The last few weeks has been an exercise in patience, to say the least. The doctors are not sure if the seizure activity was an after-effect of the radiation or indication of tumor re-growth. Because the surgery from January is still not finished healing, the chemotherapy cannot be restarted yet. The healing is slow because my scalp is fragile from the radiation treatments and there was abscess activity underneath the incision. And not being able to drive and arranging rides again.….grrrr!
We saw the surgeon March 19. There were still 4 stitches left in place. He removed 2 of them and is confident that he can remove the final stitches in 2 weeks (on April 2) and release my treatment to the oncologist. This would mean that the chemotherapy could resume on April 7. The surgeon also had a blood sample taken for analysis and ordered an MRI for March 31. He indicated that the oncologist would use the MRI in deciding the chemotherapy dosage. It is becoming clear to us that there is increasing concern that tumor re- growth may be occurring, which would not be good news. As we understand it at this phase of the treatment, MRIs are done normally every 3 months. The MRI the week of March 31 will be the third in a 6-week period. The bloodwork shows that finally my white and red blood cell counts are rebounding. My platelet count is dropping, though, so the doctors will carefully watch that.!
With the increased level of steroids and anti-seizure medication, I’ve been feeling wired (up a fair amount in the middle of the night and somewhat hyper), tired (I’m taking more naps), and foggy (I have some difficulty thinking clearly and staying focused on what I’m doing). I discussed this with the surgeon and he prescribed a ramp-down dose of the steroids to get me back off them. The dosage on the anti-seizure drug cannot be changed, and I understand it has fewer side effects than other drug choices.!
On March 11 I visited a new surgeon, who unfortunately confirmed that I’ve got an inguinal hernia that will need surgery. It’s not an emergency at the moment, so it will be delayed so that chemotherapy can re-start. It’s uncomfortable and I have to be careful about lifting and moving. God is certainly testing me with loss of independence!!
On the family side of things, we held a joyous first birthday party for my grandson Aidan, who is a bouncy, happy, healthy 24-pounder. My 3-1/2 year old granddaughter Karida came to town from Dayton with her parents (Michelle & Hooman) for the weekend, and my other daughter (Leah) drove in from Washington, DC and stayed until Wednesday. It was a wonderful time. Leah set up her massage table and worked on many family members, including Susanne and me.!
On the friend side of things, I was able to attend the second session of the Reflections on the Life of the Spirit course at our home, yay! The focus this week was on honesty and truthfulness. That evening (the night before the birthday party) we hosted 25 friends for a dinner (with help!). They were mostly people who have been sharing the Bahá’í Faith with interested people in Greater Cleveland along with our arriving family members. We also attended the monthly Spirituality Group at The Gathering Place, which was a wonderful sharing and meditative session.
2 comments:
Craig,
I was really pleased to see your red and white blood cells normalizing. Lowering the steroid dose will most likely help with the wired feeling and I know that will be great relief. Some really good advice I received during my roughest periods consisted of two things: don't resist the naps as it is a message from your body, and when feeling foggy, do mindless things (for me it is drawing and coloring and jigsaw puzzles). You are constantly in my prayers.
The rest of the story…
It’s been a bit challenging the last weeks to avoid the anxiety trap. It would be lovely to know that Craig’s brain is whole, healed, and healthy. And…there are just uncertainties to handle with faith that we are on the path we are supposed to be traveling. It’s also challenging picking up doing the driving and errands again and doing more lifting since Craig cannot. Leah helped with the errands one day while she was here though, and that was great.
One aspect of the Spirituality Group was expressing thankfulness for something. It was good, because I was able ahead of time to say I was thankful we could have a houseful of guests and family for the weekend and that Craig would be present for it. The weekend was very full and busy, but I’m glad to say I got through it without a stress attack and relied well on the help of others. Between friends helping fix food and host on Saturday evening and Craig’s daughters helping on Saturday and Sunday, everything went amazingly smoothly. And then Craig and I crashed into bed!
I’m continuing experimenting with writing new material for business audiences…but noticing a level of anxiety and stress with doing that rather than material for relationships. I tried calling a number of companies to discuss the new material, but didn’t get very far and struggled some with confidence. I had a meeting with my coach, and that helped me set a more confident direction. I’m feeling some internal pressure to be figuring out some way to increase income, both to manage debts but also so that if there are disruptions in Craig’s employment/income I’m doing my fair share. Perseverance!
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