Thursday, August 25, 2011

Where do I begin?

No idea... I can't keep up with myself, much less spend time documenting it or analyzing it.  I think I'll just write about whatever pops into my head first and see how that goes.

Summer is officially over at our house.  The first day of school for Rebecca was yesterday.  It was a glorious day for her, as she was already happy with her teacher assignment, a happiness that was multiplied exponentially after spending a day in her new classroom.  She's excited about the school year... 3rd grade.  I remember that grade pretty well, and it's funny to see my little girl in that same place.  

Carly has decided that for school, she wants to be known as Caroline.  Just like her sister, she has chosen to use her full name at school.  Yesterday she, Jim and I attended a one-hour orientation for Kindergarten where we got to meet her teacher, see her classroom, and even ride around the block on a school bus.  Her teacher is new to the school, though not really... she was a long-term substitute last year for a teacher on maternity leave, so she's familiar with the school and the other teachers.  She's young and enthusiastic and I can see Caroline having a great year with her.  Today C went for her first full day of school, and seemed to really enjoy it.  Having that short visit yesterday really put her mind at ease about going to this new school full of new kids.  Nobody from her preschool is attending our school, so she would know nobody except that one of our neighbors is in her class.  Kind of nice for both of them, to have someone in the room that they are already familiar with.  Though knowing our Carly, I anticipate she'll be making herself social pretty quickly.

The fly in our ointment right now is the school bus.  Because we live less than a mile from our school, Rebecca does not have a seat on the bus.  The district provides busing to all students in grades K-2 but for grades 3-8 it's only guaranteed for kids who live more than a mile from their school.  We were officially notified that Rebecca did not have an assigned bus about a week before school started.  The district allows us to request a spot on the bus if there is space, but those assignments won't be made until mid-September.  So for now, Rebecca will be either getting a ride with one of us, or a neighbor in the same situation, or will walk.  If I were home during the day, I would walk the girls to school and back, as a way to get some exercise.  However, Jim is the one home during the day, and I'm not sure he wants to start that much walking right now!   I did find him some fabulous walking shoes from New Balance (go to http://www.joesnewbalanceoutlet.com/ for great prices!) so lately he's been wearing those instead of the work oxfords he got so used to years ago.  So maybe he'll be inspired to walk one of these days.

My health is okay these days, despite some bumps in the road.  I completed my 8th cycle of Sutent in July and had scans which showed everything stable.  Dr. Rini was happy about the results, well, as happy as Dr. Rini gets about things, since he maintains a definitely cautious attitude in general, as I think many oncologists do.  I mentioned in a previous post that prior scans showed 'something' on my L3 vertebra, so I got to meet another Cleveland Clinic doctor and have an MRI of the lumbar spine in late June.  The MRI showed that the lesion is likely a hemangioma, so nothing to be concerned about.  My neurosurgeon (how weird to say that!), Dr. Angelov, wants me to have another lumber MRI in September to compare, but she feels pretty confident that we won't see anything bad.  That was definitely great news.

Other parts of my body are still causing trouble, however.  Despite being surgically post-menopausal, I've continued to have occasional spotting.  At first it was thought that a polyp was the cause, so we hoped the D&C I had in February would take care of it.  Of course that didn't happen, so I went in for a 3-D ultrasound and an endometrial biopsy.  My endometrial lining is thicker than it should be, though not 'scary thick' in my doctor's words, so most likely I am having bleeding due to 'peripheral estrogen' in my body (aka that stored in my plenteous fat tissue!) causing my body to think it needs to cycle.  Much discussion among several doctors took place to decide how to deal with this.  There were 3 options put on the table:

  1. Have me take progesterone orally for 12 days each month to trick my body into cycling without bleeding so to speak.  Pro:  non-invasive, easy to do  Con:  might not work for me
  2. Have an endometrial ablation - in laymen's terms, burn out the endometrium so there is nothing there to build up and slough off.  My gyn was concerned that my 2 C-sections would preclude this option from being feasible.  Another gyn she consulted with thought it would be a bad idea because later there would be nothing to biopsy if I had no lining any more.  The surgeon who did my ovary removal last year thought it would be a good idea, and Dr. Rini had no problems with it, other than planning it for the middle of a Sutent break so that I could heal before going back on cycle.
  3. Complete the hysterectomy by removing the uterus and cervix.  Pro:  This would sure take care of the issue!  I would also no longer have to worry about either metastases to the uterus or cervix, or developing uterine or cervical cancer.  (Yes, Virginia, you can have multiple primary cancers.  Fate does not care that it would be unfair.)  And I would never have to have a Pap smear again!  Con:  Surgery.  Major surgery.  Sure, they can do this less invasively than in the past, but my gyn in particular was concerned about putting my body under more trauma right now.  It would also mean a longer break from Sutent, and I would have even more internal scarring from surgery than I already have.
I decided to go for door number 1 for now.  There is no harm in trying the progesterone first; if it works, then I can just carry on as usual until my 'peripheral estrogen' passes out of me, whenever that might be.  And if #1 isn't the right door, I think I will go for an ablation.  Part of me would love to get rid of the rest of these troublesome organs, but the rest of me really does not want to have a surgical procedure that could possibly be avoided.  I start progesterone at the beginning of September and am hoping for the best.

As if this wasn't enough, the wound in my leg that started as a likely ingrown hair in April, turned into a full-blown ulcer.  In my quest to meet even more Clinic physicians, in June I added to my list a doctor in the Clinic's lower extremity wound clinic.  At first he decided that I should remain on Sutent, but the ulcer just grew.  Dr. Rini told me when I saw him in July that I definitely would need to take a break from Sutent for this thing to heal, as Sutent will stop wound healing.  As of now I am two weeks beyond my usual break, and the hole in my leg is finally shrinking.  I had two weeks of Bactrim, 1 week of Cipro, tried 3 different anti-microbial things to put on it, I have to keep it bandaged with gauze and tape, AND, I get to wear an elastic 'sleeve' on my leg that starts at the knee and goes to my toes.  (Trade name:  Tubigrip)  The Tubigrip is to keep my leg from swelling; it's surprisingly NOT hot to wear, which is a relief.  I was also told to keep my leg elevated when possible.  It's been a drag not being able to get active over the summer, and I've gained some weight because of being even more sedentary than usual, but I didn't have much choice.  I was seeing the wound clinic folks weekly until last week, when we saw definite improvement.  I got an appointment reprieve for this week and I hope that by next week it's really much smaller.  I want to get back on Sutent, despite the lovely side effects.  And I want to do water exercise at our local rec center, which I am forbidden to do until the wound is closed.

So that's the medical report of what I did during summer vacation.  Next installments will be about more fun things, hopefully!


2 comments:

DAVID HAAS said...

Hello,
I have a question about your blog. Please email me!
Thanks,
David

Laura said...

Hello!
I am a student at the University of St Andrews, Scotland and I am currently doing a research project on the role of online blogs for individuals impacted by cancer. I was wondering whether I could talk to you about your opinions.

I hope that my research will promote online blogging as a critical resource and increase its awareness.


Please email me back if you would like to take part.



Thanks in advance :)
Laura
Lke2@st-andrews.ac.uk