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Still got it!

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

I had the drain removed tuesday. Currently no signs of infection or abscess. I played golf today, the first time since my diagnosis. That's a little more than a year. I shot 3 over par from the pro tees. Not bad considering I still have the hole between my ribs from the drain.

I know that little tid bit wasn't cancer related but it feels good to get a few moments of my once normal life in. I don't know how long it will last but a few weeks of normalcy is going to be most welcome. I said a prayer at the end of my round today. My prayer was that everyone on this board be able to experience a moment of normalcy. So sometime this weekend, get out, go in, whatever you're into and enjoy a moment of normalcy. Put all your cares and worries on the back burner, they'll be there when you get back. The moment maybe fleeting or it may linger, whichever you receive is a blessing. Good Luck and you're welcome!

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Yayaya John!! That is so wonderful... and from here on in, treat every day as a normal day... whatever you envision your "normal" to be. We all come from different backgrounds, different lifestyles, different hobbies, likes and dislikes.

Me, my passion is being involved with the theatre and now, I get great pleasure from supporting the young folk who aspire to act, sing, and dance. I am sooooo lucky that, despite my ongoing chronic pain (the chemo managed to aggravate what was already there in the way of arthritis, as well, has done damage to nerves, so there is nerve pain also), I have been able to continue having a normal (for me) life this past 17 months that I have been OFF chemo.

Hehehe... you've all heard me whine in one topic or another about how I really wish I could go out walking with my dog, like the good old days before diagnosis. Even when I was in pain because the tumour had perforated the intestinal wall, formed an abscess and a severe case of peronitis had developed, I hadn't been diagnosed yet and I still would go walking 4-5 miles every day... and kept telling myself to quit being such a wimp ;)

Fast forward to the completion of 8 months of chemo and 6 weeks of daily radiation and all of a sudden I couldn't do the walking anymore. I blamed it on the arthritis which had gotten worse because of the chemo...but as time has gone on, there has been more pain. The nerve damage/neuropathy in the feet/shins. Then it hit the lower back. Neck and arms are affected to.

Well, today I got a new diagnosis (new to me). I have CPS (Chronic Pain Syndrome) which is not uncommon if someone has had a severe injury or from cancer treatments. Who knew? It is complex and hard to diagnose but my GP is pretty sure I have it. It is different than Fibrolmalygia in that CPS mostly stems from the central nervous system. Nerve endings are sending "pain messages" to the brain... in my case, from all over the body, not just the feet/shins. These are damaged nerves from the chemo.

My doctor has given me a 5 day sample supply of "Tramadol" which is a monoamine uptake inhibitor and centrally-acting analgesic, used for treating moderate to severe pain. I was doubtful. I've been in pain for so long, it's now affecting my sleep and what I can actually do physically. Heck, walking to/from the car has been a challenge, let alone getting in/out of it. Tramadol is to be taken 1 pill/day. I took one shortly after I left the doctor's office.

About an hour or so later, I couldn't believe it!! I'm not totally pain free but on a pain scale of 1-10, my ongoing pain level was about an 8.5... and I just continued doing what I had to do, even with the pain. After taking the pill this morning, my pain level has probably been about a 3-4... huge difference.

I thoroughly enjoyed working at the theatre office today and now (keeping fingers crossed) am actually getting excited about the summer shows. I may be relatively pain-free for the whole summer!! Chemo free and Pain free... there's actually a possiblity this will be the case!!

So I'll be sure to keep everyone posted as to whether I get to have a "normal" summer. Well, the not normal thing would be that I get the summer off... I won't actually be working my day job (for the government)... but able to spend the whole summer in the most gorgeous park, working on two Broadway shows at an outdoor theatre that seats 1500 :) Now how normal is THAT??? :)

Huggggggs,

Cheryl

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Cheryl,

I'm sorry to hear about all the pain you deal with, but glad to hear you got an actual diagnosis and something that can help to control it. Although I've been feeling pretty good and am enjoying many "normal" days again, it's relative in that I do also experience many aches and pains. I've sometimes wondered if I have some kind of fibromyaligia or something like that that's come on since chemo. Never before did I have such muscle aches, as well as some pains in joints. It's not like that everyday, so it's definitely not as severe as you describe so I don't think it's CPS, but it's very real many days. Some days I feel like I'm sore from head to toe like I ran in a marathon or had a very hard workout, when I did absolutely nothing that I should have gotten sore from. It's weird. I wonder if it could be some kind of nerve damage from the chemo (oxy?), or if it's some other kind of ailment like arthritis or fibromyalgia that's come on.
I talked to my Dr. about the joint pains & had bloodwork done for rheumatoid arthritis (my mom has that), but it all came back normal. I really didn't talk to the Dr. about muscle aches. I kind of thought it could be from the chemo, but am not sure. Any ideas about that? How do they test for something like fibromyalgia? It seems like I remember hearing that's something hard to diagnose.

Well, hear's to our new "normal"! Cheryl, I'm so glad you've gotten the pain under control and can enjoy the outdoor theatre- it sounds great!

Lisa

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Lisa,

What you are describing sounds more like chemo related stuff that fibro. As least for me, the fibro is everyday although over the years has had periods of 'remission'. Any stress or health issues brings it immediately back on a daily basis. If you are concerned though, see a good rhuematologist. I know chemo can cause what you describe but as a fibro sufferer for many years, don't hesitate to get evaluated and treated. There are things that can help.

I hurt most when I move the least. Exercise really helps - walking, swimming, yoga and pilates are best for me.

Make sure you get enough sleep, even if you need a nap.

Hot water helps! Long baths or soaks in a hot tub really, really help me. If it is really bad I'll go to bed and use my electric blanket on high - a whole body heating pad.

I'm on Lyrica and Effexor for pain with Darvocet for the really aweful days. There are other options but this is what works for me. I usually use the Darvocet more for the spinal arthritis than the fibro, but sometimes it's hard to tell where the pain originates.

HTH - and go see a rheumatologist!

Kimby

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

I agree with Kimby, Lisa... it sounds like your pain is chemo related. And yes, it could be CPS because one of the possible causes of CPS is chemo treatments... gee, go figure, eh??

I have gone the gambit with tests and what not. I did see a rheumatologist (Lisa, that's the word I couldn't remember how to spell in the PM I sent you) and they ruled out RA for me.

Ooooh, Kimby... I would love to be able to have long, hot soaks in the tub! But alas, the arthritis in my knees won't allow me to get into the tub. Well, correction... I can get INTO the tub... it's getting out of the tub that's the problem since I can't bend my knees enough to get out. So, it's hot showers for me... or, when luck has it ... jacuzzis and hot tubs :)

Another interesting difference... when I'm moving, that's when the pain becomes more pronounced... yet, when I'm resting, then the neuropathy/nerve pain in the feet/shins becomes more pronounced. So whether I'm moving around or being completely still, there's always a pain of some sort happening. But today was Day 2 on the Tramadol (combined with Tylenol #3 with codiene). The pain level has definitely gone down... from an 8.5 to a 3-4 :) :)

Ok... time for me to hit the hay! Nitey-nite!

Huggggggs,

Cheryl

jenben59
Posts: 144
Joined: Jan 2009

I hope you have many more happy healthy days.

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Thanks so much for sharing that with us, John. That was a great start to my morning! I promise to be 'normal' today and for as long as the Lord allows!

Thank you for praying for us. I also hope everyone on the board can enjoy the weekend and find a ray of sunshine no matter what the sky has to say.

LOVE your attitude!

Diane

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

Great job on the golf. Did you watch the Masters last week? In a way, I was glad Tiger and Phil didn't come back to win. It gave 3 other guys a chance of a lifetime!

Thanks for being such an inspiration!

Vicki

impactzone's picture
impactzone
Posts: 542
Joined: Aug 2006

Wishing you the best as well!
Chip

dixchi's picture
dixchi
Posts: 438
Joined: Jun 2008

Thanks for the prayer......with being told that the big scare
was actually nothing....I am experiencing a period of normalcy,
went on an all day wildflower hike in the Appalachian foothills
yesterday and was able to hike all day without getting tired...
I would have to seriously say it is a "new normal"....not exactly
like before ca, but it is wonderful nevertheless....and I will
definitely take it and keep it going until July when next scan
is due.....hope you continue to have many days and moments of
normalcy as well....

Barbara

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

I'm so glad you got to enjoy a golf game and feel like you're having "normal" life again!
This last week, I saw and talked to a couple of friends and didn't think about it until later, but my cancer didn't come up at all in conversation. I feel like I must look and feel well enough that my cancer and how I'm doing isn't the first thing people ask me about again. I certainly don't feel neglected by it- I'm sooo glad to have just "normal" conversations and activities! I was at the beach with my daughters yesterday under our beautiful San Diego blue skies- it was awesome

Here's to normal, everyone!
Lisa

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

John,

Isn't 'normal' just wonderful? Today I went with my 17 yr old son (junior in High School) to a college visitation day. Just normal stuff, 73 degree sunny weather, time with my son and husband, lunch out.....all in all a perfect day. I'm sure many parents were anxious to leave and get on with their lives. I enjoyed every minute of it, even when I had to sit downstairs during one of the presentations because I was too tired and sore to make the stairs. I walked most of the campus with my son and didn't need the scooter at all. We talked about what he liked and what he didn't, what he's looking for in a school, career goals, goals for the next 4 yrs, 'normal' stuff. Yeah!

Kimby

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I'll have a glass of Merlot and toast to normal! :) I'm not a golfer, but my father and brother are, so I know how GREAT 3 over par from the pro tees is! Thank you for your prayer, and I continue to pray for you as well.
mary

tootsie1's picture
tootsie1
Posts: 5064
Joined: Feb 2008

I'm glad you had such a great day, and thank you so much for the prayers.

*hugs*
Gail

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Great post. We had normal today too, actually fantastic. Dick surfed this morning and we went out on our little boat. It was beautiful today! Dick had his 3rd round of Folfox Tuesday, he had nausea but he feels better on and in the water. It was good to have a normal day as our youngest daughter spent the past 9 days in the hospital for seizures and constipation. She got out yesterday. Normal felt good today.
Aloha,
Kathleen

spongebob's picture
spongebob
Posts: 2598
Joined: Apr 2003

Katie and I have been accused of being pretty AB-normal! Great post, JT, and here's wishing you and all the SemiColons out there a normal or totally AB-normal (whichever is your pleasure) day!

- SB

sharpy102's picture
sharpy102
Posts: 370
Joined: Apr 2009

Hello Cheryl,

Just read your "little bit long" thread...:) Anyway, I've read your on Tramadol which is good. My mom used to be on that too (bit bigger those: 2 times a day) with Cerucal. It helped her a lot too for a while.
Well, just so that I don't go off topic: we had a "normal" day too...and I even could make my mom WALK outside the porch and sit there for an hour....I was so happy, I almost opened a champaign! :D (those of you who don't know, my mom usually just in bed sleeping, or being awake in bed but crying)
So, I loved today! :)
I wish you all the best~
Sophie

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