Sunday, February 12, 2012

My Colonoscopy, Results in Freedom!

Yep, another hospital gown!

After several years of encouragement, from my gynecological oncologist, I finally acquiesced and made an appointment for the dreaded, yet necessary colonoscopy. I figured that the way my luck had been going, I might as well bite the bullet, and get it done. I strategically scheduled my colonoscopy for the week following Thanksgiving; full well knowing that I would be stuffing myself on that day, and could probably benefit from the two day fast and cleanse.

Of course, I checked with my current oncologist, as I am taking Sprycel for leukemia, which thins my blood,  to see whether or not he had any special instructions, that I may needed to adhere to. He did, and it was the very best news that I had gotten in quite some time. He told me that I needed to stop taking the Sprycel for two days prior to, and the day of, my colonoscopy. Since my colonoscopy was scheduled for a Tuesday, and I don’t have to take the Sprycel on Friday’s, I took the liberty of lengthening my Sprycel vacation by one day, so that I would actually have five days, with no medication.

While the preparation for the colonoscopy wasn’t a whole lot of fun, being drug free made that part of the colonoscopy, so worth it. I felt like myself and had energy, even though I had nothing to eat but Jell-O. The sluggish, crappy over-all feeling that has become a part of my everyday life was gone on the second day of being drug free. Fortunately, my colonoscopy was scheduled for the morning, so that I wouldn’t have to starve all day long. I woke up nauseous and was a bit apprehensive of the procedure, and the results.

My poor father was once again the “designated driver”, the poor man has had to drop me off and pick me up for many different medical procedures. I told him that if the results were not good, that he could just run me over, instead of bringing me home. The ride was an adventure, as usual! Thanks, Dad!

Once we got to the outpatient surgery center, they quickly brought me back into the waiting area. I told them that I was quite nauseous, had leukemia and passed out if I threw up. Yes, another one of my lovely quirks; vegal nerve syndrome, I guess. They decided that a little Zofran, an anti-nausea medication, never hurt anyone. As luck would have it, my gurney was located right across from the room in which they performed the colonoscopies. I had the good fortune of watching three, very, very large males be wheeled in, and then wheeled out of that room; not a pretty site.  The most disturbing part of this scenario was the fact that they were awake when they went in, and awake when they came out. This did not make me happy. I wanted no part of remembering anything that went on in that room.

Finally, it was my turn. I was wheeled into the room and introduced to the doctor. His side-kick was a young man that reminded me of my son’s friend, Justin. Of course, I couldn’t keep my big mouth shut, and told him so. Funny thing is, that he has that Justin Bieber hair, and he said, yeah I am always being told that. I said, “Really? People from Boise come here often?” He said, “No, why?”  I said, “Because that is where Justin lives.” He laughed, and said that he immediately thought that I meant Justin Bieber, and was so relieved that I didn’t. I asked him, if that now meant, that he would be certain to keep me knocked out, during the whole procedure. He laughed again and told me that he was pretty darn sure that he could do that.

I told him that I saw all of those guys coming out the door still awake, and that he would be really sorry if that was me. He told me that I was going to me an easy case, to knock out, and to perform the colonoscopy; due to the size differential. I was relieved. The doctor told me that the key to staying knocked out was a good oxygen level; as long as your oxygen level remains “normal” they can continue to sedate you. If it drops, so does the sedation. So my advice, to anyone undergoing a colonoscopy, is to breathe deeply! I told the both of them, that if my oxygen level began to drop, that they must begin chanting, “breathe, breathe, breathe”…and I would know what they meant.

I also warned the doctor that if the results were unfavorable, that I would likely burst into tears, because my latest test results have resulted in an unfavorable way; chronic myelogenous leukemia. I just wanted to forewarn him. Finally, after all of that was said and done, they began to administer the medication; I immediately began to sing the song that they had playing on their boom box; two funny guys, rockin’ out to oldies, while they scope your bum……doesn’t get much more amusing than that! There was only one time when I felt “something”, it wasn’t pain, but I did make a noise, to let them know; I heard them both say “breathe”, it made me smile, right back into oblivion. Great job, guys!

Shortly after I was wheeled into that room, the doctor was shaking me awake. He showed me the pictures of my colon, and told me that everything looked great. He also told me that I did not need to return for another ten years. Good news for the colon, bad news for a Sprycel vacation. I honestly have to say, that having the colonoscopy was well worth being off of my Sprycel, for five days.

So whether or not you have leukemia, I would recommend having your colonoscopy done, at the current recommended age of fifty. Make certain that your doctor believes in sedation and remember to breathe!

Thursday, February 9, 2012

My One Year Leukemia Anniversary; I Am Still Kicking!

Life is Magical!

Today marks 365 days that I have lived, knowing that I have chronic myelogenous leukemia. I am certain that I actually had this cancer prior to one year ago; I just didn’t know it. It is funny how some memories in life are so vivid and how others fade away. Much of the past year has turned into a bit of a blur, but where I was standing and what I was doing, at the exact moment that my doctor told me that I had leukemia, is permanently imbedded on a brain cell that will never forget.

I was visiting my folks in Palm Desert, California. I had had a doctor’s appointment the previous day; I had had blood work drawn, but did not expect anything out of the ordinary. My phone rang as I was getting ready for the day. It was my doctors and he said, “Michele, I don’t really know how to tell you this, but I am sorry to say that you have leukemia”. After a brief silence, I said, “What do you mean, I have leukemia?” He said, “You need to go immediately to the emergency room, Dr. Camacho will be waiting for you there”.
Needless to say, I was shocked and confused. Fortunately for me, the type of leukemia that I have, chronic myelougenous leukemia, which happens to be a rare form of the disease, is currently managed through a type of medication that blocks the chromosomal switch, which is characteristic of this type of blood cancer. Many people refer to this treatment as oral chemotherapy, but from what I understand, it is actually a tyrosine kinase inhibitor. This drug has kept me alive for the past year, and I intend for it to keep me alive for many more years to come.

During this past year, I have struggled and triumphed in many ways. Living on a day to day basis with cancer, totally sucks! The alternative would be even worse. I hate how the medication makes me feel and it has been quite an adjustment, learning to live my life in a completely different manner than I used to. Never knowing how much energy that I will have, and whether or not I will feel well enough to participate in whatever activity that I may wish, has certainly been a huge adjustment. I have always been a person, on the go, with little regard to limitations.

Limitations are no fun at all, my heart and soul say go, and my body says, I don’t think so. My hair has grown back in with a life of its’ own; it is now curly and out of control. My face I barely recognize in the mornings, due to my puffy, swollen eyes. I feel as though I have aged ten years, in one. It’s not enough that I should feel like crap, but do I really have to look like crap, too?

I am still at a point where I require at least ten hours of sleep a night. The actual process of waking up every morning is like emerging from a deep coma. My mind awakens and literally has to plead to wake up my body and force my eyes to open. I feel as though I have been drugged and just cannot regain full consciousness. It is the strangest sensation and I often wonder if that is what true comatose patients experience.

On the other hand, and the brighter side of things, my last PCR test, a blood test that measures the amount of disease on my body, returned “undetectable” which is the best possible result. It means that my BCR-ABL counts are in the negative range, and that the medication is working. Of course, I was hoping for a reduction in my medication when this happened, but my doctor quickly informed me that we are still dealing with leukemia. So, maybe, if my numbers remain in the negative, throughout this year, I will be able to reduce my medication next year. My doctor believes that the quicker that you reach this goal, this better your long term prognosis is. Keep the prayers coming for continued positive results and that my cancer does not find a way to become tolerant to this medication.

Another positive aspect of this cancer is that it has pushed me back into the creative writing side of my brain, which has been squelched by all of the other physical creative outlets that I have been focusing on for many, many years. It seems that I no longer have the energy it requires to tackle many of those other, more physical, creative activities. I am still dancing, but have had to cut back drastically. I am hoping to begin to rebuild some of my stamina and strength this year.

The most rewarding and cherished thing that has resulted from this disease, has been the outpouring support and love from my family, friends, and yes, even strangers. This support has come to me spiritually and monetarily and I will never be able to thank each and every one of you enough. I have been astounded by the generosity, kindness and support from so many. It really does my heart a world of good, and gives me the courage and strength to face this leukemia every day. Hopefully this year, I will be able to do more for others who are in need.

One year down, many, many more to go! 

Monday, February 6, 2012

Leukemia and the Super Bowl; I Plan to Stay in the Game!

Yup, the hair came back curly!

I suppose that the Super Bowl will forever mark the first telltale signs that I was living, without knowing, that I had leukemia. It was one Super Bowl ago, in February of 2010 that I really began to be affected by my symptoms of leukemia.

Last February, in a rush to complete yard work, before settling in to “Super Bowl Party Mode”, I struggled to mow the front yard. I was so aggravated with myself for having to really push through and get the front yard mowed. It was something that normally only took about forty five minutes to complete, yet this time, it had taken me over an hour. I just could not understand why it was so difficult, and why I had to push so hard, just to mow the front lawn.

Next came the Super Bowl meal; I just could not eat it. And I certainly could not even slug down one Bud-Light! Did it occur to me that something was seriously wrong? Nope, not even an inkling; despite the fact that I could not even go to bed before midnight, due to feeling so stuffed, that I felt as though I was going to burst.
Fast forward one year, to this Super Bowl. I have now been living with the knowledge that I have chronic myelogenous leukemia, for almost one year. Looking back, the year has flown by, and been filled with many ups and downs. The “ups” include that fact that I am still here, and responding well to my medication. The “downs” are that the medication often makes me feel like crap! I am not complaining, and I am very glad to be here, but I do hope that someday, there will come a time, when I can either reduce my meds, or they will come up with a new one, with fewer side effects.

So, it is a bittersweet day for me; the Super Bowl. I suppose that it really is quite poignant; watching a football game, where two teams are battling, to the best of their ability to “win”. I am no different; I battle my battle, every day; planning and strategizing on how best, to conquer the enemy. It is my very own Super Bowl, a game that I will play for the rest of my life. A game that depends upon me to take my medication every single day, at the exact same time, to continue to have my blood tested regularly, get an appropriate amount of sleep and exercise, and to eat in a healthy manner. I must always be on guard for symptoms and side effects that may arise, and continue to read the play book, always in search of the newest and greatest treatment available.

I need to keep my head in the game, and to stay positive and focused at all times. I need to see myself crossing the goal line, over and over, and remember, that when I fumble, or my pass is intercepted, that I need to shake it off, get right back out there on the field, and to keep on fighting. There will be many Super Bowls to come, and there are many, many of us, that must fight their very own personal Super Bowl every day, but as a part of that team, I promise to continue, to fight that fight, every single day!

Happy Super Bowl, to you all!

Bricks for the Brave!!