I didn't realize it had been so long since my last blog as days turn into weeks that then turn into months and then here we are it is almost November. It has been 2.5 months since my last blog which means 2.5 months since I started on oxygen. I joke, though it's not funny, that at home I am on a 20ft leash and in public a 3ft leash. Oxygen has become my best friend and the bane of my existence at the same time. When I am sitting and working or not doing much I can go an hour to an hour and half without it but if I am walking around I definitely need it and a lot of it.
I have a large concentrator that I use at home and we have developed a pattern at home that I get ready for bed when I am on the higher level - usually 5-6 and then once I am settled in bed Ramsey will turn it down to 2 and we go to bed, he then turns it back up in the morning before he goes to work. (we keep it in the kitchen because it so loud). For the first 2 months when I left the house I used the old school oxygen tanks. They work but are not the most convenient and you can't fly with them. We had a trip planned to Nashville the first weekend in November, so I was on a mission to get a POC - portable oxygen concentrator. These are battery operated, approved by the FAA and only about 6 pounds. When I tell you that I almost had to trade my first born for this thing I am not exaggerating. I had to go to a pulmonologist because and order from my oncologist just wasn't enough. Then there was back and forth about if I would benefit from one since I need a flow of 6 and the machine goes to 5. Once agreed that I could get one I was on the phone daily with the lady at the oxygen company pushing it through. At one point I said -- I am supposed to be on a plane next Friday and she said -- the insurance company doesn't care. The next day she told me what a delightful person I am, and she would be sure to get it to me in time. It was delivered to the house on October 27th and we were able to take our trip on Nov 1st.
So where are we medically -- in Mid-September we took a trip to Houston to get a consultation at MD Anderson. The takeaway from that trip is that we were doing all the right things but to not look at clinical trials as a hail Mary. I had always thought of clinical trials as the last resort but what they made us realize is that you need to be in decent health to be accepted into the trials so it good to start thinking about that now. The trip to MD was also eye opening in what a pain it is to be on oxygen. Making sure we had enough tanks for the drive down and back, and for the appointment itself. Lugging the large concentrator from the car to the hotel room and back to I could use it in the room and to sleep. Abbey was with me on this adventure and after we finally got everything into the hotel room and got settled, she went to get us some waters and a snack. The lady in the elevator told her she looked like she needed a drink, and nothing could have been more accurate.
I was still getting chemo and then we did scans on Sept 27th. The scans showed continued progression. Not significant growth in all the tumors but growth none the less. This was of course devastating; another treatment with little to no results. So now what.... the next standard of care treatment was an older school chemo that might work for 3-6 months and that was on the high side. We decided to start this but also start looking at clinical trials. Rather than go back to Houston we decided to go with a group called Next Oncology in Dallas that has access to all the same trials but is a lot closer to home. We decided to start the chemo really just as a bridge until we could get started on a trial because it could take a few weeks.
Fast forward to where we are now. I had 2 rounds of the chemo but will now be starting a clinical trial on November 14th. We are cautiously optimistic as they have seen some positive results with those already on the trial. This is a phase 1 clinical trial which means it is in its first phase of testing on humans. I am not patient #1 but still a little scary. Since it is a trial, and they are also trying to gather a lot of data, there is a bit more involved than just showing up for an infusion. This past week I had a new baseline CT and Bone scan (13 attempts at and IV between these 2 tests). I also had a baseline eye exam. This coming week I have lab work, and EKG and a liver biopsy. The liver biopsy is to have a sample of the cancer tissue before we start the trial. When I go on Thursday I will be there for 10 hours, this is for the infusion and then monitoring. They will do multiple blood draws throughout the day to measure how of the medicine is still in the bloodstream. I will go back briefly Friday and Monday for more bloodwork.
So those are the facts, but at this point the appointments and the blood draws are the easy part. I have definitely been having a harder time emotionally. I am more down than usual and having a hard time staying positive. Everything, and I mean everything is hard. I have developed anxiety about leaving the house, especially by myself. I am afraid I won't be able to breathe, or I will have a medical crisis in public. Even on the oxygen I am limited to about 10-15 minutes of activity before I need a break. I have lost all my strength and endurance. I have lost 35 pounds without trying and have appetite of a toddler. I am trying to drink protein drinks to help but easier said than done. It is so hard to warp my head around the difference a few months can make. In June I was playing tennis, in July I was waking 20K steps a day in Europe and now I have to take a break after I walk from my bed to the bathroom. The new phrases we use in the family are "Mom is a lot right now" or "Mom is a hot mess". I think Ramsey might be having t-shirts made.
Ramsey has been doing so much to help but I know he worries about me constantly. He has been cleaning, cooking, doing dishes, putting the laundry away. As he told me the other day - "I am doing more than I ever have in my life." I could not be doing any of this without him. I did have to gently fire him from grocery shopping because his impulse buys were going to bankrupt us. Thankfully grocery delivery is working out well. Helton is pitching in as well and was great at bringing the oxygen tanks in and out of the car. His specialty is unloading he dishwasher. He also checks on me every time I am napping to make sure I am breathing. Abbey isn't here every day, but always helps when she is. She calls everyday on her way home from work and if I don't answer she calls Helton to make sure it is because I am napping. I am sure she didn't have pushing her 49-year-old mom in a wheelchair though an airport on her bingo card this year, but she did it! The latest joke amongst the 4 of us is about my reliance on my pulse ox monitor that I put on my finger to check my oxygen levels. Abbey is calling it my binky and we have to make sure that I always know where it is. If you can't joke about these things then are you even family?
I have been doing a few things outside my comfort zone that I think have been good. I joined a support group just for people with Stage 4 cancer, it is a great group of people, and we have shared some tears but more laughter than tears. I hosted our quarterly town hall call at work which required me to be on camera in a head scarf with about 200 people in attendance. Not everyone at works knows what is going on but a lot more do now. I was also a panelist on a Breast Cancer panel at work where I shared my story with about 300 women in North America and it was a very rewarding experience.
I am ready to start this trial, ready to enjoy the holidays, and really, really ready for some good news. We will have to go a few cycles before we do scans to see how things look but hopefully the time will pass quickly and 2025 will bring us positive news.
Σχόλια