Things about Sam and Leslie

We went into this week with some experience, more education, more prescription drugs, and perhaps a little more confidence.  This week was a group effort.  Family, friends, coworkers, our oncologist, and the fun-loving nurses at the infusion center all made this week as enjoyable as possible.

On Monday, a dietitian (Lisa) stopped by Sam’s room at the infusion center and offered some great advice on what to eat and when to eat.  She set a daily calorie goal for Sam with specifics on how much protein he should be eating.  Lisa’s knowledge has given us a much clearer idea of how much Sam needs to eat to maintain his weight.  She also had several tips on ways to sneak in extra calories.

Sam's dream diet!

Appetite and nausea are two of our daily struggles.  Sam takes quite a bit of medication to fight both the nausea and his relentless hiccups.  Ginger also seems to settle his stomach.  We go through a gallon or two of ginger tea a day.  Jack and Jackie make delicious ginger tea.  In fact, we had to make an emergency run over to Covington Drive one morning for Sam’s fix.  Sam also likes warm ginger tea, so my mother has been on a mission for the last week going to various stores and international markets in search of the wonder tea.  We have the famous Bledsoe ginger tea, every brand of ginger tea sold at the grocery stores in town, ginger tea from Thailand, and ginger tea from Lebanon.

Sam can't get enough

On a side note, want to know how to get all of the patients at the infusion center excited and shouting at the same time?  Just mention the word, “hiccups” and everyone pops out of their little rooms offering suggestions and demonstrations of their “cure” to the hiccups.  The hysteria was amusing and it was nice to see an otherwise quiet place become rowdy with impassioned people.

An old man INSISTED that you hold your nose and ears at the same time and blow. I recommend trying this method next time you get the hiccups in public.

Jack and Jackie have been tremendously helpful with making high protein and nutrient-rich foods to keep in our refrigerator and to snack on throughout the day.  This week they made:  grilled salmon, poached salmon, London broil, grilled chicken, kale with carrots, potato salad, toasted almond trail mix, and several gallons of ginger tea.   Everything was delicious.  We firmly believe that all of this food helped keep Sam’s spirits high and energy level elevated this week.

Carrie read about the pomegranate popsicles and decided she needed to swing by.

Our survival guide

Early in the week, Sam noticed that his hair was falling out.  We would barely pull at what little hair he had and the hair would easily come right out.  This disclosed an unknown fetish that I have which is picking out Sam’s hair.  It’s kind of gross, kind of fun, and highly addictive.  After spending way too much time picking at his arm hair and leg hair, I thought that using a lint roller would be way more efficient. It sure was. After massaging Sam with the sticky lint roller, I decided that using the hose on the vacuum cleaner would be even more efficient.  Unfortunately, Sam did not approve of my suggestion.

The Sticky Lint Roller is Allowed.

The Suck Kut is NOT.

We had a surprise musical guest stop by this week. Bill is a talented and big-hearted man who graduated from Vanderbilt in 1970 and is now a retired teacher.  Music is his passion and he believes that the best way for him to give back to Vanderbilt is to sing and play music to cancer patients and their families.  Bill was very entertaining and charming.  He broke it down by singing various hits by Madonna and Lady Gaga.

Bill and Sam

BUMP PATROL

Sam is showing signs of major progress.  This picture was taken on Sam’s very first day of chemotherapy two weeks ago.

Sam's big mean bump

This picture was taken on Monday (13 days after his first treatment).  You can see a significant difference in the size of Sam’s tumor.  Our oncologist told us that this is a very encouraging sign.

Big cute smile. And yes, we use our snowman china all year long.

All in all, I’d have to say that this week was a lot better than what we expected.  Nausea and fatigue will be Sam’s battle for the upcoming week.  We are all looking forward to this long weekend to recover and hang loose away from the hospital.

Finally Friday!

We can’t say it enough.  Thank you to everyone for the loving emails, phone calls, and thoughtful gifts.  Have a relaxing long weekend!

Lots of love and gratitude,

Leslie Bledsoe

P.S.  I was totally kidding about Bill’s musical performance.  He sang show tunes 🙂

Sam and I keep hearing the same excellent questions about chemotherapy and his schedule.  Up until a few weeks ago, we never understood how the whole chemotherapy thing worked.  Our heads spun wildly at our first meeting with our oncologist who came up with the chemotherapy treatment and schedule.  I was left staring blankly at Kate’s rigorous note-taking.  We refer to her unbelievably thorough notes frequently.

Sam and I recently talked about our chemotherapy knowledge prior to the last several weeks. Even though we have known several people who have received chemotherapy, we had never thought about all the details.  The only thing we knew was that chemotherapy was usually associated with hair loss.  Here’s a bit of the education we’ve gotten over the last few weeks.

Chemotherapy is a type of cancer treatment that uses drugs to destroy cancer cells.  It works by stopping or slowing the growth of cancer cells, which grow and divide quickly.  While it’s busy with the bad cells, it also harms healthy cells (it doesn’t know the difference).  This damage to the healthy cells is what causes all of the side effects that we have mentioned.  The most common side effects are fatigue, nausea, vomiting, decreased blood cell counts, hair loss, mouth sores, and pain in general.

Chemotherapy means a million different things.  It refers to countless drugs, is administered on whatever schedule the doctor decides, and every person reacts differently.  Some people don’t have any side effects while receiving treatment and others suffer quite a bit.  The side effects depend on the types and amounts of drugs one gets and how his or her body reacts.  Consistently, we are encouraged and reminded to not listen to other people’s chemotherapy horror stories because each chemo treatment regimen differs so greatly.

Sometimes, chemotherapy is used as the only cancer treatment.  But more often, cancer patients will get chemotherapy along with surgery and radiation therapy.

Chemotherapy can be given in many ways:  injection (like a shot), intra-arterial (the chemotherapy goes directly into the artery that is feeding it), intraperitoneal (the chemotherapy goes directly into the area that contains the organs such as the intestines, stomach, liver, and ovaries), intravenous (the chemotherapy goes directly into a vein), topically (a cream is applied to the skin), and orally (pill).

Sam receives his chemotherapy intravenously through a portacath that is located in his chest beneath his skin.  We call it his POWER PORT!  It is a cylinder with a hollow space inside that is sealed by a soft top. It connects to a small, flexible tube (catheter) that is connected to a vein. When a needle is put into the soft top of the port it creates access to Sam’s bloodstream, meaning that medications and fluids can be given and blood samples withdrawn.  Sam had to get his power port installed (put in by means of surgery) prior to receiving chemotherapy.  His incisions have healed nicely and you can’t tell that he has a purple power port in his chest.

Chemotherapy is given at the infusion center, which is not nearly as exotic as it sounds.  At the infusion center at Vanderbilt, there are 44 small rooms.  All of the rooms have a few comfortable chairs and a flat screen tv with a DVD player.  Some of the rooms have beds.  These rooms are usually for the sicker patients or the patients with testicular cancer.  There aren’t any doctors at the infusion center but there are a lot of loving and funny nurses.

Because Ewing’s Sarcoma is very aggressive, Sam’s chemotherapy regimen is also very aggressive.  Sam is currently working on an every other week chemotherapy schedule.  Two weeks ago, he received chemotherapy for two days (four hours each day).  During this cycle, he was given three different chemotherapy drugs.  This coming week, Sam will have five straight days of chemotherapy that will be administered for six hours each day (totaling 30 hours of chemo for the week).  During this treatment, he will get two different chemotherapy drugs.  That makes a total of five different chemotherapy drugs.  In addition to the chemotherapy drugs, he gets anti-nausea medication, steroids, and bladder medication.  Chemo nurses have very important jobs.  Each nurse that has worked with us has been incredible.

As long as Sam’s white blood cell count stays above a certain level, the oncologist will keep him on this schedule until his surgery.  The white blood cell count is important because white blood cells are cells of the immune system that defend the body against infectious disease and foreign materials.  During Sam’s off weeks, he has to get his labs drawn and we meet with the oncologist to make sure we’re ready for the upcoming week.

Here is Sam’s tentative schedule:

Chemo Schedule

About two weeks after his surgery, he’ll start chemotherapy again on a different schedule.

This weekend has been beautiful and we have enjoyed each minute of it.  We are ready for this week.

Love,

Leslie and Sam

Sam's last big meal before treatment. Two cheeseburgers with a side of fries and another cheeseburger.

Our week off from chemotherapy was full of challenges and lots of small victories.  Sam and I were faced with a lot of problem solving.  What to eat?  When to eat?  What drugs work?  Which ones have unbearable side effects?  How often can you take these medications?

Controlling the side effects of chemotherapy involves a lot of tinkering, teamwork, and patience.  There’s no doubt that chemotherapy has rough side effects.  It seems possible to make life tolerable even with these grueling effects, but it takes some figuring out.

With the help of our oncologist and a chemotherapy nurse, we were able to pinpoint which medication was causing the headaches.  Once we figured that out, we had to figure out how to stop all of the hiccupping.  Sam had the hiccups for two straight days.  His persistent hiccups interfered greatly with what little appetite he had and our ability to sleep.  We were both pretty miserable.  Fortunately, they make drugs for just about everything these days.  The second I knew that his hiccup-curing pills were at the pharmacy…I was there.  These happy little pills were just what he needed.  Our sanity was saved.

Once the side effects were temporarily maintained, it was naptime baby!  Sam, Theo, and BB have become great napping buddies.  In fact, I don’t know who slept more the few days after his treatment.  Fatigue is one side effect that doesn’t really have a solution but napping sure feels good.  I can’t decide if our cats are happy about the extra napping buddy or if they are annoyed that a tall human has gotten in the way of their napping space.

Quit Hogging The Bed!

During chemotherapy and up until four days after his last treatment, Sam didn’t have much of an appetite.  He was usually nauseous and said that food had a metallic taste.  Even though our refrigerator is stocked with scones, muffins, cheesecake, and lots of meat and cheeses, Sam couldn’t stand the sight or smell of any of them.

The BRAT diet is great to fall back on, but it doesn’t offer a lot of nutrients or protein.  Jackie has spent a lot of time reading about diet and nutrition with cancer patients receiving chemotherapy.  Moms are the wisest people on this planet.  Through her research and cookbooks, she has already taught us so much.

He washed these down with rice milk.

Nutrition is a vital part of healing and staying strong while receiving treatment.  However, food loses its appeal to most patients receiving chemotherapy.  Who enjoys eating while being nauseous and tired? It’s unbelievable to think that eating is an overwhelming task for Sam.  Our evenings used to be filled with excitement with what we’d have for dinner or where we were going out to eat.  Our pizza, beer, and nachos diet is temporarily on hold.

This is why we have mothers.  Jackie made Sam several nutritional snacks, meals, and drinks that settled Sam’s stomach and satisfied his hunger.  This week she made:  sweet potato soup, zucchini soup, pomegranate popsicles, hard-boiled eggs, tapioca pudding (yum), sweet potato chunks (similar to sweet potato fries but healthier), green tea with chamomile, and ginger tea.  These light and flavorful foods have really helped Sam stay nourished throughout the week.  Making sure Sam is excited about eating is essential as we continue to keep him as strong as possible.

Pomegranate Popsicles!

Each day, I give Sam a shot of Neupogen.  This stimulates his white blood cell production.  Finally, all of those hours I spent watching Grey’s Anatomy are coming to good use.  Initially, the idea of poking my husband with a needle seemed frightening and unorthodox but I got over that pretty quickly.  I wash my hands, clean his skin, take the cap off the needle, grab some loose skin, let Sam know I love him, and then it’s time to poke!  Go white blood cells go!  After each shot Sam is rewarded with Teddy Grahams.:)

Theo's butt on a $600 shot.

These last few days have been almost normal.  Sam and I went back to work and more importantly…Sam’s appetite came back with a vengeance!  The first day it came back he insisted that I take him to Burger King.  He wolfed down a Whopper in record time!

We met with the oncologist today (May 19^th) and Sam’s white blood cell count is high enough to being treatment again next week.  He’ll be receiving six hours of chemotherapy each day for five straight days.  I believe we’re all a little nervous about this next go round, but we’re ready.

We’ll update the blog next weekend.

Thank you again for all of the loving emails, comments, and cards.  We are blessed to be surrounded by such awesomeness.

Love,

Leslie

No...it's MY Xbox!

Our first day of chemotherapy was a long one.  Sam had to get his labs drawn, meet with the oncologist, and then he began his four-hour treatment. We were at the hospital for four hours before the four-hour treatment.

We were given one of the deluxe suites for his chemotherapy.  Beginner’s luck!  It’s similar to a corner office (with the exception of the bed).  Sam had a bed.  I had a recliner.  We were both given blankets that were heated to 115 degrees.  Oh, what a sweet suite.  If you are curious as to what a 115 degree blanket feels like, I can only say that I don’t recommend sticking your favorite quilt that your grandmother gave you in the oven and baking it at 115 degrees.  That’s just some advice I thought I’d share.  The room had windows with a view and our tv had a remote control!  Though it seems as if all of the tvs would have a remote control, at the infusion center, this is not the case.  Maybe we should consider “accidentally” taking a remote control home after a visit and conveniently bring it back each visit but “forget” to leave it there.  Maybe that’s why there’s a shortage of remote controls!

At the beginning of the treatment, we had to watch a video about Vanderbilt hospital, cancer, and chemotherapy.  Some of the information was very insightful and offered great tips.  We learned about the BRAT diet, which consists of foods that have relatively low fiber and are easy to digest.  BRAT stands for:  bananas, rice, applesauce, and toast.  I’m sure Sam would prefer:  bacon, ranch, Alaskan king crab legs, and T-bones.

Even though the information was helpful, it was delivered in an unenthusiastic way.  In true Sam and Leslie style, Sam and I laughed inappropriately at parts and were distracted quite frequently during the video. The nurse came into the room and said (sarcastically), “It’s nice to see you both paying attention.”  Whoops!  This reminded me of the two of us getting in trouble in high school.

Sam received anti-nausea medication, steroids, and three different chemotherapy drugs.  After the chemotherapy, he was feeling pretty good.  I didn’t let him drive home because I was afraid of roid rage 🙂 We stopped by the Hackett residence to visit my parents and then we stopped by the Bledsoe residence to pick up soup, biscuits, and muffins that Jackie had made for us.  About the time we got home, Jack stopped by to deliver us some scones. More food!

Sam began to feel ill right around dinnertime.  He was able to eat a small bowl of the delicious soup and a couple of biscuits.  After just a little bit of video game time, he was off to bed early.  Sam said he had lots of weird dreams.  That must explain why he stole the sheets from me on several occasions throughout the night.  Hmph!

On Wednesday morning, he was still feeling pretty badly.  He has been prescribed two different anti-nausea medications and had to take them both on Wednesday morning.  He also had a roaring case of the hiccups.  The hiccups piqued BB and Theo’s interest.  Each time Sam hiccupped, they both looked at him like, “What?!?!?!?!”

On day two of chemotherapy, we got lucky again with the deluxe suite.  Sam hung out on the bed and read for the duration of his treatment.  It was rather uneventful and pretty peaceful.

We have been warned that Sam will continue to feel pretty bad for the next few days (even up to a week).  Sam just got an Xbox 360, so hopefully he can distract himself from the side effects with video games, good food, and lots of naps.

We have an appointment with our oncologist next Thursday, so we’ll post again soon!

We can’t thank everyone enough for all of the support, love, and prayers.  Kate, Amy, and Nina, you are all my saviors for coming to town last week.  Jack and Jackie, you are the best cooks in the world.  Thank you for keeping our refrigerator stocked with incredible food.

Here are some recent pictures of our adventure and our pre-emptive strike against hair loss.

Lots of love and thanks,

Leslie

Over the last week and a half, the “fancy doctors” (a.k.a. specialists) at Vanderbilt Ingram Cancer Center have produced a diagnosis and a plan for Sam’s shoulder problem. Granted, it was surprising–and not in a fun way–to have a diagnosis and a plan come from a cancer center.  But it’s a relief to have some answers and a plan of action.

The diagnosis:

Ewing’s sarcoma, a rare cancer that mostly affects children and young adults.  Ewing’s is a pretty aggressive cancer.  But, given that, there are several lucky things about Sam’s particular situation.  It seems that the cancer has not spread anywhere else, for example, and its one site (the clavicle) is a bone that is relatively easy to remove.  Ewing’s responds well to chemotherapy. Today’s treatments eradicate the cancer in about 80% of cases.

The plan:

(1) Start chemotherapy, hopefully Tuesday May 10.  Get chemotherapy every 2 weeks, in alternating 2-day & 5-day regimens.

(2) After 8 -12 weeks of chemo (4-6 rounds), have surgery to remove the collarbone and anything else the tumor might have touched.

(3) Continue with more chemotherapy, for a total of 14 rounds.  At some point, depending on how things go, chemotherapy treatments will start to be spaced every 3 weeks instead of every 2 weeks.

Depending on the spacing of the chemotherapy, the total treatment plan will last somewhere between 6 months and 1 year.  During this time Sam, unfortunately, will not be able to play professional rugby.