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Friday, February 19, 2016

Cancer Sucks - Part 2

In my previous post with this title, I was worried about Pat Killingsworth, who tragically passed away last week.  I feel like I have lost a real friend, though we have never met.  However, I also had another reason to worry that is closer to home.  My sister-in-law, Kathy, has just been diagnosed with lung cancer!  By the way, she doesn't smoke and she is only 56 years old.  Our whole family is stunned.

Kathy had no symptoms, but she recently noticed an enlarged lymph node on her neck.  A biopsy then showed it to be adenocarcinoma.  A PET scan then showed several other cancerous lymph nodes near her lungs and a possible lesion in her lungs, so it was diagnosed as a Stage 4 lung cancer!  Furthermore, a follow-up MRI showed that it has metastasized to her brain.  Yikes!

Since I have been through this drill for myself, I have been helping her with online research and trying to help find her the best care possible.  Gretchen and I have been supporting her by attending her appointments.  Fortunately, with the help of other close friends, we have been able to direct her to one of the best lung cancer oncologists in the country,  Dr. Jennifer Temel, the Clinical Director of Thoracic Oncology at Massachusetts General Hospital (MGH) in Boston.  She is now Kathy's oncologist.  MGH, along with the Farber, is one of the best cancer treatment centers in the world.  I think finding Dr. Temel at MGH is similar to my finding Dr. Richardson at the Farber.  She couldn't have found anybody better.  Starting next week, she will begin whole-brain radiation therapy for about 3 weeks, to be followed by chemotherapy.  Kathy is a real trouper, and she has been handling this extremely well with strength and optimism, which will help her greatly as she and her family and friends face the long road ahead.  Cancer sucks!

Another friend of ours, a cancer survivor, has recently been experiencing very low white blood cell counts.  She just had a bone marrow biopsy to determine if she has myelodisplastic syndrome (MDS).  If so, it could have been caused by her previous radiation and chemotherapy treatments.  We are awaiting these biopsy results, which should be available in another week.  Cancer sucks!

My daughter-in-law, Pam, phoned me two nights ago about a friend of her close friend in Holland who was just diagnosed with lung cancer.  He wants to come to the U.S. for treatment, and she wanted my inputs.  I am waiting to hear from him with more details, but I might be able to help set up appointments for him either at MGH or Dana Farber.  Cancer sucks!

On a much less dramatic note, I had an appointment with my dermatologist yesterday, and quite a few anomalies showed up.  She used liquid nitrogen spray to treat fifteen (!) pre-cancerous actinic keratoses on my scalp, face, and torso.  She also took two biopsies of sites on my face which she suspects are either basal cell carcinoma or squamous cell carcinoma.  I will get the results in a week or so, but I'm pretty sure I'm headed for more surgery.  All of this has occurred since my last visit 6 months ago, after which I had surgery to remove a squamous cell carcinoma from my forehead.  That's a lot of shit to happen in only 6 months!  After the biopsies, she suggested I make an appointment to come back in a year.  (!!!)  What the f**k!  I told her she had to be kidding me.  She looked shocked and asked if I wanted to come back sooner.  "Damn right I do", I responded, so she then scheduled an appointment for me to come back in 4 months.  I won't keep that appointment, however, since I plan to have a new dermatologist by then!  This is another example of how you have to take charge of your own health care.  Cancer sucks!

Tomorrow, I am headed to Ocean Isle Beach, N.C. for a week of golfing with my son, Jeff, my friend, Bobby, and about a dozen other old farts like me, all of whom are from the Pittsburgh area.  (Maybe I should leave my Patriots cap at home.)  After all the stuff going on around here, I think I need a break, although thoughts of Kathy won't be far from my mind.  I'll just hit the shit out of that little round ball and not care much about where it goes.

Oh yeah, and I think I will take some sunscreen along.

By the way, cancer sucks!

Thursday, February 11, 2016

A Sad Day

Sadly, Pat Killingsworth died today on his 60th birthday.  His frail body could no longer sustain the ravages of the various complications he has recently faced in his myeloma fight.  His passing is a tragic loss for his wife, Pattie, his family, and for the many hundreds of us myeloma survivors who relied on his daily blogs to sustain us, inform us, encourage us, inspire us, and entertain us as we dealt with this insidious disease.  His death leaves a tremendous void in all of our our lives.

Pat's blog has been a constant and comforting companion to me ever since my diagnosis with MM in 2011.  He has been an invaluable resource in my research over the years.  I relied on his experience with his stem cell transplant to help inform my own decision.  I read his book on the subject, and we spoke on the phone several times along the way, which was very helpful.  He invited me to document the decision process I used leading to my stem cell transplant, which he then published on his blog.

If you read the comments to his last post, ,
you will understand how much Pat has meant to those of us in the myeloma community and how much he will be missed.

I have always wanted to meet Pat face-to-face.  For the last two years, he has hosted a "Pat's Beach Party" near his home in Amelia Beach, Florida, to gather myeloma patients from around the country to share stories and get to know each other.  I've wanted to go, but unfortunately we couldn't attend either year due to previous conflicts.  This year, however, we have made plans to attend the event on April 1-3, and I was excited about the opportunity to finally meet this incredible person.  I'm devastated that he is no longer with us.  I'm not sure what will happen with this year's event, but I suspect it will still be held as a memorial to his life and works.  If so, we'll be there to honor Pat's memory and to share our grief at his passing.

Pat would always end his posts with this message,  "Feel good and keep smiling!".  Right now, I don't feel so good, and I'm finding it kind of hard to smile.

Tuesday, February 9, 2016

Cancer Sucks

Despite the title of this blog entry, Gretchen and I had a good visit with Dr. Richardson on Monday.  Fortunately, my primary numbers are still good as I start my maintenance Cycle 44.  I did notice, as I have in previous visits, that my bilirubin number is high.  Normally, it should be <1.2, but mine was up to 1.8!  Some of my previous visits also showed high bilirubin numbers.

Since bilirubin is associated with the liver, I have been concerned that I might have some liver malfunction.  Considering the amount of alcohol I have imbibed over the years, I'm surprised it works at all!  Previously, when this number was high, Mary has told me that it is no problem because all my other liver functions are normal.  But when I brought this up to Paul on Monday, he casually said "Don't worry, you have Gilbert's Disease", as if I should have known this all along.  Oh really?  What's that?   All I need is another disease, right?  Anyway, he said it is no problem.

So I did a little research.  It turns out that it is a benign disorder of elevated bilirubin which has no serious consequences.  I found that those who have this Gilbert's Syndrome may suffer from mild jaundice.  So if I look a little yellow to you, now you know why (I'm not saying that I'm a chicken).  I also learned that this condition is associated with a much lower risk of Coronary Artery Disease.  Well that's comforting.  Maybe this is good news after all.  Not to worry, right?

As for the MMRF Boston 5K Run/Walk event, Pam's Team Epic for Bill has started out well.  I'm gratified that there have been some very generous donors.  I thank all of you who have contributed so far!  We have raised almost $2,500 to date, but we still have a long way to go to get to our fundraising goal of $10,000.  I think it would be awesome to raise that much money to fund MM research.  Those of us with MM depend on continued research to find the medicines that will either control or hopefully cure our disease.  I would appreciate it if you would contribute and reach out to others who might be interested in contributing to this cause and/or joining us in this event.  Thank you in advance!

I have started going back to the gym to train for this event.  Right now I am beginning interval training combining walking with running to see if I might be able to actually run rather than walk in this event.  I've been wearing a knee support to see if that helps.  I'm just starting, so I don't know where this might go, but I think it would be really great if I could actually run for 3K if my knees hold out.  If not, I will at least walk or crawl, but I'm determined to do it.

I'm really concerned about my favorite bloggist, Pat Killingsworth.  He has been a constant source of inspiration to me and many other MM patients over the past years.  He has suffered myriad setbacks along the way, but he manages to blog on a daily basis no matter how badly he feels.  We are planning to visit him in the beginning of April for his annual Pat's Beach Party in Amelia Beach, Florida.  I'm really looking forward to meeting him face-to-face for the first time. 

In the last few days, however, he has had some serious setbacks and has been in the emergency room for complications from his dual tandem stem cell transplants a few months ago.  All of us faithful followers are holding our breaths hoping that he makes it through this difficult stage.  Here is a link to his blog:  Here's to you, Pat!

Pat is one of the reasons that I titled this blog "Cancer Sucks".  There is more, but I will save that for a later blog.