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Thursday, May 29, 2014

Was Hypothyroidism Causing Fatigue?

I have taken ten Levothyroxine (.05mg) tablets and so far, and I am here to report that I am actually feeling better. I have less fatigue, and wait for it……..less PAIN! I am actually still in a disbelief mode and keep checking the pain level in my feet and hands. I have not added the Gabapentin to the mix “yet”, as I like to be scientific and only make one change at a time.

I think I am most grateful for the relief in my hands at night. They still go numb and ache, but it is nothing like it has been; I noticed this change three days after starting the Levothyroxine. I thought it was a fluke but the degree of numbness and pain at night, seems to be less; I am actually able to sleep.

The foot pain has also gone down a notch or two; typically when we teach dance classes on Wednesday nights, I am in complete agony by the third class; last night I was still able to participate without limping. To say that I am thrilled beyond belief is an understatement.

The other really great outcome has been the lifting of the dark, gray cloud that made me feel so fatigued, that I was unable to move far from my sofa. This past week I have been able to plant flowers, start a knitting project and begin my painted markers for the garden, in addition to my “typical” daily routine. I do not know who is happier about this; me or my husband!

Of course at this moment, I am going to attribute these small victories to the Levothyroxine, despite the voice in the back of my head that keeps saying, “But what if this batch of Sprycel isn’t working?”  Although, the optimistic side of my heart says, “But what if the Sprycel IS working, but this batch just isn’t causing all of the bad side effects?” I have been on this new bottle of Sprycel for eight days.


I have been on an increased dose of Sprycel for one month due to my increased PCR, and had a PCR drawn yesterday to see if it is working. I will have a thyroid check in about a month. Keeping my fingers crossed for good results on both fronts.

Friday, May 23, 2014

Ringing the Cancer Bell


One of my favorite shows is the “Little Couple”; it is a show about Bill and Jen Arnold and their two adopted children. It is a story that brings awareness to dwarfism and what makes it so great is that these people, although challenged in many ways, never stop reaching for the stars. It is inspirational, fascinating and downright enjoyable.

Recently Jen Arnold was diagnosed with a rare form of cancer; the show followed her treatment and documented her recovery and eventual cure. The day she received thumbs up, an all-clear from her oncologist, her oncologist and the staff that treated her brought her over to “The Bell”; they told her that she had beat cancer and it was her turn to “Ring the Bell”! At first she was a bit reluctant, but once she started ringing the bell, you could visually see her face light up and her huge smile said it all; I fought hard, and I won!

That moment was bittersweet for me; I was so happy for her, but once again, it made me want to “ring the bell,” something that keeps being brought to my attention. The other night my Bunco Babes gathered for their monthly game night. This month it was at our house, so at the end of the night, I was still around for gossip time. The new gossip was that another neighbor was diagnosed with cancer; lung cancer. One of the gals in the circle is currently being treated for breast cancer. 

Being on the outside of that particular circle, my attention was drawn to them when I heard the word “cancer.” I heard the one gal saying that she had three more treatments and that the newly diagnosed neighbor had a specific number of treatments planned. While I am extremely happy for them, there was a small voice inside my head that said, “They will get to ring the bell.” 

Once again, I was reminded that someday…….”I WANT to ring the bell!” I know that this may seem silly to some, but after living with cancer for over three years, sometimes I am just weary. I don't want to think about or feel side effects, I don't want to have to see an oncologist every three months, I don’t want to have to read about new complications and losing a member of our ever increasing community, I don't want to have to worry about the new things that creep up, due to a continual dose of highly potent medication, and I WANT TO RING THE BELL!

I want to have the energy that I used to have, I want to ditch the pain, I want the headaches to go away and I want to be able to sleep the whole night through, without being woken up with hands that are so numb that they ache incessantly. I want to be able to say that I fought the fight, and I won! I want to win; I don't want to have to fight every day; apparently I want a lot of things! 

I am guessing that I must be in some sort of a three year slump; because there are times that I almost forget that I even have CML. Most of my days are good days; I have a happy life and I am so grateful to still be here to enjoy it; I have it better than many and I sometimes I must remind myself of that fact, but is it wrong to reach for the stars and shoot for the moon?


Is it wrong to want to “Ring the Bell?”

Thursday, May 22, 2014

Hypothyroidism; Could This Be Contributing to My Side Effects?

Since most of my life has been blessed with extremely good health, I have never had a doctor to call my own. On the rare occasions that I was a bit under the weather, I would simply go to an Urgent Care Center and be on my way. Of course I always had a gynecologist, and I had a great relationship with him, but I never found the need to have a person that was responsible for my overall well-being.

It has been three years and three months since my CML diagnosis and during that time, my oncologist has been my “go to” guy. He has treated my bronchitis and managed my side effects; he has looked over my overall health and is always available when I have a question or concern, but I have come to the realization that his primary function is to control my leukemia. This, coupled with the fact that he is 900 miles away, has led me to finding a new “go to” doctor that close to home.

One of the many benefits to having a doctor close to home is the convenience; no long road trip necessary! The other benefit is that I am no longer in Los Angeles, the land of camping out while waiting to see the doctor. The efficiency here in Boise is outstanding; I did not wait to see my doctor and all of my tests were scheduled and run ON TIME! I received my results promptly and my concerns have been quickly put to rest.

My EKG was normal, I do not have the final results on the echocardiogram yet, but the preliminary results look good; I know that these test may not be “necessary” but with all of the new information that is becoming available about long term TKI use, we thought that an established baseline was an appropriate protocol, to monitor my continuing health. 

The only thing that was a bit out of line was my thyroid; it was in the high “normal” range so we are treating that with .05 mg of Levothyroxine, with a recheck in 4-6 weeks. I am hoping that this explains my extreme fatigue and weight gain! Wouldn't that be something?

Apparently I am in the Hypothyroidism range; and I DO suffer from almost all of its' symptoms: hair loss, inability to think clearly, extreme fatigue, sensitivity to cold, dry skin, weight gain, puffiness, memory issues, joint and muscle pain, and high cholesterol what I find fascinating is that all of these symptoms are also symptoms for Sprycel. It certainly makes me wonder whether I am experiencing them because of my thyroid, because of the Sprycel, or am if I getting a double whammy, because they are caused by both? I suppose that time will tell, and of course, I am hoping and praying that the thyroid medication will bring me at least a small reprieve!

My wish list is less pain, softer skin, thicker hair, weight loss, as I would love to be able to go to my closet and "wear" the clothes hanging there, less puffiness, less pain and the biggie; lower cholesterol! Do you think that this is too much to ask for?

My new doctor also prescribed Estrace Vaginal Crème to help with vaginal dryness from the TKI’s; it is to be used two to three times a week, as needed. Next we tackled the nerve pain; we decided that I would try a low dose of Gabapentin (100 mg), in an attempt to get it under control. I have yet to try this new drug, but think I will be brave enough to give it a shot soon because getting rid of the nerve pain would improve my quality of life tremendously.


 I will see her again in two weeks to go over all of the testing, and to make any necessary adjustments to our plan of attack, in combatting the TKI side effects; I have decided that having a go-to person not only brings me peace of mind, but may also aid me in my quest to not only “live” with CML, but to Live WELL, with CML.

Tuesday, May 20, 2014

Turmoil in CML Land; Let’s Turn It into Power

Many people have the good fortune of floating through life footloose and fancy free; I often marvel at this phenomenon and wonder what living life in this manner would be like. As a person living with CML I have come to realize that my journey will never be footloose, or fancy free; granted, there will be times that I will be able to float along on smooth waters, but other times I will sink; with any luck, for the better part of the journey, I will just be able to bob along, on a slow and steady course.

This past week, those of us living with Chronic Myelogenous Leukemia, have experienced a gambit of emotions. We have been exposed to an advertising campaign that falsely claims that CML has been cured and we have been enlightened to the realization that an extremely dangerous, although rare condition, known as Leukemic Meningitis, is a possible complication of CML; for many of us this came as a shock.

Of course, because I am not a stick my head in the sand type person, my mind has been reeling; I am not certain which topic is more disturbing to me, although the “CML has been Cured” probably wins because this campaign was created; it was in someone’s control, someone made the decision to publicly air this campaign, despite the fact that all of us that are cured of CML, have the potential to develop Leukemic Meningitis, not to mention live with all of the other side effects, that affect us daily.

While claiming that CML has been cured put many of us into a rage, the realization of Leukemic Meningitis made many of us fearful; this is understandable. We are a very small group of human beings that share a rare disease; because of the internet we are able to connect. We are able to share our hopes and dreams, our fears and our frustrations.

We are able to offer support and share information. Often we have good news to share, but other times our news is difficult. We lose someone in our community, someone’s disease has accelerated or stopped responding to treatment, or a life threatening complication has developed. All of these things are a reality and I believe that it is normal for them to cause us to visit our own mortality.

When a very small community is faced with two major incidences in a short period of time, it is “normal” to feel confused, frightened and angry. It is ok to reach out to each other with our fears and concerns, and to look to each other for support and comfort, but what we all must remember is that each and every case is different.

Because of the internet we are able to stay connected; we are privy to information that many years ago would have been nearly impossible to get our hands on. Both of these things make us stronger; they give us the opportunity to become an educated and informed patient. The internet allows us to be a part of each other’s journey and gives us strength in numbers.

I hope that we will all continue to band together, and turn the turmoil of the past few weeks into power; power that will enable us to become more educated, more informed and better equipped to fight CML. By sticking together and continuing to voice our opinions, we can help shape the foundation of living with CML, for all of those that will continue to be diagnosed with this disease, in the days to come.

Because of the birth of TKI’s, our community will continue to grow, new information will continue to be discovered and we are all here to witness, and shape the world’s view of chronic myelogenous leukemia.


Blessings to all.

Friday, May 16, 2014

Internal Medicine Physician: I Hit the Jackpot!

For those of you that know me, you know that I am a stickler when it comes to my health, and the health of others. You know that I insist upon finding the correct fit when searching for a physician, and that I strongly believe in self education and advocacy.

I believe that the doctor/patient relationship is just that; a relationship. I believe that it is in the best interest of both parties to listen to each other, evaluate the situation and to then make medical decisions accordingly. 

This being said, I cannot believe that I “hit the jackpot” on my first try; I have found an internal medicine physician that I LOVE: shocking but true. I can count on one hand, probably two fingers, how many times that this has happened. I am still in utter and complete awe, as is my husband. He has NEVER heard my sing a doctor’s praises; especially right out of the gate.

What makes this internal medicine physician so awesome is her knowledge, her demeanor, her compassion, her willingness to listen and her responses. She was the most thorough physician that I have ever had the pleasure to meet, and get this; her office staff was awesome, too! Friendly, competent and on time!

I do not think that I have ever “seen” my doctor, at my scheduled appointment time; I always go to my doctor appointments fully prepared: something to eat and drink, a knitting project, a book and my iPad to play games; prepared for the long haul. Typically I have time to finish up my project, read my book and play a few games before I am ever called back to the second waiting area.

 Yesterday, I barely sat down; they called my name, took my vitals and put me in an examination room. I never even had the time to open my book; within seconds, the doctor appeared. She introduced herself and asked how she could help; an hour and a half later, I left her office completely satisfied, and grateful to have found a doctor that I can relate to; for once, I felt as though every aspect of my health had been addressed and thoroughly evaluated.

I told her about CML, the side effects and my growing concerns over long term drug use for CML. We decided that monitoring and treating current side effects would help with my daily life and that baselines for everything else would be a good idea. She ran blood work, including thyroid, ordered a chest x-ray for any fluid around my heart or lungs, did an EKG and ordered an echocardiogram. I will meet her again in two weeks to devise a medical health plan.

It has only been a day and she has already called with results from the tests that have been performed; I did not have to call and nag the office, even once; shocking. The other tests have been scheduled and my prescriptions are available for pick-up.

See, they ARE out there; we just need to find them.

 Competency at its best; I LOVE that!

Thursday, May 15, 2014

Internal Medicine Doctor for Me; Where to Begin

With the exception of having had ovarian tumors and currently living with chronic myelogenous leukemia; I am an extremely healthy person. I just do not get sick. I have had two bladder infections in my life, both treated at an urgent care center or emergency room. I do suffer from an obligatory case of bronchitis on a yearly basis; usually in October, which has been typically been treated by either my oncologist or my gynecological oncologist; I have never had a “doctor,” by this I mean a general physician, family doctor; on that people go to whenever they are sick with the “usual” stuff; sore throat ear ache, fever, flu, nausea, etc.


Since I live in Boise, Idaho and my oncologist is in Los Angeles, California and I am living with a chronic cancer that seems to have ever increasing side effects from my treatment, I have decided that I should put my big girl panties on and form a relationship with a local physician; just in case.

Now, shopping for a physician is not something I enjoy; as a matter of fact, I actually hate it! I am extremely particular when it comes to my health and my expectations of the person that I entrust my life to, are extremely high; not many that I have met fit the bill and searching to find the right fit is often like finding the needle, in the haystack.

So, where does one begin? For me, I usually seek out the advice of another physician, or a nurse. Nurses in particular know “how” doctors treat their patients; doctors know “who” to trust with their life. Once I have done some homework, I make some calls; I talk to the office staff. Evaluating the office staff is really important as these are the people that you will deal with, prior to getting to your physician; they make your appointments, often assess your “need” and also schedule follow up visits and tests that are ordered; you may also be at their mercy when it comes to receiving the results of ordered tests. You had better like the office staff!

Next comes the really crucial part of forming a long term relationship; the physician. How does he/she make you feel? Does he/she ask questions and listen to your answers? Does he/she appear to take an honest interest in you and your health? Do you communicate well with each other? Do you feel rushed or unimportant? Does he/she seem knowledgeable?  And most importantly, would you trust this person with your life, and would you feel comfortable knowing that this person had your life in their hands? There are many things that come into play when choosing a physician and these are just some of the guidelines that I use.

I also decided that I would choose an Internal Medicine Physician as opposed to a Family Practitioner as an internist deals with the prevention, diagnosis and treatment of adult diseases.  ACP; American College of Physicians offers this information:

Caring for the Whole Patient

Internists are equipped to deal with whatever problem a patient brings -- no matter how common or rare, or how simple or complex. They are specially trained to solve puzzling diagnostic problems and can handle severe chronic illnesses and situations where several different illnesses may strike at the same time. They also bring to patients an understanding of wellness (disease prevention and the promotion of health), women's health, substance abuse, mental health, as well as effective treatment of common problems of the eyes, ears, skin, nervous system and reproductive organs.

Caring for You for Life

In today's complex medical environment, internists take pride in caring for their patients for life -- in the office or clinic, during hospitalization and intensive care, and in nursing homes. When other medical specialists, such as surgeons or obstetricians, are involved, they coordinate their patient's care and manage difficult medical problems associated with that care.

You can also go one step further and check their credentials; many places also have a rating system available online.

This being said, do you think that I have found my perfect match?


Friday, May 9, 2014

OHSU Apologizes for Their Blunder: CML Cured


Shortly after OHSU Knight Cancer Institute debuted their new advertising campaign ONEDOWN, stating that CML was Cured, those of us living with CML began such a ruckus that OHSU revised their advertising campaign's wording from "Cured" to "R.I.P. CML" to “Lethal Becomes Nonlethal,"  in an attempt to find the correct words to fuel their campaign, without offending those of us, currently living with CML.I am still, however, perturbed by the whole "ONEDOWN" wording campaign.

They also issued an apology. I truly believe that this faux pas was likely devised by an advertising company, in an attempt to utilize the success of Gleevec, which does manage CML and give us all a new lease in life, to raise money in order to do the same for other cancers; I do not believe that it was ever intended to disrespect or make light of those of us living with CML.

As a person living with CML for three- plus years, I am truly grateful and ever indebted to the research that OHSU Knight Cancer Center has done, developing the drug that will hopefully allow me to live long enough, to actually see a “cure” for CML; to someday allow me to ring the bell.

I believe that the view of a person living with CML and the view of researchers and oncologists differ greatly. I also believe that in a perfect world, we would all walk in each other’s’ shoes. I understand that in order to continue to search for “cures,” money needs to be raised; and what greater way to raise money than to share stories of success.  I applaud OHSU’s dedication and efforts in forging forward in their attempt to eradicate cancers, one by one.

I am not certain that “Lethal Becomes Nonlethal” is the appropriate slogan for what they are attempting to portray, but it is definitely better than “CML Cured”. I almost think that “R.I.P. CML” is more appropriate since that really IS what Gleevec does; it stops CML from multiplying to the point of causing death. We all actually still “have” CML, and our TKI’s are managing it. We all hope and pray that every PCR test  we take will show that our BCR-Abl is under control and is continuing to“Rest in Peace."

Food for thought:
In my opinion, a focus group that works closely with an advertising company, when dealing with sensitive subject matter, can save all persons involved, a whole lot of heartache and a whole lot of money!

Contact info: Michele Tschirhart at Meeeesh51@gmail.com

I humbly accept this apology, and admire the quick response:

Letter to the CML Community from Dr. Brian Druker

"Words can provide hope and inspire people to action. They can also evoke powerful emotions. In launching a campaign to raise funds for cancer research, we saw a message of hope and a rallying cry to spark engagement from people. Some in the CML community—a community we consider of vital importance to our efforts—disagreed.

We've heard from CML patients who feel the word ‘cure’ used in the campaign takes focus off the challenges they face. Some have side effects from therapy, concerns about their medical bills or fears of what will happen if the treatment stops working. Some even feel marginalized by those with other cancers who express that they should feel “lucky.” And there is worry that we may imply that no more progress is needed in treating CML.

We understand, and apologize. We’re making significant changes to our campaign. We encourage your constituents to revisit our website to see the changes we’ve made there. We’re focusing our message on those concepts that are more universally accepted: that we have revolutionized the treatment of CML with Gleevec® and turned a deadly cancer into one where life expectancy mirrors that of the general population.
In making this decision, I share the following thoughts.

I see patients every week in clinic who alert me to side effects they are experiencing. Many of these side effects can be addressed. For the majority of CML patients, with good medical management, individuals can not only survive, but have a good quality of life. I was concerned by the number of posts I saw that seemed to indicate otherwise. I urge patients to please talk to their medical providers about side-effects and other concerns so they can help. I also want to assure the community that my lab continues to work on CML in an effort to find better therapies and ultimately a way for all patients to safely stop treatment.

I also encourage people to recognize that there are many different perspectives. Every person’s cancer journey is different. We need to embrace these perspectives. Those who feel cure is the right word for their experience should be as respectfully treated as those who do not.

We want to be transparent that we plan on retaining our website and tagline, onedown.org. This idea is core to our goal of funding research. With Gleevec, we’ve created a life-saving treatment, and we want to discover more Gleevecs for more cancers. We want to move the conversation from cancer awareness to making cancer the victim. To do this, we must let people know that there has been a significant victory in that battle, regardless of the word one uses to describe it. We hope this is a position everyone can support.

Sincerely,

Brian J. Druker, MD
Director, OHSU Knight Cancer Institute"


Thank you, Dr. Drucker

Thursday, May 8, 2014

What Cured Means to Me

Such wonderful news! We must be off to see the wizard, the wonderful wizard of OZ! The breaking news that CML is “Cured” can be likened to the wizard, in the “Wizard of Oz.” After traveling many miles down the yellow brick road, through many trials and tribulations, Dorothy finally arrives in Oz; and what does she discover? She discovers that the “Great and Powerful OZ” is nothing more than a broken down old man, hiding behind a huge façade.



For those of us living with CML, the word “cure” (restoring one to good health) would mean that our cancer was eradicated; we would be able to live our life, without a daily dose of medication. It would mean that we would not have to endure the continual and often debilitating side effects that are a part of our everyday life and it would mean that we would no longer have to have our chronic cancer monitored, every three months. Yes, every three months we go through a two to three week “waiting period,” wondering whether our miracle drug is still working; or not.

How would you like to be checked every three months to see whether your cancer is being held at bay, or if it is once again taking over your bloodstream? Fact of the matter is that these drugs have only been treating CML for the past fifteen, or so years; we do not even know how long they will continue to work or what other damage they may be doing, to the rest of our body.

The word chronic means constant; habitual; continuing a long time or recurring frequently; and having long duration: nowhere in this word, do I see an opening for the word cured; I wonder if a cure is ever really found, that they would have to rename CML; because if we were ever “cured,” the diagnosis of chronic myelogenous leukemia, would no longer fit the bill.

In my opinion, any time someone is undergoing continual treatment to manage their disease, be it cancer, diabetes, asthma, Parkinson’s or others, they are undergoing treatment, living with, not cured of their ailment.
I find the statement to be insensitive and misleading and it concerns the heck out of me; if we are already being considered “cured” is this the end of our road? Is the hope of a “real” cure no longer on our horizon? Must we continue to limp through life, often in so much pain that we cannot function normally, with the dark CML cloud floating above our head, waiting for it to unleash the storm?

Must we accept the fact that this is all that there is and give up the hope that we may someday be able to say, “I am a survivor! I beat CML, I am CURED!” AND “I no longer am in treatment; I got to ring the bell!” I want to ring the bell; I want to put a lid on it! I want to be cured, I want to be done and I don’t want to be angry at those that really are trying, to make a difference.

I believe that OHSU Knight Cancer Institute means well but needs to change their campaign. I suppose that in some weird way, that even negative attention, if it raises money for cancer research, is better than no attention at all.

I am having a difficult time wrapping my head around this whole idea and campaign, and my mind is flying in so many different directions that I am certain that you will hear more from me, on this subject.


Until then, try and remember that the yellow brick road really is a journey; a journey that is fueled by hope; something that all of us living with CML have; we have HOPE!

Do not allow this campaign to steal it from us!

Tuesday, May 6, 2014

When Your Oncologist is States Away!

As many of you know I live in Boise, Idaho and my oncologist practices medicine in UCLA. (Los Angeles, Ca.) I am one of many, who actually travel a long distance to consult with a CML specialist. I see him four times a year and so far, this has been sufficient.

The unfortunate thing about having an oncologist far away, is that by the time my PCR results are available, I am typically back in Idaho; most of the time this has not been an issue, as my PCR results have been “good,” but my latest test showed a remarkable increase in the Bcr-Abl gene. Our greatest concern is that the PCR continues to rise, despite my increased dose of Sprycel.

Since I am not scheduled to see my oncologist again until August, he is sending an order for a PCR test to be drawn, a month after being on the increased dose, to a local blood draw center; my blood will then be sent to the lab in California, to be tested. Once the results are read, we will determine our plan of action. Hopefully I will be back on track and there will be no further need for concern.

While it would be ideal to have an oncologist right down the road in Boise, I feel that the expertise of a CML specialist is in my best interest, so I will continue to travel to see him. Luckily with all of the medical advances, not to mention the advances in transporting blood, I am able to have my blood drawn here, and tested there. I am also blessed to have my oncologist available, by email, whenever I have questions or concerns.

I lieu of my recent test results, I have considered consulting with a local hematological oncologist to see whether or not he would be willing to work alongside my primary oncologist, in order to have someone close by, in case of an emergency; I know many who have gone this route and it seems to work out well. I fee l that it is advantageous to have someone close in distance, but it is also advantageous to have a CML specialist on your side, too.


I think my next post will be the Pros and Cons of choosing an oncologist!

Monday, May 5, 2014

A Blank Mind!

Some days my mind is just blank; it cannot think, it cannot process, today is one of those days. Since I have no immediate obligations that I must attend to, I think that I will spend the day bouncing from one task to another.

What I will do however is make a list of my “favorite things” since I am unable to get the song, “When the dog bites, when the bee stings, when I'm feeling sad….” Out of my head!

                                        
  20 of My Favorite Things

1.      My Family
2.      My Friends
3.      Dancing
4.      Flowers
5.      Gardening
6.      Baking/Cooking
7.      Reading
8.      Traveling
9.      Snorkeling
10.  Singing (in the privacy of my home or car)
11.  Sunrises and Sunsets
12.  Thunderstorms
13.  Home Decorating
14.  Knitting
15.  Sewing
16.  Painting
17.  Writing
18.  Campfires
19.  Puzzles
20.  Games

Wow, I feel better already; I think I will hit the treadmill for my obligatory twenty minute walk and work on the great room makeover!


Wishing you all a great day!


Sunday, May 4, 2014

Compartmentalizing Cancer

Compartmentalization is a tool, which we often use as a coping strategy or defense mechanism. It helps us sort our life into manageable categories, enabling us to deal with each and every one. I believe that we all do this, sometimes consciously other times subconsciously. We go through our daily lives dealing with the task that is in front of us; the one that requires attention; right now. Everyday tasks happen effortlessly, other tasks, such as cleaning out the garage, or planting the garden must be put into the mix of “What do I wish to accomplish?” so that their turn will eventually find its’ way to the top of the list. You will open that compartment and deal with the contents.

Cancer has its’ very own compartment that once opened, is filled with many additional compartments. Some of the compartments that fill the cancer box are fear, treatment, side effects, complications, triumphs, fatigue, pain, insurance, oncologists, money, time, change in appearance, change in lifestyle, the stigma of cancer, guilt, worry, frustration, anger, joy, gratuity, life and death. As a person living with cancer knows, you cannot possibly visit all of these compartments at the same time, or you would just likely jump off of a bridge; you must take each and every one of them separately, and deal with each and every one that arises, when the time comes.

Many people that are diagnosed with cancer eventually are cured; they are fortunate to be able to close many of the cancer compartments and only revisit them on occasion. They become part of their past, something that will always be there, and will have changed their lives dramatically, but they will no longer have to open those compartments on a daily basis.

Chronic Myelogenous Leukemia has yet to reach the status of cured. CML is a blood cancer that is chronic; chronic meaning that many, many sufferers will have to visit many of the cancer compartments, on a daily basis; and this sucks! My over-exuberant, positively optimistic outlook on life lives on, but sometimes I get so sick and tired of the speed bumps and compartments!

Having CML is not something that I dwell on, but it is something that I am reminded of every single day. I am reminded every time I stand up; how I am reminded when I stand up is by pain. How I compartmentalize it is I know that as I start moving, I will adjust to the pain, and I can put a lid on it.

I am reminded daily by fatigue; have a cup of coffee and put a lid on it! I am reminded when I look into a mirror; I am pale and look like someone I do not know; avoid mirrors and put a lid on it! I am reminded by doctors’ bills and insurance; deal with one a day and put a lid on it. I am reminded by a poor test result; reschedule and put a lid on it. The list goes on and on and on; if I were to dwell on the big picture and consider that this is the way it is going to be for the rest of my life, or until a cure is found, I would probably go cray-cray.

Instead, I choose to compartmentalize the cancer; I make a conscious choice to deal with only the things that need attention; I try to keep a lid on the rest. I know that this can lead to a false sense of security, and I also know that I should not keep the lid on so tightly that I miss warning signs that should be addressed, but I also know that in order to live my best life, I must only deal with things that are imperative; and compartmentalize the rest.

That being said, here are a few suggestions that may help others, that are living with a chronic cancer, or other condition.

                             Guide to Compartmentalization

1.     Compartmentalize: Isolate your challenges.
2.     Focus on one challenge at a time.
3.     Make some progress on each compartment, before moving on to another.
4.     Once you have made some progress, you may then open another compartment.
5.     Close the compartments that you managed.
6.     Do not allow an unworthy concern to fill a compartment.

Compartmentalization is a coping mechanism that may help you adjust to your new life. Living with cancer is a challenge for us, and for those around us. The challenge often changes on a daily basis, so being as prepared as we can, will hopefully help us all, to live our best life.


Saturday, May 3, 2014

Yesterday Was My 55th Birthday

I am beginning to realize that no matter how many birthdays that we have celebrated; our inner being remains the same. Our paths may change but the core of who we are does not. As we age, I believe that our convictions become stronger, and our desire to fulfill our journey may strengthen, but deep down inside, we still have the same hopes and dreams, fears and desires. We still have a strong will to live our life, and often, the only thing standing in our way, is the one thing that invariably DOES change; our bodies!

Those daggone things that carry around our very beings, while fulfilling our lives, begin to wear down! They get old and tired and sometimes diseased. We abuse them and often push them to the brink, and wonder why they look and feel so old!  Sometimes we do pamper and protect them, feed them well and allow them the rest they need, but more often than not, we abuse them.

So, I am going to start being a better keeper of my body; I am not entirely sure where or how to start, because I currently DO eat well, am extremely mindful of any overindulgence, and try to exercise, when able. I have found that living with a chronic cancer makes all of the things that my mind “wants” to do much more difficult.

I need to find a way to accept my limitations while still being able to live my “best” life; this is a great challenge. I always have hopes of grandeur, and maybe that is one of my problems, maybe I need to really accept the limitations and set new goals. Dancing is probably the most difficult arena in which to accept my limitations; in my head, I am able to dance as well as, and for as long as I used to. The fact of the matter is; that simply is no longer the case. I need to accept the fact that “The Old Gray Mare, She Ain’t What She Used To Be!” and move on!

So, maybe if I put this down in writing, I will actually stick to my guns! I am going to make small goals, ones that I CAN fulfill, ones that are not so overwhelming that I cannot imagine accomplishing them on a daily basis; so here goes:

1.       I will walk, continuously, a minimum of 20 minutes per day.
2.       I will only eat three peppermint patties a day!

How is that for a start? I will continue to search for other ways that I can improve my overall health and will keep you posted.

But for now, I want to say that I have had a fabulous 55 years on this planet; I, like everyone have experienced the highest of highs and lowest of lows and feel extremely blessed to still be alive. Thus far I would say that “I have had a great life” and am looking forward to what the future holds.


I want to thank all of you that sent special birthday wishes and let you know that each one of them touched a special place in my heart. Birthdays are a blessing and each and every one should be celebrated!

Thursday, May 1, 2014

Sprycel Sadness

It is funny how quickly one can forget unpleasantness. It has only been three days since I began taking an increased amount of Sprycel. I went from 70 mg a day to 100 mg a day. I was on 100 mg a day for the better part of my three year CML journey, but have been on a reduced dose for the past six months. Apparently my CML took the decrease and ran with it; my PCR took a leap. I have increased the Sprycel and will be rechecking my PCR in two months. Wouldn't it be so cool if there was a lab error?

Anyway, I finally realized that my weepiness and wanting to crawl into a corner and cry, is not the result of the bad news; it is the result of the increased Sprycel. I forgot that Sprycel make me sad! Not really sad in a boo-hoo, feeling sorry for myself kind of way, but sad in a still seeing the flowers, but through a gray cloud sort of way.

Sprycel has a way of dampening my spirits and masking my true, joyful self. I know that this may seem strange, but it is real and now that I have remembered this feeling, I can stop wondering “what is wrong with me!?”

So, on that note, I am changing my Theme Song back to: “You Can’t Always Get What You Wa--ant!”, cause right now I guess I am “Getting what I need!”


What is your theme song?


Bricks for the Brave!!