This sure wasn't in my plan, but it is my journey! To follow my story be sure to go to my first post as I am attempting to write this blog chronologically. Blog Archives are on the lower right hand side of the blog.
Saturday, April 29, 2017
A Slap of Reality
The reason for this is actually quite simple and pure; it was because I really had little to update, little to complain about, and little to report. Life has been good!
My fifth year of living with leukemia has been my very best year, during this journey; in terms of great pcr test results and lack of side effects, from my life saving medication Sprycel; I have actually felt like a normal human being; most days.
So my lack of posting was simply due to the fact that I was actually able to get out and enjoy my life! What a blessing and joy it was; I had forgotten what it was like to not have the cancer cloud, raining on my parade, every day. There were times that I even felt a bit guilty; seeing so many others suffering, with either out of control CML, or severe side effects from their medication, while I was dancing through life.
I tried to empathize and support those I could, while I continued to marvel at my good fortune. I felt darn good; my leukemia was nicely under control, and I prayed that this would continue....forever! I felt so very blessed, yet somehow undeserving.
Well, guess what??
This time it is not from CML, but from the treatment. So here we go; as with all things in life, you just have to take the good with the bad, and roll with the punches!
Sick of the cliches? Me, too!
Anyway, it wasn't until we were driving home from my second thoracentesis in a seven week period, that the gravity of my situation hit me hard. At first I did not grasp the full implications of what was actually going on, but the switch on the light bulb suddenly flipped, and it was clear. I have reached a crossroad. I still have cancer and I am not the one in control; choices and decisions will have to be made, and for those of you that know me, living in denial is my preference. Just call me Scarlet, "I will think about that tomorrow!" And tomorrow has come......
You see, I have dealt with the common side effect of pleural effusion for the past six-plus years, and thus far it has been nothing more than an inconvenience. I would take a short break from Sprycel, the effusion would clear and I would go back on my meds.
My oncologist and I have tinkered with my treatment, to find the lowest dose possible, to acheive the best pcr test results, with the least amount of pleural effusion complications. I have fought to stay on this drug as it has given me optimal pcr results, while allowing me to still have an acceptable quality of life. I know it works.
I have my own aversions to the other TKI's on the market and whether justified or not, it is how I feel. I have read, researched and observed everything and anything that you can find regarding the treatment of CML, and have come to my own conclusions.
I have discussed my thoughts with two of the top CML specialists in the world, and they understand my concerns and reservations, and have been on board with helping me to choose the best treatment option, for me.
But NOW, here I am with three thoracentesis under my belt, or should I say rib cage, and it is becoming increasingly obvious that my journey on Sprycel has possibly come to an end.
The realization that I really DO have cancer and that having cancer is a serious matter, suddenly hits me like a ton of bricks. I no longer feel light hearted and invincible; I now feel scared, confused, indecisive, and a bit fragile. I didn't realize, until now, how lackadaisically I had been living. This is a harsh reminder and very sobering.
A new medication could control my CML beautifully with no side effects at all; this I am throwing into the universe as my preferred choice; but there is always the chance that it will not control my CML at all, or that I am either terribly miserable or have a life threatening reaction.
It will be like starting over; my body will have to adjust to the new treatment and all of the worries, aches and pains that go along with introducing a new potent drug into your system will be present; this most likely will not be a walk in the park; remember that I said year five was my best year??? Meaning it took my body five years to fully adjust to Sprycel; will it take five years to adjust to the next one? Will I ever adjust? Will it work? Am I up for the challenge? UGH!
Another disturbing fact is that I will be eliminating one of the life saving medications available to treat CML, from my options. Granted, Sprycel and I have had a pretty good run, but this will limit my options; which could limit my lifespan. This is not something that I have let creep into the dark places in my brain for a very long time, but being smacked in the face with it, it has given me reason to reflect; to be grateful for the time I have had, and to remember to take nothing for granted; there are no guarantees and you never know when things are going to change.
I suppose that if the timing was a bit better, this hiccup in the road may not seems so monumental, these choices may be easier to make, and I wouldn't be feeling such despair.
You see, I was tricked last year by feeling so good; I felt so good that we planned a month long trip to Europe, and that trip is due to start in a month. So what does one do? Starting a new potent drug and leaving the country does not sound wise, so the current plan is to check the pleural effusion size before leaving and have a thoracentesis before I go, if need be, and to lower my dose while I am gone, and see what the numbers tell us when I get back.
It sounds like a viable plan, except for the fact that I am still coughing after the second thoracentesis, so that has me really concerned; this is not typical, for me.
I suppose it is time to wipe the tears, pull up my big girl panties, call my doctor and see what's up!
I have got to come up with a solid plan.
Till next time, Be Well!
Thursday, April 27, 2017
And the Doctor Says....ANOTHER Thoracentesis!
Well, that is how my mind and body works, whenever I have a pesky little side effect that rears its' ugly head. My greatest nemisis, since starting my journey with CML, is pleural effusion. This is not to say that my life saving medication, Sprycel, does not have other annoyances, too, because it does, but the pleural effusion is, and can be a serious side effect; potentially leading to serious complications. But on the other hand, Sprycel has been quite good at keeping my cancer at bay and my PCR at an optimal number, while allowing me to continue to enjoy my life.
That being said, I had 1.8 liters of fluid drained from my pleural sac seven weeks ago; and today I am still coughing, as a matter of fact, I am back to coughing just as much as I was prior to the thoracentesis, which is not a good sign.
So despite the fact that it has not been very long since my last procedure, I tentatively make an appointment with my local doctor. While I am there, we discuss different possibilities for this lingering cough, but figure we might as well rule in, or out, the possibility of more accumulated fluid.
Much to my dismay, with my untrained eye, I see a pleural sac full of fluid, and I know what that means; back to see my "friends" for another thoracentesis. I am pretty disgusted on one hand, and relieved on another. I am glad that there is a "reason" for the ongoing cough, yet I am very concerned about what this might actually mean.
What I am most concerned about is the realistic fact that these continued effusions may force me off of Sprycel and on to another TKI. I am not thrilled about this, and tomorrow, I will tell you why.
For now, I will just tell you that they certainly remembered me from my last thoracentesis! They quickly stated that they will not be taking any more than 1.5 liters out, so as not to cause the coughing attack and pain that occurred the last time, when they removed 1.8 liters, and then they cautiously continued with the procedure.
The same tech came in and "Oh, I remember you! You are the reason that I now use the "snap" lidocaine before I use the needle. " I told him that I remembered telling him that he should and I remembered him trying it on himself! We laughed about that and then we got started. I must tell you, that I really wasn't looking forward to having a needle stuck in my back, between my ribs, but in all honesty, it really is not THAT bad. Yes, it hurts, but only for like maybe three or for seconds. The anticipation is WAY worse than the actual procedure.
We inched along, with a few short breaks and took 1.5 liters of fluid out of my damn left pleural sac, by stopping at that amount, I thankfully did not have the same complications that I had before, and was able to leave shortly after the procedure. I am still in awe of the amount of fluid build up, in such a short period of time. Let's hope this does the trick!
I am praying that my cough goes away, and that I do not have to return before my month long trip, but at this point, I almost feel that that it is a guarantee. I wonder if this procedure gets better or worse with familiarity?
After getting home, I talked to my oncologist, and we agreed that I should take a Sprycel break, and then try and lower my dosage to get me through my trip, and then see what the pcr numbers tell us.
He also asked me how I felt about Bosulif......Oh, the joys of living with Chronic Mylogenous Leukemia!
Wednesday, April 26, 2017
Days After Thoracentesis Tick By; I Am Not Happy!
|I Will Survive!|
In the past, when I had the fluid removed from my pleural sac, my coughing ceased almost immediately. I was so looking forward to this benefit, but this time, it did not seem to happen.
For any one that has had a dry hacking cough, for any length of time, you will know how weary, I am ! It is so frustrating, annoying and yes, even depressing. There was a short period of time, during the first few weeks following the procedure, where the coughing had waned enough for me to walk on the treadmill mill, thirty minutes a day, and actually do a few daily chores.
This did not last long, and the coughing became worse. Oddly enough, the coughing mostly occurs when I stand up and walk around; when I sleep, or sit on my dead ass, I am pretty good. This, for me, SUCKS! I mean seriously, how many cute crochet animals can one person make??
And if I am to be honest with you, this is really the least of my problems. The BIG picture here, is that my run with Sprycel, six years plus, is most likely coming to an end. I have spoken to my oncologist, and he asked me how I felt about Bosulif; of course, being me, I researched the side effects; one of which is pleural effusion, and checked with others who are taking this drug; I do not love what I read or I hear.
To complicate matters, we have a month long trip to Europe planned, six weeks from now. The last thing that I want to do is to switch TKI's and leave the country, not knowing how my body will react to the new drug. I mean really, can you see me on a twelve hour flight with chronic diarrhea, throwing up??
Soooo, here I am; what to do? I am currently on a Sprycel break, oncologist approved, and then we are going to lower my dose, go to Europe, and see what the numbers tell us, at least that is the current plan.
If I cannot get this cough under control, I do not know WHAT I am going to do! I am using Advair and Allbuterol, drinking herbal teas and honey, using oils and cough drops, and praying. And as if this is not enough, now I also have thrush! It has been raining and pouring in Boise, and I am ready for the storm to stop.
I guess I will contact my local internal medicine gal and see what she has to say........until then, be well.
Saturday, April 22, 2017
Let Us Suck the Fluid from My Pleural Sac!
|I few months ago I hiked way down here!|
As nice as it was visiting with our friends and family, it is always nice to be back in our own bed, in our own space.
Next on the agenda is to have a thoracentesis for the excess fluid that has decided to call my left pleural sac home. This is something that can occur while taking Sprycel, a medication for chronic mylogenous leukemia.
Pleural effusion seems to be the most annoying of the side effects of Sprycel, for me. This is the second time that I am having a throcantesis, in six years. The first one was actually quite easy; they did the procedure and I left feeling great.
This thoracentesis did not go quite as well. I cannot complain about the actual procedure, while it was a bit uncomfortable, it was not what I would consider painful. I knew that I had a very large pleural effusion and was prepared to see a lot of fluid draining into the container on the wall.
What I was NOT prepared for was the effect it would actually have on my lung and on my body. After the first container was full, a new one was attached to the vacuum. As it reached the 1.6 liter mark, I began to cough intermittently; as it reached 1.7 liters the cough was getting worse and constant. The gal that was keeping an eye on me, tried slowing the flow, to see if that would help, but by the time the fluid reached 1.8 liters, I was coughing uncontrollably.
She quickly removed the catheter in my back. The coughing became almost violent and I had pain in my chest, my shoulder and my neck; this was no fun!
The tech that performed the procedure came in and observed my writhing and continued to monitor me for about an hour. They called in some head honcho guy and he wanted an X-Ray to make sure my lung had not collapsed or suffered any other damage.
It had not.
They explained that the reason for my reaction was the fact that the effusion was so large, and my lung and been so scrunched up, that upon re-inflating, it was very, very angry!!
I am thinking that the next time I do this procedure, I will not wait for so much fluid to accumulate; the last one was a piece of cake, compared to this!
Some may ask why I do not switch my medication, and I know that there will likely come a day that I must, but thus far, I have been quite content with my response to Sprycel and my quality of life. Last year, year five, was AWESOME! Hardly any side effects at all, except the PE. Response was all below the optimal .1% and I felt pretty darn good!
So I guess I prefer to stay in bed with the devil I know!
Let's hope this thoracentesis does the trick!
Tuesday, April 18, 2017
CT Scan and a Hug from Above!
|Mom, in the middle of crazies!!|
Of course these scans must be done both with and without contrast, so that means it will be a two day process. Now, after all of the running from here to there, to visit kids, grand-kids, mother and father, sisters and brothers, Joe and I were really looking forward to spending a few days of down time, in Palm Springs. It is always our hope to just take a hike into the canyons, or to sit at the pool and relax.
Of course, this just NEVER happens! This trip we have been here 3 times and every single time I have had a medical appointment of one type or another; everything from blood draws, to mammograms. Now we must add two days of CT scans.
I managed to get two appointments before we were heading to Phoenix, and luckily, the condos where we stay, are right down the road. One of the issues with these CT scans, is the contrast that you have to drink to prepare for the scan. Not only does it taste terrible, it often causes severe stomach upset, cramps and diarrhea; so much fun!
So naturally, I want to have a day to recuperate, prior to a seven hour ride in the car. I suck down my two bottles of contrast and head to my appointment, already feeling nauseous. I just hate this part of the drill. I get my scan done, grab a little sneak peek of the scan, and the tech shows me the impressive pleural effusion that I have going on in my left lung. The tech just couldn't believe the size of the effusion, and marveled at the fact that I was not as impressed! lol
I told him that I was aware that it was there and was planning to have it drained when I got back home. I explained to him that this was a recurring side effect to the medication that I take to control my chronic mylogenous leukemia. He said he was really sorry, and that he would see me the next day.
Upon leaving the office, I knew that Joe must be starving. Despite being nauseous, I suggested that we go to our favorite breakfast/lunch spot in Palm Springs; "Bit O' Country," so that he could get a bite to eat. While we were there, I decided to have a piece of toast and an egg.
While trying to force down some food, all I could think about was that I wanted my mother! I was worried and nervous about my test results and I didn't feel good and I wanted my Mom. It has been just two years since she passed away, and since she lived in the Palm Springs area, there are reminders everywhere, that she is no longer here.
I quickly sat up, my eyes wide and said YES! I would LOVE some rice pudding. I told Joe about my mom and rice pudding and wondered out loud whether the rice pudding would be like my mothers, or not. I swear, in all of my years of eating rice pudding, that no one made rice pudding like my mother; not sticky and not too sweet. Tony brought us two bowls of pudding and it looked just like mom's; not only did it look just like mom;s, it tasted just like mom's!
I told Tony my story, and he said that he believed in signs and was so glad that he was the vessel used, to bring me this sign of love, from my mother. It was rather remarkable and while I was a teary eyed mess for the rest of the day, I had never been so grateful for a simple bowl of rice pudding!
Saturday, April 15, 2017
The PCR Debacle!
This, coupled with the fact that my oncologists are in California, and we teach dance at a New Year's Eve event, we are often just running and driving from one place to another.
This year was no different, with a few extra health hiccups to throw into the mix. First hiccup resulted when my PCR (blood test that measures the degree of leukemia in my body) came back at .15%, which in itself is not necessarily a "bad" result, it was just that it was a 2 fold increase from my PCR test, three months prior, which can be concerning.
Fortunately I was able to have the test mailed to a friend, and was able to pick it up and put it in the refrigerator. After calling three local labs, I found that this was going to be a difficult task; they had never heard of a PCR test and wanted $40 to $100 just to "look" at the kit, and then MAYBE I would be able to make an appointment to have it drawn. Needless to say I was totally exasperated, worried and annoyed!
We only had reservations at our time share for a few more days and it didn't look like I was going to be able to have my blood drawn prior to heading to central Ca. for ten days. Talk about frustrating!
I finally took the kit, drove to the cancer center where I was originally diagnosed with Leukemia, and knocked on the locked door where they draw blood. It was five till five on a Thurs. and I was surprised that they even opened the door. A woman named Peggy, happened to be there. and she just happened to be the head of the department.
She assured me that she would keep it refrigerated and that it would be alright until we came back in ten days; she told me to just knock on the door and she would draw the blood and mail it off; I have no idea how I skirted the red tape, but Peggy was an angel, sent to me when I most needed one!
Upon our return to the desert, I went directly to the cancer center and had my blood drawn; it was quick and easy, no questions asked. We all did a "good juju" dance over my blood and sent it off.
Fortunately, the result was the best it has been all year; .048 So I guess I will chalk up the elevated test to lab error?
Prayerfully, in three months time, I will still be below .1%
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