Thursday, March 01, 2007

Just Call Me the One-Handed Wonder

Tisk, tisk. With my memory I should be blogging more regularly. But, ya do what you can do, yo.
Is it actually March first? I don't like how time flies. Especially when I'm somewhat sidelined and unable to do as much as I'd like to do with my time. I hate saying it, but the last 2 months haven't consisted of much more than dragging myself out of bed between 10am-1pm, then plopping myself on the couch for the rest of the day to watch TV, read, make phone calls (usually related to medical or supportive care, meaning social work or group, that kinda thing). Up until the last 2 or 3 weeks, I was able to drive so I could take myself to this or that appointment but I've lost that independence now. For real excitement, I'd have over only a couple visitors a week (too much socializing drains me), watch DVD's on weekend nights with friends. All because of PAIN!

I don't know where exactly I got the idea that most cancer pain was manageable. Like so many other impressions I had about cancer until I was thrown into this life, I just recently realized that my impression, while not untrue, was a bit simplistic, or a bit black and white. My cancer pain can be managed, but not with a decent quality of life while I still feel like I can and should have a relatively normal lifestyle... going out for dinners, shopping for fun OR necessity (I wish I could go grocery shopping!) , having some drinky poos with friends. I feel mentally and physically ready for this, minus the pain.

Here's the stab at the heart: In order for my pain to be completely under control, I'd be a zombie!

I kept returning to the cancer centre saying, "This isn't working". So they'd up the doses as far as they could without nasty side effects occurring. It wasn't until a couple weeks ago that I go the nerve to ask what their goal was for me pain wise. In my head, I totally thought we were working to get me to the point I described above. But just in case, I didn't ask. Their answer broke my heart (how many times can a heart get broken?). They said they wanted to get me into a "comfortable resting state", which I took to mean comfy on the couch. And the truth was, I was pretty much comfortable on the couch in certain strategic positions. But I wasn't ready for that. That's not my life, not now. Beleive it or not, I still think of myself as a healthy person! Call me sick, and I think, "But I don't have a cold."

So, along came the CADD pump this week which is a rectangular box, about 9x2 inches and weighs like 2lbs. Part of the contraption holds my medication (Dilaudid) which flows through a tiny plastic tube, through a small needle, and into my subq tissue, luckily not a vein cuz that would hurt more since the needle and meds are replaced weekly. The initial dosing did nada but SHABAMMM! the second dose helps a lot!

I'm not nearly pain free, but I can handle it better and I'm grateful for the amount of "life" I've been given back. It's hard to explain but for 2 months everyday I wondered how many more days I could take. So, the day by day mentally is what got me by as well as trying to focus on what I did have and could do rather than what I didn't or couldn't. Must admit that it crossed my mind a few times how many bottles of different narcotics were sitting at my bedside. Had it been another person, a person without so much support, a person who knows not how and when to seek professional help, a person in a deep depression, those pills could easily have done a person in, not the cancer. I guess no one tracks this stuff? .....................................................

What the hell, I typed left hand only for 3 hrs. about this that and the other thing. I erased it!!!!! I can't repeat it, I don't want to. Well, now you know I can't use my right hand at all anymore, not only with the bionic arm! That's frustrating for sooooo many reasons, one being that blogging is a bitch now. But, much better than handwriting so I won't wallow in that long.

The only thing I have to say is that where my entry left off, it seemed like I was pain free. Nope, not at all. The way I went on to decribe it was like this: Instead of having 1 position be comfy on the couch, there are now several. I can do a few errands in a row if someone drives and holds doors and bags, but that gets me into a high level of pain which subsides after a while when I rest. So it's all about balacing need or desire with how much pain I'm willing to take. But if I pushed it past a few errands I'd likely end up in emerge again. So, my enthusiasm is all relative, but to me, right now, it makes a huuuuge difference in my quality of life.

Too bad so much got erased because I can only squeeze in one more entry before I start IL-2 in Buffalo on Monday. But we're leaving Sunday since I have to be at the hospital at the crack of dawn. I want to write about my feelings going into this treatment, many of which I've switched off for a while just so I can keep it together and get the most out of my days in waiting.

Blogging one handed is going to be a challenge going forward. Everything's a challenge these days. But I can handle 'em. One after the other, they keep rollin' in and the person I see in the mirror is not the one I knew 2.5 years ago, except for on the surface, and I'm certainly not talking physical surface. I'm different now. I just am.


At 7:35 AM, Blogger Chellezilla said...

Best of luck with your treatment in Buffalo. You'll be in my thoughts.

At 10:16 AM, Blogger Carver said...

Dear Sarah,

I can't even express how sorry I am that you are having to deal with so much pain. The resting comfortable plan must be so hard to deal with. I'm glad the CADD pump helped but I'm so sorry it can't be any better. You are so brave and honest. I hope IL2 will be exactly the right treatment for you. As ever, Carver

At 2:29 PM, Anonymous Anonymous said...

Dear Sarah,

I am currently between IL-2 treatments and here to tell you that you can do it, too. The scariest part of the treatment is the 'not knowing' part before starting. You are stong willed, and your optimism will get you through it. The doctors and nurses WILL TAKE CARE OF YOU. You will find that it is not as bad as what you expected.

You can do it.
All the best and good luck.

At 7:42 PM, Anonymous Kim (AL) said...

You are as formidable of an opponent as melanoma has ever taken on...your spirit and strength will see you through. You have millions of blessings coming your way!
If it is possible for your sweet husband to stop by MPIP and let us know how your doing, it would be awesome...if it isn't too much trouble.
Love to you sweet girl.
Take good care.

At 7:50 PM, Anonymous Anonymous said...

You probably have no idea how many people are reading your blog, all over the world, and how important you are to them. Thank you for writing.

At 4:43 AM, Anonymous Anonymous said...

hold the image you have of yourself as healthy. and drink in all the healing on all the levels. strength and light to you!

At 9:06 AM, Blogger Miss Melanoma said...

I am amazed sometimes how close a friend I count you. I find myself talking about you to my friends here in Dallas, and old friends in San Diego ask about you. I check your blog almost everyday, and can't imagine having taken this journey through melanoma without you as a source of strength and support. To hear that you are in such pain is disheartening, and I find myself advocating for you in my own way so many miles away.
I think you probably know the good statistics that come with IL-2. I truly hope that it is exactly what you need and exactly what will put your pain at ease. I feel positive about this treatment for you and know that you are strong enough to endure it. I used to hate it when people said, "You're so strong" or "so brave." But now I understand- seeing you go through this wondering if I could handle the same thing, I realize how strong and brave you are for not just withstanding this but for withstanding it with a stoic grace that leaves me in awe.
You are in my heart and I think of you all the time.

At 12:17 PM, Anonymous JanetteT said...

I will be thinking of you lots tommorow and the next weeks to come. I really hope that these treatments will work for you. They have to, that's just the way it is. (smile) Thank you for your update, I know it can't be easy.
Janette from the Netherlands

At 9:02 PM, Blogger mrbunsrocks said...

Sarah - just wanted to wish you luck going through this treatment. I hope they can improve the way you're feeling right now and that we'll be hearing tons more from ya soon.

At 9:44 PM, Blogger Christie said...


All the best of luck in Buffalo - you're always in my thoughts and prayers. :)


At 9:49 PM, Blogger medstudentitis said...

I just started reading your blog and I just wanted to say good luck with your treatment in Buffalo. You'll be in my thoughts.


At 6:45 AM, Anonymous Anonymous said...

Dear Sarah

I check your blog everyday and pleased to hear that the time to start IL-2 is here! I will be thinking of you and just know that this will be "the thing" that gets rid of that blasted mm for you.

Love from Oz


At 12:27 PM, Anonymous Anonymous said...

Best wishes for your treatment in Buffalo. If I could will it, this will be the treatment for you. You're in my thoughts and prayers.

Take care,


At 4:58 PM, Anonymous Anonymous said...

You can do this. My husband is in for IL-2 day one today too. It's his second round. What Christina said is true. It's not as bad as you think it will be. I hope the nursing staff is as good as he has here. YOU CAN DO THIS!!! So glad you're getting started.


At 1:16 AM, Anonymous Anonymous said...

Dear Sarah,
I check your blog have so many friends that you don't know personally on the internet (me included) who think of you often. Remember when things are tough to think of all your "friends" out here who love and care for you!
Stephanie from Washington State

At 1:21 PM, Anonymous Anonymous said...

Hi Sarah,

I just started reading your blog. I just wanted you to know I was thinking of you and hope Buffalo is going well.

Take care and thank you for sharing your life with us.


At 11:08 PM, Blogger SB said...

Wishing you all the best with your treatment.

On another note, have you ever tried the computer program called Dragon Naturally Speaking? You can train it so that it understands what you are saying and then you can just speak into a microphone and it transcribes your words for you.

At 12:20 PM, Anonymous Anonymous said...

The grace, dignity and serenity with which you are fighting this battle is not only an inspiration to me, but truly makes me want to be a better person and live a better life. You are having a remarkable impact on those who are reading about your journey here. Thank you for that. I wish you the very best with your treatment in Buffalo and will be thinking of you often.

Janna from Hitched!

At 11:11 PM, Blogger Cathy said...

Sarah, I just wanted to say that I found your blog a few months ago, thanks to Dr. K.

I'am thinking about you, and wishing you the very best of luck with your new treatment.

At 9:57 AM, Anonymous Roccco said...

I'm heading back in for my 2nd week of IL-2 on Monday. I'll be thinking of you. I was pretty scared my first day/first week due to the unknowns. The nurses and docs were there for me every step of the way - yours will be as well. I tried like hell to keep a sense of humor throughout my first week. Take your iPod or favorite music, your pillow, DVDs, and pics from home (loved ones, vacation shots) - tape them up in the room. That stuff helped me during my week. Hang onto that great attitude of yours! You can do this. Let's kick some melanoma butt on Monday! Hoping IL2 works for both of us.... - Rocco -

At 12:48 PM, Blogger Changa said...

Best of luck with your treatment in Buffalo. I really hope things are going well. You are an incredible person!
- Changa from H!

At 10:45 PM, Blogger ValGal said...

I'm thinking of you, Sarah, every single day.

At 9:54 PM, Anonymous Anonymous said...

You should be about done in Buffalo...cold down here huh?!
I've been thinking about you all week...yes, a total stranger...and wishing you all the best in the world. Perhaps you can get hubby to update your blog. I know it's yours and it's "personal" and would be weird to dictate it to someone else, but you've got people all over the world concerned and pulling for you.
Kick ass girl.

At 1:45 PM, Anonymous Anonymous said...

Darlin Sarah,
We've been thinking about you all week and are hoping so hard that the IL treatment went well and you are feeling okay.
Can't wait to see you! All our love, Nikki & Paul

At 5:13 PM, Anonymous Anonymous said...

Hi Sarah,
What strength. What grace. Your blog helps me keep it all in perspective. I'm rooting for you from far away. You can do this!

At 9:29 AM, Blogger dinah34 said...

My thoughts and prayers are with you Sarah.

At 7:05 PM, Anonymous Anonymous said...

Sarah, I am new to your blog and am in awe. Thank you so much for sharing your journey. You are such a spirited girl with the courage and strength most people do not have to muster in their lifetime.
I am sending you positive thoughts and hopes for pain free and happy days
Take care -Judy


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