Really good article if you are in need of a helmet ;)
Brownie points if you know what that quote is from ;)
Dan Harris, Keynote Speaker
If you haven’t read “10% Happier” by Dan Harris I would highly recommend it!
I have been totally slacking in the blog department. But it’s not because I have a lack of medical material to report about these days. Nope. Quite the opposite in fact. The last 3 months I have had more appointments and tests than I ever have had before.
I have always had bad eyes. Like everyone in my family, I am near-sighted. I started wearing glasses for distance in about the 6th grade to see the board in school. Eventually my vision worsened enough that I started needing glasses all the time and once I got old enough I transitioned into contact lenses. Over the years, I had a pretty good system where I went to the optometrist every other year and reordered my one year prescription of contacts and managed to make them last (in combination of wearing my glasses) until my next appointment.
In September, I went for a routine eye exam with my optometrist. I felt like my eyes had worsened and probably needed a new prescription. However, I expected to be in and out of the appointment fairly quickly, with the outcome resulting in an up-to-date prescription that would allow me to order fresh new contact lenses. Unfortunately, this wasn’t in the cards.
While the optometrist was checking my eyes he noticed that the vision in my left eye was not improving with a higher prescription. This is actually my least favorite part of the appointment when the eye doctor says over and over, “Which is better: 1…2…1…2?” I have always had a hard time with that. After my eyes dilated, upon examination he noticed that there were “shiny spots” on my left macula compared to my right macula. This prompted him to refer me to an ophthalmologist within the next week. He said, “Sorry it wasn’t a ‘See you next year!’ appointment.”
I went to see an ophthalmologist named Dr. C who did a field test and a optical coherance tomography (OTC) scan. The tests were normal (apart from two small cycles in the parafoveal of my left eye) and upon examination she did not see anything wrong with my macula. She said to return for an appointment in about 3 months.
About a 3-4 weeks later, I noticed my vision started to get whacky. I felt like I couldn’t see my computer very well and the words on the screen were missing letters or parts of letters. I noticed this also while driving and reading highway signs. I called Dr. C and she recommended coming in for an appointment. She repeated the OTC scan which then showed bilateral cystoid macular edema.
See those big holes? Yeah. Not good.
My opthalmologist was a bit shocked, and actually questioned if I was the right patient and wondered if there had been some sort of mix up with the tech who performed the OCT scan. Unfortunately…no mix up!
I returned to the office a few days later and had a fluorescein angiography – a test that revealed bilateral retinal vasculitis. Retinal vasculitis can be idiopathic or it can be caused by an infectious or autoimmune process. The first step was to rule out any type of infection that could be causing the retinal vasculitis. The first-line treatment for retinal vasculitis that is not caused by infection is prednisone, but that would be contraindicated if the retinal vasculitis were caused by infection. I was tested for a million different things and during that time my vision reduced to 20/40. Scary.
No infectious cause was found and I was prescribed prednisone. Steriods. Roid rage. The prescription was for 50 mg daily and was told to taper by 10 mg each week for a total of about 5-6 weeks.
Of course, I turned to google and began researching retinal vasculitis, a “sight threatening condition”. A lot of very scary things can cause retinal vasculitis. Then, I began researching prednisone. Mood swings. Weight gain. Irritability. Anxiety. Moon face. Diabetes. Bone loss. Ahhhhh. The alternative? Blindness.
Insight: News and Information from Dana-Farber
J and I celebrated our third wedding anniversary this past week.
Awwww, I know. Huzzah for us!
Coincidentally, I had to reschedule my 3 month labs and follow-up appointment with Dr. R due to conflicts, and it happened to fall right around our anniversary. I decided since we had plans to be in and around Boston for the day to celebrate our anniversary, it would be logistically logical to schedule my labs and 24 hour urine drop off sometime during that day. So, our Anniversary Day schedule was as follows: 11:30 brunch, 2:00 blood work and 24 hour urine drop off, time around Boston and then a nice dinner at Top of the Hub to watch the sunset.
Best laid plans right? This plan all sounded well and jolly but then I realized…from 11:30-2:00 is quite a bit of time! We’d be carting around the jugs between the time when we left our house, arrived at brunch, ate brunch, and then went on to Dana-Farber.
Our conversation during brunch went something like this, as I started to visualize what might be happening in our hot car:
Do you think the jugs are doing okay in the car?
Do you think there is enough ice packs in the cooler?
Do you think the urine is cold enough?
Do you think we need to bring the jugs in here?
Nothing says romance like discussing jugs of pee over brunch, eh?
Luckily, the jugs were fine. Nice and chilled. And, on a side note, it’s recently come to my attention that not all labs require 24 hour urines to be cold. MD Anderson’s lab for example: no refrigeration necessary. Wow. Well, that must be nice!
Overall, a very nice day to celebrate. Blood work, jug drop off and all.
When J and I got married, instead of giving out traditional wedding favors we decided that we wanted to make a donation to something close to our hearts in honor of our wedding guests. We decided that we would donate to Dana-Farber not really because I was a patient there, but because we know many friends and family who have been patients there. We were married in 2011, almost 2 years into my initial “no big deal” MGUS diagnosis. Little did we know how much time we would be spending there during our first few years of our marriage since I was reclassified to SMM before our first wedding anniversary. We’ve continued to make a donation on our anniversary every year since our wedding in 2011.
That being said, because we are somewhat recurrent “donors” we receive a Dana-Farber magazine called Impact. In the summer edition of Impact there is an article called, Leukemia & Lymphoma Society grants delve deeper into biology of blood cancers, broaden access to clinical trials. This part of the article was really interesting to me:
Sounds like good research to me!
“I wouldn’t give up the traditional treatment for anything, but the alternative treatments I think work with my head as well as my body and that’s an awfully important part of getting well and staying well.”
Since I am on my mindfulness and holistic living kick, I thought I’d share some information about The Leonard P. Zakim Center for Integrative Therapies. The video above highlights some of the key integrative therapies that are used at that center at Dana-Farber.
I think that quote from the video sums up how I feel about using any integrative therapy. I think being in the “early” stage of myeloma as either an MGUS or SMM patient, it’s important if at all possible to begin using these types of strategies, as a way to reduce stress as well as to prepare for any treatment that may be in the future.
Here is some more information about myeloma patient Lenny Zakim, named for the Zakim Bridge in Boston as well as the Integrative Therapy Center at Dana-Farber. He passed away in 1999 and was only 46 years old.
“The Zakim Center was the dream of its namesake, Lenny Zakim, who as a Dana-Farber patient found comfort and renewal by combining acupuncture, massage, Reiki, and other integrative therapies with his chemotherapy and radiation. Throughout his five-year treatment for multiple myeloma, Zakim worked tirelessly to make integrative therapies available and affordable to all Dana-Farber patients.
Employing the same passion he displayed as an attorney, civil rights activist, and New England Region director of the Anti-Defamation League, he worked with doctors, administrators, and other patient care advocates to make his goal a reality. Just before dying at age 46 in 1999, Zakim was able to announce the establishment of the Zakim Center, which opened at Dana-Farber the next year.”
Crawling around… noticing so much cat hair…
That being said, I had an MR arthrogram with intra-articular contrast and MRI yesterday at New England Baptist Hospital. I was very apprehensive about having this test for a couple of reasons. The first reason being that intra-articular means the contrast is injected directly into the joint under the surveillance of a special x-ray machine called afluoroscopy. I am very weary of having anything injected into my shoulder since last September. :/ I have also read that in some individuals, imaging contrast has been traced as the preciptating factor prior to the onset of a brachial neuritis episode. AND, as I’ve written about previously, there are studies that have shown that gadolinium may cause myeloma cells to proliferate. Yikes.
After the arthrogram, I had to go to the MRI department for the actual MRI. The hilarious part was they wouldn’t let me walk there by myself. At New England Baptist radiology is at a lower level and MRI is above and across to the opposite side of the hospital. So I had to be pushed in a wheelchair (wearing my lovely hospital gown and robe) through the waiting room, up the elevator, down the hall, through the lobby area and into the MRI waiting room! Anyway, then the MRI was just a regular MRI that probably lasted about 30-45 minutes.
So far no throbbing pain in my shoulder! Woohooo!