I’m Not Dead Yet (I.N.D.Y.)

First, let me say that I really appreciate everyone who continues to read my blog and who voiced support for my ending chemo.  I have to say that I remain surprised at the number of people who read — thank you!  A special thank you to Annie Ruth, who has been one of my biggest, most vocal, supporters over these last 11 months.  She took the time to call and leave a cheer on our voicemail that brought a smile to my face during an otherwise kinda yucky, chemo-y day!  Thanks also to JoAnn, Paul, Jenn, and the myriad of parents at karate who continue to be so supportive.

I say this is day 0.5 because we are in Valdosta, GA (only 4 hours from Disney World), and the mood in the room is palpable.  All the kids are, to one degree or another, too excited to sleep (though, my daughter was the first to say she couldn’t sleep and is the first one to konk out).  I think she believes if she squints really hard she can see Cinderella’s Castle from our hotel room window.  I know I promised pictures, but we got here late at night and everyone pretty much got into their pajamas (which for many of our family, that means their underwear) and got into bed…needless to say, I didn’t think there was any reason to document that particular sight.  However, I thought I would show you what the t-shirt that MaryBeth designed for me looks like:

One more thing, today I received an Email from my House Representative, John Linder.  As I have mentioned, I am participating in the PANCAN 7 Week Challenge to increase awareness of pancreatic cancer and to encourage our leaders in Congress to support HR 745.  As part of the challenge, I have contacted Representative Linder 3 times (twice by Email and once by fax) to request that he support this legislation.  In his response to me he says…

I have continually supported increased funding of our nation’s public health agencies…[H]owever, higher funding levels for NIH and CDC-sponsored research should come within the context of a larger, fiscally-responsible budget.  Rather than make the budget deficit larger than it already is, the Congress and President should work together to reach agreement on reducing spending elsewhere in the budget, so that the overall budget remains on track to become balanced.  Under these kinds of circumstances, I could support providing the NIH and CDC with higher funding levels.

I understand his point, but I am going to be selfish and say that if not by adding to the deficit, perhaps Congress can funnel more of the proposed $6 billion President Obama has identified in the FY10 budget for cancer research toward research on pancreas cancer in particular.  Certainly, this would not be the first time funds were specified to support a particular program…or am I missing something.

Until tomorrow…

Merle

Tags: Main, Theology/Philosophy by Merle
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I am sad to write that Dr. Randy Pausch passed away today (July 25, 2008) due to complications to his pancreas cancer. As many of you know, Dr. Pausch’s battle with cancer has been a source of inspiration to me. I wish I had had the opportunity to meet or talk with Dr. Pausch; to have experienced first hand his zeal life.

Dr. Pausch, in many ways, beat the odds of this pernicious form of cancer. Most people diagnosed with pancreas cancer are not eligible for surgery; Dr. Pausch was able to get the Whipple procedure (something only 20% of patients with pancreas cancer are able to do). Unfortunately, they found out later that the cancer had metastisized. He continued to fight the disease, seeking out various chemo and radiation therapies (some of which were particularly toxic). In August of 2007, Dr. Pausch was given 3-6 months of “good health” left. In September, 2007, Dr. Pausch delivered his “Last Lecture.” In the end, Dr. Pausch defied the doctor’s predictions living almost 11 months.

I have already been contacted by friends who were concerned that I would be terribly upset by this news. While I am saddened by Dr. Pausch’s passing, it was not unexpected. I had chatted with friends who had noticed, as had I, that Dr. Pausch had not updated his blog in almost a month. I had, in fact, searched for news of his passing just last week.

I was reminded today of two very important facts: (a) The ending to Dr. Pausch’s battle is NOT (necessarily) predictive of my outcome; and (b) The odds of me beating this disease remain ‘0′ or ‘1′.

I can only hope that whatever news I get next Monday, I can live my life as fully as Dr. Pausch did these past 2 years. He did not hide from his illness, but used as a motivation to embrace his life and squeeze out every last moment of the time he had left. Rest in peace, Dr. Pausch.

Merle

Tags: Family, Main, Miscellaneous, Theology/Philosophy by Merle
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David Moose wrote in a comment that my friends would appreciate a list of things they could say (sort of the opposite of the list I provided last month of things NOT to say). Unfortunately, it is much harder to create a list of things TO say than what not to say. What is appropriate and helpful today may not be tomorrow. A lot depends on my mood, how I’m feeling, both physically and emotionally, and who is doing the talking; however, here is my best attempt to provide such a list.

1) Perhaps the best place to start is to talk to me about anything OTHER than my cancer. Talk to me about the weather, a job you have for me to do, an amusing anecdote about your friend / spouse / child / pet / etc. I have come to really appreciate when a conversation is not about me and my cancer, but about every day kinds of things.

2) Provide sympathy rather than pity. What’s the difference? I’m glad you asked. Merriam-Webster provides the following definition of sympathy: “The act or capacity of entering into or sharing the feelings or interests of another” Merriam-Webster defines pity as: “Sorrow for someone who is suffering, distressed, or unhappy.” However, according to Merriam-Webster’s online dictionary, sympathy implies a tender concern for someone’s distress, but can also imply a power to enter into another’s emotional experience. Pity, on the other hand, sometimes implies a slightly contemptuous sorrow for one in misery or distress. I understand that people have a hard time understanding what it’s like to find out you have cancer, but please do not feel sorry/pity for me. Instead, it’s okay just to say, “I wish you were not going through this.”

3) Tell me a joke. A friend of mine from Pennsylvania once vowed to tell me a joke every day. I appreciated the thought. I don’t need a joke everyday, but I do have an overly developed sense of humor and appreciate when someone shares their sense of humor with me.

4) “What can I do to help?” Offers of help are always appreciated. Moreover, as Lisa McLeod (a member of my church) told me, “There will be times that people will just do things for you; deal with it!” As I continue to move along this cancer journey, my family and I will need help with meals, with childcare, with odd jobs around the house. Feel free to ask what we need. The one thing I do ask is not to make an offer you are not willing or able to keep. I read a story from a cancer patient who said a friend had offered to give him a ride to an oncologists appointment, but on the day of the appointment, the friend called the patient to ask if he (the patient) could change his appointment (apparently the friend had a conflict through work).

5) The number one item on my list of things not to say, was to say was ‘Nothing.’ I’d rather have you say the wrong thing, than nothing at all. Thus, it’s okay to say, “I don’t know what to say, but I’m here for you.”

When it comes down to it, it’s not the words that matter as much as it is the act of reaching out and saying, either explicitly or implicitly, “I’m there for you. I care.” As Leroy Seiver’s said in an NPR piece several years ago: “Maybe it’s just the act of trying to reach across that dividing line that seems so huge to all of us on both sides, maybe that’s what’s really important.”

Merle

Tags: Main, Merle, Theology/Philosophy by Merle
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Lynn, my step-sister who lives in Israel, left a comment that made me think a bit. Lynn expressed her surprise at the different facets of my ‘Merle-ness’ of which she was previously unaware. As I try to do as often as possible, I responded to her via Email, but as I was writing the response, I thought of a topic about which to blog.

In my Email, I said to Lynn that when I ponder the existence of a higher power, the analytical side of me asks: “Where’s the evidence? Show me the data!” Further, I said to Lynn (as I have to other people) that such a response is in direct opposition to the concept of faith. But as I wrote the Email, I remembered one of my favorite stories (which goes in the face of my analytical side) and I would like to share it with you:

A minister was living in a St. Louis suburb that had recently been inundated with a lot of rain. In fact, his town was flooded. At first, the water was only to his waist and a person came by in a boat. The person called out to the minister, “Preacher! Jump into the boat and I will take you to safety!” The minister smiled and shook his head saying, “Thank you my son, but I have faith in the Lord. He will save me. Go help someone else.” Not wanting to argue with the minister, the man moves on.

And the water rises…

The water rose so much that the minister had to climb on top of his house to avoid it. Another man comes by in another boat and says, “Preacher, climb into the boat and I will carry you to safety.” The minister again shook his head and says, “I have faith in the Lord. My God will save me! You go help others!” The man shook his head, but relented to the minister’s request.

And the water rises…

Eventually the minister has to stand on his tippy toes in order to continue breathing and a helicopter with a ladder dangling from it comes to his rescue. Over the PA system, the pilot called to the minister, “Grab onto the ladder and I will fly you to safety!” The minister shouted back, “My God will save me. Help those who are in greater need!” As he was running low on fuel, the pilot decided not to argue with the minister and goes onto the next house.

And the water rises…and the minister drowns.

The minister gets to Heaven and goes before God and says, “Holy Father! I have been your faithful servant for more than 20 years. Why, in my time of need, did you not help me?”

God looked at the minister and said, “I sent 2 boats and a helicopter! What more did you want??”

I love that story. It still makes me chuckle even after telling it so many times. It also helps me to remember that, for me, the divine is not necessarily some entity sitting in judgment and/or taking a personal interest in me and my life. Instead, the divine is all around me — I just have to stop and look at it. I truly believe we can find the divine in nature; in the beauty of clear, sunny day; in the love of a child or a friend or a sibling or a spouse. Today, I “worshipped” the divine as I worked in my back yard with my brother, Sid, and my very good friend, Luis. I basked in the divine as we all, Luis’s family and my own, sat around a dinner table and enjoyed each others company. I saw the divine in my daughter’s eyes when she saw the swing set my brother and I completed today (and when I said that she could have a brownie for dessert)! Sometimes, even us analytical folk need to stop and appreciate the beauty and the divine that we see everyday.

I hope that you had the opportunity to experience the divine today, as well!

Enlightenedly yours,

Merle

Tags: Family, Merle, Theology/Philosophy by Merle
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Early in my diagnosis, I remember sitting in the oncologists’ waiting area and I picked up a magazine that had an interview with a karate instructor who also had colon cancer. She described a variety of different activities she felt were helpful to her. In particular, she had said it was helpful to imagine that the her white blood cells were like PacMan, going around and gobbling up all the cancer cells. After a while, the karate instructor imagined her white blood cells were little karate guys “kicking cancer’s butt!” A couple of days earlier, I had someone else suggest that I should envision little PacMen going around my body and eating the cancer cells and all I could think is, “Do people really do that?”

I have been called many things in my life, but chief among them has been analytical (as in, “You are too analytical to believe in _____” or “You’re so damned analytical!” or simply, “You are SUCH a scientist!”). Apparently visualization works for many people, but I think, as with many of these kinds of ‘treatments,’ it is necessary for the person doing the visualization to believe in it; I don’t believe, so I do not think I’m a good candidate for it. I guess I’ll have to put my faith in the slash, burn, and poison methods of cancer treatment (in medical parlance that would be surgery, radiation, and chemotherapy).

Health update time: After a rough first couple of days, this week, the last couple of days have been pretty easy going. As I said previously, I felt much better on Wednesday after sleeping upwards of 12 hours on Tuesday. Today, I was very tired around 3p and ended up sleeping (hard) for a couple of hours. I did get the report of my labs this week. For those keeping score at home, my platelet count this week was 105 (with a normal range of 150-400). Last week, it was also low at 110, and I didn’t hear anything about it. My lymphocyte level was 5% (normal range 15-43) and my monocyte level was 16% (normal range 5-12). My doctors said my bloodwork looks okay, so these abnormal levels apparently are not enough to raise concern. I will follow-up with my oncologist (or my personal medical authority — my big Sister — who is a muckity-muck (a very technical medical term) nurse at CHOP).

Other than that, I am very much looking forward (as I believe I mentioned yesterday) to my brother and his son visiting tomorrow. My kids are looking forward to having their cousin visit and actually spent some time at the dinner table discussing (just short of arguing) about with whom their cousin will sleep. I think we’ll just put all three of the boys in one room and let them work it out.

Until next time…

Merle

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Tags: Merle, Score Box, Theology/Philosophy by Merle
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