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Nurse Talk BlogLymphoblaster
Follow along with Brandi Chase as our guide on her way through 2 years of chemotherapy in her successful journey through Acute Lymphoblastic Leukemia, a cancer of the white blood cells which can be fatal in as little as a few weeks if left untreated.
Nurse Talk is republishing her powerful and personal reflections that inspire and guide not only those affected by cancer, but all of us struggling to find meaning and gratitude in the lives we live.
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?
No More Access
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. Read more…
Apparently, I have a nasty bacteria (Gram Negative-bacteria) that will kill me if we don’t kill it first. I feel fine, so I think we’re on top of it. It makes me feel great that Sharon, the nurse who spotted my erratic fever on Friday followed through and took the cultures that revealed the bacteria. And I thought it was just my nice woolen cap overheating my ears!
Even though I’m back in the hospital, my spirits are high and I’m feeling better. I decided to go ahead and have a feeding tube just to help me get those extra calories while I’m sleeping and to take the pressure off of worrying about food all the time. I’m a worrier. I can’t say having a tube up my nose is the most comfortable thing, but it is a fashion statement of sorts. My whole appearance these days is a fashion statement: I’m a cancer patient. No hair, no eyebrows, no eyelashes, tube up the nose and looped over the ear, chubby steroid cheeks, geeky hat, swollen feet, no butt, chicken legs, tri-catheter. I’ve moved from despair to comedy. I just couldn’t look much more ridiculous. My ideas about my outward appearance are certainly radicalizing. Read more…
This is the Angel Card I drew while I was visiting my sister. These angel cards are eerily meaningful. Whether or not they are predictors, or if they just happen to give you the nudge you need when you need it—well, I guess it doesn’t really matter. Crystal had the news I needed to hear, when I needed to hear it. My wonderful sister Kim framed this card for me.
I have energy. Its not long, long lasting, but it is palpable. My strength is returning. Yesterday, while walking up an incline, I felt the smallest stirring in my glutes. I may get my butt back yet!
Yesterday Randin and I hired a chef to come a few nights a week to cook, (obviously), but also to instruct us. This woman, Dawn, has also experienced the terror of low, low weight. She’s been to 85 and back, and so knows what I am up against. I really believe she can help me through my weight gain, to do it healthfully, and most importantly sustainably, intelligently, and lovingly.
Yesterday was also a chemo day. The doctors were surprised that my blood counts recovered enough to receive it. They tell me there is nothing I can do to effect my counts, that it is simply something that happens on its own. 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. Read more…
Today at the local Whole Foods, while shopping for quick sushi (cooked varieties only! don’t worry Dr. Asch!), I startled a little boy. Startled, intrigued, fascinated, I don’t know. Actually it wasn’t me it was my mask. He stared, and then he got his brother to stare along with him. Finally I said, “You are probably wondering why I am wearing this mask. (he nodded.) I’m wearing it because I have a disease, called leukemia.”
Suddenly he moved away from me, behind his mother’s legs. I said, “Oh no, no. You don’t need to be afraid of me. I can not give you leukemia. Its me who has to protect myself from you! You see I can get sick really easily, when I am out and about I wear this mask to protect myself.”
Kids are so good. They at least look for the reasons why, and hem and haw until they get at them. Adults just stare, unless they have a good reasonable, mature cause to ask. Apparently the two TV news spots have been sufficient. On the way out of the store a patron walking in asked, “Aren’t you the woman that was on the news last night.” I affirmed. Read more…
You might be wondering, well, what’s going on with Brandi? Why isn’t she writing and video making and all that stuff anymore? The truth is I never knew I could be so tired, or weak, or overwhelmed, or scared. Yes, its true, I’ve been having a hard time. Take a gal whose energy level is a ten, and reduce it to -2.5 and well, she starts to doubt. My life is a cycle of pills and tests to take, appointments to make, chemos to process.
I have been blessed with a very strong body, but in the course of my chemotherapy my strong body has become emaciated. I’m down to my essence. I ask: can I really do this? I get winded and my heart races going up stairs. I weigh 90 pounds. My faith is shaken, because my body is not strong anymore. I’m a featherweight.
I have finished Consolidation I and the Central Nervous System portions of my treatment and am currently in the midst of my week break before beginning Consolidation II, this thursday. Nothing has gone wrong. The protocol is simply aggressive and relentless. I remember at the outset meeting the two gents who are ahead of me. 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…
Being a patient patient: cultivating fortitude and calm.
n. a person who is under medical care or treatment.
adj. bearing provocation, annoyance, misfortune, delay, hardship, pain, etc., with fortitude and calm and without complaint, anger, or the like.
Okay. After this week I am officially over it. I am tired of taking pills x number of times a day and at certain hours; going to doctor’s appointments and waiting; my body changing and worrying about every little change and what it might mean and if it is permanent; chemo therapy; the threat of hospital stays, and therefore hospital food; looking into the future and seeing more doctor’s appointments, more chemo, more prescriptions. Bah. I want this to be over. I am not patient, so I don’t want to be a patient.
I’m learning how to be a person in normal life again, and everything takes so much longer! Seriously. Getting dressed takes minutes now instead of seconds. But all is well as this report soon shows…
I’m back in the hospital, but just for 24 hours. I’m receiving a new type of chemo this week which may or may not make me nauseated. So far I’ve been lucky. Let’s pray my luck holds, shall we? This chemo will be given as an outpatient, for 8 days, over two weeks (I get a 3 day break in between). And of course this will be in tandem with the sexy oral chemo 6MP. I’m not very happy to be back at the hospital, but I love the nursing and doctor staff here so much, it makes it tolerable. Plus there is indoor walking space here.
In other news, I can’t believe how much better I feel since going alkaline. I’m a total convert. I wonder, if there is something I can do to bring FOOD to the hospital for the other patients. And of course the big question is, can they learn to love kale for breakfast? I sure do! Read more…
Free Webinar Coming Up May 30 on University of San Francisco’s Online MSN
More from A Patient’s Perspective
About the Author: Brandi Chase wrote her Lymphoblaster blog, the musings of a gal dancing with the demons of Acute Lymphoblastic Leukemia, to chronicle her way through the disease.
A fibercrafter and doodler, Brandi is also Executive Director at Starfall Education, a children's educational web site and publishing company. She currently resides in Utah with her husband, musician and composer Randin Graves and 2 cats, Yuri and Misha.
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