Yesterday it took three adults (Mark, Dad, Mom), one dog (unhelpful), a wheeled office chair (helpful), and lots of pauses to get me out of the house and into Mom’s waiting car. During one pause we held hands in the kitchen and Dad prayed…strength for today and hope for tomorrow.
By the time my overburdened Sherpa (Mom) and I had made it to my regular treatment chair I had risen from my wheelchair twice…once to get weighed and once to transfer from my wheelchair to regular chair. I was getting my blood pressure checked so I asked for my pulse ox. It was at 79. I was immediately given more oxygen and my nurse came down for a consult.
Mark and I had a pretty scary time this weekend not knowing what to do when I couldn’t catch my breath, my heart was racing, and I was throwing up. We were rather at a loss. Getting me to the ER seemed like quite an endeavor and we weren’t even sure what they would do there. Eventually the panic passed and I was able to breathe in bed.
We told my nurse about all this and told her that my Doctor Uncle George suggested we look into palliative care. So shortly after our debriefing with my nurse, she got us a referral for a palliative consult.
This is where our prayers were answered. At the end of treatment I met Dr. Mulder who happened to be in the building and happened to have a cancellation. Dad was able to be there along with Mom and me. Dr. Mulder’s expertise is palliative care and he immediately switched my pain meds to help my breathing and my appetite. His manner was perfect. He was doctor and pastor in one. He also prescribed a steroid to help my breathing. I’m also on a bit more oxygen.
He thought I would see a difference within a week, perhaps days. This morning I came downstairs unassisted and took up residence in my favorite chair. Mom was a little floored. I have had very little gasping for breath and can walk where I need to, if slowly.
This gives me great hope that I will feel comfortable during the holidays while my new chemo gets going on those cancer cells. Thank you dearly for all of your prayers.
She has been in bed all morning
She just had a shake, so that’s good.
That was Becki, just checking to see how she’s doing today.
Chris called wondering if she needed dinner tonight.
She said she’s feeling nauseated now too.
Emily just kicked off her shoes and got right into bed with her…I’ve always said she has such nice friends.
Does she know that Sara left a message?
Heather was here dropping off foods she thought Tash would want to eat.
How did she seem when she got up?
She ate pretty well just now.
She still looks pale, but I think her energy was better today than yesterday.
Did she take her meds?
I am on temporary hiatus from being the narrator of my own life. Right now, I am the she.
Mark and I had a much-awaited meeting with Dr. Campbell this morning. My breathing has gotten worse over the last weeks and I’ve gotten increasingly wiped out and worried. I was certain that my breathing issues were either due to the many pain meds I’m on or to increased fluid in my right lung after the removal of one drain. We also hypothesized that I could be anemic (low hemoglobin) as I often am.
Dr. Campbell saw us shortly after 8 a.m. He was prepared to change my chemotherapy because of my slightly higher tumor markers, but was a bit surprised at how I looked–especially that I had used a wheelchair to get there so that I wouldn’t have to stop to catch my breath so often. My hemoglobin was fine. He immediately ordered a CAT scan with a wet read (immediate reading by a radiologist). He was checking for 4 things.
1. fluid around the heart
2. fluid in the pleural space around the lungs
3. a blood clot in the lung
When we saw him a few hours later, he let us know that none of these were evident. I have only a slight increase in pleural fluid on my left lung and a slight increase in tumor size. He said that if he had to pin it on something, he would choose the slight tumor growth. So, essentially, it is good that I don’t have any of the four candidates listed above, but it is still frustrating to find myself so short of breath. I am fine when I am sitting, but if I walk from one room to another or up a flight of stairs I need a fair bit of time to recover.
I will start a new chemotherapy that we hope brings the tumors and fluid back under control. Abraxane. My first dose will be on my regular chemo day next week. It should have similar side effects to other chemo I have had–possible hair loss, maybe neuropathy.
I will try to be patient in the meantime. Getting so wiped out and being so dependent on others is hard for me. Mark has been beyond perfect. My parents ever-helpful. My colleagues understanding. Friends and family so quick with meals and other wonderful help. And yet I struggle against the limitations.
The waiting of the advent church season and my own waiting match up once again this year. And yet, I don’t find I’m much better at it. It’s abundantly clear that I’m still desperately in need of all that grace lying in a manger.