Tuesday, February 27, 2018

Now the Real Fun Begins; Helpful Tips!

While it was really great to be home, things were not much easier. Between the ice machine and the oxygen machine, there were cords everywhere, and just going to the bathroom became a real ordeal, as was bedtime; Joe had to move everything from downstairs, to upstairs and back down again, everyday.

My most difficult chore was managing the pain, and my medications. I was not a fan of the Oxycodone, so I quickly switched to Tylenol during the day, and the Oxy, only at night.

Trying to get comfortable was nearly impossible; whether it was day, or night. All day I waited for night, and all night, I waited for day, hoping for some relief. I can honestly say that the nerve pain in my elbow, from being in the sling, and the pain from the skin rash/irritation, from the surgical compression tape, were worse than the pain in my shoulder. Weird, huh?

The first week at home, was barely tolerable, and I questioned my decision to have this surgery, over and over and over again. I was allowed to remove the sling for showers, and encouraged to take my arm out of the sling, a few times a day, to gently raise and lower my arm, to keep my elbow from locking up.

Coming  out of the sling, and the desired position for healing, which is raised, out in front of you, at 90 degrees, is extremely scary and painful. Doing this made me feel like throwing up!

I did a lot of sitting in a recliner, with a pillow supporting the sling, and my arm; this allowed me to take the neck strap off, and remove my lower arm from the sling, so that I could move my elbow. This helped a bit with the nerve pain, but what I didn't know, was that this was going to be an issue for months to come.

I was surprised at how painful, yet itchy, the skin irritation was, and I tried everything from some home remedy, to cortaid to benadryl gel; which seemed to be the most helpful, as it was cooling, too. This pain lasted several weeks, and I can honestly say, that if it were not for that, the recovery period would have been much easier, which is annoying, because that could have been avoided; guess I will know better, if there is ever a next time.

Funny thing is, they gave me some sort of antibacterial soap that I was suppose to use, at home, prior to surgery. I was supposed to use it twice, leaving it on my body for several minutes to kill any germs. While I can appreciate their desire to have a bacteria free body, in which to operate on, after reading the precautions and side effects from that "soap", I called and said, "Nope, not doing it!" They said that was alright, to just use my regular soap, and not take any chances, since I have such sensitive skin.

So what happens? I am apparently allergic to the adhesive on the compression bandage. I can only imagine what would have happened if I had used that soap, all over my body, and then had a reaction. Can you even imagine using something that could potentially cause your entire body to develop a rash, or blisters: If that had happened, I would have jumped in front of a train. lol

Oh the joys of being me! One thing I have learned, the hard way, is to ALWAYS read medication inserts, and take their warnings seriously. Outweigh the risks vs the rewards, and make an educated decision, whether it is an antibiotic, a soap, a pain medication, itching or nauseas pill; it doesn't matter the type of medication; do your homework!

Tips for those having Rotator Cuff Surgery

Prior to surgery, I thought that I would have plenty of time to catch up on my blog, read, and even crochet; all good thoughts, but not realistic. I was so miserable that I could barley even watch television; I couldn't focus on anything. Be prepared for that possibility, if you are having surgery; make sure that you have foods that are easy to swallow, for me, that is rice pudding, drinks that you enjoy, in addition to plenty of water, for me that is ginger-ale, and things like back scratchers, chap-stick, hand lotions  and a perfectly good stash of chocolate, all close at hand!

My K-cups made it so I could actually make my own cup of coffee or tea, and my RTIC Tumbler kept things cold for long periods of time, with no condensation. I kept all of my medications and bandages together and within easy reach. Anything that you can do, prior to surgery, to help make life easier post surgery, is a good idea. Things like getting a haircut, washing your sheets, cleaning your house, having clean pajamas and clothes available which are easy to take on and off  are all recommended. Frozen bags of soups and spaghetti are also a blessing!

Ice Machine; Get ONE!

Also, depending upon the type of ice machine that you have, freezing water bottles, three times as many as will fit in the machine, will help to keep your water very cold, at all times, with much less mess, and fuss. Make sure you take the labels off, and check the filter on a regular basis, to ensure the water moves freely.This was a lifesaver!

Clothing & Sling
Select clothing that is loose and comfortable, and easy to put on and take off. I had prepared for this in advance, and had several very soft tops and pajamas to help protect my skin from the straps on the sling, and elastic waisted bottoms. As previously mentioned, I also fitted soft, wool-like material over the neck strap and waist strap to help to protect my skin. This was a lifesaver.

To remove your sling, sit in a chair, and prop it up on a pillow, on your lap; take off the neck strap, then the waist strap, and then open the arm straps; it is helpful to have someone aid you  in sliding your arm free, in the beginning; as time goes on, you should be able to do this yourself. Be careful to keep your arm supported at all times.

To put your arm back in the sling, do the reverse.


Do a few trials runs prior to surgery; to actually put on your top, you will need to be able to put your affected arm into the sleeve, and then lift the neck opening up over your head, and then put your other arm into the other sleeve. This can be accomplished with your "bad" arm hanging down, by your side; you will not be able to raise it, and should not use your shoulder muscles, at all.  Pulling up bottoms, well, good luck! This is no fun. lol

With practice, and the correct clothing, it does become easier.

Shower and/or Bath

Allow yourself plenty of time! It takes quite awhile, to just get undressed. Make sure you have everything you need in the shower, before stepping in. I recommend having a chair, with a towel draped on it, placed right by the shower, so that you can sit down, immediately upon exiting the shower.

Supporting the arm during the first few showers is a real challenge. Having a seat, or bench in the shower, in my opinion, is essential. My plan was to get in, and sit down! We actually placed a large, foam roller, in a trash bag, to take into the shower, to support my arm, while I enjoyed the warm water. Soaping up, and washing my hair was a fiasco, and if you are lucky enough to have someone join you, in the shower, don't be shy! lol The first few showers are tough! It is not easy to clean all you Parts" with one arm; especially your hair! lol

As far as a bath goes, I found that getting in and out, one armed, was not easy, but once there, it was bliss! Allowing my arm to float freely in the water felt amazing, and it was so much easier than trying to keep it supported in the shower.

Good LUCK!


From what I understand, many people sleep in recliners, during the beginning of their recovery. For me, my bed is my sanctuary, and I wanted to be in it!

The way I slept, was propped up; with feather pillows behind me, as well as formed underneath my elbow area, and my arm, which rested on my abdomen; trust me when I say that your ribs get really sore, throughout this whole ordeal!

Once "settled", and fully supported, I was able to remove the neck strap. I had the ice machine going, and in my case the oxygen, too. I took a pain pill, along with Benadryl, and Zofran; and prayed for sleep!

Sleep usually came, for a few hours, but eventually I began to suffer with a "dry mouth"; for anyone who has experienced that, you will understand what I am talking about. It is the weirdest thing; your mouth, tongue and gums become bone dry; not sticky dry, but paper dry, a very strange sensation. Keeping water readily available did not do the trick, but Biotene seemed to temporarily help. Just another side effect of medication, and something to keep you awake, at night.

I also kept a small flashlight within my reach, so that when I inevitably had to go to the bathroom, I could see what I was doing and where I was going; getting in and out of bed was NOT easy, as I had to get all unhooked, and then hooked back up to everything; sling, oxygen, pillows, covers and ice. What you will learn, is that you will become much more dependent on your abdomen muscles and your legs. Since it is nearly impossible to pull the covers OVER your sling, I also kept a snuggly blank, nearby, to put over my chest area. Ear plugs also are a great help, as the ice machine is likely to cause "gurgles" throughout the night.

I think that I have covered enough material for one blog! I am sure that other helpful tips will come to me, as I continue to update this journey.

While I pray that none of you will have to endure this surgery, I hope that if you do, this information will be of some help. I am sure it would be helpful for other types of surgery, as well.

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.

The surgery "Poo-Bah" said while all of that is fine and dandy, he wanted me to have ANOTHER thoracentesis the day before! 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!

Bricks for the Brave!!