What an amazing world in which we live today where with the flick of a button we can reach out and connect to others quickly and intimately, forming close and cherished friendships with people we would otherwise have never had the opportunity to meet.
I have only been a part of this blogoverse for a relatively short period: at times, avidly; at others, and far more often, much less so. But it is one of the warmest and most welcoming communities I have ever had the great fortune of which to be a part.
In the USA, today is Thanksgiving, a national holiday in which we gorge ourselves on a feast of as many comfort dishes that we can cram onto the table, fueling ourselves for the cut-throat marathon of Shopping on Black Friday, a national sport we have turned into an art form, where we consume as many unnecessary gadgets as we did unnecessary calories the day before.
We Americans often joke about this holiday, about being forced to share a meal with boorish relatives and endure endless political conversations where we turn blue at the table, not because we are choking on the over-salted stuffing but because we are biting our tongues so hard. (Those less mannerly should choke on the stuffing, in my humble opinion, because they don’t bite hard enough or they don’t bite at all, but that’s another topic for another day.) Of course, I type this with MY tongue firmly in my cheek, for such Blessings I have! In my little corner of the world, our Thanksgiving dinner has been postponed for a day so that I may fully recover from my 4th round of nasty cold and flu. But I am recovering! I am upright in bed instead of prone! That bed is in a comfortably warm and cozy home which is paramount when it’s in the single digits outside and surrounded by snow! I have a beloved husband with whom I have just celebrated our silver wedding anniversary and who is at this very moment cooking up the most ambrosial delights in our kitchen. I have a cherished Clan who doesn’t mind postponing dinner a day (well, MG IS cooking!!), because “having the meal and enjoying the company is the point,” not the day. I have an extended group of family and friends who have been pinging my phone with loving text messages throughout the day, reminding me that I am loved and missed and cherished. I have a loyal and furry friend who, even though barking his head off in warning to the neighbor canine who has dared to pee on “our” snow, still comes by to check on me every few minutes and to give me sweet kisses. And I have You, which was the point of this missive when I began typing much too long ago now…
In all of the hubbub and chaos and jesting of the day, Thanksgiving is the American day of Mindfully Counting Our Blessings. And I am grateful for All of You. You, who write faithfully, sharing your lives daily, cheering us on, constantly reaching out and enveloping us with comfort and joy and enriching our lives for the better. You don’t judge when we’ve been under a rock for months at a time and haven’t laid eyes on a keyboard, much less touched one. You don’t squander kindness. You don’t hold a grudge.
You write when you are in pain, when you are headed to hospital, when you are on holiday, when you are bereaved. You are constant and true in your grace and encouragement and in your care. I salute All of You. For those of you stateside, I wish you a Thanksgiving filled with Peace and Blessings. And for those of you across every pond, I wish you a day filled with Peaceful and Blessed Thanksgiving.
Chef Dan has also teamed up with the Make A Wish Colorado Foundation and will be donating multiple items to their gala in May 2020 but also will be donating 10% of all print book sales for the cancer awareness months of September through December 2019.
Chef Dan, as he is known to his students, was diagnosed with Stage III Multiple Myeloma in the summer of 2016 and has been in full remission for over three years. He credits this remission to his excellent medical care but also to his change of diet, which he altered immediately upon his diagnosis.
“I’ve always been a fairly healthy eater but I ddn’t eat as well as I could or should have. When you are diagnosed with a serious illness like cancer, much of the outcome is out of your hands, but not all of it. We must all do what we can to feel whole. As a chef for over 40 years and a culinary instructor for over 20, cooking and eating is what I know and what I can control. So I started there.”
He began an intensive chemo regime about 4 weeks after diagnosis, followed by an autologous stem cell transplant. While he was hospitalized during the transplant, he began writing Mix Match Make Take.
This cookbook is a game changer. The concept is simple. Cook in components: protein, foundation, vegetable, sauce. Rearrange in components. One cooking session yields several meals. Take your overstock with you the next day. All recipes can either be served cold or are easily reheatable. All are travel friendly. All recipes can be mixed and matched to your own diet preferences. Most recipes are gluten free, sugar free and dairy free. The few that are not, can easily be made so.
For those of you wondering what dog I may have in this hunt, well, suffice it to say that Chef Dan is also MG.
Thanking you in advance for your clicks on November 12th and for assisting Chef Dan in giving back to the cancer community!
My mom taught me how to read before I turned four. I still have my first primer, Fun With Dick and Jayne, pictured here, binding taped, pages curled and torn, a few crayon doodles scattered throughout. These primers are filled with simple sentences for new readers, like See Spot run and See Jane play, etc.
I can remember that I was so excited to be reading a book about a girl named Jane, since we shared the name. I may have spelled mine differently, but they still sounded the same and that made me feel special. One of the games I’d play during this time, was to shout out whatever I was doing: “See Jayne jump, Mom! Daddy, see Jayne hide!” As Mom and I delved deeper into the primers, I was learning new things just as Jane was learning them in the books.
After my fourth birthday, my mom was diagnosed with thyroid cancer. In the mid-1960s, the C Word was more often than not a death sentence and you were ashamed to admit having it. There was a stigma associated with being diagnosed, as though it were contagious. I don’t remember a lot from this time but I do remember hushed voices, closed doors, frantic whispers and the Catholic medals and scapular pinned to Mom’s mattress once she was home from the hospital. Everything was kept dark and I was always told to be quiet. It wasn’t long after this that my anxiety and panic attacks began in earnest. Once Mom recovered, I was completely stricken to have to leave her side but no one seemed to understand why. I didn’t want to play outside unless she left the back door open and I could see her inside the kitchen. Kindergarten was an absolute horror for me because that meant separation from Mom for several hours. The relief I would feel when I would find her waiting for me in the schoolyard after class was palpable.
Now understand that this was never articulated, let alone understood. I didn’t equate my mom possibly dying with not wanting to be away from her or with the beginning of my always present stupefying fear. Nor did anyone else. It’s funny, because over three decades later, after I “broke my back,” when so much of this long-ago -and-dealt-with-anxiety inevitably resurfaced along with other crap I had deeply buried, I seemed to be the only one who ever thought Mom’s life was in danger all those years ago. It was a shock to my family to learn that I had thought she might die at 30 years of age. For the record, she was treated, the cancer never returned, and Mom is a healthy and beautiful soon-to-be 83 year old. But for some reason, as a vulnerable four year old, I picked up on someone else’s fears or overheard an adult conversation not meant for my delicate ears. Somehow I had come to believe that I was going to lose my mom when I was four years old. And I firmly believe this ‘misunderstanding’ was the root of my nearly life-long battle with anxiety and agoraphobia.
Looking back and remembering the little girl I once was, at some point, I must have realized that Mom wasn’t going anywhere because the separation anxiety began to dissipate. But the fears did not. They increased and manifested into illness. Now going to school was The Problem. Every morning, I’d be sick with either a headache or nausea or a stomach ache. I’d have trouble breathing and feel faint or vomit. As soon as Mom told me that I didn’t have to go to school, I’d start to feel better. This was very confusing to a child of 5, 6, 7, 8…I KNEW that I was sick. I had real symptoms but as soon as it was past 8:00 am, when the school bell would ring for attendance and I was safe at home and tucked up warm in bed, the symptoms would start to gradually fade away. Once the evening came and it would be time to prepare for the next school day, the symptoms would appear again. I began to feel like a fraud. I KNEW I wasn’t lying or making things up but why would I always feel better when I no longer needed to go to school? This was a very difficult concept for a little kid to navigate and far too young of an age to begin to doubt oneself. But that’s exactly what I began to do; I thought I must be imagining it all. That something was wrong with my head.
School was now The Place I was absolutely petrified to go. I had a lot of anxiety and panic attacks during these years. The bullying began about 4th grade and lasted throughout high school. Of course this caused even more anxiety and an indelible trauma that lasted long into adulthood.
It took many many years before I was able to understand what I was experiencing. We didn’t use words like anxiety or panic disorder in the 60s, especially in terms of kids. And once I was able to figure things out, I had to learn how to manage it all. But I did it. First with the help of a psychologist and counselor in my freshman year of college who explained that what was happening to me was something called an anxiety or panic attack brought on by bouts of severe agoraphobia. I cannot express how knowing this and finally having an explanation, a diagnosis, validation that I wasn’t crazy, opened up my world. The fears were by no means gone but once I understood them, I could begin to manage them with further therapy. I finally settled into my own skin and liked the woman I was becoming and the life I was living. I had found my life partner, fell in love, married, and we were on a lovely journey together.
Then I broke my back. For years following the injury, I was The Patient. The Defendant. The Victim. The Disabled Wife. It was inevitable to fall into those roles and remain there for years as my medical case was never-ending. First, we fought for over three years for a proper diagnosis. Then, over the next several years we fought through multiple surgeries and endless recoveries. As soon as I’d finally recover mentally, physically and emotionally from one surgery, we would learn that I needed another. And another. And another, And another. And another. We fought to retain our home as our savings dwindled and dried up. We fought for our marriage when our roles as patient and caregiver were simply not enough. We fought to maintain my sanity when I thought I could take no more.
Through it all I firmly believed that if I just did this or if I just solved that, I’d be back to the way I was before. I’d be normal again and MG and I could get our lovely life back. But the years just kept marching on and the disappointments kept piling up. And the doubts from the child returned and manifested onto the adult. Why aren’t I healing? Could I be making this up? Am I really this sick? Is the pain really this bad? Why are people doubting me? If I were just a little stronger. If I could just push through…
Following a very dark period of self doubt, I crawled back into the light (another story for another time). I was finally forced into the realization that I was never going to be the Jayne I was before. There was simply no other recourse except to accept the new Jayne. I may have come to it kicking and screaming but I had finally come to terms with my injury and my limitations and the acceptance that this was the new normal.
But, unfortunately, that’s as far as I got. For the next few years, I was really just existing, living a half life in the shadows with nothing really changing except my age and the lines on my face. When MG was diagnosed with cancer, I was able to don the roles of Caregiver and Protector. And I managed those well, until they were no longer needed.
One of the reasons I began this blog was to find my voice again. And it worked. For a short time. I found some wonderful new friends and realized that I was one of a multitude living with chronic pain and multiple health issues.
But then what?
I remember those learning-to-read-with-Dick-and-Jane-years and I understand that over half of a century has passed by and yet here I am, at what feels like right smack dab back at the beginning! I seem to have come full circle. For what on earth is it that Jayne is supposed to do now? To learn now? Who is she? What is her purpose?
Much of our lives are lived by rote. We get up at a certain time, get dressed and head off to school or work or are busy getting loved ones off to school or work. We have responsibilities. Things to do and places to be. Whether we are cleaning the streets or researching a cure for cancer, we are all pieces of the puzzle. We all have our designated roles to play. But strip us of those roles and we flounder, or at least I have. Once I was no longer The Victim or The Patient or The Caregiver, I didn’t know who I was. I still don’t know. Perhaps The Blogger With Little To Say?
After far too many years, I’m attempting to find my way out of the shadows, out of the half life in which I’ve been living. I’m trying to reinvent myself and to figure out who this new Jayne really is for surely there must be more to her than her pain. I don’t want to wake up to another day and wonder if it’s worthwhile to get out of bed.
I ask myself again. Now what? What shall we See Jayne Do?
For people who live with chronic pain, getting up, out and moving can seem daunting. Some fear that physical activity will make their pain worse. But in fact, researchers find the opposite is true: The right kind of exercise can help reduce pain.
Today, Emma Dehne agrees. Dehne is 44, lives in Chapel Hill, N.C., and works as a business officer in the office of the executive vice chancellor at the University of North Carolina. She says her commitment to exercise is relatively recent.
Just a year and a half ago, Dehne pretty much avoided any physical movement she didn’t have to make. Just climbing stairs was painful — “sometimes to the point where I would have to hold on to the banister to help myself up,” she says, “and I couldn’t even extend my leg.” At times, it felt as though the ligaments in her knees “were tearing.”
Dehne was diagnosed around age 40 with osteoarthritis in both knees, a painful swelling and deterioration of the cushioning cartilage in those joints that reduces their range of motion. Luckily for her, she says, she worked at the Thurston Arthritis Research Center at the University of North Carolina. The woman working in the cubicle next to hers ran a program that encouraged people with osteoarthritis to start walking to help reduce their pain.
Dehne was skeptical but felt she was just too young to be burdened by this disease; she agreed to give brisk walks a try. In the beginning she felt stiff, tired and out of breath. That changed quickly.
“I mean literally, after a few days, I started to feel looser in my joints,” she says. “I wasn’t as out of breath, and my mood started to improve.”
She started out with 15- to 20-minute walks; today, Dehne walks about 40 minutes five times a week. She feels great being out in nature, breathing fresh air, taking in the scenery and talking to neighbors. As for her knees?
“My knees feel like they did when I was young,” Dehne says. “They don’t hurt me anymore.” And stairs? No problem. “I look up at them and say, ‘Oh yeah, that’s OK. I can do that — I can walk to the third floor of my building.’ “
It might seem hard to believe that walking with a painful joint could actually help reduce the pain. But movement helps mitigate the pain and damage of osteoarthritis in a number of ways.
For starters, building up surrounding muscles helps stabilize the hurting joint and also increases lubrication of the cartilage.
“Movement is essential for nutrition of the cartilage,” says Dr. Virginia Byers Kraus, a professor at Duke University’s Molecular Physiology Institute who serves on the research and medical committees of the Arthritis Foundation.
“Cartilage doesn’t have a blood supply but does have living cells,” she explains. “So the way it gets nutrition is by dynamic motion — putting weight off and on as you walk and move. The fluid inside the joint flows into and out of the cartilage like a sponge, so all the nutrients in the joint fluid get into the cartilage” and help slow any degradation there.
Neuroscientist Benedict Kolber with Duquesne University in Pittsburgh says exercise may also cause changes in the brain that can make a big difference in damping down pain.
“Exercise engages the endogenous opioid system,” he says, “so our bodies make opioids and use these opioids to decrease pain.”
In addition to other mechanisms still being worked out, natural opioids are thought to bind to the same receptors in the brain as opioid painkillers, Kolber says, but without the complications or potential for addiction. “There are some circumstances,” he says, “in which your body can produce so much of these natural opioids that you actually get some sense of euphoria” — hence the term runner’s high, a phenomenon athletes have long described.
Kolber says exercise also seems to activate parts of the brain that are involved in decreasing pain. “We get pain signals that are coming from our hands to our spinal cord and up to our brain,” he says, “and then we get these control systems — parts of our brain that seem to be activated in exercise — and that then turns down the pain system.”
And finally, Kolber says, exercise also seems to decrease stress. And stress can make people more sensitive to pain.
Dehne’s initial hesitancy to start walking is pretty typical of arthritis patients, according to exercise physiologist Kirsten Ambrose, program manager for the Osteoarthritis Action Alliance at the University of North Carolina.
“Chronic pain is debilitating, and a lot of people don’t want to be physically active,” Ambrose says, “because they’re afraid it will make their pain worse or damage their joints further.”
But Ambrose tells patients that gentle physical activity, gradually increased with a health care provider’s tailored guidance, will in fact improve their pain, and they need to “think about it as a form of treatment — something they can engage in safely and comfortably.”
Ambrose says a number of factors come into play to make that happen, including improvement in the quality of sleep, improvement in mood and a reduction in depression and anxiety. Exercise can “simply boost somebody’s self-efficacy, or their belief in their ability to be physically active,” she says. And that increased self-confidence can help ease pain too.
Walking for exercise isn’t the only such remedy, of course, but it is a simple and accessible form of physical activity. “You just need a pair of shoes and a safe location and off you go!” Ambrose says.
And, she says, most people who try it get some relief. After exercising routinely for a while, their pain diminishes, and they’re motivated to keep going.
“People tell us all the time that once they start exercising and experience the benefits, they become very committed to routine exercise,” says Marcy O’Koon of the Arthritis Foundation.
Back in his lab, neuroscientist Kolber wanted to know if the length of time spent exercising makes a difference in the amount of relief patients get. Could boosting the exercise level, or “the dose,” bring more relief?
“Anyone who develops any drug has to go through hundreds of different tests looking at dose,” Kolber says, “but in exercise there’s almost no data about dose — especially in the context of pain.”
So he recently conducted a small, weeklong study measuring 40 healthy women’s sensitivity to pain before and after bouts of exercise, using heat and pressure to elicit pain. The individuals were asked to walk briskly on a treadmill for 30 minutes. Some exercised three times that week, others five or 10 times.
He and his team found there was no difference in pain perception after exercise for those who walked just three times a week. But the findings were very different for the people who exercised five times or more each week.
“We asked them to rate that pain,” he says. “And at the end of the study, they rated the same pressure — the exact same pressure — as 60% less painful than they rated it at the beginning of the study.”
So if you’re going to try walking to ease your pain, don’t do it just once or twice and stop, Kolber advises. Shoot for getting out at least five times a week.
One word of caution: Exercise physiologist Ambrose recommends starting slow.
“Five minutes is very easy to think about,” she says, even for patients in moderate to severe pain. “Small chunks to start with and slowly progressing is the best way to go.”
She suggests people consult Walk With Ease, a walking program sponsored by the Arthritis Foundation. It provides resources, offers classes nationwide, provides tips on what to wear and when and how to stretch, among other benefits.
“It is structured, and it gives people very clear guidance on exactly how to start, how to set goals and how to track their progress so they can learn to walk safely and comfortably and reap the benefits for their arthritis symptoms,” she says. The idea is to make walking “a habit for life.”
Written by Patti Neighmond; reprinted in its entirety from NPR
Some of you know that I have been struggling for awhile. I have been feeling so lousy and have rarely left my bed. Consequently, I have felt that I had nothing of value to contribute to The Chronic Conversation. Needless to say, that’s not very heartening when I am such a newbie to the Blog World. Today, though, I got fired up and feel the need to write.
My pain journey would have had a very different path were it not for My Guy. He has been with me every step of the way, has patience beyond belief and has never, and I mean never, lost faith in me. I remember a conversation we had years ago when he told me, “I won’t give up on you as long as you don’t give up on yourself.” And I haven’t. I have certainly had really black times but I have always rallied in the end. I have not won the war but I’m still picking my battles.
There are many pertinent aspects of my relationship with my husband and how he has been indispensable to my chronic life. Since this is a blog, I promise not to write a book, so let’s discuss one aspect instead: What Do You Do When Your Caregiver Gets Sick?
In 2016, I traveled across the country to the family farm to spend some time with my parents. They had recently had some remodeling done to the farmhouse and my mom was having trouble with the contractors and bringing the project to a close. My dad, at 86, was in remission from stage IV lung cancer and while doing really well, he was not in a position to be of much help to Mom. And she was exhausted from firstly, nursing my dad back to health the year before and now, dealing with delinquent contractors and an entire house that needed to be put back together. I was in a fairly good place that Spring, physically and mentally; in a remission of sorts. So I flew out to the farm for what would become a few month’s stay. The farm has always been a rejuvenating place for me and I was excited to see everyone. Mom and I found a new contractor, got the work completed and I had a ball helping to redecorate and organize; two of my favorite things.
When I left home, My Guy was experiencing some fatigue and had been for awhile. We discussed seeing a doctor but he thought he was just having trouble sleeping and neither of us thought much more about it. I remember thinking at the time that maybe a break from worrying about me so much would be good for him. A welcome reprieve. I seriously believed that I was contributing to his stress, therefore causing added fatigue.
While I was away, in addition to a mountain of house stuff, I landed up in the hospital with a problematic kidney stone, because, sure, why not add to the load? At the same time, MG told me that his fatigue was getting worse and that he finally decided to see a doctor. Warning bells started to go off in my head. I can literally count the times on my fingers in the 27 years we have been together that MG has been sick. Knowing how long this fatigue had been going on and having him now relent and see a doctor must mean that something was seriously wrong.
Following two visits to the ER and surgical intervention, I was seeing a kidney specialist to wrap things up one day and MG was seeing his physician hundreds of miles away on the same day and ironically at the same time. He called me from the parking lot of his doctor and I answered from the parking lot of mine. The first thing he said to me was, “Don’t worry, I’m not going to die, but I have something called multiple myeloma. They say it’s totally treatable so I don’t think it’s a big deal”
My mom had accompanied me to my appointment that day. I remember sitting in the car across from her in the hot sun while talking with MG and feeling so relieved. I gave Mom the thumbs up, mouthing, “Everything’s okay. They figured it out.”
As soon as MG and I ended the call I looked up multiple myeloma on my phone as none of us had ever heard of it before. Oh. My. God! At first glance, this did not look like a “no big deal” to me. As soon as we returned to the farmhouse, I jumped online and began researching in earnest.
According to The Mayo Clinic, “Multiple myeloma is a cancer that forms in a type of white blood cell called a plasma cell. Plasma cells help you fight infections by making antibodies that recognize and attack germs. Multiple myeloma causes cancer cells to accumulate in the bone marrow, where they crowd out healthy blood cells.”
I begin to panic. In the past 27 years, whenever I was panicked or, let’s be honest, mildly upset, MG was there: solid, strong, unwavering. He is my rock, my touchstone, my reason in the face of insanity. But I was on the farm and he was way back home. I vividly remember sitting cross-legged on the big Civil War-era bedstead in the Red Room, Mom’s laptop to my left, my tablet on my right, feverishly taking notes on a stack of scratch paper from Dad’s desk, the bile rising higher and higher in my throat with each new fact I uncovered. I was bereft. My arms ached to hold MG. I needed him desperately. To comfort him. And to be comforted.
The plan all along had been for MG to drive across country to pick me up from the farm, along with a few antiques I found in some local shops. He would spend some time relaxing and hanging with the family and then we would drive back together with the dogs. Both of my parents and I were concerned about keeping to this plan. Driving from home to the farm was a long 2-day trek but MG loves to drive and couldn’t wait to get on the road. Road trips have always been balm to a smarting wound for him and nothing relaxes MG more than driving for a long period on the open road. The three of us could not dissuade him; he assured us he was not being irresponsible and knew he could handle it. He WANTED to do it: NEEDED to do it. I trusted him. The next day he was on his way.
The time between the parking lot phone call and MG’s departure from home to the farm was a matter of days. So not much time to process. The more I researched, the more frightened I became. I knew that I couldn’t rely on everything I found on the internet and tried to stay within the more reputable sites. But even those provided frightening statistics.
Holy Fucking Hell! I assure you I am selecting my verbiage carefully here. This is the part where the profanity becomes relevant: MM is an incurable and rare form of blood cancer and the survival rates are not high.
“Survival rates are based on comparing people with multiple myeloma to their peers who don’t have cancer. According to the American Cancer Society (ACS), these are the average survival rates by stage:
Stage 1: 62 months, which is approximately five years
Stage 2: 44 months, which is approximately three to four years
Stage 3: 29 months, which is approximately two to three years
It’s important to note that survival rates are calculated from the time treatment begins. The average is the median survival rate. This means that half of the people with multiple myeloma lived longer than the average length for each stage.
These figures include people treated over the past 5 to 25 years. The ACS notes that treatment has improved a great deal during that time period. This means that survival rates will hopefully continue to improve.”
I’m always the researcher in the family so MG tells me to see what I can learn about MM and we can make plans when he arrives. He, of course, knows it’s cancer as he has seen an oncologist but has been given very sketchy info by this man who does not specialize in blood cancers and whose bedside manner leaves a lot to be desired. Additional tests are ordered and MG is told to wait until all of the results are in before he makes any decisions regarding treatment. He will then be contacted by phone. He can take his planned trip and then he can began scheduling the treatment process upon our return. The office knows MG will be out of pocket for the two days he is traveling. MG packs up the dogs and hits the road.
Meanwhile, back on the farm, I am completely overwhelmed by what I am learning. I have a meltdown but make it a short one as adrenaline kicks in and I have work to do. My family is incredible and rallies round: the parents and all the cousins who live nearby. They are my lifeline now. A favorite cousin who is more like a sister is a veterinarian and her science background helps me to break down and understand the medical terminology and treatment protocols. She is there for me round the clock as I jump into the SUV and race the mile and a half to her adjoining farm to discuss some new fact I’ve discerned. And to hold me in her arms when I cry.
I stay up throughout the night researching oncologists in our area and read through hundreds of online resumes, trying to find the right specialist for our needs. As MG is driving, he tells me that he has gotten some information about a particular myeloma specialist from a physician friend who knows someone with the same disease. This someone has been in remission for over 14 years and tells our physician friend that MG should not see anyone but his specialist. The friend will text the name to MG.
I continue my research and end up with three myeloma specialists who stand far out from the rest in the field. But my gut tells me that one of the three is our guy. When MG arrives at the farm, he has the name of the specialist sent via text: it’s the same specialist. I feel that my research has been validated.
Let’s talk now about when My Guy arrives at the farm. Sweet Jesus, he looks horrible. I am in shock that in the few months I have been away, this is what has been happening to MG. He has aged fifteen years and has lost so much weight. There are permanent dark rings around his eyes and he looks haggard and, dear God…fragile. His face is as ashen as his hair and beard have become and I feel deep shame rising up within me that I have been away so long and not at home where I so obviously needed to be. When my sister/cousin sees him, she gives me a shocked look when he leaves the room and says, “My God, you’ve got to get him help now! We cannot wait!”
Now, MG is a warrior. He is a second degree black belt in Kempo karate and at 5’11 and 210 lbs, he is solid. His legs, which I adore, are like tree trunks. Not a sequoia but more elegant, like a Mountain Ash. He is firmly attached to the earth both in his level headedness and his spirit. He is strong, wins most arguments because he can shout louder than I, and can be rather intimidating to others, if crossed.
When he takes his shirt off that night as he undresses for bed, I want to weep. There are deep indentations where his arms meet his shoulders and he has an old man chest, not the brick wall which had last held me just a few short months ago. I have never seen him like this. MG trains regularly and although his extra 5 lb tummy comes and goes, everything about his physique is strong and healthy. But not anymore. A gaunt old man climbs into bed beside me that night and I crawl close, as though he could be snatched from me at any moment.
MG sleeps long and hard that night and in the morning tells us that it’s the best night’s sleep he’s had in months. After breakfast, we move upstairs to the great room with the laptop and all of my notes, as well as all of the paraphernalia that MG was given about myeloma to read up on. We begin comparing notes and then start making calls.
I cut and replaced this next section several times as it is a definite whine but I also think pertinent to the story. As MG was traveling, he missed two calls from the oncologist who diagnosed him but he wanted to wait until he arrived on the farm before returning the calls. He wanted to be with me when he heard the additional test results. Only two days have passed since the first missed call. That very morning as MG is about to contact the oncologist, the oncologist is calling him. MG answers but mobile reception is lousy in most areas of the farmhouse and as MG races to a better spot, the call is dropped. MG calls the office back at the same time the oncologist is leaving a very heated voicemail on MG’s cell.
It makes my blood boil every time I think about this bloody doctor. This physician knew about MG’s travel plans and that he might be difficult to reach within these two days. On the voicemail, he tells MG that he is not interested in working with a patient who obviously isn’t interested in taking care of himself and to find another doctor. When MG explains the missed connections to his nurse, reminds her about his travel, and that he just that minute missed the doctor’s call, she says she understands but that the doctor can no longer take his case. Although this seems entirely irrational to MG, he calmly tells the nurse that he understands but that he needs to speak with the doctor to get his test results. The doctor refuses to speak with him (we can hear him through the bloody phone bloody whispering to his nurse and the nurse is the one left giving MG the results. Who the hell does that? And wait until you hear the results!
Eighty percent of MG’s blood marrow is cancerous, he is going into renal failure, his skull is literally littered with lesions, and his cancer is at Stage III. We feel as though we have each been slapped across the face AND punched in the gut.
We stare at each other stupified. Our mouths literally hanging open. You find out you have cancer, you ‘re in shock, you play phone tag with a medical professional for two days and you’re deemed unworthy of care because said medical professional has been inconvenienced because you missed his calls? Un-fucking-believeable!
Onward! After we remove ourselves from the ceiling and calm down, MG proceeds to call the specialist we had both found. I find this serendipitous and we are both high with anticipation. His office staff is extremely professional and kind but explain that the doctor is booked six months’ out. Do we want to make an appointment? We do. Would we consider another physician in his group? Well, we prefer not but we answer in the affirmative anyway. She is available in 3 months. Okay. We also call the other two specialists I found in my research and make appointments. No one is available for at least 6 weeks. We’re not certain what to do. We’re still trying to process but remain calm. It’s not easy. What the hell do we do now? Do we have 6 weeks? We don’t even know how aggressive this cancer is and there is no one who can tell us.
MG and I are sitting upstairs in the newly added great room. It is a large room, hence the name and there are floor to ceiling windows on three sides. Outside there are scores of mature trees and rolling pastures. It’s a bright sunny day and all is calm and beautiful. You can hear a tractor motor in the distance and a cow calling for her calf. The dogs and cat are frolicking on the lawn and the cat is definitely in charge. We feel as though we are sitting in a luxurious tree house with all of the greenery spilling in through the tall windows. It’s truly a piece of heaven. But in spite of all of this peace and beauty and tranquility, we appear to have fallen deep into hell.
Dan’s cell rings and he picks up. It’s the office of the first specialist. The one who we both found and who was booked 6 months’ out. He will see us if we can be in his office at 7:00 am on Friday. Can we be there? It’s Wednesday afternoon and we’re 1500 miles away. MG says yes and concludes the call.
We’re speechless. Again! All of this has happened within 90 minutes. Relief that we are finally together sorting things out. Anxiety about trying to reach the oncologist. Disbelief followed by Anger at the oncologist’s non-response. Shock as we process the test results. Anticipation as we attempt to see the specialist. Disheartenment as we realize he is booked so far out. Fear as we cannot find anyone to see us right away. Helplessness as we are not certain how to proceed. And now, Excitement and Relief and Dismay and Hope that a miracle may have just happened.
MG paces the room, anticipation growing. “We need to get the dogs and get packed right away! Can you be ready in half an hour?” I look at him and try to focus. “We’re not driving. That’s crazy! We’ll fly there, go to the appointment, fly back and drive home.” MG agrees. “Of course. I’m not thinking straight.”
I jump onto Travelocity and look for flights. The only option for us is to use a regional airport but flights are few. I get us booked on a morning flight but with two layovers, we don’t arrive at our home airport until midnight. By the time we get home and crawl our sorry bums up the stairs to bed, it’s past two in the morning. Our appointment with the specialist is in five hours.
To be continued: When the Patient Becomes the Caregiver
I am so beyond excited!! I’ve been blogging for like, um, 10 minutes, and I’ve already been nominated for a few awards. How freaking cool is that?? I must thank my new friend Kim at I Tripped Over a Stone for so thoughtfully nominating me for The Disability Award! She has truly been amazing with all of the help she has offered to this very grateful, but also, very newbie blogger. Kim accepted her award last month and you can read about that and her responses here.
Being a newbie, I didn’t really know what blog awards were about so I did a little digging. The Disability Blogger Award (or Kim’s terrific spin, The disAbility Award – I like!) was developed by Georgina who blogs at Chronillicles. Georgina is just 18 years old and living life one day at a time with undiagnosed chronic illness. She wanted to start a blog award for those blogging in the particular niche of Disability, Chronic Illness, Mental Illness and Special Needs so that we can celebrate each other specifically. It’s really a terrific idea and I am honored to a be a part of this continuing celebration of my fellow Spoonies, Zebras, and Chronics! You can read more about Georgina’s development of the award here.
The Official Disability Blogger Award Rules Outlined by Award Creator Georgina:
Thank your nominator
Recognise Georgina from Chronillicles as the creator of this award and link her URL: https://www.chronillicles.com
Use the logo (found below) somewhere in the post
Answer your nominator’s questions
Write 5-15 of your own questions – they don’t have to be illness related!
Nominate 5-15 other disability, chronic illness, mental illness or special needs bloggers
Comment on each of your nominees’ latest posts to tell them they have been nominated
The Official Disability Blogger Award Logo by Creator Georgina:
Nominator Kim’s Questions:
Kim came up with some terrific questions and I must admit that one of the reasons I hadn’t immediately accepted this award was that I really had to think about my responses. These weren’t easy questions for me.
1. What were the first symptoms you experienced?
I injured my spine with a simple banana-peel type fall causing severe damage to L4/L5 /S1/C3/C4/C5 and the coccyx. The resulting symptoms were agonizing back and neck pain, ice pick headaches, the inability to sit or stand for more than 10-20 minutes without excruciating pain, incontinence, insomnia, hours-long inexplicable body twitches and maddening nerve sensations in my limbs, and my emotions were all over the place. The entire package was debilitating and completely misdiagnosed for the first three years. The headaches weren’t correctly diagnosed for ten years.
2. Name one good thing that has come out of your chronic illness?
I honestly don’t know how to answer this. I could say that I am more compassionate and understanding. Less judgmental. But I’d like to think that would have been a part of my natural evolution as a woman. This one really stumps me. BUT. I will say this. There are times, albeit brief and oh so fleeting, that I can intuit that life may be lived differently than I had otherwise believed. That perhaps, even though my world has shrunk to such minute parameters, peace, contentment, personal growth and awareness, and solid steps toward enlightenment remain a definite possibility.
3. What is one thing that is believed to be accurate about your condition that isn’t?
That I still live a somewhat normal life. I do not. Nothing about this new life resembles my former life. I no longer drive. I no longer work. I don’t run errands. I rarely leave the house and certainly not two days in a row. Getting out of the house is an enormous feat. If My Guy merely mentions the possibility of more than one stop on the rare occasions that we are out and about, I’m immediately in panic mode that it will be too much. I don’t see many people. Most days, I am struggling to just get through. When people do see me, I am generally well groomed and upbeat. I look perfectly normal. Nothing could be farther from the truth. But that’s because I only allow myself to be seen when I’m okay. When I’m not, the only person who sees me is my husband.
4. What is the worst symptom you deal with?
The ice pick headaches caused by occipital neuralgia are beyond hell. There is simply no word to describe them. I had them for ten years before they were properly diagnosed. Weeks and weeks without reprieve, the feeling of an ice pick through the eyeball. Then they’d vanish for a few days and start up all over again. movement of any kind was agony. Now they are mostly managed with injections. How I did not go mad, living for a decade in that state astonishes me. But, thank God, they are now managed. The worst symptom I NOW deal with is that the body pain never ends. One good day out of 30 is not acceptable.
5. What advice would you give to someone who is newly diagnosed?
Number 1. Keep a journal. Nothing is too insignificant to note. Not if you are searching for the proper treatment or there is a possibility of a misdiagnosis. Number 2. Doctors are not infallible nor is every doctor the right fit for you. If something doesn’t feel right, keep asking questions. If you don’t get answers, you’re in the wrong place. Number 3. You MUST be your best advocate. Research your condition. Research treatment plans. Research doctors. And DO NOT BE A VICTIM. YOU ARE IN CHARGE OF YOUR HEALING! This is not the time to be passive. Stand your ground.
6. What is one thing you miss doing before you were diagnosed?
One thing?! EVERYthing! Using my skills, having a career, being a worthwhile partner, socializing, throwing fabulous dinner parties, traveling, going to the theatre, trying new restaurants, spontaneous sex, managing my household, shopping, driving, HAVING FUN, being excited about the future, making plans, KEEPING plans, earning an income, being a participant instead of an observer.
7. What is the one thing that you do that helps the most with your symptoms?
Without medication, life would be unbearable. Without My Guy, it would be impossible.
8. Do you find the word, “disability,” offensive?
Not at all.
9. Since your illness, what is the most important lesson you have learned about yourself?
I have more strength than I ever thought possible. Few people in my life understand the challenges I face; many others do not. Those who do not would be absolutely shocked if they were able to step into my body and live a week with the pain I experience. Hell, I’m shocked! For years after the accident, I thought I was weak, and that weakness prevented me from healing. That belief and disbelief in myself really brought me to my knees. I no longer believe that. I am a very strong woman and I am proud of that strength.
10. Do you celebrate the 4th of July?
If I can. I love to see fireworks and cookouts were always a big deal on the Fourth in my family. My uncle’s birthday was July 2, my dad’s was on the 3rd and my grandfather’s on the 4th. I have SO many happy memories of those celebrations from my youth. For so many years after the accident, I would stand out on our roof-deck after dark on Independence Day, straining my neck to get a glimpse of fireworks in the distance. As silly as it sounds, I can’t tell you how sad I would feel, every bloody July, missing out once again. It was, for me, a very poignant reminder of the passing of time.
Do you ever struggle getting out of bed in the morning and having to face a new day? If so, how do you manage that?
Does your diet play a significant role in how you feel or manage your condition? If so, what foods are significant? What foods have you had to erase from your diet?
What have you learned about yourself that you hope others with chronic illness will learn?
How do you spend a typical day? What denotes a good day? Will you describe a bad day?
How do you maintain your voice in the world?
I realize that awards, while exciting and celebratory and as well-intentioned as they may be, may not always be convenient. No matter. I celebrate you. I find joy in your blog. I admire your fortitude. If you are unable to receive, I completely understand. There is no acceptance limitation. The award is yours at any time. Should you, however, accept this mission, I kindly ask that you honor Georgina’s rules listed above. Cheers!
My nominees are a great group of bloggers who regularly post in this niche and if you haven’t stopped by for a visit recently, now is the perfect time to like a post, say a quick hello, or settle in for a longer reading and commenting session.
And the Disability Blogger Awards go to…drum roll please…
I’m taking a break as I rest up from a little treatment for my occipital neuralgia. So many of you have been so kind to stop by and visit and take the time to leave a comment or two and I just adore reading your notes and getting to know you all better. Thank you! I haven’t had it in me to respond much but I will soon!
Until I’m back and really able to dive into the blogosphere, I want to quickly mention a couple of things. I have visited so many of you and made comments to your posts or sent greeting emails through your contact pages and I think I may be ending up in your spam folders. Several of you have found me there and simply from the amount of comments that appear to have gotten lost in the ether, I can’t imagine that many of you have rejected me. (Oh no! That didn’t really occur to me until this minute!!)
I also have noted that many of you have mentioned that you have had trouble commenting on my site. Until I get this all figured out, I just wanted you to know that I’ve heard you and am trying to remedy it. Until I do, please don’t forget about me or lose faith in my commitment. We’re just getting to know one another!!