What to do or say…

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 anotherMerriam-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

Of brothers and men…

Today was a busy run around town kinda day. It started with my younger son making omlettes for his uncle, himself, and me at 9a. Actually, it started 2.5 hours earlier when I could not sleep any more — kinda sucks when your body is so used to getting up at 6:30a that even on the weekends it ‘wakes up’ at 6:30a and going back to sleep just doesn’t work (actually, 6:30a is sleeping in for me; before I started in treatment, I would get up at 5:30a so I could work out at least 3 days a week — unfortunately, when I’m ‘plugged in’ it’s best if I don’t sweat and get my bandages all wet, so I really have to limit my exercising).

This week is scout summer camp for my boys’ troop at Camp Rainey Mountain. My younger son’s best friend is also in the same troop and his father and my very good friend, Luis, and I drove my sons, his son, and one other boy from the troop up to Rainey Mountain today. It’s only about 2 hours, but that means 4+ hours in the car today. I have said it before and I’ll continue to say it: I am very lucky to have Luis as my friend; he showed me how much fun scouting can be and has become invaluable in my life. Thus, a large portion of my day today was spent driving. <sigh>

But above all, today, in particular and this weekend, in general, was great because my brother, Sid, and his son have been visiting. In fact, they were supposed to leave earlier this morning, but late last night my brother decided to spend another day here. I love my job at the CDC, but I have to say that the challenge is being so far away from my family / siblings. I love all of my sibs, but I seem to have a stronger bond with Sid, due in part to the fact that we have the same kind of warped sense of humor.

It has been great having Sid here. He was invaluable in completing the swing set (I’ll have pictures in the next day or so). More than that, though, it has been really helpful just having him here. We have always had a healthy sibling…rivalry is not quite the right word, but we have had a fair share of competition. I have always wanted to be like my big brother Sid. When he had an afro, I grew and afro (somewhere there is a picture, but I was unable to find it for this posting; I’m sure if it becomes available, I’ll rush to post it: it was a high point in my fashion evolution). He was a drummer in high school, so I became a drummer in high school.

I have always looked up to my big brother (even when I got taller than him). I look at his life and only see him as someone who is successful in his business (he’s a high muckity-muck in charge of, among other things, E-commerce for Children’s Place department stores). He lives in a beautiful house with three great kids and a loving wife. I wish I was more like him. I don’t know if Sid will ever appreciate how much he has meant to me over the years and how much his love and support has meant to me more recently, but I think he wouldn’t change even if he DID know. Thank you, Sid, for your love, your friendship, your help!

Until tomorrow…

Merle

Looking for data…

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

Responding to comments…

For those of you who don’t know, in the “Hitchhiker’s Guide to the Galaxy Triology” a super computer was constructed to answer the question: “What is the meaning of life, the universe, and everything?” As it turns out, the answer was 42. Which, as Aunt Catherine (MaryBeth’s sister) pointed out is also my birthday. I am not sure I agree that I am part of the answer to life, the universe, and everything…but who am I to argue with such reasoned logic??

Rhonda asked, in response to my post about the levels of various biomarkers, about my CA19-9 (carbohydrate antigen 19-9) levels. The CA19-9 test is a blood test from the tumor marker category. Unfortunately for me, the CA19-9 is not a very good measure for identifying pancreas cancer because those of us with this type of cancer have a deficiency of fucosyltransferase that is needed to produce CA19-9. With all that as background, through the 8+ months leading up to my cancer diagnosis my CA19-9 levels were in generally in the 40s (normal levels are 37 and lower). Rhonda, in answer to your question, the oncologist only ran the CA19-9 once since he’s seen me; when he ran it, my level was 58. (One does not get terribly upset until this biomarker is 200+ or more.)

As Cathy mentioned, a friend had ordered me an “I’m Not Dead Yet!” t-shirt from Zazzle. Here is a link to the Zazzle page with that t-shirt. I am partial to the ‘Ringer T-shirt’ (the one with the colored neckline and sleeve bands). While not necessary, please feel free to order your own today. Who knows, perhaps they’ll be worth something some day!

I know I have said this before, but I wanted to again say how lucky I feel to have so many people pulling for and supporting me. Whether it’s just reading my blog and leaving positive thoughts / comments or doing something else, I really want you to know how meaningful your love and caring are to me. From the bottom of my heart, thank you!

Last thing, MaryBeth and I spent some time with an LCSW on Monday to discuss how my cancer is affecting our relationship, as well as the impact it has on our kids and our relationships with the kids. Jean, the LCSW, sent us a flyer yesterday for a program I wanted to let you all know about. The Jack and Jill Foundation for Late Stage Cancer is dedicated to provide memorable experiences for families with young children whose parents have late stage cancer. The foundation is based here in Atlanta and I have volunteered to provide photographic services for families on these WOW experiences. I think this is a great organization and I encourage you all to do what you can. I am not currently eligible for the foundation’s services, so in the meantime, I’ll provide those who are with whatever support I am able.

Until next time…

Merle

Visualization….

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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Scout Disappointment…

First, let me say that I am feeling SOOOO much better today than I did on Monday or Tuesday of this week. It’s amazing what 12 hours of sleep helps one’s physical and mental status. Today, I worked a full day at the office and am still kicking around 10:30p (okay! Okay! I’m going to go to bed after this post!)

As I have mentioned previously in this blog, I have been pretty involved with the scouting program. I began as a leader when my oldest son was a “Wolf;” I continued to be his leader through “Bears” and “Webelos I.” At that point, my younger son requested that I be HIS leader, so I continued as my younger son’s “Webelos I” and “Webelos II” leader. (The Webelos rank spans both 4th and 5th grades.) Now that my boys have crossed over to Boy Scout Troop 549, I have looked forward to being an adult leader in the troop as well.

Unfortunately, my ability to serve as an adult leader has been somewhat hampered by my cancer diagnosis. Specifically, I had hoped to participate as an adult leader on outings the troop took, such as the recent 20 mile hiking trip, the fun water weekend, and the upcoming scout summer camp. Unfortunately, my oncologist suggested that trying to go on a 20 miles hike was not the brightest idea given my current health issues. I had to skip the water weekend, as I had to stay home to complete treatment for the week. This coming Sunday, my boys are heading up to Camp Rainey Mountain for a week of BSA summer camp. Right now, I’m hoping to make it up to camp a week from tomorrow to demonstrate to the scouts outdoor cooking techniques (as part of my Wood Badge ticket). I am hoping that I will feel well enough to: (a) actually go up next Thursday and (b) stay until Saturday. That would make me happy! Here’s hoping.

Friday my big brother comes to visit with his 5 year old son. I’m really looking forward to seeing Sid and and his son. It is difficult not having family closer, so having them visit will be a pleasure.

Until next time…

Merle

..and now for something completely different

I fully intended to provide part 2 of my list of things not to say, but apparently my body has a different opinion. For the majority of my treatment, I have felt generally okay (what’s a little nausea in the balance of the good that the treatment is doing?)! In fact, today I told Dr. Kauh (my oncologist) that I was feeling surprisingly well; that I was expecting to feel worse and that I was pleased that I was feeling as good as I did! Dr. Kauh, who has a dark/odd sense of humor, responded that I should not expect that to continue.

Well, if I believed in such things, I would have to say I must have jinxed myself, as I am feeling pretty crappy today. Whereas last week I could get by with only one or two Compazine tablets, today I have taken at least four. I’m hoping this will pass and is, at least in part, attributable to the roast beef bones that I ate last night. Tomorrow will be better, right?

As a result, I’m going to hold off on writing my list until tomorrow in the hopes that I’ll be more up to the task then. Then again, perhaps this is just an elaborate bait and switch tactic formulated to drive traffic to my site (as I am sure that everyone who read yesterdays post called their friends and told THEM to read, too!). :-)

Talk to you later, y’all!

Merle