Do you sometimes wonder when the other shoe will drop?
I'm working on another blog post for Side-Out, and I was wondering if you would share some of your thoughts with me.
I had acute myelogenous leukemia, but I currently work for a breast cancer organization. Although I know that leukemia and breast cancer are very different, I think patients with both illnesses share worries about relapse and quality of life.
I am 32, and I've been in remission since October, 2008 when I had a stem cell transplant from my sister. The transplant was my back-up plan after I was first diagnosed in 2005. I had gone into remission immediately, and eventually began working again in February of 2008. I signed up to do my second half marathon with Team in Training, and life was getting back on track.
Then I relapsed. Once again, I went through my induction chemo for a month in the hospital, followed by chemo as an outpatient, an infusion of radioactive iodine, a blast of total body irradiation, many blood and platelet transfusions, and finally my transplant. I moved to Seattle for four months to receive the transplant and to be monitored by their world-renowned transplant team.
I'm doing wonderfully now!! I've enrolled in Team in Training again, and I'm doing a half and a full marathon this fall. I've been working at Side-Out since January, and I really enjoy it. I am dating a wonderful guy, and I'm pretty sure he's the source of my lingering smile.
But I worry. I lie in bed sometimes and I think: "I wonder how long this period of joy and lightheartedness will last?", "I wonder why my heartbeat is a little faster than normal...I hope my blood counts are OK.", "What's that weird aching in my side?", "What happens if the leukemia comes back...what options will I have then?"
I do not consider myself a "waiting for the other shoe to drop" kind of gal, but sometimes I can't help it. Do you ever have the same feelings? How do you deal with them? I basically make myself think of the worst possible scenario, which would obviously be dying, and I think about what I can do to prevent that (well, obviously, I can't prevent it forever! hahaha). Once I realize I only have control over certain aspects in life, I calm down. I can eat well, exercise, consult with my doctors and nurses, reach out to friends and family, write, and go out and enjoy life...aside from that, it's not up to me. This brings me great relief.
I would love to hear your input...do you worry sometimes when life seems like it's going all too well? Does part of you expect that it won't last?
Julie
Comments
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I, for one, waited for the other shoe for about 3 years. I had a scare about 1.5 years out, in the "good" boob. I actually agreed to wait 6 mos. and reshoot the mammogram to see if there were any changes worth doing a biopsy on. I had been advised, rather casually, by the radiologist, that I wasn't to worry, the microcals that had popped up since the previous mammo were "likely" due to the augment surgery I'd had a few months before. LOL LOL, LOL. NEVER be casual with a woman who has amputated a breast for cancer !
I insisted on an ultrasound RIGHT NOW. He again said he could find nothing and I wasn't to worry. Just return in 6 mos. LOL, when he looked up again not only was I Gone, I had mentally shredded his face with my fingernails.
I ret'd home to call my PS, schedule an appt with him and took my films. After looking at the films, he admitted he was "only a plastic surgeon" and referred me to see a breast surgeon (I didn't get along with my original one: his lab had me at ER- when I was Er+) that afternoon (knowing that a woman who's had bc is not rational, I'm sure) and also because we live 2 hours from that city.
The breast surgeon looked and said he'd have his breast rads doc look and they agreed that waiting 6 mos was worth it because if we did a bx, we'd just be doing more surg. and likely come up with more microcals if, in fact, that was the cause.
OK, I patiently waited and found that I wanted to get my mammos where the breast rads doc was(not the local turkey who didn't understand that recurrance is a terror causing incidence)--and so I did, and have since, btw. It WAS due to surgical, Not bc. So, been there, done that. I cried all the way home, I think. I don't really remember much about it. I do remember that my husband bought me a pair of earrings to celebrate. He also wandered around a churchyard with a ginko tree, picking up beautiful yellow leaves for me, finding out that that is my favorite leaf. I have ginko leaf earrings (not from the tree. LOL)
Time and no recurrance has brought me the greatest relief. I get my yearly mammo, so does my daughter, even tho she has to fight with her ins. company each year to get it covered. For the first 2 years or so, I thought I had mets to everything, even a hangnail. We used to joke on here about cancer of the toenail and multiple other body parts. Get a cold, lung cancer, diarrhea: bowel cancer. And God help you if your back hurt!!! That's one of the first places bc mets to.
And if you have a breast cancer history ANYthing wrong demands further testing, according to your doc, just to make sure. I had a bleed in my spinal cord--neurosurg consult insisted that we HAD to do surgery and get a bx, you guessed it, because of my bc history. My gut and a kind radiologist who said people just get these things and no one knows why, but they are rare told me to wait 6 mos and see what another MRI would show. My gut mostly, but it was almost gone in 6 mos, so it wasn't a cancer lesion.
After a while, you finally get so caught up in LIVING, that you don't have time to devote to the "what if's". You really do think less and less about it --- but you skip breakfast on the day of your yearly mammo--just in case you have to hurl. And when it's ok, you treat yourself to a Great lunch and some shopping.
But between mammos, you come here and visit, advise and question, laugh and listen, cry, and BE with women who know where you've been and where we all dream we are going. You LIVE, cause if you are not living, you are dying and who wants to Die for 30 years? Think of all that time you've wasted NOT living.
Blessings.
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I posted a blog update today regarding this topic: The Other Shoe...let me know what you think!
Iodine, thanks for your input!
Julie
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Hi Julie, and you are very welcome. The link did'nt work for me. Care to ck it out?
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Hi Iodine!
Here's the full link: http://side-out.org/blog/the-other-shoe/Julie
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