Tuesday, November 26, 2013
It was definitive 5 years ago today, although I had been waiting for the shoe to drop for a week. On 11/19/2008, I had a mammogram done that was obviously abnormal. On the 21st I had a biopsy and on 11/26/08 I got a phone call at home. The slides and stains and everything were finally back. I had breast cancer and needed an MRI that day to determine the extent. It was an aggressive kind of breast cancer. I needed xrays and CT scans to determine if it had spread.
So 5 years ago I was crawling into an MRI machine for a breast MRI. I remember looking at the tech who said “There’s no graceful way to do it. “ You get up on your hands and knees and lower one breast into each of 2 Plexiglas boxes then lay on your stomach. You have a mirror at 45 degrees to be able to look down and see out into the room but it’s a long 45 minutes.
I had planned to go back to work after for the last hour before the Thanksgiving holiday (11/26 was a Wednesday that year) but my boss rightly knew I wouldn’t be much use for an hour so told me just to go home.
For some reason, I went to Toys R Us. I really don’t remember why but I remember calling my sister in tears from the parking lot to tell her I was sorry to tell her she now had a positive family history of premenopausal breast cancer (our mother had post-menopausal breast cancer which doesn’t really increase your risk). She graciously volunteered to disseminate the information to my mother and our siblings so I didn’t need to.
There wasn’t much to be thankful for that year.
The next few weeks were a whirlwind of tests for metastases, a scintigraphy to see which was my sentinel node (a process that takes a longer time than we were led to believe—if you ever need one, tell your husband to be prepared to wait a long time), a double mastectomy (due to the aggressive nature and high probability for recurrence in the other breast), a post-operative bleed that landed me in surgery again and the ICU. I had the holidays off as my oncologist was out of town, then 6 chemo treatments and then it was done.
It is a weird feeling when you have that last chemo treatment. Our department gives you a graduation certificate and suddenly the people who have been asking you every single symptom you have for 15 weeks just say “OK. See you in 3 months.” You feel like the floor has dropped out. You were “sick” and a “high utilizer” and now you are just “normal”
So, then, I just went on with my life. I had to wear my wig a few more months then had hair much shorter than I had ever dared but it became a non-issue . I had some lymphedema or swelling in my right arm where my lymph nodes had been removed but with early aggressive treatment, it resolved. Breast cancer was in my past. I had bad side effects from tamoxifen but a review showed the benefit of the med for me was low. My oncologist retired and didn’t send me to a new one – just told me to follow with my family doctor.
Last fall, my “markers” were elevated. A PET scan, which cost $7000, was normal. It seemed like a foolish test to have done and, again, a review of the literature suggested that checking markers in asymptomatic patients does not really benefit the patient. Especially not checking every 3-6 months.
This fall, my family doctor checked my markers for a 1 year follow up. He, like I, knew that with the normal PET scan last year and my feeling well (I just did my fastest 13.1 – 2:57 walking the race) it was probably a formality.
It wasn’t. The numbers were much more elevated. I contacted my oncologist’s office and was assigned a new doctor. He ordered a bone scan, a CT scan, other lab work. After the CT scan showed 6 “lytic lesions” or holes in various bones, he ordered a bone biopsy which confirmed these were metastatic breast cancer lesions.
A month ago, I HAD breast cancer. Now I HAVE breast cancer.
I am on new medicines with some side effects – none intolerable yet. I have follow up scans in February and then I can have the 2 points to make a line to see if I am in the 18-24 month group (unlikely as I still “only” have mets in my bones) or in the 6 year group (more likely given my lack of symptoms but hard to know how aggressive the tumors are and how well the new meds will work). Either way, I am looking mortality in the face and worrying about all sorts of things like where I’ll get insurance once I can no longer work and how long I will be dying as opposed to living.
I’m back to being a high utilizer, which I hate. I don’t want this to be the center of my existence and will keep it on the back burner as long as possible. I worked hard over the weekend at Annie with no problem and I hope that continues for a while.
My oncologist told me that the 5 years for 5 year survival starts the day you are diagnosed, so for me, it’s today. The next five won’t be so smooth. I wish I could go back to “HAD” from “HAVE”
Saturday, November 23, 2013
When I pulled up Salisbury on the internet before we went to England, I saw that it was only 10 miles from Stonehenge. The site wasn't on our itinerary but the guide agreed that it would be worth a small detour to go.
We left a few minutes early on our way to Oxford. Apparently, as of 2 years ago, when he was last there, you could drive to the parking lot 75 feet from the site, then you could take pictures without paying Due to the fragility of the site, unless you pay for a sunrise or sunset tour, you can only go as close as 50 feet. Plus, it doesn't "open" until 10 AM, too late for us.
So we drove down a very long detour and ended up where they were doing construction on a new visitor's center about 1/2 mile from the site. Now everyone will have to pay -- unless you have some wits and wiles.
This is from the parking lot with a zoom.
We drove around a back road
Here's the pics we got. Different and not really as "spiritual" as some have told me they'd found when visiting, but it was our vacation, so our experience.
Can't wait to virtually get there with my fellow 5%ers!
Thursday, November 07, 2013
"All who wander are not lost." Tolkien
I went to the group run tonight at the Y. It's way out of my comfort zone- in part because I don't run. I walk pretty fast, The theme tonight was Salomom shoes. We got to try on some cool new trail shoes. We also were trying out headlamps. My husband got me one for Christmas so I didn't need to try those.
We took the local cross country trail. It's about 1.5 miles. Definitely needed the lights! I lost sight of the group after about 1/4 mile but I kept up a 12 min mile pace. The trail shoes were AWESOME- I need to get some.
Anyway, near the end of the circuit, I saw lights coming back toward me- I found out that the organizer sent them to find me- they thought I was lost.
No, just slow.
"All who are last are not lost" Hess
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