Saturday, November 27, 2010

November: Pancreatic Cancer Awareness Month

In October, I wrote about October being the Breast Cancer Awareness Month. Perhaps a little preachy, but things that I felt I must say. The irony of being diagnosed with breast cancer in October 2007 and then undergoing a double mastectomy in October of 2007 is not lost on me. And my dear Twigs friends had to list listen to a little, but also had the rare opportunity to reach in a pink bag to feel what a prosthetic breast feels like. I am usually bold and out there, but so many of these diseases are so hushed. Take care of yourself or you can have what's in the pink bag.

At last, to the point. November is Pancreatic Cancer Awareness Month. I imagine that very few even know where their pancreas is or what it does. No matter..... but you have to have one to live. This cancer is often diagnosed after the disease has progressed to the extent that no "traditional medical options" are available. The symptoms can be vague, easily thought to be some other ailment, so many other diagnosis may be given before the inevitable Big C diagnosis is made. Detected very early, like many cancers, there is a high cure rate if diagnosed early. Otherwise, it is highly lethal, with not much time between diagnosis and death. And much of that time is extremely unpleasant. (Disclaimer: Be careful what sites you check out. It's always best to stick with major clinics or hospitals and avoid Uncle Joe's)

Not much time typically passes from a progressed pancreatic cancer diagnosis to death. Even those final days, however many there are, may completely rob the person (who is being called a patient now because they no longer are a person) of energy, mobility, controlled pain. We are not talking a very lengthy period. Sometimes it is days, or weeks, or a few months. But from what I understand, the desire to "be done" can come pretty quickly.

Movies always allow those dying cancer people to look pretty good to the end. To desire visitors and welcome them warmly. No one is crying from pain, vomiting, curled in the fetal position, hoping, praying, that in a few minutes they will feel a bit better, at least enough to acknowledge the visitors. We the living need to go see our dying loved ones. It makes sense. But it can be so incredibly hard on the person being visited. This is the last look, the last words, the last opportunity to heal old wounds or correct any grievances.

And then it is done. The living cry and mourn, the dying keep dying. I have been told that death from pancreatic cancer can be the answer to prayers.

My Aunt Sally, my Mother's sister, courageously fought pancreatic cancer. The time between diagnosis and death was not lengthy. She was able to wrap up a few projects. Her daughter, my cousin Anne, and she looked at old and not-so-old pictures, and she told Anne all about who was there, where there was, and why the pictures still mattered. Scrapbooks and photo albums were made. I think (although I am not totally sure) that I heard a story of a lot of pictures ending up in the recycle bin. Time goes by and we can't remember who it was we were so happily drinking margaritas with in that particular photo.....

My Uncle Hugh, her one and only husband, quickly had renovated their home to allow my Aunt Sally to remain on the main floor and avoid the challenge of the stairs. They were in for a fight! After all, she had survived breast cancer and a double mastectomy, then major reconstruction surgery, so the ups and downs of the cancer race were already familiar. It is those who are distanced by a few degrees of separation that think and say things about a definite death sentence, that a person will never make it, and even take a closer look in the china hutch. The cancer warrior fights until there is no fight left, regardless of how long that may be.

I have lit a candle every day this month in honor of my Aunt, who I was so happily named after. I don't have any way of making sense of any of it. I just know it really sucks. There had been some distance among my Mother and her siblings, so my relationship with my Aunt had not progressed past my teens. But ultimately what matters most is there was love, honor, and respect between the two sisters in April 1970 that I was born as Sally and christened as Sally. What an honor that is. Her dignity in death reminds me that we each get to choose our end. Who will be there, or not. Where it will take place, or not. What needs closure, or not.

In honor of my Aunt Sally, I encourage each of you to Google pancreatic cancer and learn about the early warning signs, risk factors, and what you can do. Most of all, I encourage you to know your body and when something is not "right" get it checked. Take a few hours out of you life each year (yes, you can fit this in) for an annual check-up with your doctor.

Thank you, Aunt Sally, for always doing what you thought was right, for your efforts and accomplishments at home and in the Norman Library System, and for teaching countless others how to fight and how to speak up and say no more fighting. See you soon....................

Friday, November 26, 2010

Happy Apples

I just want to let the world know that Happy Apples do not make me very happy.

They are the pre-packaged caramel apples that are sold seasonally in the grocery store. The apple is too small and often not crisp. So as a caramel apple connoisseur, Happy's apples are not so happy. It is better to shell out the dollars at Rocky Mountain Chocolate Factory or the summer fair.

Just an FYI!

Happy Thanksgiving

I hope each and every one of your had a good Thanksgiving, whatever that may have entailed. It is one of those particular days, like Prom, New Year's Eve, etc. where one is expected to have a wonderful memory-making day. There is a lot of pressure for good food, good company, and happy memories. If that is what you were hoping for and got it, I am very happy for you. For those who fell short, I get it. It is not easy to always be "on" or to be cheerful.

I am sure that you tend to call to mind, and remind all the children within hearing distance, that some people have no food to eat. And nowhere to sleep. No family to enjoy.

Our particular community has some tremendous resources. But I always think during grace that there are far too many people out there, everywhere, who are not surrounding a table circled by people they love. It hurts knowing this and I imagine you have all felt this way at Thanksgiving or Christmas.

Another challenge I find in these types of gatherings is that I usually feel alone in a room full of people I care about. While there is no shortage on conversation and kitchen tasks, I have this odd sensation that I am really not there, just my body. Have you ever felt alone in a crowded room? As if you are somehow so different that it sets you apart?

This year we had a great day at our neighbors, the Sauberans. This is the family where the boys have stayed when Craig and I have been in Seattle for medical things. It was a good day. The kids were busy playing, downstairs, thank goodness! The adults were upstairs all working on the dishes each were to contribute. I tried a questionable pumpkin pie and an apple caramel pie, which Misty dropped on the floor as she was putting it in the oven. (Sorry Misty, just had to dig!). I also did some side dishes and chocolate mouse. It was a fun but tiring day. Finally I hit my limit and it was time to go home.

Despite how much I enjoyed the day, and despite the knowledge that I actually made it to and through the holiday, not having to stay at home, I admit I had that sense of loneliness. The house was filled with people I love, people I want to talk to and know better, yet that damn sensation of being alone persisted. I was ashamed that when at dinner we went around the table to say what we each were grateful for and I had nothing to say. I literally had to take a pass. I was unable to articulate my feelings. It is almost impossible for me to describe the vast number of things I am grateful for. And I am unable to this, apparently, with so much I am not grateful for and resent, all at the same time. Realistic but sad. I should have done better, and done better for my children.

I was sent these words of wisdom, written by the late Erma Bombeck. Most of you know it is a very rare day that I forward an email. But I would like to share this, as it reminded me of many simple things to be grateful for, even when one is at a loss of their own personal reasons:

(written after she found out she was dying from cancer).

I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren't there for the day.

I would have burned the pink candle sculpted like a rose before it melted in storage.

I would have talked less and listened more.

I would have invited friends over to dinner even if the carpet was stained, or the sofa faded.

I would have eaten the popcorn in the 'good' living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.

I would have taken the time to listen to my grandfather ramble about his youth.

I would have shared more of the responsibility carried by my husband.

I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed.

I would have sat on the lawn with my grass stains.

I would have cried and laughed less while watching television and more while watching life.

I would never have bought anything just because it was practical, wouldn't show soil, or was guaranteed to last a lifetime.

Instead of wishing away nine months of pregnancy, I'd have cherished every moment.

When my kids kissed me impetuously, I would never have said, 'Later. Now go get washed up for dinner.' There would have been more 'I love you's' More 'I'm sorry's.'

But mostly, given another shot at life, I would seize every minute.look at it and really see it . live it and never give it back. STOP SWEATING THE SMALL STUFF!

Don't worry about who doesn't like you, who has more, or who's doing what
Instead, let's cherish the relationships we have with those who do love us.

Think about how much time and effort goes in to appearances and doing things right. And boy do I need to work on that one!

In closing, even with our shoulders heavy from burden, uncertain futures, and obstacles that seem unable to overcome, there is always something to be grateful for. It may be little or big, but it's there. Just open your eyes.

Monday, November 15, 2010

Good News Is Better Late Than Never

Once again, the storm called "life" has thrown me about, to and fro, and I am incredibly late in writing again. While the craziness that often envelopes us I cannot apologize for, as it is almost entirely (okay, maybe some is me....) beyond my control, I DO apologize to the faithful reader, to those of you who still amaze me that you exist, that I left you hanging in regards to the very important doctor appointment that I had been stressing over during my last post. I do promise to be more mindful of this in the future as it is rather unfair for me to lay it out there and then leave you hanging. It really and truly amazes me that people still read this blog, and that people even still care.

Okay, so the nitty-gritty, and my likely feeble attempt to make a long story short. But the ultimate bottom line is that a suspected brain metastasis is negative. Hip-hip-hooray! And the second fun concern was that I had suffered a small stroke. Instead, I have a rather nasty increase in my neuropathy, just one of the many little fun party favors from all the chemo I have had. Hip-hip-hooray, I think.... While I am certainly not crazy about this development, nor the fact that it is essentially a game of attempting to control/lessen/alleviate symptoms rather than treating, curing, or eradicating them, I would say that given the choice of the three, I'll take the neuropathy.

(Because of my small tendency to be verbose, I think I will leave this post as the "I am sorry I made anyone worry unnecessarily and that I am relatively okay" and save the "wtf is happening to my body and get me to a doctor fast" details for another time. It is actually somewhat history at this point, it does remain part of my story.)

And because the sudden onset of symptoms I had experienced could also be caused by a tumor on the spine, we'll take a peak there too. Of course I was so disorganized last week, mainly because I was feeling so shitty, was scared out of my mind, and that I am essentially horribly and embarrassingly disorganized, I did in fact miss that MRI appointment last week. Oops.... But I have to admit, as those of you who know me well can attest, I very rarely miss appointments. Can I use my continuing failing memory as an excuse? Not sure on this one. I think likely a combination of both memory problems and a lack of desire to put myself in any situation that might end with more bad news.

So, my apologies to anyone who worried unnecessarily because I did not update my blog sooner. And thank you for still caring.

I have much, much more to write about, some good and some not so good, but I am hoping to try to catch up on at least Fall's festivities and fall-outs this week. Bets, anyone?

Monday, November 8, 2010

Tick Tock

It's 4:44 am and I am up, again.

I don't remember the last time I went to bed and slept through the night. For some reason I can sleep without wakening if I go back to bed in the morning. I can actually sleep into the afternoon. Not particularly convenient nor conducive to family life. I have a strict policy of not napping in the day out of fear that it will only make my nighttime insomnia even worse. Plus I never seem to fully recover from the nap.

I have always been a night person, which was an asset in college but no more. Most likely it is at the center of a big ball of side effects of some medication or another. Who knows. But I never had a chronic insomnia problem before transplant.

There are a lot, and I mean a LOT, of medications out there to help a person sleep. First there are the over the counters that are marketed for sleep. There are also herbal remedies that sometimes are highly regarded. Once you finish with all of those, one starts filling scrips for sleep meds. And there are a LOT of those too. Some work this way , another that. Some start at a lower strength and can move up. Some are addictive. Well, I guess most are addictive. But do I really care when I haven't slept in days?!

I exhausted all the meds on my insurance company's formulary (For those not familiar with med speak, your insurance company has a list of drugs, for every need possible, that they will approve. If one wants to go off the list, be ready to fight for it.Of course the non-formulary scrip was denied, so my doctor and her nurse (Crystal, you seriously rock, girlfriend)appealed it. It's a bit funny because the insurance company sends a list of drugs they will cover, generic and name brand, to the doctor, encouraging her to try those. Hmmmmmm. Funny thing is that we have already tried all those, which lead to this request for a non-formulary med. So then a waste of time explaining this and providing documentation of this occurs. Insurance bullshit at its finest.

I am tired. And tired in so many ways. But for now I just want to complain about being sleep-deprived. So there. I have complained!

Now, truth or ommission? I have a HUGE, VERY IMPORTANT doctor appointment in the morning. I am scared and nervous. Perhaps I will allow a nap after that.............