Wednesday, January 09, 2008

Moving forward, sort of

I started this blog a year and a half after my melanoma diagnosis. In less than a month I will have been a stage III melanoma patient for three years. At one level, I can look back on this blog and feel that I've made some progress in moving on with my life. I no longer talk exclusively about my health, even though this blog was started as a means of dealing with the aftermath of my surgery for node positive melanoma. It used to be that every post was about physical issues I've had which started after my initial recovery from the groin LND. Actually, now that I think of it, my first few weeks of blog entries were about trying to move forward. I was still hopeful that I would recover from the aftermath of my cancer and get back to where I was physically prior to the surgery. I lost the first two weeks of posts when I crashed my blog. When I started it again, I began with my melanoma history and was again fearful that I was having a recurrence.
At one level I've moved past the recurrence fears. I know that I can't trust my body to give me any information. That's not strictly true. Obviously late stage severe symptoms would give me cues but I mean subtler hints. I have learned to live with the fact that chronic pain and neurological symptoms have to be managed and that my symptoms change. Beyond good days and bad days, I have new symptoms which I have to learn to ignore rather than go into alarm mode. I know it could be a lot worse. I am one of the lucky ones. I had a poor prognosis going in and that prognosis improves with each year I go without a recurrence. I have several years under my belt and know that each change is not worth panicking about.
I also know that I have to accept that I can't keep trying to get back to some place physically that I perceive as meaning I've recovered. I've stopped keeping logs which mostly make me feel like I'm falling backwards farther and farther. The fresh starts didn't work out. I am losing ground physically, and although it could be a lot worse, it's not something I can track if I want to feel positive. In theory focusing on improvement not cause was a great idea. The problem is I'm not improving. Sure, I'm better in some ways but in terms of walking more or farther, it isn't happening. I thought if I could give up on ever jogging or running again and focus on walking at least every other day that it was a reasonable goal and I would feel better.
The problem is that I have found I actually feel better if I have little or no physical activity. That goes against everything I believed and certainly what the pain specialist and other doctors thought. The guiding wisdom is that people with chronic pain do better if they are as physically active as possible. The problem is that I do better if I'm not trying to be physically active. I'm not talking about overdoing here. I'm talking about moderate walks. When I stopped trying to have daily or even alternate daily walks, I could hold off some of the newer issues I've been having in terms of symptoms. This has been true over the past few months. However, recently, even that isn't working. I don't want to whine about symptoms but sometimes it's hard to hold myself erect. I feel better when I give up and lie down propped up with a book. On the plus side I'm reading more offline with a full length book as opposed to the short pieces I read online.
What I probably hate the most is I'm finding myself looking ahead to the full body scan in March as the end all. I feel like if I can just get past that scan and have nothing new show up then everything will be ok. I know that's not true and it's irrational. Having a scan show that I'm not having a recurrence doesn't mean I'll feel better physically. I need to find a way to get past the idea of a scan being the magic pill. I am aware that I have kept pushing back signals that something may be wrong. I have had in the back of my mind, not too much longer until my scan and that will ease my mind. The problem is what if it doesn't.
I've had scans in the past which actually worried me more and I even had one where I was given the option of exploratory surgery or re-scanning in three months. I chose the re-scan and the mass got smaller and eventually went away so the assumption is that it wasn't cancer. Then there is the issue of, what happens when I'm far enough out from having active cancer that the scans are no longer part of my follow up protocol. At some point I may have to accept that I'm going to lose ground physically without the doctors being able to help beyond the management of symptoms. That may not be a matter of giving up so much as a matter of being realistic. I may have to accept that the whole thing is totally beyond my control. Which brings me to the reason for this slightly depressing post. I have felt like I wanted to write some kind of New Year post with hopes, dreams, goals, or something beyond the same old, same old. I find this year that I can't do that in any way shape or form. Who knows maybe by April Fool's day I can. This post explains how April Fool's day used to be New Year's day.


Anonymous said...

Funny we are having the same thoughts today. A few weeks of having other stuff to occupy the mind and ZOOM, recurrence worry flies right back with both a shaking fear and a strange comfort in the familiarity of it. I wonder that it is a rude kind of crutch...if the worry is there, then the reality (should that come to pass) won't be such a shock. Or the reality simply won't come if the worry is there.
Acceptance. Maybe.
Denial. Maybe.
Thinking too much. Yep.
However, mine is not accompanied by issues of chronic pain. I wish I could take that away from you, most of all, Darling Carver.
We both have to stick that worry in a back pocket and turn it into vigilance that we hold onto with both hands.
(Is that how vigilance is spelled?)
Always sending you the very best thoughts.
Love, K.

And now… bring me that horizon… and really bad eggs… Drink up me hearties, yo ho!!
Capt. Jack Sparrow (Johnny Depp)

Smalltown RN said...

It's interesting for me today to read your post. It is 7 years ago yesterday that my youngest daughter was treated for cancer...after her surgery there were the month follow ups then the 3 month 6 and then yearly.....the May I believe is her last follow up appointment. But I know everytime it comes close to May I start to freak out...I know they are going to do xrays...I know they are going to do blood work....and until we get the ok...I feel sick in my stomach....

And as for me...well I hate this aging August I was diagnosised with ulcerative colitis...this has been giving me grief....but I tolerate it...then in November I hurt my shoulder at work...I am not healing as we all thought...what is happening instead is my symptoms are getting worse and are just not making complicate matters my GP is off sick for another 4 weeks...and I don't feel confident in the doctor I am seein as his replacement....I am curious if I have MS I have been to many sights and seeking out information on my own...preparing to ask the right questions when I go to the doctor...but because of all that is going on with my shoulder and colitis, I don't want to appear as a I feel stuck between a rock and a hard place.....I wish I could go back to the mainland and see my old doctor and I know he would have every test done quickly to rule things out.....

Oh I shouldn't be going on about me...the point for mentioning what I that like you...we keep things in the back of our minds..the what if's...and feel bad that we do are faced with a devasting desease and I believe you are entitled to feel what you feel..and work within your comfort zone....anyhow...those are my thoughts....try and have yourself a good day....

Mel said...

I feel the same way you do as far as the exercising goes. From what I've read about fibromyalgia over the years, exercise makes symptoms worse. I'm not sure if this is part of your problem or not, but I'm finding myself with chronic pain and stiffness and resting seems to be the best medicine.

Good excuse to be lazy, I say!

Carver said...

Hi Kim, I know what you mean about worry being a kind of crutch. As always the best quotes. That made me laugh out loud and laughing is always a good thing. You have had a lot to deal with and are such a good friend. I wish neither of us had melanoma but since we do, I'm glad we got to know each other. We'll both get past these spring anniversaries and onward we go. Love, Carver

Hi Small Town R.N,

I'm sorry your daughter had to deal with cancer. As a mother I can think of few things worse than having that happen to my child. I'm so glad she's 7 years out and I'll be sending out good thoughts for her May check up.

I'm also sorry you've had to deal with so many health issues lately (you and your husband). It must be so hard not to be able to get back to work yet. Also, not having your regular doctor available to bounce everything off of. I didn't think you went on about your health problems at all. I'm interested and I know so well how hard it is when you don't want to appear like a hypochondriac but you want to get to the bottom of it. I hope you'll get the right kind of help soon.

Take care, Carver

Hi Melissa,

I've been labeled with fibromyalgia for want of a better dx. My doctors put it on my chart but acknowledge I fit in some ways don't in others. My ONC says a percentage of people have chronic pain after the LND. I'm glad to hear there is some validity in not exercising because I thought I was supposed to do as much as possible but it doesn't help and frankly I'm ready to be lazy for a while.

Take care, Carver

Jeanne said...

Carver--lazy sounds good. You sound so much like me in this post: I want to be stronger physically, get back to where I was at some point in the past, and it is very hard to accept that it ain't gonna happen.

I still have pain from my pelvic fracture, and I can't decide if exercise makes it better or worse--some days it seems one way, other days the other.

One question: Would it help to have your scan early? I know I got a huge burst of mental and emotional energy from my good news in Tucson, even though physically I'm still dragging. Just a thought.


Jeanne said...

Oh, forgot to say: great photos. Really beautiful.


DeLi said...

Hi Carver,

Im sad to hear about your post. And i feel for you as i have important people in my life who are suffering and fighting aganist C. I thinking writing and sharing about it is good to breathe out and make others understand. It is a reminder for peopel liek me how health shoudl not be taken fr granted and how fragiule life can be.

and your pictures, may I say.. are so beautiful!


Theresa said...

Hi Carver,
Although I really can't relate on the cancer side of things- I do know that sometimes our body really tells us what it wants-
right now your body is saying rest, so it is ok to rest. But you might want to rest outside in that beautiful back yard of yours so you get that nature feeling to keep your spirits lifted.

Carver said...

Hi Jeanne,

I think getting an earlier scan may help. I put the call in to schedule it and did ask if it could be in February instead of March. I'm supposed to call Friday if they don't call me so if it's not already scheduled I'll ask if there is any reason to wait rather than go ahead and do it. Take care, Carver

Hi Deli,
Thanks for visiting and commenting. It does help me to write about it and I always appreciate kind responses like yours. Take care, Carver

Hi Theresa,
Going outside is a good idea. I need to remind myself to do that even when I'm not walking much. This is a good time to watch the birds if I sit quietly in my garden. Take care, Carver

Yolanda said...

I really appreciated your honesty with this post and I want you to know that your friends are always right there beside.
I deal with a lot of the same issues you do except mine relate to chronic pain.
I find that blogging is at its best when we are really honest with others about our fears and are able to find comfort and supoort for our journey thru this medium

Carver said...

Hi Yolanda,

Thanks so much for your support. I am sorry you have to deal with chronic pain. It is helpful to blog about the rough times as well as the good and I really appreciate your insights. As ever, Carver

Gledwood said...

... what a beautiful post ...

Carver said...

Thanks Gledwood, I appreciate that. Take care, Carver

Christy Woolum said...

Thanks for your honesty. Good thoughts and incredible pictures.

david mcmahon said...

Dear Carver,

I had no idea about this part of your life. This is one of the most powerful posts I've read in a long time.

I know you'll say it's just a simple teling of a difficult period in your life, but you have told it with simple power.

God bless you in your recovery


Carver said...

Hi Inland Empire Girl,

Thank so much for your kind words. I appreciate it a great deal. Take care, Carver

Hi David,

Thanks you so much for your thoughtful comment. It has helped me to be able to write it out on my blog which surprises me in a way. I appreciate your well wishes very much. Take Care, Carver

jmb said...

Oh Carver, I am so sad to see you down. You are always so matter of fact in what I consider a terrible situation.
I do hope that posting this was cathartic and you are feeling better.
Take care my friend.

Carver said...

Thank you so much JMB. I do find it helpful to write about it and I appreciate your support. I don't want to dwell on the negative but sometimes it does help me to spell it out on my blog and then move onward. I am starting to feel somewhat more positive and I'm sure I've just been in a temporary slump. Bill and I are going to go on a walk Saturday and he's great about letting me set the pace. I realize I can't totally stop moving and it helps that he encourages me to take a walk with him without any pressure. Take care, Carver

eastcoastlife said...

So sorry to hear that you are hurting and feeling down. I pray the pain would go away.

You are so strong. I don't know what to say in order not to hurt you.


Carver said...

Thank you for your kind words eastcoastlife. I appreciate it very much. Take care, Carver

Heart of Rachel said...

Hi Carver,

I'm sorry about what you're going through. I could imagine how difficult it is to face the reality of an illness. Your post has touched my heart. I really hope that you can recover and have many more quality years ahead of you. Sending you my prayers. God bless.

Carver said...

Thanks so much Heart of Rachael, I appreciate your kind words so much. Take care, Carver

Anonymous said...

Well, sometimes I'm not really sure that the doctors and all the experts really know the best.... The persons that actually lives with the condition knows more about their own body's reaction - if we listen enough.

I know this since me too have chronic pains, both back problems & fibro and maybe some struma on the way, too high values. Before the fibro they ordered me to move more with my bad back, but it only made things worse. Much worse.

It's also a matter of finding the right balance between the body and the mind.

Sorry to hear about your troubles. I do hope that you get it all sorted. I think that you're doing quite fine, considering the matter.

For me, it works if I take one day at the time. I've decided to make THIS DAY to the best possible I can and not to think too far in the future. It's our duty to ourselves to take care of the days we have. It's only we ourselves that can do it. Sure I find it hard sometimes, but I'm so darn stubborn :-D


Carver said...

Hi Life Cruiser,

I am sorry that you have had to deal with chronic pain too. I think you have a great attitude. That zest for life and taking each day and making it the best day it can be shows throughout your blog. I appreciate your thoughts a great deal. Take care, Carver

YTSL said...

Hi Carver --

I'm so sorry to hear about what you have to go through. Wish that things could be better for you physically. What strikes me -- who, granted, knows you mainly through our both being Photo Hunters -- as amazing though is that you appear so well mentally and psychologically. I hope you stay well in that regard, and keep on blogging -- and visiting the blogs of others -- if it is an activity that you get as much out of as I do.

Carver said...

Hi YTSL, Thank you so much for your thoughtful comment. It does help me to blog and I enjoy visiting other bloggers. The photographic memes have been great and I'm glad to have gotten to know bloggers like you through this activity. Take care, Carver