On Thursday I was walking around upstairs without the brace, carrying my IV pole, Susanne was talking to me, and I kept walking, so I got a bit distracted, didn’t lift my leg high enough, and fell down. Thankfully not down the stairs! I sprained my right ankle and bent the IV pole up pretty bad. I had the folks at rehab that afternoon check the ankle. They didn’t see any major reason for concern, but we temporarily shifted the therapy focus from the ankle to the rest of my right leg, which is also weak, to give the ankle a rest. It was recommended that I return to using the brace to give the ankle a rest. I was able to straighten out the IV pole so that it is both usable and still collapses for transport.
At rehab, they also did a reassessment of my progress. They noted good progress in regaining strength in my right leg and my mobility skills.
On Thursday we went to Toastmasters and I gave a prepared speech. What I chose to do was entitled “Tips for the Patient and Patient-Visitor”. Obviously this was based out of the Fact-Based Spirit-Guided Path and was very well received. What I pointed out was that, for the patient it is critical that they get clear on and stayed focused on the facts regarding their particular situation. This could call for in-depth conversation with the doctor. The facts can be an assistance to reducing/avoiding worry, anxiety, and specultation and help the patient to be open to the loving support that visitors would bring. For the patient -visitor, there are several tips:
- Before entering the patients room, stop and clear away any of the frustrations of your daily life.
- Create a space for loving support for the patient.
- Listen to what the patient has to say and respond accordingly.
- Attempt to ascertain the emotional level the patient is at and, if possible match that.
- If you are able to do anything to elevate that level a little bit, do so.
- Help the patient to get clear on what the facts are about their situation.
- Do not bring in information regarding negative experiences others may have had with similar diagnosis.
We finalized plans to be at the Block Integrative Medical Center in
On Friday, we had our first meeting with the Oncologist Dr. Nock. We shared our overall approach as follows:
- Looking to establish partnership with and between the doctors providing treatment
- Not owning that I have cancer but acknowledging a diagnosis of Glioblastoma (see post for Sept 3/4) and that there is treatment indicated as a result.
- Choosing not to focus on the dismal survival statistics for Glioblastoma but looking for the best approach for long-term quality of life.
- Coordination with alternative medicine and diet for maintaining strength and immune system integrity.
We found his attitude to be very positive and honest, and he was very supportive of our approach. He indicated that he would be pleased to be in communication with Dr. Block to coordinate their recommendations. He explained the proposed treatment as follows:
- The first phase of the treatment would be radiation combined with a chemotherapy that has been found to be the most effective with Glioblastoma (Temazolimide/Temador).
- There will be a break of about 1 month.
- This will be followed by 1 year of the chemotherapy drug taken 1 week per month
Our next step is meeting with the radiologist Dr. Einstein on September 19. We will meet with Dr. Nock again on September 20 to review the recommendations from Dr. Block and Dr. Einstein and do preliminary bloodwork. Drs. Einstein and Nock are the same doctors with whom my son is working.
Our friends John and Laurie Cunningham have been hosting a meditation session at their home on the 1st and 3rd Friday evening of each month. We decided to attend and it was a wonderful time focused on the theme of “unity”.
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The rest of the story…
My primary task on Wednesday was to complete a lengthy patient questionnaire for the Block Center (18 pages!), track down Craig’s medical records and get University Hospital to speedily release records to them. It was accomplished successfully! Block got a 50-page fax. We’ve been waiting on our copies since mid-August!
It’s amazing through all of this that Craig has avoided falling. And…it’s frustrating that it happened…and injured his weak leg. I’m doing ointments on his ankle, icing it, and giving him anti-inflammatory supplements. Of course, it’s not stopping him from doing anything! His talk at Toastmaster’s was illuminating and excellent.
Friday was challenging…non-stop. Because the lawn is newly seeded, I have to hand water it twice daily, so there was that, getting the IV’s going, breakfast, getting Craig to the outpatient rehab center by 9 a.m., lunch, out the door to the oncologist’s by noon, back mid-afternoon, running to the drugstore, gas station, and UPS box dropoff, starting, dinner, meeting with the home health nurse, and starting the IV’s again. I hadn’t even done my morning prayers! At 6:15 p.m. Craig asked how I was doing. By the time I got done sharing how exhausted I was, I realized that I should have asked for help driving us to the meditation session. I’d not invited anyone to go in case we had to cancel. I called Joyce Ashman, who often goes with us and frequently works for Marriage Transformation with us, who had no plans and delightedly drove us the 35 minutes out to the Cunningham’s. I rested to and from in the back seat! I’m struggling with managing the caregiver role and balancing it with who/when to ask for help and how to take care of my own wellbeing in the process.
Laurie led the opening of the meditation by focusing us on the spiritual stage of personal growth of creating and living in unity and harmony. We then stayed in silence for about 20 minutes. After a brief period of reflection, we each had an opportunity to share. I talked about my need to be there as an outreach to feel connected with people I loved and who loved me. I then shared about feeling so disconnected (disunified) in so much of my life right now. The routines of connection that were strong for Craig and I are disrupted…praying and drinking tea at certain times, hello-goodbye hugs and kisses, etc. We are shifting as people and as a couple. I’m disconnected from my work. When I try to rest, there are regular disruptions. Quiet prayer time is hard to find, so at times I’m feeling disconnected from God. Being there in that spiritual space helped me to re-center and continue with this process of adjusting to most of life shifting and changing.
While I appreciated meeting with Dr. Nock and believe he’ll be an excellent doctor for Craig, the whole experience was stressful. I’ve been in resistance and denial about radiation and chemo and it’s just getting too real (likely starting at the end of September). However, I was most encouraged by his willingness to work cooperatively and his affirmation that Craig was the “point guard” in leading his own treatment program. As part of the paperwork for Dr. Nock, we are becoming clearer that Craig has had numerous relatives on both sides of his family with cancer. The information gathering is continuing and will be helpful when he meets with the genetic cancer specialist in November.
As Craig and I have talked about “worst possible outcomes,” we have come to the mutual conclusion that his passing would not be the worst. For us it would be him living for months/years in a severely impaired state with a terrible quality of life. Dr. Nock affirmed that radiation and chemo are likely to cause some cognitive impairment…how much is unknown. He also affirmed that, given Craig’s physical condition (he spoke of him as being very strong) and degree of mental acuity that he should be well positioned to compensate for any degradation that might occur. We are hopeful that because the tumor location is in the motor area that there will be less impact on his thinking and memory.
However, this circumstance says we must make sure our affairs are in order before the process begins (and they largely already are…just some pieces still to work on). Dr. Nock indicated that he would be honest with us if treatment wasn’t working, didn’t make sense, or would cause significant harm. It is a blessing for Craig and his son that there is new chemotherapy for brain tumors available that wasn’t approved prior to 2006, and there are a significant number of clinical trials underway that could make a difference for them both as we go forward. Anything is possible!
I seldom feel impelled to write comments on blogs, but I just have to say that I am so grateful for this blog that you, Susanne, and you, Craig, have been posting. Reading about your experiences, while providing some specific things to pray about, has also been very educational about what really happens when a family member is diagnosed with a serious illness. Though no one in my immediately family has been diagnosed with cancer, the statistics imply that someone close to me (if not me) will be diagnosed at some point in my lifetime. And knowing your experiences will not only prepare me and other readers for such life-changing events, but it also somehow makes the possibility less scary. It is so hard to know what to expect when serious things happen ... and although every case is different, it really is a blessing that you both are willing to share BOTH sides of the story. Now I feel more prepared to tackle such challenges once they come up, and additionally, I think I can sympathize better with, and be more sensitive to, other people in the community who are dealing with cancer or other serious illnesses ... and therefore, hopefully provide better help to the patient and ALSO the caregiver. Thank you thank you.
Hi Craig & Susanne, I'm just checking in to say Hi. I hope things are going okay with you all. It's been almost a week since an update so I'm trying to be positive. (This whole fact-based thinking thing is new to me!) Anyway, I'm just letting you know that I'm thinking about you.
-Natalie
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