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Saturday, February 24, 2018

The Joys of Having Surgery with CML!

Getting ready
First things first! I apologize for my disappearance and I thank all of you that have messaged me privately, to make sure I was alright, and had not fallen off this side of the earth!

As per my last post, I was scheduled to have rotator cuff surgery on Oct. 27, 2017. I had no idea what I was in store for, and had no idea, just how out of commission, I would be!

As with all surgeries, you must pass a pre-op exam, to be cleared for surgery. Mine went something like this...."While otherwise healthy, you do have cancer. You are at risk for bleeding, and you have a significant pleural effusion, of your left lung."

I quickly explained that I would be ceasing to take my leukemia medication (Sprycel) prior to, and a few days after the surgery, to deal with the minimal risk of bleeding, and that I had had a thoracentesis a week prior, with 1.7 liters removed. I explained that I had spoken to my oncologist, and the pulmonologist, and they had both given me a green light.

UGH!! This SUCKS!
The surgery "Poo-Bah" said while all of that is fine and dandy, he wanted me to have ANOTHER thoracentesis the day before surgery.......boo-hiss! He said that if I did that, with the other precautions in place, he would clear me for the surgery.

Sooooo, I bit the bullet, and had another thoracentesis,which removed another, 1.3 liters of fluid, which shows the seriousness of the recurring fluid; I showed up the next morning with my fingers crossed; for surgery.

Of course I had already spoken to my surgeon, in depth, about the surgery and the risks, all surrounding my left lung, so he was pleased that I had had the second thoracentesis. There was concern that the nerve block might cause some respiratory distress; this coupled with anesthesia and pain meds, it was determined that the typical outpatient surgery, would be an inpatient surgery, for me. We figured on a one night stay.......HA!

The competence and concern of the surgical staff, the anesthesiologist, the surgeon and his assistant, were top notch! I felt that I was in very good, caring hands. After speaking to the anesthesiologist, and having another chest x-ray, (yes, there was still fluid) we decided to do a moderate block, hoping to help get me through the most painful hours, following surgery.

I have to tell you, that the block was the weirdest feeling sensation I have ever felt! I watched as he located the nerves by ultrasound, and then injected the medication, this, was facinating, to me; then as my hand and arm began to lose sensation, I marveled at how quickly my arm became completely paralyzed. No matter how hard I tried to use my brain to move my arm, it would not budge, it felt as though it weighed a literal ton. I have such empathy for those who are truly paralyzed, and cannot even begin to grasp how frustrating, and infuriating this must be.

What a disturbing eye opener.

The surgeon came in and said that he was optimistic that the surgery would be successful, and then we were on our way!

As with all surgeries, I suppose, it seemed to be over in a flash; I woke up in my sling, which fortunately I had adapted with a wool-like, soft fabric, to protect my sensitive skin.

I was told that everything went really well, and that now I had to face the most difficult part; healing and regaining use of my arm.

I was medicated for nausea and sent to my room. The most difficult part of post-op, was getting comfortable. The block wore off in the middle of the night and the pain began! NO FUN! Every single nurse that came in, told me that shoulders are the absolute worst orthopedic surgeries; which is the reason that I did not allow myself to research the surgery, prior to having it, as I don't think that I would have gone through with it! They cared for me with great empathy, and did their best to keep me comfortable.

I quickly realized that my hope of not having to take anything stronger than Tylenol, was not a reality, so I took the Hydrocodone that they offered, which caused me to itch, and become nauseous, which was no surprise; but did help with the pain. I took Zofran, and Benydral,to help with the itching and nausea, and lots and lots of ice!

I survived the night, but quickly questioned my choice to have this surgery in the first place; I was miserable, in pain and wondered how I was going to survive! I told myseslf I was being a big baby, but I am telling you, this surgery SUCKS! Not only is it difficult to do anything, the pain is quite severe. Protect your shoulders at all costs; you do NOT want to have to got through this!

Heart Light!
The surgeon came in after the surgery, and again in the morning,and said that it went really, really well;  that helped to deal with the pain; having hope for a strong shoulder without constant and continual pain, in my every day life. I just had to "get there"!

I awoke, thinking that I was going to be going home, and I was quite surprised when they told me that I was going to be staying another night; apparently my oxygen saturation was too low, to even consider letting me go home; but truth be told, I couldn't even begin to imagine the trek home, so I was grateful to just stay put.

 I settled in for another night of misery, and noticed that the compression bandage that was on my shoulder, was begining to irritate my skin. I started to lift it, around the edges, away from my skin, and tried to get myself as comfortable as possible. My oxygen monitor kept going off until they insisted that I stay on oxygen continually; which meant yet another, miserable night in the hospital. Between the pain, and the itching that was beginning to happen on the backside of my shoulder, I really questioned my decision, once again, to have this surgery, and I just wanted to cry.

The surgeon came in bright and early in the morning, and I told him about the itching that was starting to occur under the compression bandage; he immediately removed it and said it was a bit red, but glad I told him, so it could be removed before any more irritation could occur.

He told me to keep on keeping on, and that things should start to get better over the next few days.
At some point, I remembered that my "personal" doctor was on call for the weekend, which I knew was a great thing. She came in, checked me out, and got busy discharging me! Because of my low oxygen levels, I had to go home on oxygen, but she had that set up in no time. Thank God for small favors.

The ride home was no fun at all, and since we live on a dirt road, the last few miles were the worst; but to my surprise,  waiting in our driveway was Norco; the oxygen people! I swear, every single place should be as on top of things, as the medical community is here, in Boise.

It didn't take long to get the oxygen and ice machines, up and running, and for me to settle in and try to figure out a way to be relatively comfortable, for the next six to seven weeks; this was going to be an easy task, but I was up for the challenge!

THIS is why I disappeared, and neglected my blog, and all of my other online, social connections!
I am sorry, but I promise to get all caught up, ASAP!

It seems, that having surgery, while living with cancer, really is a bit more complicated!

Wednesday, October 25, 2017

PCR Results, Thoracentesis and an MRI

It has been a busy few months including a trip down south to visit kids and grand-kids, and dear friends and family. Prior to my trip I had a thoracentesis followed by a CT scan which indicated that my lung is currently not trapped; which is a good thing.
Belated Birthday Lunch!

Early Birthday Lunch!

The fact that the pleural effusion in the left lung, just will not "go away" and "stay away" I will most likely be giving Bosulif a go, real soon; it is so hard to abandon something that is working so well to control my leukemia, with minimal side effects, for the unknown.
So that is the update on THAT!

Next up is my right shoulder; my rotator cuff was injured two plus years ago, by a dancer. Last year I tried physical therapy and this year, while lugging my suitcase down a cobbled street in Paris, I believe that I "injured" my bicep, yanking my suitcase out of a cobbled pothole.  I heard the "pop", but it seemed fine the next day, and throughout the rest of the trip.

Once home, my right arm started to give me fits of pain and continually kept me up all night aching; I finally relented and had an MRI. What a strange machine; so hard to believe that all of that noise can create such amazing images. Thankfully ear plugs and headphones with music, made the time pass quickly.

The results, as expected, were not good and after seeing an orthopedic surgeon, surgery is scheduled for Oct. 27th. Due to my persistent pleural effusion, and the leukemia, I will be forgoing the typical "nerve block" and spending the night in the hospital, just so they can control the pain, and keep an eye on my vitals.

I do not know how they will control the pain, as I am not good with medications, and since Hydrocodone/Vicodin, seems to be the drug of choice, and I cannot stand it (it keeps me awake for hours, does nothing for the pain and is agitating to me), I am hoping that the ice machine will not only keep the swelling down, but will also help with the pain.

Needless to say, I am dreading this surgery; and while I have high hopes that it will be successful, I also have a fear that it will not. I truly believe that my muscles and tendons have been compromised by two rounds of the antibiotic Cipro, taken many years ago, which may interfere with the success of the surgery.

Of course we cannot know this until my surgeon actually opens up my shoulder and takes a look inside. I will remain hopeful and optimistic and pray that it is better, than it is now. I would really LOVE to have full range of motion and use of my right arm again!

So, next on the agenda is getting through pre-op, and trying to figure out how to live as a one armed bandit. I did ask about using my hand and wrist to knit, and/or crochet, and I believe that it will be a good way to keep the circulation flowing and the wrist from locking up, not to mention a way to keep my sanity!

Wish me LUCK!

PS: My PCR results came back at .06%!!!! Holding strong on another medication reduction!

Sunday, October 15, 2017

Light the Night 2017 Sadness

As excited as I was to have surpassed my Light the Night goal, to help fund cures for blood cancers, I found myself a bit sadder this year, than in years past. I am sure that one of the reasons I was feeling "blue" was due to the fact that I had just returned from an eleven day trip visiting kids, grand-kids, family and friends, along with a visit to my oncologist.These trips are always wearing, even though I enjoy them immensely.


That coupled with the fact that my grandest "pooh-bah", Alisha, was no longer heading up the Boise chapter of the Leukemia & Lymphoma Society. I understand why she is no longer there, and the gals in the office are still awesome, but she is still sorely missed!

Alisha was one to "fight" for patients like me, that are surviving, yet still in treatment; we are Fighters! We do not quite fit into the "Survivor" category, and she understood this, so for the past three years, she made certain that those of us still fighting the good fight, had Survivor/Fighter shirts for the walk. It looks like now if I want to "fight" for these shirts, I will have to take up the fight nationally, without my greatest cheerleader!

As we were walking around the park, checking out the event, I noticed a few changes, and was told that from now on, everything must be the same at every walk, per "National Standards"; hence the short sleeve t-shirts, despite the fact that we are in Boise in Oct.! Brrrrrrr...... And no "Reflections of Life" wall.

They had a new blow up "In Memory" igloo, where I met a sweet young lady named Abby; she was a volunteer, and her father is battling colon cancer. She asked me when I finished my treatment and what type of blood cancer I had; and there it was......on my shirt it said I was a Survivor.


I had to go into the song and dance of, "Well, I am actually still in treatment, and will be for the rest of my life, or until a cure is someday, hopefully found." I told her that in the past we had "Fighter" shirts and she wholeheartedly agreed that there should be a separate category for those of us, still in treatment. She said her Dad is fighting hard every single day, and they are all looking forward to the day which he completes his treatment and is cancer free; that is when they will consider him a "Survivor!"

I find it interesting that this sweet, young girl understands this concept better than the organization that actually hosts this walk, and I pray for her and her family, and especially her father to beat his cancer and to become a true Survivor!

As we were talking, just inside the "Memory Igloo," I found that I just could not write down all of the names, of all of the dear people we have lost, to CML. Every year my list gets longer and longer, and this year, I think partially because I was just so exhausted, I simply couldn't do it. It just made me too sad, and the list has  become too long; sometimes things are just too overwhelming, so I allowed myself this get out of jail free card, and accepted the fact that I was drawn to this igloo, so that Abby and I could meet, and give each other strength; for this I am grateful.


After leaving the tent, I continued to become more aggravated because I was walking around with a shirt that implied I was a "Survivor," just like all of the people who have lost their battles with CML would have been considered. Fact of the matter is that they were all "fighters" fighting every day, still in treatment, yet lost their battle to CML.

Yes, they survived living with CML, for a period of time, until they could no longer fight; they were "Fighters" in every sense of the word, from the first moment that they were diagnosed with chronic mylogenous leukemia, till the very end.

While I wholeheartedly believe in the power of the Light the Night event,  I do wish that they would recognize the awkward position which they put the patients that are still fighting their battle with a blood cancer, in. They do not understand how disheartening it is, to have so many people congratulating you on "beating" your disease, when in reality, you are still fighting for your life. This is not limited to those of us that live with a chronic blood cancer, but to each and every person that is in the throes of treatment, fighting every single day.

You can see the differences, in the eyes of people who have completed their treatment and are "cured' and those that are still fighting.


I am not certain that I have the energy to fight this fight alone, to get the LLS to start recognizing all of the patients that are still in treatment  for their blood cancer, as a separate category, as a "Fighter" category, but with the help of others, we may be able to get them to actually recognize the specific people, which they are fighting so hard, to help.

What do you think?

Bricks for the Brave!!