I have not updated my blog in a month. Personally, I was trying to spend less time on my computer and phone & focusing more on my time with Kyle and my family. After the death of two of my best friends this past year being on social media has been very difficult. I keep wishing I could text Aziza or Hayley, but I can't because stupid breast cancer stole them from the world. Only amazing memories of these two gorgeous ladies live on & I have to admit being off of Facebook isolates me from friends, my online support group and seeing if anyone I know who also has Metastatic Breast Cancer has died. With each person that dies in the group I wonder when will be my time. This type of thinking has been unfortunate for my mental health, so to be happy I withdrew. In the 30days I vanished things have changed and things have gotten marginally better.
Scan Update:
I had my 3mo CT scan on 1/29/18. It showed regression everywhere, but my liver which showed progression. My liver enzymes were on the upward swing & my doctor and I both are concerned if there is any change in my liver mets. My two oncologists spent a week debating on increasing my doses of Ixempra and Xeloda, keeping me on the same regimen for two rounds and rescanning OR changing my IV Chemo, because the huge impact on my recovery happened when we added the oral Xeloda to the IV Ixempra. In the end my doctors decided that Ixempra did it's work, it got me off a respirator and out of a hospital to my home, but it was time to change my IV Chemo to focus on more regression and work on my liver and brain. They also looked into immunotherapy trials which my doctors feel are the next step if we can keep my brain stable and regressing with chemo.
Brain Update:
I am not having radiation done to my brain at this time. I actually think this is a smart idea to keep my body away from more radiation toxicity and allow Xeloda to continue to work on my brain. Xeloda actually crosses the blood brain barrier, while most chemos are too large of a molecule to go into the brain's blood vessels. The blood brain barrier protects our brains from toxins and well CHEMO IS A TOXIC CHEMICAL. I am switching my radiation team to Sloan also. My doctor can coordinate with the team at MSK easier and they also communicate better with me.
Lung & Fluid Update:
My PleurX catheter was removed on 2/9. My lung stopped draining fluid, which is a sign of regression, so we removed the PleurX. It is nice to have the drain and Trach out. I am unfortunately still on 1L of Oxygen. I will be getting a portable Oxygen Concentrator tomorrow which is the size of a small cross-body purse. This will allow leaving the home to be easier. Right now, I have to haul small oxygen tanks in our car & we have to time out the oxygen containers with any trip we take. The portable concentrator is battery charged and does not need to be refueled with an oxygen tank, it feeds the oxygen to me based on the breaths I take through my nose. The fluid in my abdomen has been checked another two times. I no longer have ascites, but my belly is still distended from the shrinking (YAY) 9cm tumor that chose to reside in my abdomen wall last May. I just want my belly flat to wear a dress by June. Right now I hide it with leggings and big sweaters, its literally not big at all, but I am all but 120lbs and 5'6" so a belly on me is like pregnant lady walking. I hope that changes as I start the new IV Chemo and I continue to gain weight. I have put on about 20lbs since October. My goal is another 5 by March and another 5 by April, so I am back to weighing 130lbs. The wedding and progression of my cancer last year made me super skinny, too skinny IMO. I am working on that with food and continued practice of my physical therapy & re-introduction to exercise.
Chemo Changes: (the only crappy thing beyond still having the bed sore wound...)
We are keeping me on oral Xeloda 2,000mg a day for 14days and 7days off. I keep taking this drug orally until we see lung or abdomen progression. Seems like the Xeloda is really tackling those two shitty tumor parties. We added Abraxane weekly to start to tackle the slight progression and to continue on my (hoping and praying) journey to getting off of oxygen. They started that Monday and I already had a puke fest when I got home. Seems like the drugs that don't need pre-meds I need pre-meds, so next week they probably have to give me an anti-nausea drug before or after my chemo. They are also going to add Avastin every 2 weeks, starting either in two weeks or on my second round of Abraxane. The delay in Avastin is due to my insurance, which I honestly am not upset over, I would rather know what side effects are Abraxane & Xeloda V. the Avastin with Abraxane & Xeloda. This means more days at chemo, but the whole chemo day was 2hours including labs, meeting with my oncologist, and getting the drugs. My lab-work also looked better yesterday, so despite having liver progression, my enzymes dropped or remained stable, my carbon dioxide in my blood is normal and my protein in my blood is finally normal. It is not so secret that I am grateful for Xeloda and the doctors who created it. It has been the only chemo to cause regression and 1 of the 4 treatments that caused regression or stability out of my 11 types of chemo and anti-hormonal combos. Xeloda has saved my life twice. Once in 2015-2016 and again in 2017-2018. I do not know how long it will keep working, but I am glad God put people on this earth to make the drug and having it work for me when I needed it the most. (if you are interested in learning about my chemo, I added hyperlinks above to direct people to the drug information)
More Good Things:
1. Physical Therapy is OVER~ I graduated physical therapy on the 29th. It was a bittersweet ending, but my PT instructor had me doing modified burpees, pushups, weighted stair climbing, running in place with weights on my legs, lunges, squats, deadlifts and tricep dips. In his words - "it is time for you to rip out those 30min Tony Horton DVDs and challenge yourself once or twice a week and do my workout twice a week until Tony Horton becomes easy again. So...like a perfectionist always will do, we follow directions. I did my first Tony Horton p90x in 30minutes on Sunday. IT WAS THE HARDEST THING I HAVE DONE FOR EXERCISE SINCE I STARTED THE PT IN OCTOBER. I had to pause the DVD, skip two moves, workout slower, and I was left sore as all hell. I was upset that I couldn't keep up with even the modified chick, but I need to start somewhere and Beachbody workouts are no joke and I finished the workout and plan to try another tomorrow. When I can't do one of Tony's moves, I have been inserting one of the moves my PT instructor taught me. He was the best teacher and the VNA of Central Jersey is lucky to have Chris. He motivated me when I thought I could never walk without a cane, walk upstairs again, or get off the floor. He had me hitting all my goals and left me with one on the 29th - GET BACK TO DOING WHAT YOU LOVE SO DO YOUR DVDS AND START HIKING IN THE SPRING EVEN IF YOU CAN'T GO FAR. Ideally, I would love to be back Rock Climbing and Biking too, but I am fine with an easy hike in Holmdel Park or Hartshorne woods before I start tackling PA trails or the trails we CLIMBED (not hiked well we hiked too but I had to climb UP a mountain) in 2016 when we went to Maine.
2. We got a new lease. We spent months debating on a new Subaru Legacy or Forester. We ended up getting a Black on Black 2018 Forester in MY NAME, so I plan to be here a while as that lease is 3years. (you hear that fate I cannot die in the next three years because we have an awesome car I am legally tied to LOL)
3. Transitions Hair Solutions rocks because I have long hair on my head again. Danielle, my awesome hairdresser who also drove into NYC to remove my wig last September, put back on my beautiful Cesare Reggazi hair. I feel pretty with my long hair. I just keep hoping I keep my brows and lashes on Abraxane. If not, Ulta did show me briefly yesterday how to draw on my eyebrows using a pomade. I am sure if I go back they can show me how to draw on eyebrows naturally and also how to line my eyes to make it look like my normal black-brown lashes.
That is about it. Kyle is still sporadically working from home and is my F/T caregiver. We are still living paycheck to paycheck, but I am not sure if that is any different than anyone else in our situation. We are still running my GoFund Me page. My finances are running low after paying down some doctor debt and we need to eat. Even if you want to feed us, message me...I do cook again, but most of our money goes to my medical care and food. Our other bills were being paid by the gracious donations in our Go Fund Me.
