This is going to be very long since I realize I haven’t touched my blog since Christmas day. I am so sorry to those of you who have reached out for updates. I have tried so many times to sit down and write but either get too emotional to finish or interrupted. I have no time for myself anymore and it takes more than the 5 minutes I have to put my thoughts down. My parents left in early January and while they were here, they took care of Dan while I took care of everything else (house, 2 kids, working, etc). Now I have no help so time alone is few and far between these days. Did I mention our house is also on the market so I have to constantly keep it clean enough to be shown? We have had a ton of showings but no bites yet. Oh and this decision to move was made before his diagnosis so we felt like why stop now. Yes we are crazy.
And to make things even more exciting, I potty trained Tyler my 2 year old right after the new year, I broke out in a full body rash that ended up being stress related (hmm ya think I am stressed!), Carson had pink eye last week, and has had some tooth issues going on the past few months where he is waking up at night crying in pain. A few dental appointments later, a mini root canal was done today to save the tooth since it’s a back molar that won’t fall out until he’s probably 10 and is needed for spacing so it had to be saved. Adding to my chaos, I should also mention that I recently discovered I have an incisional hernia. When I saw something bulging, I called my sister immediately (she’s a nurse) and asked her what is growing out of my belly. She assured me it had to be a hernia and recommended a surgeon. I saw him the following week and he confirmed that my appendectomy incision from last summer didn’t heal properly and it can only be corrected through surgery – yeah not an option for me right now so I have to live with it and see how long I can go without it getting worse.
So moving on….Dan did lose all his hair right after my last post and he finished up his radiation/chemo treatments on January 24th. We were both so happy to put an end to the daily drives to Hopkins – at least for now. We had lots of help with driving him for a few weeks while I was juggling work and home and we want to thank everyone who pitched in. (Jodi, Cara, Dawn, Jeff) I know Dan enjoyed the company and lunches too. Thank you everyone. I hope to be able to pay it forward some day too.
After discharge on the 24th, Dan had 4 weeks to rest before his follow up MRI and appointment with his medical oncology doctor. Although he didn’t get fatigued or feel any side effects during radiation, we were told he still may feel it and it could last up to a few months. They were right. About a week later he was exhausted. He did have to continue weekly bloodwork appointments which could be done locally and PT/OT as well but for the past 4 weeks in between appointments, he napped, watched TV…a lot of TV, spent time online (many of you see him all over Facebook I am sure, lol), and just hung around the house. His blood counts have been looking great each week which is good news and even during radiation they were shocked at how great the numbers were each week. He does have a pretty bad case of thrush and has been on a Nystatin rinse for a while now but finally got an oral prescription to hopefully take care of it or at least get it to calm down. Apparently thrush is pretty common when on steroids and going through cancer treatments. He has had some issues with chewing food which may be due to the thrush or radiation effects too. I am hoping that corrects itself too. He has been living on hearty soups lately that are easier on him since he can’t really eat thick meats or anything.
In terms of his motor skills, his PT thinks he has reached a plateau in terms of his leg strength. He is able to walk without his cane but still uses it for safety reasons since his legs have lost so much muscle that he does get tired easily. His arm/hand is another story. He is now working more with his OT to try to get that area stronger. He does have movement but it is very limited, meaning he cannot dress or undress himself, cut food, tie his shoes, and just do all the daily things we probably all take for granted. It honestly breaks my heart into pieces seeing him struggle and ask for help. He needs me to help him and I do everything I can to make it easier on him. I know he wishes he could live normally again and I just hope and pray his strength continues and he can learn to do some of these things on his own to feel more normal. I try to get him to at least try some things but he gets frustrated which makes him mad which turns to anger that this is happening to him.
On Thursday the 23rd, Dan had his MRI and follow up appointment. We were both very anxious to hear about his progress and next steps. We were warned that the MRI was just a new baseline and wouldn’t tell us much this soon. The area that was treated is very aggravated right now so looking at the MRI, they explained that it looks worse and as if the cancer has progressed. A few years ago, they would have done surgery again only to find a bunch of dead cells. Good news is that the mid-line of Dan’s brain is now centered again as opposed to slanting to the other side while being pushed by the tumors. We also saw some swelling in there which is why Dan is still on steroids. I was getting concerned since they wanted me to wean him off of them but every time I try, he complains of pressure. Also, Dan is supposed to get an MRI every 2 months going forward but Dr. Holdhoff is bringing him back in 1 month to see if we can see any more progress and if the swelling has decreased. I have to say it’s hard to hear and see an MRI that looks so awful even though we were pre-warned.
During that same appointment, we found out that Dan is going to start 6 months of chemotherapy this week. He will take double the dosage of what he had last time (Temodar) which will be taken at night before bed (orally thankfully) in addition to some anti-nausea meds since it’s strong enough to make him sick. He has to take it for 5 days in a row, than 3 weeks off. So it’s basically 1 week per month on chemo. We are now waiting to receive it in the mail and as soon as we get it, he will begin. Apparently they only do it via mail order. Who knew?!
So that is the short version (can you believe that one?) of where we are now. There is always so much more to share and explain. Thanks for keeping up with us and all the outreach. It means so much, more than we can ever put into words.
One last thing. There are no pictures in this post because I am too lazy to download all of them. I take pics non stop, ask my family. They are sick of me.