Craig Hospitalized with Body Seizures

Friends: Craig was readmitted to University Hospital last evening after hours in the ER with them monitoring ongoing spasm/seizure activity from his right shoulder down to his right foot that began shortly after noon yesterday at work. Much of it was around his chest and right arm. He drove safely home and we went from there... An MRI was done last evening. It is showing "something" that was not on the last MRI in early January. It could be anything from tissue still responding to the radiation, to post-surgery changes, to a small amount of tumor re-growth. He will have an EEG this morning and be assessed by a seizure specialist. The neurological team will evaluate the MRI. They do not anticipate surgery at this point. Whatever is there is small. We hope to know more as this unfolds of course. We are concerned and hanging tough! Craig and I prayed before I left and he was listening to the musical long healing prayer on his MP3 player as the anti-seizure medicine dripped into his veins as I left the ER at 11 p.m. (there were no hospital beds, so he didn't get to a room until 3:15 a.m.). Craig's attitude, as always, is upbeat. As always, we appreciate your prayerful support. Love, Susanne p.s. More confirmations about our choice to take opportunities when we can...good thing we did Florida last week!

Week in Florida: February 15 to February 23

Very little news on the medical front. I finished the round of antibiotics that were prescribed after the surgery and have returned to the assortment of vitamins and supplements I was taking before the surgery. Susanne just kept an eye on the incision and didn’t fuss about anything I ordered to eat while we traveled in Florida!

Our vacation week was to an 8-person townhome in Kawama Yacht Club, Key Largo, Florida with both of our mothers! My mom came over from Pennsylvania and flew with us. Susanne’s mother flew from Toronto, Canada. Susanne’s daughter Jennifer and her husband Frank, who live in Ft. Lauderdale, Florida, joined us for the first couple of days, too.

It was a delightful, restful time. The mothers joked about Susanne being “Matilda the maid” and me being “Henry the chauffer” since those were our support roles with them down there. The major decisions each day centered on whether we’d go to the pool or the beach and where we’d go for lunch and dinner and which card game to play…pretty weighty decisions. We enjoyed breakfast each day on the balcony. The weather was a great escape from the northern snow. Most days we didn’t even need the air conditioning on. The Mom’s kept checking the weather channel and reporting how much snow was falling at home!

The main sightseeing trip we all did together, including Jen and Frank, was a glass bottom boat trip out to the John Pennekamp Coral Reef State Park. This was a wonderful cruise, first out through a long channel through a Mangrove swamp and then out to the reef. The view of the flora and fauna of the reef (including some Goliath Grouper and Barracuda) was spectacular. Unfortunately the water was fairly rough as we were idling over the reef and several of our party got sea sick…oh well! We made jokes about family bonding over nausea and upchucking….

We also visited a wild bird sanctuary in time for the daily 3:30 PM feeding. That was a bit overwhelming and a bit more of a walk than our mothers bargained for. But interesting to see all the birds.

Susanne and I did several things together. We:

• Walked down to the beach at sunrise each day and did our Tai Chi exercises at the end of a 400 ft jetty. That was wonderful! Walked in the evening and enjoyed the full moon. Unfortunately it was cloudy the night of the lunar eclipse, so we saw little of it.
• Took a sunset cruise on a catamaran…it was advertised as no seasickness, so Susanne got brave enough to go out on the water again. Special bonus was the appearance of a full rainbow (both ends visible…right and left) just as we were exiting the marina out into the ocean. The whole cruise was a wonderful romantic time.
• Visited the Museum of Deep Sea Diving, which was a really interesting look at how man has explored underwater for 1,000s of years. The centerpiece of the exhibits was a large array of various diving helmets from all over the world. As far as I’m concerned it took a huge amount of courage and trust in the surface crew, that were supplying the air, to be bolted into one of those things and go underwater.
• Swam in a lake on the condo property that was seawater and had many fish. Someone told us afterward there was barracuda in it. We had seen large parrot fish, but that was it. And there were platforms for sunbathing throughout. So, we figured it was safe. Glad we had no problems with anything but minnows!

  So, we’ve come back refreshed and browner than when we left. Great to have a week with no medical appointments or emergencies! Yay!

Second and third week after Third Surgery: February 3 to February 14

It was actually a fairly peaceful week and a half on the medical front and I was able to work 23 hours (most so far since the surgery last July) for my employer, the week of Feb 4 and about 20 hours the week of Feb 11. I also made significant progress in getting our personal tax information ready to turn over to the accountant. YEAH!

We got specific feedback from the Block Integrative Cancer Care Center about potential interactions of their recommended vitamins and supplements with the strong antibiotics I’m on until February 21. We adjusted the regimen accordingly. I was actually feeling more and more tired as the week began and as the vitamins and supplements resumed, I was feeling much better. I guess the handful of pills actually works (shoot!).

We also had a mini-milestone occur—my first doctor’s visit in six months by myself. I had an appointment with the radiation oncologist to review the recent MRI. Susanne had a lot on her plate that day and I indicated that I would be fine with driving myself to the appointment. It was a struggle for her to detach from being there, but she ultimately agreed. I still wore my “I Love My Wife” button. She normally wears her corresponding “I Love My Husband” button. We have gotten pretty well known around the hospital by wearing these. Many of the staff asked after her and sent their greetings. The radiation/oncologist showed me the recent MRI scan and compared it with the previous. He was very pleased to show me that there was no visible tumor matter in evidence. He did detect a slight degree of problem with maintaining balance when he asked me to walk toe-to-toe. He was not overly concerned and it has since improved.

Susanne continues to diligently nurse the incision, per the surgeon’s instructions, and we returned to the surgeon’s office on February 13th to have the incision checked and some of the stitches and all of the staples removed. The staples were particularly irksome as they were located at exactly the right location to be in the way if I happened to bump my head on the car door frame….OUCH!! I barely noticed the stitches and I took no pain killers since the morning of the third day after the surgery.

Dr. Sloan explained that the condition of my scalp was somewhat fragile due to the radiation treatments and multiple surgeries. He indicated that performing, what he called a wound revision was very unusual. In the 13 months he’s been at this hospital doing brain surgeries full time, he has done 3 wound revisions…2 of them mine!! Overall he was pleased with how the wound was healing. The one down-side for me is no snorkeling on our upcoming trip to Florida with our mothers from Feb 16 to 23. Unfortunately, the surgeon indicated that I should not do that!! No sun on and no pool water or sea water in the incisions. Oh well…I’m sure we’ll have a great time anyway. One nice side benefit from the appointment was that my son David had an appointment at the same time, so we got to spend time together and get new photos of him and his family.

We also went to the Gathering Place for two excellent programs:

• Dr Stephen Post spoke about his book “Why Good Things Happen to Good People”. He is a Professor of Bioethics & Family Medicine in the School of Medicine, Case Western Reserve University and is also President of the Institute for Research on Unlimited Love (IRUL) - Altruism, Compassion, Service. His talk was very poignant and the audience participation was marvelous. I was able to share about my spiritual journey with cancer, which the presenter really appreciated.
• Movie Night was Kevin Kostner’s "Field of Dreams" followed by a discussion on how the movie’s themes apply to our journeys with cancer and caregiving. I found that the movie contained a very powerful metaphor for me of my journey. What I shared was that just as the main character of the movie was following his spiritual inspiration, despite many nay-sayers, I was doing the same thing on my path.

  I was also able to share about my spiritual/medical journey at Toastmasters as I presented a prepared speech with the objective to persuade with power. I called the speech “Participant or Passenger”. It was really fun to do.

  Another event that took place this week was that Susanne did a presentation and book signing at Joseph Beth Booksellers. That was also fun.

Back in the Hospital: January 27 to Feb 2

On Sunday, the infected area at the end of the incision seemed to be responding well to the Silvadene and Goldenseal treatments, but I noticed a swelling and tender area about an inch away from that spot, which caused us concern. You’ll recall, from the Jan 20 to 26 post, that the surgeon had suggested surgery to clean out the infection, if the Silvadene was not successful. Our decision on Sunday was to accept the surgical option, and, due to the low level of my white blood cell and immune system indicators, felt that this should happen as quickly as possible.

We headed down to the ER, once again….Once we finally saw the neurosurgery resident, he consulted with the surgeon and they agreed that surgery was indicated. They were able to come up with a surgery time of noon the next day. Because it was already 5 PM, it was decided that admitting me would be best so all the pre-op tests, etc. could be carried out. The alternative was to go home and be back by 7 AM the next morning. In either case, I was not to eat or drink anything after midnight.

Early the next morning I was advised that I was no longer on the surgery schedule for Monday, but would be for Tuesday at 11:15 a.m.. I promptly ate some food, they completed all the pre-op testing, was discharged, and I went home for the day.

On Tuesday, I checked in through the front door of the hospital. All the previous surgeries, I had checked in through the ER and came to surgery from a hospital room. In the Pre-Op area, Susanne and I asked whether it made sense to do a needle biopsy of the swelling before going ahead with surgery. One of the doctors explained that because the scalp has many layers the presence of an infection could be missed by a needle biopsy and there was also risk of infecting a clean layer. We recognized this as another step on the Fact-Based Spirit-Guided Path and indicated that the surgery should proceed.

Please be advised that this photo and explanation of the surgical area on my head may not be for the faint of heart but are illustrative of what was actually done. If you’re squeamish, you may just want to skip to the next paragraph.

The conclusion of the surgical and infectious diseases folks was that I have a staph infection. It was clearly resistant to the Keflex regimen I was given earlier in January so they prescribed a three week regimen of Ciprofloxacin and Rifampicin to be taken in pill form…..not another round of IV infusions like in September, yay!!

Because of the nature of the prescribed antibiotics, we provided the folks at the Block Integrative Cancer Care Center with a detailed list of all my drugs, supplements, and vitamins and requested that they review them for any potential negative interaction issues. We expect a report from them by Monday or Tuesday. Until then, we’ve taken most of the supplements and vitamins out of my diet.

I am to return to the surgeon’s on February 13 to, hopefully, remove the sutures and move forward with the chemotherapy.

I had initially planned to go back to work on Friday but, was pretty tired so stayed home. I have taken no pain-killers (even Tylenol) since Friday morning….YEAH!!

Today, Saturday, I feel much more energetic so plan to do some work from home today and tomorrow, including moving forward with preparation for submitting taxes, and expect to be back at the office on Monday.

The journey continues even with occasional speed bumps!!! The new hypno-therapy session tape (1/22/08) has been most beneficial.