Treatment 13

Mike how did you get so high?

Yesterday was treatment number 13. It was an early appointment. We had to be at DF at 7:15am. There was a lot of traffic and we were late. When we got there we checked in and went straight to the labs. Mike had his port accessed and labs drawn. Then we went up to the 7th floor to meet with the doctor. We got called in pretty quickly which was unusual... too good to be true in fact. I saw his doctor walk past us and go into a different room so I assumed we were next. A 10 minute wait turned into 20 minutes which turned into 45 minutes to an hour wait. Nurses kept passing by and noticing that we were still waiting. Finally someone checked on our status and it turned out the doctors schedule got mixed up and he went into the wrong exam room. The room that he went into was a consultation that was an hour long appointment. We found ways to keep ourselves busy. I embarrassed Mike when I pulled out my knitting stuff :) somehow it is okay for me to knit in the chemo room but not the exam room?? haha We played around with the patient exam chair. I pressed all the buttons to see how high he could go in the air... then I left him there... oops! It reminded me of the time when we were in the ER and Mike had just gotten a heavy dose of the narcotic Dilaudid he was in la la land and I was getting pretty antsy so I started walking around the exam room looking through the cabinets and draws and he was super paranoid and convinced I was going to get in trouble. It was hysterical to see his reaction every time I opened a draw. 

Things have been going really well with Mike's treatment. The only thing he has been struggling with is the neuropathy in his hands. Usually it would go away in between treatments but this last treatment the tingling in his fingers has remained the full two weeks. His doctor has warned us that this could happen and that he would need to eventually pull back on one of the drugs so it would not cause damaging effects. As the doctor was looking at his lab results from a few hours prior he noticed that his platelets were low. Platelets help your blood to clot. A low platelet count can cause complications such as your body not being able to stop itself from bleeding. Which can result in internal bleeding. Certain chemotherapy drugs can damage your bone marrow (the spongy material found in your bones). Your bone marrow makes blood cells, which grow rapidly, making them very sensitive to the effects of chemotherapy. Chemotherapy kills many of the cells in your bone marrow, but the cells recover with time. Mike's platelet counts were at 93 and usually the doctor does not treat a patient with chemo if their platelets are under 100. Mike insisted that he did not want to skip treatment. His doctor agreed to continue treatment this week but would pull back on some of the drugs this week in hopes that his platelets would bounce back in two weeks. He did say again he was happy with how his treatment was going. He also said he was in the long haul for his treatment. He wants to treat aggressively but also does not want to wear down his body too soon and cause complications. So if that means pulling back sooner to let his body rest now rather than later it's for the best. We have been lucky Mike has been responding very well. It's has not been an easy road, and it doesn't get easier.

Mike was able to get a private room with a bed. His treatment was also shorter due to part of his treatment being pulled back. We made it home before rush hour and both crawled into bed by 3pm for a nap! We were both exhausted. Mike woke up later that night and had dinner. He also ate a lot today which is great! His weight has been back up which is good too.

Mike getting his snooze on! :)

Waiting is tough. There is a lot of waiting involved and there is nothing you can do about it. If the labs get backed up you wait... if the doctor runs behind schedule you wait... if the pharmacy takes their time to mix the chemotherapy drugs you wait... if someone forgets to submit something or does it wrong you wait... more. You can complain, get upset, you can even yell all you want but it's not going to push you ahead of all the other sick patients so you just... wait. I've learned to become very patient while we are at the hospital. After a while time just seems to pass and I don't even notice it. I become numb and lose track of all sense of time. I spend a lot of time trying to distract Mike from himself. I try to keep his anxiety from getting the best of him. It's not an easy task by no means. As I've told a few friends and family in the moment I am solid as a rock. I can handle the situation. I can handle the bad, devastating, sad, heart breaking news with a stone cold face. I can react, ask the hard questions, get from point A to B. For the lack of a better word I've become "good" at being numb in the moment. I've put my fight or flight skills to the test and I am defiantly there to fight! It takes me a while to finally be able to comprehend and process everything that is going on... when those times of processing come... well... those are my darkest moments. I am usually alone... for now that's the way I like it and how I want it. I am just not ready for people to see that pain I am experiencing. However for those who are worried about me I am seeing a therapist on my own. Mike and I talk to a social worker at DF who is great. I also have friends and family who I can turn to when I need to and most importantly I have Mike, the love of my life. A few weeks ago Mike and I started the process of taking care of affairs. We've had the tough conversation of what services would look like for Mike... Never in my worst nightmare would I have imagined we would go from planning a wedding to planning a funeral. Yes I just said that. It doesn't surprise Mike. We are very open with each other and NO topic is off limits between us. Part of this blog is to tell our story. To give people a glimpse into our journey. Let's face it a lot of people want to ask us these tough questions but we're just not always up for answering them or they are not appropriate for people to be asking us. The way we see it is this is a safe space for me to spill it all out for people to read and see what were going through... I share what we want people to know and I don't share what we don't want people to know. 

On the way to the funeral home Mike and I got side swiped by another car... have I ever mentioned we have terrible luck? Sitting down with the funeral home director wasn't as hard as I thought it was going to be. I had been dreading this day. Mike was going to go alone because he didn't think I could do it. Mike is not in this alone. There is no way he was going to go by himself just because he thought I could not handle it. What I am going through is hard, it's horrible it's awful but what Mike is experiencing is totally different and he is not alone no matter what!  After our meeting at the funeral home Mike and I talked about it. It kind of gave us both peace but at the same time we felt numb. The director laid out all the options for us and we were able to take all the information home and talk about it more. We think we have a pretty good understanding of what he wants. As I sit here and right this I am taken back by how really mind numbing this all is...

All I can say is keep your loved ones close. Don't sweat about the small stuff... you have no idea how frustrating it is to hear people complaining abut the most mindless things in life when they have their health... you never know what you have until it's compromised and taken from you...

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