A Caregiver's Inspirational Journey Through Cancer
Nov 19th, 2010 by Lori Puente
Great Post about all the diagnostic tests, and their explanations, a new patient endures when they venture to Little Rock, Arkansas, UAMS for consultation.
Its written by MM patient Sean Murray of Myeloma Youreloma at the Myeloma Beacon where he writes a wonderful column called: Sean’s Burgundy Thread
Nov 18th, 2010 by Lori Puente
“Making Light of Myeloma”A worthwhile post to read by Myeloma Patient, Sean Murray (click title link). I would encourage you to put him on your blog list if you are looking for inspiration and hope in fighting this disease. Sean, as a professional writer, has a lovely way of expressing himself on this very personal journey in a way that resonates with the tragedy of a diagnosis and how it impacts your family, your life, and your body. And yet, he never stops looking at the blessings in his life and the sometimes humor in dealing with MM. Perhaps its just who he is, but perhaps its also helped by the fact that when you are a patient at Little Rock, like Dave and I are, you are milling around with 100’s of other MM patients and caregivers. Because we think we OWN UAMS, in terms of our shear numbers, we just have more opportunities to laugh with others with tears rolling down our faces at the incredible insanity and difficulties of it all. Trust me, we laugh and cry A LOT in Little Rock. Continue Reading »
Nov 17th, 2010 by Lori Puente
“I was too old for a paper route, too young for Social Security and too tired for an affair.” – Erma BombeckI had an incredibly lovely conversation on the airplane on my way home, with a woman, similar in age to me, who had experienced a dramatic healthcare crisis with her husband. She too had been in the middle of a move, so we were having A LOT of “insider” laughter about the ridiculousness of what we had dealt with. Her husband had contracted Swine Flu and it almost killed him. He was in the hospital in a drug induced coma for a month. He can no longer work and she has become the bread winner. The more we talked and laughed the more intimate our conversation became. We starting talking about the financial hit an illness or disability takes on a family who is prepared for our loved ones to die, but never prepared for them to become seriously ill and unable to work.
She described to me their new situation… Continue Reading »
Nov 17th, 2010 by Lori Puente
“Life isn’t about waiting for the storm to pass. Its about learning to dance in the rain!” – UnknownI’ve just returned from my “speaking engagement” in Little Rock. A day of travel from Sacramento, nothing new there. There still isn’t a direct flight even when a travel agent takes care of it! A day of travel home and in between was a packed day of activity for me. Continue Reading »
Nov 9th, 2010 by Lori Puente
“The only courage that matters is the kind that gets you from one moment to the next.” ~Mignon McLaughlinOnce you have decided that you are going to move forward with a Stem Cell Transplant (SCT), there are naturally a lot of concerns about this process of wiping out your loved one’s immune system, putting it back together, and keeping them alive through the process. Fortunately, the Autologous SCT has a low mortality rate (under 3%), but it still a serious overall procedure and one that should not be taken lightly. Continue Reading »
Nov 8th, 2010 by Lori Puente
Clematis at my house in Maryland
Some months back I was contacted by a consulting group who organizes speaking engagements for particular disease modalities that they have been hired to work on.
Originally they were looking for Dave to participate. But after much conversation they agreed to allow me to participate in the Ambassador training program as a caregiver.
I was flown to Boston and met up with other MM patients and some caregivers to undergo training and understanding of FDA guidelines and rules. I had a fun filled packed 3 days in beautiful Boston. They allowed me to fly home a couple days later and I was able to connect up with some dear friends there.
Nov 2nd, 2010 by Lori Puente
George Washington
America is struggling right now on so many fronts. Individual citizens and as a nation. No matter what your political leanings, if you voted today, thank you. Thank you for exercising the one basic tenet that made America the greatest political experiment in the history of man. I have had my disappointments in politics, certainly. I know how it feels to win, to lose, and to feel apathetic. But no matter how I’m feeling, I drag myself to the polls and though I hold my nose at times when I pull the lever, I do pull the lever. I do so with some effort and attention to what I’m voting on, I do so because it is not only my right but an obligation of the heart. The heart of this nation depends on us –
Oct 24th, 2010 by Lori Puente
At the graveside service Carmen (Dub’s daughter) opened with the fact that when you flew with Dub, he would fuss with knobs and such to adjust the plane fuel just right to get what was called “Full Rich”.
My dear friend “Dub” passed away about a week and a half ago. It was unexpected, he had a stroke that became complicated by a subsequent heart attack. Dub had just had his 79th birthday a month ago. Continue Reading »
Oct 13th, 2010 by Lori Puente
I have put a link in my “Resources” tab from Don’s Myeloma Hope Blog regarding this. I found I was always hunting for it to pass along to someone who was trying to deal with this common side-effect from chemotherapy treatments.
I like this link so much, because he includes many different regimens that are being suggested, prescribed or used by facilities, doctors, and patients. Its a great place for you to start in your PN management journey. Continue Reading »
Oct 12th, 2010 by Lori Puente
Lone Tree, Lake Oroville, 2007
Standing vigil.
As the end became near and imminent – the realization of what was happening was beyond words. Everything that had led up to where we were in the dying process, all the fight, all the efforts, all the work, was culminating in this moment that was ebbing and flowing. It was no longer a regular day so to speak, it was a minute by minute sort of existence. It was oddly surreal. Continue Reading »
Oct 11th, 2010 by Lori Puente
Lone Tree, Lake Oroville, 2007
Thirty years later, my mother would die of cancer. It was not sudden, it was a process. Death and dying are two distinctly different experiences. After she had “survived” breast cancer, melanoma, thymoma, and kidney cancer, she had cancer in her liver, of which little could be done. Her cancers previously were simply cut out. None had spread, all were contained. Her post surgery treatment was minimal. This occurred over 12 years and she did an amazing job of “living”. Continue Reading »
Oct 10th, 2010 by Lori Puente
Lone Tree, Lake Oroville, 2007
It seems lately, that many folks I know and care for are dying or have died, from one form of cancer or another. It has a bit of a piling on feeling at the moment. Each of them have left loved ones behind and I’m having a hard time deciphering my grief from losing the person who has died and the grief and pain for those loved ones left behind. How to comfort them in some small way in their journey through the loss of someone so dear to them. It seems quite impossible really. There is little comfort for them. I understand how it is that people disappear when a person is going through stuff like this, if they feel they have nothing to offer them. No solution, no words, no help. Sometimes its a lack of courage or character, and sometimes it is just a genuine lack of knowing what to do. I have learned over the years in my own mournful journeys, not to judge them too harshly. Its their failing, not mine. Continue Reading »
Sep 29th, 2010 by Lori Puente
In my Resources Tab and my Blog Roll Links is The Myeloma Beacon which is one of the best sources of information, in my humble opinion, for MM patients and their families. I interviewed with them for a series of articles regarding Caregiving with MM.
Sep 29th, 2010 by Lori Puente
July 2008
Moving In
I have finally arrived in California. I don’t know how to describe the feelings I’m having about what was to be a fun grand adventure. It is still an adventure to be sure, but not at all how we imagined it when it all started last year. I find myself working to calm the hysteria I feel at times with all the many things I can have my attention on. What will happen to us, how will this end up, all my friends back east, all my friends from childhood out west, our new home, doctors, treatment, Dave’s job, the kids, the move, the boxes (oh man the boxes!), my hat turnover, and on and on. Many of these things would be going on if all things were “normal”, but it just seems overwhelming if I really LOOK at it. So, while I don’t bury my head in the sand, I try really hard to just focus on what I can, what is the priority of the moment and know, as my mother used to say, “that other stuff will still be there, waiting for you!” Continue Reading »
Sep 24th, 2010 by Lori Puente
Tuesday, July 15, 2008
Dave, Christmas Cruise 2007
Dave didn’t make many entries in his Caring Bridge, but he made a few… The photo you see is him having won the mini golf tournament on the ship in December 2007. He had a physical in November and by June 2008, he would be ravaged by Multiple Myeloma. We now know, that it is sometimes slow growing and undetected. That he had probably had it for a long, long time. But to look at him, just six months earlier you would never know that he wasn’t the pillar of good health (and an inch taller!). Continue Reading »
Sep 23rd, 2010 by Lori Puente
July 12 – 15, 2008
“… Calmness of mind is one of the beautiful jewels of wisdom.” – James AllenThings are heating up for my departure.
Dave is still giving me overall good reports on his condition. Sleeping OK, pain levels controlled and low level, but having a lot of muscle stiffness. Probably due to lack of movement, which he is very guarded about, understandably. He has another rad treatment and hopefully he’ll be done. He is tolerating the oral chemo and meds fairly well (Thalidomide/Dex). Continue Reading »
Sep 23rd, 2010 by Lori Puente
July 11, 2008
“Everyday holds the possibility of a miracle.” – Elizabeth DavidARGH! In the midst of all the things I’m dealing with, an employee at UMD mentioned to me that my car tags were days away from being what we call “dead”. It can be quite a pricey fine and I was in the midst of leaving for California and Hudson was in the midst of flying out to get the said car, the dog, and drive across the country. How was I going to handle all of this? I didn’t even have a Maryland home address anymore! Continue Reading »
Sep 22nd, 2010 by Lori Puente
Trying to “get back” to chronicling our journey with MM. The further we get away from it the harder it becomes as we all feel we are getting back to a more normal lifestyle. But… I feel it is important, for those in the throws of this journey to know that they are not alone in that overwhelming feeling you can have as your life, as you know it, slips away from you and things feel out of your control. Remember you can use the categories on the right to see just these entries and not all the other stuff I have written about.
July 11, 2008
My “hat”. My job.
RR (my boss) and I haven’t seen each other for a whole month! I fled to California when Dave went into the hospital and he was on travel abroad. I was originally on the hiring committee to help chose my replacement, but because I have such wonderful co-workers, they expertly carried on without me with even more urgency knowing my situation was radically changing. In an ideal world, I would have just kept working until a suitable replacement was found and more personally turned over my hat to them. Continue Reading »
Sep 10th, 2010 by Lori Puente
Kip
Finally! I’m home at last! I got in around midnight last night from Miami via Minneapolis/St Paul. A long day of traveling to be sure. My phone went on the fritz part way through my trip and then with all the traveling and no internet or phone I have felt very “unconnected” to my friends and the events of the world. Continue Reading »
Aug 29th, 2010 by Lori Puente
“Talk may be cheap but intelligent conversation is very expensive these days. Ask anyone with a kid in college.” – UnknownWell we made it, not too worse for wear. We arrived at Rosehaven Wednesday morning at 6 am. Paula was up of course, and we hugged and went to bed. I slept a couple of hours and got up, had coffee and breakfast with Paula and caught up on things. Around 10 am, I ushered Lily (one of her Jack Russell’s) into the bedroom and she leaped up and kissed Montana and laid down with her. When Montana got up she learned that Rosie (another Jack Russell) had a litter of three puppies. Continue Reading »
