Last year for my birthday, my family came and picked me up at the hospital. We had a nice breakfast and then several of us went and got a pedicure. It was a great break from the crazy month and I remember commenting that it would be fun to do it every year in May. It was such a nice surprise when I got a text from my aunt Gail asking if I would be interested in getting together again for another group pedicure. She took care of making all of the arrangements and this Monday I was able to celebrate the start of my birthday week in the company of my sisters and aunts. It was so nice to be pampered and escape for the evening, my Aunt Shari even was able to surprise all of us by being up visiting from California. Pictured: Gail, Roxann, Shari, me, Crystal and Jennifer. Wednesday was the 4th infusion (and last) of his first cycle of DRd and for the first time it was out at the Huntsman in South Jordan. While the nurses and infusion center at the main Huntsman are familiar, being closer to home is a different kind of comforting. Next week we'll be back up at the main Huntsman and meeting with Dr Sborov as he begins the 2nd cycle of DRd. So today we went back for more testing so that we can know how he's responding. I've heard in a support group that often the numbers don't respond until after the second cycle, but we'll cross our fingers.
As we pulled into the hospital for the third time this week, the life flight helicopter was sitting on the pad, something we haven't seen before at our local UofU/Huntsman. It was a bit sobering and ended up being the theme for the day. After dropping of and getting labs done at the infusion center we headed to radiology. Dr Sborov wanted a skeletal survey. It's basically a whole bunch of xrays from his head to his knee's to see if they can see any lyric lesions. The waiting room was surprising empty, but before they could get Chris in they told us they just had an emergency patient that needed to be taken care of first. We gladly waited. The tech who helped us was amazing. She was patient and very understanding and did everything she could to make the process easier for Chris. The last time we did a skeletal survey was back in October in the early days of his diagnosis. It took all the energy he at the time and wore him out but he pushed hard to make it through. Today it did wonders for my heart to see how much stronger he is since then. It still was no walk in the park, but he's stronger today and it gives me hope he will continue to improve.
As we were going from radiology to the next appointment we stopped for a moment in the lobby and I happened to see a couple, about our age, sitting across from us. From what I could observe, the husband was breaking some tough news to his wife. She was struggling not to cry and I could feel the pain she was going through because I've been there so many times myself. I wanted so badly to go up and give her a hug and a word of encouragement but I had no idea what to say. They left and walked up the stairs and we went to his next test. I saw them again as we went to leave, tucked over in a corner talking, the emotion still etched on her face and the struggle not to cry a real battle. Going to the hospital so frequently, has become such a regular part of our life that it's easy to lose sight of how life changing hospitals can be.
Battling cancer is a something that is multi-factorial, with just one of the stressful things being financial. In general we've been pretty fortunate to have good insurance, and are surviving that aspect of the battle about as to be expected. However with insurance there's still often a lot of hoops to jump through. This week we ended up with about $5500 in bills for various procedures and medical equipment. They are things that should have been covered but were processed incorrectly. It's something that happens frequently and is very frustrating. We contacted IHC, Huntsman and our insurance to try and get them worked out correctly. It's something that happened frequently with his brain tumor and from that I learned all of the insurance lingo and to know how things worked. Many I'm sure get bills in the mail and pay them without question, but to me I'm not willing to just take it in the pocketbook without a fight. One of the bills that was sent incorrectly gave us a sneak peak of the cost for his Daratumamab. We knew it was expensive, but the $50,000+ price tag... per infusion... was more than I expected. That's also just one med. The Revlimid has a price of $14,000 per month, our portion is large but reasonable. Luckily the last drug, the little "d" in DRd is comes with smaller price tag, which we split about equally with insurance.
chemo). Feeling crummy is pretty much just part of life with cancer, but we're hoping this week he'll feel just a little bit less crappy. With my birthday this weekend we've taken each evening to go out and get something yummy to eat. Getting out isn't easy, but Chris wants for me to be happy and we both want to have some happy memories mixed in with all the challenging ones. Tonight he wasn't feeling well and was worried about being away from home, but we were able to make the trip to Bountiful where we were able to have dessert with my parents at a place called Pace's. It's a favorite place from my childhood where you can get an ice cream treat called a rainbow, a fruity slush with soft serve ice cream. Just like the weather, life is unpredictable and you never know when you'll see a rainbow. So if you live in Utah, and are going through a stormy part of life and need a rainbow... now you know where to go to find one.
No comments:
Post a Comment