Oh what fun it is to just “wait and see”. That’s the game plan as of right now. Just wait and see. Seriously not that fun. However I am on the least amount of meds than I have been in four years so that is a very positive thing. I am feeling better for the most part. The graph vs host in my mouth is minimal. My counts are getting back to normal. All good things so really I can’t complain all that much. So I guess we will just wait and see.
I am back in remission for now. No signs of disease in my bone marrow or my spinal fluid. Bad news is I am getting small signs of graph vs host in my mouth of all places. Yes, mouth sores type behavior in my mouth. Not fun at all. It’s been hard to eat, talk and move my mouth in general. The sores aren’t that bad, at least compared to when I had them in the hospital, and my docs did give me meds to help the swelling go down and hopefully relieve some of the pain. It isn’t at this point getting any worse so that’s a good sign. I didn’t start immunotherapy last week because of my mouth along with some low liver counts. They decided to take the week off, which I am not going to lie was nice.
Now if I could just sleep through the night that would be extremely helpful. I don’t think I have slept through the night in over a month. Sleep, where did you go? Come back to me. It’s mostly just stressed induced, but it’s starting to take it’s toll. I am just tired. Physically and emotionally just worn out. Plain old worn out. I feel a 100 years old.
This upcoming week we may start immunotherapy again for a 3 week cycle and go from there. I am completely in uncharted territory. There are no more guidelines or protocols to follow. I don’t honestly know what is going to happen from one week to the next. This is all I know. What could possibly happen and that’s it. It’s all am educated guess from here.
My stupid dumb fucking cancer has been so relentless and aggressive that every single time I think I may be in a safer zone, it comes and just gut punches. Monday I will go in for a bone marrow biopsy to see if the immunotherapy is working. After that there is a very “loose” game plan. Which doesn’t help me really explain anything. There are possible paths that they are considering for example:
Not really knowing how they are going to proceed is scary but this really has been the last year. Let’s just wait and see. But I am truly exhausted mentally, physically and just reaching these levels that I have never been before. The amount of “what if” scenarios are exhausting. I feel like I am just moving through these motions with no real. Why is my cancer so fucking aggressive. I mean seriously? I haven’t really slept in a month and it’s starting to wear on me. I try to stay/be positive all the time. I keep moving and doing the right things but at what point do you just go, “oh my god, enough already, I quit this job”. I think I just need sleep. I am in desperate need of sleep. I am in desperate need of a vacation from this dumb stupid body. Anyone want to trade?
One giant fuck. Yup. Found out last week that my leukemia is back. They initially found some in my peripheral blood and then called me in for a bone marrow biopsy, which confirmed the cancer is fucking back. So let’s get to it-What does this mean? Well we are in a whole lotta uncharted territory so I am not quite sure long term but for the near future, three weeks to be exact this is what will happen.
Three treatments once a week of inotuzomab immunotherapy. This is the same immunotherapy that allowed me into remission before my stem cell transplant. After three weeks the doctors will pull another bone marrow biopsy to see where we stand. They may do another smaller infusion of my brother’s stem cells if necessary just to give them a bit of a “boost”. Right now all my counts are great. My white blood cell count did shoot up pretty high after they took me off my autoimmune therapy. They are giving me plenty of IV fluids, which is actually what I am currently doing in my living room as I type this. Yup, you know you are way ahead of the game when you have your own IV pole, tubing and supplies to give yourself a bolus of fluids. Docs changed my meds and that is about it for now.
I do and don’t know what is next if this doesn’t work. Right now I am just living with these next weeks ahead of me. It was one big dick punch to the face when I found this out last week. Especially since I wasn’t feeling bad or sick. The docs say they believe they got lucky and caught it extremely early. I guess that’s a positive. I am angry, sad and a little fucked up right now. I don’t really know what do to. I think my one friend said it best “I am just living to die”. That’s kind of how it all feels because if this shit goes awry, which it could it’s really just an extension of life.
At least for the time being this period of treatment is extremely mild compared to what I have gone through with other chemo treatments so I can do most of the things that I want within reason. Stupid dumb dick cancer always holding me back. Fuck off already!
The docs gave me a little bit more freedom now. I can be around crowds or large groups of people as long as I have somewhere to go if I see someone looking “sick”. I can go to the gym on off hours as long as I wipe down the equipment. These small step are giant leaps for me. I don’t know why but just having the option to go do these things is relieving. I don’t have to be stuck in my house if I don’t want to be. I guess that is more the mindset than anything else. I still have to use common sense and be smart but I am heading in the right direction. I can’t be more excited for just this.
CAR T Cell Immunotherapy Drug Approved by FDA
The above article was on NPR.org today. At the time, before my stem cell transplant, this would have been a last hope of treatment. It was still an experimental, clinical trial. This is now going to be approved. I am so excited to see more technologies being used for something so great. This is exciting stuff that will help save a lot of lives.
For me if I relapse again it may save my life because my cancer is sadly resistant to chemotherapies. There is more hope for those still looking for a miracle.
“Hope is a dangerous thing. It can drive a man insane”-Red from Shawshank Redemption. “Hope is a good thing maybe the best of things, and no good thing ever dies” -Andy Dufresne
This past weekend was the first time I left the Chicagoland area for the first time in 10 months. 10 months. It feels like both a long and short time. Before the trip I had a ton of anxiety. It was really hard for me to wrap my brain around the fact that I would be away from MY team of doctors. I mean, “what if something happened?” I was paranoid. I couldn’t help it. I knew as soon as we were on the road, I would be fine. It was just the waiting part that was causing anxiety. So off we were to Traverse City in Michigan. As soon as we left the city I was totally fine. “Vacation mode” kicked in for me. It actually felt relieving to get out of this concrete jungle. I enjoyed being in fresh air that wasn’t disgusting city air. Side note I feel like the city for some reason this summer is extremely dirty. Just the air is gross, the streets are littered with garbage, it just doesn’t feel clean. Like a dirt film.
Back to my first trip out. It was great, although cold. I was able to sit poolside, sit on a deck on a lake, ride on a pontoon boat, eat some great food, hang out with fantastic people. I haven’t laughed this hard in a long time. I stayed up way past my bedtime. It felt just so good. I was surrounded by this amazing group of people that could not be any more genuine, loving and welcoming. It was just humbling to me that people like this are still out there. I really did have the best time. It was weird though as we were driving back from the city I felt like this weight on my shoulders again. Like here we go back to “getting healthy and not dying”. When I was gone I actually felt like I was living. Living life, doing what so many of us take for granted. I want that feeling again.
For the first time since I have lived in the city, which is going on 12 years now, I don’t want to be here. It’s even weird saying it. All I wanted to do when I was little was live in this city and now I want nothing to do with it. It’s a strange feeling when you are just no longer connected with the place that is your home. Maybe it’s just being old and having to deal with so much shit that I am just fucking over it. This city nickel and dimes everyone and I am just fucking done. It’s soul crushing. That might be true of every big city but this is the first time I have ever just been done. Completely over it. Maybe because my fucking weird neighbors have people living in a garage that definitely doesn’t have any running water or to building codes of any kind. I don’t know because I am tired of sitting on my back deck watching them go up and down to the actual apartment all fucking day long for the bathroom, food and water. It’s fucking gross. Sorry went on a tangent. It’s just so insane to me. Ugh gross.
Regardless, I just feel like this is the first time I could not live here and be okay with that. I’ve love my city, my home and everything that Chicago has to offer. Not saying I am leaving or moving at all just the possibility of me not here would be ok. I have no intentions of leaving or plan to anytime soon but just the idea sits well with me. I don’t know.
I am not going to lie I thought recovery would be quicker than the progress I’ve made thus far. I still have really hard days. Every once in a while I will have a day like I feel like I can conquer the world. It’s hard. One step forward and two steps back. I didn’t really know what to expect going into this. I didn’t have high expectations. Physically speaking I haven’t “bounced back” as fast as I as I anticipated. Mentally/emotionally it’s exhausting. I try to take it one day at a time. I try to have patience, which is extremely difficult for me. I will stay the course. A path to recovery.
That’s right. I found a dead Robin in our basement on the laundry room table and had a panic attack. I don’t really know why. Still trying to figure it out. I couldn’t even get rid of it myself. Anthony was traveling for work. My dad was in the middle of a cake delivery. It was just me and a dead bird. I called Anthony’s mom. She calmed me down and came over, she was already in the city and took care of the bird. I was taken down by a dead bird. I sat outside waiting for her. I couldn’t stay in the house. All I kept thinking was “why did he have to come into our house to die?”. It freaked me out. I couldn’t handle it. I’ve had panic attacks before but not over something like this. It was weird for me. Thank goodness for Mama Sue. Without her I don’t think I would have been able to handle myself.
I was fine all week with no anxiety then a dumb dead Robin took me down. This is will be a very interesting upcoming therapy session. haha. At least now looking back I can laugh a little about it.
I didn’t ask for cancer. I didn’t ask to have a stroke. I didn’t ask to have a seizure. I didn’t ask to relapse and go through an experimental non-FDA approved treatment. I didn’t ask for a stem cell transplant. But yet all of these things have happened. I now am a pre-existing condition. Penalized once again for something I did absolutely nothing to evoke. The government might have the authority to say that insurance companies can deny me coverage or have to pay an exorbitant amount for coverage. It is ridiculous. It’s the same as a child getting diabetes or having a heart defect at birth. They didn’t ask for those conditions. Yet, they are going to be possibly punished for the rest of their lives. It makes no sense. It’s hard enough already without draining savings accounts or going completely broke. I read hundreds of cancer patients talk about this. Yes, our health care system is broken. Not covering people doesn’t help the whole system in the long run. It only hurts more, especially those individuals that are in lower income categories. If you get sick are they implying to just go away and die? Is your life no longer as valuable as the perfectly “healthy”? What are we teaching our future generations? Health is a privilege and not a right? That is you were born unlucky your life means nothing? It’s absurd to think in those terms but so is denying someone healthcare because of something they didn’t ask for. Is our system so blind to the fact that diseases, especially cancer doesn’t care who you are, how much money/power you have or what race you are. That they too can have sick children or get sick themselves? Are they that ignorant? Naive? Rose colored glasses? Thinking they are invincible? Greedy? Heartless?
Is is selfish on my part? Now that I need insurance?