“An identity would seem to be arrived at by the way in which the person faces and uses his experience.” – James Baldwin
Indeed. All that I am comes from all that I have been, places I’ve visited and lived, people I have met along my life’s journey.
Early on in my life, I was the daughter of a man who had accomplished much. Then I was the daughter who had lost her father under tragic circumstances. Then the granddaughter of Otis & Ruth Hudson. Sister to Lynn. Then for a brief time, I was just me, and then I became Dave’s wife, and Hudson & Montana’s mother. I didn’t realize for a long time that I had given up certain hopes and dreams of a career for the greater good. I have no regrets at all. But I realized when Dave lost his job in 2001 as a telecom/satellite engineer, that our identities are often so wrapped up in what we DO that we don’t even realize that it is simply what we DO, and not who we ARE. Continue Reading »
“Anniversary: The annually recurring date of a past event, especially one of historical, national, or personal importance.” – American Heritage Dictionary
With cancer being so prevalent in our society today, it seems as though I can be in a room full of people and at least a third of them have had cancer and the rest of them have had it hit close to home. Long gone are the days of the 60s when no one said it out loud and it was all a big secret. Afraid of the social stigma associated with cancer and people actually thinking it was contagious. (Now I’m not saying that there still isn’t some stigmas and social death that occurs with cancer, there is, but it is light years from what it used to be, and for that I’m grateful.)
“Each person’s life is lived as a series of conversations.” – Deborah Tannen
Well, while I’m waiting for my friends to send me the photos from our trip out to a small Alpaca farm for a day of sheering… I thought I would dialog a bit about how the last several days I find myself talking a lot with cancer patients.
When I started this blog, I had a twofold, maybe threefold purpose. Selfish first: For my own healing. Then I wanted desperately to find a way to reach out and help others newly on this path in a way that would help them to breathe and make better decisions. Be better patients and caregivers, children and parents, friends and co-workers. But the third reason was that I felt it would be efficient and practical. I like efficiency and all things practical. I’m seldom frivolous, though sometimes I allow it as it has it’s own place in our lives and if it brings joy, I’m all for it.
One thing I didn’t want to become was a “Myeloma Guru”. I didn’t want Myeloma or Cancer to be the center of my life or my purpose. My blog was a way for me to give back, which I certainly have an innate urge to do. But allowed me to do it in a way I was comfortable with. The amount of time spent, the topics, etc. It has been all that and more. Continue Reading »
“Don’t judge each day by the harvest you reap but by the seeds you plant.” – Robert Louis Stevenson.
It has felt soooooo good to be back on my blog. Sometimes topics just flood my mind endlessly and then other times I’m all dried up! Being away from it with little to no connectivity made it pretty impossible for me to really do much while I was away. The good part about that was, I was in the here and now, visiting family and friends with little distraction.
“Faith is the daring of the soul to go farther than it can see.” – Unknown
David Withem over at Working With Me started a Myeloma 101 website and then from there started a YouTube selected videos offering hope and inspiration. They are works in progress and he graciously tries to share with us those things he finds that gives him hope.
The Chinese character for "crisis". One means "danger" and the other means "opportunity."
“You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” – Brian Tracy
Needing or asking for help from others often pushes us way outside our comfort zone. We are the ones who reach out to help others and now we find ourselves desperately trying to migrate our way through a cancer diagnosis and fear we may have never experienced before. Often when this happens it is added on the top of our already full lives. It gets plopped right on top of the heap and dwarfs all that we have that makes us who we are. We push and push to lift it off while at the same time keeping all our plates spinning in the air teetering with the slightest movement that impinges on that delicate balance. It takes us a while to figure out that all that is absurdly ridiculous. And often even longer to ask for help or to be willing to accept it. The time it takes us to figure this out is an interesting one. Continue Reading »
“Fear is only as deep as the mind allows.” – Japanese Proverb
There are times that a topic seems to speak to me with a mega phone. It comes from various sources and begins to clobber me over the head as something that needs to be spoken out loud, and in my case, written here, hitting the “publish” button and praying I haven’t offended, upset or hurt anyone. When folks leave me comments of support or share their own story I’m always relieved. Of course I have more readers than commenters, but I hope that those who fly by under the radar gain something positive from some of the more difficult topics I try to tackle. Continue Reading »
“There is no such thing in anyone’s life as an unimportant day.” – Alexander Woollcott, American Author
Wowsa! What a trip! I was gone for about 11 days traveling back east to visit with our daughter Montana. Dave flew to Baltimore after his business meetings in Rochester and we had a fast and furious weekend with the three of us together. Continue Reading »
In the hospital enjoying Hudson's insistence on holding his baby sister 1989
“Families are like fudge – mostly sweet with a few nuts.” ~Author Unknown
I haven’t posted in a while!!! Been swamped with life! A good thing in Myelomaville. So know when I’m absent for a while things are probably going gang busters!
We have had a lot going on of late. Dave finally got over that long and lingering cold that was making me nervous and agitated. We head off to Little Rock the end of this month for our bi-annual romantic 3 days of MRIs, PETs, Bone Marrow Biopsies, etc. When we were all done with the major medical intervention and knew that we would be going back every 6 months for check ups, I told Dave when we start doing that, I want a completely different Arkansas experience. One that brings us fulfillment and joy, one that we look forward to. He got it. So we always find wonderful little places to stay within our budget that allow for us to enjoy the loveliness of Little Rock. It’s great restaurants and little bars, the River Market District, etc. We also work to meet up with folks that are there for their checkup or treatment that we have befriended either in person or online. Opportunities for a Myeloma Meet Up are always at the top of my agenda. Continue Reading »
“There are three side effects of acid: enhanced long-term memory, decreased short-term memory, and I forget the third.” – Timothy Leary
For those of us through treatment – been there, done that. The long list of potential side effects from the treatment to combat myeloma is long and scary. For those newly on this road, prepare yourself, emotionally, for the full disclosure of problems you may encounter from your treatment, including death and other cancers. Continue Reading »
“You can’t change the past, but you can ruin the present by worrying about the future.” – Anonymous
Sometimes I just don’t have anything to write about that I feel is worthy of a post. It’s not that there aren’t things going on, it’s just, you know, sometimes I think my standards are too high to bore you with Lori’s Musings (which BTW is the title of my tumblr page!).
I had put this title in my drafts over a year ago. Blame, Shame, Regret. It is something, I think, can completely ruin people, their lives, and those who love them. Make no mistake, it is not a harmless crime against yourself. You effect others, even if it pisses you off that you do! So once again, it’s finding that balance. Where you move from just being self determined in your thoughts and life, to broadening your sphere and actually caring also about others who are in your proximity. Taking responsibility however great or small, for how your own feelings bleed over into the environment and effect others. Positively or negatively. Continue Reading »
An e-patient (also known as Internet patient, or Internet-savvy patient) is a health consumer who uses the Internet to gather information about a medical condition of particular interest to them, and who use electronic communication tools (including Web 2.0 tools) in coping with medical conditions.
The term encompasses both those who seek online guidance for their own ailments and the friends and family members (e-Caregivers) who go online on their behalf. e-Patients report two effects of their online health research: “better health information and services, and different (but not always better) relationships with their doctors.”
As use of the term e-Patient has evolved, there has been less emphasis on Internet access and technology, and a contentio that the “e” in “e-patient” stands for “empowered, engaged, equipped, enabled.” – Wikipedia web definition
“I don’t mind because I was knitting and when I’m knitting, I’m happy.” My cousin Robin when I told her I had to pull out and restart my project.
So much going on. Writing on the eight labyrinths backlogged all my other newsy stuff.
Last week I had a Myeloma Meet-Up with some MM folks that are part of the Myeloma Support Group Facebook Page. As we were asking questions and such, it was discovered that a number of us were in and around the Sacramento area, so a lunch was hastily scheduled and five of us met up at a Panera Bread for lunch. What a joyful afternoon to spend it with new friends, all connected by something not so joyful, but reaching out to each other like old, long lost friends. One was another caregiver newly on this journey and having the usual diagnosis and insurance issues they are contending with. Another who had a SCT and remission who has relapsed but is stable. Continue Reading »
“Take cover – it’s DEX DAY!” – Myeloma Caregivers joking around with each other on the subject of the steroid, Dexamethasone.
Dexamethasone, is a love/hate relationship. It has clearly been shown to enhance the chemotherapy drugs myeloma patients are taking in all genre’s of treatment. That’s the love part, in case you’re wondering. But it’s a muscle waster, not a muscle builder, and it changes the body dramatically, it’s look and strength. It can increase the chances of developing diabetes if you don’t become very proactive on your Dex Days and subsequent days coming off the intense energy, about what you are eating. In the case of my husband, they took him off it after 18 months; he developed serious edema (water retention) that potentially could have caused a whole host of other health issues. But I think the change we all notice most is how aggressive our loved ones are. Continue Reading »
“Being there and helping someone I love, in the leaving of their earthly body, was a profound gift that I was honored she allowed me to do for her. In many ways it was she who gave me the gift and not the other way around.” Lori Puente, on the death and dying of her mother
From Gail Sheehy’s Eight Labyrinths and the book Passages in Caregiving:
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VIII. The Long Good-bye
This is the last turning. No one can answer your most burning question. How long? Inevitably, there will be times when you see your loved one suffering that you will likely feel: Why can’t you die? It’s enough. Then, of course, you’ll feel guilty for thinking such a thing. But it is entirely human and predictable. Continue Reading »
“If you realize that all things change, there is nothing you will try to hold on to. If you are not afraid of dying, there is nothing you cannot achieve.” – Lao Tzu
From Gail Sheehy’s Eight Labyrinths and the book Passages in Caregiving:
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VII. The In-Between Stage
This is a momentous turning point for those who care for the chronically ill. Your loved one cannot be cured in an acute-care hospital, but he or she is not ready to die—and may live on for years. But our health-care system has little to offer at this stage, except round-trips to the emergency room and readmissions to the hospital. One in five Medicare patients is returned to the hospital within a month of discharge. Why? Because insurers pay hospitals to treat disease, instead of rewarding them for following the patient with decent aftercare at home that will keep them healthy and reduce the number of round-trips. These readmissions are debilitating for both the patient and the caregiver. And they cost the federal government an estimated $17 billion a year. Continue Reading »
“The secret of health for both mind and body is not to mourn for the past, not to worry about the future, or not to anticipate troubles, but to live in the present moment wisely and earnestly.” – Siddhartha Gautama (Buddha)
From Gail Sheehy’s Eight Labyrinths and the book Passages in Caregiving:
“Courage isn’t the absence of fear; it’s the dealing with it.”
From Gail Sheehy’s Eight Labyrinths and the book Passages in Caregiving:
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V. “I Can’t Do This Anymore!”
You were convinced you could do it differently. You’d be fine. But one day, a year or two or three later, you break into tears, totally fatigued. Same thing the next day. You’ve given up so much. You’re cracking. You absolutely must come up for air or you’ll go down in despair. Continue Reading »
“An identity would seem to be arrived at by the way in which the person faces and uses his experience.” – James Baldwin
