Saturday, April 30, 2011

Dasatinib (Sprycel); My Dosage Dilemma

While I know that many people just take their doctor’s recommendation as law; I do not.  My entire life I have been witness to many medical blunders; misdiagnoses, over medicated, wrongly medicated and even the wrong person operated on. I am not saying that all or even most Dr.’s are incompetent; I am just stating that they are human. As humans, we all are capable of make mistakes or becoming a bit lackadaisical in our jobs or everyday life. I mean let’s face it; an oncologist regularly deals with cancer patients. That is his/her profession and is what he/she does all day long. It could easily become routine for a Dr. that has treated hundreds of patients for the same disease, day after day, year after year.  It is something that he understands and is accustomed to; it is familiar to him. As a newly diagnosed patient, learning that we have cancer is not only a shock, but a frightening change in our lives. It is delving into the unknown with uncertainty and fear. It is our life and world that is crashing down around us. It is personal to us and to our friends and families and not at all routine.

Anyway, I have been prescribed 140mg of Dasatinib (Sprycel) once a day. I have questioned my doctor about the dosage over and over again, to his annoyance I am sure, as the information that I have been able to find regarding Dasatinib clearly states that a person in blast crisis starting dosage is 140 mg; I have been told that I am NOT in blast crisis. The standard dosage of a CML patient not in blast crisis is 100 mg per day.

My other argument is; do I really need that high of a dose of this medication? I believe, and these are only my beliefs, that a person should be medicated by weight, not by standard protocol. I know that my body is very drug sensitive; a little goes a very long way. I am concerned about the amount of medication taken over a long period of time; long being the rest of my life. I know that this particular drug has been around approximately six years. So, it stands to reason that they do not know the “really” long term side effects of this drug. It is my intention to be around for a VERY long time, and I really do not want to be told 10 years down the road that the meds I have been taking to keep me alive, have inadvertently destroyed my liver, heart, kidneys, brain, etc. Yes, part of my paranoia stems from the Cipro poisoning that I have been suffering through for the past two years. I also know that it often isn’t a disease that kills people, but the cure. Many people die from complications stemming from their cure.

My current theory is that I should take enough medication, based upon my weight (120lbs.) and metabolism, to put my leukemia into remission and to keep it there. Since my blood will be tested weekly, we would quickly know whether or not that can be achieved with 70 mg of Dasatinib instead of 100 mg. If it can, then that is the dosage I should ingest.  If 70 mg does not achieve the desired results, then I could easily increase the dosage. If we start at 100 mg, we will never know if 70 mg would have done the trick or not. If I am taking a lesser amount of the drug, then ten years down the road, my body has processed much less of it; and my pocketbook would still be around, since the cost of the drug would also be less than its’ current price of $8,513 per month. Yes, that is WITH my insurance! Without my insurance it is $15, 836 per month.

Now, back to being the patient and referring to how I spoke about doctors becoming lackadaisical. I understand that it is very important to take Sprycel exactly how it is prescribed. For me that is once a day at the same time of day. No antacid and no grapefruit. I have already set the alarm on my phone to go off at the same time every day. As tired and forgetful as I am, I really need to get one of those pill thingies to put one pill per day in each section, as even though I have the alarm set, I could easily walk into the kitchen and get distracted and forget whether or not I have taken the pill. It is my goal to not become lackadaisical in my responsibility, as the patient, of taking my pill every day, on time, even when I begin to feel better. I have read that missing as few as three doses per month can have a detrimental effect on the desired outcome of the drug and that continuing this trend can lead to a progression of the disease.

So, in a perfect world the doctor would treat each and every patient as an individual and every patient would follow their doctor’s orders. Kinda’ contradictory, huh? I guess what I really want is a good answer to why the dosage of my medication is the prescribed dosage, not just “Because, it is.”  So, for now, in protest, I am taking 140 mg of Dasatanib aka Sprycel, and will continue to search for dosage answers.

Friday, April 29, 2011

The Bio-Hazardous Waste That Will Keep Me Alive: Sprycel

Despite the fact that I was ecstatic to be back home in my luxuriously, comfortable bed, I once again woke to tears and wondered when the early morning pity parties would end.  Lying in bed I had to finally face the fact that today was the beginning of my real journey. It will be a new journey full of the trials and complications that living with chronic myelogenous leukemia entails. What those trials are and how they will affect my body I do not yet know.

What I do know is that the first step down this path is to suck down my new lifeline; a very expensive pill called Sprycel. The bottle that it arrived in labels it as a chemotherapy drug. It also says “Toxic” and “Dispose of as Bio-Hazard.” Now if that isn’t enough to scare you, the insert surely is! There are the typical, usual side effects that come with most medications, such as diarrhea, headache, cough, skin rash, tiredness and vomiting, but the ones that really caught my attention were the low blood counts, abnormal bleeding and an abnormal heart rate leading to death. (That would explain why they do routine ECG’s in the doctor’s office prior to and while you are taking this drug.) I figured that I could live with the continuing hair loss and wondered just how tired, “tiredness” meant.

The other major concern to me was the side effect of muscle and joint pain. I am just recovering from a severe reaction to Cipro, an antibiotic in the flouroquinolone family.  Cipro destroyed the sheath around my muscles and tendons and damn near crippled me for 3 weeks and continued to cause extreme muscle and joint pain for 10 additional months. It was the most horrendous and long lasting drug reaction that I have ever experienced. To read more about that you can visit my “Cipro Poisoning: Have You Been Floxed?” blog.
The combination of a heart attack resulting in instant death and the thought of more muscle and joint pain was almost more than I could bear.  It took me hours before I convinced myself that the risks of taking the pill; far outweighed the consequences; certain death from leukemia.

“Over the lips and across the gums, look out body, here it comes!” I swallowed the pill and waited. Within the first hour I did feel a bit brain fogged and then the diarrhea began. It lasted for several hours and then ceased. My brain began to clear and I took a nap. Upon awakening I was pleased that not only had I not suffered a heart attack, but I actually was beginning to feel a bit like my old self. I prayed really hard that the medication would not cause any other side effects and would do its’ job; help to get the blood cancer into remission.

By now it was late afternoon and Joe had returned home from work. We had dinner and turned on the television. Our DVR was full and we settled onto the couch for a low key evening. Within minutes I was sound asleep. It seems that the excitement from being home, the leukemia and the new medication were going to be in control of my body for a while. I was exhausted both emotionally and physically.

 My goal, as I stumbled to bed was to increase my conscious, awake moments and my activity every single day. I was anxious to return to dancing and my regular everyday activities. I wanted my life back and I am determined to get it!

Thursday, April 28, 2011

Going home!

I saw Dr. Camacho this morning and he has banished me to my home. My fever went down with a little help from Ibuprofen and my blood work came in in its’ continuing downward trend. My white cells were 98,000 on Monday and they are 45,300 today, only 4 days later. Dr. Camacho said that the chemo should continue to bring them down for the next three weeks. I am to get weekly blood tests and make an appointment at City of Hope as soon as possible.

I will begin taking a drug called Sprycel on Saturday morning. I have received a 1 week supply from Bristol-Myers Squibb and have papers to request continued assistance from them, with me. The nurses call Sprycel the chemo drug and the doctors say that it is not chemo. What I do know is that the bottles’ label says that it is “Hazardous, Toxic Waste.”  I will be doing more research once I get home.

Because we have two cars here in the desert, I will follow Joe home. It’s hard to believe that I haven’t driven a car in almost two weeks. I am anxious to get on the road, but am feeling pretty crummy. After about an hour, I am so nauseous that I call Joe and we pull over. I am a bit shaky and weak but after taking a meclizine and walking around in the fresh air, I am ready to continue the journey. The rest of the drive seems very long, but at least we did not have to stop again.

Finally, we pull up to the house. We were very fortunate that it had rained like crazy while we were gone, because the flowers in the front yard looked amazing! The garden in the back had grown like crazy and the very sight of the inside of the house made me cry. It seemed as though a lifetime had gone by since I was home, and I was so glad to be there. It is funny how just being able to view familiar things through your eyes can make you feel so good all over. It was like I could not soak up enough images to fill all of the empty holes that had been bore into my soul. I had returned home differently than I had left. I wasn’t exactly sure just how much my life would change, but I was sure that now that I was home, that I would find out.

Home will allow me to contemplate, accept and believe that I now have leukemia. It will allow me to finally visit, explore and fully digest this change in my life and to begin the healing and managing process. I feel as though I can now research and educate myself about this blood cancer that I really know little about. I need to become well informed and have a clear understanding of what it is that I have, what my choices are and how it will affect my life and my body. There are many unanswered questions and many unknown fears. Home is the perfect place to explore all of these, but for right now, I am just looking forward to sleeping in my own bed! It is wonderful to be home!

Wednesday, April 27, 2011

Taking a Break from Leukemia

Today is the last day that we have to be in Palm Springs. I will see the doctor in the morning, and provided that all goes well, we should be able to go home. While I know that Palm Springs in February is a great place
to be, the only place that I really want to be is at home. I left home on February 7th for a quick visit to my family and a routine medical checkup, it is now February 17th, and I have leukemia and haven’t been home in 10 days.

Surprisingly, the weather is a bit cool for this time of year, but since we have been cooped up for so long, we decide to head to the pool and play some cards. We stop at the concierge desk to pick up a game and find out that the only game they have available is Cribbage. I have played Cribbage once before and Joe has played several times, so we decide to give it a shot. Of course we had to go back to the condo to look up the rules on the internet. We quickly copied them down and headed to the pool. It was wicked hot in the sun and nice and cool in the shade; we chose the shade.

We decided that we would wing the first round and then play for real. I’m thinking that Joe was interpreting the rules to his advantage because he was kicking my butt in every round. Talk about no mercy, I even tried playing the “leukemia card” to no avail! I never won a single game. After several hours of playing cards, the sun started going down, it got cold and I had enough new wounds to lick, so we headed back to the condo; I headed to the jetted tub. If we didn’t know better, we could almost pretend that we really were on vacation.

After dinner, I began to run a low grade fever, the first reminder of the day that I really still had CML. The air conditioning in the condo was not working and I was burning up. Fortunately I found a fan hiding in the second bedroom closet. I moved it to the master bedroom and spent a miserable, restless night alone with my own thoughts of how my life was going to change once I returned home.

I had many medical issues that needed my immediate attention; I had to decide upon a new doctor closer to my home and figure out how to pay for my new medication. The meds are $15,875 per month without insurance. With my insurance, my co-pay is $8,675 per month. Dr. Camacho has reassured me that he has never had a patient that did not receive their meds. Trust me; this is a dilemma that will keep you up at night.  I also wondered how long this new exhaustion that I felt was going to last and when I could resume my normal routine, at this particular moment just the two plus hour drive seemed daunting. My brain spent most of that night flitting from one thought to another so quickly that I actually woke up with a headache. I suppose that there will be many adjustments and changes in store for the both of us.

Tuesday, April 19, 2011

Chemo, Hair and My Mother!

It has been my parents’ goal my entire life to spare me, my sister and my brother from any unsavory news. This probably began with the death of my seven year old sister, when I was only twelve years old. It was a devastating event that changed all of our lives forever. I know that they are always trying to do what is best for us. As an adult I find this very frustrating as they often hide their own medical issues so as not to worry us. I believe that whether news is good or bad, it is meant to be shared. Families need to support and lean on each other, especially during difficult times.

While telling my own children that I had leukemia was not high on my list of joyful news, I have always been very open and honest with them, keeping them in the loop whether it was good or bad news. So, it was no surprise when Joe told me that my mother had secretly told him, that she would like to take me shopping for a wig. She wasn’t sure how to approach the subject with me, not wanting to upset me, but wanted me to be prepared when and if my hair fell out. God bless my mother!

Of course Joe and I have already had the hair discussion and we both laughed about the fact that I am constantly saying that I want new hair. I have never been really fond of what I have so off with the old and on with the new!

My parents live in Palm Desert so once we got up and moving, we headed down the valley. Being that neither one of us was prepared for this vacation; we made a stop to buy some suitable clothing.  Sucks to be in Palm Springs with no clothes. Once we finally arrived at my mother’s, I figured that I would spare HER the discomfort of bringing up shopping for a wig and I just blurted out, “So, let’s go buy some hair!” She said, “Oh honey, I brought you into this world with a full head of hair, and I don’t want you to be without, in case you need it.” Then she said, “Is that OK?” What she meant was, is it OK that she wanted to help me be prepared in case my hair fell out, not, was it OK that my hair might fall out! Of course I found it all right, wonderful even. She feels so helpless and wants to do anything that she can to make my nightmare more manageable and if buying me hair helps her contribute to my well being, then I am one lucky girl! 

My Mother with the Wig On!
God, how I love my Mother! She is the sweetest, dearest and most kind human being that I know. Just thinking about how much my leukemia is hurting her breaks my heart. I think that my Dad was hoping that he and Joe would have a few beers and hang out, but I foiled the plan and drug Joe with us to the wig store.

The gal in the wig store was a kick! I tried on wig after wig, laughing hysterically the whole time. I mentioned that I never really liked my own hair very much and that is probably because I have very little of it. The wigs that I was trying on were beautiful and full, but looked completely ridiculous on me. They were just too much hair! I even tried on a blond one; just to show Joe how ridiculous I looked as a blond. Funny thing was though, since I was so pale, I didn’t look nearly as silly as I did the last time that I tried on a blond wig for Halloween. Finally, somewhere from the back of the shop, the gal brings out a wig that most resembles my own hair. I look in the mirror and I still see me. Viola’, we have succeeded. My Mom also slips in a knit hat that is kinda’ funky and we leave the store.

Joe and I are going to pick up my son and bring him to my Mom’s for dinner, so we decide that I should leave the wig on and see if he notices. He climbs in the car and it is the same old teenage conversation. We get back to my parents’ and my Dad had ordered yummy pizza. Forty-five minutes have gone by and still nothing; nothing from my son OR my father! Finally I cannot stand it any longer and I say, “So, what do you think of my hair?”  My son casually replies, “Mom, I know that it is a wig, I just didn’t want to be rude and say anything.” Ugh, kids!

I think that the other two would’ve jumped right on it. I eventually mention it to my Dad. He says, “Oh, I didn’t even notice. It looks just like your own hair.” Truth of the matter is that it looks even better than my own hair!  C’est la vie; Such is Life. I guess now all I can do is to wait and see just how much of my own hair falls out. Regardless of the amount of hair loss, I have been prepared by my dear Mother, the woman who has also prepared me so well, by example, to fight this blood cancer. Thanks, Mom!

Monday, April 18, 2011

Free From the Hospital; Not Free From Leukemia

I was so physically and emotionally drained that I slept like a log. If it had not been for the continuing night sweats, I do not think that I would have woken at all. As it was, I think that I was able to just kick the covers off and on all night long without even really noticing.

The early morning light, seeping in through those ridiculously inefficient vinyl blinds, brought me out of my unconscious state and back to reality. Once again the tears just started flowing down my face. Mornings seem to be a particularly rough time of day. It is a quiet time when my brain has a way of slowly bringing reality to the surface.  During the day when there is activity all around me, I can immerse myself in that activity and pretend as though my life hasn’t changed. In the early morning hours I have to face my new reality.

 During this part of the day I can actually feel my diseased blood pumping through my veins. It pumps to every single part of my body. It is cancerous and I want to run from it. I want it gone from my body, drained and replaced with new healthy blood. I want it to be strong and red.  I want it to nourish my entire body from the inside out. I want it to help my brain and all other organs to be strong. I want it to deliver oxygen and fight disease. I wonder if it will encourage other cancers to creep into other places. I want it to go away!

My pity party causes Joe to wake up and join me. He has been great. He allows me to have as many pity parties as I like, but never allows them to turn into wallowing.  We decide to get up and enjoy the incredible weather in Palm Springs; after all, we are in one of the greatest places to be in February. I have a favorite little breakfast place just down the road. It is called “Bit O’ Country” and the food is delicious! Of course, once I get moving I become nauseous. I take a meclizine and head to Bit O’. Once there, instead of ordering my usual, eggs with the best home style potatoes full of onions and green peppers, I order oatmeal. So depressing! I am not even able to finish the bowl that they gave me; pity party number two underway.

Even though I am exhausted, it feels wonderful to be outside. We head down to Palm Desert to my daughter’s best friends health food store to do a bit of shopping. It is called Harvest Health Foods and Laura has everything under the sun in that store. She is very knowledgeable and I have known and loved her since she was six years old. I am so proud of her and the business that she has built.

Once we arrive, we go crazy! We bought organic everything. We were stuck in the desert for four more days and planned to cook most of our own meals to avoid being around too many people and too many germs. The tomato/basil pasta with broccoli and organic parmesan cheese and butter was the best meal I had had in a week. I ate so much that I was miserable all night long…….Note to Self!

We spent the rest of the day just holed up in the timeshare semi-comatose. I think that the previous week had finally caught up with the both of us and something like shock had set in. It is kind of like when a death occurs and you just go into auto-pilot. You do what you need to do, respond appropriately and function in a human capacity; the only difference is that you do all of these things without even realizing that you are doing them. Tomorrow is going to be a better day.

Wednesday, April 6, 2011

Day 6: Our First Valentine’s Day Living with Leukemia

Valentine’s Day is a very special day for Joe and me. We met on New Year’s Day, he lives in California and I lived in Idaho. After a few dances and conversations we both returned to our respective lives. A few days after returning home, the phone calls began. We spent 6 weeks talking on the phone 8-10 hours a day and met again in person on Valentine’s Day. I never would have dreamed that we would be spending this anniversary in the hospital.

Fortunately I had already purchased a Valentine’s Day card and had it with me. I was able to personalize it and sign my name right before he walked into my hospital room. We exchanged cards and as soon as I started to open mine I began to laugh. We had bought each other the exact same card. We had a good laugh and I hoped that I would be out of there sometime that day. I think that Joe was secretly hoping that they would keep me there to keep me safe.

My blood work came in at 98,000. That is below 100,000 so I was praying for my release. I was also looking forward to getting that catheter out of my neck! We spent the day hiking around the nurses’ station and watching NetFlix. Finally around 6:00 pm my doctor arrived. He was under the impression that his physician’s assistant had released me. He re-checked my blood work and gave me my walking papers.

Now if you remember what I previously said about shift change, then you already know how hectic it can be. I was discharged during shift change. A nurse literally runs into my room and practically rips the IV out of my arm. I ask about the catheter in my neck and she groans. She leaves the room in a hurry and in comes my least favorite charge nurse. She is one buff, all business and get right down to it kinda’ gal. I of course am a little freaked out about getting a 20 cm catheter yanked out of my heart through my neck. The way she was yanking the adhesive squares that were holding it in place was far from gentle. She pushes my head left and instructs me to hold still. I ask her if it is going to hurt. She laughs. Eventually she gets all of the tape and other goo off of my neck and then realizes that there are stiches holding it in place. She leaves, comes back and roughly removes the stitches and clips my neck just a bit. I say “Ouch” in quite an irritated tone and she takes a deep breath. She tells me that she is going to removes the catheter now and for me to take a deep breath. I feel the tube being pulled through the hole in my neck. It is not really painful, just sort of gross. It feels like a swooshing movement from your chest.

Once the catheter is out, there is some bleeding. She asks me to put pressure on the gauze on my neck and tapes a gauze pad over the wound. She literally runs out of my room and the discharge nurse shows up with my discharge papers. You can tell that everyone is on a frenzy to get me out of there before the next shift begins. She briefly goes over the discharge notes and asks me to sign. I figure that I can read them when I get settled at the timeshare. It is amazing to me how quickly the staff can change modes. One minute they are overly concerned about my extremely low blood pressure and the next they are throwing me into a wheelchair. It was actually quite comical, but annoying at the same time.

Being wheeled outside for the first time in a week was exhilarating! The fresh air, mountain views and slight breeze were rejuvenating. I felt free, free from the tubes, the chemo, the leukaphresis treatments, the nurses’ and the confinement. What I wasn’t free from was the leukemia. It was coming right along with me and will likely be with me for the rest of my life.

I choose not to think about that at the moment and to think about spending the rest of Valentine’s Day doing what I want to do. We arrive at the timeshare and I am a bit shaky but so happy that I cannot stop smiling. The smell in the parking structure is so overwhelming that I have to hold my breath. The chemo has made my sniffer extra sensitive so all smells are exaggerated. Once inside the apartment, I head to the bathroom for a bath. Much to my delight it is a Jacuzzi tub. I think that I must’ve stayed in it for 30 minutes. I needed help washing my hair as I still could not get my neck wet, but I am telling you that I now felt like a million bucks!

It felt so good to be up and around without any tubes that I had Joe sit on HIS throne for the remainder of the evening so that I could wait on him! Sleeping in a real bed with no interruptions was welcoming, waking up to the reality was not.

Sunday, April 3, 2011

Day 5: I Think That I Almost Feel Human

Upon waking this morning I realize that I once again feel human. A dripping wet with sweat human, but a human nonetheless. I did request “Arnold’s” blood and I am thinking that they must have obliged as I feel much stronger today than I did yesterday. I now understand the importance of all of those pints of blood that I have donated over the years. Yes, blood donation is a very good thing to do while you are healthy, even if your only motivation is to receive all of the goodies that are sometimes offered. No matter the reason it can help to save or improves someone’s life.

After getting up to use the bathroom, I decided to brave the mirror and brush my teeth.  It truly is a frightful sight. “Who are you, and what did you do with the girl I used to see?” I was so astounded by my pale, skinny face and matted hair that I just shook my head and laughed until I cried. What I mess I was! This living in denial is becoming more and more difficult by the day. Harsh reminders are everywhere. I brush my hair and wonder how long it will remain on my head. I brush my teeth and am grateful that I only have a few small mouth sores. I wash my face with a warm cloth and revel in the way it feels. There is a shower in the bathroom, but it is only a tease. They will not allow me to use it as long as the catheter is in my neck. Truthfully I don’t think that I would have had the energy even if they would have given me the OK.  I rinse out the face cloth and use it on my body. I am now ready for dry jammies.

This turns out to be a challenge. My fourth IV is in my right arm. The IV pole is on the opposite side of the bed that my “bag-o-crap” is on. I try scooting around the foot of the bed, dragging the IV pole with me and can almost reach my bag. I look for something to extend my reach, can’t find a thing, and feeling defeated, plop down on Joe’s throne. It is then that it occurs to me that I can unplug the damn thing and bring it with me…..Duh! chemo brain already! New, clean, dry jammies make the struggle that is equivalent to jogging three miles well worth the effort. I ring the call button and ask for new sheet, yet again; they oblige. I climb back into my bed and am feeling like a princess; a princess that won’t be looking into the mirror again today!

Joe calls on his way to the hospital. If you remember, neither one of us had brought our chargers on this vacation, so he had to purchase new ones. The only one that they had for his phone was a car charger, so every night that he left and every morning on his way to the hospital he had to drive around Palm Springs to charge his phone. I tell him that I am feeling better and that I was actually posting some updates on the internet and doing some research. He asks if I want anything and I tell him that a breakfast croissant from “Jack- in-the Crack” and a milkshake would be great! I am either really sick or really feeling better; I am not sure which considering that my request actually sounds good. I had fallen back to sleep by the time that he arrived.

The nurse finally spouted some good news. My blood count was down to 112,000 and they were going to see if the chemo would continue to lower my blood count without any more treatments; chemo or leukapheresis. Now if we can just get my temperature under control maybe I can get the heck out of here.
My father finally couldn’t contain my mother any longer and he brought her up for a visit. She has been battling a large wound on her leg for almost two years. It really is the “black hole.” She is in so much pain that I really didn’t want her to make the effort, but she just had to see, with her own eyes, that I was alright. Of course it did my heart good, too. My sister, who is also fighting medical issues of her own arrived and took Joe to lunch. I am a very blessed girl in the family and friend department.

I took several hikes around the nurses’ station throughout the day and many naps, too. A day without any treatments was welcomed and the light at the end of this part of my journey began to shine a little bit brighter. I was actually able to watch a few episodes of “Californication” with Joe before saying good night. This doggone fever is still persisting but not getting any worse. I put on my eye mask, closed my door, put in my ear plugs and went to sleep. Hopefully I will get out of here tomorrow, it will be Valentine’s Day. 

Bricks for the Brave!!