Tuesday, January 26, 2016

Day 1 of chemo(42)/radiation(30)

Dad and his new bird in his new chair
Overall, dad was in great spirits today. He said his days have been kind of slow to start, but attributed that more to the lack of motivation because he doesn't have anywhere to go at a certain time (other than radiation) more so than the tumor or newly added chemo/radiation.

Since I wrote last, many things have happened... Dad was fitted for his radiation stabilizing cast, he had his eyes checked, we had a snow day, Shela and Tommye Kay went back home, Reyna has been coming to "heal" dad's energy, some friends of dad and mom have continued to trickle by, and dad had Erling Jensen's with some of his old co-workers.

Dad has been having some difficulty seeing and processing things that he reads. It's likely that there is just still some swelling from the surgery compressing his optic nerve, but we took him to see Buddy anyway. Dr. Flinn and his family have been wonderful and loving friends of our family for a very very long time. Donna has a love for all things German, and Buddy is one of the most kind and gentle men I've ever met (as long as he isn't your basketball coach 😉). He was incredibly accommodating with dad and his quirks and schedule to help us try to determine if there was damage to the actual eye from the swelling after surgery, if the trouble dad is having is a product of the tumor/surgery, or if the meds dad has to take are contributing. Like all amazing doctors, Dr. Flinn knows his limitations and has a consult out with another doctor that may have some better insight to dad's issues. We love this family so much, and can't express enough how thankful we are that they are in our lives.

Diego has been out of town recently. In his place, his mother Reyna has been coming to provide healing touch to dad. I don't know what the technique is called, but it was explained to me that it's similar to, but much more advanced that reiki. She is helping to heal dad's energy in his body and aligning it with the positive energy around him (it's my poor understanding). All I know is that it calms dad, and he feels better after she does her thing. Dad and Zehong, a 9 year GBM survivor

Another set of old friends that have made it by a few times are the Hardins. Dr. Bill Hardin and dad have always gotten along beautifully, and his wife Yvonne and mom do as well. Their oldest daughter, Rachel, is very good friends if Katherine's.

Having the support of your friends during this time means so much. Even just a quick text to say they are thinking about you, or letting you cry to them, yell about how unfair this is, become angry at the circumstances... It means the world. For me, my most reliable and non judgmental sounding board, my rock and friend, happens to be my boss Amy. The support of her and the company for which I work, makes each day go by more smoothly for at least the part that I am at work and not able to be around dad.

Memphis had a snow day for a winter "blizzard." Schools and businesses shut down, the bread and milk aisles in the grocery stores were empty, and kids had their pajamas on inside out in anticipation. Well... We had about an inch of snow that stuck to grass and was melted by mid day in most yards. That's Memphis for ya! Annabelle thought it was great to crunch through the snow and it made for a pretty picture to look upon from the porch at my parents' house. ❄️

A friend from LA carved dad a calming bird. This bird has been in dad's pocket everyday. It's such a small thing, with so much love put in to it that makes a huge difference.

Sunday night, dad and some of his coworkers were able to go to dinner at Erling Jensen. When dad went in to the hospital to have his surgery, they were supposed to have dinner with some friends the night before his surgery. Dad bought a wine velour sport coat with black piping and was so excited to wear it. From the time he could talk in the hospital, until the day he got out, dad talked about going to Erling Jensen to eat. He was finally able to make it there and Erling was absolutely wonderful.

As we (dad) move through the 42/30 regimen, we need prayers for his continued health, strength, and general functioning. The radiation could start to cause problems with edema, and can make things a little more difficult for a while. Please pray for mom and Katherine, as they are with dad every day and are his caregivers at this time. Their strength will be needed. I'm continuing to scour the Internet for clinical trials, and am shifting in another direction, so prayers for guidance there.

Today was dad's first day of chemo and radiation. When attacking this particular type of cancer, the initial standard of care (SOC) is 42 straight days of oral chemotherapy, concurrent with 30 days of targeted radiation. The radiation is 30 days because it's only on weekdays (excluding Jewish, Christian, and government holidays) and dad gets a break on the weekends. The chemo is every single day.

Dad got to wear his "cast" for the radiation today. Mom is getting a picture of it tomorrow so I can show you. They make an impression of dad's face and upper chest so that his face can fit in to it and not move during the radiation. Radiation is a pretty tough thing and they want to reduce the likelihood of dad's good brain cells being targeted and killed with this stabilizing contraption.

Dinner at Erling Jensen
Dinner at Erling Jensen

We are so grateful, and feel so loved by the outpouring of support from all of you.

Karen also has some new posts http://www.karenpulferfocht.com/blog/drbobsbrain
Dad and the sisters at church
Dad and his sisters
The praying group
Praying group

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