Happy New Year!

There are two ways of spreading light — to be the candle or the mirror that reflects it.

— Edith Wharton 

New Years Greetings to All!

I rang in the new year by going to sleep about 10:30 on New Year’s Eve.  Just didn’t have it in me to stay up for the festivities.  That’s okay.  I’m glad the new year has arrived, so far with good news.  I had my check up with my oncologist on Friday, and my physical exam was good.  I’m scheduled for my next PET/CT scan in late March, with a follow up appointment with my oncologist two weeks afterward.

Though perhaps the best news is I’ve begun volunteering with a local food pantry, two days a week, for a four-hour shift each day.  I’ve been set to the task of answering the incoming phone calls for the organization, which is much more than it sounds like it might be.  I’m the front line of contact with people who are in dire straits.  They’ve probably been considering making their phone call for days, desperate in some area of their lives and needing help.  I’m there to listen to them, offer them some comfort, and hopefully find a way to help them out.

The organization does much more than just feed the stomach.  They have utilities and prescription medication assistance, as well as a job board, homework help, and various activities for their clients through out the year.  My first volunteer job was taking pictures of the clients with Santa at the pantry’s annual Christmas party.  I went to Walmart to find the most ridiculously decorated sweater I could find, wore my knee-length Santa hat, and dusted off my old Canon SLR camera for some good shots.  The kids had crafts projects to do, cookies and milk, and each received a stocking with small toys and other treats.  It was a wonderful evening.

I go in today for the tougher work, answering those phones.  I’m still on a learning curve.  I want to connect up potential clients with the correct services we offer, but I also want to be a resource of other services in the community that we don’t offer...like help with rent or house payments or clothing sources.  I’ve spent hours on the Internet educating myself about similar organizations in the community that offer compatible services.  I want every caller who makes that difficult phone call to hang up with some sort of resources, some sort of hope.

The magical thing about volunteering with this organization is the energy I receive back from my work.  Four hours is a long shift for me, but every time I leave with a sense of purpose and gratitude for what I have and what I have to give.  This is probably the best cure for my moodiness and fatigue I get from the post-chemo drug I’m taking, Arimidex.  I feel very fortunate.

So, my new year begins on a very positive note.  I wish the same for all of you dear readers.

Kayaking without the dolphins

The weather was perfect last evening. Broad Creek was at near low tide, and the wind was only a whisper.  It should have been the ideal time for kayaking with the dolphins, but other than one faint unseen spurt from a blow hole just as we were coming back into dock after a two-hour paddle to experience what became the illusive sea creature, there were no dolphins to be seen.  “Eighty per cent of the time, we see dolphins,” boasted our guide.

Oh well.  It was still a great paddle under ideal circumstances, and I’m most proud of the fact that my kayaking skills remain intact...not that I’m a veteran, by any stretch of the imagination...but I do enjoy getting out on occasion.  The ease of the paddle rotating through the water when you get your rhythm just right.  The silence of it all, except for the swish-swish of paddle to water.  I kept up, mostly in the front of our tour group, and was determined that this chemo woman, this cancer patient, was not going to tire out and hold the group back...and I didn’t, and it was glorious.

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.