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fanciful“There are things we don’t want to happen but have to accept, things we don’t want to know but have to learn, and people we can’t live without but have to let go.” – Unknown

First of all, we had another stellar report from our recent post maintenance therapy check up in Arkansas. David continues to do well and there are no concerns. I’m not happy with his T Cell lab reports, so once again made my pitch for 20 therapeutic HBO treatments that the clinic recommended when we went there before we started treatment. He is more open to it after seeing those numbers and I will call soon to get data in a new unit of time on cost and so on. Continue Reading »

Myeloma Holiday?

Backyard

“Maybe Lori will take a break from her Myeloma Holiday and chime in.” – H.O.

Indeed! I would have never thought there could be such a thing as a Myeloma Holiday. Do you ever get away from it? Well, for some of us, yes. For many, sadly, no. Thankfully Dave and I fall into the yes category. It feels warm and fuzzy. Then I’m reminded of those who aren’t in that place. Every time I hear someone isn’t doing well, relapsed, passed away, I fight the guilt I feel that I can’t have all of you in my camp. I’m also mindful of the fact that it may or may not have a limited timeframe for us. So we just take what we have now and embrace it. Dave is not connected to Myelomaville the way I am so he is just living his life and enjoying himself, which is the way I want it for him. I’m more invested in a different way so I have to find outlets for how I’m feeling through others, mostly you, online, email or phone calls. Dave’s outlook on how he is and how he feels is important to us for his well being. So I don’t burden him with the less pleasant side of what happens in those darkened ally ways. Continue Reading »

Treatment Ends!

“What part soever you take upon you, play that as well as you can and make the best of it.”  ― Thomas More

Dave and I are still basking in our recent check up in Arkansas, meeting with our doctor last Thursday. In a nut shell, Dave’s treatment has successfully ended. His scans, tests, labs, etc., are all good. Better than good in some cases and could be better in others, but not bad.

So indulge me as I bring you up to speed. Dave’s three year maintenance is up early December 2012. He missed his six month check up in May due to yet another doctor leaving the Myeloma Institute. That was our 3rd. Between Dave’s busy work schedule and MIRT’s declining admin personnel, Dave didn’t reschedule his “six month check up” until the end of October! The real push was our local oncology group telling him his prescriptions were run out from Arkansas and me jumping up and down like a three year old having a tantrum until I was exhausted and exasperated. Sometimes it really stinks to be a caregiver of a non-compliant adult! Anyway… Continue Reading »

Myeloma Cure Panel broadcast

We had a very informative Cure Panel discussion on myeloma on Blogtalkradio with Dr. Parameswaran Hari as myeloma expert on 25th September at 4:30 pm EST.  The show was co-hosted by Gary Petersen and had over 40 live callers.

On the panel we had Pat Killingsworth, Matt Goldsman, Keith Virgin, and Lori Puente. Dr. Parameswaran Hari meticulously answered and discussed with the panelists on the topic of disease progression. The AHA moment for all who were listening was Dr. Hari’s target of 40% cure!

Dr. Hari answered questions from listeners too in the question answer session.

There is some excellent discussion and information on MGUS and Smoldering and the new trials on treating Smouldering before it develops further which is as per all things Myeloma, in heated debate. I learned a lot of new things in this presentation. My question on the high risk factors wasn’t quite duplicated. Bottom line is this, many of the clinical high risk factors used in the past, and still being used today, are not considered problematic for the larger researching facilities and certainly not Arkansas. So if you fall into this category after staging with a local oncologist, I strongly urge you to revisit your consultation list and include one of the bigger facilities for your treatment. They will have a better shot at getting you into a sustained response.

Monterey Excursion

Monterey’s Lone Cypress Tree

“The journey not the arrival matters.” –  T.S. Eliot

Dave and I went on a road trip to Monterey, CA.

So for weeks we were trying to get away to just DRIVE in the new/used “CaliCar” we recently got. Top down, destination known or unknown, just hit the road jack! Weekend after weekend was obligated to one wonderful thing or another and finally we made a break for the coast. It wasn’t about where we were going or what we would do once we got there, it was truly just about driving our cool little convertible with the top down and the music blaring.

We had a ball. It was one overnight and back again. We spent some time on Canary Row and dinner at Schooners at the Monterey Plaza Hotel. Continue Reading »

Andrew Schorr catches up with Dr. Bart Barlogie in Barcelona at a conference to ask the question, if emphasis is being pushed to make Myeloma a chronic disease is cure still a priority?

An excellent interview that of course has some of the scientific complexities that make it difficult for the average layperson to understand, but I think it is worth your time and effort to give it a watch.

I think the thing that always strikes me in these sorts of presentations is coming to terms with the fact that multiple myeloma still has a median age decades older than many of us. Or at least it sure seems that way. When you think of it in these terms, it is heartening that so many researchers and pharmas are working on this obscure, orphan disease that mostly strikes the elderly. Those of us who are not elderly or even close understandably can become frustrated, but we should take heart. There could be little to know interest in this disease as is the fate of so many rare and orphan diseases.

View here

Thank you Mr. Schorr for your continued and tireless work to keep us updated with the viewpoints of researchers and specialists treating this disease.

MIA, AWOL, APB!!!!

“Preaching for life changes requires far less information and more application. Less explanation and more inspiration.” — Andy Stanley

MIA: Missing in Action

AWOL: Absent With Out Leave

APB: All Points Bulletin

I didn’t intend in any way shape or form to be absent from you for so long! I have much to catch up on and write about. I’m coming up for air and will be getting it out to you daily probably for the next week or so.

Suffice to say that I have been galavanting around with old friends, Dave, a lengthy visit from his parents (which brought more galavanting), working out a lot with my trainer Lou, dealing with our Yarn Shoppe move (everything is in storage at the moment until the new location is secured), etc., etc.

Hope you are all hanging in there and that you still “love me”. 🙂

Lori

 

“The willow is my favorite tree. I grew up near one. It’s the most flexible tree in nature and nothing can break it – no wind, no elements, it can bend and withstand anything.” – Pink

“Let no one think that flexibility and a predisposition to compromise is a sign of weakness or a sell-out.” – Paul Kagame

The two things that helped me through this ordeal (and other challenges in my life) is flexibility and adjusting my point of view.

Karen touched on this in her insightful comment on my last post (Sunrise – Sunset).

I’ve had the view point thing down for some time, but flexibility became my new best friend when dealing with Dave and all his treatment, how he was feeling hour by hour. Continue Reading »

Sunrise – Sunset

Sunrise? Sunset?

“Superman’s not brave. You can’t be brave if you’re indestructible. It’s every day people, like you and me, that are brave knowing we could easily be defeated but still continue forward.” – Unknown

In my last post regarding Dave’s exercise update I mentioned that our trainer is encouraging Dave to revitalize and renew his love for coaching pitching. Dave’s hesitation and his concerns. Continue Reading »

“I have to exercise in the morning before my brain figures out what I’m doing.”  – Marsha Doble

I thought you might like an update on Dave’s progress.

As the week wore on heading to his first day, his confidence began to wane. My little humorous quips were met with distress and annoyance. I toned it down as I could see he had some emotional difficulties going on. When he finally said to me that he couldn’t afford to get hurt or be so fatigued that he couldn’t do his job. I sighed and said, “Of course. You need to tell Luis of your concerns Dave. It’s important that you tell him.” He did and Luis completely understood and worked him accordingly. When I went to pick him up he was balancing himself as he was doing a lunge. Something he and I used to do without a thought had become one where much concentration was needed. Continue Reading »

“The greatest discovery of the 20th Century is that our attitude of mind determines our quality of life, not circumstances.” – William James

My interview is up over at CureTalk.

 

“…I figured I had been dealt a terrible hand and I had two choices: fight, or roll over and die. It was a pretty simple decision.” – Nick 

Nick and Dave were diagnosed a few months apart and both of us independently through our research and even different thought processes decided to treat in Arkansas. We had different doctors, similar presentations in that they are both “low risk”, and kept missing each other in the treatment process, but we met later on and it has been wonderful for me as well as for Dave. Our children were grown and Nick’s were little tikes. We had different family issues, but we all plowed through managing to get it done 2,200 miles from home.

Anyway, Nick continues to be my “go to” guy when someone asks me technical questions about treatment, drugs, and myeloma.

He has completed an interview with a healthcare website called CureTalk. (interview link here)

Do yourself a favor and give it a read. He is a no nonsense, take no prisoners kind of guy that I have a personal and profound respect for, as well as his beautiful, wonderful wife and caregiver.

 

“Communication is a continual balancing act, juggling the conflicting needs for intimacy and independence. To survive in the world, we have to act in concert with others, but to survive as ourselves, rather than simply as cogs in a wheel, we have to act alone.” – Deborah Tannen

Several recent conversations and postings with caregivers and cancer patients about communicating through their ordeal and it’s difficulties, responsibilities, overwhelm and some other unpleasant stresses and emotions have prompted me to see if I can address some of the finer points. I hope they don’t mind that sometimes our private or public exchanges give me ideas of topics to cover. And when they seem to come up repeatedly close together it seems as though a neon sign has been flashing and I’ve been just whizzing past it! 🙂 Continue Reading »

“Every day is a new chance to choose. Choose to change your perspective. Choose to flip the switch in your mind. Turn on the light and stop fretting about with insecurity and doubt. Choose to do your work and be free of distraction. Choose to see the best in someone, or choose to bring out the worst in them.” — Ishita Gupta

Continue Reading »

“Lack of activity destroys the good condition of every human being, while movement and methodical physical exercise save it and preserve it.”  – Plato

For those of you who made a wish for Dave on my behalf, thank you!

Continue Reading »

“Drag your thoughts away from your troubles… by the ears, by the heels, or any other way you can manage it.”  – Mark Twain

(Kind of neat I found a quote on this from Mark Twain after my escapades in Tahoe with him!)

As caregivers, and I’m sure as patients as well, when we hear cancer and for us, Multiple Myeloma, the worry shoots off the richter scale and stays there for a long time as we try to digest what it all means. Quite frankly, it can make us even sicker. Anxiety, Panic, “what will I do without them?”, our children, our home, our livelihood, our insurance, our savings, OUR LIFE! All of these things and I’m sure much more, come crashing in on us like the perverbal runaway freight train! Continue Reading »

Emerald Bay, Lake Tahoe, California

“A true friend is someone who thinks that you are a good egg even though he knows that you are slightly cracked.” – Bernard Meltzer

When we moved to California from Bangor, Maine I was in the 2nd grade. The weather here was conducive to wonderful long hot summers with loads of lakes and rivers to swim, boat, ski, fish, camp. My father took took advantage of all of it as inexpensive family fun. I didn’t realize at the time how special it was and that not all parents availed themselves of the time with their kids to do these things. One of most fun of course, was snow skiing in beautiful Lake Tahoe, where you have an abundance of top rated ski resorts. Continue Reading »

Family & Friends

Me and Cuz Jean

“But friendship is the breathing rose, with sweets in every fold.” – Oliver Wendell Holmes

My 1st cousin, once removed… meaning she and my father were first cousins and their fathers were brothers. The Hudson Boys, there were six of them. Uncle Herman, Jean’s father, was my father’s favorite Uncle. Her mother Corine, was about as sweet as they come. I met them for the first time when I was 15 years old and they told me how I had slept in the drawer of one of their dressers as a baby. Uncle Herman loved to golf and was quite good, and Aunt Corine sang, played the piano and was an amazing cook. She went to HS with Dinah Shore and shared a love for singing. Continue Reading »

“Death leaves a heartache no one can heal, love leaves a memory no one can steal.”  ― a headstone in Ireland

This past week we lost two in Myelomaville. Actually we lost more, as I read on FB, but these two many of us had come to know through their blog musings. Sean Tiernan and Paula Kilgallon. Both were showing signs of failing and then very quickly, they left us. Margaret wrote a wonderful piece on Paula.

Continue Reading »

MishMash – 9

“Being happy doesn’t mean that everything is perfect. It means that you’ve decided to look beyond the imperfections.” – Unknown

Wow! Once again I am absent from blogging for too long! But… rest assured I have been busy, good busy, with both my life and with things in Myelomaville. So much to catch you up on. Nothing earth shattering, but just good stuff.

I have been working with WegoHealth on a video project with Jack Aiello (and we had hoped David Emerson of PeopleBeatingCancer.org, but due to technical difficulties he wasn’t able to join us). Anyway, I’ll keep you posted on it and when it goes live, but it was a wonderful series of “conversations” between Jack and I on Multiple Myeloma. I have never met Jack, but have resolved after this, to do so. He lives in the Bay Area, so it’s really not a obstacle ridden goal! So for about a month I was up early on Friday mornings all spiffed up to spend an hour or two on this project. I’m hopeful about it’s final presentation. You can “Like” WegoHealth on FB and also join their community. Continue Reading »

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