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.

Home From the Hospital

Surgery went well on Tuesday. I'm back home now with some additional incision area to heal. Otherwise I'm doing well. Thanks for all the prayers. Craig

Craig in Hospital/Surgery Again

Friends: Craig was just admitted this evening to University Hospital due to the head infection. They plan to do surgery on Monday, January 28 to clean it out. His white blood cell counts are low, so his immune system is somewhat depressed. Your prayers for him/us are gratefully received. Love, Susanne

Week 4 of Second Phase of Treatment: January 20 to 26

When we saw the surgeon again on Wednesday, he was dismayed that the infection on my scalp was still active after the antibiotics and instructed that the planned chemotherapy treatment for the week of January 28 should not happen. My low white blood counts are clearly making it difficult to fight the infection, and chemo would lower the counts further. However, Dr. Sloan indicated that delaying the chemotherapy for a short time is not a major concern as my MRI scans have continued to show no visible tumor growth. He offered me surgery as an option again, which I declined. He then prescribed silvadene cream to be applied twice daily with the wound to be left open to the air as much as possible. The situation will be reevaluated next week.

If the doctors had recognized the infection in December, when we first brought the head swelling to their attention, the first round of chemotherapy would, most likely, have also been delayed so that my body’s immune system could deal with the infection first. You may recall that my white blood cells (immune system indicator) dropped dramatically after the end of the radiation/chemotherapy treatments in Oct./Nov. and have stayed low since. My T-cell count (lymphocytes), another part of the immune system, has also been low since then as well. The neutrophil and platelet levels have somewhat recovered, but the red blood cell related counts are still lower than normal too, to which I attribute my continued fatigue (I need a nap every afternoon). I’m also starting to realize that some of the medications I’m on may be contributing to the fatigue as well.

I’m noticing that I felt much more engaged in the treatment when it was daily. The long periods between chemo sessions make it harder to feel engaged. I’m aware that losing concentration on healing though is unwise…there are still months ahead of concentrated cancer-fighting to go.

Other notable events of the week:

• We went to Pennsylvania to have treatments from my sister (ortho-bionomy) and her colleague Jeanie Anderson. We really felt well taken care of as we headed home. It was great to be able to do most of the driving!!
• I participated in another hypnotherapy session, that I tape-recorded, to reinforce my new plan for this phase of the treatment.
• Our monthly Spiritual Oasis devotional meeting was on the theme of the oneness of mankind and love. At Toastmasters the next evening, I then led the group in extemporaneous brief talks about race unity and Martin Luther King.
• We launched efforts to write a book that would share anecdotes and short stories from both us and many others about how cancer has affected people’s marriages and how their marriage has supported the cancer experience or grown through it. We are welcoming submissions. (The details are at the link above.)
• We registered for the spring retreat at the ECaP Health and Wellness Center. I am really looking forward to connecting with this organization. Its work has supported my commitment to being an exceptional cancer patient and approaching cancer in a very empowered way.

Week 3 of Second Phase of Treatment: January 13 to 19

Much of the week was involved with the infection near the incision. I completed a 10-day course of oral antibiotics (Keflex) on Tuesday and saw the neurosurgeon again on Wednesday. This time he was able to observe significant discharge, as the Keflex treatment was not successful. He instructed us to flush the wound twice a day with hydrogen peroxide, apply a topical antibiotic, and leave it open to the air when I’m not wearing a hat. We found that the Bacitracin ointment he suggested seemed to make the wound worse, so we have been applying a natural antibiotic (Colloidal Silver) instead, which seems to work a little better. We will see him again next Wednesday. He has mentioned postponing chemotherapy and possibly doing surgery to remove the infection (obviously this is a very undesirable option to me!) I still have a fair amount of fatigue, so I nap for a couple of hours every afternoon. As Susanne is trying to get lots of healthy foods into me, I’m finding some combinations just don’t taste good anymore. I’m not really able to articulate exactly what foods those are until I taste them, so deciding what to cook has been kind of frustrating for her. Other notable events of the week:

• Being able to now drive myself to work and elsewhere has been wonderful!!
• My daughter, Michelle, drove up from the Dayton area (about 3-hours away) to bring a friend to Cleveland for medical treatment. We had lunch with them and my son, David, and his family. It was a quick visit but fun.
• We attended the monthly Spirituality Group at the Gathering Place. We find these sessions to be very nourishing/nurturing. The leader of the group offered us copies of this prayer attributed to Julian of Norwich: All shall be well and All shall be well and All manner of things shall be well.
• I had lunch with David again. We are trying to schedule getting together as often as we can, which is wonderful. He pronounced my pick of Beach Club Bistro as a “quality” place. He’s worked at a number of high-end restaurants, so he’s got discriminating taste!
• I made major progress on getting ready to file our income tax return by getting all of the business income/expenses analyzed and summarized so that they can be entered into the Tax Organizer document our accountant supplies us with. This is generally the most complex portion of the preparation work. If I can get the personal portion done next weekend, then I’ll be ready to finish up getting ready for the accountant.

Week 2 of Second Phase of Treatment: January 6 to 12

It was another week of Ups and Downs.

Ups:

 The MRI scan showed no visible tumor re-growth and no infection involvement below the surface. (YEAH!) This MRI had been moved up from February 4 due to the presence of infection around the incision that I noted in the previous post.:

 I passed my driving fitness test at the Euclid Rehabilitation Center, so I am now permitted to drive for the first time since July. (Double YEAH!) The restriction was due to the leg spasming I was experiencing just prior to the tumor being diagnosed and the ongoing muscle/nerve recovery and numbness in the right leg. The surgeon interpreted the spasms as seizure activity which, under Ohio State Law, means an automatic 6 month without driving. It feels great to be behind the wheel again. This will take one burden off Susanne, who prefers to drive a lot less than she has been. My first trip was to the Toastmasters meeting on Thursday, as Susanne wasn’t feeling well enough to go. I had loaned my truck to a friend the last few months. Now it’s back home!!:

Downs:

 At 2:15 AM Sunday, January 6 our good friend Stephanie Dornbrook peacefully passed from this world (she had pancreatic cancer), surrounded by her loving family. The standing room only crowd at the funeral home on Monday was a clear testimony to the many hearts she touched, including mine. As I shared at the funeral service, my life has been intersecting with Stephanie’s since we first met in 1971. She and Dustin were newlyweds and I was living at home with my parents after my freshman year at college. We met at a Bahá’í conference and the three of us immediately became friends. Our lives continued to intertwine over the years, as our children grew up together. She also officiated Susanne’s and my wedding. I will miss her. We took her husband, Dustin, to dinner on Tuesday night before support group meetings at The Gathering Place.:

 We saw the surgeon on Wednesday regarding the infection on my head. Unfortunately, it didn’t look as bad when we were at the doctor’s as first thing in the morning. It looked worse Thursday and Friday mornings though, so we went back and saw the nurse on Friday…and yet another blood test. It is annoying to have infection come up from the surgery almost 5 months ago, although we keep hearing from people that it can take a long time for dissolvable sutures to actually dissolve and suture problems aren’t unusual. Fighting off the infection even with taking an antibiotic is a bit harder post-chemo though, since my white blood cell count is a bit low. I’m taking more anti-oxidants and eating more oranges to help.:

We’ve been spending more time since returning from Florida just doing quiet, home activities, trying to conserve our energy and heal. One of my Christmas presents was a set of DVD’s of the enhanced three original Star Wars movies. So, we’ve watched those and other movies, played Scrabble, and read books. I’m working this weekend on doing the end-of-year Marriage Transformation finances, and we’ve both been cleaning out files and organizing our offices. Lots of naps too of course! The post-chemo fatigue (and constant doctor’s visits) is challenging, especially since I’m not able to work as much as I’d like.:

Susanne has been open to making some adjustments in my diet to increase my food intake with my decreased appetite. Homemade milkshakes and cottage cheese have tasted so good!

Week 1 of Second Phase of Treatment: December 30 to January 5

The 5 days in a row of a higher dose chemotherapy began on Monday the 31st. In the previous post I was commenting about the importance of not getting complacent as I move into this next phase of treatment. That was very true. As the week went on, my fatigue level increased, calling for more frequent naps, and my nausea increased and appetite decreased, limiting my ability to eat some foods and decreasing the quantity I could be comfortable with.

In parallel with this has been increasing discomfort/pain around one end of the incision on my head (from July/August surgeries). We saw Dr. Sloan, the surgeon, on Thursday. He examined it, and offered his view that there was a 99% chance all was fine. However, at our insistence, he moved up the date of the next MRI scan from February 4 to January 8th. The nurse also requested some additional blood work, which showed improved cell counts over the week before and nothing of serious concern. However, the swollen spot on my head changed rapidly on Friday, with a blister forming over the area by evening. By this morning, it had burst. As Susanne was cleaning it up, she observed pus coming out. We contacted the doctor and were advised to come down to the ER to be seen. Dr. Sloan’s resident-on-call indicated that it looked as if an abscess had formed around a suture (stitch) that was not smoothly dissolving from the August surgery. He was confident there did not seem to be any leaking of fluid from the brain cavity. I see it as my hard head not letting go of the sutures, as it should...need to practice some more detachment like Susanne! He prescribed antibiotics and indicated that I should Dr. Sloan on Wednesday after the MRI on Tuesday..

Also going on this week, is the deteriorating condition of my dear friend Stephanie Dornbrook. On Tuesday, her daughter, Mara, sent the following message:.

“My mother's health has been steadily decreasing over the past days. I would like to request prayers for her, as her soul prepares for its journey to the next world. I would also like to request No visits, No food, No phone calls as our family spends our moments privately with our mother. Thank you for all of your love, support and prayers. With great affection, Mara Dornbrook Fojas”