Saturday, November 2, 2013

Counting up the October blessings

I have had a busy month. I generally accept whatever lands in my lap, be it screwed up genetics or the kindness of strangers (or of loved ones.) While I do go out and make some things happen in this life, lately, I have been guided by what comes my way.   A lot has been put in my path recently.

As I look it over, it has been overwhelmingly positive. 

We did Lauren's Make a Wish.  Our trip to California was a huge blessing, and Hollywood couldn't have had a better experience. I am so amazed by the kindness of strangers.  My faith in humanity, if it had faltered at all, was renewed by the generosity of so many toward my children.  Having endured two solid years of 'medical nonsense,' as I euphemistically refer to this nightmare, I was glad to be together, outside of a medical facility, and for us to just have some fun as a family.  I was very grateful to not have to plan anything.  I feel lucky beyond measure.

I went to Boston last weekend to a genetics conference, which enabled me to meet some online friends.  I would try to write about what this was like emotionally, but I am afraid that I couldn't describe it any better than my dear friend Jen Mallory already has.  So, I won't even try to, rather just direct you to her beautifully written blog: 

http://lilykaymonkey.blogspot.com/2013/10/sisterhood-of-travelling-mutants.html

There was way more laughter than should be allowed...and hideously inappropriate cancer humor.  I am a firm believer in the notion of  'whatever gets you through.'  These ladies definitely are 'getting through.' I should mention that a song/chant of "I heard a little rumor, heard that you have a tumor, you have to have some humor, can't be a doom and gloomer" probably should not be what you lead with, approaching a newly diagnosed cancer patient.  However, this group is not standard, lets just say.

Further example of non-standard, when asked how many malignancies she had had, one mutant friend had difficulty answering, because she didn't consider melanoma a "real cancer." I think that we settled on five for her, but there was some debate, and also some beer.  So don't hold me to that number.

If the mutant convention was enjoyable, it was also enlightening. I met some researchers, and learned about the things that they are studying.  I am grateful for their work, and for the fact that we will gather together, researchers and subjects alike, every year now.

While some of the presentations were very "number-y,' there were encouraging things to be found in nearly every report.  My personal favorite was a researcher out of Utah, who serendipitously learned that elephants and whales, despite their much larger size and increased number of cells, oddly, most surprisingly, have a low rate of cancer.  There is almost no cancer among elephants.  He investigated and it was discovered that this is because elephants have not one pair of p53 genes, but 20 pairs.  20!!!  When I shared this with Lauren, she asked if she might borrow some elephant DNA, and giggled enthusiastically.  I would absolutely get her transfused with pachyderm blood, if I thought it would help.  It is coming, or something of the like, though, and I can feel it. 

It was birthday season, and birthdays are joyful days, particularly in our house where we do not take them for granted.  Cannot take them for granted.  The oldest three kids all have birthdays within 6 weeks of one another, and we have had our fair share of cake.  I keep saying that I feel that good things are coming our way, without any real justification for the feeling.  Out of the blue, Dan's dad offers not just his former car, but his pride and joy, to Alex.  On his 16th birthday.  Yes, we could never have done that for him. 

While Alex is understandably excited about this, I recognize that it is a gift to me as well.  He will not only be able to get himself to soccer practice and school once he gets his license, but will be able to help me get the other kids thither and yon...if I ever get it together enough to organize after school activities beyond physical therapy for any of them. Sigh...I will get there.

Upon our return from our Make a Wish trip to California, we did scans.  They were generally good, as I reported out.  There was one node to follow up on this week.  And I had slipped in the dermatology 'once over' this week as well, one that was supposed to happen over the summer, but had been pushed to the bottom of the priority list.  This is understandable, given that we had two New York surgeries to contend with.

So, when I returned from Boston, we had dermatology for the kids, which was not completely straightforward and will require several follow up visits. Sigh... Thursday, Brent had his follow up ultrasound for the concerning lymph node, which initially showed that it had grown.  Not a fan of this.  After dropping him off at school, I went to a friends house, to have coffee and catch up.  As I prattled on and on about my worries that afternoon, I fielded calls from the hospital.  Judy is a beautiful, dear friend with the patience of Job, sitting there as I sorted through the various hospital issues on my cell phone. Eventually, the CT was cancelled and it was finally determined that we are not looking at lymphoma.

"You are a mom.  I don't imagine that you ever stop worrying, knowing that everything can be cancer. I don't know how you do it." 

I explained it like this:  Lauren had headaches all week, a symptom of a virus that has been freely shared in my house.  Because she just had scans, I was not at all worried.  It was the only reason.  Usually, scans are on a single day, marked by mounting anxiety, which we try to mitigate, followed by emotional release with the hospital phone call.  Big worry, then giant relief and celebration when we get the all clear.  And peace, and confidence (oh, except for that time when they called about Christmas brain surgery).  The scans, which are stressful, are the cover charge for any ability to relax. Ever.  This time, there were follow ups...and so the worry drags out a bit.

The good glow of clear scans lasts about 2 1/2 months.  At the end of the day, we have been granted this blessing.  So, I will run with this.  There are good things coming our way.  Looking this over, I have no idea why I ever doubted it.  I am grateful for the further confirmation this week.

Brent and I leave in the morning for NYC, armed with some oncologic reassurances, looking for orthopedic encouragement.  We will again be relying on the kindness of strangers, taking an Angel Flight from Cleveland.

Good things are indeed coming our way.  The blessings from all sides keep landing in my path.



1 comment:

  1. Hi Ann,
    I'd been reading your blog before we actually met officially in Boston at the LFSA conference! (This is Marjie by the way!!). I want to thank you for sharing your story so openly and honestly. It's hard to find other blogs about LFS. Thank you. You are such a strong woman and I admire you and your family tremendously. Please keep writing. You are strength for so many people, myself included! All my love and blessings, Marjie http://marjiepinkandpearls.blogspot.com/

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