Things about Sam and Leslie

Cancer is a WILD RIDE! Strap in!

What a crazy week!  We were all super excited about this week.  Well, maybe 90% excited and 10% nervous.  We were pumped about Sam’s blood transfusion.  Each week, Sam gets weaker and more tired.  There’s nothing fun about acting like a sloth.

We were assured that the transfusion of two pints of blood would boost his energy.  We were also told that there shouldn’t be any problems with the transfusion.  I think the exact words were, “I mean it’s rare, but it does happen.”  We had an early start for the blood transfusion so the minute the blood started flowing (slowly dripping), we turned the lights out to sleep.  About two hours later, a nurse came in to remove the empty bag and hang a new pint of blood.  She turned on the lights and whoooooa!  We had a problem.  Sam was covered in hives!

This was only the beginning of the craziness.  Sam was injected with multiple rounds of steroids and Benadryl to try to eliminate the hives and control his adverse reaction to the transfusion.  It took over three hours for Sam’s new look to revert  back to regular ol’ Sam.  The good news was that he was hive-free, but the bad news was that Sam was unable to receive the second pint of blood.  Rats.  If they would have only kept the lights off!  We entered the hospital at 7:00 am and left around 5:30 pm feeling pretty defeated, confused, and frustrated.  Even though a total breakout of hives is not good, we knew that Sam needed the blood.  On the way home, Sam looked at me and said, “How do we even begin to explain what happened today?”

After spending all day Wednesday at the hospital, we were right back at Vanderbilt at 7:00 on Thursday morning.  We really needed good news.  By 7:30 on Thursday morning, we finally heard something that we wanted to hear!  We went over Sam’s most recent MRI with the musculoskeletal oncologist.  Here it is.

How AWESOME is this:

What's Up Now Stupid Cancer!

Sam’s cancer has responded well (awesomely) to the chemotherapy.  Honestly, we couldn’t have asked for any better news.  This was everything the doctors were hoping for.  His surgery is scheduled for August 3^rd.  His surgery will be an intense surgery, but the doctors don’t anticipate any complications.  He will have a majority of his right clavicle removed; some of his rotator cuff cut out, and the doctors aren’t going to be shy about taking out other muscles in the surrounding area.  Here’s some more awesome news:  the surgeon said that Sam should be able to do EVERYTHING that he was able to do before the surgery.  It’ll be several months before Sam is at full strength, but at least we know that the surgery isn’t going to stop him from one day carrying two pizzas and a case of beer up the stairs.  Sam and I were so relieved to hear this.  We’ve been worried for months that we’d have to permanently cancel our friendly (and sometimes not so friendly) racquetball games and put away our mountain bikes forever.  We definitely have a long road ahead of this, but this was the best news we’ve received in a long time.

Just to refresh your memory, this is the plan to cure Sam’s cancer:

We met with the oncologist after meeting with the surgeon and there’s no doubt that she was perplexed by Sam’s reaction to his transfusion.  Sam needed more blood in order to have five days of treatment next week.  What a conundrum!  A team of oncologists, blood bank employees, and people from The Red Cross all got together on Thursday afternoon to determine what might have caused the problem.  I like to refer to Sam as, “a mound of paperwork.”  They all determined that the blood that he received was close to the expiration date and the almost expired blood could have grown something that Sam was allergic to.  Huh?!?!  I guess that’s their specialty, so we’ll go with what they said.  They scheduled Sam for another transfusion on Friday and he is only allowed to have the freshest blood.  Sam deserves the finest even if it is just a bag of blood.

The transfusion today went a lot smoother.  Sam was given steroids at the beginning of his transfusion and they ran the blood very slowly so they could monitor him closely.  He should feel great this weekend.

Calling All O Negatives!

Sam’s blood type is O Negative.  This is a rare blood type.  O Negative is the universal donor, but Sam can only receive O Negative blood.  If you happen to read this blog, live in the Nashville area, and have O Negative blood; please go to The Red Cross and donate.  You will be handsomely rewarded with soda and cookies after you donate.  If you have no idea what blood type you are, please donate anyway.  The Red Cross has a great website that answers any questions you might have about blood donation.  Cancer patients need a lot of transfusions.  Even if you don’t directly help Sam, somebody will feel a lot better after receiving your blood.

More From Our Wacky World

Sam and I are both enjoying his baldness.  We spend a lot of time trying different looks.  These past few weeks,  he has worn a straw hat or a headband.  We don’t go out in public very often, but when we do, it’s a total trip.  Sam has no shame.

When Sam wears his straw hat, I call him a struggling hair farmer.

The Headband Look!

Actually, we both dress like Richard Simmons these days.

Our Latest Nonsense Amazon.com Purchase!

We recently purchased a Kitty Cam!  We spend so much time at the hospital and we decided that it’d be nice to know what’s going on at our home.  We’re able to watch the action live from our computers and we even caught the two of them fighting!  Bad cats!

Check out what goes on while we’re away.  Please forgive the mess.  It’s been a really long week:  Video download link

Sleep-O-Rama!

Sleeping is a vital part of recovery.  Someone or some kitty is always sleeping in our apartment.   Look at Sam, Theo, and BB in (non-)action: Video download link

A Shout-Out To The Mommas!

Thank you both for ALWAYS filling our refrigerator with delicious food, doing our stinky laundry, and helping us in every possible way you can.  We know you worry constantly and work really hard to make our lives comfortable.  I don’t think we could function without the two of you and your superhero superpowers!

This week wore on our patience, but even three full days at the hospital on our “off week” can’t overshadow the news about Sam’s cancer diminishing.  Sam will receive chemotherapy Monday through Friday next week.

We’ve got a long week ahead of us and we’ll need to start getting into surgery mode.  We’ll update the blog in two weeks before his surgery.  Thank you all for reading this blog.

Also, thank you to everyone for helping us so much.  I always look around the hospital and know that Sam is the luckiest cancer patient and I am the luckiest wife of a cancer patient.  Your support is what carries us through our tiring days, sadness, and rapidly changing schedules.  We have such an amazingly intelligent and humorous support system.  You are all our heroes.  We love you.

Thank you for everything,

Sam and Leslie

Another Week Down

After getting an entire week off last week (with the exception of lab work) we had a full two days at Vanderbilt this week.  These two-day treatments are only four hours long, but we had additional appointments this week.  Sam got a repeat MRI on Wednesday.  We expect a lot better results with this do-over.  Here is a picture of his previous MRI.

We will meet with the musculoskeletal oncologist next Thursday.  Ten weeks ago, we couldn’t even pronounce the word musculoskeletal.  After the meeting with the musculoskeletal oncologist, we meet with our oncologist.  We should have a better idea of Sam’s progress next week.  Even though we have a long way to go, it’s nice to know that we’ll get some medical insight on how Sam is doing and how much headway he’s made.  We should also learn about the surgery that he will have in about a month.

This will be Sam after his surgery!

Because Sam has had so many scans and has been put through several different machines (all with complicated and forgettable names) in the last few months, he started referring to machines by the food they resemble.  Certain machines are sandwich machines while others are tacos.  An MRI is a Mega Ridiculous Iced doughnut machine.

 This Past Week

The two-day treatments are nice because we’re at the hospital a lot less, but Sam has some pretty bad side effects with this particular set of drugs.

He’s been feeling pretty weak the last few days and it’ll be a couple more days before he perks up again.  As we go through each cycle, we get better and better at controlling the harsh side effects.  Sam also tries more prescription drugs as we learn more about what works and what doesn’t. It’s reassuring to have more confidence as we go through this rigorous process.  It’s also comforting to know that we can alter the drugs in specific ways to maximize Sam’s happiness and minimize his pain. Sam is currently taking two million different medications.  He even takes medication that medicates his medication.

We’ve come a long way since his first treatment.  I think we were at home for only 15 minutes after his initial treatment before we were frantically calling the oncologist’s office asking questions.

Next Week

Next week should be an informative and helpful week.  In addition to the two meetings, Sam should receive a blood transfusion (there’s a chance he might not need one).  A blood transfusion sounds a lot worse than it actually is.  Getting a transfusion takes several hours, but it should really help Sam.  His blood counts get lower and lower each week.  New blood will combat his anemia and relieve him of some fatigue.

The blood transfusion should help Sam’s color. He’s pretty pale these days.

Sam Is Famous!

A couple of weeks ago, this blog was put on the I’m Too Young For This!  blogroll.  Here is what the I’m Too Young For This! Cancer Foundation has to say about themselves:

A TIME Magazine Best 50 website and FOX News Top 10 Healthcare Blog, we support a global following and hundreds of  thousands of friends, fans, readers, listeners and members. Since our launch in 2007, we have helped bring the cause of ‘cancer under 40’ to the national spotlight and rallied a brand new crop of activists to give a much needed voice to our forgotten population.

We have a lot of time to read these days and have thoroughly enjoyed reading other blogs and articles on this website.  It’s freaky how similar all of the blogs are.  Sam and I always laugh when we discover that someone else has the same quirky habits or rituals as us.  If you have any free time, we can recommend this website.  The blogs are all impressive.

Every single day, Sam and I talk about how lucky we are.  There’s no doubt that cancer totally sucks, but we can’t do anything about that.  A lot of our days are exhausting and stressful.  Everyone makes our life so much better.  We can’t imagine going through this without the unwavering assistance.  We used to only receive bills in the mail.  Now, going to the mailbox is an exciting adventure.  Our mailbox is consistently loaded down with entertaining gifts and thoughtful cards.  I have to bring a pack mule with me to the mailbox.  Thank you for filling our days with humor and love.

All of the mail weighs down our pack mule.

We are eager about next week’s appointments and expect for Sam to have a stellar progress report.

Lots of love,

Leslie and Sam

P.S.  Senseless pictures:

Brazilian Tarp Hats

We Finally Found Organic Bacon!

We were cautiously optimistic about this week.  I would have to say that this week turned out to be a solid week.  It was a pretty normal week with the exception of daily shots, a bajillion medications, and Sam’s fatigue .  We both worked every day this week.

We had a lot of fun working on this blog together.  We’ve created some charts that detail our new ways of life.  To get a better look, click on the graph.  Hit the back button to get back to the blog.

Where Did All Of Our Money Go?

No More Manners…

Pillow Fight!

Clueless

A Sincere Thank You To Everyone

This week enlivened us.  We’ll use this long weekend to relax and eat.  Sam is scheduled to have chemotherapy on Tuesday and Wednesday of next week, but we’ll worry about that next week.  For now, it’s time for food and fun!

HAPPY FOURTH OF JULY!

With a lot of love and appreciation,

Sam and Leslie

P.S.  Sam making the graphs:

P.P.S.  We actually bought two Brazilian tarp hats.

Towards the end of last week, we were all a little bummed about Sam’s lab work.  Because his neutrophil count was so low, he wasn’t able to finish out the workweek in the office.  We feel very fortunate that Sam is able to work from home.  He says that working at home is a lot like being in the office except for no pants and kitty butts.

No pants, a kitty butt, and a pee sign all in one picture. Beautiful!

On Monday, Sam got his labs drawn and his neutrophil count had soared over the weekend.  I think we can attribute this success to Neil’s visit and all of the meat and pizza that the Bledsoe boys consumed.  Brotherhood is synonymous with eating. We had a lively weekend with Neil and the entire Bledsoe gang.

Weekend Food:  gelato, crepes, omelets, bacon*, ribeyes, pineapple upside down cake, brisket, chicken wings, Thai pizza, Hawaiian pizza, and veggie pizza with sausage

*Over the weekend, Sam led a discussion on the most superior brand of bacon.

Two handsome dudes.

2011 Survivors’ Day

This past Saturday, Vanderbilt University hosted a Survivors’ Day Conference and Celebration.  The conference had endless information, inspiring videos and speakers, and hundreds of survivors including Vanderbilt’s youngest survivor who is eight months old and their oldest survivor who is 86 years old.

The keynote speaker was Lance Armstrong’s mother, Linda. She is a tiny southern woman from Dallas, Texas.  With her thick southern accent, she entertained us all for over an hour as she recounted her son’s unbelievable struggles and triumphs and the importance of attitude.  At 26, Lance Armstrong was diagnosed with stage four testicular cancer.  The abruptness of Lance Armstrong’s diagnosis and the immediacy of his treatment is very similar to our story.

As she addressed the audience, she stated that we were all members of a club that we didn’t choose to be a part of.  I found it comforting to listen to her speak about the harsh transition from leading a normal life to the daily struggles of taking care of her sick son.  She was genuine and inspiring.  I think she made everyone in the room laugh and hold back tears of sadness.

On a somewhat unrelated and slightly inappropriate note, Linda Armstrong Kelly said these words (you have to read this with a strong southern twang), “At age 17, I weighed only 100 pounds and gave birth to Lance who weighed 10 pounds.  It was like plucking a pear out of a brandy bottle!”  I had never heard this expression before.  I feel as if I will always associate pears with a grueling childbirth and will no longer find pears as appetizing as I once did.  Sorry to ruin pears for you also.

Here is a short interview of Linda Armstrong Kelly at the conference.  For some reason, her accent isn’t as detectable.  I think she was trying to sound more professional during the on-camera interview.

Tara and Leslie

My best friend, Tara, has an ability to find fun in everything.  She is all about celebrations even if kegs aren’t present.  She happily agreed to wake up early on Saturday to attend this conference and celebration with me in miserable weather.

Tara was at the hospital minutes after Sam’s diagnosis playing the role of the comedian and when Sam was hospitalized, she brought the party to the hospital.  Her loyalty, compassion, and 3:00 am karaoke skills deserve a lot of praise.

Cancer is not the only thing these guys have in common!

Sam and I love to ride our bikes.  We used to spend every weekend going to different parks all over Tennessee to ride our mountain bikes and eat at the local restaurants (first ride bikes…then pig-out).  We are both upbeat about being able to ride and wear ridiculous biking outfits together in 2012.

The Real Reason for This Blog

Sam had 30 hours of chemotherapy this week.  Thirty hours of chemotherapy equates to about 40 hours of hospital time and five hours of driving.  The logistics are the easy part.  Because this team (we’ll call it Team S.A.M.-Sarcoma Annihilating Machines*) is so amazing, none of the logistics are hard or complicated.  Our refrigerator is consistently filled to capacity and the Bledsoe bunch is always there with Sam when I have to be at work.  Team Sam rocks.

*The only other M word I could think of was marsupials.  I thought machines made more sense than referring to us as a team of wombats.

We were all so happy that Neil could accompany Sam on Monday.  The chemo nurses were tickled about the two of them playing Xbox together in Sam’s room.  Apparently, nobody has ever brought an Xbox to the infusion center.  How lame.

This week was a little draining.  The cumulative effects of the last two months seem very obvious.  It’s tough to sit in the hospital for so long and not feel emotionally overwhelmed.  It’s hard to believe that we were so carefree and merry only two months ago.  We definitely still have our unique spunk, but some days it’s easy to feel overrun.

Physically, the days are a lot harder for Sam.  Getting up the stairs to our apartment has become a long and dreaded process.  His appetite has been holding up, but his energy level has dropped significantly.  None of this is surprising, but it can be saddening to witness.  About three or four days after treatment, he perks up some, but nothing near 100%.

We are expecting the next several days to be trying.  The last time Sam received this much treatment, he was hospitalized the following week.  We are prepared for whatever might come our way and maybe we’ll be pleasantly surprised with a low-key week.

Everyone makes this a lot easier on us.  Thank you.  We all know that the next several months are going to be difficult, but we’ve got to go through them together.

Infusion Center Paperwork

Sam has to fill out this smiley face sheet each time he receives treatment. We think it could use a little pizzazz!

Hospital Highlight of the Week

We got a visit from a therapy dog! Her name is Maddie. She loves visiting cancer patients and never gets tired of all the attention.

Mother’s Day and Father’s Day

In the midst of all of this chaos, two very important days passed quickly and with very little festivity.  Both Mother’s Day and Father’s Day weren’t as heavily emphasized as they should have been.  Mother’s Day fell right after a surgery and Father’s Day landed near a neutropenic isolation time.

To both sets of parents-You are incredible.  We notice everything you do and know how much time and energy you spend making food, writing emails, going grocery shopping, running errands, and the countless other chores and favors you do for us daily.  Whether it’s a quest to find organic bacon or trudging up forty steps in the 95 degree heat to try to unclog our hair-filled drains (gross but true), we thank you. Our brothers and sisters have this same eagerness to help, thoughtfulness, and love.  You are the best mothers and fathers. Your love, support, and humor is the glue that holds this entire operation together.  We love you so much.

Love always,

Leslie

This past week was similar to a standard (pre-diagnosis) week.  It was the most routine week we’ve had since March.  On Sunday, Sam’s nasty side effects subsided and that marked the beginning of a lot of fun, food, and some normalcy.  Granted, our lives are very different these days, but we’ve adjusted well and we’ll happily take advantage of an illness-free week and a week in which we only have one appointment at Vanderbilt.  This is the first post to be typed on our desktop computer at home.  Every other post has been typed while sitting at Vanderbilt Hospital.  Finally, we’ve been able to relax and hang out.

Similar to BB’s new favorite position, our schedules for this week were wide open.

Oncology Talk

Two weeks ago, the oncologist had mentioned cutting Sam’s five-day treatment to four days to reduce his chances of neutropenia which would reduce his chances of being hospitalized with a neutropenic fever.  Sam didn’t want to reduce his treatments even if it does mean that there is a chance that he’ll be back in the hospital the following week with a neutropenic fever.  Dr. Keedy agreed to give him another chance at the five-day treatment and prescribed antibiotics that should help rid his body of some of the bacteria that could induce a neurtopenic fever.  The antibiotics were prescribed as a potential preventative solution and we’ve been advised that there is no guarantee.

We met with the oncologist this morning.  Sam is scheduled to receive 30 hours (Monday-Friday 6 hours each day) of chemotherapy next week, but we are not entirely sure if it will be next week or the following week that he will receive this treatment.  He got his labs drawn this morning and his neutrophil (special disease-fighting white blood cells) count is extremely low.  He’ll get his labs drawn again on Monday to see if he can begin treatment on Monday (June 20^th).  If his neutrophil count is still low, he’ll have to start the five-day treatment on Monday June 27^th.

Despite the news this morning, Sam has had a great week, if only his white blood cells would cooperate!  These next few weeks will be challenging.  The thirty hours of chemotherapy (Infuseapalooza) is actually the easier week.  It’s the week after the infuse fest that can be difficult.  We are both upbeat and convinced that we can handle any problems that may arise.  We are also hopeful that the treatment will start on this coming Monday.

One of the highlights of our meeting today was getting a handicapped placard for the car.  Sam becomes winded easily and every ounce of energy that he can save is critical to his healing, limited work schedule, and overall happiness.  Being tired all the time is no fun and being able to park super close to everything is a lot of fun. He even got his own assigned spot in the very front of our apartment building.

27 is the new 75

Besides our meeting with the oncologist, it was a typical goofy week for the two of us.  Here are some of the highlights:

Hat Euphoria

When facing baldness, it is necessary to find the one hat that you will always enjoy wearing.

Criteria for choosing the perfect hat:

1.     Your wife must think the hat looks foolish.

2.     The hat must be a dirty hat that was found by your father in the grocery store parking lot.

3.     After Googling, “What type of hat is this,” you must discover that the hat has a cool name like, “beanie visor.”

Once you have found a hat that meets all of these specifications, go to the appropriately named online silly hat distributor:  DogFunk.com and order an identical hat for your wife.

DogFunk.com Models

Warning: Beanie visors lead to a  state of total bliss.

Beanie visor bliss.  Everyone should have such a ridiculous hat.

Mr. Magoo Sighting

One of our favorite chemo nurses once told Sam that he looks like Mr. Magoo.  I’ll let you decide.

Must Keep Eating!

Sam ate so much food this week.  It was wonderful to see his hearty appetite back in action.

A good friend made Paula Deen’s macaroni and cheese for Sam.  It was made with:  cheddar, swiss, jack, colby, muenster, gouda, sour cream, eggs, butter, and more butter.  Because this side dish seemed too low in fat content and calories for Sam, he insisted that we add bacon to the dish.

In addition to the macaroni heart attack, we had the pleasure of eating crepes over at the Bledsoe household with Sam’s Uncle Jim.  Jackie played the role of the crepist and made some delicious crepes that were fit for a king.

That’s about it for the week.  Food, antics, work, and family helped raise our morale and will help propel us as we prepare for the next two weeks.

We are sincerely grateful for all of the kindness and support that surrounds us.   I know we’ve used the word awesome before, but it’s the best word to describe all of our friends and family.  You all enrich our lives.  Thank you.

Love,

Leslie

P.S.

The pitfall of blogging at a desktop!

Sam recovered quickly after our 48-hour retreat at Vanderbilt and we were able to eat at a Japanese steakhouse on Saturday.  Because of Sam’s low white blood cell count, he has been instructed to avoid crowds and especially children. We all know that hibachi grill restaurants specialize in teenie-bopper birthday parties, so we chose to sit in an isolated booth.  Even though we missed the onion volcano and the dramatics of lighting the grill on fire, we didn’t miss having to sit by several 13 year-olds gossiping about Justin Beiber’s new haircut.

Sam received chemotherapy twice this week. Admittedly, I was apprehensive about this week, but Sam was ready to keep on keepin’ on.  Sam is resilient.  This whole chemo thing isn’t easy.  It knocks him down, makes him sick, and about the time he’s feeling better, it’s time to start with the treatments again.  We expect a lot of fatigue, nausea, and hiccupping over the next few days.

Sam’s mom, Jackie, loaded us down with homemade applesauce and several homemade broths, soups, egg salad, ginger tea and sweet potato bites. This was all Sam ate throughout the week. The food was heavenly and it helped Sam’s spirits and aided tremendously in reaching his daily calorie and protein goals.  We refer to the mouthwatering food she makes as, “Jackie Food.”  Here’s how to use it in a sentence:  “Hey, do we have any egg salad left?”  “No, go get your own Jackie Food!” (use this response while eating the last of the egg salad)

Ensure Hijacking =

*Chemo Nurse Spotlight Award*

Andrea

Andrea was Sam’s chemo nurse on Tuesday.  Like all of the chemo nurses, Andrea is nice, smart, and funny.  Most importantly, she treated Sam like the rock star that he is.  We told her that we use Ensure as a protein supplement for Sam.  She recommended that we buy the chocolate Ensure and put it in a blender with ice cream, peanut butter, and Oreos.  After giving us the recipe for deliciousness, she handed us a booklet of 15 Ensure coupons and sent us home with nine bottles of Ensure.

This is our auxiliary refrigerator (aka our beer fridge).  It is now filled with Ensure, Sprite, Ginger Ale, and shots.

Our New Best Friends

Here are some of our Ensure-loving friends!  They come over once a week to play bridge.

Chemo Perk!

This is the snack and beverage cart that rolls around the infusion center.  A nice volunteer frequently goes from room to room offering tantalizing snacks to cancer patients.  Here’s a snack and beverage cart tip if you ever find yourself in a similar situation.  Innocently and politely ask the volunteer for a cup of ice.  In order to retrieve the ice, the volunteer has to go to the ice dispenser machine that is conveniently located down the hall.  Once the volunteer has abandoned the cart, grab an extra oatmeal cream pie or two.  Lastly, give a heart-felt smile when the considerate volunteer returns with the cup of ice.  The volunteer never suspects that there is a Little Debbie thief on their hands.

Chemo Lingo

The tube that connects to Sam’s port is referred to as his, “pig tail.”  A chemo nurse will tape his pig tail to his chest when his infusion is finished for the day and he is scheduled to return the following day.  Though it sounds odd, it’s always nice to hear, “It’s time to tape up your pig tail.”  Oink!  Oink!

Just in case that last paragraph was confusing, the tube is shaped like a pig’s tail.  Not pigtails.

No!

Yes! Sort of.

Sam only has one pig tail, but (butt) since we were on the subject of pigtails, I thought I’d add to the ambiguity and I wanted an excuse to post this gross picture.

Crank Up The Volume and Enjoy Two Short Clips From Our Weird New World

The last couple of months have been filled with uncertainty, uncharted waters, and a non-routine lifestyle.  The easiest way to get through a day is to:  be flexible, take notes, listen, be patient, love, show gratitude, learn, and just laugh.  Throughout the last two months, we have seen and heard things that we never thought would be a part of our lives.  We have to accept new norms.  Perhaps our strangest new norm is the ongoing saga of the hairy tape wad.

In all seriousness, the easiest way to get the remaining hair off of Sam is with the lint roller.  The sticky tape lint roller intrigues both of the cats.  The rolling process involves timing and swatting.

The swat and grab! Click on the link to see BB in action.

Even more exciting than swatting at the lint roller is knocking over the trashcan to forage for the strategically hidden hairy tape wad.   Once the hunt is over, it’s time to attempt to eat the hairy tape wad.

Hairy Tape Wad Munchfest Click on the link to see BB in action.

Cats are definitely ridiculous but loving.  No matter what Sam is doing, both Theo and BB always seem to be keeping an eye on him

Linear Eavesdropping

Kind of sweet. Kind of creepy.

We expect the next few days to be a little rocky.  We will visit with the oncologist on Thursday (June 16^th) to make sure Sam is able to continue with his five-day treatment scheduled for the following week.

To everyone-thank you, thank you, thank you.  We smile whenever we hear about people reading this blog.  Everybody plays an integral part in this journey.  Whether it’s through prayer, food, comments, emails, or support for our parents, we thank you from the bottom of our hearts for your love.  Even though we strive for humor and positivity, we do have long rough nights and early mornings.  We feed off of the energy and support from everyone, so again THANK YOU.

Love,

Leslie

Just when I thought there was going to be no juicy material for this week’s post, Sam took one for the team and made it interesting!

We had a rather successful Memorial Day weekend filled with rest and food off the grill.  Everything seemed to be going surprisingly well.  Sam went to work on Tuesday but had a restless night on Tuesday night.  We’re accustomed to the restless nights, so Sam went about his normal daily routine on Wednesday.  He wasn’t feeling well and had to leave work around noon.  When I arrived home around 4:30 on Wednesday evening, Sam was sprawled on the bed with his lunchbox and the contents scattered on the bed.  The goods news was that Sam was making a lot of effort to eat.  The bad news was that he was attempting to eat horizontally.  The even worse news was that there was a half-eaten sandwich, nuts, applesauce, and crumbs occupying the bed that our cats helped themselves to.

We have been told repeatedly since the beginning of Sam’s chemotherapy that a temperature of 100.5 is serious and that Sam would need to be quickly taken to the hospital if his temperature reaches 100.5.  On Wednesday evening, we took his temperature and it was 100.5 on the dot.  Perfect!  Not, “Yay!  Pop the champagne!”  But, “Ok, we’ve been strictly informed on what to do if this happens.”  We took a moment to gather some things that we would need in case we had a long stay at the hospital, but in the state of panic and tiredness, left all of them at home as we rushed out.  Forgetfulness is another thing we are accustomed to.

You know in the movies when a pregnant lady’s water breaks and then a man puts her in the car and drives like a maniac in an effort to rush the screaming pregnant lady to the hospital?  I got to be that man and Sam’s water had just broke.  We sped off with our powerful V4 engine and drove in the left hand lane down I-65.  Weeee!  I even had the opportunity to blatantly run a red light and I totally seized the moment and did it!  How thrilling!

The emergency room at Vanderbilt was flooded with all types of people and craziness.  Aghhhh!  We learned that Vanderbilt is the only level one trauma center in Middle Tennessee and provides trauma care for 65,000 square miles.  Total madness.  Fortunately, it is not safe for patients receiving chemotherapy to be among all the sick people and lunatics.  Because of Sam’s weak immune system, we didn’t have to wait long to get a room in the emergency department on the trauma floor.

This was Sam’s trauma room. After a while, we gave in to our temptation and started playing with some of the medical equipment.

They drew blood and got a urine sample from Sam.  A few hours later, we were informed that Sam’s neutrophil count was low.  This is called neutropenia.  A neutrophil is a type of white blood cell that fights off infections and diseases that enter the body.  The doctor told us that Sam must be admitted to the hospital.  The plan was:

1. Find the source of infection that is causing the fever
2. Treat the infection
3. Boost Sam’s neutrophils
4. Keep him fever-free for an extended period of time

Sam was put on IV antibiotics, pain medication, and a white blood cell booster for his neutropenia.

This was displayed on the outside of Sam's room.

What it really means:

The doctors and nurses kept telling us that they were doing everything they could to transport Sam into a positive pressure room on a different floor. Positive pressure areas are used in specific hospital rooms as a way to keep particle contamination from entering the room. The principle of positive pressure is to supply an area with enough clean, filtered air to keep contaminants from entering the room.  Unfortunately, Vanderbilt was overcrowded and didn’t even have a single bed available on another floor.  The trauma room became our home for the next 24 hours.  Luckily, a trauma room is a positive pressure room.

Throughout Wednesday night and early Thursday morning, the trauma floor was absolutely chaotic.  There was nonstop beeping and quite a bit of groans and screaming.  We never left the room.  On a happy note, a trauma nurse told us that Wednesday night was a successful night in all the cases they dealt with.

We entered the emergency room at 6:30 on Wednesday night and were moved to an isolated room on the general medical floor on Thursday around 8:00 pm.

Our new luxurious accommodations

Sam’s new room was located near the helicopter landing pad. Initially, we found this exhilarating. At 4:00 am, we both found it annoying.

On Thursday night, Sam’s neutrophil count shot up and his fever subsided.  Hallelujah!  Even though we were told on Friday morning that Sam would have to stay an additional day to be monitored, our oncologist called the hospital and told them to discharge Sam.  She did this based on the fact that his neutrophil trajectory was on the rise and she didn’t think he was at risk.  This came as a total shock to us.  Our oncologist deserves a major fist bump.  Around 3:00 on Friday afternoon, we were free!

Do they really have to enforce this policy? We made a break for it the second he was discharged.

Our celebratory discharge picture.

All of the doctors, nurses, and hospital staff were attentive and very personable.  It seems as if Sam had a textbook case of a netropenic fever and it just takes time to get a handle on the infection and boost his white blood cells.

Aside from the hospital drama and increasing Sam’s neotrophil count, our focus for the week was food.  It is important for Sam to eat as much as he can on his off weeks.  Despite the nasty hospital food, Sam was able to eat a lot this week.

Unidentified brown meat patty thingy.

Sam ate a variety of delicious foods throughout the week.

And was able to gain A LOT of weight!

Throughout the diagnoses, treatment, and this past week in particular, I am reminded of how brave and patient Sam is.  No matter how many times the doctors stick a needle in him and tell him about worrisome side effects, he remains calm, confident, and loving.  He’s always had a positive attitude and that attitude is what helps us react accordingly and gets us through each day smiling.

Thank you all for the thoughtful comments, emails, and phone calls.  All of the comments and thoughtfulness energize us both.

Our mission for this weekend:  Get Sam well enough to eat at a Japanese steakhouse.  Cross your fingers for the onion volcano!

As far as next week goes, Sam says he’s ready to go!

With love,

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.