Thursday, December 30, 2010

Happy, Happy, Happy December 30, 2010


I'm sitting in my office at home writing to my family and friends, slightly more than one day before 2011 begins, and I don't think I've been happier or more relieved to see the new year arrive.  Last Wednesday, December 22, was my last radiation treatment and that little statement means that I am finished with what Jim so politely calls my "slash, poison and burn" treatment regime. 

I cannot tell you how good being "finished" feels!  There were times during these past eight months that the tunnel looked long and longer.  Each segment of this odyssey has had its own particularly nasty characteristics, which I'm sure were specially tailored to my own special personality and quirks. 

I used to be terrified of surgery and anesthesia - leftovers from an early and very different (medically) eye surgery as a child.  The anesthesia options are much better now and, of course, there are totally new philosophies and drugs for pain.  And yet, my fears at the time of surgery were around dealing with the post-op unknowns: How much pain?  What will the dressings be like?  You mean I have to deal with those drains?  For all of these questions, Jim was actually the answer.  He made sure I got the fluids I needed, emptied the drains until I could face them, made sure I walked and took medicine when I needed it.  After a total of three surgeries, we both had the routine down.  We began to take a "yah, yah, what's next?" approach...not really.

My initial knowledge and expectations of chemotherapy were all based on what I learned as a hospital-based oncology nurse...thirty plus years ago.  Believe it or not, we used some of the same drugs then - and I received two of them as part of my treatment course.  What I remember is, of course, the incredible nausea, diarrhea and misery that our patients experienced.  We would do our best with pain and anti-nausea meds, but they were so much less effective than they are today.  Women with breast cancer would bravely hold out their arms to have the IV placed - and then hold the emesis (throw-up) basin for hours as the chemo did its work. My hats (and I have quite a few now) go off to every woman and man who subscribed to and completed their courses of treatment during those days!  Talk about courage and will to live!

I believed the doctors and nurses who told me that my chemo treatments would be easier than in the old days - and they were.  I didn't actually vomit once!  I didn't have much diarrhea - and I think what I did experience may have been at least partly my fault (I got plenty of education about the likelihood of, I made sure I had plenty of laxative help to avoid it.  Live and learn, right?) 

There is, however, a big difference between not experiencing the expected vomiting of chemo and having a wonderful, no worries round of treatment.  There are lots of nuances to the phrase "easier than."  For me, the biggest issues became my lack of appetite and lack of energy.  It's easy to say, "just eat something," or "go for a walk," but it can be really hard to actually do those things.  Some of the medications that are given to offset nausea and vomiting actually made me sleep and sleep.  Then, when the heavy duty nausea meds and steroids (given before, during and a couple of days after treatment) wore off, I experienced a 'valley' of miserableness.  No energy, no appetite and/or slight nausea, aching muscles and joints - all of which lasted until a few days before the next treatment cycle.  You get the idea.  I would just start to feel better and it would be time for another treatment.

And, radiation.  The 'burn' portion of my treatment plan was just weird and hard because Jim and I were apart for six weeks.  We have developed ways of coping with business travel over our years together, but this was the longest time.  I was so lucky that Jim was able to come to Sacramento every weekend - it made each week have something good and important to look forward to, and made the time go more quickly.

My fears around radiation were mostly about what the unknown and very potent rays were doing inside my body - which, of course, was totally out of my control.  The machine is big and makes strange noises.  It was several treatments before I could open my eyes and actually look at it to figure out what some of the noises were about (mostly changing the lens shape to alter the field size and shape).  It took days longer before I even noticed the blinking red light warning others not to enter the room.  I understood right away the importance of being completely still once the set up was complete each day...even moving my feet had the potential to alter my position by a millimeter or two and that was not OK.  I managed the short time I was on the table with lots of focus on breathing (yoga teachings that paid off) and counting each treatment segment length.  It worked - helped me stay calm and cool.

Really, one of the reassuring things for me about radiation is that it has extremely rigid routines.  I went to the same treatment room everyday.  I had a small group of techs that took care of me.  The techs were precise and focused as they adjusted my position and aligned all of the measurements and table settings prior to treatment.  These things and more communicated competence and awareness of the importance of getting it right every time.

I feel pretty lucky that the radiation hasn't really added significantly to my lack of energy issues.  I still have good and not-so-good days, but I think they are as much a lingering effect of chemo as related to the radiation.  And, overall I am making gains day-by-day, week-by-week - yeah!  The only real issue I've had is about the skin damage the radiation causes.  The right side of my chest looks like someone put a big hot iron on my skin - not painful ever and getting better now.  I'm in the itching (don't scratch!), peeling stage, just like an intense sunburn.  This too shall pass - and, as I said, it's actually getting better every day!

So, I'm finished!  I'm having a bit of a hard time believing it.  Although I will have oncologist visits at intervals, there will not be much in the way of additional testing unless I come up with symptoms.  In general, breast cancer patients are treated as 'cancer free' unless something comes up that needs checking out.  I'm not sure when I'll stop looking over my shoulder, but I'm focused on being happy, happy to be done and on getting fully back on my feet.

BTW: I did have a CT scan of my chest and abdomen a few weeks ago (because of a cough that I can't quite shake - I think it's asthma).  The great news is that the CT showed nothing that looked like cancer - in fact, it was unchanged from the pre-chemo CT I had done.

So 2011 is almost here.  Jim and I have been so ready for this new year for months.  In addition to this whole breast cancer thing, the past year has been filled with the loss of friends, colleagues, and favorite pets.  We know that we're old enough to have people around us - and maybe even us - become sick or die.  But, we hadn't experienced - or expected to experience - such an onslaught in one year.  As a way of protecting ourselves from considering that this might be an on-going phenomenon, we have decided that it's all about 2010.  The new year will be washed clean and will have an entirely different, more positive flair.

This is our wish for all of you and yours - that your 2011 is filled with love, blessings, happiness, good health and exciting adventures! 

Oh...speaking of exciting adventures, we're going to England and Nice, France in June.  Cross your fingers for us that we get Wimbledon tickets!  Much love to you all!

Sunday, December 12, 2010

Radiation: A Primer December 12, 2010

Happy Holidays Everyone!

I've already had tech problems today.  Wrote a long blog to you all, was making some final adjustments and - boom - it was gone.  No actual sound, but all of a sudden it disappeared!  So frustrating, especially because the auto-save component of this blog immediately saved the empty page!  I can't recover the loss...ugh!

So, I'm going to do this again and maybe I'll get it better this time!  My plan is to do a walk through of a radiation treatment - with pictures.  Hopefully, you won't be too bored.  This routine is how my work-week days have gone for the since November 16 - for a total of 17 completed treatments.

I am scheduled for 8:30 a.m. every morning, which means my day starts before 7 a.m.  Many of you know how much of a morning person I am...not!  I decided to take an early 'slot' because I'd have the rest of my day free.  I'm glad it's this way - I can work, run errands, or nap if that's what seems right with the rest of the day.

When my trusty Camry gets me to the Radiation Oncology Center ((ROC)which is inside the Sutter Cancer Center), there is free valet parking.  A true convenience allowing me to race to my appointment at the last minute - a young person takes care of the car for me and I head into the Center.

The ROC is in the basement.  I used to fantasize that this location was because of the massive size of the equipment (oh, and to contain any errant radiation rays that wanted to fly around).  Turns out that the equipment is big - but not THAT big.  And, I'm certain that the walls, floors and ceilings are heavily lead lined to prevent errant rays flights - if there is any at all!

Must say that the folks running this Center have got the routines well organized.  I walk into the main lobby where non-patients and new patients wait, swipe my bar-coded card under a reader and watch to see my name come up on a computer.  When it does, I head to the private patient waiting room, choose a locker (#12 or #14, no odd numbers...bad), and change clothes.  For my treatment, I relinquish my street clothes (upper only) for one of the oh-so-lovely, open-down-the-back, thin hospital gowns.  You know them, I'm sure.

In the patient lobby area, there are usually four to six of us waiting for our names to be called for treatment.  Because we're scheduled for the same time periods every day, the group is usually the same folks - older adults, mostly men and one or two women.  I think that most of the women are there for breast cancer radiation and that most of us are treated in the same room, sequentially - thus, not so many women at a time in the waiting area.  Our little group has, over my time with them, begun to chat a little each day.  We talk about our non-cancer lives, about our treatments and work on being positive for each person.  It's a mini cheer squad!

There is a very old man who is accompanied by his step-son.  The older man has never said one word and his step-son is unable to speak.  He communicates with us via written messages and is quite outgoing.  He told me that his step-dad is a "pain in the ass!"  Hmm.  His step-dad has bandages on a small part of his face and I think that's where his radiation is directed.

Another member of our radiation cohort is getting chemo concurrently with radiation.  And, twice a week he gets two radiation treatments in one day!  Ugh and double ugh!  There are definitely roads that are much more difficult than mine.

When it's our turn to go to treatment - and usually less than a ten minute wait for me - our names are called over the intercom.  "Susan Strong please come back for your treatment."  Off I go.  Price of admission to the treatment room is my "name, rank and serial number" - my date of birth.  This is one of the safety mechanisms in place to prevent treating the wrong patient with the wrong radiation prescription.  You'd think that the techs would forget this as they get to know each person, but so far not one slip.  Every day, I get asked and they double check the computer to be sure I'm right.  Nice job.  I like a safety first approach.

The picture below is of the room and equipment.  Mr. Magoo is in the main item in the picture (to the right), along with the table and one of my techs, Michael. 

At the head of the table, near Mr. Magoo, is a molded form that was shaped to fit my head with my arms over my head.  When I get on the table, I put my head and arms into the mold and settle into its grooves.  The idea is to try to have me be in the same position every time I get a treatment.

Next in sequence is getting set up for treatment.  This involves aligning the three small tattoos on my chest, some green light strips and various felt pen marks that are applied daily into the exact position prescribed by my radiation oncologist.  The techs will adjust my body, millimeter-by-millimeter, until I'm exactly lined up in the mold and on the table.  I am not allowed to move at all once my arms and head are in the mold - I hold this position for fifteen minutes or more.  When my arms go numb and my shoulders begin to ache, it feels like I've been there for the entire day.  I know, whine, whine, whine. 

This is me, set up in the head/arm mold with Mr. Magoo ready to go for the first treatment segment.  You can see (maybe) a little gold glimmer on the right side of my chest.   This picture was taken on a "bolus" day - the gold metal fabric diffuses and scatters the radiation beam so it doesn't go as deep.  It's designed to be sure that my skin is treated adequately and this is done every other day.

While the set up is going on, the overhead lights are off.  When treatment starts, the overhead lights go on, a red light flashes and Mr. Magoo buzzes.  The treatment sequence goes something like this:

1.  Overhead lights on, techs leave the room.  Buzzing starts, red light flashes for about 6 seconds.
2.  Mr. Magoo stays put, but internal sounds (like a camera starting up) happen.  I've sneaked a peek at the face of Mr. Magoo as this has been happening and it looks like the lens is re-shaping it self to a new beam or treatment area.  Once this adjustment is finished, buzzing and red lights for 19 seconds.

BTW: I count each treatment period every time I'm on the table.  I use the old "one-one thousand" method, so it's probably not that accurate.  But each time I do it, the numbers come out pretty much the same.  Pretty obsessive, I know - a little known secret: I count lots of things and keep it to myself. Not sure why, but I  find the counting calming and reassuring when I'm being radiated.

3.  The overhead lights go off, a tech returns and Mr. Magoo moves over my body to the right side at an oblique angle.  The table is adjusted - the techs call it "kicked" - into position.  Overhead lights go on, the tech leaves and treatment begins.  Red light, buzzing - this time in a 6, 19 and 5 second array of three segments.

4. Overhead lights off, tech adjustments to the table and Mr. Magoo moves to hover directly over my chest and neck area.  I make sure I do not move a muscle - this treatment goes partly onto my neck and it seems a pretty good place to get the radiation location exactly right.  This is the longest direct treatment time - a total of about 30 seconds in two bursts; five and 25 seconds each.

That's it.  Except for the once a week x-rays that are taken for "quality assurance."  I get to take my arms out of the mold, sit up and most days return to the women's locker, change clothes again and am in my car before 9:00 a.m. 

Once a week, I see my radiation oncologist.  She primarily checks my skin to be sure that it isn't breaking down too much.  Actually, my skin has been pretty good - and I now know, on target for the changes that usually happen.  As of Wednesday last week, I have a "sunburn" type rash in various locations on the front and back of my chest.  I'm pretty sure it will get worse through the rest of the treatments - 8 left.  But, then I'll be done and the burn will heal.  In the meantime, aloe vera and hydrocortisone cream help.

All in all, I've adjusted to the routine pretty well.  And, I'm glad that it is a routine - there's very little day-to-day anxiety for me relative to what will happen during treatment.  "No surprises" is a good thing when we're talking about a big machine with super powers!  And, I will say that the ROC staff - from the front desk to the radiation techs, to the nurses and doctors - are all sensitive to the importance and enormity of the work that they are doing every day.  They smile, talk to their patients, answer questions, return phone calls promptly and generally stay on top of what's going on.  I appreciate every piece of the routine - and non-routine - things that they do.

I hope you are not being too crazy-stressed about the season and getting ready for the holidays.  My energy limits the amount of jumping in with both feet that I can do, so I'm feeling unready and calm about it at this point.  Some days, just getting into the car and dealing with the traffic is enough to wear me out...oh yeah, you all know about that too!  With our little rural town as our background for traffic, I'm not sure how you deal every day with the masses of people and metal on the roadways!  Incredible!

In doing the driving between Joy's house and Sacramento or Roseville, Jim and I have discovered what a flyway this area is for migrating birds.  We have spotted several new species - the most amazing of which (so far) is the American Swan.  These are huge, white birds with black beaks who migrate here from the Canadian tundra during the winter.  Their wings spans are in excess of five feet!  And, they are right by the road in big muddy ponds or puddles and in flooded rice paddies as we head to town.  Couldn't resist taking a picture or two, though I hope to get closer next time.

Have a wonderful week.  K.C. - keep getting better!  Love to all!

Saturday, December 4, 2010

Sadness Today - December 4, 2010

Hello Everyone,

Today I want to tell you about a friend and colleauge who died on November 27, 2010.  I found out yesterday that he was gone and I'm pretty much still in shock, thinking about him and wondering what we all wonder - why?

I met Randy several years ago in the context of our work.  He and I have both been working in the HIV world for many years - me full- and part-time for pretty much the last 20 plus years of my career.  Randy, however, had a different stake in his work...he was always working to make life better for people living with HIV because he was a person living with it.

He had passion for this work - and he was tireless in his efforts to deal with the stigma, the medical issues, governmental inaction, and other barriers in order to make change, to make things better for every infected person.  Long hours on the San Francisco HIV Health Council, founding the Coalition for National AIDS Strategy and so many other areas of important work - action and energy, even when he was physically and mentally drained.  Randy was smart - intellectually and politically.  He could get things done and he really cared.

We shared several areas in which our lives intersected.  Randy and Lee (his husband) have a beagle, Darwin.  Jim and I love our beagles - as you know.  I met Darwin a time or two and was most impressed with his manners, which our beagles are seriously lacking.  Randy did tell stories of very stubborn behavior which is so "beagle" - that made me feel some better.

I should also mention that - as fits his energy and penchant to action - he and Lee organized an annual Beaglefest.  Held on Angel Island, the event drew up to 200 beagles and owners!  We weren't ever able to attend but loved the idea and wished we could have taken Jazmin, Ranger and Scout too!

A couple of years ago I worked at the Open Door Community Health Center in Crescent City.  My job was to be a case manager for infectious diseases - which meant working with people living with HIV and those infected with Hepatitis C.   Coincidentally, Randy told me he'd been diagnosed with Hepatitis C - and, as with most folks, his diagnosis came years after the original infection, which had been silently damaging his liver over many, many years.  He was surprised at the diagnosis, but determined to go through treatment.  A brave man, I thought.  Hep C treatment (pills everyday and an injection of interferon weekly) is nasty hard.  It is chemotherapy, though not very many people call it that.  Side effects can be awful - nausea, weakness, fever, extreme fatigue and more.  In combination with HIV, treatment is tricky and even more difficult. 

After some time, Randy decided it just wasn't worth it - the side effects were too terrible.  I'm sure his decision was made with full knowledge of the potential future impacts on his health - he was an avid Internet (and other sources) information gatherer.   But Randy was so focused on living life to the fullest that I'm sure it was just too difficult to give up his days to the treatment regime. 

Then another and more awful coincidence:  I was diagnosed with breast cancer and Randy was diagnosed with anal cancer.  Over last summer, we became "cancer buddies."  Although our diagnoses and treatments were pretty different, chemo and radiation were shared experiences.  I was writing a blog and he wrote a blog.  We emailed and talked a few times on the phone.  We shared doctor and medical system stories - and talked about life with cancer.

And now, just a few months after his final diagnosis, Randy is gone.  I don't know what the final events were - I hope that whatever happened, he was in no pain and that he knew Lee and their love until his last breath.   I am so sorry and so angry that Randy is dead.  Such a smart, dedicated, loving man should not be lost to our world.

I'm happy to say that all is well in my treatment world.  And, Jim is here at Joy's this weekend - a very good thing!