Yet Another Setback
Here's another entry for my dictionary of medical horrors: rhabdomyolysis: Muscles are a tasty snack!
It all started last weekend, when we were preparing to leave Los Angeles. I was so sick and so terribly nauseous that I not only stopped trying to eat, but also seriously slowed my fluid intake. On Sunday, the day we flew home, I threw up over and over in the hotel room before we left for the airport. To avoid throwing up on the flights, the only thing I drank all day was a small glass of apple juice on the first flight. The minute we got settled into the van at the Knoxville airport, I threw up in a plastic bag that we keep in the door pocket for that very purpose.
The nausea and vomiting continued, relentless. I always have some muscle pain and general weakness after the Yondelis treatments, which I have always attributed to the Neulasta shot. It was so painful that I skipped the shot this time, opting to have my blood counts closely monitored for any drop. So I was a little surprised that I was experiencing worse pain and weakness than when I did have the shot.
By Tuesday evening, the pain in both arms was excruciating. I took a couple of Advil and cried myself to sleep. By Wednesday, my arms were so weak that I couldn't lift a glass without assistance. I began to contemplate the possibility that this was more than just my regular post-chemo agonies. During that night, I woke up several times moaning or crying from the pain. On Thursday morning, I told Don that I was going to have to go to the hospital because this amount of difficulty was obviously not within normal limits.
Blood tests at the hospital revealed that my CK (creatine kinase) level was more than 600. That's 3 times the normal amount. The doctor diagnosed a mild case of rhabdomyolysis, also known as "muscle wasting". It happens when the muscle fibers begin to break down and myoglobin is released into the bloodstream. It is extremely harmful to the kidneys, and can even cause kidney failure in extreme cases (thankfully, mine was very, very mild).
The treatment for rhabdomyolysis is mass quantities of i.v. and oral fluids. I stayed at the hospital for six hours and received i.v. fluids, then the CK test was repeated and my level was beginning to drop. I came home and began a regimen of LOTS of fluids here at home. I will have the blood test repeated on Monday.
Due to the intense pain and weakness in my arms, I have been helpless and truly miserable. Even though I can finally lift a glass again, if it's not too heavy, I have a hard time doing many ordinary tasks. I can't roll myself in the wheelchair or buckle my own seatbelt or lift my laptop. I can't sew, can barely type, and just the simple process of getting dressed today made me hurt so much that I had to take Advil. It really makes me think about how much I have taken my arms for granted. My legs have failed me again and again, but I could always depend on my arms. Now, I wonder how long it will take to rebuild the lost muscle fibers and regain full strength of my arms. It's a sobering prospect.
How many ways can my body betray me?
:-) Sharon
P.S. - For those of you who haven't heard: Yes, the wheelchair came back! The airline found it and delivered it to our hotel at 3:30 in the morning on Thursday. I was really happy to see it!
It all started last weekend, when we were preparing to leave Los Angeles. I was so sick and so terribly nauseous that I not only stopped trying to eat, but also seriously slowed my fluid intake. On Sunday, the day we flew home, I threw up over and over in the hotel room before we left for the airport. To avoid throwing up on the flights, the only thing I drank all day was a small glass of apple juice on the first flight. The minute we got settled into the van at the Knoxville airport, I threw up in a plastic bag that we keep in the door pocket for that very purpose.
The nausea and vomiting continued, relentless. I always have some muscle pain and general weakness after the Yondelis treatments, which I have always attributed to the Neulasta shot. It was so painful that I skipped the shot this time, opting to have my blood counts closely monitored for any drop. So I was a little surprised that I was experiencing worse pain and weakness than when I did have the shot.
By Tuesday evening, the pain in both arms was excruciating. I took a couple of Advil and cried myself to sleep. By Wednesday, my arms were so weak that I couldn't lift a glass without assistance. I began to contemplate the possibility that this was more than just my regular post-chemo agonies. During that night, I woke up several times moaning or crying from the pain. On Thursday morning, I told Don that I was going to have to go to the hospital because this amount of difficulty was obviously not within normal limits.
Blood tests at the hospital revealed that my CK (creatine kinase) level was more than 600. That's 3 times the normal amount. The doctor diagnosed a mild case of rhabdomyolysis, also known as "muscle wasting". It happens when the muscle fibers begin to break down and myoglobin is released into the bloodstream. It is extremely harmful to the kidneys, and can even cause kidney failure in extreme cases (thankfully, mine was very, very mild).
The treatment for rhabdomyolysis is mass quantities of i.v. and oral fluids. I stayed at the hospital for six hours and received i.v. fluids, then the CK test was repeated and my level was beginning to drop. I came home and began a regimen of LOTS of fluids here at home. I will have the blood test repeated on Monday.
Due to the intense pain and weakness in my arms, I have been helpless and truly miserable. Even though I can finally lift a glass again, if it's not too heavy, I have a hard time doing many ordinary tasks. I can't roll myself in the wheelchair or buckle my own seatbelt or lift my laptop. I can't sew, can barely type, and just the simple process of getting dressed today made me hurt so much that I had to take Advil. It really makes me think about how much I have taken my arms for granted. My legs have failed me again and again, but I could always depend on my arms. Now, I wonder how long it will take to rebuild the lost muscle fibers and regain full strength of my arms. It's a sobering prospect.
How many ways can my body betray me?
:-) Sharon
P.S. - For those of you who haven't heard: Yes, the wheelchair came back! The airline found it and delivered it to our hotel at 3:30 in the morning on Thursday. I was really happy to see it!

13 Comments:
so have you called Dr. C in LA?. Does this mean the neulasta for all of it's side effects would have been the lesser of 2 evils. I know both you and Don are smart people that are educated about what your cancer and treatments holds for you BUT have you talked to, was it Virgina????? The brilliant lady at the Cancer Treatment Center. PLEASE SL tell me what I can do, make phone calls????? Come to Mo'town to make Chicken Soup. Use those of us that are here for you.
Judy
My thoughts are with you Sharon... yet another difficult step in this journey we call life. Hopefully things can only get better from here forward.
I can only imagine the twinkle in your eye seeing your trusty wheelchair after it's absence... although I did have my fingers crossed for a new one for you! lol
Dear sweet Sharon, I guess if you're happy for the old wheelchair, I'm happy too. But, I was hoping you would get a new one compliments of the airline.
I would hope that your doctors would prescribe something a little stronger than Advil for your pain. It's important that you be able to sleep through the night so that you can gather your strength for another day.
I'm sad that this last round has resulted in such a setback. But, I'm hopeful that with your indelible spirit, this will only amount to another bump in this crazy road you travel. My heart is with you dear lady. I wish for you all the best. Tomorrow will be a better day.
Love,
brucey
How frustrating to not have use of your arms! I am sorry for the pain and sickness that you have to deal with so frequently. I really hope this passes soon.
Sharon, I am so sorry for what you are going through. I cannot imagine how painful that must be.
I am sending you a bunch of hugs, prayers, positive thoughts and energy :)
I am happy that you got your chair back, because I know it made YOU happy. :)
Please keep us posted when you can.
Love, Deb(inOHio) xo
Oh how frustrating. I am so sorry for this set back. I hope your muscles repair themselves soon!
Sharon.
!Don't give up!.
Best regards from Spain.
As always, my thoughts are with you. Just wanted to let you know that....
I ma sure you werre very happy to see your oldf aithful friend,mr.Wheelchair!
Hugs and prayers to help you feel btter.
Sharon,
I'm so sorry you've had to go through this scary time! I'm proud of you for following up even though I can imagine going back to any hospital was the the last thing you wanted to do.
Keep swimming!!
Big Texas Love,
Debra
Hang in there Sharon!
My thoughts and prayers are with you as always! So sorry for yet another setback. God really needs to give you a break. I will have to talk to him about that! ;)
Wish I could do something more to help you! Keep fighting!!
luv n' hugs
Rhonda(inWi.)
Just keep swimming Just keep swimming! thinking of you as always Duchess! Much love, Shellz
Hi Sharon,
I'm so sorry that this is happening to you. I'm so glad you have Don by your side. I can't imagine your pain. Thank you for getting the strength up to type another blog. I look forward to each one, just to know you are still out there fighting.
much love,
theresa
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