Tuesday, January 29, 2013

Roller Coaster

Click, click, click, click, click, click, click, click, click, click, click…

I once used the metaphor that living with cancer is like a roller coaster, up, down, up, down, spin spin spin, up, down, but I’ve never been on a roller coaster that has come off its tracks.  Wait a minute I was once, but fortunately a group of highly trained minimum wage carnies ran out and wiggled the train and shoved us along and into the station before we were rear-ended by the next train.  Hmm…  I obeyed the rules.  I kept my hands and feet in the car at all times. I kept my seat belt on and remained seated.  Why then didn’t the ride do as it was supposed to?

The ride up the first hill is full of apprehension and what if’s.  The decent down the other side is fast and furious and the ride blurs by.  Before you know it you’re back at the station adjusting your clothes, searching for your belongings, looking for a bathroom, and wondering what the heck just happened.  Sounds a lot like 2012, 2011, 2010, 2009,and 2008.

If you’ve been reading this blog you know that no news or sparse new is usually good news.  Unfortunately I don’t have much good news today.

I expect that anybody that has dealt with or is dealing with cancer knows too well how quickly the ups can turn down and the downs can turn up.  Yesterday I received the results of Lisa’s scans from last Wednesday and it seems we've just jumped the track.

Lisa’s previous set of scans were October 31.  Her January 23, set of scans last week indicate that the disease has progressed slightly in her head. New disease is evident on the T5 vertebrae in her spine, and a lot more disease is evident in the bone marrow biopsy that was recently taken.  All bad.  If it is possible to spin this in a good way I would like to think that when Lisa was experiencing her worst pain late in November, right around Thanksgiving you may recall,  that that is when the disease was more widely spread and since then her body has fought back.  After all it is since that time that she has been doing so well.  Even as recent as last week, this week and today, Lisa is up and getting ready for school and wanting to stay longer and with more vigor than I’ve seen her with in a long time.

I should also point out that, as I understand it, chemotherapy drugs have a limited effect on disease in the brain or in the nervous system.  Treating disease in the head or spine would normally be done with radiation therapy but Lisa has already received the maximum amount in her head and spine that she can stand without risking over radiating her so that isn’t a viable option at this point.

It’s confounding to say the least but today I am thankful that Lisa is comfortable, energetic, outwardly pain free and in spite of the scans, thriving in the moment.  Lisa’s oncologist can’t explain why she is outwardly doing so well since November.  It’s interesting that Lisa’s “good time” began after Bridget’s novena and intentions were made on Lisa’s behalf with the Soeurs de Saint-Joseph de Saint-Hyacinthe and a portion of Lisa’s blog was touched to the tomb of the Venerable Elizabeth Bergeron. Regardless of the reason, I am thankful.

The plan is to continue with the current regimen of chemo and palliative care.  We are waiting on the results of genetic tests that Lisa participated in in December and are considering any alternative treatments that she is eligible for.   Please send her your best my fellow carnies, let's get her back on track.


Tuesday, January 22, 2013

Scans Week

Sorry for so few posts.... Lisa has been doing very well.  When Mike took her for chemo 2 weeks ago, his interpretation of what the doctor told him after reviewing her blood draws was that "Lisa’s blood tests are the best they’ve been in a while and her bone marrow seems to be healing itself”.   The doctor attributes the success to the current low dose chemo treatment she is receiving.  Mike and I remained convinced it is something more.  If you recall, in the end of September when doctors had nothing else to offer and wanted to appease me,  they decided to put Lisa on this low dose of chemo.  The first 3 rounds of this regimen brought Lisa some relief but she spent much time sleeping.  Just after Thanksgiving, chemo Monday had me cringing and holding my breath as I watched nurses struggle to get Lisa into a wheelchair; her pain so tremendous she didn't want to move.  A mere two weeks later, after a novena had been offered by Bridget's mom and prayers offered to Venerable Elisabeth Bergeron, Lisa was doing, and continues to be, miraculously better.

She does not seem to be sleeping as much, and  her pain appears to be under control most of the time (or so we think).  At last chemo, as part of protocol, the nurses asked her on a scale of 1-10, what was her pain at?  Without missing a beat, Lisa answered "10 in both legs" and continued doing her craft project with great enthusiasm.  The nurses looked at each other and then questioned her "Lisa, how can you say you are at a 10?  Your bouncing around here and coloring".  Lisa stated in her all-knowing way "because I always have pain in my legs."   Wow.   I don't doubt her for a second. On her worst days, she can still sneak out a smile and a giggle from her napping position;  on her great days she still struggles to  walk and go up and down stairs but just keeps going. 

She is infectious....and I don't mean her cancer (which she clarified for me the other day..."you can't catch cancer, Mom, you can catch someone's cold; not cancer").  Her laugh, her spirit, her energy....it is amazing.  She so often lifts me to a level I didn't think I could go...those days when the alarm is calling and I've hit snooze 3 x's thinking the bed is a good place to spend the day only to instantaneously come awake when her exuberant "good morning momma" greets my ears....those days when I'm driving home from work counting the minutes until I can sink into the couch only to be greeted by her animated "momma, momma, momma....momma's home....yeah!!!" and suddenly I find myself in an upbeat discussion about what she did today and how she needs to show me something.  Her attention to her babies, her pride in her latest craft, her initiative to make her own flashcards, her ability to fall asleep in a mere minute....everything about her is so "in the moment".  Whatever she is doing, she is giving it her all.  She is the greatest example of live life fully:)

So, with her as my role model, I get up and face each day bravely with a smile and hoping for good but focusing on great.  Please send up a few prayers for Lisa that her scans are good and reveal no new growth ...or perhaps that they are great!  We continue to pray for the miracle of a cure, but are very happy that she is able to maintain her happy attitude and quality of life.

Keep praying and live life fully:)

Wednesday, January 2, 2013

Christmas / New Year's Eve

Lisa had a great Christmas.  She woke us all up at eight and we were knee deep in shredded paper by nine.  We had three new arrivals on Christmas morning.  CJ (Connor junior), Angus, and Emily are Lisa's new baby dolls and CJ already had a birthday party.  Baby dolls grow up so fast.  We spent the remainder of the day napping, watching movies, and munching on all sorts of goodies.
Lisa was a bit tired and her pain seemed to be back a bit on Christmas but after a 6 hour nap she appeared to perk up. On Wednesday she had her blood drawn at the UofM clinic in Canton. The test results indicated that no blood products were necessary which is always a good sign. 

Lisa's aunt Julie and cousins Mitchell and Alyssa arrived on December 28. They stayed with us through January 2.  With them was Alyssa's friend Dusty.  The kids went sledding, skating, to the movies, and spent time playing cards and games. We spent New Years Eve at the Superbowl bowling alley in Canton with friends and neighbors.  2012 had it's ups and downs but in hindsight we're happy with the outcome and look forward to the new year.

Today is Wednesday, January 2, and Lisa is scheduled for labs again today.  She's been sleeping a little more the past few days but other than that she looks good and doesn't complain pain.   Gaining weight seems to be a problem that we're beginning to look into.  I think the suspect is the pituitary gland or the thyroid as the culprit.  She's on the smallest amount of steroid possible to keep swelling under control in her brain so we don't think it's the steroid.  Her eating habits are better than most but she is primarily inactive and sleeping a lot.  We intend to consult an Endocrinologist this month to see what we can learn from them.

Thank you all for checking in and sending positive thoughts and energy.  I consider these good days and pray they will continue. We continue to live in the moment and love life.  All the best to you and yours this new year.