Thursday, May 25, 2017

Double Check the Pharmacist

Yesterday while on the phone with Briova/Optum Rx, ordering my next month's supply of Sprycel, the gal on the phone asked the same questions she always asks; one of them being, "Did you skip any doses of your medications, due to side effects?"

I told her that yes, I had; due to pleural effusion. She told me that I needed to speak with the pharmacist before they could ship my medication. I figured I was more aware of the side effects of Sprycel than she was, but figured that maybe at least my side effects might get reported, so I thought that I might as well get the most bang, for my buck and give her the full gamut of side effects.

I told her about the pleural effusion, and her response was, "Really?"....my response was, "YES! REALLY! It is a common side effect in CML patients." I told her of the muscle aches, nerve and joint pain, headaches and chronic fatigue, too. Once again her response, "Ohhhh, really?" "Yeah, DUH!"

At that point I decided to tell her about my findings that different Lot numbers seemed to deliver different side effects, and she got all excited! She said "Yes!! I remember hearing something about that; can't be sure it was regarding Sprycel, but I DO remember hearing something about that!"
Now, I am thinking, "REALLY?? Aren't YOU the one that spent many years in school learning about drugs, and their affect on the human body?" UGH!

I then asked her if she was going to be reporting these side effects to the drug manufacturer, in hopes of enough complaints resulting in a lesser, acceptable, "margin of allowances" during manufacturing. There apparently is a specified percentage, during manufacturing, that the ingredients, in a medication, must fall between; so a little more of this, or that, or a little less of this or that, and the drug is still within these parameters and therefore acceptable. I believe that this is the difference between a good side effect month, and a bad one.

Any way, I though that while I had her on the line that I would ask her about the drug interaction between Zolpidem (Ambien) and Dasatinib (Sprycel). I recently asked my doctor for a sleeping pill, so that I could sleep on our red eye flight from Los Angeles to Paris. Being that I have never taken a sleeping pill before, and the fact that I am a total Pill freak; meaning I am afraid to take ANYTHING, I asked her for six pills, so that I could try it out at home to see how it affected me, prior to getting on the plane. I have now had these pills for six weeks, and have yet to take one! lol

My plan was to ask my oncologist if it was safe to take with Sprycel, as I take Sprycel right before I go to bed. But since I had the "expert" on the line, I asked her. She said, "Let me look, nope, no interaction. Let me check one more source; Nope, go ahead and take it, there is no interaction between the two."

Of course, I did not take the pill last night, and some random ad popped up today on my FB about some random drug, and I clicked on it. It had a place to put in Drug Interactions, so I did. And what do you think I found?

A "Moderate" interaction between Sprycel and Ambien!! I was so disgusted that I decided to write about it!

Interactions between your selected drugs
Moderate
zolpidem  dasatinib
Applies to: zolpidem, Sprycel (dasatinib)
Dasatinib may increase the blood levels and effects of zolpidem. You may need a dose adjustment or more frequent monitoring by your doctor to safely use both medications. Contact your doctor if your condition changes or you experience increased side effects. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

I mean really! I find information about drug interactions through Google, and get different information from an actual Pharmacist! WTH??

Once again, watch out for yourself! Be careful and do your due diligence. I am sure that the interaction is probably not serious, but what if it was?

I will be contacting my oncologist prior to taking the Zolpidem/Ambien, always do my own research and continue to ask LOTS of questions!

Here is a great place to check drug interactions: https://www.drugs.com/

Any one have experience with sleeping pills?

Tuesday, May 23, 2017

Two Week Sprycel Vacation and the Return....Life!

It wasn't until the second week of my Sprycel vacation that my "old" self started to return. I was still coughing like a banshee, but DAMN I felt GOOD!!

The old "giddy",  happy-go-lucky, feel good inside, "me",  began to emerge from that place; deep down inside, where it sleeps, when I am on Sprycel.

I do not know where it goes, or why it disappears; it just does.

I started actually sleeping at night; what a TREAT! OMG, I totally forgot what it felt like to "sleep"! Every morning I marveled at how rested I felt, yet I hated that I could not take advantage because of my constant coughing. My mind was clearer, my hands and arms did not go numb during the night, my whole being was rested, and I had JOY pouring out of my body and soul. What a treat.

I would literally break out in a jig, for no reason at all; I didn't even care that I had to take ten minutes to recover from a coughing attack. I walked around with a smile on my face, and I enjoyed every single minute.

But like many good things, it came to an abrupt end. After two weeks, I started taking Sprycel again. My arms went back to being painful, dead arms at night, which contribute to my lack of sleep, the grey cloud returned and dampened my joy, and the veil of brain fog returned. It is crazy how one little pill can affect so many things. But hey,  on the upside, I was back on the battle field; slaying leukemia!

These past three months have been a harsh reminder of how a certain "Lot" of medication can make or break how you feel. My "HH" Lot numbers have SUCKED! It seems as though the most affected area have been my hands and arms; they go into this painful, numb state, during the night, while I attempt to sleep.

It is frustrating, annoying and down right inconvenient. Remembering what it was like to sleep at night, during my break was sheer bliss. I wish that the drug manufacturers could be more consistent in their production of these powerful drugs, and were able to alleviate more of the side effects which come along, with taking them.

I retain my stance that last year was my best year ever! If I could only go back to that run of Lot numbers, I would be ever thankful. In an attempt to find the golden stash of Sprycel, I did request that my Sprycel order come from a different warehouse this month, and I took the first pill from the new bottle, two nights ago; it seems as though my arm issues were a bit better the past two nights, so I am hopeful that will continue to improve. Of course, I did wake up with mouth sores and the start of a "cold sore" on my lip! HAHAHa, so I started the Acyclovir this morning!

Com si com sa.

Chronic Mylogenous Leukemia certainly keep one guessing.............

Tuesday, May 16, 2017

Meeting the Cardiothoracic Surgeon

Off to the surgeon!
I was quite fortunate to secure an appointment with the top cardio-thoracic surgeon, here in Boise, in a timely manner. Which is a great thing, as I am not a very patient, patient!

On our way to meet with him, I literally made myself ill! I was a bit dizzy in the head (more than usual), nauseous, heart pounding and shaky. I kept telling myself to breathe, and that I was just freaking myself out. Which my brain knew, but my body could not comprehend.

That is what I get for actually "thinking" about what "might" happen, as opposed to taking my typical approach to things; denial!

I guess I did not realize just how terrified I actually was until I started going over my list of questions for the surgeon. I quickly popped a meclazine into my mouth, and swallowed; I did not wish to throw up...lol

I thought it prudent to be prepared, but did not expect that it would affect me so greatly.

At any rate, I can thank the promptness of my medical experiences here, for not allowing me further time to freak out! As soon as I checked in, I was called back to the examining area, which means weight, blood pressure, how are you feeling, do you have.....etc.

This focused my brain to the present and calmed me down to some degree. Being that I have been dealing with these effusions, and cough, I have been to do doctors' office way more frequently than I have in years. This is NOT fun, to me!

I hate answering all of those questions because to be frank, I do not have a good answer for any of them. There is no yes or no for me, it is almost always "sometimes" and this sometimes is typically medication related. Sprycel is the reason for all of the sometimes answers such as do you have joint or muscle pain, back pain, shortness of breath, weight gain, weight loss, sleeplessness, changes in eyesight, etc, etc, you know the drill.....and it sucks, but that is the life of a person with chronic cancer; there is no good answer.

All of these answers are supposed to help the doctor determine your "health", but when these side effects are medication related, they do not present a clear picture. The only medications that I take on a regular basis are Sprycel and Levothyrozine (for thyroid, thanks to Sprycel), but my list of "as needed" is quite extensive, even though I only use these other medications when I am desperate. I am not a fan of taking drugs. Despite the fact that I have cancer, I am otherwise healthy.

Sorry for the left turn, back to the real reason I am here. Dr. Schoolfield comes in and turns his monitor to face me. He then starts showing  me my scan. I have to stop him and say, "Do I have a rind, or not?" lol He laughs and says, "No, I do not believe that you do."

CT Scan Images are fascinating!
With a sigh of relief, I am now able to focus on everything else that he has to say. He believes that I do not have a rind because when I was lying down for the CT Scan, the fluid in my pleural space was free flowing; meaning that it surrounded the lung and my lung was able to expand, to some degree. He feels that at this point, it is still able to expand, and that over time, it will.

He also believes that if I am to remain on Sprycel, that I should consider a pleuradesis to hopefully eliminate the area, in which the fluid currently collects. He explained the procedure where a sterile talc is put into the pleural space, after all of the fluid is surgically removed; this talc causes an irritation, which in turn causes scarring and adhesion of the lung, to the pleural sac, thus eliminating the possibility of fluid build up. Sounds like fun, huh?

He said that he believes there is a high probability that this would solve my pleural effusion issues, and I could remain on the drug that is currently controlling my chronic mylogenous leukemia. I did ask him what the likelihood of the effusion moving from my left lung to my right, or to the sac around my heart, and he said that "statistically" speaking he didn't believe that it would.

I also asked him the downside to the procedure and he said that there is a small chance that the adhesion's would not be perfectly consistent and that "pockets" could occur, allowing fluid to build up in those pockets, which would make it more difficult to remove, as the fluid would not be pooled, all in one area.

The one other thing to consider here, is that there may already be a lack of elasticity in my lung, which may prevent it from ever fully re-inflating again. This would not make me happy; but I would deal, and adjust.

He hopes that the fact that there was a rapid accumulation of fluid after the last thoracentesis, was possibly due to the fact that I had such a bad cough, that I was not able to be as active as I would have otherwise been, which may have prevented my lung from re-inflating like it should/could have.

All that being said, the current plan is to have an x-ray, the week before our trip, and if there is a large amount of fluid, to have a thoracentesis before I go. Lower my dose of Sprycel while I am gone, and to re-asses the situation when I get back.

I am currently leaning towards trying Bosulif before going the surgery route.

On a side note, we will be repeating the CT scan in three months to monitor the stupid nodules that appeared on my right lung; these suckers, for right now will not even enter my mind. I have already vanished them from my next scan!

Next up; leaving for Europe in two-ish weeks!

Friday, May 12, 2017

CT Scan and Update

Well, the CT Scan report is a bit interesting; it does note the pleural effusion, which we expected, with an associated atelecatesis; I am not entirely certain what this means, other than there is a partial collapse of my left lung.

It does not say specifically that there is a rind present, so I am going to assume at this point, that there is not; this would be a great news.

Of course the pulmonologist is out of town, so I cannot confirm what I am reading in the report,  but  it seems as though I can never do anything the easy way;something showed up on my right lung;

"New 13 x 20 x 16 mm part solid nodule in the right upper lobe, predominantly groundglass with approximately 5 mm solid component (series 3, images 80 and 83 and series 6, image 40). Similar part solid, predominantly groundglass nodule in the right lower lobe more inferiorly (series 3, image 109), with mild solid components along its superior aspect."

At this point, I am not going to stress too much about these nodules, as I had another one in my right lung last year, that did resolve on its' own. It was what they call a "spiculated" nodule which I believe to be more concerning than a "groundglass" nodule.

So until next week, when I see the surgeon, I will continue to pretend that all is well. This will be much easier to do now that my cough has finally ceased.

I do not know why, as I know I still have fluid in the left lung, but I am SO grateful for the reprieve!
It is funny how when you are in the middle of a cycle, whether it is coughing, nerve pain, bone pain, nausea, or whatever side effect seems to be rearing its' ugly head during a certain period of time, it becomes your "norm", you just deal with it and carry on. You don't quite remember what it was like when you weren't dealing with the side effect and you can't necessarily see the light at the end of the tunnel.

It can make you weary, and some days you just feel like crying.

And then, just when you are at the end of your rope, you often turn the corner. You think to yourself, is my coughing better? do my feet actually hurt a bit less? is my bone pain not quite as bad as it was yesterday? and you realize that you are on an upswing.

I thank God for these upswings and I have empathy for those that do not experience them as often as I do. I know this last bout with my coughing and effusions was a long haul; I coughed from December until May and was tired and disgusted, and just when I felt there was no end in sight, the coughing ceased.

I suppose that I will never really know why, but I shall not question my good fortune!
I will still be dealing with my chronic pleural effusion when I get back from our trip, but for now, I am optimistically anticipating a fabulous month in Europe, cough free!

I know that I can deal with the shortness of breath, as I am a pro in that department, so that is of little concern.

My last PCR result was .062, so we are going to lower my dose of Sprycel during our trip and see what the numbers tell us when I get back. I am just going to have to trust that all will be well.

Keeping fingers crossed for a favorable appointment with the surgeon. So stay tuned......

Friday, May 5, 2017

Visit to the Pulmonologist: Some Interesting Lung Facts

This is my second visit to Dr. Fonseca, a pulmonologist. The first was after a spiculated nodule was seen on a CT Scan over a year ago; that nodule disappeared three months down the road.

This visit is to discuss my persistent pleural effusion which is a side effect of the medication Sprycel, that I take to control my chronic mylogenous leukemia. I have recently had two thoracentesis; seven weeks apart. The first resulted in removal of 1.8 leters of fluid, and the second one removed 1.5 liters of fluid from my left lung.

The reason for this visit, is that despite just having all of that fluid removed, it is has returned returned, just one week down the road.

For the first time, I have a clearer understanding "why" this may be happening. Of course, we know that Sprycel is a main contributor, but I have been off of Sprycel for a one week period, during this time; so this is not likely the cause.

The doctor explained to me, that your lung is inside a sac, the pleural sac, and between your lung and this sac is fluid. This fluid is continually refreshing itself through valve-like mechanisms in your pleural sac; kind of like intake and outtake valves; in with the new, out with the old. This fluid acts like a lubricant between your lung and the pleural sac.

So, here is one scenario that could be the cause for pleural effusion; Sprycel messes with the actual mechanics of the valve; leaving it on the on position too long, or keeping the "out" valve from releasing the fluid.

Here is the second scenario, and more likely my personal issue. Since I have had this fluid build up, off and on during the past five years, (possibly due to the valve theory) my left lung has been scrunched up inside of the pleural sac. Because I was so adept at adapting, I never realized how scrunched up, and for what length of time,  my lung was actually scrunched up there.

It is possible that during the time it was/is all scrunched up, that a fibrous coating of material has
formed on my lower lung, preventing it from fully inflating, even when the fluid is removed. My understanding is that something, must always fill that pleural space, and if the lung does not drop back into that space by re-inflating, when the fluid is removed, then the fluid will build back up, in order to fill the space.

You follow me so far?

Of course, the next question is, what do they do if this is the case? The answer, unfortunately does not sound fun; the doctor refers to this fibrous material as a "rind" and in order to "fix" the problem, surgery is required to "peel" the "rind" from the bottom of the lung; thus allowing it to fully re-inflate.
The doctor and I also discussed the possibility of have a pleuradesis performed "if" I have to have surgery to remove the peel. This is a procedure that would be done at the same time and involves irritating the outside of the lung either manually, by "scratching" the surface, or by putting in a talc to cause irritation.

The goal of this procedure is to cause the lung to form scar tissue and adhere to the pleural sac, thus eliminating the void where the fluid collects.

My questions are that if the fluid cannot go into the left pleural space, will it them collect in the right pleural space, or the sac around my heart; the pulmonologist said, "Not necessarily." However, this is something I will discuss with my oncologist, as it does concern me.

He said that I should seriously consider this as a viable option, as we know that Sprycel does work in controlling my CML, while allowing me a decent quality of life, with the exception of the pleural effusion; if the procedure was successful, I could carry on with Sprycel, without skipping a beat, if this side effect could be resolved through this surgery.

All food for thought. Fear of the unknown and elimination of something that I know works in controlling my CML, all play into my thought process. The "What ifs?" will be coming out in full force and there is much to consider.

None of this will be resolved prior to my trip, but I hope to have a clear picture of what I am going to be facing when I return.

Now, I am off for a CT Scan, with a referral to a pulmonary surgeon.

And the beat goes on!

Wednesday, May 3, 2017

Two Thoracentesis and MORE Fluid!

A few days after the latest thoracentesis, with 1.5 liters of fluid removed, I am still coughing like a mad-woman. It is exhausting and it is the weekend. So what do I do?

I decide that maybe I should start taking a more proactive approach to this cough, and start using my Advair and Allbuterol every twelve and four hours respectively, and see if I cannot knock this cough to the curb; I even tried Mucinex; all to no avail.

And if the cough is not aggravating enough, it seems as though luck has decided to aid in the development of thrush in my mouth, too. Of course, being that  Advair is  a corticosteriod, and a side effect of using it frequently, is a fungal infection in your mouth, I have no doubt that this is likely the cause. I tried to offset this side effect by rinsing my mouth after use, eating yogurt and taking a pro-biotic, but it did not work.

But get this! I have another crazy theory. The thrush did not appear on my tongue, until my husband started making a sour dough starter on the hearth of our fireplace, which would logically put more yeast into the air, right?  And with more yeast in the air, would it make any sense that that would contribute to the yeast infection on my tongue? We talked about it and realized that I have been using Advair, on and off during the past six years and that this is the very first time I ever developed thrush, in my mouth. All interesting nuggets of information.

Soooo, he threw the starter away and within two days, my mouth was halfway healed; co-incidence?? I don't know, but definitely interesting., and worth mentioning.

At any rate, Monday rolled around, and  since I was still coughing and had a half-crappy tongue,  I talked to my most awesome doctor, here in Boise, and she prescribed Nystatin, for my tongue,  and a chest x-ray, "just for fun", for my cough.  I have had a sneaky suspicion that there is more fluid in my pleural sac,  as my cough has gotten worse, and I have been short of breath going up stairs, despite the latest throracentesis.

Since it has been less than a week since my last thoracentesis, and I have been on a Sprycel break, I am not a happy camper! What the @#$% is going on now?? It just doesn't make any sense that I should have MORE fluid!

At any rate, we head to town, pick up the prescription, and go to the Imaging Center, for ANOTHER x-ray ; after the gal takes the x-ray, I take a look, and what my untrained eye tells me is that I have a fairly large pleural effusion in my left pleural sac; AGAIN!

After talking to my doctor, she confirms my suspicions and recommends that I see the pulmonologist to get his take on the situation. The fact that the fluid just keeps returning, despite being off of Sprycel, and having it removed, is not only frustrating, but concerning as well. Getting to the bottom of this, before we leave for Europe, is essential.

Fortunately for me, the pulmonologist has an opening in two days.....so the saga continues!

Maybe my next update will hold the Golden Key, and I will have some answers soon.

Saturday, April 29, 2017

A Slap of Reality

Today, reality decided to take a nice wet towel, and slap me upside my face! For those of you that follow me, and/or my blog, I am sure that you have noticed my lack of updates during this past year.

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??

As the old adage goes, "All good things must come to an end" or so they say, and I am back in the throes of battling chronic mylogenous leukemia.

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.

I am faced with some really grown up decisions and choices, and none of them are going to be easy. No matter what I choose, there is risk involved; there is fear of the unknown, and the reality that what I choose may, or may not work.

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 have once again been reminded to cherish each and every moment, love a little harder, live a little better, and laugh a whole lot more!

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!

You know how when something isn't working quite the way you hoped, you just keep hoping that things will get better? And how that hopes turns into a force that almost has you convinced that things are actually, maybe getting better? Even though they are not.

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.

So, off to the Imaging Center I go; I am so blessed to live in a place where I can just drive a mile or so down the road, walk in, and have an x-ray taken, all within twenty minutes. Not only is it taken, but the person taking the x-ray always lets me gander at it, which I sincerely appreciate. I HATE waiting for results!

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.

I told him that I did not believe that there could be nearly as much fluid as last time, and we both made a guess on how much fluid would be removed; I said 1 liter, he said 1.5 liters. Once we hit 1 liter, I knew I had lost that bet and that I was inching closer to that "danger" zone. The cough started around 1.2 liters, so we slowed the flow, and at 1.3 liters we stopped it and took a short break.

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!
It took several days for the pain to subside after my last thoracentesis; it wasn't local pain where they inserted the needle, it was a pain that mostly happened when I took a deep breath; I was still coughing and quite annoyed.

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??

While I am grateful that I have SOMETHING to occupy my mind, I am so sick and tired of sitting around. The weather is starting to get better and I have so many things that I want to do. I have missed three dances, and cannot even keep my floors clean. I feel like a total, depressed SLUG and I am sick and tired of being sick and tired!

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??

Sign me up! Doesn't that sound fun? Not to mention, I am sure there will be an adjustment period to a new medication; I really felt horrible the first year or two that I was on Sprycel, and when I have to make the switch, I want to be at home.

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!
After being gone for several months, we have finally returned home; it is the end of February and there is still snow everywhere! Maybe we came home, too soon?

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!!

And believe you me, it let me know. The pain continued for several days, mostly when I took a deep breath, and my cough did not go away, like it did last time.

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!!
I guess my end of year health tests would not be complete without a CT scan. For some strange reason, my CA 125 will just not get into the normal range, and since I have a history of borderline serous ovarian tumors, my gynecological oncologist feels that a CT scan is in order; due to my continuing headaches, he is going to scan my brain, too.

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.

Trying to schedule a CT scan at the last minute is not always easy, fortunately I have been going to the same imaging center for over fifteen years, and they know my circumstance, and work really hard to accommodate me.

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.

While we were sitting in our booth, just finishing up our brunch, the owner of the cafe asked us if we would like to have some rice pudding, he said "no charge" my dad just made up a batch in the back, and I would like to give you some. What he did not know was how crappy I was feeling, and how much I missed my mother, and that whenever I felt crappy, my mother ALWAYS made me a big bowl of rice pudding!

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 swear it felt like my mother had sent me this bowl of rice pudding, just to let me know that she is always with me. Rice pudding is not on the menu at Bit O, and never before, in all of the times that we have been there, have we been offered rice pudding!

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!

The end of the year typically ends with us spending a great deal of time away from Boise; our families still live in southern California and Arizona, so we like to spend the holidays with them.
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.

So, at the request of my oncologist I was going to do a retest with the lab from OHSU. This involves having a "PCR kit" mailed to me,  (which is more like somewhere, to someone who will be home) and then finding a lab that is willing to draw the blood, per the instructions and then mailing it back to UHSU; this kit must be kept refrigerated and can only be drawn on certain days, which makes this even more difficult as we were often a few hundred miles in one direction or another.

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 quizzically looked at me and asked if I had an appointment! lol I said, "Well, No, not exactly, here is my dilemma." She took the kit, examined it and said "Yes, I can draw this." I was ecstatic and started to take my jacket off when we both realized the blood cannot be drawn on a Thursday! lol

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 .0%

Monday, March 13, 2017

Are There Angels Among Us?

It was not that long ago, early in the evening, when our telephone rang. I know that this may not seem strange to you, but you must understand, that where we live, there is no cell service; which means that other than solicitors, we rarely get calls. (I am sure you are aware that a cell phone is incompatible with a land line, right? I mean you cannot text, so what would be the point? lol)

So, as the phone continues to ring, I debate whether or not to answer. Eventually, I succumb and  pick up the receiver;  warily saying "Hello?"

On the other end of the phone I hear an introduction, "Hi, my name is Kelly and I am calling on behalf of the Leukemia, Lymphoma Society and wonder if I could have a few moments of your time." This, of course, allows me to put down my guard and to actually listen to what Kelly has to say.

The reason for her call was to ask my opinion on ways that our Boise Chapter of the LLS, could improve on our local Light the Night Walk. After speaking with her for awhile, I realized that I had met Kelly, last year on our walk. It was Kelly's first walk and her father has just passed from Acute Myloid Leukemia. I remember her being totally overwhelmed and emotional, and I remember feeling so sad to have met someone, who so recently had lost someone they loved, to blood cancer.

And I remember being so impressed that she was there! Light the Night is an uplifting fundraiser for blood cancers, but it is also a very sobering experience; while there are always success stories, there are also many losses.

At any rate, as we continued to chat, the subject wound its' way around to the wonderful LLS staff that we have here, in Boise, and all of the work that they have done in getting Survivor/Fighter shirts made for those of us still in treatment, fighting our disease. She then mentioned that she had just read something online about that and I told her that it was possible that what she had read, was on my blog.

There was silence on the other end of the phone, and then she said "Wait! What is the name of your blog?" I told her and she said "Oh, my God! I have been looking for you!"

Apparently she had been reading my blog, and it had been some comfort to her; it seems as though our chance meeting was meant to be. We excitedly exchanged personal information and quickly became social media friends! lol

Which leads me to the next part of this story.

Kelly is currently fulfilling a promise that she made to her father; she is working in a hospital and volunteering and raising money for the LLS. She vows to pick up the fight against cancer, where her father left off, and to fight in his honor.

These are her words:

Two days before my dad lost his courageous battle; I looked straight into his sunken eyes and with wobbling cheeks, vowed that I would now take over.
“Daddy, you’ve fought so hard. You can now let go of your ugly pain and run into the arms of your angels. I promise that I will continue to fight this battle, in your honor; until my last breath has been taken.”

Kelly has kept her promise to her father and is continuing to work in the very place she took her Dad for treatments, and she continues to volunteer her time to the LLS.

Now! 

For the truly remarkable part of this story, I want to share with you an absolutely amazing, and very touching story that Kellly experienced and shared on her social media outlet page.
These are her words and her experience and I asked permission to share them with the world; I pray that you are as inspirited, encouraged and fascinated as I am.

Enjoy:

"Please bear with me even though I need to wipe tears from my eyes and gunk from my nose as I tell you a tale, which even I cannot comprehend.

It was a usual day at work, with wheelchairs zooming by, patients sitting in the lobby awaiting procedures, Linda's loud, humorous laughter; roaring from afar, fire alarms going off, doctors rushing by in their white collared coats and many hearts of strangers. 

The end of the day had approached when a man arrived at my desk inquiring about where he could pay his bill. 

"Sure, I can show you. Follow me this way," I advised him.

We walked the short distance to see Jennie; however, when we arrived I noticed she was already speaking with another patient.

"Well it appears she is assisting another patient at the moment. If you'd like, feel free to have a seat on her couch and I'll let her know you're waiting," I kindly told him.

I walked back to my desk and sent Jennie an instant message informing her someone was waiting in her lobby. I then began focusing on an overdue work assignment. About 45 minutes passed and the lobby was dead, when I heard someone interject with ahem. I unglued my eyes from the computer screen to see the gentleman whom I had helped earlier.

He leaned in toward me inconspicuously and what happened next; I suppose you will need to be the judge of that.

"I want you to know that you are a beautiful person, with a beautiful smile and a beautiful soul. This is for you," he spoke, as he handed me a beautiful necklace."

He then said something which nearly shocked me to death.

"Your father is proud of you,” he muttered.

My eyes welled up as I struggled to thank him while choking over my tears. A meltdown had begun to emerge. He turned and slowly began to walk away.

I attempted to hide my face in the process of hurrying to the back to 'lose it', but stopped for a couple of seconds to turn to take one final glance at him, but he had vanished.

Where could he have gone in a matter of a few seconds, as he was heading in the same direction that he had originally entered through, which is a bit of a walk?

I am uncertain at this point for a probable cause, but I will add that through this experience, I have finally discovered my thesis for my final exam essay, "Might divine intervention truly exist?"

I am sure that you will agree that this is a sign that Kelly is not only honoring her father, but she is honoring each and every one of us that is either fighting our battle with cancer, or know someone that is fighting or has lost their battle to this disease.

Thank you Kelly for sharing your time, your heart and your story. The gentlman in your story is correct, "Your father is proud of you.”  And I am proud to call you "friend."

Thank you, Kelly; you are our Angel!

Thursday, February 9, 2017

Six Year Cancer-versary!

Today marks six years since I heard the words, "Michele, I do not know how to tell you this; but you have leukemia." Needless to say, I was shocked beyond belief and scared, almost to death!

I admit that it has been a roller coaster of a ride, with many ups and downs, but I am happy to report, that I am still here; enjoying life, family and friends.

Looking back on my journey I realize how far I have come, and am so grateful for the medical advances that have kept me alive.

I find it ironic that I am in Palm Springs, as I now live in Boise, Idaho, on the day, in the same town that I was diagnosed. It is bittersweet. Joe and I are staying at the same resort that we came to, on Valentine's Day, when I was released from the hospital.

As far as, how I am "doing" now, I can tell you that last year was my very best year since diagnosis. All of my PCR's were below the magical .0 number and my side effects were minimal. I still deal with the typical nerve and bone pain, fatigue, headaches and nausea, but they were more of a nuisance this year, than debilitating.

I also still deal with pleural effusion from the Sprycel, but have found that a thorocentesis does wonders!

So how did I spend my day? Having a head CT. As far as I know, I have no rocks, or holes in my head! It was precautionary due to the headaches I have; likely a side effect from my medication.
Living life with cancer is definitely an inconvenience; we spend much of our "vacation" time traveling to see my oncologist, having blood drawn and scans taken, but I just accept that this is part of the deal, in keeping me alive.

There is a small amount of stress, every three months, waiting for test results, but that is a small price to pay for the privilege of being around to enjoy my life.

Tonight I will spend with my youngest son and tomorrow morning we will travel to see my middle son, and his family. The joy that my grandchildren bring to my heart is like no other and I feel blessed to still be alive!

This year, with any luck, will be filled with travel to places I have never been, so if you are just beginning this journey of living with CML, try not to despair. Take each day, one day at a time and keep putting one foot in front of the other.

Reach out to others for support and be kind to yourself; accept your new normal and learn to roll with the punches.

And remember, that someday, there may actually be a cure for chronic mylogenous leukemia! I intend to be here when it happens!

Bricks for the Brave!!