Well, it has happened again folks! I inspected my pillow about a week after I finished radiation, and determined that either a German Shepherd had been sharing my bed or my newly sprouted hair was again on its way out. It's back to bald and beautiful for me! Last night Annabelle had a sleepover at Gram's, and after her bath she came into my room where I opened my drawer and pulled out a brush to work on her tangles. After a minute of thought, she asked, "Gram, why do you even have brushes and combs?" I laughed and told her I hold on to them for her sleepovers.
I am slowly getting back to feeling like myself again after completing radiation. The skin on my head is red and irritated, much like a sunburn, and I've suffered some hearing loss which will likely repair itself in the coming weeks. But the most significant side effect is extreme fatigue which set in a few days after I began the treatment and has just started lessening this week, just in time to get up and throw on a wig to see Annabelle and Addison get baptized in church Sunday morning. Baptisms at our church are usually scheduled every few months so that groups can be baptized in a single service. We were very thankful that they were willing to work in an unscheduled baptism for my grandchildren at Shannon's request so that I could be there to see my them enter into the covenant family. When children are baptized at Coral Ridge, the entire congregation pledges to take part in nurturing them and training them up in faith. As I heard my church family take this oath, I was powerfully touched and reassured that the kids will be taken care of after I'm gone. It was a beautiful experience that reminded me of God's unfailing goodness and grace.
And then it was on to waffle mania! Erin hosted an elaborate celebratory brunch at our house complete with pumpkin waffles and apple maple syrup. She did a fantastic job, and we enjoyed having extended family and friends over to rejoice with us!
Steve accompanied Bob and me to meet with Dr. Segota last week since Mackenzie was visiting her boyfriend in North Carolina. But of course, she didn't leave without giving him explicit instructions on taking notes and asking questions according to her method. Because of his background with medicine in the Navy, Steve was great to have with us during yet another appointment filled with new information, because he could simplify the medical talk for me. Here's the latest news. Without a biopsy providing absolute proof of the cancer in my spine, they cannot treat the disease. Dr. Segota met with a team of doctors to discuss my case, and they decided the spinal area under suspicion is so precarious that attempting a biopsy might do more damage than good. Instead, they'd rather focus on treating the overall cancer as opposed to that specific region. My best option now is a clinical study which involves a daily oral treatment to impede the growth of the cancer. Roughly 10% of people in my situation have the specific mutating gene that is necessary for the study medication to work. So far Holy Cross Hospital has tested 8 candidates for the presence of this gene and none of them have had it. So they've sent off my tissue to be tested as well, and if it turns out that I qualify, I'll be quite the celebrity around the hospital! This clinical study has had great success in extending the life of its participants. We'll find out if I fit the bill in about a week, so please be praying that I do! If not, Dr. Segota said we will refocus on managing the systemic cancer, though we did not go into detail about what that would involve. With the amount of radiation I've received recently, she said it's best I take a few weeks off from any treatment anyhow.
After my last day of brain radiation, I brought the mask home that was used to bolt me to the metal bed for the procedure - just in time for Halloween! The grandkids have had a great time putting on the stiff mask and running around the house yelling, "Boo!" Terribly scary!
I have continued to be blessed by big-hearted people who take the time to remind me of their care. An elegant bouquet of lilies and irises was delivered to our door last week with a touching note from one of Mackenzie's best friends, Arianne. And my daughter-in-law Dawn brought me wonderful scrapbook pages she made with pictures of Steve's induction as a Naval Chief to add to my book because she knows how I love to show off his accomplishments. I also received an adorable card from a first grade class at Westminster Academy with a beautiful drawing on the front of what we are guessing is either a flower or a ladybug. Either way, it was cute and encouraging.
We have enjoyed the week we've had with Steve since his return from duty overseas. He came to collect Dawn, Emma, and their dog Barley who were staying with Dawn's parents in South Florida while he was gone. But unfortunately, their visit has to come to an end, and they are leaving before sunrise tomorrow to drive to their new home in Washington, DC where Steve has been restationed as Chief. I can really never find adequate words to say how proud I am of my son. I am saturated with joy every time I get to see him.
I'm getting ready to head over and say my goodbyes to Steve and co. I'll definitely be bringing my camera to take pictures of Ballerina Emma, and later Kitty Cat Annabelle and Minnie Mouse Addison at Shannon and John's house!
2 comments:
It's good to see that another blog posting is up! And I feel privileged to have made the cut (kinda) this time. My parents are always asking about how you are doing, and now I'll have some new information to share with them. I'll be praying that you qualify as a candidate for this trial drug.
Jayne, as when we were much younger, you continue to inspire with your strength, stamina and wit. Know that you are in my thoughts and prayers. Pat (Bullis) Colwell
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