JoAnne Update 8

Kevin here.  I had an entire update post put together that only required proofreading.  Before I could get that accomplished, JoAnne informed me that her temp was north of 102 and it was time for a Sunday evening visit to the ER.  She is in good hands, comfortable and calm, and going to be admitted so they can stay ahead of any potential infections.  With that, let me take a step back and send off the original.

We hope the New Year is off to a good start for all our friends and family.  When we last left JoAnne before the holidays, she was doing pretty well.  The cough that had dogged her for many months had abated and the vertigo she developed secondary to a viral infection was improving. She was scheduled for a PETscan on December 27th to assess the effects of the chemo completed this past fall.

On the vertigo issue, it appears that this will be a permanent, although mostly manageable affliction.  JoAnne thought she had it licked and took our grandson Torben to the Mall of America. While in Nickleodeon Universe, she had an unsettling recurrence.  That led her back to a physical therapist who specializes in vertigo.  Previously unknown to JoAnne was the fact that an amusement park was the last place in the world she needed to visit. The virus she had damaged the vestibular nerve on her right side and affected its ability to transmit information from the eye to the brain.  If there is too much data, the system gets overloaded resulting in vertigo.  She can handle most things, but when she finds herself in a busy visual environment, the only solution is to just close her eyes and sit still.  All well and good unless you are driving. Interestingly, she can move her head up and down without symptoms, but  when she shakes it side to side, vertigo sets in.  There are visual exercises she can do to help and now with some idea of what is going on, there is usually a work around.

Perhaps the most distressing part of JoAnne's cancer over the last year has been a persistent and aggravating cough accompanied with asthma related respiratory issues.  It was encouraging when virtually all of that disappeared while she was recovering from the 3rd cycle of chemo in November.  It was short lived however, as those symptoms began to slowly return as the holidays approached.

On December 27th, JoAnne underwent a scheduled PETscan which visualizes the size of her lymph nodes and also measures their metabolic activity.  Small, quiet nodes are good; large and busy, not so good.  The fact that a CTscan after the first chemo cycle had shown some reduction in node size was cause for optimism.  Unfortunately a meeting with Dr. Wilkowske on the 29th revealed that the bulky nodes were back and their activity level had increased.  While there had been a response to the chemo, its effects were not lasting.

We now better understand that the respiratory and bronchial issues JoAnne struggles with are likely due to irritation related to bulky nodes in the chest and neck area.  As these nodes increase in size, they enter into conflict with respiratory and cough reflexes.  In retrospect, it makes sense that because the chemo had no lasting effect, the improvements that JoAnne experienced quickly disappeared once treatment was discontinued.

Dr. Wilkowske's recommendation was that chemo be immediately restarted for 2 cycles during which time he would set her up to see the CLL specialist at Mayo Clinic.  As there was no effective response to the last option that Dr. W had to offer, it is now time to explore more aggressive approaches.  Perhaps Mayo will have a clinical trial she can enroll in, or they can assess her for transplant eligibility.  Whether that could be bone marrow or stem cell is not clear right now.

Since JoAnne was diagnosed, we have understood that the approach was to manage but not cure the cancer.  A chemo agent would be used until it was no longer effective and then we would move on to the next option and use it.  That strategy has proven successful for 12+ years, but now the commercially available options have been exhausted.  In our heads we have always known this day would come, but in our hearts, it is still difficult to hear.

While it does not mean the end of hope and prayer, it does mean that things will likely get much tougher from here.  The risks have ratcheted up and some of the more aggressive approaches may be worth considering in hopes of prolonging her life.  We are fortunate to have Mayo within reach.  It is one of only 14 centers in the US that has a specialist in CLL.  We will meet again with George Call, MD, who we met with in 2000.  He helped develop the path JoAnne has followed, and he set us up with Dr. Wilkowske who had trained under him at Mayo. In the 10 years that JoAnne has been treated by Dr. W he has risen from one of many oncologists to chief of Park Nicollet's Frauenschuh Cancer Center.  If there is one thing we are sure of in this whole sojourn, it is that we have been blessed with extraordinary care.

Ironically, JoAnne went throught her chemo cycle beginning on January 4th and it has been very moderate in terms of side effects.  She repeats on the 25th and we will see where that leads. She is enjoying time with our new granddaughter which helps in adjusting to recent developments.

For now, we again find ourselves in the all too familiar place called uncertainty. The Brits employed a morale boosting campaign during  WWII that relied on the depicted mantra. Sound advice I am sure, although during these times of discontent, I find myself more easily drawn towards a carefully crafted and refined selection of expletives.  They usually provide a sense of relief when directed at hockey referees and wayward drivers, but don't seem quite sufficient here. I will just stick with what works.


Cancer sucks.