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Before I get too tired (maybe I won’t this time?) I wanted to answer a few questions, and let you know I survived the day alright. The staff at LDS Hospital is top notch, they always manage to make a day like today tolerable and, dare I say, maybe even a little fun! Two important procedures have outcomes I’m very anxious to receive. The bone marrow biopsy will reveal if I am still in remission. The lumbar puncture will confirm whether or not any little blasty-nasties have gotten past the blood brain barrier. I’m not too worried. My blood counts show good recovery, but it will be nice to be sure in spite of the discomfort of both procedures.
- Feeding Tube: I agree, it is a little bit sexy. Except it makes my nose run.
- Power Port: Got to use it today. It is freaking awesome. It will make my life so much better. I already feel less vulnerable. Basically they poke a needle into the center of the port. The port has a flexible material that seals around the needle, then the needle is clamped into place. when the needle is pulled, the flexible material seals and I just have a little poke in the skin covering the device. It is GENIUS.
- Pride: Lots of comments on this point. Pride and control. What is remarkable is new phrases are entering my vocabulary. Like, “I can’t,” “I need to rest,” “Yes, you can help me,” “Would you help me do such and such.” They are awkward as yet, but eventually they will roll off my tongue.
I think there is some kind of pattern to when I feel like I have the capacity to write something. It has to do somewhat with where I am in my chemotherapy cycle, right now I’m in an off week…coming to the end of an off week. Last time I wrote I was just at the beginning of a cycle, so still in the “wellish” feeling stage. I really must keep a log of how I feel from one day to the next, I wonder if there are patterns and predictability?
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Last I wrote I had just been admitted to the hospital. I never ever felt ill. Never even had a fever. The second time they took a culture, I showed a gram positive bacteria, but that was later suspected false. Then, on Sunday the 28th the PA Nicole called and said the next set of cultures showed another gram negative, and asked if I felt well. Well I didn’t. But my symptoms were completely unusual, and inexplicable. The truth is I didn’t know how I felt, the only way I could describe it was: I feel like I am burning from the inside out, but I don’t have a fever. And I’m scared.
So back in the hospital I went, for more cultures, more IV antibiotics. We decided to pull the tri-catheter, just in case it was harboring the bacteria. They sent me home, but with the mystery of the hot flashes unsolved. Was it menopause? What was happening! Read more…
In America, we take our pound of flesh and our profits wherever we may find them. In our U.S. health care system, the opportunities to profit are plentiful no matter the pain, illness, worry or other suffering inflicted. For me, I now face a decision I have faced at other points in my life, but this time I am older and allegedly wiser.
This is a story played out all over America in homes where hard working people who have health concerns are faced with unimaginable choices. Just a few short weeks ago, I had a really good job with decent health insurance benefits. My husband is on Medicare (he’s older), and we also have purchased a really good supplemental (not an Advantage plan) for him. He has heart problems, and having good insurance is literally a matter of life and death for him. So, he is our priority and has been for the past 20-plus years in terms of health coverage.
It wasn’t until several years into my previous, really good, job that a colleague pushed me to sign my husband up for his supplemental coverage through my employer-based plan. I had tried in the past, but somehow the paperwork never quite went through the HR department, and we had spent more than $300/month for four years on that coverage. That was more than $10,000 out of our pockets that might have been avoided, but no one ever rushed to cover my hubby and his health issues.
Then there is me. Read more…
I was scared of anything medical, even way before the stroke. I waited eleven years to get a sinus operation, ten years to get a colonoscopy, and eight years to get hearing aids. Then I broke my shoulder in December, but my upper arm was still swollen five months later. And, of course, I was worried. Could it be blood clots again, this time in my arm, closer to my heart? So I decided, at last, to take action. Five months. I’m improving with age.
I went to the local imaging center in May, a chain that specializes in mostly MRIs, CT scans, ultrasounds, and X-rays. The technician scanned my arm with an ultrasound and told me that I didn’t have clots. The doctor verified the result in a letter. But what no one told me was the technician went up too far and scanned my thyroid, too. A few weeks later, I got another letter, recommending a biopsy because my thyroid had eight nodules, seven of them too small to worry about. The eighth one gave the doctor concern. I made another appointment as soon as possible which translated into three weeks, but a little background first on cancer and biopsies. .
Nodule. Carcinoma. Tumor. Malignancy. Lesion. I call it the “C word.” But no matter what you call it, cancer is cancer. I thought I had it from all the X-rays and CT scans over the last three, stroke-related years. Today, after the smoking PSAs and warnings on the cigarette packs, and a lot of pink depicting Breast Cancer Awareness, more than a million cancer deaths have been avoided in two decades. Read more…
Here’s where I am now: I’m tired of waiting to feel better, so I’m doing things anyway. I’m exercising anyway. I’m eating anyway. I’m washing the dishes anyway. Dr. Asch seems to imply that I will and should be feeling better soon, that there is some latency from Consolidation I and the CNS phases that I need to shed. I admit to feeling a bit stronger, but again I think it has to do more with my do-it-anyway policy than anything else. I just can’t imagine feeling better than this, when the schedule says chemo weekly! I may as well adjust to a body that is poisoned all the time.
Life has been awful and terrifying this past few months. I stopped eating. Went to 85 pounds. Dr. Peterson said, “It’s as if you are disappearing on us.” The truth is I was. I had lost the desire to live. I checked myself into the hospital. Was threatened with a feeding tube. Please don’t panic. I’m not in such a dark place as I was. But I was in a dark place, and touched a level of hopelessness I’d never experienced before:
Life is mundane. People’s conversations are inane. Going anywhere and doing anything is pointless. Everything we do as humans is to stave off boredom another day. Humans are hopelessly bored or boring. Why do any of us bother living, and why should I bother when it is so hard and I all I do is sleep and get poisoned? Read more…
The room was dark and quiet as I finished up my nursing note. My patient was tucked into her own bed and finally asleep as her daughter slowly ran her fingers through her mother’s white curls. I nodded goodbye and stepped out. Once in the car I checked my phone and found a message from the hospice intake worker that I had another patient to go and see…an urgent open. I read the directions and something tugged at my brain telling me I knew this address. I ran into the office to retrieve the paper work. Once back in my car I opened the file. The name was that of my friend…my friend that was NOT in the endstage of breast cancer with metastasization. “What is going on?” I muttered to myself.
I called the intake nurse and asked about the call for this patient. “I got an urgent call from her doctor telling me that she had just returned from Boston after receiving trial medications that failed…and she is days from dying. She wants to die at home…she asked for you.” My heart raced and my stomach clenched…tears ran down my face as I heaved in deep breaths…this cant be true…I just talked to her a couple weeks ago and she said how well she was doing…
I prayed during the 20 minute drive for courage, wisdom and strength…I prayed it wasn’t true.
I arrived to be welcomed at the door by my friend’s husband who was in tears. Read more…
A temporary construction wall inside LDS Hospital has become a place for oncology patients to vent with colorful words and drawings, providing an open forum for the emotions often hidden from those who’ve never heard the words, “You have cancer.”
– A Rainbow of Feelings on the wall, Deseret News
“Now that I’m bald, I can really see my face and my eyes, and they’re beautiful, and I see my heart in them,” wrote cancer patient Brandi Chase.
Caregivers in the cancer unit say it’s been a great form of therapy.
“It can be hard to get our patients up and moving. Sometimes they’re cooped up their rooms for two or three months at a time,” says nurse Tony Hall. “This gets them out and they can see what other people are going through. It helps their mood and makes them feel like they’re not alone.”
Today a total stranger said I was beautiful. This hasn’t happened to me in years. This may never have happened to me. She said, “You probably hear this all the time, but you are so beautiful.”
Wow. What a thing to hear.
Sure, my family tells me this. And my husband too, of course. And I’m sure they mean it! But the people you love are always beautiful. I’ve never considered myself empirically pretty.
This cancer stuff is really working for me. Read more…
Ground flax seed consumption may decrease breast cancer risk by slowing one’s menstrual cycle. It may also control prostate enlargement as effectively as the leading prescription drug.
The three top killers in the United States are no longer heart disease, cancer, and stroke. Stroke just moved down to number four. Number three is now COPD, chronic obstructive pulmonary disease, meaning respiratory disorders such as emphysema. We know we can prevent and even help treat the other top killers with diet (see, for example, Heart Disease: There Is a Cure and my 4-min. video Cancer Reversal Through Diet?), but what about COPD?
Though most COPD is caused by tobacco, up to a third of COPD sufferers never smoked. The title of an editorial in this month’s issue of the American Journal of Clinical Nutrition describes where some of the remainder of risk is coming from: “More Evidence for the Importance of Nutritional Factors in Chronic Obstructive Pulmonary Disease.”
As I explore in my 2-min. video Preventing COPD with Diet, data dating back 50 years found that high intake of fruits and vegetables was positively associated with lung function in general, but does that mean it could prevent COPD? There’s been a burst of new research over the last ten years to answer just that question.
In 2002 we learned that every extra serving of fruit we add to our daily diet may reduce our risk of getting and then eventually dying from COPD. In 2006 we could add tea drinking to fruits and vegetables for COPD prevention. In 2007 a twin pair of studies emerged, one from Columbia and another from Harvard, implicating cured meats such as bacon, bologna, ham, hot dogs, sausage, and salami as a risk factor for developing COPD. Read more…