Be still

Tomorrow afternoon at 2:00 p.m., I begin my radiation treatment, and it won’t come soon enough.  I am feeling very impatient.  I’m ready to get this thing done!

While I was at my appointment with the radiation oncologist last week, her staff was able to do my simulation CT to prepare me for treatment.  I was placed on a table with something like a blow-up mattress underneath me.  They filled up the mattress, and it inflated around me, holding me in a fixed position so the technician could get accurate pictures of exactly where my tumor is so that the radiation will be guided to the perfect spot for all ten treatments.  I could wiggle, if I wanted to...but only just a little.  However, I held absolutely still, probably holding my breath even though I didn’t need to.

After the imaging and before deflating the mattress and releasing me from my fixed spot, the technician marked four plus signs on my lower abdomen, aids to place me into the exact same position when I actually receive treatment.  In years past, they would ink permanent tattoos to mark those spots.  I’m glad a Sharpie and some surgical tape do the trick now.

Today my thoughts are racing: my health, my husband, my boys, my outcome.  But I have to just pause and tell myself, “be still”.  The time will come.  Ten days of treatment will pass very quickly, and then I’ll do whatever the next stage will be.  Just be still.

Don’t take no for an answer

First of all, I want to thank all of you who have reached out to me since by last entry.  I don’t blog to get feedback.  I blog to find release.  But, it’s a wonderful fringe benefit to hear from everyone.

Some of you have asked about the specific dates of my upcoming treatment, and I want to answer that question.  I start radiation on Wednesday, September 5th and finish up on Tuesday, September 18th.  My radiation oncologist wants to review my treatment records from six years ago when I had a broader spectrum pelvic radiation, just after I was diagnosed the first time.  If she sees that the current tumor is located outside the field of the first bout of radiation, then she’ll consider the one-time ratiation treatment that must be done in an operating room.  I don’t know the time table for that.  Additionally, I mentioned starting Tamoxifen.  That won’t happen until, at least, the next appointment I have with my gynecological oncologist in a few weeks, and I don’t know how long I might be on it. Most people have heard of Tamoxifen in relation to breast cancer, but it can be used in GYN cancers too, if, like mine, they are hormone-receptor positive.

I also wanted to mention that I knew something was wrong at least six weeks ago when I started having unexplained vaginal bleeding.  Since I’m post-menopausal and have no uterus or ovaries anymore, I knew this was not normal.  After a week or so of this bleeding, I knew I needed to call my gynecological oncologist to get it check out.  And, this is the important part, so sit up and take notice:  I was told by the scheduler that I couldn’t see my doctor until six weeks later.  I even explained that I was a stage IV endometrial cancer survivor with vaginal bleeding, but she told me, with a very snippy attitude, that I would just have to wait!

No, no, I thought.  That just won’t do.  So, I called back and asked to speak to the doctor’s medical assistant.  I had to leave a message, but she called me back within the hour, set me up for a PET scan in two days, and I was in the doctor’s office within a week after the PET.  That’s when she found the tumor and took a biopsy.  It took a week to get the results back, but she called me herself to give me the news.  In two days, I was in the radiation oncologist’s office making a treatment plan; that was two days ago.  And, now I’m scheduled to begin radiation treatment on Wednesday.  All this before I would have gotten in to see the gynecological oncologist the if I’d taken NO for an answer from her scheduler.

The message I want to leave with all of you is take charge of your health care.  Don’t let a bureaucratic policy dictate how you’re cared for.  Insist on what you need, no matter what.  Don’t let your questions go unanswered.  And, for goodness sake, do your own research, educate yourself, and keep records of every test, treatment, and office note.

I don’t wish my situation on anybody, but if you find yourself in anything like my shoes, dictate the care you deserve, because you deserve it.  Doing so might just save your life.

A bump in the road

There’s no easy, eloquent way to put this.  My cancer has recurred.  It does seem small and localized, and, most importantly, treatable.

Yes, I just reported a clear PET scan, so my announcement may seem odd.  But, it wasn’t until my gynecological oncologist examined me last week that she found a very small tumor in my vaginal opening, just below the urethra, flying under the radar of the PET scan.  Sorry for the indelicate language, but that’s just how it is with gyn cancers.

Next week, I begin a 10-day course of radiation treatment, highly focused just on the spot where the tumor is.  After that, I might have one other radiation treatment that must be done in the OR, with me under sedation.  Additionally, I’ll probably start a course of Tamoxifen, an oral cancer drug that will hopefully mop up any additional little cancer cells that might be roaming around out there.

I’m over five years into remission, and I can’t believe I’m here again fighting the cancer monster.  Yes, I’m concerned, and sometimes at night after everyone’s gone to bed and I’m alone with my thoughts, I feel a little lost.  Mostly, however, I’m just pissed to have to take on this battle again.  Or, maybe it’s more of a skirmish compared with last time.  Either way, it’s not the way I want to be spending my time.

But, there’s no option but to move forward.  So here I move, over this bump in the road.

A great way to start the school year

I just received my ninth clear PET scan report since completing chemo, nearly six years ago.  Whew!  I had a little bit of a scare and had several days of nervous waiting, but I’m all clear!

In those few days I let my thoughts go to some dark places.  What if my sons have to spend their senior year with their mother going through chemo again?  How many of those “last” moments would I have to miss while recovering in my well worn recliner, as the rest of the world continued to spin around me?  How much would my husband, Paul, have to pick up the slack while he also focused his attention on his job?

What a gift to spend the first week of school getting good news about my health!  I’m prepared for all those footballs games, fencing tournaments, Eagle Scout projects, college applications, and just plain simple dinners around the table together.  (I just wish those senior pictures turned out better.)

Bring on senior year!  I’m ready!

Vote today, because you can

On election day, four years ago, I had my first chemo treatment.  We left the house too early to stop by the polls and returned too late.  It was the first time I'd ever missed a chance to cast my vote in an election.  I guess chemotherapy is a reasonable excuse.

But, today I vote, because I can.

The good news just keeps on coming

Three and a half years ago, a skilled cardiothoracic surgeon performed a thoracotomy and separated two of my ribs to look for remaining signs of metastatic endometrial cancer.  He found one last cancerous node and removed it.  I've had PET scans every six month since then to check on my status.

I just got word that my latest PET scan is, once again, clear of any return of cancer.  I continue to beat the odds.  I was diagnosed with stage IV endometrial adenocarcinoma in May of 2012.  A round of radiation and chemotherapy, along with two surgeries, and I remain cancer free.

A few weeks ago, I started a yoga class with my friend Lisa, and I've noticed, for the first time, I don't have to fight to forget my cancer while in class.  I'm totally in the moment and free of worrying thoughts about cancer regrowth, PET scans, doctors' appointments, and the things in my life that I might miss if my prognosis turned downward.  What freedom!

No, I'm not out of the woods yet, but with each additional clear scan, I get closer and closer to putting this stage of my life further in the back of my mind and concentrate instead on my family and my friends.  It's nice to focus on things like vacation planning, college searches, and holiday get-togethers and not on the microscopic growth of those little nasty cancer cells.

Thanks to all of you who have made this journey with me.  I couldn't have done it without you.

It's a wonderful life

Nearly four years ago, I received my diagnosis of metastatic uterine cancer.  I was terrified.  Terrified for myself.  Terrified for my husband and terrified for my children.

Of course, I took to the Internet to research my disease.  Dismal.  Twelve percent five-year survival rate.   Two surgeries, radiation, chemo, numerous PET scans, and many sleepless nights later, I'm still here.  And, I'm not just here.  I'm living my life, with the power of cancer fading more and more every day.

Through this blog, I've received over 35,000 views and have followers from afar away as Australia and South Africa.  I've been encouraged and supported by people I know and love and by people I don't even know.  Though I'm writing less and less, this blog is perhaps one of the best things I've ever done for myself.  I've felt free to share my triumphs and my challenges, my fears and my happiness.

Yesterday, was one of those happy days.  I got a report of yet another clear PET scan.  The area in my lung the oncologist was watching after the previous PET scan is now off the radar screen.  Just a pesky looking bit of tissue, but it's not cancer.

I'm not out of the woods yet.  I may never totally be.  But, I'm learning life with a cancer diagnosis is doable.  It can even be wonderful.