Sharon's Final Month

On June 27th Sharon got an MRI on her hip from which she was feeling pain ever since the trip to Panama. Her primary care gave her the results that afternoon that the cancer had metastasized through the pelvic/hip area. It appeared that she possibly had bursitis, a tear, a fracture, or all of the above. 

On June 29th Sharon went to the oncologist in the morning to get preliminary treatment so she could start radiation treatments on Monday. Later that day she had an appointment with her orthopedic surgeon and he ruled out bursitis, breakage, and tearing. It was definitely cancer causing the pain. The pain was so intense, Sharon felt ready to die that day. At this point she was still using the cane she bought on her New York trip to help her get around, but on this day we started pushing her around in a wheelchair. 

Saturday the 30th, she was feeling much better and wanted to go around the block. She enjoyed having her grandchildren, Charlotte and Jack take turns pushing her around the block.

Sunday July 1st, Sharon insisted on going to church despite her pain. She knew this would be her last time to physically be at church and to bear her testimony. In the LDS Church, the first Sunday of every month, members volunteer to share their testimony of Jesus Christ and what they know to be true. Sharon was devout and enjoyed sharing her testimony regularly. On this day, Charlotte pushed the wheelchair so Sharon could speak to the congregation. It was a special, heart-felt moment for the family.

On the evening of the 4th of July, Sharon’s pain level was too high so we went to the ER for treatment. With her progression of pain and deteriorating mobility, she remained in a comfy chair in her bedroom most of the time. 

On July 6, hospice began their services. Sharon's appetite slowed to just a few bites of something pleasurable, particularly some birthday crumb cake for our twins' special day. Our son, Nate, flew out from Texas to see her for a few days. We held a Sacrament meeting in our home on July 8th with Sharon so the family could share their loving thoughts and memories with her. 

On the 9th, Monday night, around midnight we noticed another change in her. With all the boys, we were able to give her a blessing. The boys had an opportunity to express their love to their mother.
Later that week, a visit from Sharon’s sister, Maryanne, gave Sharon comfort. Sunday came around and in Sharon’s considerate nature, she urged me to go to Church but I couldn’t leave her side.

During her last week, Sharon progressively moved from her chair in the bedroom to a hospital air bed in the front living room. Immediately we could see she was more comfortable. I built her a curtain rod so she could have privacy when needed. 

As the week progressed, her naps got longer and her breaths deepened.
On Friday the 20th, the hospice nurses came to check her vitals. We learned her lung capacity was at 98% with no sign of diminished lung capacity from the cancer. Meaning, the Tomotherapy succeeded at killing off the cancer in her lungs before it spread to her hip.
That evening we watched her closely with both twins here to help care for her. At 1:35am (July 21st) Sharon began to take her last breath when she passed away peacefully.

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Sharon always knew she wanted to donate her body to science. She has been taken to UCI where they can keep her body for up to 6 years. Afterwhich they will cremate her and spread her ashes at sea.

The Memorial for Sharon will be held on August 18th 2018, 3:00pm at 17130 Bastanchury Road, Yorba Linda CA 92886. Babysitting provided in the Nursery Room for small children. Per Sharon's special request, there will be a family-friendly party behind the church building at 5:00pm. 

In closing thoughts regarding Tomotherapy-
We learned Chemotherapy is not the only "cure." Tomotherapy DID kill the cancer in Sharon's lung. It is not yet a well-known option to kill cancer because of the lack of understanding since it's fairly new. Sharon's case will be noted in the case to make Tomotherapy radiation a more widespread alternative. This route was not as harsh on the body because she did not lose hair or vomit. Her immune system was not destroyed as it would be with chemotherapy. Sharon chose this route based off her research, prayer, and understanding of her prognosis.In her case, she wanted to have the highest quality of life given the amount of time she was given. Choosing this route, her doctors were shocked by her lack of complications and how healthy her skin and immune system were working up to her last days of life.

 Thank you to all those who have prayed for Sharon and helped us through this process.
-The Edwards Family

New York - June 2018

I wanted to go to the Statue of Liberty and Ellis Island. I got to visualize my grandma, Irma Senko, at 9 years old coming from Slovakia, seeing New York. I needed Kleenex. On Ellis Island, I got to walk where she walked. I got to see photos of immigrants like my grandparents. They came on the busiest day ever. I needed more Kleenex. I found them on the ship's manifest. More Kleenex. It was more moving than I thought it would be. Three of my dear friends went and we stayed with a fourth. We had a 4 day long weekend. It was AMAZING!
More to come.... next post.

Panama Photos

Just a few Panama Photos

Just got on board.

Panama Canal Continental Divide

Approaching the locks

Going through the locks

On small ferry boat inside the locks

Beach in Costa Rica

Mayan Ruins in Guatemala

Mayan Ruins

Entering Los Angeles Harbor

Disembarking

Good bye ship!!!

Month One

Time For Some Fun!
You can contact me at smedwards80@gmail.com

It has been a long time since a post, so this is catch up time. We went on a CRUISE!! First time ever. We left Ft. Lauderdale, Florida and cruised through the Panama Canal and ended in Los Angeles. A floating resort for 15 wonderful days with several excursions. We stopped in Aruba, Columbia, Panama, Costa Rica, and Guatemala. I would recommend it to anyone, and would get back on another ship in a heartbeat. I did not know that there are many daily activities on the ship for you to attend or not. Some days we were busy, some days we just lounged around. Two regular pools, one splash pool, 6 hot tubs and a zillion deck chairs. And food. My favorite?? Almond Croissants only to be found at the International Cafe in the morning. Sometimes gone by 9:00. If I was up at 6:00 I would wander over get one or two and take them back to our cabin. The crew was very accommodating. They would wrap the plate in plastic!!!

So why Panama as the first "Bucket List " item ? It just so happens that Bob was born there. Yep! His Grandpa Straus decided to move the family their when Bob's mom was about 6, to work for the U.S. government in the Canal Zone. He was an engineer driving one of the Mules. (Electric engines that keep the ships centered in the locks) Mom grew up there, got married there, then moved to Utah. After a while, Bob's dad decided to move to California. As they were expecting Bob at the time, and anyone in Grandpa's household would be covered medically, his mom went "home" to her parents in Panama, and voila!! Bob was born there. After 6 months he was able to fly to California and had never been back. It was an amazing trip. Photos in the next post.

It has been a bit over a month since my last Tomo treatment. I am feeling quite well. Other than the fact that I have tweaked my right hip, and left side of my back. This has nothing to do with my cancer, and everything to do with me trying to live life! I have had acupuncture, chiropractic adjustment, and extreme massage. It is all working, but not as fast as I would like!! My patch of "suntan" on my back never was red, but it did peel. If that was the worst side effect of my treatments, OK!. I cough occasionally, but very insignificant. I was taking the cough med. once a day instead of 3 times, and haven't taken any for over a week.

I visited the Radiation Oncologist May 11 for a one month check-up. Weight, blood pressure, temperature. How are you feeling? How is your cough? How is your swallowing? How is your appetite? Because radiation can still be working 1-2 months after treatment ends, and because there can still be inflammation, they will not do a scan until 3 months to get an accurate picture. So, we will wait.

Next Chapter

The Last Treatment
You can contact me at smedwards80@gmail.com

Before I start about me, let me say how wonderful all the staff at 21st Century Radiation is. In the beginning, they made authorizations and test scheduling happen with unbelievable speed. Each day there were smiles, kindness, professionalism and comedic comments. I was able to bring a CD of hymns to listen to so I could go to my happy place and think of the love, the many blessings and tender mercies I have experienced.

Today was my last treatment. It was supposed to be Monday, but last week when I had a CT check, there was not enough shrinkage to do more of a pinpoint treatment on the remaining days, so they just gave me extra days without changing the amount. Flexibility is a good thing.

It will be interesting having to think about my meals now. For 7 weeks my breakfast has been the same thing. I didn't have to think much about my one "Real Meal" as twice a week people from church brought a dinner. There was always enough for at least two days, sometimes more.  For the rest of the day, I fasted. How many ways can you fix plain water?!? Though I daily thought of my previous Ketogenic diet, I just couldn't do it. I am not sure what direction will be next. More prayers for direction and guidance.

As far as physically, so far the journey has been pretty good! I was told I may have some tanning or pink sunburning at the treatment site. There is a patch of tanning on my back about 5" x 5" a smaller area on my front. A sore throat was possible and may need numbing medication. Nope, but on some days if my posture wasn't perfect, and if I swallowed a big bite, it felt as if a pill went down sideways and got a bit stuck. Not for every bite. I just had to be careful. Coughing could be a problem. It was, but I was coughing even before treatment started.. For awhile if I talked, I coughed. Sometimes a lot. I started taking Tessalon Pereles it has helped so much that instead of taking it 3 times a day, I can take it once for two days, then skip two days. Tiredness compounding as time goes on. I did not experience debilitating tiredness. I did need an afternoon nap. I tried not to over do it, but I did pretty much what I wanted, even yard work and washing my car. I have wondered how much had to do with the radiation itself, or my most interesting diet. I have read in several places that fasting actually helps your normal cells be stronger and the cancer cells be weaker for treatments. That may have helped with everything also.

Now we play the waiting game. Radiation can keep working for some time after treatment ends. If you want to know more go to:  https://www.oncolink.org/frequently-asked-questions/cancer-treatments/radiation-therapy/how-long-after-radiation-can-tumor-keep-shrinking I will have a follow up appointment in a month, then schedule a CT to see how things are going. I will do my best to try to forget about it for a month. It's time to start working on the "Bucket List", but that will have to be in another post!! Stay tuned......

Half Way

Shrinkage
You can contact me at smedwards80@gmail.com

Three weeks of treatment finished, three more to go. Many have asked how I feel. This past week was difficult but has nothing to do with my cancer!! Last Tuesday I tweaked my back bending over the dishwasher incorrectly. Please everyone remember to engage your core muscles, and bend your knees. The back is better, but not best yet. Arrgh!

The medication for my cough has helped a great deal. I can talk again and only cough occassionally.

Last Monday the doctor said my tumor had gotten a little smaller. On Friday, the Tech said there was substantial shrinkage. What does that mean? And, what is the difference? Today, I saw the doctor again and got to ask questions. She showed me several CT slice pictures with before treatment, and as of today. My unprofessional eyes could definitely see some shrinkage on one of the slices, but substantial shrinkage on a different slice. Any shrinkage is good shrinkage!

Yippee!!

Second Week Finished and Ketogenic Info!!       
You can contact me at smedwards80@gmail.com

I have completed two weeks of treatment. Yippee! That is 2/6 or 1/3 or 12/33 (days). It was just nice to get to Friday and be able to eat regular meals without fasting. Three meals on Saturday (today) I had my treatment times all the same this week. Being able to plan  eating and fasting and resting at the same time each day helped a lot. I felt much better this week than last week. Yippee!

My cough is not painful this week, another Yippee!  But, I do cough more if I talk. So, I try to write, type or text. One day Andre' took my notepad and wrote his reply just for fun. We're all about fun. The Radiatiion Oncologist gave me a prescription for "Tessalon Pereles" for my cough. We will give it a few days to see if it helps.

A dear friend, Sharla, sent me a link to a TEDx TALK on the Ketogenic diet. I thought it was amazing. So much understandable information in one short talk! If you would like to learn more about the diet, I can only say, "Watch it, Watch it, and Share it".

https://www.youtube.com/watch?v=zYcjnGi5cOs

P.S. Whoever left the Hyacinth on my doorstep, thanks so much. Another Yipee!

Small Things

One Week Done

The first Saturday of every month my doctor, Donna Frisch, has "Walking with the doctor, at Canyon High School". We walk for an hour, try not talk about medical issues, and just have a nice time.  I went late. I knew I couldn't walk the whole hour, but my Doc. is not just a Doc., I consider her a friend. Since I have finished one week of treatment, Dr. took a photo.

Saturday was pretty good. Sunday, tough. If I talked, I coughed a lot. And, most of the time I would get a railroad spike stabbing pain in the back. Sometimes the front. Right side. Radiation doc. said the tumor and lung have no nerves. So it is the chest wall that has pain. Today has some pain, but much better.

I give thanks for small things. 1/6 of the treatment finished, and a little less pain when coughing.

Saturday, March 3, 2018

Adjusting

Specifics

I am trying to adjust from a Ketogenic diet, to a fasting, sugar, normal/Ketogenic diet. Actually, my stomach is trying to adjust. Why am I doing this? Read on.

I know that God has a plan, and can give us direction. He doesn't reveal his plan all at once, but will direct us to a "best" path if we listen carefully. A brother at church approached me one day with much insistence regarding treatment his father (Carl) did for his cancer. I felt as if he was supposed to tell me, and I was supposed to listen, investigate, and consider.

I have read in several places that fasting before Chemo actually helps normal body cells and weakens cancer cells. Carl did fasting. Though I am not having "Chemo" I am fasting before my Tomo treatments. Can't hurt might help. Carl, who is also a scientist and physicist did a lot of cancer research. His conclusion is that cancer cells are most vulnerable when they split.

Now you have to pay attention here. When I had the Pet Scan in December I had to make the cancer cells hungry, then feed them sugar so the scan could track how aggressively they were feeding. So, if I fast, then feed them sugar, they will go spaz (my version of them being aggressive and splitting) while I am getting a treatment. Hopefully this will take out more cancer cells. Again, can't hurt, might help. My Radiation Oncologist said that Chemo also makes the cancer cells more receptive to the Tomo treatments, but I really do not feel Chemo is for me. Here's hoping sugar will make them more receptive.

So, I fast, eat a meal of sugary stuff about 1 1/2  hours before treatment, let it digest for awhile then eat a normal meal then repeat. Today was the best day so far for my stomach, BUT it is only day 5 of 33. So if you need anything to pray for, pray for strength, and a happy stomach!

Oh, what kind of sugary stuff you ask? Marshmallows (they have to be toasted), orange juice because the sugar is absorbed quickly, I started with Brach's orange slices,  switched to  chocolate "m & m's"(but I think I have to switch again.) I believe I have allergies to chocolate! (Extreme runny nose which causes much coughing.)  And a slice of lemonade pie. This is all from what Carl did. Whatever great things happen, he and God get the credit.

End & Beginning

The End, and The Beginning

I gave my two week notice at work, and this would have been my last week. But, on Sunday afternoon my boss called and said I didn't have to come in anymore. I did have to go in to collect my belongings, but, that was the end.

Today, Thursday, February 22, 2018 @ 2:00 p.m. I had my first Tomotherapy treatment. We took pictures. After getting in my "stabilizing shell", Bob had to leave the room. We don't want any radiation "Beamlets" getting him. Treatment took about 15 minutes. I could hear the Beamlets pulsing around and around my body. I would rather have Bones from Star Trek give me some kind of pill (see Star Trek IV movie The Voyage Home) But, I have also been waiting for a food replicator. Maybe someday.

 
My stabilizing shell. My hands hold the two white posts.

 


Ready to "Go In" the tube. the table is flat and hard.

Busy

(FYI - somehow you can leave comments. At bottom of post, I think click on comments/no comments.)

Never a Dull Moment.

This week was busy. Preparing for Tomotherapy.

Monday, pick up two bottles of barium stuff to drink for the abdominal CT on Tuesday. AND, hydrate!

Tuesday, drink the stuff, (yuck, and yuck), get scanned, get a dye injection while still on the table for the thorax CT, then get scanned again. More hydration to clear the dye.

Wednesday, worked the afternoon shift training our new office person. I think I talked for 3 hours straight. More talking usually means more coughing.

Thursday, 8:15 a.m. phone call "Can you come in now for a mapping scan?" Sure. They put my head and arms (above my head) in a foam thing that sets. I have to be in it to hold me in place for treatments. It was interesting trying to get out after it was hard. They also put three tattoo dots on me for positioning. They are about the size of a pin head. THAT HURT! What are people thinking when they get real tattoos? Later another dye injection for a brain MRI. More hydration to clear the dye. (Yes I do have a brain, and no cancer there!!) Last stop, the Lymphatic massage.

Friday after work I had time to go to Mary's office to lie on the Migun Massage Bed. I got to relax!

Hard Stuff & Decisions

How Do I Choose?

What do I know?? A little bit about a lot of things, maybe a lot about a few things, but in the world of cancer, not enough.

Mary, (my holistic doctor & friend) has been instrumental in improving my knowledge. She has given me books, websites, etc. and been there just to talk. There is so much information. So I read, take notes, watch videos, talk to people, reread things, take more notes, and pray. Sometimes when it all feels like mush, I have to put the books down to let my brain rest.

After exploring options and lots of prayer, I decided to go on a Ketogenic Diet while still trying to figure out what I was supposed to do. It is natural, and works against cancer. It is not easy, but what is?

Sometimes it feels as if I take 1 step forward and 3 steps back. Depending who I talk to, there are pros and cons to everything. But, many have said, "It has to be right for you." That again leads to: prayer, scripture reading, listening to hymns, and going to the temple.

I have finally decided on something called Tomotherapy.

Christmas and More

Christmas and More

Dec. 22, 2017 - January 2018

Still reeling from the surgeon's appointment we hopped on the plane to San Antonio, Texas. Our son lives there. Our grandson was turning 12 and wanted us to be there for his church priesthood ordination as a Deacon. Of course! We stayed for Christmas, got to visit with my brother from Ohio who was visiting his daughter in Austin, and visited a dear friend outside of Dallas. We saw a reenactment of the "Cattle Drives" in Fort Worth.

 

I was trying to ignore the fact that I had a mutant tumor in my chest. (The Pulmonologist said it is cells that have mutated. So we used that when having a "Family talk" with the grandkids that stay with us almost every weekend. We explained mutation with the "Teenage Mutant Ninja Turtles". One decided that the tumor on the x-ray looked like a turtle!)

As Bob (my husband) and I had colds, I did very little of the planned cancer reading. I didn't care much because of the cold, but when I thought about cancer, I cared a lot. When we got back home, I felt so rotten one day that I said, "God, I know I could be dying of cancer, but just take me now!!"  Obviously, He didn't!!

How it began

The Beginning,  I'm Healthy Right?

June, 2017

I went for a basic routine check-up. As I hadn't had a bone density test in awhile, I need to have one.

I have Osteoporosis!! What to do? Research! Change my diet, take out more junk, add more cruciferous veggies, and exercise with weights to build bone. Weights? What do I know about weights?

Aug. 2017

OK, let's sign up at a gym and get a personal trainer for awhile. Maybe I can lose the junk around my hips making my skirts and pants tight.

Cardio almost every day 20 minutes but can be 10 at a time, and weights 3 x per week. I had moaning muscles. If they stopped moaning, it was time to increase the amount of weight, or the repetitions. Ok. I will give this a year, have another bone density test and see if it was worth it.

The upside, I lost the "junk" around my waist and my skirts fit better.

After a while, I realized I had a small persistent cough. Maybe it started when I started going to the gym. Just two little coughs, but regularly. It had been going on for about 3 weeks when I made an appointment with the doctor. By this time Bob had noticed, and commented on it.

Breathing test, look in my mouth, nose, ears. Welllll, maybe post nasal drip, or allergies. (I hadn't had allergies before) Maybe chocolate!!! Let's try this and this and this.

Sept. 2017

I went to my acupuncture/holistic doctor "Mary" before trying the pharmaceuticals. Nothing helped..

Oct. 2017

Back to the doctor. Welll, let's try this. Nothing changed.

Nov. 20, 2017

OK another breathing test etc. Then a conference between the 2 doctors and Nurse Practitioner. Go get a chest x-ray. Right now when you leave the office.

When you have an x-ray, CT scan or PET scan you can ask for a copy for yourself while you are there. They give you one to take home with you. They also say it will be 2-3 days before your doctor gets the radiology report.

I have looked at many x-ray CD's while working at the Chiropractor's office. So, when I got home and put the disk in the computer, I said, "THAT does NOT belong there". A rather large white fuzzy area in my right lung. I sent an email to my doctor explaining what I saw.

Nov. 22, 2017

They got the report and called me. A flurry of activity followed. CT for chest approved and scheduled. Pulmonologist, Biopsy, Pet Scan, Oncologist, Thoracic Surgeon. Approvals, denials, resubmit, approvals, scheduling, breathing test, lab tests to be done within 3 days of Biopsy, special diet for the Pet Scan. Tumors feed on sugar, so only meat, cheese and eggs the day before the Pet Scan. Then, a radioactive glucose injection 45 minutes before the scan so they can see how aggressively the tumor is feeding. Appointments, appointments, appointments.

Bottom Line, Lung Cancer Stage 3a.

Dec., 2017

My holistic doctor immediately gave me supplements to suppress formation of new blood vessels, and help kill cancer cells. She also gave me books, videos, web links and much information about treatments in Mexico. Yes, Mexico. In the USA the doctors can pretty much only offer chemo, radiation and surgery. If they offer any other treatment options, they may lose their medical license.  I have met with several people with firsthand Mexico experience.

Dec. 21, 2017

The final appointment was with the surgeon Dec. 21. He was not happy we were getting on a plane the next day for Texas and Christmas. He wanted me to start putting "chemicals" in my body. (His words) He did not like the fact that I said we would have to pray about it before making any decisions. He actually called the Oncologist while we were there to see if it was OK to go to Texas. 

She said it was fine.