Susanne had been experiencing some abdominal pain over the last couple of months. She went to the doctors and they diagnosed a routine ovarian cyst with no action needed, but in the process found a polyp in her uterus, that is most likely benign. On November 28, she went into the hospital for out-patient surgery to have it removed. Within 45 minutes of going into the OR, the doctor came out to report to me that the procedure went as expected and there were no complications. Biopsy report is expected within a week of the surgery. Susanne was put under general anesthesia, with assistance from our friend, Ban Twaddell, who happens to work as a nurse-anesthetist at this hospital, so she needed to be in the recovery area for an hour or so afterwards. Because I am not yet permitted to drive, our friend, Janet Lyon, provided transportation. We actually went out to a parking lot the night before to see if I was physically/mentally capable of driving just in case Susanne needed me to urgently drive. I was pleased to find that I was. The reason I’m not permitted to drive it is that the leg spasms of July 17 were classified by the surgeon as seizure activity. Ohio State law imposes an automatic 6 month no driving restriction following last seizure activity. Prior to the end of the 6-month period (January 17) I will have a formal driving fitness test at the Rehabilitation Center.
I started into my care-giving opportunity by loading an MP3 player with some of Susanne’s favorite meditative music and the Long Healing Prayer (You’ll recall that I use a CD of this prayer during MRI scans and radiation treatments). It was wonderful to be able to care for her, as much as she’d allow, and prepare some of the meals over the next couple of days. A small recompense for all she’s been doing for me since July.
On Friday November 30, we attended a movie night at the Gathering Place. They showed the movie “The Big” with Tom Hanks as the lead character followed by discussion about how the movie related to our cancer situations. In the movie, a 12 year old boy makes a wish to “Become big”. Overnight he, externally, becomes an adult but on the inside remains a 12 year old. The discussion got into numerous areas but, for us, the richest conversation was after we got home. In the car, we began some discussion that posed questions for me that I requested time to ponder on before talking further. I immediately went to my personal journal and wrote the following: “Two questions loom large for me in the conversation with Susanne after watching “The Big”.
- 1. Is my perspective of my path, since diagnosis of the tumor, as a spiritual journey just a drug-induced escape? As I continue to reflect back, I see that I was truly guided, by what I’ve come to call the Fact-Based Spirit-Guided Path, to bring the Three Tools of Healing with me and ponder on putting it into practice before I had the first mg of steroids in my system. There is no question that the steroids eventually hooked onto that, elevated my excitement, created an edge and grandiosity that eventually diminished during the 3 week phase-out period after the surgery. The core spiritual experience is, however, solid and real. (Susanne’s comment, during the discussion, on our different journeys was that I was flying high on drugs and she was dealing with the extreme angst from the uncertainty of what was going to happen to me. My characterization has often been that I was in heaven and she was in hell. We have both agreed to refrain from using these characterizations in our conversations, as she views her path as spiritual as well…just very different.)
- 2. Am I in denial about there being elements of “ordeal” in this journey? What would it look like to experience the full range of emotions around what’s happening…I resolve to be more immediate in doing so and see what happens. It’s not all sweetness and light. I am scared that I’ll not succeed or that my quality of life will severely diminish.
Baha’is all over the world have been geographically grouped into Clusters as part of an effort to build neighborhood-based activities such as children’s classes, junior youth groups, spiritual study circles, and devotional meetings. On Saturday December 1, we attended a very uplifting gathering, called a Reflection Meeting, of the Baha’is in our Cluster.
On Sunday, December 2, we had a delightful visit with my very long time friends Stephanie and Dustin Dornbrook. We first met in 1971 and our children grew up together. Stephanie was diagnosed with pancreatic cancer over 2 years ago. The statistical survival prognosis for this form of cancer is even more challenging than for my diagnosis of Glioblastoma multiforme. Since her diagnosis she has survived to witness the marriage of her youngest child and the birth of her first grand-child. She was recently advised that the cancer has now spread as a mass behind her stomach and is inoperable. The prospect of losing my dear friend, Stephanie, in the near future, deeply saddens me.
On Monday December 3, I had my first MRI scan following the completion of the radiation treatment. The scan showed no tumor growth and the swelling in the brain continues to abate (YEAH!!). The radiation/oncologist indicated that he is baffled as to why my numbness is not abating but gradually increasing. He had decreased the steroid dosage last week and prescribed a phase-out dosage, because the drug was not reducing the symptoms. We meet with the hematology/oncologist on Thursday and have requested a referral to a neuro-oncologist. This hospital’s neuro-oncologist left earlier this year and has not yet been replaced. We are now seriously considering that the chemotherapy may be causing me some lingering symptoms.
3 comments:
Craig,
I pray that Susanne is feeling better. What a great gift to both of you that you can take care of your caregiver. These dear family members are certainly my heroes. I couldn't go through these changes alone. Thank you for continuing to share your journey with us.
The rest of the story…
I was nervous going into surgery a bit, so it was helpful having Craig there with me. He’s especially good at holding my hand during anything to do with needles! I was concerned about him getting too tired…hard for me to let go of caretaking even for a few hours…but he did fine. I loved coming back out of the anesthesia hearing the healing prayer in my ears. Before the surgery, I was having this fantasy of having a near-death experience and coming back from it with the ability to do healing. I’ve read about that happening to people. I’m always wondering about what miracle might cure Craig! But, with a friend sitting in the anesthesia position at my head, my wandering off to heaven briefly might have given him a heart attack, instead!
The surgeon did an excellent job, and bleeding was minimal. I took it easy for a few days, but overall the recovery was smooth. Our lives are so structured around me taking care of Craig, that it was difficult to shift roles. Craig also gets antsy quickly, so he was out in the yard handling the leaves and back to work, etc. quickly, too. I think God was probably wise to assign us the roles that he did!
Once Craig got behind the wheel of the car, he started talking about if I was laid up more than a couple of days, he was just going to drive. I had to remind him that him driving was for emergencies only. Now that he knows he can drive reasonably well, he’s getting more impatient to be back driving. We are strongly hoping he passes the driving simulation test in January.
We had some communication with Dornbrook’s when Stephanie was first diagnosed, but we never visited them. We just didn’t have any conception of how important and helpful it was until we went through this cancer journey, too. It was wonderful to see them, and we are back attending support group meetings with them. It is also very, very emotionally difficult to watch Stephanie move into the later stage of her life, feel Dustin’s sadness and anger, and be triggered into wondering what is ahead for us. Stephanie officiated our wedding. Dustin did some of the roofing and siding on our home. Craig’s children grew up with their children. Their eldest daughter, Mara, was in our very first relationship workshop. We officiated the wedding for their son Mendon. Layers upon layers of connection and memories.
As Craig’s numbness increased significantly after treatment, I could feel my anxiety growing. Was his tumor re-growing? Because Craig gets very upset if I project potential negative outcomes, I didn’t say anything about my concerns. But, I was in action mode getting the doctor to meet with him within a couple of hours of the MRI scan! After the viewing of the clear scan, the relief was clearly present for both of us. Craig had been worried too. We have work to do to be better at sharing legitimate concerns and not totally setting them aside.
It was a bit frustrating meeting with the doctors. Part of what seems to be happening is a “halo” effect. Craig has done very well with the treatment. The doctors, therefore, seem to have difficulty seeing and addressing any negative symptoms or seeing the numbness as a potential outcome from the treatment (it’s a more rare side-effect, but it is listed in the drug literature). Finally, during the physical exam the oncologist was able to see that there was deterioration of sensation in Craig’s right side. He often could not tell the doctor whether his toes were up or down as the doctor moved them. He agreed to Craig taking Vitamin B6 as a treatment. Of course that then raised some questions for me…I have some right-side numbness/neuropathy from taking too much Vitamin B6 over the years! But, all the practitioners have agreed on a dosage of about 100 mg a day, which is the maximum safe dosage. Overall, it was great to hear the doctors very upbeat about how Craig is doing and feel confident that he is safe to travel.
wow, this is esther detally; bill and I are shocked to hear of your battles; but encouraging also; we are friends of Ann Clavin, now in China; will say prayers; wonderful you are blogging; much love and total prayers, esther and bill
pasadena, ca
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