Prayer Quilt & Tribute to Chris

This is the quilt being knotted and prayed over in church. There is a story about the material. My Peru roomie, Susan who you see reaching up in the right side of this picture bought the material with the forest scene on a trip to Calif. She states that she had no idea why she was buying it, but did
none the less. When she asked what colors and things Julian likes, he responded greens and blues and the outdoors and she know why she had bought the material. It was up in church being knotted and prayed over when he was sick with a high fever. It was delivered on Wednesday the day Chris died just before we left for chemo. The quilt was the one bright spot in that horrible day.

This is Chris. He is funny, caring and a bright spot in the world. He and Jules have talked almost daily for years, jokes, politics, guy stuff. When Jules got cancer Chris called twice a day to see how he was doing and to keep his spirits up. He can built anything, loves to ski (always wanted to ski with Star), loves to make music, eat at Mickie D's, and play practical jokes. Everybody liked him instantly. He likes cats even though he is allergic to them. He always said that our cat Merlin converted him to a cat lover and he would have adopted him in an instant.
We went to the North Rim with Don and Connie and Chris and Mary. We have had great couple times together. We have watched the show "24" together for years. We have appetizers, dinner, watch 24, then half way through have a delicious dessert. We switch off one week at our house, the next week at their house.
Chris and Mary
Mary and Chris and Jules. Chris had fun every day, whatever he was doing. Chris and Mary are really funny together as you can see in this picture. Chris we really miss you. We wish you were still here. I went back and read this and thought, you are still here. However, I being selfish want to be able to talk and laugh with you. It's just not the same.

Welcome to our world Julian Vincent Romey!

This is my sister Jacki and 5 of her grandkids, Archer, Airah, Aubree, Romey and Bailey. We welcome #6, Julian Vincent Romey!! He is the son of Holly and Noel Romey, born today at 12:22. He weighed in at 6 lb, 6oz and is 19 and 3/4 " long with lots of dark hair! Welcome little Julian to our family! I'm happy to be a Grand Aunt once again. I could go on and on telling stories of Noel. I would often pick him up from Preschool for the Blind when he was little. He came back to my house late afternoon when it was time to cook dinner. He was curious about everything and liked to explore every knob in the house. One time he almost set his hair on fire when he was playing with the knobs on the gas stove! After that I invented a game called experiencing time. I sat him on the little yellow stool, gave him a timer, turned it to one minute and challenged him to stay on the stool and experience time for one minute. He did it and was thrilled that he could stay there till the bell rang one minute later. Each day we increased the time a little till we got up to 30 minutes! He would just sit there, talk and experience time! That little guy now is a chemical engineer and has a baby of his own!
This is Papa Julian with his grandson Dylan. We are really looking forward to the visit of Kirs, Rob, Row and Dilly in May coming clear from India!
This is Julian with Rowan when she was little.
I have to say that this man is one tough cookie. He is going to radiation every day for 5 and a half weeks and going to have chemotherapy every week during that time. I'm tired just being his support. I have to say it's not easy for either of us, but it will be worth it to get rid of the cancer. I drug him "kicking and screaming" as he said to the Wellness Community. This is a free cancer support community housed in a old home on Palm Lane in Phoenix. They have support groups, exercise classes, nutrition classes and other talks on fighting cancer. Well when we walked in the the leader of the group thought that I was the patient and she praised Julian for coming along to support me! She did say that she thought that I must be in recovery so that made me feel a little better. Needless to say, he is doing pretty well and so far is tolerating the treatments well. They give him all kinds of IV meds before the chemo to prevent side effects (a steroid, antinausea medication, benadryl, extra fluids etc) and he has 3 - 4 different anti nausea meds to take at home. Julian says, "I'm still vertical and above room temperature"!

Spring garden and Radiation tattoos

This is spring in my yard. I love these change of season things in my own yard. Spring brings snow peas and broccoli which means sweet dipable veggies and many more stir fry meals. The orange blossoms are blooming and fragrant. We still have some oranges to pick and juice so I can have fresh OJ in the freezer all year. It got a little warm over the weekend, so I made the first iced tea of the season and turned on the swamp cooler for the first time
Roses are sending out their first beautiful enormous blooms.
Irises are blooming
Purple irises bloom about a week after the white ones.
These are my Rio Samba roses. They start yellow, turn to orange and then pink. All flowers love spring in Arizona.

For other news on the home front, Jules and I went to the radiation oncologist yesterday. Studies have shown better results using both chemo and radiation at the same time, so he went today to get tattoos to guide them in the radiation each day. He wanted to have the last supper tattooed on his chest however, they put tiny little dots which almost look like a freckle. He will have radiation for five and 1/2 weeks, five days a week. It will take a maximum of a half hour each day. They don't expect that he will have burning on his skin and he will hopefully tolerate it well. He will have to get a feeding tube, but will only use it if he starts having swallowing problems. This may happen temporarily due to inflammation and swelling of the tumor in his esophagus. We would have waited on the tube, but the doctor said that it takes about a week to get a feeding tube put in. He could become very weak if he cannot eat for a week and be unable to tolerate the chemo & radiation. Good nutrition is very important for a positive outcome. We like the idea that he will be chewing most and hopefully all of his meals. Jules says that it is hard to get steak through a feeding tube. Even though we eat steak only about once a year, this is very important to him! He will have his 1st Radiation treatment and 2nd chemo on April 21.

Roller Derby, other family stars and chemo

Stella Guns the all Star!
This is Star (in front hauling ass) in the regional Roller Derby game in Las Vegas. She has been having a lot of fun and she can go like fire from a gun, thus her name Stella Guns. The Utah team won! Congrats Star!
Diane and Bill came to visit this past week. This picture is Diane's reward for feeding me sand cakes when I was a little tyke!
Mom, Diane, Faye and I, sisters, moms, grandmothers, aunts, daughters some of our many hats, all having fun
Faye and baby bun!
We also enjoyed a surprise visit from Sean a couple weeks ago. His knock on Grandma's door was the first she knew he was in town. We had dinners and he did various things around Mom's house. He made her a roll out trash can in the kitchen, fixed something in the shower and most important fixed her bike! She said, Sean, you don't need to do that. Sean said, Grandma, I have to you used to ride me in the basket to the library! When Sean got older he would ride Faye and then Ryan around in the bike. This bike has a lot of history

Jules is finished with his first round of chemo. He got his pump off the other day. It seems to be helping. He can eat apples and grapes again! He will have another round of chemo in a couple weeks. However, we have to see Dr. McBride Monday who wants to discuss radiation. We are leary at this point. We are thinking that he should do 2 rounds of chemo and see how it is responding to that. We will go and see what Dr. McBride has to say. The chemo wasn't fun, but it was OK. The nausea was well controlled with anti nausea meds. At home we are concentrating on diet, eating foods that are shown to be cancer fighters. We are going to start growing broccoli and red clover sprouts and eating other fruits and veggies, etc that show promise. We are talking a lot and continue trying to figure out the best course of action.

Our busy week

We got the results of the final test, the esophageal ultra sound. It showed cancer in the stomach also. It is a type that doesn't show up well on PET scans. The tumor in the lower esophagus is through most of the layers. This was definitely disappointing, however, Dr. Kukunoor thinks there is a good chance that chemo will be able to tackle the stomach cancer. He had a port put in his chest last Friday. This is a button under the skin with a permanent line going into a vein allowing easy access for administration of chemo. Julian jokes that he will be able to hook a keg up to it!

We go for a chemo class this afternoon at the doctor's office where we will go tomorrow for the first chemo session. Larry says that the class is to teach you how the throw up with dignity! We both thought that was funny in a truthful way.

We have been living out lives in and among all this medical stuff. I've been going to work when we don't have to be at doctor's or hospitals and the kids cheer me up immensely. Just everyday things and great. We went out to dinner with our good friends the Burrs on Thursday and Jules found something he could eat (he had crab cakes), then we went back to our house and had apple blossoms with ice cream. Saturday I took the youngest of the boys (Niko and Maceo) to the family fun day at my school. Their favorite things were jumping in the basket ball air tube house and using the sledge hammer at the strong man test. Well Maceo did that about 20 or 30 times and won lots of stuff because he could hit it clear to the top most every time. So could Niko, but he went off to other things. They were 2 of very few kids who could easily hit it to the top. Faye says that it is because they practice hitting the dirt in the back yard with a sledge hammer all the time!

Saturday afternoon Mom, Jules and I went to see the wildflowers at south mountains. We've had a lot of rain this winter and the Calif poppies and lupine were beautiful.

Our Journey

We have been to many doctors in our search to find the correct treatment for Jules esophageal cancer. We have seen his primary care physician, Gastroenterologists, Oncologists, Radiology Oncologist, and Surgeons. He has had a Fluoroscope, Upper Endoscope, PET and CT Scans and hopefully next week a Esophageal Ultra Sound. That is a relatively new test and the only place in Phoenix now that you can get it is Mayo. It will be available in 2 weeks somewhere else, but we cannot wait two weeks. Hopefully he will have it done at Mayo on Tuesday 3/16. The doctor who is going to do it has the week off, but he is going to come in specially just to do the test. Isn't that amazing!

There are many things which we have found as blessings and things to be thankful for:

Jules had his yearly physical in October and started taking vitamin B12 by his doctor's suggestion. This caused stomach irritation which started this whole thing. If he hadn't started taking B12 the cancer symptoms may not have shown up till later.

He had a pain in his back and right arm which is what actually made him to go to the doctor. This pain disappeared after his upper endoscopy (which possibly resolved a pinched nerve?).

We found that the cancer is only in his esophagus. I never thought that we would be celebrating anything after a cancer diagnosis. It sounds strange, but we try to concentrate on the positive and that is definitely positive!

We were sitting in the waiting room at St. Joseph's Hospital today waiting to see Dr. McBride and we were talking about this journey we are on. We got home and there was a package from my childhood friend Janice. It was a book titled, "Cancer Journey: A Caregiver's View From the Passenger Seat". It was written by a friend of Janice's, Cynthia Zahm Siegfried. We started reading it together in the waiting room at Mayo's. The first couple chapters sure sound like what we're going though now.

We have met with or talked on the phone with 2 people who had esophageal cancer who have shared their experiences with us. It's very helpful and a blessing to talk to others who have gone though what we are going through now.

There are so many people and churches praying for us and that is certainly a blessing! We feel encircled in love and care and God's arms.

There are so many people who have shared every cancer fighting food and cure with us. If we could read and consume all of this it would take us about a year to decide that treatment we will go with. We have gotten heavy boxes filled with charts, magic fluid, on and on all with cancer fighting properties. We have read parts of books ourselves on cancer fighting foods and what to eat to prevent or fight cancer. I just want you all to know that we have made some changes. We are using that "lard" called coconut oil for frying potatoes, stir fry etc. We are having smoothies with whey protein powder and sprinkling Tumaric on everything, eating asparagus and avacados. We have a juicer that can turn veggies etc into juice. Actually the Gastroenterologist said that he should stick with liquid and pureed foods, so I think that it is a miracle that he is able to eat regular foods at all. He has become a "slow eater, tiny bite taker" and I don't think I'll call Mrs. Piggly-Wiggly for the cure yet because Jules is staying strong by eating slowly, chewing well (as taught by Mimi) and taking tiny bites. He can spend 45 minutes eating breakfast. For example for this morning he had cereal (healthy kind with lots of whole grains) with dried cranberries and raisins, a sweet roll and half a cup of coffee. The sweet roll was given us by this cut old couple from Maricopa, AZ who have been coming by to pick oranges from our trees. She baked this chocolate almond German style sweet roll for us, so we have to eat it! Anyway, we do our best, but right now I am just trying to keep Jules healthy for whatever treatment is to come.

A bump in the road of life

Well we are in this for the long haul. Jules has esophageal cancer and fighting that will be our life for awhile. If I can suggest one thing at the start, you all should go right down to your doctor and talk about your indigestion and acid reflux. Insist that they look at both ends. When you get that dreaded colonoscopy insist that they also do a upper endoscopy- in medical terms (esophagogastroduodenoscopy, EGD).
This has been a tough pill to swallow. In fact I'm amazed that he has been able to swallow at all because the bottom inch of his esophagus is finger size because of the tumor. We go together to his primary care doctor tomorrow afternoon to start planning our attack and asking questions. Next Tuesday is a CT scan and PET scan. I think they will tell us the stage and see if it has spread. Then we see an oncologist.
A blessing from the biopsy is that it is not melenoma (which he had a removed from his back 10 years ago). We are very thankful for that.

This is Jules holding on as best he can, struggling to eat, but determined.
These are all our friends and family gathering around to support us.