Playing the Leukemia Card

I don’t know how most people deal with illness and cancer, but my sick and warped family typically deals with it, with an abundance of humor and intermittent pity parties. I know that the very first time I played the “Leukemia Card” I was in the market with my daughter. We were buying yams and they were super-sized. I was holding a bag with three or four in it when the bag broke. My daughter and I watched the yams hit the floor and roll to a stop. We looked at each other and I said, “Well, pick them up! I have leukemia!” We both cracked up and she picked up the yams.

Since that day, I have played the leukemia card on varying occasions; sometimes they were legitimate plays and sometimes they were not. I must say that I had to play it when I mailed my son’s birthday card a week or two late, and STILL have not mailed my daughter-in-laws birthday card; legitimate play. Walking into a room and not knowing why I am there; legitimate. Leaving the water running in the garden for hours and hours; legitimate. Send someone else to the market late at night; legitimate. Missing dance class; legitimate. Asking for help; legitimate. Not being Super Woman; definitely legitimate.

Loosing at Hand and Foot (cards); Well, I tried playing the leukemia card, but no one was falling for it. Loosing dominoes; doesn’t work. Being mean, nasty and angry; nope. Blaming others for your own misgivings or stupidity; certainly not.  Stop living and crawl under a rock or your bed covers; wrong again.

My rule of thumb; do when you can and are able, and don't when you can't. There are many legitimate reasons to play the leukemia card; the trick is knowing when and where to pull it out of your pocket! 

Social Dancing and Awards; Leukemia be Damned!

I feel a bit better after a 3 hour nap and we decide to drag our butts down to pick up my award and placement. I placed fourth overall and received a Gold ranking. While it was certainly not up to par with where I was when I last danced; it was far better than I had anticipated. Look out Portland Dance Festival!

Since I didn’t have to be up at the butt crack of morning the next day; we stayed out and social danced for a few hours. It was so great to dance with all of the familiar dancers’ that I didn’t care if I was wiped out for a few days following the event. I even danced in a Just Dance Country Two Step with Alphonso and a Country Two Step Jack and Jill, on Sunday morning. By the end of the day, it was all I could do to not fall asleep standing up; or burst into tears.

I had pretty much figured that it was going to be a rough weekend, but I guess I didn’t count on the emotional side, as well as the physical side, of being there. I was completely drained and could hardly wait to go home. I wondered just how many days it would take to recover. It totally sucks when there is a tradeoff for having fun and doing what you love. Welcome to my new world; a world in which I have chronic myelogenous leukemia and I cannot do one darn thing about it.

On the upside; we found an “In-N-Out” on the way home. Things are looking up again!

Dancing with Leukemia; Competition Day

We wake up at 6:00 am in order to be in the ballroom by 8:00. This is the first struggle, as I have been sleeping a minimum of twelve hours a night since I was diagnosed with leukemia. I am feeling pretty good as I believe that the Neupogen is kicking in, but along with having a bit more energy, the bone pain begins. My understanding is that the Neupogen encourages your bone marrow to produce more white cells; this production can cause you bones to ache. It feels as if you have a toothache deep inside your bones; a boneache. I am counting on the adrenaline of competing to take care of this pain while I am dancing!

I think that the most difficult part of this day is going to be figuring out just what to do with the little bit of hair that I have left on my head. Joe and I have joked over and over that we should just put me out of my misery, shave my head and then stone it for the competition. Since we never got around to doing that, I am left to wrap a teeny, tiny elastic around what is left, plaster  the new tiny hairs that are starting to regrow and like to stand up straight all over my head, down nice and tight, and throw a few shiny clips in it. Totally depressing, but what are you going to do?

We finally head down to the ballroom to warm up; greeting well-wishers along the way. I cannot tell you just how much the dance community has meant to me during the past eight weeks. It has been their overwhelming love and support that has gotten me here today. Thank you!

As I step onto the dance floor to warm up, I realize just how nervous that I am. I am actually shaking. We make it through warm ups and the next thing I know, I am walking onto the dance floor; ready to dance that very first dance that I have been envisioning for the past eight weeks. It doesn’t matter where I place, it only matters that I am there! I smile at Joe, and we dance; walking off of that floor I felt my heart swell with joy. Leukemia may have set up shop in my bloodstream, but it is not going to take over my life. It is not going to steal my joy or my will to live. It is going to find itself hard pressed to continue to try and take me down, but I intend to fight it every step of the way!

Eight Weeks Ago I was in a Hospital Bed Fighting Leukemia; Today I am Dancing at My First Event of the Year!

I won’t tell you that it has been an easy road, and I won’t tell you that it has been fun; but I will tell you that I am thrilled to be here and able to dance. I am not nearly as prepared or as strong as I would like to be, but the fact that I am here at all; is a small miracle. All of the well wishes and prayers from my friends, family and extended dance family have given me the courage and strength to persevere and push through the fatigue and bone pain in order to do something that I love.

I know that the “smart, wise” thing to do would probably have been to not push myself so hard and to just “sit this one out”, but there is something to be said for needing a healthy mind, spirit and soul in order to have a healthy body. Not attending this event would have dampened my spirits greatly. When I was first diagnosed with leukemia, I secretly made a pact with myself. I said, “Self, you are going to get out of here and be well enough to attend LAPD (Los Angeles Dance Premier), you are going to compete and you are going to be OK. You CAN and WILL do it!”

I must admit that there were times that I really didn’t think that it was going to be possible. The very first time that I stepped onto a dance floor after chemo, I was VERY weak and wobbly.  It was very difficult to hold my arms in dance frame. The muscles were practically non-existent and where the jugular catheter was, still hurt like crazy. I had very little stamina and was still a bit short of breath.  Dancing one routine was physically exhausting!

Joe insisted that we only dance 5 routines. A good call, as I probably would have attempted to dance all eight. We left out the most strenuous ones; Polka, East Coast Swing and Cha Cha, although Waltz is probably even more strenuous, we needed to dance it to have this competition qualify me towards World’s.

We arrived Friday evening and checked into the hotel. I was scheduled to compete at 8:00am. After checking in, we went down to check into the event. Running into so many familiar faces was almost overwhelming. So many had been following my story and wishing me well and praying for me; it was what gave me the strength to be here. Being here made me realize just how precious and fragile life can be; your whole world can turn upside down in one single second.

Life is precious and can be short. It is filled with ups and downs, happiness and sorrow, challenges and victories. It is our choice to live our life as we see fit; but my advice to you is to live it to the fullest. Take chances and push yourself; do when you can and accept when you can’t. OK, I may not be the best example of this, but I DID cut down the dances from eight to five! I am here and I am going to compete in the morning!

Joe and I did a quick run through our routines and peeked into a ballroom. I, of course heard music and wanted to dance. Joe, the responsible one, on the other hand said, “No, we are going to bed!”  I turned down my lip in hopes of encouraging him onto the dance floor at least once, but it didn’t work. Up to bed we went and I was asleep within minutes. Imagine that!

19 Days on 100mg of Sprycel; Guess what!

Crying because Mom took the Hot Tamales away!

Well, I had a blood draw a few days ago and I was still hanging at 4,600 white blood cells, 3,560 red cells and platelets at 188,000. I was glad, but a bit surprised as I had been feeling crummy for about a week. I suppose that I was anticipating that they had gone down. I have one more dance practice before the competition this weekend and I really want to feel good.

Fast forward three days:

Today I met with my doctor again. Surprise, surprise! My white cells have dipped to 2,600; reds and platelets are about the same. I just knew that I wasn’t feeling quite right! It’s funny how the drop in white cells affects me; I become more tired and just have an overall unwell feeling. I explain to the doctor that I am going to a dance event regardless; and that I plan on competing. She shakes her head and smiles and then says, “Well, we had better give you another shot of Neupogen (Filgrastim).”  The last time that I had a Neupogen injection I felt quite a bit better within two days. Two days from now I will be on the competition floor. I am keeping my fingers crossed!

On the upside, I also met with my doctor’s assistant. She was actually able to give me a relatively convincing reason as to “why” my doctor wants to keep me on 100 mg of Sprycel  vs 70 mg. She explained that 100 mg seems to be the dosage that not only reduces the Philadelphia chromosomes; it is also strong enough of a dose to prevent the chromosomes from figuring out a way around the drug. In other words, the bad cells are smart little suckers and they can often adapt to their environment and manage to reproduce despite the inhibitor. That is one of the risks of this oral treatment; the possibility of becoming resistant to it.

I guess that I now better understand that the goal is not only to reduce the white cells in my blood; but to eradicate the underlying reason that they are there as well; I can accept my prescribed dosage. The ultimate goal is to have no Philadelphia chromosomes in the bone marrow; thus resulting in a normal white cell count in my blood. Of course, my question to her was, “If my blood keeps dropping so low on the 100 mg dose, does this mean that it is also preventing me from producing healthy white cells, as well?” Her answer, “Good question, I guess that I will have to find out that answer and get back to you.”

So, once again I am a bit confused. I think that I will be seeking a third opinion shortly.crossed!

Nothing Like a Few Fresh Peaches, Flowers, Hummingbirds and the Garden to Cheer up My Mood!

So, this mornings’ post was not written with a very positive attitude. I haven’t been feeling well and I am just growing weary. I guess that I am just going to have to accept the fact that I am being challenged and that my health isn't the same as it used to be.

The sun is shining and it looks like a beautiful day; I have to water the garden so I drag my butt out to the back yard. The very first thing that I hear is the chirping birds. They must have condominiums of nests in our trees because I can hear so many different little chirps from all of the babies. There are butterflies flitting here and there amongst the flowers and the tomatillos have doubled overnight. Walking through the garden takes me forever, as I have to stop and sample the snap peas, attempt to count the tomatoes, marvel at the brussel sprouts and finally pick and eat a peach. It is warm and sweet and smells so good. The sun is warm and the air is cool; a perfect combination.

With my mood already lifted, I mosey on to the front yard. I am immediately greeted by my very friendly, favorite hummingbird. This little guy greets me every morning when I open the curtains or step outside. He is so adorable; he literally flies right up to the window if I am inside or right up to my face if I am outside. He hovers for close to a minute, about six inches from my face, before flitting away. He also lets me know if his feeder is empty, he is a tenacious little guy and always brings a smile to my face. I guess that the next time I am in a cranky mood; I shall just take a walk outdoors and marvel at the miracles around me.

Here We Go Again; 10 Days on 100 mg of Dasatinib(Sprycel)

Me! Wasn't even cranky in all of that snow!

So is it really too much to ask to just stabilize my blood for a week or two? Last week my white cells were good and strong; 9,100 of those little suckers! I am sure that it was because of the boost that I got from the Neuprogen, but wouldn’t it be nice if they just stayed there?

But wait, I increased my dosage of Sprycel from 70 mg to 100 mg even though I had extremely low blood counts on 70 mg. Seems as though I am headed downwards again; white cells 4,500, red cells 3,560 and platelets 187,000. Don’t they know that I only have two practices left before I compete at LAPD (Los Angeles Dance Premiere)? I can’t be tired and dragging ass; I have things to do, places to go, dances to dance and people to see. This leukemia was not on my list and it is really starting to screw with the things that were.

I will see my current doctor one more time and if I do not get the answers that I am looking for or feel 100 percent content, I will seek a third opinion. I truly feel that if you are not happy with your current physician, no matter the reason, then you should seek until you find one that fits your bill. If you are dealing with lifelong treatment, this is especially important.  I think I sound a bit cranky today!

Please sign this petition; It May Help to Save CML Patients Lives in the United Kingdom

So they call it the “United Kingdom.” It doesn't seem so united to patients with chronic myelogenous leukemia that are currently living there. It seems as though The National Institute of Clinical Health and Excellence (NICE) is trying to refuse to recommended 2nd line lifesaving therapy for CML patients who are resistant to 1st line therapy. What that basically means is that once a CML patient becomes resistant to Gleevec, or possibly one of the other drugs used to treat CML; they are no longer eligible to receive the second or third drug treatment; Tasigna or Sprycel, because it simply “costs too much.” You have one chance and one chance only, even though there are other options.

Being diagnosed with cancer is a devastating and scary event. When you hear the words, “You have leukemia,” your world turns upside down. When you are told, “There is hope, there is this new medication that will hopefully put your cancer into remission,” you breathe a sigh of relief. You have many questions and fears, but now you also have hope. You currently have several options, because there is not just one of these miracle drugs, but three. Three, just in case one of them stops working, you still have two more options.

Patients in the United Kingdom are threatened with this option being taken away from them. NICE claims that it is just too expensive to offer the second and third drugs to a patient that has become resistant to the first drug. Just imagine for a moment what that must be like. Without the second and third drugs as an option, you will die. You will die knowing that there is hope dangling right in front of you. If you lived somewhere else, this option would be open to you; you could continue to live your life. The people living in the UK are facing just that tragedy.

Please take two minutes out of your life to sign this petition; In hopes of giving my fellow CMLers’ a chance to live! This proposition is preposterous! They only have until Weds. at 5 pm, so please sign now!

Treatment of Chronic Myelogenous Leukemia

In my case of CML, I was admitted to the hospital and treated with cytarabine, a chemotherapy drug and leukapheresis; a process used to eliminate white blood cells. Not all cases of CML must be treated in this fashion, but because I was diagnosed with an extreme amount of white blood cells in my blood, there were other concerns. When I was diagnosed, I had 382,000 white blood cells; normal range is between 4,000 and 10,000. They needed to reduce the amount of white blood cells in my body quickly to avoid a stroke or other complications. They were also concerned that I might be in blast crisis; a very serious stage of the disease.

Once they managed to get my white cells under 100,000 they sent me home with a prescription of Dasatinib; commonly known as Sprycel. Sprycel is one of the second- generations of a drug that includes Imatinib (Gleevec) and Nilotinib ( Tasigna). These drugs were developed in 1998 and have changed the outcome of chronic myelogenous leukemia drastically. Before these drugs were created, certain death was the prognosis for people that had CML. Since the discovery of these drugs, patients living with CML are actually able to do just that; live. These drugs allow patients to manage their leukemia with the hopes of putting CML into cytongenic and molecular remission. There is no current cure for CML, but there have been many significant treatment advancements in recent years.

The way that these drugs work is by blocking the abnormal protein called “BCR-ABL tyrosine kinase inhibitor (TKI).” The goal is to stabilize the disease and make the side effects manageable enough for patients to lead a relatively normal life. All of these drugs are lifesaving, but also very, very expensive. Currently you must take them for the rest of your life. Along with the side effects, your CML may become resistant to them; thus changing the course of your treatment.  None of us know the truly “long term” side effects of these drugs as they are relatively new. Typically the side effects outweigh the benefits. So, for now, I will be taking Sprycel for as long as Destination Access provides it to me and as long as my body continues to respond in a positive manner. Thank God for modern medicine and research!

So, Just what is a Philadelphia Chromosome?

Until recently I had never heard the term “Philadelphia chromosome.” It wasn't until I was diagnosed with chronic myelogenous leukemia, earlier this year, that it became a part of my vocabulary; it has now taken temporary control of my life. This condition is not something that I was born with or something that I can, or will pass down to my children. It is not contagious; so you needn't run when you see me coming or wear garlic around your neck. It is my understanding that CML is just kind of a fluke. Lucky me!

There is some evidence that people treated with a high dose of radiation may have a small increase in risk, but most people treated with radiation do not develop CML and most people with CML were not exposed to high-dose radiation. So, go figure; sounds like they really just don’t know the cause.

Normal cells have pairs of chromosomes that are numbered 1 to 22, and a pair of sex chromosomes; XX for females and XY for males. Chromosomes are structures in the cells that contain genes. The genes give instruction to the cells.  This is “my” understanding of what the “Philadelphia chromosome” is; for some reason unbeknownst to all, a small piece of chromosome 22 breaks off and saunters its’ way over to chromosome 9. It then decides that it would like to stay there and hang out with chromosome 9. So it attaches itself there and sends a piece of chromosome 9 on over to keep chromosome 22 company.  

When Joe and I are teaching dance classes he is constantly saying “rotate” to the students. I told him that it must be his fault that I now have leukemia, because he said rotate just one too many times. I think that my chromosomes must have heard him and just decided to rotate!

  

The break on chromosome 9 involves a gene called Abl and the break on chromosome 22 involves a gene called Bcr. The Bcr and Abl genes combine to make the CML causing gene called the Bcr-Abl gene. There doesn’t seem to be any rhyme or reason as to why this occurs; it just does. This Bcr-Abl gene produces a dysfunctional protein called “BCR-ABL tyrosine kinase”; this leads to the abnormal regulation of cell growth and survival and is responsible for CML. Think of it as a faucet that is constantly in the on position. It is on and making immature white cells that are crowding out the good white cells as well as the red cells and platelets.

A Bit about Marrow, Blood and Blood Cells

Understanding these terms will help you to understand chronic myelogenous leukemia. We have all heard the term marrow before, but just what is it? Marrow is present in our bodies inside of the bones where blood and immune cells are made. It is the spongy center of your bones.

Blood cells are made in the marrow and begin as stem cells. The stem cells become red cells, white cells and platelets in the marrow and then they enter your blood stream. Interestingly enough, when we are newborn, all of our bones have active marrow. When we reach young adulthood, the bones of the hands, feet, arms and legs no longer have functioning marrow. Adults’ marrow is functioning in the spine, hip and shoulder bones, ribs, breastbone and skull. I found that fascinating!

Platelets are very important as they are what stop bleeding.  They are small cells about one-tenth the size of red cells. They actually form a plug or scab to prevent our bodies from excessive bleeding.  They actually stick to a torn surface of the damaged blood vessel and form the clot; thus allowing the vessel wall to heal. They also release growth factors that stimulate wound repair and new vessel formation. The low levels of platelets often found in leukemia patients are what cause the bruising. My bruising was accompanied by large lumps where the bruising occurred. The “lumps” were caused by the massive amounts of white cells in my blood stream.

Our red cells carry oxygen around our bodies. My low level of red cells was what caused me to feel tired and short of breath. The lack of oxygen getting to my organs was the culprit; I also was very pale. The red cells actually make up less than half the volume of our blood. The hemoglobin is a protein that actually picks up oxygen in our lungs and delivers it to the cells all around our body. It then picks up carbon dioxide and delivers it back to our lungs where it is removed when we exhale.

White cells are our warriors! They fight infection. There are two major types of white cells; the neutrophils and monocytes; they are the germ-eating cells, and the lymphocytes. They can actually ingest and kill bacteria or fungi. Unlike red cells and platelets, they have the capability to leave the blood and enter your body’s’ tissue to attack invading organisms and help combat infection. The problem with the type of leukemia that I have is that I have an over abundant amount of white cells, but they are unhealthy mature cells. They are taking over my blood stream in force and crowding out the healthy white and red cells, as well as the platelets.

The lymphocytes are mostly found in the lymph nodes, spleen and lymphatic channels, although some enter the blood. They are a key part of the immune system and include these three major types; T cells, B cells and NK cells (natural killer cells).

We also have plasma in our blood. Plasma is the liquid part of our blood and is mostly water. It also has some vitamins, minerals, proteins, hormones and other natural chemicals in it.

CML- Bad Blood!

CML is a type of cancer that begins in the marrow. It is primarily diagnosed in adults; but there are children living with CML, too. CML begins with a mutation to one single marrow cell. That single changed cell multiplies into many CML cells. The change takes place on chromosome 22 and is known as the “Philadelphia chromosome.” It can also be called the “Ph chromosome.”

Here is some trivia for you: The Philadelphia chromosome was first discovered and described in 1960 by Peter Nowell from University of Pennsylvania School of Medicine and David Hungerford from the Fox Chase Cancer Center's Institute for Cancer Research and was therefore named after the city in which both facilities are located.

Five Days on 100 mg of Sprycel; Is This Why My Hair is Falling Out?

Cancer patients are cracked in the head!

Well, it has now been five days since increasing my medication of Sprycel. The only real difference that I have noticed is an increased fatigue and hair loss. The hair loss could be from the chemotherapy that I received six weeks ago or the combination of both.  It hasn't started falling out in handfuls, but falls out more and more every day. At this point, I wish it would just make up its’ mind; either all fall out or just stop.  This little bit here and little bit there is really annoying! I feel like a shedding puppy.

Seems as though the increase hasn’t negatively affected my blood count; at least not yet. I believe that the Neupogen has helped to increase my white blood cells to the highest that they have been since being diagnosed with leukemia. The white cells are a whopping 9,100….whoop, whoop! The reds are still low at 3,760 and the platelets are in the normal range at 167,000. What will another week bring?

Tonight is our regular Country 2 Step dance lessons at The Borderline. I also have a private lesson with Joe to begin to get ready for LAPD; Los Angeles Dance Premier. We compete on April 9, 2011. While I understand that many of you will think that I have rocks in my head, I need to do this for myself. I need to do it to prove that this dag-on cancer hasn’t gotten the best of me and that I am not going to let it! This competition will not be against the other competitors; this one will be against the leukemia.

Typically we dance eight dances.  This competition we will be leaving out the most strenuous dances, so that I will not have to be peeled off of the dance floor. Considering how little we have danced this year and how wobbly and weak I am; this is going to be a huge challenge. My goal; Compete in five dances and do the very best that I can. I have three one hour practices to pull it together.  Hopefully I will still have enough hair on my head so that we won’t have to stone it!

Brothers and Sisters; And Everyone in Between

I just bawled my way through an entire episode of “Brothers and Sisters.” For those of you that watch this show, you can relate for those of you that don’t, let me explain. This show can be a little annoying at times; just as in real life. It is a show about family dynamics; the good, the bad, the ugly and the beautiful.

Maybe I am overly emotional today because my fifth grand child was born yesterday and I wasn’t able to be there. I was present when all of my other grand children were born and the longing in my heart to hold and welcome this new addition to our family is overwhelming. He is a beautiful baby with his entire life stretched out before him. He has begun his journey and will not face it alone. He has a village of loving and supportive people to guide him through his life, share in his joy and accomplishments; and to pick him up when life is unkind or confusing. He is a lucky, little boy!

Back to the show; this episode is the epitome of family relationships. It displays that while there is often contention, that contention is balanced by acceptance. Where there is uncertainty, there is also hope. Every family often disagrees about practically everything under the sun, but when the sun goes down, we are all still family. We may not have a perfect family, but they are ours. They are extensions of who we are, where we came from and where we are going.

Sometimes life is kind, sometimes it is not. We often face challenges that seem insurmountable and daunting. When you find yourself facing a mountain that is difficult to climb, remember to reach out to your family and allow them to support and encourage you along your way. Don’t spend your life being angry or holding grudges, keeping a scorecard of misgivings is not a good idea. When I speak of family, I am also speaking of my friends. We have no choice in our genetics, but we do have a choice in our families.  Sometimes we choose them, sometimes they choose us.

Regardless of how your family tree has grown its’ branches; embrace them. Be grateful to have them in your life. Forgive graciously and love and laugh abundantly. None of us know how or when our journey will end, but please make the most of it while you are here!

Today I Increase My Dasatinib (Sprycel) Dosage

Shortly after taking my meds for the day the doorbell rings; it is the Fed-Ex guy with my new bottle of life saving drugs. Tomorrow I will begin taking 100 mg of Sprycel instead of 70 mg. I am still reluctant to do so, but am trying to be the best patient possible in order to put this leukemia into remission.

I am hoping that my recent decline of white cells, while taking the lesser dose, was just a fluke and that my body will be able to maintain and hold its’ own on this new dose. It is still less than the original prescription on 140 mg. Over the lips and over the gums, look out body; here it comes!

Two Shots of Filgrastim (Neupogen) and I Feel Human Again

After waiting for 4 hours!

Fortunately, Joe had a long weekend and was able to take my cousin to the Fly Away very, very early the next morning. I know that she will hate me saying this, but I feel so horrible that I was such a mess while she was here. It was so good to see her despite my own miserable self! I think I drug myself out of bed around 11:00 am that morning.

I had another appointment at City of Hope that afternoon for my third injection. I was very lucky that I had a chauffeur to drive me, as it is 37 miles one way. Once we got there we checked in at the main registration desk and were corralled to the blood draw waiting area.  My blood was drawn pretty much on time, so we had about 45 minutes to wait before seeing the doctor; or so I thought. After waiting about an hour and a half, I went and checked with the reception desk for that area. She told me that my “one” o’clock appointment was a “three” o’clock appointment. I told her no, it was not; there was a mistake. I had a voicemail, still on my phone confirming such, so I made her listen to it. She rolled her eyes and said that she would let the doctor know. Another 45 minutes and we were finally called back to an examination room. Ugh, try and be nice when you are worried and irritated!

My doctor finally came in, all smiles and told me that my white blood cells were back up in normal range and that I didn’t need another injection of Neupogen. Once again, a little goes a long way in my body; doesn’t anyone ever listen! While I was grateful that my blood work was mostly back in the normal range, I was annoyed that we had to waste the entire day to find out. I could’ve had blood work drawn five minutes from the house and saved us the trip. I am learning the ropes and I won’t be forgetting this lesson any time soon.

This doctor wants me to start taking the 100 mg of Dasatinib (Sprycel) as soon as I get them and to continue to get weekly blood draws. Today my white cell count is 6,200; the highest that it has been since I have begun taking Sprycel. My reds and platelets are still low. Maybe all I needed was this boost to get me back on track; time will tell. I still  want an answer as to why I should start taking 100 mg of Sprycel when 70 mg sent me into a ditch; especially since it seems as though my body is not able to maintain a healthy blood level on its’ own on the 70 mg dosage. I suppose that we shall just have to wait and see.

We went home and spent some time in the garden. It was really nice to be home and feeling better. I am starting to feel as though Palm Springs is cursed; it will be awhile before I visit again!

The Mad Dash for Filgrastim (Neupogen)

My car is finished and as I get in and turn it on, something begins to squeal. Oh Murphy, please go visit someone else. I have 45 minutes to get to Palm Springs; even with traffic co-operating that is a stretch. Once upon a time, a long time ago, you could make the 13 mile trip in 10 minutes. That of course was prior to all of the fools that have decided to make this wretched, hot desert a permanent home. Don’t they know that even the Indians left for the summer?

UGH! People everywhere, driving below the speed limit, taking their half out of the middle of the road, stopping for green lights. The unkind words that sputter from my usually kind mouth are; Damn Blue-hairs! They cannot even see over the dashboard; the only thing you see when you pass them are the blue-hairs and their knuckles. Yes, someday I hope to BE a blue-hair, but I think that I will rock orange-hair to symbolize leukemia; I also hope that I have enough sense to stay off the road!

Anyway, I pull up to the garage and the mechanic looks at me like, “What?” I say, Can’t you HEAR that?” He says that it is the AC belt and that he can have it replaced in 15 minutes. Great, let’s just add another $60 to the $425 bill! I agree and tell him that I HAVE to be in PS before five. He says that I will make it; as a precaution, I call the office to let them know what is going on. They agreed to leave the door unlocked until 5:15.

Now, I am normally a very easy going person, I rarely get impatient or frustrated, but this situation was trying my nerves. That coupled with the fact that I feel like crap and look out! The mechanic didn’t tell me that he had to wait for someone to bring the belt to him. I told him to forget it and just put the car back together. He said that he couldn’t, because he had already thrown the belt away. At this point I am a very cranky girl. I played the leukemia card and told him he had better figure it out! Luckily the belt arrived and he had it on my car in record time.

I literally flew up to PS hitting all of the green lights. I’m guessing that I must have left Murphy in the dust! I make it to the office with literally one minute to spare. The nurse was very nice, gave me my shot and told me that I had to be back in the morning for another one. She also said that I needed two more after that. I told her that they would have to figure out how to transfer the next two injections to the City of Hope, as I was going home in the morning come hell or high water. KK had to catch a plane the next day and I wanted to go HOME. The last time I was here I ended up in the hospital with leukemia. I was already dreading calling Joe and telling him that I wasn’t coming home tonight. I needed to get home. I think that she was a bit annoyed by this, but I didn’t care.

Filgrastim (Neupogen) is a man-made protein that stimulates the growth of white blood cells in your body. As I found out last night it makes your bones ache; it kind of feels as though you have a toothache, deep inside your bones; especially my thighs and sternum. Hopefully the ache is just a confirmation that my bone marrow is doing its’ job. With a shot in the arm I was back down the valley; yet again.

 I am frazzled and exhausted and so sad that this week had to be the week that my poor cousin was here. I had “plans” and someone had heard about them; they simply said, “Oh, no you don’t!” Once again I was back at my mother’s, eating and sleeping. In the blink of an eye, I was back at the doctor’s office in the morning getting another injection and then KK drove me home. No favorite lunch or breakfast place just Jack-in-the-Crack drive-thru on our way. Mr. CML you win this round.

Leukemia the Beast!

Morning came much too early and I feel feverish. I slide the comb through my falling out hair and the toothbrush across my teeth. I stumble down the hall, find my father and get into his new fancy SUV and head to my poor broken down Toyota. I called Triple A on the way and then Mobil station, hoping that my friend still owns it. As luck would have it, he did so I at least knew where to have the car taken. Of course Triple  A tried to jump the car and it started right up. Don’t you just love it! The sucker wouldn't even turn over last night and one little jump and it is running normally. My guess is that it is the alternator.

 I drive the stupid car to the gas station and my Dad follows me. They said that it should be ready by four. My Dad plans to take me to Palm Springs for my blood draw and doctor’s appointment until he realizes that we also have to stop and pick up KK at the hotel. He is just getting over surgery himself and isn’t feeling all that well, so he relents and allows me to drive my mother’s “fancy” car. Now I would have preferred to drive HIS car, but the pressure would have been way too much; and besides, it would have had to be a life or death situation for that to happen! Funny how at 52 years old I am still nervous to borrow and drive my father’s cars, even though a have a near perfect driving record.

I head to Palm Springs and make it just in time. Now I have been coming to this facility for the past seven years; ever since I had surgery, removing ovarian tumors. They were borderline tumors, meaning that they weren’t yet cancer, but they weren’t normal either. I saw Dr. Mark Genesen every three months for years and now see Dr. Han every six months to make sure they (the tumors, not my ovaries) haven’t returned.  He is the doctor that diagnosed my leukemia. It is very familiar place to me and never created any anxiety whatsoever once my tumors were removed. I never even imagined that I would one day be visiting the other side of the hall; the side where the “other” cancer patients would disappear behind the door in the corner; for chemotherapy. The words: “Desert Hospital Comprehensive Cancer Center” now held a new meaning. I was lucky enough to need the medical staff on both sides of the hallway; Lucky me!

I check in at the reception desk and the gal says, “Dr. Han doesn’t have you on the schedule.”  I reply, “I know, today I get to see Dr. Camacho, I have leukemia now.” She was as floored as I was when I heard the diagnosis.  They call me right in and draw my blood. I return to the waiting room happy to see a new and different puzzle on the table. All doctors’ offices should have a puzzle or two lurking in the waiting room to distract the patients from their long waits. It is always good to distract a cancer patient whenever possible. If you are lucky enough to find a puzzle in your waiting room, just be sure to use hand sanitizer before and after touching the pieces. This is to protect others and ourselves.

When I was finally called back to see the doctor, they weighed and measured me, checked my blood pressure; it was low, and my temperature; it was slightly elevated and sent me into the exam room to wait some more. Dr. Camacho quickly came in and had a puzzled look on his face. He said, “So, are you still taking 140 mg of Sprycel per day?” I said, “No, I have been taking 70 mg for two weeks.” He questioned me again and said, “Really, 70 mg?” I said, “Yes, really; why?” He said, “Well, your white cells are down to 1,500.”

Now, if you remember, I was concerned about 140 mg being too high a dose for me; seems as though 70 mg might be too much, too. He was absolutely shocked and told me to take one tablet every other day and he would consult with my other doctor at City of Hope. He also said that if my temperature rose to 101 degrees that they would throw my butt back into the hospital and test every bodily fluid that I had. It seems that my red count and platelets were down, too. No wonder that I have felt like total crap for the past three days. I wondered if it was because I had over done it, or if it was simply my body adjusting to the medication and the leukemia.

I head over to the hotel to pick up my cousin. She isn’t quite ready so I make a few phone calls and check on my car. It is the alternator and they should still have it done by four. KK and I head up to my folks for lunch, a visit and another nap. This is getting old! My Dad takes me down to get my car and leaves me there. I get a call from the doctor’s office and after consulting with my current doctor, they have decided that my low white count warrants four shots of Neupogen; an injection to help increase the production of white blood cells. It seems as though it must be given in a series, so I now must stay in the desert at least one more night. Oh, this is becoming a very bad pattern!

Leukemia Still has the Upper Hand; The Downward Spiral Continues

The drive to Palm Desert is uneventful, the traffic was good and we made it to my mother’s in record time. We ate lunch and I was done! I hit the guest room for a much needed break and a nap. The main reason for my cousins’ visit was to surprise my Mother. She hadn't seen her in a very long time and really needed a “favorite Auntie” visit; I napped and they visited. So as not to impose too much upon my parents, KK booked a room at a fancy, shmancy hotel in Palm Springs and we had planned on spending the nights together up there; girl time, just me and her. I had planned to take her to my favorite haunts for lunch and breakfast and to relax a bit at the pool.

I awoke a few hours later and was still just wiped out. Of all weeks to feel crummy; last week I felt so good. My sister came up to see KK and we sat outside and visited. I was feeling so horrible that it was challenging to even focus on what everyone was saying and I was having a very difficult time just keeping up with the conversation. It was as though I was underwater and everything was foggy, yet extremely loud.

It was becoming increasingly apparent that I wouldn’t be joining my cuz in the shwanky hotel again tonight, as I felt as though I was going downhill even further and faster than I was last night. I didn’t want to disturb her with my getting up and down and tossing around all night long. I was so disappointed and felt just terrible to be ruining our plans. We had dinner then my son and cousin both left; I had a cup of tea with my mother and went to bed. I slept 14 hours straight and felt a bit more human when I woke up.

The weather in Palm Desert this time of year (March) is marvelous, so I set up camp on the porch by the pool with a cup of tea and my computer. I had some work to do and hoped to get it done before KK arrived from the hotel. We didn’t really have any plans other than picking up my son around three o’clock, so I figured I would use my time and energy wisely and get some work done. It is so difficult to be the cruise director when you aren’t feeling well.

The three of us went to lunch at our favorite yogurt shop and I was already beginning to decline. Once again I figured it was best to stay at my mothers and let my cousin enjoy the hotel on her own. She also felt as though she might have a little something and didn’t want to pass any germs to me or my mother; especially now that I seem to be doing a good job of going downhill all on my own. What a bunch of invalid losers! I am so used to going a million miles a minute and never letting anything slow me down. It looks as though CML might win; this time.

I had a routine blood draw scheduled for the morning and also made an appointment to see Dr. Camacho. I had this long lump in my arm and it was red and swollen. When it began to swell, I marked the length of the vein with a marker to monitor its' size and or movement. I knew that it was a vein that I had had an IV in and it had become inflamed during a chemo treatment. It had been fine, but now it was inflamed; hot, swollen and very sore. It felt like a hard straw under my skin. Since my folks are in Palm Desert and the hotel and my doctor are in Palm Springs, I decided it would be better for me to drive my cousin up to the hotel so that I would have the car in the morning to get to the doctor’s; that way she could get some much needed rest and maybe even enjoy the pool.

My son rode with me, and on the way back to PD, my headlights started to dim. Next I noticed the dashboard lights were dimming, too. We had to stop at a red light and the car engine began to slow down; all lights dimming. Great, just what I need; to breakdown on HWY 11 at eight o’clock at night feeling like crap!

I push on the gas pedal and the car slowly picks up speed. After about 30 seconds we are cruising at the speed limit and praying for no more red lights. As luck would have it we hit another red light; we spit and sputter to a stop and I throw the car into neutral and put my foot on the gas. Our jump start off the line was even slower this time and I wasn’t sure that we were ever going to get going. Luckily we do and I get into the right hand lane and stay there. We were finally getting close to the turn off to my mothers and we hit another red light. I could tell that we would be toast if we stopped, so I threw caution to the wind, looked quickly both ways, and ran the light. I made a right hand turn and literally coasted into a parking lot. The car died and I forced back tears. My son said, “Great, now what are we going to do?” The forever pessimistic teenager!

Me and my son; 2008

I said, “Call your father and have him pick us up and take us to Nonny’s. I will deal with the car in the morning.”  I had had enough for one day and I was falling fast; I and this body could take no more. I was so grateful that I was driving the car instead of my cousin; talk about kicking the dog when it is down! I finally get back to my folks house at nine p.m. and my Dad says that he will get me up at 7 am so that we can get the car taken care of BEFORE my 10 am doctor’s appointment. Oh, joy……going to bed, not enjoying the fact that leukemia has the upper hand right now, this totally SUCKS!  

The Beginning of the First Setback Since Being Diagnosed with Leukemia

I have just completed a full week on 70 mg of Sprycel, instead of 140mg. I have more energy and am now only sleeping 12 hours a day; no nap needed! This is very good news, as my very favorite cousin is flying in from Maine, I am picking up my son and his friend for the weekend and then we will all be going to visit my folks. Great stuff planned for the week, I am so excited to be able to spend some time with my cousin, as I haven’t seen her in over three years.

I was supposed to pick up my son on Friday afternoon, but Murphy got involved and that did not happen, so I made arrangements with my sons’ father to meet me half way Saturday morning. I got up earlier than normal so as to make the 11 am pick-up time. I got a call from my son and was told that his Dad was still on the golf course. This, under normal circumstances, would not be a problem. Under my new CML circumstances it was.

You see, I had planned my entire day, in such a way that my body would be able to handle all that was required of it. It was my biggest day yet; I had planned to pick up my son and be back home in time for a 2 hour nap, thus allowing me to drop off my son and his friend at a concert in Hollywood, pick up my cousin at the Fly-Away, visit with her for the evening and then still be coherent enough to pick the boys BACK up after the concert, late that night. I knew it was going to be a very long and taxing day, but thought that with squeezing in a nap, I would be able to handle it.

My Cousin Kathy and My Mom

Since the pick-up time had been delayed by several hours, and I was already up and ready to go, the nap was eliminated from my plan. I was irritated and concerned. I really considered playing the leukemia card and making his dad bring him all of the way to me, but I didn’t. Looking back, I should have done just that. By the time I pick the boys up and get back home, I have just enough time to feed them and get back in the car to drive them into Hollywood for the concert. I turn around and head back home. I have about half an hour before picking up my cousin. I am so excited to see her that I couldn’t have slept even if I had tried.

Seeing her at the Fly Away brought tears to my eyes. She has a heart of gold and is one of the most thoughtful and dearest people that I know. Of course we have so much catching up to do that we are both going a mile a minute. We yakked until approximately 11 pm and I figured that I should head down to get the boys. The last thing that I wanted was for the two of them to be standing on Sunset Boulevard at night; alone. My cousin was gracious enough, despite being on east coast time to come with me. By this time I am feeling really, really tired and a bit shaky.

Driving through the canyon and down Sunset Strip at night was a challenge. There were cars everywhere and I wasn’t sure what to do. I finally found a parking space in front of an outdoor café a few miles from the House of Blues; and waited for the boys to text me when the concert ended. I let them know that we were there and they let me know that the last band was playing. While we were sitting there chatting and waiting for the boys, I could feel my body getting more and more shaky by the minute. I texted the boys again and it was 10 minutes before they replied. They said that they were on the last song and it would be over in about ten minutes; I was close to tears and told them ten minutes, no matter what. What I didn’t know was that they didn’t have reception where the concert was actually being played and that they were running in and out of the concert to stay in contact with me.

Those ten minutes finally passed and I cursed my body for failing me and for having leukemia. The boys had made plans to go to this concert long before I had leukemia and I didn’t want to be short with them for something that was out of their control. They got into the car so excited and full of youth that I didn’t have the heart to complain to them too much; I told them that I was sorry for being a bit quiet and irritable, but that I just wasn’t feeling well. I could hardly wait to get back home and into bed. Listening to them brightened my spirit, but my body just would not get on-board.

Of course they were starving and wanted to drive through Tommy’s, so I sucked it up and got in line. I literally felt as though I was going to crumble at any moment. I cannot ever remember feeling quite this crappy, it was as though my brain was willing my body to just keep going. Finally we got home around one a.m. and I was in bed less than 5 minutes later. I slept straight through until 11:30. Today was going to be another big day; we were driving back to Palm Desert to see my folks. I felt a bit drained, but thought that I could make the two hour drive and then take a nap. Everyone, load up and let’s get this show on the road!

Dasatinib (Sprycel) Dosage Cut in Half; Results

Last week my new doctor changed my dosage of Sprycel from 140 mg daily to 100 mg daily. Being that Sprycel would cost me over $8,000 per month with my insurance, I have been fortunate enough for Destination Access, a patient assistant program, to supply my medications for me; for now. Of course I have a half a bottle of 70 mg tablets currently lurking in my medicine chest. I asked/told my doctor that I would like to take the 70 mg tablets until the 100’s arrived. She reluctantly agreed.

Fortunate for me, the medical staff was obviously unaware of this program, as I still have not received the 100 mg tablets. I talk to Amber, at Destination Access, every day and it seems that every time she receives the form that she needs, which includes my prescription, it is incomplete, there is either; something missing, it’s signed by the wrong individual or the dosage is not on the form. While it is frustrating, since the meds are my current lifeline, it works for me, as I will be taking the 70 mg dose until my prescription new arrives.

I have to say that I have had more energy and been able to do more since my dosage has been cut in half. I am hoping that my blood results are still within reason and that my white cells have not increased above the normal range. I will be getting my blood drawn at a lab close to home and the results will be sent to my doctor. This is a common procedure and I am hoping that I will receive them later today.

Fast forward; it has taken six hours and four phone calls to get my results. I find it so annoying that the gal that answers the phone, and confirms that they have received my test results, cannot tell me what they are. My test results are MINE and I want to know what they are. I finally call for the fourth time, state that I am not hanging up until I know, and get the results. Once again, I know that this is routine for them; but don’t they know that I have an experiment going on here? Even if it is only in my own little world; in my own little corner, in my own little chair?

Results:

1.     White Blood Count; 4,100 down from the previous week.

2.     Red Blood Count; 3,300 also down from last week and below normal.

3.     Platelets; 18,600 up and back in the normal range. Hopefully no more bruises!

So, I am not sure where that leaves me, but it seems as though cutting my meds in half did not allow an increase, but created a continual decrease in my red and white blood cells. Maybe I was right and I don’t need as high a dose as I have been prescribed. Since I still do not have the new prescription, I am hoping to stay on the 70’s for at least one more week. I plan to discuss this with my doctor in more detail during my next visit.

Follow Up; City of Hope and Sprycel vs Tasigna vs Gleevec

Disclaimer here; I am speaking from my own experience and situation and am in no way attempting to diagnose or sway anyone to my way of thinking!

First question; Did I like City of Hope? It is very difficult to answer a question like that without being derogatory or negative. City of Hope is a wonderful facility that truly offers “hope” to many, many people that would otherwise have none. They are top notch in their field and save lives on a minute by minute basis.

When I said that City of Hope was literally a “city”; I meant it. After revisiting my thoughts about City of Hope, it may be possible that; "I am just a small town girl…living in a looonely wo-orld"….. Just kidding there; and that I found the whole experience overwhelming. Everything there is in “mass” it is a sea of sick people all hoping that the odds are with them, as opposed to against them. The nitty- gritty reality is that some of us will live and some of us will die. We all put up the best fight that we have in us and pray and cheer on all of the others like us. Cancer sucks; it doesn’t matter what kind you have and it doesn’t matter who you are, it sucks for everyone. We all have a story and the plot changes once we are diagnosed. It not only changes for us, but for every one that we know and love. That being said, I shall hold all judgment for now, and realize that while the City of Hope may not be a perfect fit for me, it might be. How’s that for being diplomatic?

As far as my new doctor, I will see her again before making any final decisions. She seemed as though she was interested in my case and health and answered most of my questions, yet not to the degree of my expectations. And yes, Julia I am afraid that “barraged” her with too many of them! She did say that they could knock me out for my next bone marrow biopsy, and said that as long as the meds were working that I would not need a bone marrow transplant. She did not really delve into the “if” the meds stopped working scenario and is just going with the “they are working now” attitude that I find a bit annoying. So no, in my opinion it was not answered in a way that I am yet comfortable with. I just don’t want lose my window of opportunity if there is such a thing and if that makes any sense.

As far as the smiling upbeat atmosphere you see in commercials, I witnessed more of a “we’ve got work to do, let’s get it done” atmosphere. As far as what I shall do if an issue arises, it would depend upon whether I am at home or in the desert visiting my family. Right now the City of Hope is my primary facility, with Dr. Camacho as a backup!

Next question: My leukemia is currently in the chronic phase. My current doctor said that I was diagnosed in the chronic phase, but my pathology report is unclear to me. In one sentence it states that I had 51% blast cells, another sentence states that I had 41% blast cells and the third reference states that I had less than 2% blast cells. A bit contradictory if you ask me! I will continue on my journey to confirm just what stage I was in when diagnosed, as this can alter my treatment to some degree. Was I acute or was I chronic; who knows?

As far as to the “why” they started me on Dasatinib (Sprycel) as opposed to Imatinib (Gleevec) or Nilotinib (Tasigna), I am not really sure. I do know that my insurance does not pay for ANY medications unless I am hospitalized. I also know that Gleevec is the least expensive of the three drugs. Tasigna is next in line. My original doctor claims that Dasatinib (Sprycel) has the least amount of side effects and is the most easily tolerated. Maybe he just was sparing all of the doctors’ following him from my constant whining from the Gleevec side effects. I also know that Sprycel has a patient assistant program called Destination Access that is currently paying for my drugs. It may be as simple as that; I do not know if the other drugs have the same type of patient assistance programs.

What I don’t know is if I am screwed by starting at the top of the list; or blessed. My side effects are minimal and since lowering my dosage, I have more energy. But I wonder if I have eliminated my ability to go from one drug to another if my cells begin to become intolerant to the Sprycel. I know that Gleevec patients can often go for many, many years before switching to Tasigna and then many more years before switching to Sprycel. I wonder if I have been taken out of that game or if I even needed to play it.

 The doctors’ response to that question is that Sprycel seems to reach a cellular remission quickly; and the faster the better. They do not say that the others do not do the same thing. Soooo, I really do not know the true answer to that question, but I do know that I seem to be experiencing fewer side effects than other people on other drugs.  I may have just been cut a break there, I do not know; but I’ll take it!

Butterfly kisses and butterfly needles; Thanks to all of you that are reading my blog and cheering me on my journey and a special shout out for Rhonda, who recently, graciously and strongly looked breast cancer in the eye and said, “I don’t think so!” Rhonda, you are a survivor and an inspiration!