Year 1, Week 25: ‘Unique’

1:25

I had my usual quarterly clinic visit this week. Another sign that I am on the routine track was being examined by one of the new fellows. It started off amusingly enough, when he walked in and said he had heard a lot about me as I was ‘unique’. When I made a bit of a face, he quickly clarified that there are few mantle cell lymphoma patients who have undergone allo stem cell transplants and, by implication, that are as doing as well as I am. So ‘unique’ in a good sense.

We had the usual discussion of next steps, both separately and with one of the senior hematologists. In essence, I am in the ‘watch and wait’ mode. No need to do any scans or other tests; as they indicated, should my mantle cell lymphoma come back I will know and no test will provide any significant heads-up.

On some of my particular issues:

  • Stomach burbling and gas, and slight flare up of a skin rash: not a concern, ongoing indicator that my body continues to adjust to my new immune system, and the latter is doing its work (likely also keeping my lymphoma at bay).
  • I did ask, based upon advice from one of my readers as well as The Patient from Hell book, about Polymerase Chain Reaction (PCR) and Ki67 test. Test is normally only done through biopsy of lymph nodes; since I have no swelling in my nodes, no reason to have test.
  • As my B12 is low, I need to restart taking 1,000 mcg/d.
  • No major issues or preoccupations with my upcoming hernia operation (mid-February). All reassured me a minor operation, and confirmed a good sign that I could now worry about this kind of health issue.
  • travel medicineI raised the issue of travel to more ‘exotic’ locations than Europe over the coming year, given possible future trips to visit family and friends. Encouraging. The fellow noted my general good health post-transplant, the hematologist said that my immune system should be able to handle any needed vaccinations and medication. I just needed to consult a travel doctor before confirming plans, with all of this being contingent on me staying on track. So while I still will always have to be more careful than most, my horizons may be able to expand over time.

Some thoughts on ‘watch and wait.’ While this medical expression has a technical meaning, I still react to the implications of the ‘wait’ part. Ideally, like ‘waiting for Godot,’ something that never comes, but with the fear at the back of my mind that my cancer may be ‘waiting’ to come back. It is what it is, and I am lucky to be in this position, but still funny how even a neutral medical expression can trigger associations and fears.

What is also striking is the overall tone of my appointments, not only with the members of the medical team that I have grown to know and appreciate over the past few years, but also the newer members of the team. Part of it the nature and intensity of the experience together, part of it is their genuine pride that they have helped me come through the ‘other end’ relatively well, and part is the excitement that I have taken the time to write a book about my cancer journey. Not quite family, but the connection is there.

We went to a session on vitamins, minerals and herbs for cancer care, organized by the Ottawa Integrative Cancer Centre, featuring pharmacist Heather Boon and naturapath and head of the OICC, Dugald Seely. The first part focussed on the regulatory system for health products (dietary supplements in USA). More regulated than I expected, in terms of quality control and accurate labelling, with safety data, including side effects and interactions, having to be provided to Health Canada. Health products can either be labelled as having scientific evidence for effectiveness (clinical trials) or with a traditional use claim. Australia apparently has a similar regulatory approach (approval prior to being available for sale), the US, not surprisingly, has a more free market approach allowing for products to be sold, with false claims and safety issued being resolved through the courts.

While the presentations and discussion did not get at the more practical (‘what should I do’) as I would have liked, some good general advice:

  • naturapathEnsure that all health care providers know all the medication, supplements and the like that one is taking to avoid any possible interactions.
  • Complementary medicine is just that: complementary to conventional medicine. Don’t try to treat cancer through health products only.
  • Generally better to avoid health products during chemo given possible interactions and the stress to the body from chemo.
  • Tends to be greater use in health products post-treatment as part of the recovery process, including prevention of relapse.
  • There is a paucity of sound research on most health products. Absence of research is no reason not to try some health products, provided no known risks (e.g., green tea).
  • Some studies are showing little benefit from anti-oxidants. On Vitamin E, some of the prior studies showing no benefits used synthetic Vitamin E rather than natural, so evidence is more mixed.

Both in the presentations, as well as some chatting with the presenters, confirmed that the greatest benefit comes from the basics: not smoking, eating healthily, and exercise. As Dr. Boon said, ‘While I would love there to be a miracle pill or formula, we simply don’t have enough evidence.’ But with lifestyle we do, so focus on that.

I have been doing some further ‘tweaking’ of my blog, primarily the side bar to improve navigation and reduce duplication. One of the challenges with blog maintenance and refreshing is that one no longer sees certain issues; fortunately, one of our friends has started a blog and helping her with some of the settings has forced me to review mine. Let me know what your think.

Not surprisingly, some people prefer the former approach of daily article summaries; others prefer the current approach of weekly ones. While the latter provides some minor time savings to me, it is harder to choose and fit the articles together, which is good mental exercise for me.

Late QuartetWe saw A Late Quartet, a story about a New York-based quartet, where the simmering tensions between the various members emerge when the senior member discovers he is in the early stages of Parkinsons. Very well acted (Christopher Walken, Philip Seymour Hoffman, Mark Ivanir, Catherine Keener) with credible characters, a lovely musical score, and some very powerful teaching scenes that provide a connected yet distant narrative on music. And underscoring it all (pun intended), the dynamic of passion versus control, in both the musical and personal aspects.

Next week, is relatively busy week. A pulmonary function test (PFT), my Lymphoma Support Group (with a presentation on chemo brain), and a celebration by the Blood and Marrow Transplant Team of the volunteer stem cell courier program, a good chance to catch up with the various members of my medical team, apart from catching up with a number of people.

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3 thoughts on “Year 1, Week 25: ‘Unique’

  1. I’m in the same “watch and wait” mode right now. The hardest part for me is maintaining that “attitude of gratitude.” Staying grateful for the little things – how quickly I forget that a few short months ago I was confined to my couch/bed. It’s the small stuff that counts: being able to walk somewhere, make dinner for my family, take the public transportation into Paris to see friends, or just have a cup of coffee in a restaurant. The fact that I now know that it could all come crashing down around my ears again just can’t be allowed to “pourrir” the NOW. A friend of mine refers to that as “living in the wreckage of the future.” :-) When you are living with cancer that is absolutely the last place you want to be wherever you are in the treatment cycle.

    Service to others seem to help most with this. Takes me out of my own head, widens my world and keeps me firmly in the present: this person, this place, this moment. I do some but not nearly enough – it’s a work in progress. :-)

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