Thanks for thinkin' of me

JDuke
JDuke Member Posts: 438
edited March 2014 in Anal Cancer #1
I last posted on June 30th the day of my first chemo infusion. I just reread it and laughed at my comment "hope I don't hit the wall in a couple of days...". I would say now that it was an understatement. I felt unbelieveable energetic on Thursday (day following treatment) just at suggested by the infusion nurse, due to the steroids given preceding the infusion. Friday started out ok. I went and got my hair cut shorter anticipating the "fallout". Accompanied my girlfriend to Ulta afterwards and experienced the onset of the downward spiral. By Friday p.m. I was on the sofa feeling like I had the worst bout of flu ever taking over my body. By Saturday a.m. I was in absolute agony. It was the most unusual pain I have ever experienced. I could only explain it to my husband as feeling like the inside of my body was a pinball machine. It was as if there was a hot metal ball zinging around my anatomy, never hurting all over at once just continually bouncing from place to place. Deep, seering ache...pelvis, shoulder, back, arm, hip, foot. I had periods of not being able to keep my legs still, just kicking my feet, as if the motion would cause it to cease, it did not. Instructions were, no aspirin, tylenol or aleve type products. Nothing that could mask a fever. I tried the hydrocodone I had from the VATS procedure, it made very little difference. This lasted through Monday evening. I had the queasy stomach thing and just the thought of anything to eat or drink was overwhelming. My husband was relentless in his efforts to make sure I did have a mouthful of something periodically. I felt horrible for him, I could tell he felt so concerned and helpless, especially during my fits of crying and saying "I don't think I can stand this". This lasted through Monday. Tuesday was better and by Wednesday... I was almost myself again. Everyday was an improvement. By the weekend I felt just fine and knew that come the 21st I would be prepared to get back in the ring for round two.

I went to see the med/onc this past Wed. and told her all the details. She expressed that it was the Taxol and that body ache is a common complaint. She suggested that I do not wait for the pain to catch up to me this next infusion, but to stay ahead of it. She did give me a prescription for a muscle relaxant and said to take it in conjunction with the hydrocodone. Her nurse told me that her sister had a similar experience with her chemo and that she took Benedryl to make her sleep and that I could take it with the other meds. So my plan is to start on all of it Friday am and just sleep until the following Tues. At least I won't be taken by surprise this next time, I will have an idea what to expect. She has scheduled me for a PET on Aug. 16th to check the progress.

I have a new hobby thanks to the chemo. Wig shopping. Local stores, Ebay, Internet, catalogues. Waiting on two to be delivered. It is kind of fun to pick out styles that I would have never thought of trying with my real hair. My hair is almost gone. I have collected it all in a ziploc bag and once the fallout is complete I am going to scatter it around the ligustrum tree in my front yard in hopes that the birds will use it for their nests. We have a cardinal, sparrow and mocking bird currently nesting in our trees.

Sorry it took me so long to post. I must be honest and say that I was just giving myself a break from focusing on it. I appreciate all of your concern and thoughtful words as always. You are a special group and it means so much.

Blessings to all,
Joanne

Comments

  • z
    z Member Posts: 1,414 Member
    #2
    Joanne
    Hi Joanne,

    Thank you for letting us know how your doing. I'm sorry you had to suffer such awful side effects. Maybe that pin ball feeling means the chemo is destroying the cancer it finds. I know I've read that the chemo causes our immune system to wake up and attack foreign cells. I'm glad that the uncomfortable side effects have ended and you are back to yourself. As the dr said if you stay ahead of the pain, then hopefully the side effects won't be so bad. I hope you find a wig you like, I know thats what I would do if I had to. I will be praying that when you have your next infusion, that you will have a much better experience with the side effects and they will be minimal or none at all would be even better and this tx destroys all cancer cells. Keep us posted. Lori
  • lizdeli
    lizdeli Member Posts: 569 Member
    #3
    z said:

    Joanne
    Hi Joanne,

    Thank you for letting us know how your doing. I'm sorry you had to suffer such awful side effects. Maybe that pin ball feeling means the chemo is destroying the cancer it finds. I know I've read that the chemo causes our immune system to wake up and attack foreign cells. I'm glad that the uncomfortable side effects have ended and you are back to yourself. As the dr said if you stay ahead of the pain, then hopefully the side effects won't be so bad. I hope you find a wig you like, I know thats what I would do if I had to. I will be praying that when you have your next infusion, that you will have a much better experience with the side effects and they will be minimal or none at all would be even better and this tx destroys all cancer cells. Keep us posted. Lori

    Sorry you are going through this
    Joanne
    Thanks for updating us, it is good to hear from you. It sounds like such a terrible experience, I feel so sad that you have to go through this. You are an inspiration to all of us and you are strong. Kick it's **s just like you did the liver met. I am praying for you and from my heart I wish you a speedy recovery and successful outcome.

    God bless,
    Liz
  • Chris3
    Chris3 Member Posts: 58
    #4
    Sorry to hear about your rough time
    Joanne,
    Thank you for taking the time to update us. So sorry to hear about how miserable you felt. Hopefully, the next session will go better with the muscle relaxant and the hydrocodone. Also glad to hear you found some tasty flavored water to keep you hydrated.

    Your idea of "donating" your hair to the birds for nests is such a beautiful idea!

    Wishing the best to you,
    Chris
  • pjjenkins
    pjjenkins Member Posts: 173
    #5
    Hope today finds you feeling okay
    I started catching up on posts by reading from the bottom so was very glad to see you posting after thinking this morning that you still weren't "back". The birds donation is great! Your creativity is wonderful.

    My nephew went through a cocktail of chemo back a number of years, one of which was Taxol and I stayed with him through one awful night of aches and cramps. Please do "keep ahead" of the symptoms - I truly hope it will work!

    I like that you are thinking of it as going into the ring because you are a champ! You will prevail! And we will all continue to cheer you on.

    Blessing back atcha!

    Priscilla
  • sissy310
    sissy310 Member Posts: 300
    #6
    I too am sorry you are going
    I too am sorry you are going through all this. I hope that today finds you feeling better. I am glad you wrote something in here to let us know how you are doing, that you are okay. I found your thoughts of putting your hair around the tree for the birds to use as nests a beautiful gesture in the middle of everything you are going through. What a unique woman you are. Please keep us posted. You will be in my prayers and thoughts. Marilyne
  • mp327
    mp327 Member Posts: 4,440 Member
    #7
    Hi Joanne!
    You certainly have been in my thoughts and prayers lately, so it's very good to hear from you! I'm sorry you had a few bad days during this cycle of chemo, and also that the birds in your front yard will soon be enjoying your fallout, but it sounds like you bounced back from those down days and are ready to go back into battle. I will be thinking of you on the 21st. and hope that you know how to combat some of these side effects better, or as you have already told us, just sleep through them, which sounds like a good plan. May this be an easier round for you. Please keep us posted when you're up to it. Continuing those thoughts and prayers for you--

    Martha
  • SueRelays
    SueRelays Member Posts: 485
    #8
    mp327 said:

    Hi Joanne!
    You certainly have been in my thoughts and prayers lately, so it's very good to hear from you! I'm sorry you had a few bad days during this cycle of chemo, and also that the birds in your front yard will soon be enjoying your fallout, but it sounds like you bounced back from those down days and are ready to go back into battle. I will be thinking of you on the 21st. and hope that you know how to combat some of these side effects better, or as you have already told us, just sleep through them, which sounds like a good plan. May this be an easier round for you. Please keep us posted when you're up to it. Continuing those thoughts and prayers for you--

    Martha

    You ARE our Matriarch Joanne
    You ARE our Matriarch Joanne and we all worry when we don't see your smiling face on here!
    Always in my thoughts and prayers!!!
    You have been through so much, but I have to believe there are BETTER DAYS ahead!!!!
  • duckyann
    duckyann Member Posts: 159
    #9
    SueRelays said:

    You ARE our Matriarch Joanne
    You ARE our Matriarch Joanne and we all worry when we don't see your smiling face on here!
    Always in my thoughts and prayers!!!
    You have been through so much, but I have to believe there are BETTER DAYS ahead!!!!

    I too am sorry that you had
    I too am sorry that you had such horrible side effects. I will keep you in my thoughts and prayers that the 2nd round does not do a number on you like the first. Take care!!!

    Nancy
  • cbs6931
    cbs6931 Member Posts: 63
    #10
    Joanne, More Well Wishes!
    Funny about the hair... that is exactly what I did with mine, collected it in a ziploc and then scattered it on top of bushes in the back yard. There are probably nests all around lined with it. Its taken about 2 months for mine to start growing back in and I sure won't be taking it for granted again.

    Glad you are through the first cycle, and hope that the others will not affect you as badly. If the benedryl does not work for you as a sleep aid. I've taken other aids that do not have the tylenol in them. One was made by tylenol, the one I take now if I need something is the local store brand.

    Well wishes, thoughts and prayers for you!

    Cathy
  • tpmack37
    tpmack37 Member Posts: 14
    #11
    You're blazing the trail, Joanne
    Thanks for your story. I think I will print it out and bring it with me when I start. (For those who don't know, Joanne's experience has played a part in my story since her trip to MD Anderson. She contacted me out of the blue, knowing I had a similar case :) I used info from her and Winnie to encourage my Doc to look outside the box)

    Because of Winnie's story, and Joanne's story, I will go on this same chemo regimen at the end of August.

    I was pretty enthusiastic about it, until reading this, Yikes!

    But we do what we have to do and Winnie is alive and kicking, and Joanne is ready for round 2, so I think I can do it!

    Thanks,

    Tim
  • dasspears
    dasspears Member Posts: 227
    #12
    Wig
    If there is an ACS office close to you, they provide free wigs!!! I got mine there and when I was finished with treatment and had hair again, I donated it back. The wigs are thoroughly sterilized before they give them out.
  • dasspears
    dasspears Member Posts: 227
    #13
    tpmack37 said:

    You're blazing the trail, Joanne
    Thanks for your story. I think I will print it out and bring it with me when I start. (For those who don't know, Joanne's experience has played a part in my story since her trip to MD Anderson. She contacted me out of the blue, knowing I had a similar case :) I used info from her and Winnie to encourage my Doc to look outside the box)

    Because of Winnie's story, and Joanne's story, I will go on this same chemo regimen at the end of August.

    I was pretty enthusiastic about it, until reading this, Yikes!

    But we do what we have to do and Winnie is alive and kicking, and Joanne is ready for round 2, so I think I can do it!

    Thanks,

    Tim

    You can do it!
    We have faith in you!
  • lemonade
    lemonade Member Posts: 63
    #14
    dasspears said:

    Wig
    If there is an ACS office close to you, they provide free wigs!!! I got mine there and when I was finished with treatment and had hair again, I donated it back. The wigs are thoroughly sterilized before they give them out.

    Blonde
    Joanne -

    I think you look cute as a blonde!!! I didn't recognize you at first without your dog and your other hair color.

    Barbara
  • pjjenkins
    pjjenkins Member Posts: 173
    #15
    tpmack37 said:

    You're blazing the trail, Joanne
    Thanks for your story. I think I will print it out and bring it with me when I start. (For those who don't know, Joanne's experience has played a part in my story since her trip to MD Anderson. She contacted me out of the blue, knowing I had a similar case :) I used info from her and Winnie to encourage my Doc to look outside the box)

    Because of Winnie's story, and Joanne's story, I will go on this same chemo regimen at the end of August.

    I was pretty enthusiastic about it, until reading this, Yikes!

    But we do what we have to do and Winnie is alive and kicking, and Joanne is ready for round 2, so I think I can do it!

    Thanks,

    Tim

    Go for it!!
    Glad to hear you will go for this treatment! It does sound rough but hopeful.
    Many thoughts and prayers for you!
    P

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