Tuesday, June 28, 2011

Testing my Endurance on Sprycel

This is one of the greatest weeks that I am having since being diagnosed with leukemia. Up until now, I have been unable to visit with my granddaughters that live in another state. I was unable to be at the birth of my last grandson because I was sick and have not been able to travel to visit them. But this week things have changed!

My daughter in law drove the kids to Palm Desert, about two hours from my home and I finally got to hold my new grandson. He is now five weeks old. As soon as I had him in my arms and started talking to him he began to smile and coo; it was the sweetest thing ever. There is nothing like holding a new baby in your arms; he is just so beautiful.

Yes, we made them!
As a bonus, I was able to bring two of my granddaughters back home with me for four days. I was hoping for a full week, but I will take what I can get. The girls are four and five year’s old and sheer bliss. They are so delightful and so much fun. We have been sewing, cooking, gardening, coloring, making puzzles, reading books, making headbands and dress up dolls and swimming. Tonight we are going to see the baby chicks and geese at Joe’s folks’ house.

My daughter and grandson came up last night to join in the fun, so I have given up trying to keep any semblance of order in the house. As long as no one trips and falls, and we can still find shoes and hair bands, life shall remain chaotic until the merriment ends. My only longing is for my third granddaughter that didn’t get to make the trip; she is two and doesn’t “like” long car rides! I will have to plan a special time to have just her.

Going to bed early and maybe watching a movie in the afternoon will hopefully keep my energy level high enough to make the two hour drive back to the desert, to hand off my precious girls to their grandfather so that he can return them, safely back home, to their family. What a wonderful week I am having!

Monday, June 27, 2011

Leukemia Check-Up

I had my third visit with my new doctor and am still so glad that I made the change; seek and you shall find. My advice to anyone is that if you are not completely satisfied with your doctor, take the initiative and find one that you are comfortable and content with. Chronic myelogenous leukemia means just what it says; chronic. You will likely be spending the rest of your life visiting this person, so you might as well like them!

My current blood work is a bit on the low side with the whites at 3,700, reds at 3,800 and platelets at 166,000.  The current plan of action is to do another bone marrow biopsy, this time under general anesthesia, in two months’ time. Depending upon the results, he and I are both hoping to be able to reduce my current dosage of 100 mg of Dasatinib (Sprycel ) to 70 mg. I am really anxious to see if the decrease will help to eliminate or at least lessen my current side effects. I would love to not always be so draggy and often sad. I would love it if my hair would quit falling out and these little bumps on my skin would go away. It would also be really nice if I could enjoy the summer without the heat making me sick. All small things in the big picture, but heck, why not hope for the best!

So, for now, everything is still status quo.

Thursday, June 23, 2011

Sprycel (Dasatinib) and Summertime

Yesterday was the first really hot day this year. While outside watering the garden I noticed that I started to get a headache and become a bit shaky and nauseous. I didn't spend my typical hour or two out there weeding and harvesting, I instead, quickly retreated to the air conditioned house; I drank a cool glass of water and had to sit down for about 45 minutes before the nausea and headache subsided.

Later that afternoon, Joe and I headed to the Borderline for an hour of practice before teaching our Country Two Step lessons. One Triple Two Step and Polka later, I was sweating like I have never sweated before and so hot that I thought that I was going to crumble. I downed a glass of water and hit the dance floor again; we have a competition in three weeks and I want to be more prepared than I was for the last one. Despite the fact that the industrial fans were blowing all around the dance floor, my body just continued to heat up. My face was beet red, burning hot to the touch and my head was throbbing. I didn’t notice the nausea until my practice was over, so that was a good thing. Once my practice was finished I was able to take the rest of the evening at a much slower pace, but I am truly amazed at how my body now reacts to heat. It feels like a furnace, burning from the inside out.

I am driving to Palm Desert to finally meet my new grandson on Saturday and am a bit anxious to how I will react to that extreme heat in the desert. I will only be there for a few days, but I am blessed to be bringing two of my granddaughters back home with me, for a week. I am praying that the heat of the desert does not wipe me out or set me back as I will have two precious little girls with me and the last thing I want is to be wiped out!

Wednesday, June 22, 2011

Sprycel: The Little White Pill; Why Can’t I Remember?

Since my goal is to reach a complete molecular response, I must do my part, to the best of my ability. My “job” is to take a little white pill every day; at the same time. Since there is information out there that suggests that missing as few as three doses a month, may prevent you reaching your goal, I know how important that it is. It sounds simple doesn't it?

I mean come on, how hard can it be? When I first started taking Sprycel, I simply got up every morning, brushed my teeth, avoided brushing my falling out hair and went to the kitchen and took my pill; precisely at 8:00 am. Eventually I started to wander into the office and then say “Dang, I forgot my pill!” Soon my daily dose was 8:15 am. Somehow I have managed to work myself all of the way up to 10:30 am; but in my defense, I have remained steady there, for the past two months.

I figured out how to set an alarm on my cell phone, got smart enough to put a few pills into my pill holder in my purse, have a few more stashed in my make-up case and one even in the glove box; that way, no matter where I am, I am armed and ready.  At $285 a pill, I have a fortune stashed everywhere you could imagine!

Here is my new issue; the alarm goes off, I stop whatever I am doing and head to the kitchen where the Sprycel bottle prominently sits on the counter. Most days I simply pick up the bottle, open it, take out a pill and swallow. Over the lips and across the gums; no problem, right? Wrong! Here is the new dilemma; I am in the kitchen, with the Sprycel bottle, either in my hand or still on the counter; I stare at it and it stares back; and I fervently try and remember whether I actually already took the pill; or not. Talk about frustrating! I blame it on my chemo brain; but really, to not be able to remember whether or not you took a pill has got to be on the top ten list of frustration.

Idea number three; I shall haul myself out of the house today to purchase one of those little pill boxes with the days of the week on it; hopefully that will solve the day old mystery of “Did I, or didn’t I?” If it is still in the box, then I didn’t, if it is gone, I did. Of course, that is only going to work if I remember to take my daily dose with me if I leave the house, and if remember to fill it on the same day every week. I must not rely on my secret stash for my daily dose; it is only there for emergencies.

I can do this, I know that I can! 

Tuesday, June 21, 2011

Chronic Myelogenous Treatment Responses, Continued

After reaching a complete hematologic response (CHR) one could hope for a complete cytogenetic response (CCyR). This response would mean that there are no CML cells in the blood or bone marrow that can be detected by the Fluorescence In Situ Hybridization (FISH) test. FISH is a quantitative test that can identify the presence of the Bcr-Abl gene. It does this by using binding DNA agents that are specific for Abl and Bcr. The probes for both Bcr and Abl are labeled with chemicals that each release a different color of light. The color shows on the chromosome that contains the gene, normally chromosome 9 for Abl and chromosome 22 for Bcr. FISH can detect the piece of chromosome 9 that has moved to chromosome 22 in CML cells. Since FISH can detect Bcr-Abl in blood cells, it can be used to determine if there is a significant decrease in the number of circulating CML cells as a result of CML treatment. The number of cells at this stage is estimated at less than 1/100 of the level at the start of treatment. Pretty interesting stuff, if I do say so myself!

So, assuming that you have reached first complete hematologic response (CHR), and then complete cytogenetic response (CCyR), you next goal would be a major molecular response (MMolR) and finally a complete molecular response (CMolR).

A complete molecular response is achieved when the leukemia burden is reduced to 1/10,000 or less below the level at the start of treatment. In this stage there is no evidence of the Bcr-Abl RNA or DNA in the blood or the marrow. This quantitative Polymerase Chain Reaction (PCR) test is done by increasing or amplifying small amounts of specific pieces of either RNA or DNA making them easier to detect. It is the most sensitive test of all. When performing this test, the Bcr-Abl abnormality can be detected even when present in a very low number of cells. About one abnormal cell in one million cells can be detected by PCR testing.

This complete molecular response is the ultimate goal of all people that are diagnosed with chronic myelogenous leukemia. Unfortunately this goal is not always an easy one to achieve. It requires diligently taking a Bcr-Abl tyrosine kinase inhibitor every day. These TKI’s come with a long list of side effects and risks. The greatest risk (in my unprofessional opinion, besides death from a heart attack of course) is becoming intolerant to the drugs and thus needing a bone marrow transplant in order to live. So with CMolR in sight, I march forward in my battle to reach this goal!

Monday, June 20, 2011

Chronic Myelogenous Leukemia: Measuring Its’ Response

Measuring the response to therapy for CML patients is done by blood and bone marrow testing. This testing is critical to CML patients as the greater the response to drug therapy, the longer the person’s disease can be controlled. Other things that factor into the equation include the stage and features of the person’s CML at the time of diagnoses.

At the end of this week I will be seeing my doctor again. He will be performing the usual CBC with differential and an additional blood test called a Quantitative PCR (Polymerase Chain Reaction) test. A PCR test had not been done when I was first diagnosed, or on subsequent doctors’ visits, so the last time I saw him I had my first PCR; which gave us a baseline. I am anxious to have this second PCR performed because it will actually tell me how my blood is responding to treatment thus far.

There are four different stages of response for blood cancer patients. I will discuss two of them today and the other two tomorrow. Nearly all people undergoing treatment will reach the first response level which is called a “complete hematologic response” (CHR)) This response is achieved when immature CML cells are eliminated from detection in the blood; the white cell count is no longer elevated, the platelet count is in the normal range and the spleen is no longer enlarged. This test result is monitored by a simple blood test. The goal during early treatment is to decrease the number of chronic myelogenous cells to one-tenth of the level at the start of treatment. My guess is that I have quite possibly reached this goal as I had 380,000 white cells when I was diagnosed and I currently have only 4,200 now.

Another stage of response is the “major molecular response” (MMolR). This is monitored by the blood test called the quantitative PCR. This is the one that I am excited about! This test is a bit more confusing to understand, but what its’ test results show, is your response to treatment. The goal is to have a 3-log or greater reduction in Bcr-Abl RNA or DNA in the blood and marrow. A 3-log reduction is a 1/1,00 or 1,000 fold reduction of the level at the start of treatment. Since the test had not been done at the start of treatment, we will be using my last test done three months after I began treatment. 

My PCR result was 5.9 x 10-2, for all of you veterans out there I am sure that you understand these numbers better than I do. I know that what I want to see on my next test is a reduction from there. I am hoping that my respite of ten days without my Sprycel, thanks to my lingering bronchitis, doesn’t cause an increase in these numbers. I am hoping that my diligent dose, at 10:30 am every day with the exception of those ten days will show a HUGE reduction in Bcr-Abl levels; Why not shoot for the moon, right?

Sunday, June 19, 2011

Chemo Brain: Just Call Me Scarlett!

Today is one of those days that my brain just is not working. I do not know if it is a medication thing or just plain retarded-ness. It began with my dance practice this morning. We have a competition in three weeks and have three brand new routines to learn. This being sick business has got to stop, as I am starting to freak myself out. Time is a wastin’ and I need to keep on goin’! My brain just could not focus on the task at hand. I was having trouble remembering the rhythms of each of the dances and my footwork. I felt like a “TT” (total tard.)

After my practice I had three hours to kill so I headed to the fabric store. I spent two hours, literally wandering around the store trying to buy some fabric to teach my granddaughters how to sew a skirt when they are with me next week. I found the fabric and then decided that we should make a few T-shirts to go with the skirt, and then I wandered into the craft area in a daze. I began to wonder if I was just in a trance from listening to the woman that was teaching a sewing class in the store. I have never heard anyone talk so continuously in my life; she just went on and on and on. Maybe if I had been in the class it wouldn’t have seemed so monotonous.

It is so frustrating when you know that you know what it is that you are trying to accomplish and yet it seems that no matter what you do, you cannot get it done. Don’t “they” say to just shake it off and get over it? Questions is, how do you “get over it” when you haven’t a clue what it is that you need to get over? See, I told you I was having a bad day, how in the world did I get on this subject?

Anyway, my brain is in a fog and my thought process is misfiring. When revisiting this year, I must admit that most of it has been quite a whirlwind. Maybe my brain is actually just trying to comprehend the fact that I really do have cancer; I really have leukemia. Things are now different.

I was diagnosed very quickly, not ever really suffering from any symptoms. I was thrown right into the hospital for treatment and then sent home on treatment. It all happened so fast that I don’t think that my brain has had a chance to catch up. Maybe the left side is trying to tell the right side something and it just doesn’t want to listen. Maybe I still have residual chemo brain. I wonder if that comes and goes.

I am not a dweller and I do have a unique ability of living in denial, yet taking care of business. Honestly, my mother probably should have named me Scarlett- “I can't think about that right now. If I do, I'll go crazy. I'll think about that tomorrow.”  Maybe today is the day that I should try and reconcile all of this new information…………………..Not! Maybe tomorrow, just call me Scarlett!

Friday, June 17, 2011

Life and Death: Good-Bye, Dear Nell

Two years ago I had the good fortune of meeting a very special and unique woman. Her name was “Nell”; she was 87 years old when we met. She was a true inspiration. I want to be her when I grow up! If I hadn’t known her age, I would never have guessed that she was a day over 75, at best. She was full of life and spunk. She would often hold my hand while telling me stories from her past. It seemed that as long as she held my hand, she had a connection to my heart.

She recently lost her husband of 70- ish years; I wonder if she died of a broken heart. I am blessed to have seen her only a few weeks ago. While we were having one of our little chats, I asked her how she was doing. She said that during the day she was alright, but at night she couldn’t sleep because she was a “cuddler” and with Albert gone she didn’t have anyone to cuddle up to; she said that her bed just seemed so big and so empty. She said that Chip and Sheri took such good care of her and how grateful she was to have them.
She showed me the ring that Sheri gave her to wear for Memorial Day; it was a HUGE glittery looking fire burst, like a large firework on the fourth of July. She said that it was so big that she couldn’t believe that she was wearing it, but Sheri wanted her to look nice, so she put it on. Then she said, “Sheri is just so cute, always wanting to take care of me!” She asked me to come out to lunch soon and told me that she would show me how to play Bridge. I wish that I had had that opportunity.

Nell passed away yesterday, quite suddenly. It seems as though she ate a good lunch and then said that she was having trouble breathing, was weak and wanted to go lie down. A few minutes later, while they were deciding to take her to the hospital, she simply stopped breathing; and was gone. No struggle, no wires, no tubes. She was just gone, in her own bed; just like her husband three months ago.

In my opinion, this is the way to go. Simply fall asleep and never wake up. She was at peace and in her own surroundings. My selfish side will miss her terribly; my logical side realizes that she lived a long and wonderful life; we should all be so fortunate. We will definitely be celebrating her life with tears of happiness for her, and tears of sorrow for those of us that remain. She will be sorely missed.

She was an inspiration, someone to aspire to. I will miss seeing her all dolled up in her matching outfits. She was always dressed to the nines with all of the matching accessories. She often took off her scarf and slipped it into my hand, as she walked out the door saying, “Here, this will look pretty on you.” I will miss her wry sense of humor and stories of days gone by, I will miss that little sunbeam and someday hope to have the grace and beauty that Nell had, at 89 years old.

The very last words spoken between us were; “I love you, and come and see me soon.”  I will always remember her looking into my eyes and squeezing my hand. I squeezed her back and gave her a hug; that was just a few weeks ago.

The lesson here, is that you never know when you are going to meet a “Nell”; when and if you have that opportunity, do not pass it up. It will enrich your life.  Don’t waste precious moments trivially. Live your life every day, as if it may be your last. You never know, who is going to walk into your life and touch it a special way. Do not miss the opportunity. Who knows, maybe someday YOU will become some ones’  “Nell.”
Good-bye, dear friend, you will be missed. I am blessed to have known you.

Thursday, June 16, 2011

Cipro verses Leukemia

This has been a pretty good week; the bronchitis seems to have finally found its’ was out of my body. The coughing is minimal and the low grade temp is gone. I finally have enough energy to start dancing again. This is a good thing as we have three brand new routines to learn and five additional dances to work on for our next dance competition at the Portland Dance Festival, in July. God willing, I will be well enough to keep practicing and to compete.

As we were practicing the other day, I had a surprising realization; it is much easier to dance with leukemia than it was when I was poisoned with Cipro. Cipro is an antibiotic in the floroquinolone family. It is a very powerful drug that was originally used to treat anthrax. They currently prescribe Cipro, Avelox and Levaquin at an astonishing rate, despite black box warnings and severe side effects. At the very top of the black box warning it states that Cipro is “Not a first drug of choice.” With the rampant illnesses floating around out there, I thought that now would be a good time to throw this information out there. I am not a doctor; only a victim.

It seems as though doctors and pharmacists alike do not “believe” the damage that is actually occurring to patients. They can be life changing and permanent.  They often state that the side effects are very rare. Truth be told, “Reported” side effects are very rare. Few people taking the drugs correlate a ruptured tendon or extreme all over muscle pain to their antibiotic. Many people are diagnosed with Fibromyalgia when in fact there pain was caused by their antibiotic; they just don’t realize it.

For me, it was a yearlong battle that was nearly crippling for several months with continued excruciating pain throughout a years’ time. Oddly enough, after going through chemotherapy, the muscle pain in my feet improved drastically. That improvement is what makes dancing easier with leukemia than dancing after being severely debilitated by an antibiotic that I should not have been prescribed unless absolutely necessary. That is the crime in the floroquinoline prescriptions; they should only be prescribed as a last resort, not as an easy fix. The risks just are not worth it. I could not have prevented my leukemia, but the Cipro poisoning could have been prevented. I am still angry about the stolen year of my life caused by that drug. Read more about Cipro poisoning here: Beware of the Antibiotic Cipro

Wednesday, June 15, 2011

Vicks VapoRub; A Childhood Memory, Thanks CML!

Isn't it funny how certain smells trigger certain emotions? I can actually thank my low white cell count for my recent visit down memory lane. For the first time in over forty years, I have been sick enough to search for any relief that is within my grasp. I have been battling bronchitis for the better part of one month. The coughing is finally much better, but at one point was so bad that it sent me to the cupboard under the bathroom sink. For any of you out there with children or that have frequent ailments, I challenge you to see just how many expired items that you have! I had a bunch; the expired cough medicine seemed to works just fine!

Robitussin DM worked for about three hours, cough drops helped, but it wasn’t until Joe pulled out the Vick’s VapoRub that I really had that overall warm and fuzzy feeling. The Vick’s brought back warm childhood memories of my dear mother, slathering that gooey stuff all over my chest and then adding it to the lid of the vaporizer. I am not sure whether it was the Vick’s or my mother’s loving hands touching me that made me feel better, but whatever the case, the smell of that Vick’s made me smile!

Joe also insisted on using Iodex.  Iodex is another gooey ointment from his childhood. It has a different aroma so I smelled real good! After using all of that up, we actually had to order more online as we couldn’t find it for sale anywhere.

After scooping the very last little bit out of the jar, I ran to the market to get some more. The last time that I remember purchasing Vick’s was probably some 20 years ago, when my children were small. It didn’t cost more than a buck or two for a huge container. NOW, Vick’s VapoRub is $15 for a small little jar. I was shocked! I mean come on; it is Vaseline with some camphor, eucalyptus oil and menthol, I think that I will head to the health food store and buy my own oils for next time; I’ll bet I can whip up one heck of a batch! I think that I shall leave the turpentine out. Thanks Vick’ for the memories………….

Tuesday, June 14, 2011

Sprycel (Dasatinib); My Return; A New Found Sadness Settles In

I battled bronchitis for a month. This battle included a short respite from my daily dose of Sprycel. Sprycel is often referred to as oral chemotherapy. My understanding is that is a TKI inhibitor. This inhibitor blocks the abnormal protein called BCR-ABL, hopefully resulting in a molecular remission.

There are many side effects that come along with Sprycel. I suppose the most life threatening one is a heart rhythm condition called “QT prolongation.” The other side effects include low white cell counts, that may lead to infections (hence the bronchitis), low platelet counts (which could cause bleeding), a collection of fluid in the chest (probably why my doctor took me off of it for ten days, while I had bronchitis), diarrhea, headaches, edema, low blood calcium levels, slight abnormalities in liver function tests, tiredness, muscle pain, skin rash fever, hair loss and yes there are more. Just like any drug, there are risks. One must always weigh the risks against the outcome. In my case, I have no option; it is either live with the side effects or die. It is a simple choice.

Not ingesting the Sprycel for ten days gave me the opportunity to revisit the person that I was before I got leukemia. I don’t really know how to explain this, other than despite the fact that I had bronchitis; I began to feel much more energetic and carefree. I thought that maybe it was because I was feeling better and getting over the bronchitis, but this happier, livelier person kept emerging, day after day. The sun just seemed to shine brighter. Towards the end of the ten days, I felt really good; I was really happy and full of life. I felt like myself again. I hadn’t even noticed the change and wasn’t even sure that it was real. I really thought that I was reacting to being well again.

That thought did not last long. The very day that I resumed taking the Sprycel, I noticed an overwhelming sadness. It wasn’t that I was actually “sad” per se, I was actually "happy", yet a sadness had set up shop in my soul. I know that this probably makes no sense at all, but it is there; I am happy, yet have sadness;  it is an oxymoron, for sure. I wasn’t thinking about the medication or the fact that I had leukemia. Taking the meds is now part of my routine and I really don’t think about it anymore. I really didn’t even put my finger on it until the second day.

Sprycel causes sadness in my soul; kind of like being embraced by a gloomy cloud. It is really hard to explain, but it is sort of like a cloudy day; while you may be having the greatest time of your life, if clouds are present, they create a different atmosphere than sunshine does. It is not a conscious sadness and it is not depression; I am still a “happy” person and a pure optimist, but I now am looking through smoke-filled glasses as opposed to rose-colored ones. The fact of the matter is; Sprycel makes me sad. Perhaps melancholy is a more appropriate word. When I figure it out and can put it into words, maybe I will write an update.

It is a very strange realization, one that I am not sure that I would have ever recognized if I had not been allowed to briefly revisit my old self. It is not listed as a side effect, but I wonder of others have noticed this change. I will tell my doctor at my next visit; my fear is that he will think that I am depressed. It is not a depression, it is not debilitating and it is not life consuming. It is simply a change in who I am; I prefer the old me, but I shall learn to like the new me, too. I will accept the fact that I now cry at more commercials than I used to and understand why the dead baby bird on the front porch haunted me for days. I felt so sad about the bird that I even cried for its’ mother.  Ugh, I have become a sap! I miss the other me…..

FaceBook: CML: A Place for Hope and Humor

#chronicillness  #bebrave  #chronicmyelogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #cancer sadness  #hopesanddreams  #gratitude  #grateful #neverloseyoursenseofwonder  #thrivingwithleukemia #livingwithcancer #wanderlust #wanderlustspirit

Monday, June 13, 2011

Seems as Though My Bad Luck is Continuing!

This morning I woke up to Google’s announcement that they are discontinuing my Adsense program. It seems that if they put related ads on your site and people click on them then that is not a good thing. Whatever, I will figure something else out while I appeal their decision.

With that in mind, I decide to head down to the fabric district in Los Angeles. I need new costumes for my dance competitions and since the costumes run in the thousands of dollars range, I have decided that in my abundance of free time to make my own. I have never been to the fabric district before and really hate driving into the city. Scary!

I followed someone on the internets’ advice and parked at a meter. I tried putting in quarters to no avail and was told that I needed to use my debit card. I put my debit card in and hit the plus sign to give myself two hours and headed on my way.

The fabric district is a plethora of shops; shops with fabric, trims and beads. I knew that I would need a ton of beads and had been told that the Bohemian Bead Shop was the place to go. Luckily for me it was right across the street. I went in there first and was overwhelmed by the amount of beads that were there. After wandering around a bit, I found the type of beads that I was looking for; there were tons of colors and sizes so I just punted. Since orange is the symbol color for leukemia, I decided to go with that. I picked out a bag of orange beads and then chose some emerald green beads and some clear ones.

Now I needed to find fabric. I was looking for a four-way stretch knit. The type used for bathing suits. I went into five different shops and finally found one that had a color that would match the beads. So far, so good. I went into another shop that had appliques; now this was a bit more difficult; there were so many and I really did not even know what I was looking for. I finally chose a large applique for the front and four smaller ones for the back. Mind you, I haven’t a clue what I am doing.

Worrying about my meter, I can see my car and have to cross two streets to get to it. I have been gone 58 minutes. I am thinking that I have two hours, but want to check it anyway. Besides, the beads and the fabric are very heavy and I want to unload them. Just as I am putting my purchases into the trunk, a bicycle cop takes a picture of my license plate. I said, “What are you doing?” He said, “Giving you a ticket.” I said, “What for?” He said, “Your meter is expired.” I said, “You’re kidding me right now? It just this very second expired and I was waiting for traffic to get into my car.” He said, “Sorry about that, the picture has already been taken.” Fabric: $59.27, Beads: $81.22 Appliques: $8, Parking ticket: $58 Aggravation: Priceless. So much for bargain shopping in LA!

I have every intention of fighting Google AND the LA Parking Violation Department. Talk about luck; oh, well, on the upside, I love my beads and fabric, now if I can only assemble them into one bodysuit with eight different skirts and thousands of beads by July!

And the Beat Goes On….Lah-da-dah-dee-deeee….Lah-dah-da-dee-dah-ah!

Sunday, June 12, 2011

10 Days Off of Sprycel(Dasatinib)

After taking Advair for four days, my chest finally began to clear up. Despite the fact that I have been sick for 3 weeks, I have noticed that even though I have been coughing; I am not nearly as tired and draggy as I was. Of course I am wondering whether I am just finally getting over my bronchitis, or if not taking my Sprycel has something to do with it.

I had also been wondering if the coughing and chest cold was directly related to the Sprycel or if I had really caught the virus that is going around. It is highly unusual for me to catch anything. I typically only get a cough, once a year in October, and never even feel sick. It shows up; I cough for a few weeks and it goes away. No one ever catches it from me and I think that it begins as an allergy and turns into bronchitis.

This time, Joe finally obliged me and started getting the same crud that I had; about two weeks into my illness. While I said that I was sorry that he was sick, I was also glad that he was sick because it probably meant that it had nothing to do with my Sprycel or leukemia; other than the fact that my immune system currently sucks. I guess misery really does love company! Hopefully it doesn’t mean that I am going to become one of those people that catch everything that floats through the air.

The timing of all of this was really poor, as Joe was actually on vacation. I suppose being sick on vacation was probably better than having to go to work sick, so I guess it all worked out. He had ten days off and we had had lots of plans for projects around the house. Instead of doing the things that we had planned, we spent; hours sleeping, hours in front of our computers and hours in front of the television. Towards the end of the week, we did manage to get out to the Malibu Wines winery and to see a movie. We had a LivingSocial deal that was expiring, so we made the effort and saw Pirates of the Caribbean. Not epic but at least entertaining. Not to mention that it got us out of the house.

I am also thanking the “Gods of the Universe” for our prior decision to not attend the Frezno Dance Classic. We usually go to that dance event and compete; this year we had decided to go to the Portland Dance Festival instead. It was a lucky decision as I would have been too sick to go. Hopefully this bout of illness means that I will be well enough to go and compete in Portland, in July. I am a bit stressed about that because we have three brand new routines to learn and I have been too sick to go dancing for the past three weeks. I better get better and get busy!

With only two days left, we tackled the family room. Painting that room has been on my list for over 6 months. The paint was in the garage calling my name and since I needed Joe to help me move the furniture and to be around to call 911 if I fell off of the high ladder, we dug in and got it done. I painted while he froze tons of green beans and snap peas from the garden. Eventually he ran out of veggies and helped me finish the painting. Having accomplished something during that vacation made the both of us feel good; it hadn’t been a total bust. Talk about being slugs for a week.

I will begin taking my Sprycel again in the morning. It will be interesting to see where my blood counts are after this current episode and to see how I feel.


Saturday, June 11, 2011

Leukemia Ups and Downs; or Should I Say Downs?

I must admit that I have been cruising along quite well for a week or two. It seems that leukemia has a warped sense of humor; it teases you by almost allowing you to think that your body is starting to adjust to its presence and is actually learning to co-exist. Not! The joke is once again on me!

I started feeling like crap again; nothing in particular, just plain crappy. I have no energy, a low grade fever and just feel kinda’ achy.  I will be curious to see what my blood reveals next week as I have another appointment with Dr. Paquette.

Fast forward: I am still feeling crummy and my blood results indicate a rise in my white cells. They are 7,650 almost twice as high as usual; which is a good indication that I am fighting something. My reds are just a touch low as are my platelets. Dr. thinks that I am probably fighting a virus that is running rampant throughout our area. He sends me home and tells me to email him if I get any worse and that if my temperature rises to 101 degrees to go to the ER.

One week later the cough begins. It starts with a loose cough in my chest, I am OK with that. This continues for five days and then settles tightly, deep in my chest. Fortunately I still have an inhaler of albuterol from my yearly bout of bronchitis. I send an email to my doctor and wonder if he will actually respond. He does, and in record time; he tells me to use the inhaler and report back to him at the end of the week. I am loving modern technology AND my new doctor!

A week passes and I am still coughing and feeling miserable. I let the doctor know and he says to go off of the Sprycel for now.  Go off of the Sprycel; really? I am shocked and freaked out at the same time. I have been told that this medication is my lifeline; I have been told to be diligent about taking it. Taking it not only every day, but taking it at the same time every day; never forgetting. My molecular remission depends upon my diligence.

So I get up, and do not take my pill. I wonder how this will affect my cough and my overall general feeling. I also email the doctor and suggest Advair; that seems to be the medication that really knocks my bronchitis out of my chest. I do not know why I didn't think of it before, but I think that all of this coughing has finally rattled enough brain cells to the surface, that I finally remembered. He calls in the prescription and tells me to report to him again, in a few days. Hopefully this will do the trick.

Friday, June 10, 2011

Living with Leukemia (CML)

I think that the biggest challenge in learning to live with a chronic cancer is adapting to the limitations to your everyday life.  Throughout most of my life I have been very, very healthy. With the exception of one other health scare, I just never got sick. I do believe that previous sentence is what led me astray in my previous posts.

In my mind I was comparing the two diseases. The first being ovarian tumors, the second CML. The first illness (ovarian tumors) required a very intensive surgery; removing body parts. After recovering from the surgery, the only follow up was frequent checkups and CAT scans; no lingering effects.  The second required chemotherapy, to destroy the cancerous cells and leukapheresis to remove them. The aftermath of this disease is that you must continue to treat it and learn to live with it. The first disease could be removed; the second remains; it continues to flow throughout your body, every day. You carry it with you wherever you go.

Living with chronic myelogenous leukemia takes some getting used to. I am beginning to realize that my super-charged, previous haphazard lifestyle no longer exists. I cannot make “plans” and always expect to be able to carry them out. I must accept the fact that my life now revolves around blood tests, doctors and medication side effects. I do not dwell on these things but they are apparent every day in one way or another.

Whatever I decide to do must be decided on a day to day basis. The most evident reminder of this issue is the fact that I was unable to attend the birth of my newest grandchild. I was sick when he was born; and am still sick three weeks later. It just hurts my heart to have not yet met him and been able to hold him in my arms. I was present for the birth of my other four grandchildren and am saddened that I was not there when he was born. He is already over three weeks old and doesn’t even know that I exist. Between me being sick and them being sick, I have had to settle for pictures. This totally sucks!

Other constant reminders are all of the Wednesday night dances that I have missed. I know that may not seem like a big deal to you, but it is to me! I mean come on; it is only four and a half hours a week. You would think that that would not be too much to ask. I am amazed at how many practices and dances that I have been unable to attend.

Some days I am even too exhausted to do a load of laundry, I buy flowers with intent of planting them and they sit in their containers’ for weeks. The paint that I bought last year is still in the can, my closet is an upside down mess and my website has been neglected. I haven’t been able to visit my family and often fall asleep watching a movie. I feel as though I have aged 20 years in the blink of an eye.

I long for the days when I could make plans and keep them; wake up and be ready and raring to go. I want to look into the mirror and see the girl that used to have color in her face and more hair on her head. I want to feel energetic and exuberant. I want what I used to have and now know that I should have cherished it more. I suppose that this is typical during all phases of life; when you are a small child you want to be a teenager, a teenager wants to be an adult, an adult wants to be a kid. If we are not careful, we will spend our entire lives wishing them away.

Despite the fact that I now have leukemia, I intend to make the most of every day and to “do” when I can; and allow myself to take it easy when I can’t.  Eventually my body will adjust to the Sprycel (Dasatinib) and I will regain some stability and strength. I am confident that in time these adjustments will become easier and I shall learn to cherish my new journey and stop mourning my old life. I guess I am just sick and tired of being sick and tired!

Thursday, June 9, 2011

Ovarian Cancer Surgery Kicked My Butt; But I Survived!

I was warned that it would take one year for me to recover from that abdominal surgery. I did not believe my doctor as I was incredibly healthy and in great shape. I walked 5 miles, five days a week; in the mountains. I was active, ate healthy and exercised; it couldn't possibly take that long to recover from one little surgery.

Well, I was completely fooled and in denial. I had never been so sick before in my entire life. It wasn’t the surgery per se but the complications afterwards that almost got me. “They”, whoever “they” are, often say that it isn’t the disease that kills you, but the cure. This was definitely one of those situations. And yes, it DID take me an entire year to recover from that little episode!  I was appalled at how quickly my body failed me. It almost shut completely down. Every ounce of muscle that I once had, just disappeared.  Breathing was now an effort; walking even more so.

Me and Peg; before surgery!
I could hardly recognize myself after I got out of the hospital. I wasn’t allowed to return home, as I lived two hours away in the mountains.  The Pegster to the rescue! My dear friend Peggy literally allowed me, my son and our dog to move into her condo for that month. God bless her for putting up with the likes of the three of us! I was like an emaciated zombie, my son was in oblivion and my HUGE lab just wasn’t used to golf course living. Despite all of that, she graciously housed and nourished us along our way. My poor mother visited every day and brought me “things”. It was so hard to see how worried and sad that she was for me. It breaks my heart that I am now sick again; it is so hard for her.

My goals were small; eating and walking. For the first time in my life, food was not only unappealing, it was also nauseating. One of my greatest fears was that I would never be able to enjoying eating again. What, no “lunch’? Walking from the bedroom to the bathroom was a chore. After the first week, I forced myself to walk across the street. It took me fifteen minutes. I had no strength and no focus. I simply existed, allowing my body to heal, trying not to become depressed.

Once I got the OK to go home, my daughter came with me so I that I would not be alone. Just going home helped my mental state tremendously. I began to feel like someday I would be well again. I lived in an upside down house, where my living room was on the top floor and my bedroom one floor below. I would make one trip down the stairs at night and one trip up again in the morning. It was excruciating. My little grandson would ask to see my belly, he called it my “Franken Belly” and God bless him, he would kiss my big owie; now that is love! I could barely stand to even look at it!

Eventually my mind and appetite returned. I began to knit and made tons of baby blankets, sweaters and scarves. It was the only activity that I could do. It was pathetic! After several months, I was able to start taking short walks outside, and before I knew it, 6 months had past. I was beginning to look and feel a bit like my old self. I could see the glimmer of light at the end of the tunnel.

“They”, the powers of be, say that what doesn’t kill you makes you stronger. I am here to say that it DID take me a full year to recover from that condition, it was long and it was hard, but I suppose in some strange way it prepared me for my current battle; my battle with chronic myelogenous leukemia. Lucky me, for lessons learned. Now if I could only figure out whom in the world that I have pissed off!

Wednesday, June 8, 2011

Fighting for My Life; Literally! I Have Been on the Brink of Death; It is Not a Scary Place.

I was sliced open from above my belly button to my pubic bone; it was a “BEEG Cut” as Dr. Jacome said. My greatest concern prior to going into surgery was whether or not they would get the many feet of intestines back into my body the same way that they were, or would they go in funky and be all uncomfortable. Dumb fear, just like Dr. Genesen (only the kindest and most compassionate doctor in the universe) said, “They will plop right back in there, just like they were.” He was right. The other major concern was what sex would be like with all of my missing parts. I am pleased to report that there was no difference in that department. Everything still works; Score! My real concerns should have been my recovery….duh!

I was in the hospital for 12 days; four of those days I literally didn’t care whether I lived or died. I did not even think about it. I was in oblivion. Being in that state is quite interesting; it is as though your instinctive “fight for survival” just disappears, it evaporates without notice or warning. You no longer feel anxious, sad or afraid.  A serene peacefulness just encompasses your body and soul, and all is right with the world. You no longer have that instinctive urgency to fight to live; you just want to close your eyes and stay in that happy, peaceful place. It is a very odd place to visit, yet having been there I can now understand how terminal patients may feel at the end of their life. Happy, content and at peace; certainly not what I had expected. I would have thought that I would have been kicking, fighting and screaming until I gasped my last breath.

Of course, during those four days I had an intern nurse with me 24 hours a day; shaking my feet, forcing me to drink water and just plain annoying me to no end. At one point he said, “Come on, Michele, you blood pressure is falling to 50/30.” I replied, “So, What do you want me to do about that? “Please just leave me alone.” I wouldn’t allow anyone to open the shutters or turn on any lights. I was sick, I was tired and I just wanted to go to sleep. Of course, now I am very grateful for all of those annoying people, prodding me and forcing me to do things that I did not want to do; because now I get to be here to battle my next challenge; leukemia. Why in the world would I not want to stick around for that party!

Yes, that is just my sarcastic humor. I have never regretted, for even a single moment, living through that experience. I have enjoyed many blessings since those days and still am totally enthralled with life. I am ready to fight for it and hope that my battles will keep me from entering into my previous state of oblivion. 

Bricks for the Brave!!