A Caregiver's Inspirational Journey Through Cancer
Jul 22nd, 2011 by Lori Puente
Where do I start?
I will leave this up for awhile, so look for newer posts below…
I have a stats program on my blog that tells me what folks are reading when they stop by. I have noticed in the last month that I probably have a lot of new readers. I’m sorry that you have MM, but I’m glad that you have found me. Continue Reading »
Jan 27th, 2012 by Lori Puente
Thanks David at Workingwithme.
Jan 26th, 2012 by Lori Puente
Lone Tree, Lake Oroville, 2007
I have no idea where this quote came from. I’m sure I grabbed it from somewhere on the web, a friend or an article. I saved it months ago to write a post about it and failed to save the reference, for which I apologize.
But it illustrates so well an issue we don’t always talk about.
I have an online friend in England who wrote a beautiful and painful post about being in remission, being depressed and feeling guilty. She talked about how alone she felt and that her friends and family didn’t understand why she wasn’t “happy”. Why she wasn’t “moving on.” She had a young daughter and was a single mom, and quite frankly, she was trying to put some semblance of a life back together, but she didn’t know where to start. Everything but her daughter had been ripped away. It garnered a tremendous response of folks who totally understood where she was coming from and were relieved that someone had dared to articulate something they too were struggling with. She and I corresponded regularly for sometime and I’m happy to report that she found work helping others in an official capacity with cancer, and she is thriving. But it was after some really dark days.
It’s almost like a substance abuse situation where we have to hit emotional bottom and then pick ourselves up by the boot straps and say “ENOUGH!” That is, for those of us who survive the illness and the treatment. It comes on the heels of what I have talked about with regards to learning how to LIVE with cancer.
As a husband and wife, struggling to be on the same page on that trip to the bottom and hopefully back again, it should not to be dismissed lightly. I remember early on, and I have alluded to this before, that I was not kind to Dave in the very beginning. I had my lightbulb moment about it and things settled down after that. I realized that I was so afraid and I needed him – my man, by my side, holding MY HAND and telling me it was going to all be OK. I have learned over the years that when I have a very strong reaction like that, its best to look inward and try to find what is really going on. It’s generally not someone or something external that is causing me to feel a particular way. Oh it is contributing, or the impetus for what is happening, but it is generally not the culprit.
For many of us with Multiple Myeloma, we don’t feel as healthy as before. We have neuropathy, we are perhaps still taking some oral chemotherapy drugs, we’re tired, immunosuppressed, and then as with any cancer, there is the six month check up! A constant reminder that we have cancer! We’re damaged goods and we don’t like it. We may have restrictions. We might have had to retire early or go on disability. And it generally isn’t affecting just the patient. It’s affecting the marriage and/or the family unit in a big way.
One friend of mine whose husband got MM had to retire early and go on disability. Then she also had to retire early and suddenly, and begin the arduous task of taking care of him over the next 3 years. He recently passed away and so now she has to try and recreate a life after 3 years of myeloma without him, a widow. She was happy. She was working. She had friends. But talking with her recently she shared with me that the past 3 years with him were some of the happiest they ever had. Stuck in a little apartment far from home without all the trappings and stresses of their life, they were together, doing the simplest of things, they had everything they needed, and they were happy.
That launched us into that strange other worldly place that we both understood. I commented that Dave and I have never been happier as we are now after this experience. Oh we still quip at one another here and there and I can get annoyed, but it’s all so different. Our fuses are long and endless, and our blow ups are short and often end in laughter. We just don’t care so much about so many things that used to be the end all and be all all of our life. I share about in my talks, that Dave was telling folks he was “taking his life back!” And how I reminded him, “We don’t have to take it ALL back!”
Remission is indeed a strange little no man’s land. Some folks are saying Cancer Free now because of the historic connection of remission alluding to the fact that it could come back. Whatever gets you through it. Point is, if you are there and feeling strange, like you should be acting a particular way and you’re not… It’s OK. You’ll get there. Just keep moving forward, no matter how small.
Another friend of mine’s son recently wrecked his car. He was hit by another car and his cute little car was “totaled”. He was upset and angry. As you know, an old car that runs, is worth more than an old car that is “totaled” by the insurance company. Anyway, his mother said, “You can visit Pity Party, but you can’t live there!” Boy did that make me laugh out loud. It’s so true. We can visit, but really, we can’t stay. So pack up your bags friend, and get ready to bug out. 
Create a new life, with new friends, maybe in a new place. Do what brings you pleasure.
Jan 23rd, 2012 by Lori Puente
“When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us.” ― Helen KellerIn light of recent dialog on how to live with cancer, I thought I would share with you how much the simplest of pleasures can fortify my days. Left is a photo I took this morning of my backyard in N. CA. We have gotten some much needed rain, which means the Sierras are getting snow, which means we’ll have water in the summer to irrigate crops as most of our water comes from snow melt run off. Continue Reading »
Jan 21st, 2012 by Lori Puente
“Before I even knew what we would do, what the treatment would be, or it’s outcome, I had to get Dave’s head in the game!” – Lori PuenteThere is a wonderful article over at The Myeloma Beacon, by Kevin Jones where he talks about the battle between him and his MM. It has garnered a great deal of discussion and comments. It was sent around also through the Myeloma ListServ (managed by Beth Morgan). And that resulted in some more wonderful back and forth amongst patients with MM that was refreshing and enlightening. Continue Reading »
Jan 19th, 2012 by Lori Puente
Lone Tree, Lake Oroville, 2007
Author Unknown
I remember the first time I saw this in Arkansas I dug around in my purse for some paper and wrote it down. Every once in awhile I run across it again and so if you have never seen it, here you go. If you have, it is a nice reminder.
Jan 13th, 2012 by Lori Puente
“If we knew what it was we were doing, it would not be called research, would it?” - Albert EinsteinRecently there was a study about treating those MM patients that were historically in the “wait and see” mode. As you can imagine folks were a bit rattled (an understatement). Kind of like how we feel when someone says SCT shows better lifespan, or Tandem wins, or delayed SCT shows same results, etc. We can get all whigged out about whatever choice we have made. (Which BTW, I recommend not doing that. Don’t second guess, don’t be dismayed. You made the right decision for you at the time bringing in all the factors that were important to you with the information then.)
Ok. So The Myeloma Beacon being ever vigilant and having a continuing uncanny perception on how their readership might be feeling with certain news, did an article today with a Dr. Ola Landgren, a MM researcher at NIH that specializes in this particular group of MM patient presentation.
A recent commenter on my blog mentioned that he sees Dr. Landgren. I had not heard of him, but then we are not MGUS or Smoldering, so I didn’t beat myself up too much about it. It was kind of cool to see his name so quickly after this mention. Between him studying those not yet symptomatic and Dr. Bart Barlogie (et al) studying those who are demonstrating high resistance to drugs, both looking for the genetic markers, I think we got it covered!
Margaret’s response to the Beacon article here! I gladly defer to her on this issue as she has been blogging as an MM patient in this category for a very long time.
Jan 13th, 2012 by Lori Puente
“It’s not about waiting for the storm to pass. It’s about learning to dance in the rain!” – UnknownWe have a very active FB MM Support Group (check my resources page if you haven’t joined yet). So far with over 400 members we are very thoughtful, kind and supportive toward one another, regardless of our treatment choices, knowledge base, or MM presentation. Anyway hat tip to Cindy who put this little nugget up there. Continue Reading »
Jan 12th, 2012 by Lori Puente
Schacht SideKick Wheel
One of the things that happened for me when I returned from Florida over the holidays was to get my new spinning wheel out of “lay away”.
During my class I took home 3 different wheels to spin on. This one was the one I was hoping to love and took it home last. I was happy that I did love it. It collapses (it is folded up here in the photo to your left) and only weighs 13 pounds with a carrying strap to throw it over your shoulder. Continue Reading »
Jan 11th, 2012 by Lori Puente
“All doctors have proven to me is that they are good enough students to get through med school.” – Lori PuenteAnother favorite of mine that my friend and former mentor used to say to me was, “Remember, they are ‘practicing’ medicine.”
I don’t mean to be a doctor basher. I have many friends who are doctors and many doctors I have met in my life’s journey that I truly respect and hold in high regard. But like almost any profession, there are fewer than I would expect.
Dec 31st, 2011 by Lori Puente
It’s hard to believe yet another year has gone by. It has been a good year for us, personally. Not so true for others and then some have done exceedingly well. It is a time of reflection for me. Something that I do throughout the year, but somehow the New Year’s festivities forces me to focus on it a tad bit more than I might otherwise.
Dec 26th, 2011 by Lori Puente
This video hit the MM community as I was traveling for a long awaited cruise celebrating 30 years of marriage with my husband Dave, who has MM. It has taken me awhile to finally get it up here for those of you that might have missed all the hullabaloo. But if you want to see the follow up on this, there is no place better than the illustrious, long time smoldering myeloma patient who lives in Italy, drum roll… Margaret (of course!). Read here!
But first, watch this. What struck me as THE MOST IMPORTANT feature in this, is not whether years from now it will pan out for us or not, but the paradigm shift of a researcher opting to do it as Open Source. THIS IS HUGE! If we can get more of our researchers opting to do this we might make progress much faster. MMRF founder, Kathy Guitsi, was instrumental in the formation of her work to demand sharing of tissue from ALL participating and making it impossible for them to say no. Slowly, people are making a difference and breaking down the old barriers that kept progress slow and arduous. Keeping everyone’s eye on the ultimate prize, which is the answer to the puzzle, and the saving of lives.
Just click on the Ted Talk photo in the event you don’t see a play button. It’s there.
I think… I’m just about caught up now on important posts. Thank you for your gracious patience as I was off galavanting doing other things and preparing for the holidays!
Dec 26th, 2011 by Lori Puente
“Elderly patients with multiple myeloma strive for upfront therapy that will extend their lives,” said Karen Ferrante, M.D., Chief Medical Officer, Millennium. “Today’s VELCADE data confirmed the sustained clinical benefits, including overall survival and complete response that VELCADE provided in patients with previously untreated MM.”Peter, a member of the MM ListServ (moderated by Beth Morgan), sent me this announcement and we were waiting for the OK to publish. Then the holidays, my excessive traveling of late, and an opportunity to actually read it, delayed me in getting up here. It is good news for the elderly patient, whose treatment options are sometimes limited by their age and overall condition to venture down some of the more aggressive paths. And of course, whenever we make breakthroughs in this group and in the high risk groups, it is good news for us all.
Thank you Peter for asking me to put this up.
Dec 26th, 2011 by Lori Puente
A five part video series Discussing the topic “Is Myeloma Curable” were Bart Barlogie, M.D., Ph.D., director of the UAMS Myeloma Institute for Research and Therapy and professor of medicine in the UAMS College of Medicine, and S. Vincent Rajkumar, M.D., professor of medicine at the Mayo Clinic in Rochester, Minn.
I haven’t watched them all yet, but I’m sure it will be quite informative.
Ok, I’ve watched them all and if you can suffer through the patient example and some of the more technical aspects, you will indeed enjoy the debate, the humor and the admiration these two physicians and researchers have for one another. They are closer in agreement than you would expect. Just different schools of thought and approaches. These debates are incredibly valuable as we push forward in finding some measure of “cure” in multiple myeloma. It helps to shape where the research is going and as we find answers, how we can improve now the QOL of the patient. It’s not enough to survive it. We want to also THRIVE. We don’t ask for much.
I like very much that we have Rajkumar beating the drum for QOL, though I have sometimes not agreed with his blanket statements, without definition, of QOL. I think it can be as individual as the disease, but I’m very happy that he has focused his attention on this. Then I like that Barlogie is relentless on pushing the envelope in order to attain a sustainable complete response in patients that has durability which makes it worth our personal efforts to go through treatment. Being a trekkie fan, “bravely going where no man has gone before!”
They are both right.
Dec 26th, 2011 by Lori Puente
Myeloma Institute doctors presented research findings at the annual meeting of the American Society of Hematology (ASH), December 10-13. You can view ASH Abstracts at http://ash.confex.com/ash/2011/webprogram/start.html (search by “Barlogie”).
Onyx Therapeutics, Inc. has awarded $1 million over a two year period to Dr. Saad Usmani, Director of Developmental Therapeutics at the Myeloma Institute, for collaborative research studies, with specific focus on the Institute’s Total Therapy 5B and Total Therapy 7 protocols.
The Myeloma Institute announces the recent departure of John D. Shaughnessy, Jr., Ph.D., Director of Basic Research. After nearly 14 years with the Myeloma Institute, Dr. Shaughnessy has assumed a full-time position in the private sector with Signal Genetics to pursue development of targeted medications and treatments for multiple myeloma.
Dec 25th, 2011 by Lori Puente
“Information is not knowledge.” – Albert EinsteinI have noticed there are those who are very knowledgable about Multiple Myeloma and there are those who have information, and then there are those who have a very superficial understanding. I have also noticed that sometimes it’s the patient, sometimes the caregiver, but rarely is it both who have a pretty good understanding of the basics and beyond. I have also noticed that some, either with information or knowledge, get annoyed with those that can’t keep up. Like it’s a crime. And even those who challenge their doctors assessment of the reports, continually. Continue Reading »
Dec 24th, 2011 by Lori Puente
“Adversity has the effect of eliciting talents which, in prosperous circumstances, would have lain dormant.” - Horace 65-68 B.C. I have subscribed to a blog called Study Hacks for some years now. I’m a HUGE fan. This author doesn’t blog every day or even every week. But when he does, it is a turn your thinking on it’s head sort of experience. In a really good way. I have spread his blog around to many of my friends who have young children or kids getting ready for, or even in college. He writes it for the college kid, but really, for parents, it is a wonderful thing to read and rethink the cliches that pop out of our mouth. Things like, “find your passion and you’ll be happy” and so on. Continue Reading »
Dec 23rd, 2011 by Lori Puente
I have finally put a “Contact” tab up (across the top). This will allow some of you who might not feel comfortable leaving your comments to send me a message privately and more easily.
Dec 22nd, 2011 by Lori Puente
“Physical strength is measured by what we can carry; spiritual by what we can bear.” - UnknownWhen I started this blog, it was partly my own very personal need to heal from my experience of moving from sheer terror to triumphant regaining of our life. Albeit a different life than the one we had, but in many ways, much richer. A common occurrence with those on the cancer journey.
Dec 22nd, 2011 by Lori Puente
“New and wonderful, ‘Myeloma Blessings’ came into my life last night!” – Lori PuenteWow! I have come to embrace and truly LOVE the chance encounters I have in my daily life. It’s almost as if, “who or what will come into my life today?” Will they be for me? Or will I be for them? Or even better, for each other. Yesterday it was the latter. Continue Reading »
Dec 21st, 2011 by Lori Puente
“Just as a puppy can be more of a challenge than a gift, so too can the holidays.” – John ClaytonThe holidays can be both joyful and stressful.
When Dave and I were in Arkansas for the beginnings of his Tandem SCTs protocol… from Thanksgiving through New Year’s, it could have been a pity party. Continue Reading »
