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Sunday, May 2, 2021

Happy Anniversary to Me

Happy Anniversary to Me

As of last month I have finished 7 full years fighting stage 4 cancer. I've been through every type of chemotherapy and biologic immunotherapy available. I've been through two clinical trials with medications that didn't even have names yet. I've had times when I have just felt bad and fatigued. And I've had times when I could hardly get up out of bed. And I've had times when I could not be more than 60 seconds away from an available bathroom.

There was a time that my medication was so hard on me that I woke up one morning unable to get out of bed or walk. I somehow was able to make it from my bed to the bathroom, only a few steps away, by using a walker. I had to be helped outside to the car and to my doctor appointments. It took 5 months of intense training before I was able to put away my walker and my cane and walking stick and walk again.

Last summer I was at a time when I was unable to walk again without a walker through the house and to the car. Once to the doctor's office or hospital I would have to be transferred to a wheelchair and someone from the hospital would have to wheel me through from appointment to appointment or test to test because my 80-year-old mother was not capable of pushing me. I was on oxygen at the same time. Trips were rough because I had to carry so many oxygen tanks with me. I had an oxygen concentrator at home that left me tied to a ball in chain so to speak.

Once before my first clinical trial I was taken off all my drugs. Though very fatigued and unable to do much I was able to take a trip with my parents and my sister to Oklahoma to visit the Ree Drummond, the pioneer woman's ranch in Oklahoma. There was a second time before my second clinical trial that I was able to make a trip up north through New England, to see lighthouses, but specifically to visit four states that were the only states that Mason, the person with me, had not been to in the continental US - finishing up his tour of all 48 lower states.

My last trip, still on medication, was to Houston to visit my parents. I knew that it would be my last visit to Houston in my lifetime, a city that I love very much and had visited very often and had even lived in for a year. It was a very difficult trip. I basically could do nothing, even carry my own suitcase. I had to be helped walking and going up and down stairs. And the driving had to be done for me. I appreciate that I was accompanied by my friend Mason, a very strong helper who is in the national guard and was able to carry my weight by helping me get up out of chairs and carry everything for me; and to have the patience to drive through high flood waters as we had arrived during a hurricane that hit Galveston. Thank God I was with someone who could save my life if needed.

Jeff, an old college friend of 40 years has spent the past 7 years doing yard work for me and knocking down walls in my mobile home so a wheelchair can fit from end to end. My parents have probable depleted any savings they had paying for things that had to be bought, while free labor was provided by Jeff. He missed many weekends with his teenage daughter to help me out. How very Christ-like of him and my family.

Over the past to 3 years there has been a basic countdown of my life expectancy if things do not change. Things have not changed. My last couple of CT scans have been better than any others during the last 6 years. Yet the cancer does not shrink or go away. Still on an unknown timeline I continue to fight and do the best that I can, while having the most positive attitude I can muster. It takes all I can muster. But with help from loved ones I have been able to stay in my one home, where everyone prefers to die.

This year will be the first time in 2 years that I will be able to get on my riding lawn mower and mow my own lawn. Someone else has to put the gas into the tank for me as I cannot lift a gas can. I cannot push mow or weed eat or pull weeds or clean my yard in any other way. There are days that I can cook and there are days that I have to have food brought to me by my sister or parents.

Most 7-year anniversaries aren't that special. But mine is. Because My seven years of fighting have caused me to live twice as long as what was originally expected 7 years ago. Everyone else I knew with stage 4 colon cancer 7 years ago has died or disappeared out of my life.

Some friends and acquaintances have disappeared out of my life as well, some claiming to be too busy, and at least one being honest and saying that my sickness is too much to handle emotionally and that hanging around with other people is more fun than hanging around with me. The pandemic hasn't helped any in that regard either.

Please cheer me on as I continue my fight because I will fight to the very end or until it becomes so painful that I beg to die, which has happened too many people in my family.

And thank you to those who have stuck with me through thick and thin, who have believed in me, who have not let their prejudices get the better of their beliefs in me, and who occasionally cry for me just because they miss being around me so much.

Friday, April 23, 2021

GoFundMe Help

 I have started a new GoFundMe page to help pay for home repairs that I am unable to pay for. My HVAC (heat & air) quit working after 23 years. I also needed an ADA compliant shower installed. Here is the link to the page. I appreciate whatever anyone can do to help.

GoFundMe Page

Thursday, April 8, 2021

Latest CT Scan

 My latest CT scan was another good bad thing. Of the couple dozen cancer nodules in and around my lungs only the 6 largest are measured. One grew by 9mm, and the rest stayed the same. I've never had one grow 9mm in only 6 weeks. 

My 2-year old kidney stone is still there.

I still have moderate size right pleural effusion and right pleural metastasis.

The 2 incisional hernias remain the same.

The 3 degenerative back issues remain the same.

There were "enlargements to left axillary nodes likely secondary to recent moderna vaccination". Speaking of the vaccination. There are no efficacy statistics for people with cancer in their lungs who are on active chemotherapy and immunotherapy. Therefore I may or may not be immune - or anywhere from 0% to 95% immune. Only time will tell if cancer patients like me end up with covid and are hospitalized or die. The oncologists also said that if I do happen to get the virus "it will be a big deal", unlike with normal people who only have a slight case. So get your shots people. You never know who you might pass it on to, not knowing you have it. You could inadvertently kill me or someone you love. 

The worst part is that I live in pain every day to varying degrees. Some days I'm very functional, others I can barely get out of bed. It's also tough being alone all the time. My parents come over and help when they can, but they're 80 years old. My ultra-busy sister also brings a meal from time to time. A friend helps with the yard sometimes, but I like to reserve the riding mower for when I feel good. It's nice to be able to do at least one thing every now and then. 

Otherwise it's just me. Get up, try to make it through the day, go to bed. Eat store bought macaroni salad when I feel bad, maybe fry up a schnitzel if I feel good.

Friday, March 12, 2021

Latest CT Scan

 My latest CT scan is "stable". There has been no growth on the couple dozen cancer nodules in and around my lungs. My present chemo is a repeat from a few years ago. It is not as hard on me as most of the others have been. I haven't had a CT scan of no growth in 4 years, so let's hope it is the beginning of a trend.

Last May I was being told I have maybe only a year to live if nothing else changed and the growth remained constant. I think I just got a delay!

Saturday, February 27, 2021

Cart Returns

 Has anyone noticed that most shopping cart returns at Walmart are so far away from handicapped parking that the handicapped person is not necessarily able to return it there, considering all the walking they had to do all over the store? And then have to walk from the return back to the car with nothing to hold on to? Have you realized there is an unspoken agreement between handicapped persons to make a row of carts in the large striped lines area next to handicapped parking? It's a large enough spot to put a small cart return there if the store managers wanted. This happens at many more places than Walmart; also noticed it at Lowes, Home Depot, Save-a-Lot and lots of other places.

Of course I do not go shopping in stores anymore. Thank God for curbside pickup, because I can't walk through those stores anymore. Cancer is taking that ability away.
But when you feel like complaining about people who don't return carts, please make exceptions for those who can't do it. Instead, go in and ask to speak to the store manager about putting a small cart return in the large yellow striped area right in front of the handicapped parking.
Be a problem-solver, not a complainer.

Friday, February 26, 2021

Who Dropped the Ball?

 Why weren't covid vaccines created for children? Who honestly believed that the virus could enter the nose of an 18 year old and get passed around to their family, but that same virus could not enter the nose of a 13 year old? ...or that the virus would mysteriously die if it entered a child? ...or that children were immune to the virus?

When I heard those things from scientists last spring I thought they were joking. But they went on and didn't believe children could get it or pass it on. Yet they do. There are school systems in nearby counties that do not limit the number of students, do not mask in any way, and just keep going. Some board members were overheard to say that school must not be cancelled because that would ruin basketball playoffs. Some parents had tested positive and didn't tell the school officials, because their children were on sports teams, and the parents didn't want them to miss the games.
So now they've decided that vaccinating 10% of the school population (teachers, staff), will make things safe. Are teachers standing in the bathrooms making sure each child washes up well? Are children snotting all over the inside of their mask or pulling it down and running their arms across their noses? And what about the no-mask schools?
I was under the impression that it takes 70% vaccination to become safe for the population, not 10%.
Why didn't they they think about the children when vaccines were developed? They should have been right up there at the top. And "yes" children are in clinical trials of other drugs all the time. They should have known that football and basketball season were coming up, and it would become necessary to open schools.
I haven't seen my nieces in a year. I've seen my nephews through the front door and waved at them out in the front yard. Why? Because they and I have been left behind. Which means that millions more of "they's and I's" have been left behind. Frankly I worry as much about the children as I do the adults.
Who dropped the ball?

Monday, February 22, 2021

Feelings I have to let out

 Immunocompromised cancer patients have been moved down the list again for the vaccination. The earliest is now April. Last time I was at chemotherapy I came within 5 feet of over 100 people, mostly other patients, but also personnel. I stopped counting at 100. So many of them were so much more frail than me. Truly I'm sad for us all. I'm isolated all alone and only go to doctor appointments, but some of those people HAVE to be around others in between appointments.

I can't wait. Sorry, scratch that. I look forward to being able to get food to-go at a drive thru or get curb-side delivery. I look forward to being able to fill my car with gas all by myself again. It's lobsterfest at Red Lobster this month. I'd love to sit in their parking lot and have my once-a-year lobster meal there.
I'm not being paranoid about those things. But with my compromised immune system, I can't do any of those things until I'm fully vaccinated.
Visitors have to stand on my porch and talk to me through the door. I hate to complain. And I'm well known for not complaining and being ultra positive over the past 7 years of stage 4 cancer and chemo. But it's starting to get even to me now. It's like a race of will I get the shot before I die. I guess in a few months it won't matter anyway, and I'll just go do whatever I want at the very end, if I can time it to happen before becoming bed-ridden.
But, dang, I could eat a sack of crystals right now. And my people know how strange it is for me to say that.

Saturday, January 16, 2021

Latest Test Results

The latest test results were not good at all. Actually they were bad. I got a call from the doctor office to come in early, because the oncologist wanted to see me personally rather than have me see his assistant. I usually rotate every other time and have gotten test results from the assistant often. So I knew it was bad all the way there.

He said the CT scan showed significant growth in the cancer nodules. They are also becoming more dense and solid. We went through my options. I have been through every drug known to work on my type of cancer already. The current medication was the last resort. So we are now looking at:

  1. Contacting Sarah Cannon Research Center to find out if there are any clinical trials I am a fit for. The doctor was not hopeful on this, because clinical trials have been significantly reduced so the scientists could work on coming up with a covid-19 vaccine. 
  2. Go back to some of the chemo drugs I have been on before that didn't work. There are no statistics on doing that, so there isn't much hope there either. It's pulling straws.
I looked up current clinical trials at Sarah Cannon. There are some for colon cancer patients with certain types of cancer cells. Some of them include half of the group getting a placebo. That scares me. I could possibly not be on any medication at all.

Of all the previous drugs I have used the one most desirable is Oxaliplatin. That is the drug that gave me sudden neuropathy. Another dose of that is likely to put me in a wheelchair. So the doctor took that one off the table. He wants to try some of the ones that caused the least amount of negative/harsh side effects, which would be the Xeloda pills and Avastin infusions. That was what I was on the end of 2017-October 2018. 

I think we are looking at comfort and quality of life for my time remaining. I asked if I could expect to live another 3 or 4 months. He said "I believe so, but I can't say for sure." So there it is. 

CT Results

  1. findings are somewhat worse.
  2. multiple bilateral pulmonary metastasis are larger and more dense/solid.
  3. moderate-sized malignant right pleural effusion is slightly larger.
  4. Numerous right-sided pleural metastasis are slightly larger.
  5. partial atelectasis right lower lobe adjacent to the effusion remains.
  6. multiple anterior abdominal wall hernias remain.
MRI Results
  1. Moderate Right foraminal stenosis at the T11-12
  2. Mild central stenosis at L2-3. Right lateral recess stenosis. Mild right foraminal stenosis. Moderate facet hypertrophy
  3. Mild degenerative change facet joints L3-4
  4. Mild bulge L4-5 without central stenosis. Mild left foraminal stenosis; there is small left extraforaminal protrusion at L4-5 with effacement inferior aspect of the exiting left L4 root within the left neural foramen. Left posterior lateral annular fissure. Mild facet hypertrophy.
  5. Mild bulge is eccentric to the right L5-S1 without central stenosis. Right lateral and mild right foraminal stenosis. Mild-moderate bilateral facet hypertrophy.
  6. Moderate sized right pleural effusion

Saturday, January 9, 2021

CT Time Again

 I just had another CT scan this week and eagerly await the results next week. It's like a nail-biting few days every time.

My last scan was just like most of the others, a slight increase in all the cancer. But I guess it's better than what happened last spring when all the sudden the number of nodules doubled and now I have them on the inside and outside of my lungs. I don't know how many there are total. The CT scan results always give me measurements on three or four. But I think there are probably 20 or so.

This stivarga isn't all bad. I do chemo everyday for 3 weeks, then I get a week off. During the three weeks my fatigue builds up until finally I just can hardly do anything. then the first couple of days of my week off I still feel really bad and nauseous. As that week goes on I end up with three or four days of feeling pretty good. That's when I usually am able to cook, get my laundry done, and catch up on dishes. 

The MRI showed that I don't have cancer in my spine. That was the good news. The bad news is that I have degeneration of my spine. There are a couple of different things named, long words that I can't remember. But the gist of it is my I have degenerative problems in my spine. My oncologist says I'm too sick to really go under the knife and have things done. It would be super difficult on me to recover, and I would be back in a wheelchair like I was last summer. I hated the wheelchair. I hated being on a walker. I hated the constant lung biopsies last summer. And I hated having a thoracentesis every 7 days. I think I'll just stick with the back going downhill.

The one difference now is that I have pain all the time. I never had that before. The pain is from cancer and neurological issues and degeneration of my spine. So it's mostly in my back and leg and feet. It makes it hard to walk. And sometimes at night I wake up feeling like someone is stabbing me in the leg.

So I'll keep my finger crossed and hope for the miracle that my cancer shrinks, which it never does and never has. I'll also hope for the second best, that nothing grew, which never happens. but I guess I'll be satisfied if he just says it grew no more than usual. It's my slow walk to the death doors. But I guess I keep in mind that death is part of life. I can't do much to enjoy life anymore but at least I have my comfortable chairs and plenty of TV and Roku. I'm still so happy that my parents have moved back to town from Houston. So at least I get some company several times a week, because they don't see anybody else but me.