to the next person that can give us some answers. I am in awe of what they have helped us to achieve. We are truly blessed.
No comments:
Post a Comment