We have lost many this year to MM and other cancers or health issues. Having conversations with my many friends, both personally and via the net, one thing comes through loud and clear, getting through milestones and anniversaries is very hard. With the holidays being a particularly difficult time, I thought perhaps we could express it out loud in the hopes that others will find some solace in the camaraderie. Continue Reading »
“What you spend years building may be destroyed overnight. Build anyway.”
It surely has been a long time since I have posted! Some of us have stayed in contact on FaceBook in one of the MM groups and so I haven’t felt overly disconnected, but disconnected nonetheless. What can I say, but we are doing extremely well. The kids are pretty grown up, self sufficient, enjoying their lives. Dave and I are back to the grind so to speak, but with interesting changes. We continue to be happier than we have been in our three plus decades together. Dave continues to work entirely too much – that didn’t change. What did change is he enjoys it more. Who’s to say he wouldn’t have anyway being more “mature” at this point. Or maybe it’s the company, his colleagues, the work itself? I don’t know, but it’s just nicer, even if I wish he could manage it a little better. What has changed is that he can truly leave it and enjoy our time together or visits from friends and family. He doesn’t have that distracted “I’m thinking” look he used to have no matter what we were doing. It used to annoy the hell out of me. Continue Reading »
Jun 13th, 2013 by Lori Puente
“Research is creating new knowledge.” – Neil Armstrong, Astronaut
Dr. Usmani, a researching physcian at UAMS in Little Rock, Arkansas, in the Myeloma Institute did a brief overview of the retrospective comparative study he was presenting at the conference on Total Therapy 3a and 3b regarding the newly diagnosed High Risk Multiple Myeloma patients. Continue Reading »
“A piece of me goes with them.” – Lori Puente
We lost another giant soul in Myelomaville last week (Hanna – Margaret’s heartfelt tribute). Some of us knew it was coming, but it still hits you hard. Every time this happens I feel sadness and meloncholy. Each time someone relapses and goes back for more chemo, more “new” drugs, my shoulders sag just a little.
“Attitude is a little thing that makes a big difference.” Winston Churchill
This continues to be a controversial topic. There are some scientific studies and research that have been going on forever on this. It’s a difficult test to run and quantify accurately in a way that is definitive. I tend to be cautious when chatting with patients and caregivers about this because I would never, ever want them to feel in anyway deficient. That somehow if they just prayed more, believed more, were more positive they would have a desirable response to their treatment. It totally defeats the whole idea of the concept if it makes someone feel inadequate. Continue Reading »
“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 »
“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 »
“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.
“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.
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.
Thank you Mr. Schorr for your continued and tireless work to keep us updated with the viewpoints of researchers and specialists treating this disease.
“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”.
“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 »
“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 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 »
“…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 »