Are You Talkin' To Me? - Part 1

Dear Newly Diagnosed Cancer Patient,


I am talking (actually writing) to you. Let's get the obvious out of the way first. Your new situation stinks. Really stinks. You are having to process the questions of "What," "How," "Why," "Where," and "When." You have no idea what to do next or who to talk to about what to do next. You've had a lot of information thrown at you in the first 24 hours but all you can retain is, "I have cancer." The fun is only starting.


I wish someone would have handed me a letter in the first 24 hours like the one I am intending to write you. If you are reading this on my blog, it may take a couple days to finish, but I will get to the point.


The very first thing I want to tell you is that you ARE NOT a cancer patient. You may hear that the word "survivor" now applies to you. It is used with the intent of letting you know that you didn't die at diagnosis. You will now have a plan to help you get rid of or keep the cancer in check. But how do you know what to do? How do you decide what to do? You will talk to lots of folks in the next few days. You will meet some great folks. I can tell you that they are in their chosen field so they can help others like yourself. That is what they knew to do when they decided this is what they wanted to do. Talk to them. If you are uncomfortable with them, that's OK. You can tell them so. The very first thing you need to do is to be comfortable with them. Even though you feel like you are placing your life in their hands, it is still your life. Even though you would like to hand over the reins to someone else for now, you can be in control of this. That is why I don't use the word "survivor." I challenge myself and throw and gentle challenge to you to use the word "aliver." With apologies to my regular blog readers, I will repeat that, to me, "aliver" means I am alive, intend to stay alive and by doing so, I can control my current circumstances.


Simply saying it, however, doesn't make it so. You will need to establish how you get there. You will also hear the phrase, "This is entirely about you." It doesn't mean you are attracting attention to yourself. It doesn't mean people now have to bow down to your requests. It simply means that all you have to focus on right now is getting well. The great thing is that you will be surrounded by a group of medical professionals who have the same focus. Your friends and family will also join in. I struggled with that phrase at the outset and some great folks explained to me what it meant. To the medical folks, it meant that if I allowed myself to show up to appointments and talk to them about what is going on with me, physically and emotionally, they would do all in their power to help me get well. To my friends and family, I simply had to tell that what was going on physically and emotionally (either verbally, or in my blog) so they would know what they could do. As the medical folks used their knowledge to treat me, friends and family used their knowledge and intuition to take care of me.


Once, when I vocalized to a friend how uncomfortable I was accepting the kindness of friends and family, she replied, "As the medical folks are treating you with medicine, we need to be able to do these things to administer our own form of medicine to help you get well. We want to be a part of it. So sit down and enjoy the ride." I did. As I look back on those days, I know there were some tough physical and emotional days in there, but the days that stand out, are the days that I knew I was being taken care of. Those were the days when I knew I was resting in the hands of God on earth. Allow yourself those same kind of days. Even though it is because of you that these actions are occurring, your gracious receipt of them makes it about the giver. A sweet Amish lady from South Central Virginia once told me, "A gift not accepted is a blessing denied."


For now, bask in the goodness that is waiting to surround you. Let it drench you. It is good medicine.


Now rest.....(see you soon).

"Would You Be Free From...."

Had a regularly scheduled checkup with my oncologist today. All is well. Every one of those visits includes a CBC (Complete Blood Count - looking for any abnormalities in the various parts of the blood "recipe."). All of my recent CBC's (say from reaching back to August) indicated that all parts of the blood had returned to "normal." Except for them pesky platelets. They are the last thing to bounce back from extensive chemotherapy treatments. The fact that all of the other parts of my blood "recipe" had returned to normal was a good sign the platelets would follow. Today's platelet count was at the same number they were when I was donating platelets on a regular schedule over 2 years ago and beyond. As a matter of fact, the last two times I ever donated platelets (in August and September of 2008) my counts were just barely above the minimum level the blood donor would accept - significantly lower than my "best" and lower than today's count. This means....further confirmation that the body has healed from the "alien" and from the chemotherapy.

However.....at this point, for me at least, one does turn a sensitive ear to hearing the statistics about the odds  of relapse and secondary cancer potential as a result of the treatments. I shared that with my doctor today and her response was, "You are no longer defined by cancer. You were shaped by it. It is no longer part of you. You need to live your life with that knowledge. God forbid, if there is a relapse, or formation of a secondary cancer, we will deal with that when it happens. There are other options that exist if it does. For now, you are doing what you need to do to keep it away or catch it early. That is, coming to us and letting us check on you on a regular schedule. Stick to that."

I knew all of that, but it was good to hear her say it. That's what I have been doing, but only she, another caregiver, or another "aliver" can say it with credibility.

Speaking of credibility, I told her that I have been telling newly diagnosed "alivers" that they should not pay any attention to five year survival rates for their particular cancer. As the treatment options have changed dramatically over time, there is no statistic that is based on an event that occurred five years ago that should apply to someone who is newly diagnosed. She agreed.

Hah, I got that one right!

"There is power, power, wonder working power...." - Lewis E. Jones

Up next, "Saints of Cancer" and "A Letter To A New "Aliver."

Maybe This Instead....

The man had eyes that smiled. I've only known him for a few short years. When I first started attending church where I now attend, he and his wife sat in the pew in front of me. I didn't get to know them until a year or so after I started attending church there. However, I always enjoyed watching him interact with his grandson. There was an amazing bond between them. I got to know he and his wife after I started my "sabbatical." They reached out to me with kind words, cards and their prayers. Humbling. One thing about him I always noticed (and others that knew him also spoke of it) was when he talked to you, his eyes smiled at you. Last Sunday, as I visited with him in person for the last time (although I didn't know it then), there was a point in our conversation when I said something that elicited a response of "endearment" from him. I busted my gut in laughter. After I wiped the tears of laughter out of my eyes, I looked in his eyes and saw the smile. That is how I will remember him.

"There are accents in the eye which are not on the tongue..."
- Thomas Hardy


"What a wonderful phenomenon it is, carefully considered, when the human eye, that jewel of organic structures, concentrates its moist brilliance on another human creature!" - Thomas Mann 


Réquiem aetérnam dona eis Dómine;
et lux perpétua lúceat eis.
Requiéscant in pace.
Amen.

I Like The Room

I was in this space today while visiting the United States Holocaust Memorial Museum. If you have never been there, you enter this room toward the end of your procession through the museum. I have visited the museum on 2 occasions prior to today and I have always found this room to be a spot in which I spend a few lingering moments just to process what I have just seen. One thing I noticed today was there was very little talking, and if so, it was in low tones, among those in the room. 

Two inscriptions on the wall overhead spoke to me today.

Only guard yourself and guard your soul carefully, lest you forget the things your eyes saw, and lest these things depart your heart all the days of your life, and you shall make them known to your children, and to your children's children.

Source: Deuteronomy 4:9

I call heaven and earth to witness this day: I have put before you life and death, blessing and curse. Choose life -- that you and your offspring shall live.

Source: Deuteronomy 30:19

שלום

One Of The Goofy Things

I was telling someone the other day about the trip to San Diego.

One of the stories from the trip is that Ann Jillian was the mistress of ceremonies for the event. There was a group photo taken that included the three honored nurses, the writers of the essays and Ann Jillian. We were lined up facing to our right and then turning our heads to face the camera. Ann Jillian was standing behind me and I was kidding with her about how we should do a kick line dance. She put her hands on my waist and we started cutting up for a bit. Afterwards, I went up to her to get an autograph for a friend (who named her daughter "Jillian" in honor of Ann Jillian) and after she signed her autograph, she gave me a copy of one of her CD's and then gave me a peck on the cheek. I turned around and walked back to the group I was with - who had witnessed the whole thing. Got some grief from them and told them I would probably never wash that cheek again. Fussed at them because they didn't get a picture of it. Made them swear that they would validate my story if it ever needed validating.

As I tell that story to others, I tell them, "Had you told me 20-30 years ago that some evening in California I would meet Ann Jillian, she would put her hands on my waist and then kiss me, I would have asked what it would take to make that happen."

Ah, the gifts that come from the cancer thing.

I'm just sayin.

The Page At The Very Beginning....

The very first page of my blog had a picture of the banana trees that I had growing in my yard in 2008. The care of them requires that you dig them up and bring them inside for the winter - otherwise, since they are comprised of a lot of water, they will freeze and die. Ironically, in 2008, I dug them up and brought them inside the day before I was diagnosed. I remember it well. I remember that I didn't feel very well and then I remember struggling with them to bring them in (if they are over 4 feet tall, they are pretty heavy).

Last year, I brought them inside the day I received the news that my scans showed I was cancer free and that I could start resuming all "normal" activities. This year, I brought them in tonight - the 2 year "anniversary" of my first bone marrow biopsy. The picture above shows the shovel I used to dig them up and it is sitting in the hole of one of the banana trees that is now "wintering" in my utility room.

Funny how those anniversaries, memories and connections to occasions work out.

I've mentioned recently about how conversations among cancer patients go and how I have struggled with what is the right thing to say. I've had the opportunity lately to speak as a Patient Honoree for the local chapter of the Leukemia and Lymphoma Society. When I speak, I watch the faces in the crowd and how they react to me. It covers the spectrum. Although I am tempted to "cut loose" with my version of the events, I can tell by the faces that I have to learn to meet the crowd I am talking to where they are emotionally with the cancer thing. Some people may have experienced a recent loss of a friend or family member and it is still fresh in their mind, and painful as a result. They may be there seeking an outlet for their grief and want to honor their friend or family member by raising funds for research. That's awesome of them to do that.

Also in the crowd are former patients who experienced treatments, etc. much more difficult than mine. One thing I do say at every opportunity is that I don't consider myself a survivor. As I have mentioned before, I am using the term "Aliver." When I present that concept, it's pretty cool to watch the look go across the faces in the crowd. Afterwards, usually it's the former cancer patients that will come up to me and tell me that they like the new term. I ask them to continue using it and most of all, continue to live it. Last night, one of the former patients, who is running in a marathon in Vancouver sometime next year, told me she was going to put it on her t-shirt. I like it.

The point of this is not to self promote, but to show people what hope is and what it can do. It's about meeting people where they are and then bringing them to where they can be. I've experienced that from all of my caregivers in the past. 

It's a good habit to want to establish for oneself. It's one that I aspire to and have a long way to go. But I think it's a good goal on which to focus. 

Even large institutions that are focused on the mission of compassion, care and acceptance struggle with it. 

"Let us have but one end in view, the welfare of humanity; and let us put aside all selfishness in consideration of language, nationality, or religion."

(John Comenius,17th century philosopher)

Reminded Of This

Early this morning I voted. Interestingly enough, the last two elections in which I voted (General Election in 2008 and a Virginia Election in 2009), I was waiting to hear what was still residing in my body. Today was different. That was cool.

But, what I was reminded of today was a conversation I had with some folks from Ireland right after the General Election in 2000. As the case was going on in the Supreme Court, I asked them what their thoughts were on the current activity in America.

I thought they summed it up best.

"It's just like an election in Ireland, except you Americans aren't drinking enough whisky!"

Their words, not mine.