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Author Topic: Living life with the big C  (Read 820 times)

Kellie in OR

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Living life with the big C
« on: March 19, 2014, 10:45:37 am »

I'm going to copy and past some things from facebook to get caught up.



Timeline of my Cancer diagnosis.....

May 27, 2013 at 3:40pm


I have been posting about my cancer diagnosis since the beginning, not intentionally, it just happened so fast. Once it was out there people wanted to know more, and to be kept updated, so I've kept posting. I'm not a super shy or private person, even though I live in the country and rarely socialize away from home. Over the years I've made some great friends and acquaintances through work, horse events, selling saddles, and the GHS internet community. So rather than drop off the earth and share this journey of my life only with a 1/2 dozen close friends and family members, I thought I'd just go about posting like always do. About things I'm doing, enjoying, experiencing, and mostly what amuses me.  To understand how quick this happened, here it is....


In March of 2013 I felt the best I have felt in years. My decade of stomach trouble was finally diagnosed as Gluten Intolerance. I'd changed my diet to gluten free the end of December 2012. I had more energy and was busier than ever, and had lost 15 pounds in three months. The end of March I turned 44 years old, got two goats for my birthday, and set out on daily hikes to find wild flowers, and to get in shape for my planned trip to Iceland in July. Quite simply, life was good in every way.


The beginning of April I noticed that when I would bend bend over to do something, like pick out horse hooves, trim goat feet, my head would pound, I'd get dizzy and may face would turn bright red. Since there were no other symptoms, and I felt great, I didn't think much of it. I had my annual physical in Sept of 2012, and more tests (bloodwork by both) run by the gastro doc in December, so I didn't suspect anything serious was wrong with me. 

The middle of April I started getting short of breath at the top of hills. I attributed it to allergies since the tree pollen was at super high levels. But it was getting annoying, and nearly passing out at the top of the stairs while doing tier checks at work was not safe for me or my co-workers. So I made a doctors appointment. My BP, oxygen sat, and pulse was perfect, unless I exerted myself. So the doc also figured it must be allergies since everything, including my lungs, sounded good.


A couple weeks of using allergy meds, sudaphed and an inhaler, and I was still I was not feeling better.  In fact, I then began having headaches, and I was super tired all the time. So I called the doctor. She ordered me up a chest ex-ray. That was on May 9th. From those chest ex-rays I was diagnosed with pneumonia and started on antibiotics. 

I took the 5 days of Z-Pac antibiotics and felt no better, in fact I began having other symptoms, so I called the doctor. On May 14th the doctor put me on another round of antibiotics for my pneumonia, and referred me to the Asthma and allergy center to see an allergy specialist. It was thought that I was having allergies because now my face was swelling. It was so puffy in the mornings that my eyes would barely open. I spent a couple days fighting with insurance about seeing the allergy specialist, they wouldn't not cover it.


Finally on the morning of May 16th I felt so horrible, so tired, so puffed up, so hard to breathe, so weak and light headed that I drove myself to Urgent Care. When I got into Urgent Care they took me right back since I was having trouble breathing. The Nurse Practitioner that came to see me thought I was hyperventilating because I was upset, she wouldn't listen to me and then she called for someone to bring her a paper bag. I said "Look lady, I'm not a drug seeking hypochondriac, nor an overly emotional girl. I have pneumonia that is not getting better. It feel like there is a ligature tied around my neck. I truly can't breathe very well, and if you try and put a bag on my head, I will punch you."  And she said said "Ok, we're done, get out." And with that she walked out and I was left sitting with a Med Aide who had no idea what to do. Luckily the med aid continued to fill out the paperwork, who gave it to the nurse practitioner who decided to humor me with a new chest ex-ray. These ex-rays showed a fist sized mass in my lung. The NP sent it to be seen by a pulmonary doctor who ordered me to have a Cat Scan. This had to be authorized by insurance, and I had to have fasted for a few hours, so I was sent home.

I returned to the Cottage Grove Hospital the afternoon of May 16th and had the CT scan. The results were told to me by the same Nurse Practitioner who had tried to put a bag on may face, the same one I had threatened to punch. Not an important detail in this story, but one that I find amusing for some reason. She told me that I was suffering from **Superior Vena Cava Syndrome** due to the mass in my lung, and that the mass in my lung may be cancer. As I tried to process this information,  the room began to spin and my life flashed before my eyes. Yes, all that stuff really does happens when your world is turned upside down. Then the nurse practitioner apologized profusely for being rude, she really did feel bad for that, then she wrapped me up in a big hug as I stood there in shock. Then she sent me to Eugene to report to the River Bend ER where I would be met by an Oncologist by the name of Doctor Sharman. Luckily my husband Todd was with me for that appointment, I'm not sure I could have driven myself. I was admitted to River Bend, given a room, an IV with some type of cortisone, and spoke with the doctor. He was better able to explain to me about my restricted blood flow and what was going on, none of it was good. I spent a miserable and sleepless in the hospital, and that morning started tests and treatment.


The morning of May 17th I was mapped, tattooed, and given my first dose of radiation. Then I had an MRI of my head, then I had a biopsy pulled. They told me that with just the initial look at the biopsy they could tell it was cancer, just not what type, more complete results will take time. I was released to come home that afternoon.


Since the 17th I have had five more radiation treatments, for a total of six. They don't hurt, they only take a few minutes, but they do leave me tired. I had hoped I would be one of the few people who would feel nearly instant results with radiation and that the mass would shrink, my circulation would be restored, and my energy would be back to normal with no more feeling of being light headed. I'm not that lucky tho, so far I don't feel any better, maybe slightly worse. I still have swelling in my face, and now I have fluid in my chest and abdomen. It is a fairly common side effect from radiation due to dieing cells. Drat.


Sadly I won't be ale to go back to work like I had planned. Since this thing is non-surgical, I was going to work through treatment as much as possible so that if I ever do have to have surgery, I could use my medical leave then. But this thing, this alien in my chest, is not playing by my rules.

Physically, I am tired, so I rest a lot. I am able to take care of my animals and do all the easy chores, I just take my time. I avoid bending over and/or lifting heavy things as it does give me a headache and makes me want to pass out. I feel full all the time, like there is no room for food. I have to make myself eat. From the fluid retention I look like I have gained weight, but actually I have lost. It is still hard to breathe, so I walk slow and avoid steep hills. But I will walk every day as long as my legs work. I can still ride my horse, but it is nice to have help with the grooming and saddling as the dust makes me cough (which hurts) and lifting the saddle is hard. But I will ride as long as I can still sit a horse without toppling off.


Mentally, I am ready for battle. Bring it on, I will kill it.

Emotionally, it is a roller coaster. I can run through them all in just a moment.  It is completely possible for me to be laughing hysterically one minute, bawling like a baby the next, then giggling like a nut the next. I don't know if this is normal, it is what it is, and I have never really been normal....so why try now. Right :) 

Tomorrow, May 28th I resume radiation after three days off. I also meet with Dr Sharman to get MRI and biopsy reports to plan our next attack. I assume I will have to begin some form of chemotherapy.

So that is it in a nutshell.

http://lungcancer.about.com/od/livingwithlungcancer/a/svcsyndrome.htmÂ
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Kellie in OR

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Re: Living life with the big C
« Reply #1 on: April 01, 2014, 11:28:27 am »

Yesterday Jet died. A valve in his heart ruptured and there was nothing that could be done to save him. He was only 20 years old. He was my first Tennessee Walker and taught me so very much.

I had a follow-up with the neurologist yesterday. He told me I could quit going to physical therapy, if I haven't gotten better by now, I'm not going to. I am better than I was, but I am still battling vertigo and having no ocular stabilizer drives me crazy and gives me a head ache. Last week I started seeing light globes float across my eyes. My eyes were getting more and more itchy and irritated every day. Saturday I woke up and everything was cloudy, like I was looking through an old dirty window pane. The doctor found that my corneas are damaged and it is consistent with a not very common side effect from my cancer medication Tarceva. So my options are to keep taking my medication and live but probably go blind OR quit the medication, keep my eyesight but die of cancer. 

I'm so sad and tired. I fight and fight and try to stay positive. But with every little bit of good news I get, I am slammed with twice as much bad news. I don't know why it seems I am destined to live a very short life, but the odd don't seem to be in my favor to expect any more.
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Kellie in OR

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Re: Living life with the big C
« Reply #2 on: April 21, 2014, 01:00:44 pm »

Omigoshhh!!! I just bought plane tickets to spend a week in South Dakota the end of June. Seeing friends I traveled Iceland with, finally meeting other GHS cyber friends and riding horses and hiking in the Black Hills. WooHoo!!!!

UPDATE: I had another eye appointment yesterday with a different doctor. It was a much, MUCH better experience than the last one. He was very nice and listened to my questions and concerns. He did a much more thorough exam with additional tests to take digital mapping images of my eye surface so we could establish a baseline to keep an eye on what effects my chemo medication will continue to have (or not have) on my eyes. For now I continue the eye drops, but begin to taper down the amount, stay on the 1/2 dose of chemo medication, and the beginning of June I have a CAT scan to see what the cancer is up to, and we will adjust from there.

 I'm feeling pretty good, just not yet as strong as I want to be, I get tired easily and my balance is still wonky due to my damaged & deaf right ear. But my vision has gotten almost back to normal, I'm eating everything that doesn't try and eat me first, and I'm back to driving myself short distances. I'm riding my horse, driving my ponies, hiking with the goats, and looking forward to enjoying the summer.

My new baby goat was born last week. I am getting him from the same breeder I got Herc & Dale. He is 1/2 Oberhasli and 1/2 Alpine. He is my favorite color and looks like a Kiger Mustang. I wanted to bottle raise him, but I just don't have the energy yet. Plus the breeder told me bottle raised goats usually end up demanding and pushy. Herc and Dale were doe raised and plenty trusting and tame since the breeders kids play with them. I have named him Sven after the silly reindeer character in the Disney movie Frozen. I am still breaking the news to my husband. Sven will be 12 weeks old and ready to be weaned about the same time I get home from SD.

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Kellie in OR

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Re: Living life with the big C
« Reply #3 on: May 07, 2014, 02:03:21 pm »

UPDATE: Yesterday I had a very interesting appointment with Tina Kaczor, the Naturopath oncologist. I had blood pulled last week by my GP because of my fatigue and we had not only the blood panels checked, but also nutrition and other things. Tina went over the labs and explained that I am low in almost everything, but just borderline lows. So no one thing is low enough for a doctor to do anything. As a naturopath she looks at the entire picture and added it all up and thinks I am living the perfect storm to be hit with debilitating fatigue. Fatigue causing things I am low in is vitamins D & B's, low thyroid function, kidneys only functioning at about 60%, which means my adrenal glands aren't working well either. Since I was anemic for so long, the vast majority of my red blood cells are new babies. Young blood cells don't hold, move and deliver oxygen efficiently like mature blood cells do. Combine all of that with the fact that I am on a daily chemo pill that causes fatigue, it is amazing that I can move at all. She sent me home with medication and supplement that should help. Some of it can only be fixed with more time to heal. Chemo really kicked my butt  :'(
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Kellie in OR

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Re: Living life with the big C
« Reply #4 on: May 13, 2014, 10:03:45 am »

UPDATE: My scan results show that I have even less cancer this month than last, and that is with me on only 1/2 a dose of the cancer drug Tarceva. My doctor is reluctant to use the word "remission", but says he now considers my cancer to be "stable" and not actively growing.
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Kellie in OR

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Re: Living life with the big C
« Reply #5 on: May 22, 2014, 10:26:17 pm »

I'm getting used to being bald. It fact it, is starting to annoy me now that it is almost a 1/2 inch long.  ;D



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Kellie in OR

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Re: Living life with the big C
« Reply #6 on: July 23, 2015, 08:27:04 am »

It has been way too long since I have posted here. It has been a roller coaster ride for a long time. I finally got the proper genetic testing and they found I have the EGFR mutation so I was able to quit chemo and go on a targeted therapy pill called Tarceva. That worked really well for abut 10 months. When that quit working I went to on an immunotherapy clinical trial for three months and they determined it was not working. During this time the cancer spread to my liver. So I went through a battery of test to get on another clinical trail and now they have found that the cancer has spread to my brain. Today I have my first Full Brain Radiation. But I'm happy to say I'm STILL ALIVE!!!
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Kellie in OR

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Re: Living life with the big C
« Reply #7 on: July 23, 2015, 08:28:31 am »

UPDATE: So today was a roller coaster ride of emotions and information, some good, some bad. I had hoped I would be coming home with a new prescription to start the targeted therapy clinical trial, unfortunately there is a bump in the road that has a to be addressed first.
First the really good news: The cancer in my lungs and liver show NO SIGNIFICANT GROWTH in three months with NO treatment.
The bad news is that my cancer has spread to my brain. This is what prevents me from participating in the clinical trial at this time. The only treatment for this is brain radiation. I see a radiation oncologist on wednesday to get my 3rd opinion and will more than likely start treatment ASAP. While this is bad news, it is not the end of my story. The doctors assured me that while I have cancer IN my brain, I DO NOT have brain cancer. The cancer in my brain is the same cancer that is in my lungs and that type is much more vulnerable to radiation than actual brain cancer. It is radiation that OBLITERATED the fist sized tumor wrapped around my vena cava artery in 2013. It killed it so well that they could no longer get a biopsy of viable tissue. I will receive 10 radiation treatments daily (except weekends), then 30 days after that I will have another brain scan. If all goes well I will then be able to do the clinical trial, all the other test will still be current and I won't have to start over. It is expected that I will have some side effects such as headaches & nausea. Of course there are other potential side effects, but those are much less common. I assumed I would have to cancel my trip to Iceland, but the doctors think I should still be able to go. Crossing my fingers they are right.
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Kellie in OR

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Re: Living life with the big C
« Reply #8 on: July 23, 2015, 08:32:44 am »

Back from my appointment. I feel much better after talking with the radiation oncologist. He is very nice, down to earth and realist that is very hopeful. He answered all my questions and more. He told me what all my options are, the pros and cons and why. I've decided to go ahead with the whole brain radiation. The other options are 1. Do nothing and within a couple months I will be having seizures, extreme headaches and a rapid decline in quality of life followed by a painful death: NO THANK YOU. 2. Gamma knife treatment: Not a viable option for me as I have one smallish to medium tumor and 6 tiny barely visible nodules spread out all over. There are probably others that are there, but not quite yet visible. So GKT could be done, but then new spots are more than likely going to crop up and I would have to have it done repeatedly, which would again delay the clinical trial. GKT is nothing special, it is radiation that is concentrated in one area. 3. Put off the treatment, go on massive steroids and hope that keeps the cancer stable enough for me to do my trip, then get 4th & 5th opinions. Spending lots of money to learn the same thing is all that is available no matter where I go. This IS the standard of care for cancer in the brain. Doing this would also further delay getting into the clinical trial. So I'm ready!
I got my Hannibal Lector/Freddy type mask made. It is a all mesh with four places to bolt be down to the table. It was all warm soft and flexible and was basically smashed and stretched down and around my face until it fit to the table. Then the nose was pulled up and away so I can breath better. I had to lay still for about 10 minutes while it dried and hardened. The only annoying part is that if I open my eyes my lashes brush on the mask. My first super power zapping session is tomorrow afternoon.
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