Cancer: finally accepting that I am a breast cancer survivor – I no longer cringe when I see the pink ribbon symbol. Yeah it kind of makes me feel old and vulnerable but at the same time I feel wiser and more confident. I made it through kind of a hard thing! I also joined the ranks of a very impressive force of women. I’m grateful it wasn’t worse (no chemo) and grateful to be on this side of it. I will continue mammogram screenings and taking Tamoxifen (estrogen blocker) for five years.
Just want to give a shout out for mammograms. After my mammogram and subsequent biopsy I had no less than 22 people check out my breast. Of those 22 people, I repeat 22 people *@%*!, six of them were furtively searching for a tumor – knowing that the biopsy had tested positive for DCIS (early stage or pre-cancerous stuff). Not one of them found the 3-4mm invasive tumor that was there. These are people who know what they are looking for and are experienced in finding it. By the time you can actually feel a lump it will most likely be large enough to require chemotherapy.
Brain: Trying to figure out what to do about my two brain problems has been a bit of a Rollercoaster ride. We definitely learned that medicine is not an exact science. Many people have asked what led me to have an MRI in the first place. I had a number of symptoms such as muscle weakness in my hands, twitching, muscle abduction, and a whole list of “hyper vigilant” things. The first doctor that I saw was able to sort out the concerning symptoms from the hyper vigilant ones and suggested that I have an MRI in order to rule out MS.
Many various doctor’s visits later I found I had a collection of conflicting opinions ranging from “you are at risk of sudden death” to “watchful waiting”. I had one doctor tell me my brain tumor was near my motor strip and he had me scheduled to have it removed last August just one month after he had me scheduled to fix the other brain problem. Then his brother, also a neurosurgeon told me the tumor was nowhere near the motor strip.
Some doctor’s said symptoms could increase suddenly and be irreversible; others said they would progress slowly. I think if it were any part of me other than my brain I might not have hyperventilated after each new visit and its curious contradictory findings.
Finally, in exasperation, I decided to seek an opinion outside of Salt Lake at the Mayo Clinic. According to their website they see thousands of patients per year who have my condition - far more than any Salt Lake surgeons. With Will’s abundance of reward points for airfare and hotels and my fabulous family’s willingness to cover child care, the trip came together pretty well. And, it was a great opportunity to have a romantic getaway in the lovely Rochester, Minnesota area where the news broadcasts freezing temperature warnings on September 13th as if this is perfectly normal.
Some of my kids (not to be mentioned) have suggested that I have been shopping for what I want to hear. This may be true, but who can argue with the Mayo Clinic right?
Things we liked about the Mayo Clinic:
- Hopsital Gowns! Did it really take the Mayo Clinic to come up with a gown that covers your backside? Their gowns have three armholes and wrap one and a half times around you and so you can do a 360 and not flash anyone.
- Live music! There is a grand piano in the main lobby and they have people performing there regularly on the piano as well as vocals, violins and guitars. They also have original art and sculpture throughout the buildings.
- Bathrooms. Like everything else at the clinic everything is top notch and well thought out. (See the photo demonstrating the ample supply of wheelchairs for example.) The bathrooms had automatic everything, but the water flow is actually strong enough to clean the soap off your hands and the auto towel dispenser actually dispenses a towel that is long enough to dry you off and sometimes it was even two-ply. Also, the drinking fountains all have cups next to them so you don’t have to bend over and leave with water dripping off your cheeks and chin.
- Hospital Store. A hypochondriac’s dream. They have everything from fancy band aids to various yoga dvds and books on alternative medicine. I found this surprising given that earlier I was practically escorted from the building when I mentioned the word “chiropractor”. I actually received the same response from 2 different doctors and one said “You should see what some of these quacks have done! ”… but then he admitted that they only see the cases where things have gone wrong. I emerged from the store with a Mayo Clinic cookbook and an anti-nausea device. Will left with a giant syringe to irrigate his ears and a fancy anti-skin cancer hat to bring to Lake Powell – it even has a lifetime warranty – not against cancer, but against wear and tear and loss.
- People. All of the people from the cafeteria workers to the receptionists to the doctors were so courteous and professional. I especially liked Dr. LaChance. I joked that he was my ‘last chance’ as his name indicated. My last chance to get out of two brain surgeries.
- The last thing that I liked about the Mayo Clinic is that they told me what I wanted to hear. They reassured me about some of the conflicting information that I had collected. They did not feel like the tumor was currently growing and did not think that it necessarily needs to come out some time in my life as most of the other doctors suggested. They feel like it is perfectly reasonable to continue to watch it carefully and forgo any near term plan for surgery for the tumor. They were much more concerned about the Chiari and syrinx. They said it was not unreasonable to perform surgery to correct this as the syrinx can be serious and is at the C2 level. The nerves that tell all of your major organs what to do pass right around the syrinx and it is causing my spinal column to bulge. However, they also said it was not unreasonable to just watch this carefully. In the absence of progressing symptoms which would most likely only come on due to some kind of blunt trauma, surgery might not ever be necessary.
Happily, I’m signing off on this blog. Thank you all for your concern and thoughtfulness.
Lisa
