Sunday, August 15, 2010

The amusing, entertaining, and interesting list

After writing about the things I dislike in my July 25th blog post, I decided I would write about the things that somewhat mildly amuse or entertain me. Don’t get me wrong, there is nothing good about cancer. As my friend Heidi Toth has put it before, “It’s not as if there are people who are pro-cancer and anti-cancer out there.” We’d all like to see the end to this disease. I of course have my “Cancer Sucks” pin, which a nurse at the ER in Provo gave to me. I have not gone around wearing it yet, but I think it sums up what the world thinks of this epidemic.

Here are the things I have come up with that have been interesting, amusing, or entertaining. Maybe I’m just weird!

* Getting my blood drawn in the complete dark. To see if the chemo has exited my body enough to be released from the hospital, for one particular blood test, they take a blood sample and it must be very dark when they do it. The last phlebotomists went to great lengths in doing this; pulling the blinds, shielding any extra light with one of my pillows, and finally it gets drawn directly into a dark bag and stays there until getting to the lab.
* Some of the things I’ve said or done. Ok. I guess I’ve had a few hallucinations. The nurse bringing me the kitty cat (bag of sodium bicarbonate), and the spiders in my hat crawling all around. Then there was the time I awoke to the arrival of my friend Leslie who I gave my regrets to about the boyfriend “from the east” who apparently I thought had just broken up with her, and that I hoped she was going to be okay. I was dead serious as I patted her arm, and very sympathetic toward her. It took me several minutes to realize where I was, who I was talking to, and that she did not have a boyfriend, nor one “from the east.” There are more stories, but I may incriminate myself…
* Doctors, Nurses, and staff mildly amuse me all the time! I have met some great people! Jenn, at IMC in Murray made me a couple of hats. They are awesome. She is awesome. My surgeon, Dr Scott said he rides his bike to work in the morning wearing an orange jacket and thinks he oftentimes gets confused for a UDOT employee. The kitchen and housekeeping help at IMC; we’ve become friends. The CNA’s and RN’s are all really fantastic. I have liked them all. I think I am a familiar face around there now.
* Stonehenge. It was awful in the beginning. I went from the hospital straight to a skilled nursing facility and I was not happy to be moving in my fragile state. But it ended up being the best place I could have spent recovering for 30 days. It is a very nice facility. Everyone was family there. My physical trainers and OTC were great, kitchen, housekeeping, administrative, and ALL of the nurses were fantastic. When I left, it felt as if I was leaving home, leaving family. They really do care. One of the mildly amusing days at Stonehenge in my memory was when I got help in shaving the rest of my hair off. One of the nurses, Elizabeth, was there and Amy Petty who works as a beautician there. This was an emergency that several of the nurses and staff took seriously. They made things fun, we took pictures, tried on scarves, and they made sure it was a positive day I would not forget. Mostly I will not ever forget the kindness and love shown toward me. Hair grows back, that is a temporary loss. But memories last a lifetime.
* The new “equipment” in my body. That may not sound amusing or even funny at all. But to me it is just so very interesting to think about it. Now when I see my x-rays, I know exactly what is inside of me and how ultra cool it is that we’ve come so far in technology and medicine to be able to slice a person open and make something bad…good once again. I can’t wait to go through the airport scanners.
* Having my leg drilled into for a biopsy of my bone. The biopsy traveled through Utah as well as Massachusetts because an official cancer title could not be determined. It was thought to have been a fibrosarcoma, a synovial cell sarcoma, or a melanoma. Fibrosarcoma was determined to be the official cancer of my femur bone, but not until after my surgery and they got more to look at.
* The most pain I’ve ever experienced in my life was breaking my femur bone. The mildly amusing part to me was that I did it while trying to turn off my alarm clock in bed that morning. Most people who break bones are jumping off things, playing sports, or otherwise being quite active. But all I had to do was turn over in bed ever so slightly. The bone was paper thin, wearing down, and I knew this…so I was somewhat prepared.
* The surgery. My doctor originally wanted to do the surgery on Wednesday March 31st, but after looking further at the x-rays and MRI’s, decided I should do some chemotherapy cycles beforehand to try to shrink the tumors. I ended up only having one day of chemo, March 29th. I broke the femur on March 30th. Then, on March 31st I had what ended up being emergency surgery. I was so glad just to get the bone out of me! It hurt and I knew that it needed to go. How grateful I was that my surgeon could still perform the procedure, and on the original day we had planned for in the very beginning.
* Calling 911 on myself. I have called 911 a couple of times in my life, but for other people or happenings. Looking back on it all, I see that everything and everyone was prepared for that morning. The call went smoothly, my neighbor (Derek Arnot) was awake and ready to go for the day and just in the nick of time to let the paramedics into my house for me, the paramedics arrived within minutes, I had one ambulance ride to UVRMC in Provo where they called my doctor and did things to prepare me for transport, my family and a friend showed up there, then I had another ambulance ride to IMC in Murray where I would stay. What a day! Much of it is blotted out of my memory.

Whew! Long list. Guess I'm easily amused. But then...I knew this would be a long road ahead of me from the beginning...I may as well take note of as many things as I can that are not negative (because there are a lot, like feeling sick) so that I can keep going. Just keep going. Almost there.

Thursday, August 12, 2010

Food glorious food

In honor of all the wonderful years of eating and good cooks in my life, including restaurants, I dedicate this blog post to food! I never knew what I was missing until I had no appetite for food, no taste buds for certain foods, and couldn’t eat for many days due to nausea and vomiting. Food really can be comforting, as I have heard and felt. It can be healthy, as well as bad for you (in super-size quantity). And it is the thing that we must have in order to keep our bodies going. So without further ado, here is a list of FOOD I LIKE!

Zupa’s: pina colada chicken salad, Wisconsin cauliflower soup.
Fat Jack’s Pizza: cheese sticks.
Cracker Barrel: hash brown casserole.
Winger’s: sticky fingers.
The Outback Steakhouse: bloomin’ onion and blue cheese pecan chopped salad.
Burger King: bacon, egg and cheese croissan’wich.
Daley Freeze: French fries. (the best fries anywhere)
JCW’s: bacon blue cheese burger, fries, ultimate fry sauce!
Café Rio: chicken or sweet pork salad.
Saigon Café: everything!
Papa John’s: Hawaiian BBQ chicken pizza.
Macaroni Grill: grilled chicken portobello. (which has been taken off the menu)
Gandolfo's: urban cowboy sandwich.
The Pizza Factory: raspberry vinaigrette salad and breadtwists.
PF Changs: lettuce wraps.
Mi Ranchito: chile relleno, beef tamale, enchiladas.

My Grandma: homemade whole wheat bread, everything she touches is a masterpiece.
My Mom: cinnamon rolls, breadsticks, rolls, pizza, stews and soups. (takes after her mother; master chef!)
My Dad: homemade mac n cheese, breakfasts, French bread pizza, and bawl baby soup. (noodles, tomato sauce, hamburger)
My Sister Natalie: all pies, all salads, rice dishes, bottled salsa and grape juice, banana bread and muffins of all kinds. (she can make anything taste good and be more healthy by switching out ingredients)
My Sis in Law Stephanie: chicken rolls with rice, candied salmon, and desserts.
Melinda Wells: homemade ice cream of many flavors.
Lynne Watanabe: coconut cream pie.
Melissa Wilson Martin: fruit bars, Hawaiian haystacks and other rice dishes, pizza creations out of jiffy mix or freezer dough. (don’t forget the ugly cake)
Amber Morris: black forest cake.
Eliza Nevin: zucchini stroganoff and Mexican haystacks.
Rachel and Annie Snow: pies…well anything really.
Leslie Kay: white chili and a mean BBQ.
Ben Rector: curry.
Bryan Hutchison (my neighbor): banana bread, zucchini bread.
The Arnot’s (my other neighbors): amazing potato salad, egg rolls, pretty much everything is good that Coree makes, granola from scratch…I guess that’s what it is…I just know I get it at Christmas.
Caprice Bailey: cinnamon pull aparts.
Ann Hicken: all creative food attempts.
Sara Stauffer: if only I liked Kimchi…but those truffles were sure good.
Gail Fletcher: all kinds of desserts.
Serina Jankovich: muddy buddies.
Heather Poulson Bingham: dips, entire Thanksgiving meals including but not limited to sweet potato casserole.
Jessie and Dave Jones: pumpkin bread.
Ryan and Johanna Webb: the coveted Orozco’s salsa! (I got the recipe from my sister who lives in their neighborhood) & Johanna’s pumpkin roll.
Roda Solis Camposano (and her mom): all Filipino food I tried. (pancit and lumpia!)
Sina Matthes: chicken and broccoli bake.
Ray Oyler: fajitas and all the fixings.
Heidi Toth: cookies, crock pot meals, and other creations.
Samantha Roach: lasagna.
Emily Fuller Sutherland: party pleasers, Harry Potter theme food!

I’m sure I’ve left out some really fantastic food dishes and I hope I haven’t offended any friends or family members by not mentioning their name. If you are reading this now, and you are not on “the list” it simply means that I’ve forgotten how well you cook and I need a reminder, or that I have not yet been introduced to your cooking. I can make arrangements to accept all homemade food for taste testing at your convenience. I like mostly everything. I don’t discriminate when it comes to food. So please bring your food by. A good food motto to live by is, “I’ll try anything once!”

Here’s to another week. Next week has GOT to be better. There is more to life than just eating Gatorade and pudding snacks.

Monday, August 9, 2010


Last week I had chemo. Adriamycin and cisplatin; the bad kind. This week I go into hibernation. It seems that the side effects get worse with each round of this. It also seems that they start sooner and last longer now. I'm not going to lie, this is pretty miserable. The pits. A drag. It is every headache, stomach ache, canker sore, feeling of nausea, fatigue, body ache, and flu like symptom you have ever felt. If I didn't have two doctor's appointments this week, I would just stay in bed and not get out until Friday!

At the last appointment I had with Dr Litton, my oncologist, we were discussing things that were done 10, 20, 30, and 50 years ago in medicine. It is amazing the things they used to do, and no longer are doing. It is also equally amazing the things we are capable of doing now; how far we have come in medicine. I posed the question of what things would be like in another 30 years from now. There was some hesitation until I gave him the reassurance to go ahead with what I thought he would say. He said that everyone, including those who will work in medicine, will wonder why we poisoned cancer patients? He said, "Cut, burn, and poison," are the methods we use now. It's what we know now. I wondered aloud to him if he thought there would be a cure for cancer in 30 years from now, even if it was only for a select few types. But he said that perhaps it would be more like a chronic illness in the future. We would still have it, cancer would still exist, but we would probably be treating it differently and people would be living longer.

So if I am thinking long and hard about this, I am pioneering the way in medicine. I am making possible, through the successes and failures, a future of cancer patients to not have to go through what I am going through. The whole discussion started over some things my mother said they used to do back in her day, and then the doctor chiming in, and then me stepping in with a huge, "I'm grateful to have my leg!" If this would have happened to me 10 or 20 years ago, the possibility of amputation would be very high. The way I look at it, is that people for decades have been paving the way for me. I am the beneficiary of all the collective data, successes, failures, tests and trials, and now am receiving the very best care at the present moment that modern medicine knows how to give me.

Have I mentioned lately how grateful I am? For everything...

I will emerge out of hibernation sometime soon; maybe when I don't feel so achy, maybe when I don't feel like throwing up, or maybe when my appetite comes back. I will think about the next good meal and just put it on hold. Right now, feeling better and stronger over the next week or two is my first priority.

It's times like these I have to keep telling myself that I can do this!

Wednesday, August 4, 2010

Halfway mark!

My oncologist gave me some unexpected news on Monday. I went into Dr Gregory Litton’s office and we were discussing the outline of the rest of my treatments. He said I was on cycle 4 (out of 6), and I kept thinking to myself that I was on cycle 3 and he must be mistaken. I finally got my pad of paper out so I could have him clarify what he meant. The very first day of chemo was done on March 29th. On March 30th I broke my femur and ended up taking a couple of ambulance rides; finally arriving to IMC in Murray to await surgery the next day. Then, there was the surgery on March 31st. So there wasn’t any possible way to complete the cycle I had just started on the 29th because I was recovering in the hospital and then put into rehab for 30 days. To make up the items I missed on the very tail end of my treatments may not be that beneficial either, I was told. So in actuality, since the first day of the first cycle was counted as complete, and because I have completed two other full cycles, I am at the halfway mark; Cycle 4!! I started today. Can I get a "wahoo!?!" Also, I found out that my cancer is in remission; which I didn’t realize even knowing what the pathology report said. I am being treated with chemotherapy for the potential of microscopic cancer; or what might be there. Sarcomas are high grade and fast growing. If there was even one small cancer cell left that the naked eye could not see, it could grow very quickly and be twice as hard to deal with the second time around. Or even metastasize. There were negative signs on my chest x-ray (lungs) of any tumor growth. This x-ray was done quite a few weeks ago and I guess I had figured no news was good news. The lungs would be the first place it would metastasize, so that was indeed good news. All in all, a very positive day ending with a trip to JCW’s for a hamburger and french fry with my mom.

This is how my chemo road map should have been. However, on the first cycle I only completed day 1, and will not be making up the rest on the tail end of treatment.

Cycle 1:
Day 1: adriamycin and cisplatin
Day 2: adriamycin and cisplatin
Day 3: neulasta shot
Day 21: high dose methotrexate (with leucovorin)
Day 28: high dose methotrexate (with leucovorin)

Cycle 2:
Day 1: adriamycin and cisplatin
Day 2: adriamycin and cisplatin
Day 3: neulasta shot
Day 21: high dose methotrexate (with leucovorin)
Day 28: high dose methotrexate (with leucovorin)

Cycle 3:
Day 1: adriamycin and cisplatin
Day 2: adriamycin and cisplatin
Day 3: neulasta shot
Day 21: high dose methotrexate (with leucovorin)
Day 28: high dose methotrexate (with leucovorin)

Cycle 4:
Day 1: adriamycin and cisplatin
Day 2: adriamycin and cisplatin
Day 3: neulasta shot
Day 21: high dose methotrexate (with leucovorin)
Day 28: high dose methotrexate (with leucovorin)

Cycle 5:
Day 1: adriamycin
Day 2: adriamycin
Day 3: neulasta shot
Day 14: high dose methotrexate (with leucovorin)
Day 21: high dose methotrexate (with leucovorin)

Cycle 6:
Day 1: adriamycin
Day 2: adriamycin
Day 3: neulasta shot
Day 14: high dose methotrexate (with leucovorin)
Day 21: high dose methotrexate (with leucovorin)

* cycle length is 36 days approx. (unless hospitalization, other illnesses due to cancer, low blood/kidney/liver counts, holidays, scheduling, etc…)
** adriamycin and cisplatin are done as outpatient.
*** high dose methotrexate (with leucovorin) is done as inpatient, and usually requires about 4-6 days each time in the hospital.

I will likely be done with the chemotherapy treatments in December instead of sometime in the Spring of 2011, which is what I had thought. It is important to keep looking forward... forward to the end of treatment, forward to life next year, forward to the years to come... Keep looking forward.

Sunday, August 1, 2010

I believe in Christ

I laughed a lot today. I ate well. I watched a storm roll in as the evening approached. I sat on a chair in the backyard while my feet waded in cold water in a kiddie pool. I thought about my day and how I really enjoy going to church on Sundays. I like having the social connections and friendships that can form at church and because of church. But more importantly I need the connection to Christ. Sundays usually bring new perspective, and today was no different. It was the inability to attend church that I thought about. It is hard for me to stay away, to not be near my friends and congregation regularly, and to not hear of the talks and lessons about Christ. I am able to make it there when I am not in the hospital having chemo, not sick from the side effects of chemo, and not counseled to be absent because of my immune system. Thank goodness I have been able to make it some of the time. The sabbath is always a better day when I can partake of the Lord's sacrament, sing hymns, listen to people who testify of the Savior, and be surrounded by those who also believe in Christ. It is kind of like taking a spiritual vitamin; it gets me through the rest of the week and provides nourishment. How empty my life would be without the Savior in it. How grateful I am for Sundays, new perspective, my family and friends, life and the wonders I have beheld... and for Christ, who I know has given everything to me. I believe in Christ.

We believe in God, the Eternal Father, and in His Son, Jesus Christ, and in the Holy Ghost. (First Article of Faith. The Church of Jesus Christ of Latter Day Saints)