Wednesday, September 21, 2011

Happy days

Well, I think I've finally turned the corner.  I've had 4 consecutive good days and today looks like it will be a good day 5.  I'm sleeping better, eating better, feeling better.  I still have regular bouts of nausea and my energy level sinks after lunch, just in time for a daily nap.  But my spirits are lifted and I feel more hopeful. It has been a rough 2 weeks at home.  I never expected the transition to be so difficult.  Yes, I knew I'd have physical limitations and serious food restrictions, but I hadn't anticipated feeling so poorly - and I really felt poorly.

It was Dr. A who helped with my turning the corner.  Actually, I think he pushed me around the corner!   When I saw him last week, he told me my blood counts were all very good and it was time to start living my life.  He lifted many of the restrictions, but told me not to eat sushi.  That works for me since I don't like sushi!  Armed with his blessing, I thought I was ready to move on.  Not so fast, though.  My head understood it was time, but my body was still full of fear and my focus was still on the nausea, indigestion, fatigue - how could I possibly move on??

Then Saturday arrived.  I checked my email and found a notice that a very good friend had tagged me in a few photos on Facebook.  Hmmm...how could that be?  I haven't seen her in a few months.  I checked out the photos and there she was, wearing an MMRF Race for the Research sweatshirt.   She and 2 family members were participating in the MMRF race in Boston, in my honor. Boy, did I cry!  I cried because I was so touched by her participating in this race for me; I cried because I wanted to be there with her; I cried because I was tired of feeling sick and really needed to turn the corner.

So I took my first step - Joe took me to a garden shop in the afternoon and we walked around, selecting mums, and then we drove around on that lovely fall day.  I felt so good - tired, for sure, but good.  Then on Sunday a friend took me, armed with my pedometer, for a walk at the beach on yet another perfect fall day.  I felt really good at the end of that trip.  And on Monday, I strapped on the pedometer and walked around the neighborhood near my home.  I clocked more steps that I had the previous day!

Also on Monday, I got back to work from my home office.  Though I managed only 2 hours before I crashed, I managed 2 hours.  And I will continue to work daily, even if just for a short time.

Lastly, I registered for a week-long retreat at the Kripalu Center.  The topic: Women Touched by Cancer.  I think it will be a good opportunity to talk with other women who have experienced cancer in their lives and it will provide me with the foundation to move forward with yoga.

When I return to Dana-Farber on Thursday, I think Dr. A will be quite pleased with my personal progress, as he has been with my physical progress :-)

Monday, September 12, 2011

Exercise

A fellow blogger asked me to post his article on the benefits of exercising during cancer treatments.  I guess I better go find my pedometer and sneakers!




Fitness Can Be A Lifeline For Cancer Survivors

Mental and physical stress is definitely two everyday factors in the life of someone who has been diagnosed with cancer. Though a cancer diagnosis of any kind (including common cancers such as breast cancer and even rare cancers like mesothelioma) can cause anxiety and stress, there is something that cancer survivors can do to help improve their day-to-day well being. Cancer patients who exercise consistently have been shown to have lower mortality rates and better quality of life than those patients who are inactive. It may not be the first thing on the mind of a survivor after they come home from a chemotherapy session, but maintaining a fitness routine is vital to living the best life possible.

An informative brochure put out by the Cancer Resource Center at the University of California - San Francisco states that clinical trials have revealed some significant gains for cancer patients who decide to keep exercising while they undergo cancer treatments. For example, the conductors of the clinical trials discovered that prostate cancer survivors who exercised not only reduced their risk of developing incontinence, but they also were able to diminish the side effects of treatments like radiation and hormone therapy. For women who had received a breast cancer diagnosis, those who exercised lowered their chances of dying by 64%. These results show the importance of exercise in the lives of those people who wish to do more than just sit by and wait for cancer to take their lives. Even with just a little exercise, the quality of life and the life expectancy can be greatly improved for cancer survivors.

Though exercise may not be the cure for cancer, society can no longer deny that it significantly helps those who may be going through the mental anguish of a cancer diagnosis or the physical pain of cancer treatments. In the aforementioned document, clinical scholars at the UC-San Francisco found that all that colon cancer survivors had to do was set aside 6 hours per week for walking at an average pace to achieve a “47% improvement in disease-free survival" compared with their inactive counterparts. This means that, for some cancer survivors, a little exercise has gone a long way in helping them to stay alive. Not only will developing a fitness plan help cancer patients ease their mental stress, but it can clearly help them with the physical fight as well. There is no doubt that exercise takes care of both the body and the mind, helping survivors achieve a well balanced life.

By: David Haas


 http://haasblaag.blogspot.com

Sunday, September 11, 2011

A week of extremes

It's been quite a few days since my last posting.  I'm sorry about that but it's been a rather rude and rough welcome home.  It's been a week of extremes:  extreme fatigue, extreme nausea, extreme aches and pains, and extreme aversion to anything that might possibly keep me hydrated.  For some reason, I thought I'd arrive home with a just few aches and pains and a little fatigue.  Wrong, wrong, wrong.  Really wrong.  I was far more physically comfortable in the hospital, thanks to nurse Brenda who hooked me up to a morphine drip with my very own little 'push here to feel better soon' button.  And at night when I was sleepless, Brenda would say, 'hold on, i'll be back.'  Then she'd appear with a syringe that would push a more-precious-than-gold medication directly into my IV line and soon I'd be in sweet, sweet slumberland.  And when I felt nauseous, she hand me a little tab to melt under my tongue.  It was the best.

Why did all the meds have to change when I came home and why don't these new meds work as effectively as the hospital meds???

Still, the doctors say I'm right on track.  Miserable, yes, but on track.

Tuesday, September 6, 2011

I'm home

I was discharged a day early and so I am now home sweet home.  It was good to sit outside for a little bit and to nap in my own comfy bed.  My Hickman line was removed (ouch!) before I left BWH and my port was accessed, leaving me with a small needle protruding from my left chest.

I wish I could feel exuberant about leaving the hospital but I have so little energy.  I am exhausted.  The nausea has become a part of everyday life. I am tremendously achy due to the neupogen shots.  I feel physically and emotionally worn down.These past weeks were difficult and challenging.

But now the challenge, this challenge, is over.  There will be more challenges to come, no doubt. After a few days of rest, I'll be ready for whatever is put in my path.

I know it's only 7:30 at night, but I am heading to bed.  Good night to all!

Sunday, September 4, 2011

Razor blades

I mentioned to Joe yesterday that it's hard to believe I had my stem cell transplant just a few days ago. "No," he said, "you had it almost 2 weeks ago." "Really?" "Really."  And so goes the conversation.  "Well what have I been doing these 2 weeks??  I can't remember."  "You've been recovering, doing all the right things.  Look how great you feel today."  "I know, but what have I been doing??  I don't remember what I've been doing."  "Well, you've updated your blog, you've made some jewelry, you've read but just a little, you've walked around the unit.  How's that for doing?"  In my mind, not much.  I could have done all of that stuff in a morning.  What about the other 13 and a half days???  "You don't remember the pain?"  Ahhh...the lightbulb went off.   Now I remember what I was doing - I was accepting any and all medication offered.  I was in terrific pain most of the time and then I was heavily medicated.  Medicated naps were my activity of choice!

Yeah, my throat.  I  remember the Transplant Nurse telling me to suck on a lot of ice chips before, during and after the Melphalan - and I did.  She said that might protect my throat and esophagus during the upcoming weeks.  I sucked more ice chips that I can believe and I really don't ever want to suck an ice chip again.  However, despite my ice chip obedience, my throat and esophagus were in much pain when talking and swallowing.  My throat hurt so much that I had to whisper in my newly found low voice.  Sometimes it hurt so much I was unable to enunciate and I sounded like a husky-voiced mumbler. And because I was heavily medicated, I was falling asleep during almost all attempts to converse.

My esophagus was even worse than my throat.  I think I may have mentioned in an earlier blog that without the ice chips, it might feel like I was swallowing razor blades.  Despite the ice chips, I felt like I had a wad of blades that went into a frenzy whenever I tried to swallow.  Edward Scissorhands comes to mind.  Yes, I was in a lot of pain.  No wonder I wouldn't remember.  Those were dark days.

Late Friday and Saturday I began to pull out of the cycle of pain and meds.  Today I feel very little pain and I've been weaned from Dilaudid (I even had my own 'push when it hurts' Dilaudid button, as well as a continuous low stream).  I'm still napping quite a bit but it's not a medication-induced sleep.  I'm not eating much - maybe 600 calories a day.  I thought I'd lose 20 lbs during this ordeal, but no, I've actually gained from the continuous flow of fluids into me.  One of the fluids has been potassium.  Now that I am fairly lucid, I'll need to ask the doc why I needed such a high intake of potassium.

So that's about it from here.  Oh - one more thing - I celebrated birthday #52 last weekend!  Joe and Joseph smuggled in a frozen Sara Lee Chocolate Cake.  Mmmmm.  It was the best cake I've ever tasted! I do recall, though,  that the guys had one piece each and tossed the remainder in the trash.  Very unlike them.  My medicated opinion strikes again!

One more item:  Joseph left for his sophomore year at college.  I missed that completely.  Joseph, I hope you got there without too much event, have everything you need for your new room, picked up your books at Uncle's, and will stay focused on the end goal - becoming a happy, successful, and educated young man.  I may have given you this talk during my medicated state, but even if I did, it's worth repeating again...and again, and again... :-)

And so I'll close here for now.  I have 3 more days here in my little bubble room at BWH.  I pray that all goes well over these days and that there are no complications in my discharge.  The nurses have given me outstanding care and I will miss them.  But I am so looking forward to being home, seeing my cats who have been in kitty boot camp this week (no outside for them until I am completely recovered), looking out the window to see my flowers that Mom has been tending, and resting in my own bed.  When challenged by cancer, one comes to appreciate even the smallest things in life.