Further Waiting: March 10 to 19

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.

In and Out Out of the Hospital...again: February 28 to March 9

I returned home on Monday March 3...YEAH!

I was connected to an EEG for 2 days, that also captured video footage of me. That was a lot of fun…not! I was trapped in the bed most of the time as a result. A new much higher dosage of anti-seizure medication (Keppra), that I’ve been on a low dosage of since the second surgery in August, was found to apparently eliminate all the seizure activity. It has also apparently significantly reduced the long-term numbness I've had in the right leg and foot. They finally removed the leads on Sunday but wanted me to stay an additional day for further observation, medication adjustments, and an additional MRI.

The seizure-specialist neurologist was initially puzzled at my seizures, because I showed some ability to control them with visualization and touch, something that is very unusual for seizures. The EEG definitely showed seizure activity, however. The conclusion was that the activity was very focused in the area where the tumor was removed and largely occurring in sensory areas rather than motor areas. He termed them “sensory seizures”. He has decided that I should not drive for the next two-three months and then be re-evaluated. He wants to be sure that I am stabilized and not in danger of losing control of leg and arm movements, something that could be hazardous behind the wheel. So, while not unexpected, it's a disappointment (actually I’m pretty annoyed and frustrated!). I’ve really enjoyed driving again the last six weeks. It’s very hard to repeatedly lose my independence.

It is not clear whether the root cause of the seizure activity is swelling from the radiation, cell/nerve damage resulting from the radiation, or tumor re-growth. Without surgery, it’s not possible to be absolutely certain. Just part of the nature of this condition. The doctors have prescribed a low dose of steroids to bring the swelling down. Another MRI will be done in a few weeks to monitor the situation.

I began noticing a few days after discharge that the leg numbness was coming back. We recalled that the same pattern had occurred with the January hospitalization and discharge. Susanne observed that a common thread between the two occurrences was that, while I was in the hospital, I was not taking the vitamins and supplements, just the prescription drugs. We first thought that I should go off all the vitamins and supplements, see if the numbness went away, and then step-by-step reintroduce them. Then Susanne had a better thought. About a year and half ago she experienced Vitamin B6 overdose which had symptoms of numbness. I’ve been taking a fairly high dose of Vitamin B6 since December at the doctors’ recommendation to attempt to reduce the neuropathy/numbness symptoms. We decided to see what happened if I just stopped the B6…amazingly the numbness was substantially reduced within less than a day. That vitamin is now off my chart. This stuff can just get so complicated when one same substance can both reduce and cause numbness!!!

I reached a major milestone at Toastmasters this week. The first sequence is completing 10 prepared speeches with specific objectives for each. I presented my 10th speech entitled It’s Your Choice. The objective was to inspire. It was clear from the audience reaction that I had done so. It was great fun.

While I was hooked up the EEG equipment, on Saturday, Susanne started a wonderful weekly study group on a book called “Reflections on the Life of the Spirit”. I felt like I was there in spirit, maybe in an enhanced way from the EEG leads all over my head…who knows. I plan to be at future ones in person!