Good Days MORE than Bad

I usually forget to update when things are going good. Back on September 29, I was discharged from the hospital. I did not think I would be alive to see Christmas this year. I was really sick. Sicker than I thought I ever would be. Then the issue a second opinion Doctor brought to me about going on a chemotherapy I used previously with the current chemotherapy I was on from Sept to Oct...really reinforced that belief. All my doctors said I looked sick & I did. My skin was grey. My eyes were dull. My stomach was huge and filled with ascites, which is fluid excreted from the tumors in my abdominal lining. My legs and arms were sticks and I had the posture of a question mark. I only left home for doctors, I could not walk up stairs and I had to use a wheelchair in public, because walking more than 5minutes exhausted me.

I was sad that I was this sick. It was not how I pictured my first year married to Kyle. I was devastated that I would not see our 1st Anniversary and that my health declined THAT fast and I had no control over it. What did I have control over - taking my medication, continuing to pursue trials with my doctor to plan for a future, work on getting stronger with physical therapy, and praying to god nightly to help me heal. I did not expect to heal. I was watching my friends die who's health was better than mine, yet I was still here. I did not know what was going on, but one day one of my doctors said "You look great." I said "what?, just three weeks ago you told me I looked horrible." Apparently after 1 round of the new chemo combination, my skin was brighter and my stomach was shrinking. Like I said in my last post... a rainbow came out of the storm.

I am still seeing myself getting better. My doctors, nurses, therapists, and family members have all commented on how much  better I look and how much stronger I have gotten. I still question what the heck happened and is happening today. I also cannot guarantee that the changes that have happened cannot reverse themselves as quickly as a beat of a fruit fly's wings. That is how fast cancer changes. For today, I am thankful and blessed that I feel good and the physical evidence shows that I am doing well.

I continue to watch my stomach get smaller. I have most recently drained 700mL of fluid at my last paracenticisis which was biweekly (this is coming from 2.8L of fluid 2x a week back in the first week of November). My PleurX drained 40mL of fluid yesterday, this is down from draining well over 500mL of fluid 3x week. My traech is out and as of today the wound is healing and my breathing remains strong. My need for oxygen has gone from 5L of oxygen per hour to 1.5L of oxygen per hour. On January 4th, I see my pulmonary doctor to get tested on room air to see if I even need oxygen.

Honestly I am scared this will change. My oncologist and I said the short term goal is to get me off of oxygen so I can get to Dana Farber and Columbia to discuss clinical trials for the future. There is a future... a potential future of treatment. I still question "is this my last chemo, will I go on Hospice?"

I am STILL waiting on getting my insurance to approve my Stereotactic Radiation. My insurance denied it because I had radiation 5months ago and 1 new spot was found on my MRI, so they said "according to their standards I need whole brain radiation." My medical team feels I need targeted radiation as my spots are small and targetable, so we have actually gone to a second level of appeals. I will know on the 26th if it got approved. Otherwise, well....lets not think about what could happen. For now we wait and I will update my blog on that when I know more.

BUT the good news is I made it to Christmas. Next goal is make it to 2018. The most awesome thing is I can walk up stairs with 6lb weights on my legs, I can do squats, deadlifts and lunges with little baby weights, and today I did bicep curls with 8lb weights. It may not seem like much, but on Sept 29th I could not go to the bathroom alone and relied on a cane to walk in my own home. I had to lunge myself upstairs with assistance from two people. I needed a wheel chair. I walk everywhere I go now. I actually vacuumed my house, cleaned the bathroom, and have been doing the laundry daily. I could not do that even two weeks ago.

It blows me away how blessed I am. I continue to hope and have faith that this treatment will work to get me off of oxygen. I hope that if it stops working there will be another chemotherapy I will be strong enough for or a trial that will blow my cancer away. Regardless I will continue to work to remain strong by doing my physical therapy, getting out of the home, praying to God, eating to gain weight, and using my mind to remain hopeful and keep the faith in God's blessings he has given me to get healthy.

Merry Christmas everyone! I am so excited for this holiday. I may not be able to give much, but the decorations and seeing my family will be enough to enrich my soul. <3