[LibbyC]

Ticking things off the bucket list

by LibbyC on Fri Feb 28, 2014 8:56 am

I haven't been on the Beacon for a while, I have been ticking a major to do off my bucket list. I haven't quite ticked it off (it is a work in progress & hopefully it will be for a long time), it is not how I wanted to present it but things do change when you are diagnosed with multiple myeloma.

One of the things on my bucket list is to compile my gluten free recipes & knowledge & to be able to share it. This morning Decadent Alternatives website went live ( http://www.decalt.com.au/ ) Some of the photos (discarded) I took were so blurry due to the dex shakes I went & bought a remote cable for the camera.

Anyone else slowly ticking things off their bucket list?

All the best for your journey,
Libby

[NStewart]

Re: Ticking things off the bucket list

by NStewart on Fri Feb 28, 2014 2:41 pm

LibbyC-
Congratulations on your website with gluten free recipes! I'm going to forward it to my former colleagues who treat people with pelvic floor dysfunctions. Many of the people who come with diagnoses of pelvic pain, bowel problems, etc are on gluten free diets and find it hard to do.

I haven't made what I call a bucket list, but I am doing something that I've wanted to do for years this coming May. After presenting at a conference in the UK and then teaching a continuing ed course there, I am traveling to Prague for a week and to Dubrovnik for a week. My sister will be joining me. Both of us have wanted to go to Eastern Europe for several years so this is a trip that has been in our heads for years. Now, because of my going to the UK for some work, we decided to take the opportunity to extend the trip to Eastern Europe.

One of the things that I am most grateful for is that I feel well enough to make these kinds of travel plans and follow through on them. The last several years I didn't feel that I could make plans more than a month in advance.

So, here's to doing the things that we have wanted to do and continue with our journeys with Myeloma as best we can.

Nancy in Phila

[Nancy Shamanna]

Re: Ticking things off the bucket list

by Nancy Shamanna on Fri Feb 28, 2014 4:01 pm

Libby, those recipes look so mouth watering ... is this a cook book that you have developed? I am glad to know that in addition to everything else that you are involved with, you had the time to make this professional presentation. I am not 'gluten free' in my diet, but maybe I should try your recipes too.

Nancy, I am so glad you are planning a trip to Eastern Europe and feel well enough to plan beyond a month at a time too! For quite a while I was nervous about planning anything beyond a three month time span, since my check ups were every three months after I finished the chemotherapy treatments. But after this amount of time, usually I can put my worries to the back of my mind and live quite a normal life!

I am gradually checking things off my 'bucket list' too! Just being involved with a medical support group for myeloma is interesting to me, and also I have my part time work and hobbies too. I am interested in learning more science, and this whole experience with myeloma has focussed my attention on that. I now enjoy writing also.

[Multibilly]

Re: Ticking things off the bucket list

by Multibilly on Fri Feb 28, 2014 5:07 pm

Hey Libby,

I was just curious, why you are doing a gluten-free diet?

My bucket list is just travel, travel, travel...which I've been pretty good at doing so far.

[darnold]

Re: Ticking things off the bucket list

by darnold on Fri Feb 28, 2014 6:25 pm

Hi Libby. Thanks for sharing the recipes. One of my staff was just diagnosed with Celiac's, and I'm going to share your site with him.

Personally I don't like the term "bucket list" because of what it connotes, but I do have a list. Some of the things are annual -- getting to the beach and going to the Maryland Renaissance Faire with my daughter. Some require planning and travel. Last year, I took a tour of the Tournament of Roses parade, which included a tour of LA, a walk along the walkway of the stars -- did anyone know that both Godzilla and Stan Lee have stars? --a behind the scenes look at floats being assembled, and seats to the parade. (Unfortunately, it also include an incredibly rude woman who coughed all over everyone on the bus, leaving me with a fast moving bronchial infection so bad that I was too sick to fly home, but that's a story for another day.) This year's plans include a trip to Zion and Bryce Canyon National Parks with my sister and daughter. We're going the end of April, and I am psyched!!

Nancy, enjoy both the UK and Eastern Europe!!

MultiBilly, where have you been traveling to?

Dana

[LibbyC]

Re: Ticking things off the bucket list

by LibbyC on Fri Feb 28, 2014 8:04 pm

Hi Nancy(s),
I am glad that we are all finding our way to do things that we enjoy. Sometimes I feel like a rabbit that a fox has chased down a rabbit hole, I am so cautious when I first go out, any sound or disturbance I am scooting back inside to safety. It will get easier over time. I won't be doing any big trips, unless it is in the school holidays .

Hi Multibilly,
Nah, I'm not on a gluten free diet - I just develop good recipes . Ones that will put a smile on your dial. I don't have the gene to become a coeliac, nor does anyone else in my family. I will make a recipe & use wheat flour then convert it to a gluten free one - the whole family then gets to taste & comment. The best thing they can say is "Can't tell which is which".

I started making recipes ~14 years ago when a friends child was diagnosed with anaphylactic allergies (wheat, dairy, eggs, nuts & soy). Currently my recipes are all hand written in books (some are on the computer - when we used to manufacture them) & the knowledge that goes with that in my head. So getting that written down was on my to do list (before I was diagnosed). After diagnosis it was always nagging at me - If I die that knowledge is lost - some may find it helpful, some may not - but at least now some of that knowledge will be accessible.


Hi Dana,
I think we were diagnosed around the same time. I was 15th April 2009 - a date to remember (it was a bit of a blur at the time it may have been the 16th). I agree with you about the term "Bucket List" - but before I was diagnosed it seemed acceptable.....Your trips sound great, it's a great time when my sister & I catch up. She lives ~1300 kms away, we sort of keep in touch daily by playing words with friends.

All the best,
Libby

[darnold]

Re: Ticking things off the bucket list

by darnold on Sun Mar 09, 2014 2:37 pm

Hi Libby. We were diagnosed around the same time: my diagnosis was May 1, 2009, so we both have 5-year anniversaries coming up. (In retrospect, I had active myeloma at least a year before my diagnosis but I was busy with work and not listening to my body. Not a mistake I will make again.)

Like you, my sister lives a distance. I live on the East cost and she lives in California. We don't keep up via Words, though. She plays with my daughter but is afraid to play with me! I keep up with other family members via Words. My family is scattered all across the country, and Words and texting help us keep caught up quickly. My dad refuses to pay for texting so I talk to him or my mom every day.

Funny story about travel with my sister: we went to Sequoia and Yosemite several years ago. She thought it would be fun to stay in a tent cabin in Yosemite. Not only was it so cold that we slept under 8 wool blankets, but during the night the door to our cabin starting rattling. We had put all food in a locker, but I had kept my cherry flavored chapstick. We were convinced for a few seconds that it was a bear looking for my chapstick! It turned out it was someone from the tent cabin next door who had made a night-time bathroom call and came back to the wrong cabin. She made me promise that we are not staying in a tent cabin in Zion or Bryce Canyon....no argument from me!!

Dana

[kjpoppit]

Re: Ticking things off the bucket list

by kjpoppit on Sat Mar 15, 2014 7:55 pm

Hi Libby and everyone else.

I don't do gluten free but may have some friends who would like it and pass it on. It's admirable the work you are putting into this.

As for the term bucket list. I don't really have any issues with it. I like to keep things light hearted and have fun. My sister and I only have a verbal list at this point. It's mostly travel and places we want to eat and spending time with our family. Neither of us have the money to do this but keep hoping something good will happen and make our dreams come true. One day I will quit work and cash in my retirement. My health will decide that.

My sister has stage 4 metastasized breast cancer. Her time is unknown and treatment is continuous but she gets a few breaks and during those breaks she wants to take care of me. So, this bucket list needs to happen sooner than later because we want to share it together. I have high risk myeloma so I am not real sure about my time left but I am hoping to do better than the statistics. Auto stem cell soon and then an allo.

We just have to each not be in treatment at the same time and wrangle the money together. Our big trips are Germany and Italy. Otherwise it's as simple as drive across the USA and meet new people and see new things. She lives in Wyoming and I am in Alaska. All of my family except my husband and kids is elsewhere. Really missing my siblings and parents.

(PS - She wants to skydive, kinda stereotypical. I have no desire to. I will just watch. It's just not important to me. Anyone else have skydiving on their list? )

[LibbyC]

Re: Ticking things off the bucket list

by LibbyC on Tue Mar 18, 2014 7:17 pm

Hi Kim,

I am sorry to hear about your sister. I don't want to sky dive or bungee jump - can you imagine the spine, snap, snap, snap - I suppose I could be back to my previous height for a nano second. I hope you get to travel to Europe with your sister. It would be lovely for both of you.

Next on my bucket list is to renovate my kitchen (oops, I should say our family's kitchen) then after that I would love to go skiing in Aspen again (loved Aspen highlands). I am sure if my arthritic mum can ski at 74 I reckon I can at 52 (gives me a couple of years to work on my fitness). Maybe I won't go as fast as I normally do.

In the myeloma clinic where I had my allo they are now offering them earlier in the treatment regimen. I asked my specialist (no paper yet) and she said that they get a better use out of the chemical treatments after a patient has an allo.

All the best,
Libby