Wednesday, April 27, 2011
When Mike and I were talking about how he looks forward to being able to ride his bike again - not just the figurative ride he has been doing on MikesLongRide - he reminded me that he got his beloved Klein bike ten years ago this month! The photo above shows Mike at the end of a 100 mile ride he did on his 50th birthday almost 5 years ago. For those of you who read mike comments on the ride. post back on March 30th, you know that it has been on Mike's Bucket List to ride his bike across the United States. This blog got its name because he figured that his cancer journey would be a similar challenge. Note: He underestimated the severity & intensity of a cancer journey! We often laugh that his bike has held its value better than a vehicle. I honestly think he could sell his 10 year old Klein for more than I could get for my 15 year old Expedition! ha. Happy Anniversary to Mike's other ride.
Lest you picture us with our feet propped up reading a book, we are excited to be planning Mallory's graduation party in just over two weeks. For those of you reading this outside of small town rural Nebraska, high school graduation parties in this area are the equivalent of a wedding reception! The invitations are designed and will go in the mail this week, the menu & party plans are in the works, and I am especially excited to be working on Mallory's StoryBook album. It will be exciting to have this big celebration behind us when we head to St. Louis for our surgery follow-up appointment with Dr. Haughey on May 17th. Mallory graduates on May 15th. (I write down the dates because I have been forgetful. Everyday I say "Lord, show me what to do today. I need You.")
It seems amazing to us that Mike's surgery was three weeks ago yesterday. In some ways it seems like three days ago, in others like three months ago. It has been so encouraging to have so many people come up to us and thank us for keeping them in the loop with the blog... and it has been so encouraging to know that people are still praying for us. Is it possible to be prayer-dependent? Hope that a good thing. Smile. Here is a little report on the patient: Mike started back to work part-time this week. Jackie, Cathy, Scottie and Kelly are keeping him out of the animal rooms and focused on facilities issues & desk work. Yesterday he shared that he loves being back at work because it helps him to feel more normal, even though he can't physically work like he loves to. He is counting the days until he can, even though we have no real idea when that will be. He works very hard to eat consistently and well, which takes more energy than you can imagine. When he put on his dress clothes for church over the weekend, Mike said he felt like a boy dressed in his dad's clothes - and it was true! It looked like he couldn't quite fill them out yet... everything looked a bit baggy. Other than that, he looks amazingly good! Poor guy has a lot of discomfort and aches with the nerves healing in his neck, and from the hit his body took from so many days immobile in a hospital bed. (Hip pain, shoulder stiffness - not to mention all the stuff that is still healing in his mouth & tonsils.) Mike never complains and bears through it, but I can see it on him. He refuses to take more than Alleve at bedtime. This is just the journey on this part of the trip. He is an amazing fighter.
Thursday, April 21, 2011
Amy Sternberg is a beloved friend. She will always have a special place in my heart because 1.) she walked beside me even when my life was dark & messy and she helped me get my spiritual legs under me again - and 2.) she set an example for living & dying with cancer with honor & dignity.
When we were in St. Louis for Mike's surgery, I visited Amy's husband Bob and "the girls". Bob gifted us with a packet of 140 pages of things that Amy wrote during her cancer journey before the Lord called her Home in October of 2006. We want to use MikesLongRide as a place to post things we have learned about cancer that might be helpful to others, and we would like to share Amy's wisdom from time to time. Amy fought the cancer fight beautifully and encouraged many along the way.
Amy: There is a wonderful metaphor of suffering producing pearls, like the 'pearl of great price' that is spoken of in the Bible. I imagine us in Heaven, admiring each other's gorgeous strand of pearls - like Jackie Kennedy's classic pearl necklace! - and you will point to mine and say "I remember when you got those pearls! That was when you had cancer." And I will point to an especially exquisite pearl of yours and say, "I was there when you got that one! That was when you "- (fill in the blank: lost that job, got divorced, had a medical crisis, dealt with rebellious children, lost your parents, faced a difficult challenge, etc.) We will be wearing the precious jewels that were formed during our hardships on earth. And God will reveal the greatest wonder of all - the beautiful truth that we not only will be wearing jewels, we will become jewels which He Himself will wear: "You will be a crown of splendor in the Lord's hand, a royal diadem in the hand of your God." (Isaiah 62:3) Written by Amy Sternberg in an email September 2006
What a great reason to ponder one of my favorite hymn lines of all time... "My sinful self my only shame, my glory all the cross."
Mike and I marvel at God's goodness & faithfulness to us. We marvel at the love and support of friends & family. We don't deserve any of it. It is Amazing. It is Grace.
Beneath the cross of Jesus I fain would take my stand,
The shadow of a mighty rock within a weary land;
A home within the wilderness, a rest upon the way,
From the burning of the noontide heat, and the burden of the day.
Upon that cross of Jesus mine eye at times can see
The very dying form of One Who suffered there for me;
And from my stricken heart with tears two wonders I confess;
The wonders of redeeming love and my unworthiness.
I take, O cross, thy shadow for my abiding place;
I ask no other sunshine than the sunshine of His face;
Content to let the world go by to know no gain or loss,
My sinful self my only shame, my glory all the cross.
(Fun to know: The photo is from Tom Vespa's garden in 2006.)
Wednesday, April 20, 2011
Because of Mike's restricted diet (pureed and now soft) we have had to depend on protein drinks to supplement Mike's protein & amino acid needs. We thought you would like to know that ORGAIN is Mike's hands-down favorite and we have tried every protein & muscle drink out there!We were pleased to notice this message today on the back of the bottle: "I developed Orgain with one simple goal in mind - to create the healthiest drink in the world. As a cancer survivor and practicing physician, I have experienced first hand the benefits of organic, wholesome nutrition. I spent years formulating the perfect blend of organic protein, organic complex carbohydrates, fiber, and a synergistic immune and vitamin blend to create Orgain. Whether you don't have time for breakfast, need a replenishing post-workout shake, fighting an illness, or just need a healthy snack between meals - Orgain is your healthiest choice." Andrew Abraham, M.D. I am happy to report that Mike turned a corner on Sunday with his ability to eat a greater variety of soft foods. He surprised me by eating the noodles and spinach pieces in his soba soup, and now manages chicken and salmon with mashed potatoes, scrambled eggs, chicken soup, some breakfast cereals - and my cookies (softened with hot tea). Last time he weighed he was up seven pounds! I am so proud of how hard he has worked to maintain a strong nutritional intake.
Tuesday, April 19, 2011
Re-entry back into "normal life" has not been as smooth a ride as we thought. I think this is mostly because both Mike and I are more exhausted than we even begin to understand. Completing simple tasks around the house is a huge challenge. Simple things like showering, dressing and eating tire Mike. It doesn't help that the weather back here is Nebraska has been dreary, rainy and very cold. (With Mike's 19 pound weigh loss he has been a bit chilly anyway. ) It is hard to grab a winter parka in April even though the temperatures are in the 30's! Part of the discomfort is that Mike is still not sleeping well at night even though he is exhausted. We do believe that the anesthesia and drugs continue to linger in his system in amounts that are still annoying. We are thankful to have Tara Currier, our massage therapist from our Little House Day Spa to call on for him. She feels we should do only 30 minutes of massage every couple days so we don't overwhelm his system as we try to move the crud out of Mike's system. We are going to try a sauna at the YMCA today as well. I have "sympathy symptoms" for everything that happens to Mike, so I am riding slowly right next to him. I am thinking that it is also a challenge to come out of a life & death situation where you are living almost in another dimension... very much on a spiritual plane where all of your strength and energy comes from outside yourself. It is time for us to move slowly back into our daily lives, but it is slow and laborious. I am fairly confident that there is a very good chance that this post makes no sense at all, but therein you might appreciate the place we are in. I needed to try to write this down for myself, to mark this unique part of the journey. Your continued prayers would be appreciated if you are able to lift them before the Throne.
Saturday, April 16, 2011
It was a safe trip home yesterday... but it was stinking cold. When we saw a snow plow between Fremont and Oakland we knew we were in trouble.
Yes, the Vespas awarded me with a St. Louis "Half-Marathon" Brooks running shirt for my efforts as the caretaker for marathon-man. So yes, we proudly wore our new shirts on the flight home.
This post is here in honor of my sweet daddy, Jerry Wallerstedt. Though he went HOME this past July, he continues to live large in our lives. The above photo is not to tell you that we stopped at Cardwells on Wednesday for nourishment after we found out our soba soup spot was closed, but for you to notice the "spit bottle" sitting at Mike's left foot. Sweet Mike has learned to swallow most of his saliva, most of the time, but when he needs to save some swallowing energy for food intake he uses a spit bottle. You get the picture (and I'm sorry for that.)
But for those of you who knew my daddy, he used a spit bottle during the last year of his life and this brings back some good memories. Dad wasn't quite as discreet as Mike is, and that "rough around the edges" was part of his charm.
Anyway, I thought it was time for some Jerry memories. Thankfully for Mike, it was my dad who gave me lots of experience with hospital stays and pee jugs.
One of our greatest treasures is a video we had made of my daddy just weeks before the Lord ushered him to his heavenly Home. Enjoy the 10 minute video tribute and learn some words of wisdom from a great man... http://www.bandbvideo.com/Jerry
Thanks for the memories, Daddy.
Friday, April 15, 2011
I first heard Igor & Lena Yaremchuk's amazing life stories at a Missions Conference at Central Presbyterian Church in St. Louis about 20 years ago. The cool thing is that our church in Dallas supported their work in the Ukraine too, so I got to see them almost once a year even after we moved. "Coincidentally" I was in St. Louis for business during last year's Missions Conference at Central and got to spend time with Igor & Lena in 2010. I was delighted to be able to make a digital StoryBook wedding album for their daughter Victoria because they only had these beautiful photos on CD. Believe it or not, "coincidentally" the week that Igor & Lena were in St. Louis this year was the same week that Mike & I are here. On Wednesday night last week when my dear husband was sedated and on a ventilator (will that ever get easier to write?), I ventured to West County to have dinner with Igor & Lena at the Mayfields. It was rejuvenating and therapeutic to share stories and laugh. I didn't like straying far from the hospital but for the Yaremchuks I did.
Yesterday, Sharon Mayfield dropped off copies of a new book about their lives called "Beyond the Rapids" by Evelyn Puerto which is available on Amazon.com.
By the way, we don't believe in "coincidence". Our greatest comfort is that we believe that God's sovereignty extends to every molecule.
It has been sweet to decorate our "home away from home" with the flowers we have received. From top to bottom Mike got flowers from: Kelly & Marcie and Mike's Work Family, Kiley & Andy, and His Siblings & Mom.
The flowers at the bottom were sent to Janice & Tom from Mike's girls in appreciation for taking such good care of us!
I am shocked at how tame Mike's almost six inch scar already looks. I am kinda of disappointed. I thought he totally pulled it off when it looked "knarly". It think it is going to be hard to see in no time. Glad I at least have pictures of the wicked version. (The scar is from lymph node removal. The scars from the primary mass removal are all on the inside since Dr. Haughey used the Steiner scope to reach the area through Mike's mouth.)
Thursday, April 14, 2011
Speaking of amazing medical care, Dr. Haughey was gracious to see us in his office today between surgeries so he could check Mike again before we fly home to Nebraska tomorrow. He scoped Mike through his left nostril to view the surgery area. We were pleased to hear him say "It's healing very well. There's a nice bed of granulation tissue forming. (Translated: the body is filling in the area with new tissue before the outer layer heals over.) The surgical wound looks as it should." We (cancer patient & cancer coordinator) had a little disagreement about what "light physical activity" meant, so that was one of the questions we brought to the appointment. Mike is not to lift (or move or push) anything heavier than 10 pounds and should avoid any jarring activities. When he remembered that Mike works with large animals he asked if he needed a note for his employer. Mike told Bruce that his employer (Dr. Kelly) had been more than gracious about this... and I wanted to add - and Jackie will watch out for him when he is back at work! Dr. Haughey saved me a lot of energy when he added as he went out the door "Now there can be secondary bleeding in this critical period and if that happens, get yourself to an emergency room and call me on the way." Now I can rest assured that Mike is not going to take any stupid chances. (Thank you Dr. Haughey!) I am guessing that maybe he could work at his desk at work in about two weeks. We will see Dr. Haughey again after Mallory's graduation on May 17th and Bruce will give him the nod for more normal work-related activity at that time. Mike did lose 3 more pounds by the same scale today, so I would say that his full-time job these next two weeks is "putting on the feed bag".
On the Tuesday night before we left the hospital, we were privy to our doctors schedule because we knew they would stop by our hospital floor after finishing in the operating room. On this particular day (and night) Dr. Haughey and his team started a surgical procedure at 7:30am and finished it at 9:30pm. Really! A 14 hour procedure. It was actually scheduled until midnight but finished at 9:30pm and the resident & intern docs were up to the hospital floor by 10:30pm. Amazing. In some of Dr. Haughey's more complicated surgeries like this, he takes tissue (including nerves) from another part of the body and graphs it into the reconstructed head & neck area. He actually re-sews the individual arteries and nerves back together, which is why the surgeries take so long. We stand amazed at his skilled and loving care. We stand amazed that in God's good Providence our journey took us here to him. And we also understand why on our pre-op visit to his office Bruce said "We can take care of this. It is what I do all day... and night." We get that now.
This is Mike writing today. I told this story to Karen, Janice & Tom at dinner and they asked me to post it. Have you ever prayed for protection for someone by asking God to encamp angels around them? I often do for Baker serving in Afghanistan. If you prayed that prayer for me during the "Grand Canyon" part of my Ride then I have a vivid picture of what that looks like. Just off the ventilator in the post-op observation room, my hospital bed was a sea of movement. The bed moved to relieve any pressure points , the air pillows under my legs inflated and deflated and that was all very understandable to me. Even through the morphine I could see the mechanics of that but I couldn't understand how the nurses could be using the tender wisps of light to caress my face and throat to the point I would swallow and then it would all start over. I thought they had me connected to a computer and it was one of the nurses jobs to insert their hands into mittens and through the computer send electrical signals to any number of wires connected to me. As they moved the mittens, at the computer console, it transmitted the most delicate sense of touch to my neck, head and throat. I'd wait for the wisps of light to work their way up to my throat and gently coax me to swallow. Just having trans oral laser microsurgery done by the country's top surgeon, it came as no surprise to me that Barnes-Jewish Hospital would also have such advanced technology for head and neck recovery. I became convinced that the computer console behind the curtain, next to my bed, was the place where this was controlled. I was so convinced that I purposed to question one of the nurses, as soon as I could talk, that is. My chance came and I asked the nurse if she was manipulating the computer. She said, "What?" I thought, "Well, she probably couldn't understand me since I talk like I have a sock stuffed in my throat". So I repeated the question and she scowled at me said "No!" and went about her duties. I was a little scared to look behind the curtain. I guess I watched "The Wizard of Oz" too many times to know that I wasn't suppose to pay any attention to that person behind the curtain. When I finally got ready to move to my room I happened to glance behind the curtain only to find a hand washing sink. So you tell me, hi-tech recovery software or the hands of angels. I'm betting that what I had was the hands of angels encamped there by your prayers of protection urging me on to quick recovery.
I grew up with a mother who loved to say "This is the day that the Lord hath made. Let us rejoice and be glad in it." Walking outside in this glorious St. Louis springtime weather makes this scripture resonate out of your body. It is so amazing and so fresh that you cannot describe all the nuances of it. But we can tell you that we are loving it.
Everyone should take a vacation to St. Louis in the Spring. We did. Smile.
Wednesday, April 13, 2011
Yesterday St. Louis Marathon coordinator, Mona (Vespa) Langenberg, made a special presentation to Mike of an Official St. Louis Marathon t-shirt with the encouragement "you have earned it!" Sunday, April 10th was the date of the St. Louis Marathon but was also a "marathon" day for Mike with his progress. Mona also reminded us that Barnes Hospital was actually in the middle of the marathon route. This is a big deal and a huge "status symbol" because you can't get one of these Brooks brand running shirts unless you ran the marathon. Mike put it on for his doctor's visit and Nurse Nicole in Dr. H's office asked "Who ran in the marathon that gave you the shirt?" (She knew only the runners got them because Nurse Jennifer ran the half-marathon.) She smiled at his "I did" response because she knew it was true. Running two miles for you or me is comparable to eating 1/2 cup of food for Mike. Really. Hannah just called to check on Mike and he told her that "he was working out while he was watching a movie" ... "Yeah, I'm drinking tea while I'm watching The Rock." No one deserves the coveted shirt more.
Yesterday after we got out of the hospital and before we left for our doctor's appointment, I knew I had to let Southwest Airlines know that we would not be returning on our scheduled Tuesday afternoon flight. To my surprise, when I selected the "change a flight" button, a notice came up on the screen. It said that "because of circumstances beyond their control, there might be disruptions to your flight schedule so they are offering the opportunity to change our flight day and time at no add'l cost." Wow! I sat there stunned. In other words, we got to change our flight to Friday, April 15th with no change fee and no add'l flight cost increase! More specifically, we got charged $0 for the $315 cost.
There is another cool part. I called a Southwest agent after I completed the online flight change to make sure that I did it correctly. The agent said that the message I saw was actually a computer glitch from something they offered last week, but since we got it they were going to honor it. Not only that, she checked to make sure we got the whole credit. Like a said... a God thing.
We will be returning on Friday, April 15th arriving in Omaha at 3:55pm on Southwest 1083, Lord willing.
On one of her checking-in calls last week Abby said "Is Mike losing weight in the hospital?" My reply was "Well, maybe a little... you would think so but I'm not sure." When you visit Dr. Haughey's office the first thing you do is weigh in. He weighed in two weeks ago on our pre-op visit and he weighed in yesterday. So we got the weight loss figures. I have to say that we were both surprised that he has lost 16 pounds! He started at 187 and weighed 171 yesterday. I told Mike that his full time job, and my full time job, for the next two weeks is nutrition & caloric food intake. When they told us that Mike would have to learn to swallow again before we could get out of the hospital we thought "yeah, yeah, learn to swallow again... how big a deal could it be?" It's a big deal. Unless you can see how hard he works and how hard he concentrates mentally and physically to get a half cup of yogurt or broth or ice cream down, you can't understand it. (In fact, probably only lifelong friend Gary Oliver and brother-in-law Curt Ray "get it".) With my interest in nutrition and cooking, it is an exciting challenge to find protein-rich foods that interest him and more importantly, have the right texture. Last night he had Tom's cream of cauliflower soup and tonight Tom is whipping up cream of avocado soup. This morning we were excited that he successfully consumed some soy yogurt and two scrambled eggs that were softly cooked with butter and 1/2 & 1/2 then mashed with more butter. Bingo. He can get hot tea down if it has the soothing properties of honey added to it, otherwise it gets coughed back out. These post-surgery conditions will subside in about 2 weeks. If I talk to Mike while he is eating, he says "not now I'm working". I am super proud of his Marathon efforts!
Tuesday, April 12, 2011
What a day! I am flooded with good stuff to share and a bit overwhelmed by how to even start. Note to self: Take one thing at a time and do it in pieces. It was thrilling to get out of the hospital and exhilarating to wash the "hospital cooties" off after a 7 day hospital stay. Mike put on "real" clothes for our 1pm appointment with Dr. Bruce Haughey. Within seconds after warmly greeting us Dr. Haughey said "Let's jump to the pathology report." We learned that THE CANCER WAS SUCCESSFULLY CLEARED FROM THE PRIMARY SITE -MARGINS WERE ALL CLEAR - THERE WERE NO UNFAVORABLE FEATURES - and there were 4 NODES WHICH IS WHAT THEY USUALLY FIND WITH THIS KIND OF CANCER. We learned that that "lower lymph node" was not back in level 5 like we thought and was actually in level 3 with the others and was p16 positive like the rest. (Just trust me, this is good news.) The bottom line: This is all the news we needed to support our decision to NOT have additional radiation or chemotherapy, and we are celebrating that WE ARE BASICALLY DONE WITH OUR TREATMENT! We will follow-up with Dr. Haughey every 2-3 months for 2 years to keep a close watch on things. We came to Dr. Haughey in the first place because he thinks outside the radiation box. Today he shared that most cancer institutions would recommend add'l radiation and chemotherapy for 4 lymph nodes and capsular spread, but Dr. Haughey believes that the data that supports this is outdated. Dr. Haughey has new findings - hot off the press - that will be announced in Chicago in two weeks. He said "People would say that I am going out on a limb but I have to be honest with the data." Bruce believes (as do we) that when the cancer can be successfully cleared from the primary site and there are no p16 negative cells, that radiation & chemotherapy can be more detrimental than healthy. Bruce said "Your desire for NO RADIATION OR CHEMOTHERAPY is not an unreasonable approach." He said this because 1.) he is very happy about how the neck dissection went, 2.) there were no aggressive features at the primary site, and like we said 3.) the cancer was very successfully cleared from the primary site with WIDELY CLEAR MARGINS. Our plan: Make our appointment with Dr. Haughey in two months and be about the business of leading a healthy, happy life. Hallelujah.
Before we leave the hospital I just wanted to say thank you to everybody who has ever visited this blog and journeyed on MikesLongRide with us. I just saw (on the counter at the bottom of the blog) that we have had over 4000 hits since we started this counter several weeks into our journey. During all of these long, hard days here in the hospital I never felt alone. This little blog helped me feel your presence, your love and your prayers in tangible and intangible ways. Amazing Grace.
Both of us actually being asleep when the first doc came in this morning was kind of fun. And when the whole team came in, Mike was sitting at the desk reading comments on the blog and I was in bed! Dr. Rich said "Now that is what I like to see." Mike is currently drinking some warm green tea with honey. Mike wants to report that he is up to having two swallows of tea in his mouth at once, and is working toward three without choking. AND DR. HAUGHEY JUST POPPED IN! It is so comforting to see him and hear every wise and kind word that comes out of his mouth. (It is hard not to get emotional every time we see him as we are so appreciative...) Mike already had his neck drain taken out this morning, and Dr. Haughey said he would take out his neck staples during our 1pm appointment at his office this afternoon. Our plan is to leave the hospital as soon as the discharge papers go through. Then it is off to the Vespas to shower & bath and put on real clothes! I am most worried about getting me cleaned up today as I didn't make it back to our Vespa home to shower at all yesterday because I didn't want to miss the doctors. I haven't washed by face or hair or anything since I got ready for bed on Sunday night - ha. (I have been brushing my teeth and my new shorter haircut is totally working in my favor.) It hasn't seemed important, but I am jazzed to freshen up today. In a few minutes I will call Southwest Airlines and tell them that we will not be on our flight today. Dr. Haughey will help us know when it will be safe for Mike to fly home. When we first scheduled the flights we were planning three days post hospital for Mike to build his strength, but we will depend on Dr. Haughey's wisdom for that. And they just came in to say we can officially leave!
It is 8:45am on Tuesday morning. Exactly when then wheeled Mike into the surgery one week ago today and Dr. Haughey stayed back to pray with me. Now I am writing to say that at 7am this morning they submitted the hospital discharge papers for Michael J. Blanc. Hurrah! I am also writing to say that we slept last night! Note: It is better to not have any expectations about sleeping in a hospital suite. That way when you sleep at all it feels like a marvelous treat.
Monday, April 11, 2011
When the journey got bumpy and scary, I comforted myself by remembering how God marked our path for us... how I was in St. Louis on business (staying at the Vespas) when the Mayfields reminded me that otolarygology was Dr. Haughey's specialty... how Bruce said 'yes I can help you'... how Tom & Janice Vespa offered us their 3rd floor as our home whenever we needed it. It was comforting to see the path clearly lit.
Staying with the Vespas is an amazing blessing. I could NEVER begin to list all the comforting things they have done to make all of this more tolerable, but I am going to list a few of them so you can get the picture:
-They shuttle me to the hospital and shuttle me home.
-Tom has a glass of wine for me every night when I stop by to wash my face and grab jammies.
-There are fresh hyacinth from Tom's garden on the night stand.
-They send me off with a lunch / snack bag when I leave for the hospital.
-I got to watch Papa (Grandpa Tom) lovingly care for Cece the week before the Marathon. (Do you know how peace-giving it is to watch a grandpa delight in caring for a first grandchild? These two are in love!)
-Tom & Cece walked me to the Metro Link station (above) to show me the ropes of taking the train to the hospital, even though they always insist on driving me.
-They live just two miles from the hospital complex through beautiful neighborhoods to get there.
-Janice was an RN in a former life and her medical counsel blends in common sense & love.
-(Whenever we get back) they have a porch where Mike can sit in the sun and look out at Tom's Garden
-Tom is a gourmet cook, and Janice is a gourmet baker.
-Like I posted about before, Tom fixed an amazing pre-surgery dinner for Mike including homemade linguine noodles
-They have been dear friends of our family for years and years, and even came up to Oakland for our wedding.
-And they make all these things seem like all of it works right into their schedules.
Thought I would share some insights into why we would rather not stay at the hospital again tonight. While we LOVE our excellent doctors and have received mostly good nursing care, hospitals have their down sides. Last night went like this: As it takes a while to wind down and get comfortable, about 1am we were starting to settle into the deep & good kind of sleep. At 2am a nurse entered the room and said that Mike's blood pressure was up and the doctor ordered some blood pressure medicine. (A while before Mike had told me he had a crazy dream. After the nurse gave the medicine I asked if it was a scary dream and Mike said it was very wacky AND very scary. Bingo on the blood pressure.) Then she said she would be back at 4am to check his blood pressure again. Ugh. That is like trying to sleep knowing your phone is going to ring! I tried not to wig out remembering that the night before we got our best sleep from 4am to 8am. Well, she didn't make it back until 4:20, and because she left the IV machine unhooked and beeping, she wasn't completely out of the room until 5:30am. The first resident came through about 6am. A team of residents followed at 6:30am. Our breakfast tray full of food we never use followed at 7am, and shortly after that a respiratory tech showed up to check the oxygen in our room which we do not use. By 8am we were too exasperated to sleep. Add to the above scenario about 5 pee breaks and you have a good picture of our night! Mike's progressive progress was not based on sleep. It is kind of therapeutic to laugh about it now, so thank you for indulging me while Mike is taking a nap!
This is the answer to every question you have asked - and every question you are thinking about asking. This includes 1.) When are you flying home? 2.) Does Dr. Haughey have the pathology report back? and 3.) What is your next step? All we do know is that we want our next step to be sleeping in the 3rd floor bedroom at the Vespa's home instead of the hospital.
From about noon on today, Mike has been making progress by the hour. I believe we have hit the turning point. Besides having his first shave and getting his IV out, he put on his first non-hospital shirt, watched his first DVD and for the first time when I ask him to eat something he doesn't look like I just asked him to rerun the marathon. We are thankful!
I am proud to announce that Mike ate almost 2 cups of Japanese soba broth. He not only ate it but repeated "this is so comforting" while he ate it. This is the turn around day. Mike is making rapid improvements today and we are actually lobbying to leave the hospital. His missing link is sleep, and we are not getting that here. In the photo he "pretends" to eat the soba noodles. Silly boy. (If I had a blender he could.)
Sandy Pearson sent me this email on Saturday evening: "I try to read your blog to the kids regularly so they know what is going on. Just now Mason said 'Mike needs jello cuz it is good and he can be alive.' Kind of a 5 year old way of saying - just muscle through." Love it. Please tell Mason that I believe his sweet words really encouraged Mike because that is the night that Mike practiced swallowing his saliva all night so that he could get his first real spoonful down the next morning. I have trouble keeping up with emails right now so I am delighted we got this one. Everyone's encouragement seems to come just like an IV drip bringing strength and comfort.
Sunday, April 10, 2011
We have made miles and miles of progress today. Mike's head is clearing from the drugs and he has not needed any pain killers. He is able to rest and nap (which he is doing right now.) His physical strength & stamina have amazed me all along and today we made numerous trips around the nurses' station and two trips off the 6th floor, down the elevator and outside. The thing that wears him out most is eating & swallowing, and he is doing great. He had over 20 bites of custard and managed to get some Ensure nutrition drink down the gullet. All in all he scored all of his 26 marathon points! Three cheers for Mike!
A nurse just came in and asked "Are you the ones that brought those amazing cupcakes and delicious snicker doodles yesterday?" Answer: "Well, our friends brought them in for Mike to give to you."
Vicki Hastings brought a box of exquisitely decorated cupcakes from The Creative Cupcake, and Sharon Mayfield brought a big plate of snicker doodle cookies for the nurses' station. (Of course, I took some first!) Talk about a great way to get some extra special nursing care! Sharon handed me in a huge tray of brownies earlier in the week and told me to "give these to the nurses and tell them they are from Mike." The ICU workers went crazy.
Today's nurse said that the staff didn't get to take breaks for lunch yesterday because they were so busy, so she said not only were the cupcakes beautiful, but were comfort food as well.
And John and Cathy Hamer were sweet to make the Ted Drewes and Greek yogurt run for me when we were trying to find something to "go down smoothly" for Mike.
And I can't keep track of the number of people that have said that they would do anything we needed. THANK YOU ALL.
Our "suite" came with our own bathroom (a real treat after almost 5 days in the ICU) and a shower with a seat & detachable shower nozzle. So guess who got a mini-spa day? Again, the nurses let me do the whole thing. We massaged and scrubbed and sprayed with warm water. Mike only has one IV tube now so we put that hand in a big baggie and I just had to be careful around his sexy scar and his neck drain. Mission accomplished. They have these way-cool shower caps that have the shampoo right in them. They heat it before I put it on his head and it sets on his head like a shower cap only you can massage the head and clean the hair - and you don't have to rinse this soap. Can't believe they aren't marketing these things! Perfect for over-sleeping. Just put one on en route to work or the airport. Smile.
Today, April 10th, is the St. Louis Marathon. 20,000 runners and 1500 volunteers. We really feel a part of the excitement of the race because believe it or not, Tom & Janice Vespa's daughter Mona is the marathon coordinator! Her job is running the St. Louis Marathon (not running in it.) It has been exciting to have this close connection to the big event.
But it has also been exciting because we are having our own St. Louis Marathon right here in Room 6236. 26 full bites of soft food (ie Ted Drewes Custard) and at least 26 laps around the hospital corridors.
And we are off to a great start! Mike has already made about 5 rounds out to the nurses station and elevator - and the exciting part - drum roll please - he successful gotten down at least 6 spoonfuls of custard! I am elated. He wanted to try a bite first thing this morning and he worked it down - no violet gagging or coughing. I said "Sweetie, did you really get that down?" and he said "Yeah, I practiced swallowing saliva all night." I cried I was so proud. We are off to a great start in the 6236 Marathon.
It is a beautiful, sunny day in St. Louis. Mike got more sleep last night than the night before. He was still having trouble relaxing & sleeping and the night nurse finally said "I don't care how you do it, but you have to figure out how to get some sleep. I don't care if you sleep upside down or on the floor but you body needs sleep." So I rolled Mike over on his side (off of his incredibly sore back) and crawled into bed with him... and he slept. Not uninterrupted mind you, but we'll take it. There were urinal breaks to take and IV cords to unkink. (Need an IV line un-occluded and the machine reset?) I'm your girl. We "slept in" until 8am. (Good thing because I think our soundest sleep was between 4am and 7am.)
Saturday, April 9, 2011
I am proud to report that Mike made four trips walking to the nurses' station and back! Even standing up was hard this morning, so we are making progress. It would feel even bigger if he didn't feel so rotten. We are excited for all the drugs to move out of his system. He hasn't taken any pain medication since 5:40pm yesterday. We are hearing other stories about morphine's nasty side effects. (Thank you Nile & Leigh.) He was also able to get about 2 t. of frozen custard down - which is at least something! Hopefully more progress there tomorrow.
Around 7pm tonight we were escorted to our own room at Barnes-Jewish Hospital in the Washington University Medical Center complex. Our twin-twin room with fold-out recliner in 6236 is QUIET and lacks the clanging, beeping & white lights of Mike's previous abode. We are hoping Mike can sleep tonight. And I get to stay in the room too. He finds it very comforting right now to have me in close proximity. (Well, I think he always does... but more so right now.)
The previous post looks a little cheery for the actual scene. Mike is absolutely miserable today and I feel badly now that I complained about his ability to eat. (I asked him to smile for the picture with Dr. Rich.) Dr. Haughey just stopped by and when he looked at Mike and heard him speak, he knew immediately that Mike has too many remnants of morphine still in his body. Note to self: No more morphine as pain killer for Mike. The side effects have made him miserable and unable to get rest, even though he is exhausted. PRAYER REQUEST: Please pray that all of the sedative and morphine pain killer would clear his system. We both feel better after seeing Dr. Haughey because it helps us understand why my strong husband can't even stand up and continues to feel just plain weird.
Don't tell Mike I said this but it is easier to feed a baby who doesn't want to eat. He is trying on jello and resisting the grits and oatmeal I found at the cafeteria. They want him on soft solids - no ice cream (too cold - bummer - frozen custard would make this easier!) and no liquids yet. He has to develop the swallowing skill set first. Not only is the swallowing hard but it is also scary for Mike because of the drowning sensation. It helped when the nurse told him to MUSCLE THROUGH IT.
Now that is language he can understand.
Then Dr. Rich, Dr. Haughey's chief resident, came by to set a good example for Mike with his dish of soft yogurt.
By 8am Mike had his catheter out (he did not like that) and he was sitting up in a chair. He feels crappy (I used the nice word.) When I arrived just after 7am he told me that he was awake every hour during the night. I got to give him a bath and washed his hair at 9am. No fun and games today. He did smile once when Tom Vespa texted him from the starting line of the St. Louis Marathon weekend 5k and told him he didn't get to sit it out next year. (More on the St. Louis Marathon later.) None of my jokes are funny, and no kind of touching or massaging feels good. He is getting better incrementally. He just can't see it himself yet. Expect lots of texting today because it is something for me to do while I am sitting quietly next to him... and I have lots to say. smile.
Friday, April 8, 2011
Today was a rich day. Today was an exhausting day. It was almost too deep to reflect on when I am this tired, but here it is a nutshell --- It was thrilling to have Mike back. It was hard to see him in discomfort and scared. It was the sweetest thing in the world to hear him talk to his mom and all the girls... and me. It was the best to hear his sense of humor in tact from the moment he woke up. He came off the sedation slower than we expected. The nurses suggested morphine to keep him comfortable during the day. By the end of the day I asked them to use something else if he needed pain medication. I asked Janice Vespa (former RN and now VP of a multi-state hospital complex) to look up the possible side effects of morphine: agitation, anxiety, fear, mood swings, sleeplessness, drowsiness. This describes Mike today. It was unsettling for me because none of the above characterize Mike. If there are any blue-bracelet wearers (figuratively and literally) out there tonight who want to know how to pray for him, please pray for a natural, peaceful night's sleep. He is exhausted.
I was tickled that Nurse Jan let me help bath Mike and get his bed linens changed etc. Since they have wanted Mike to be perfectly still, they did not move him for cleanup stuff until today. "All clean, no bugs either" my mom used to say when she bathed us as little girls. Mike has been able to talk to all the girls except Emily - Kiley, Mallory, Susanne, Mollie, Evian, Abby, Hannah - and we'll catch Emily after school. When he hears their voices he tears up and his face contorts with emotion... then he composes himself and cracks some kind of joke. (I need to be making a list!) He also got to say hi to both moms. Don't get the idea that he is ready to take phone calls yet - ha. It really wears him out, but he wants to make the connection - and so do they! The pain medicine does make him a little scared, sweet thing. He fears that he will start bleeding again - that scary part that was 3 days ago - but to him it was just hours ago since he was out for 2 days. He is able to relax more and more, but also wake up more and more - which totally makes sense. Lots of medications winding out of his body... He keeps asking when he is going to feel more awake. The nurses said that tonight he will feel better, and tomorrow he will feel more "normal". Thanks for praying for his comfort and continued healing.
I told Mike I was going to ask all of our support system to pray for Mike's comfort today. Also that he can safely clear the very nagging drainage. He tries to rest but can feel like he is drowning. They can't stick the suction tube back into his mouth and he is trying not to cough too hard so this stuff is frustratingly hard to move.
We just waved good-bye to the actual ventilator machine in the room as it rolled out. Mike is asking when he will "wake up" since he is so groggy. Nurse Jan said that by afternoon the drugs will be out of his system enough to feel more normal and "awake". He is holding his suction tube and faithfully using it to suck out drainage that has accumulated. He just called it his "opium pipe". hee. That's my boy. I am getting a kick out of how cute the nurses think he is. "You are even cuter awake" kind of comments.
Glorious news. Mike is off the breathing tube and "awake". He is still a little groggy but he has cried a few tears and cracked a few funnies. You can't imagine how good it felt to laugh with him over some funny comment. (Ask me about it later!) He is in an almost sitting position and using a suction tube (on a long straw-like thing) to remove gunky-spit stuff from his mouth. I can tell he feels miserable and sore. This will be a hard day for him, but hard day is relative. I am always proud of his fighting spirit. I am always delighted by his sense of humor. More later!
Thursday, April 7, 2011
Watching a loved one in a sedated state does not get easier by the hour. You work hard to remember that this is in the patient's best interest, but it is still hard. Every time a machine or monitor beeps every cell in your body jumps. Even when you go to the bathroom or dash to the cafeteria to get a tea, you feel pulled in two directions. Tomorrow (Friday) is a big day. I am eager to have my talking husband back. I am eager to tell him about all the support we have had, and how many people love him and are praying for him. I am eager to see his face when he finds out it is Friday, instead of just after midnight on Tuesday night (Wednesday morning) when the breathing tube went in. Also, I am eager to see how well he is going to pull off his new kick-ass neck scar. He earned this battle scar and will wear it well. Off to bed...
All of the kids adore Mike. In fact, that sounds like an understatement. It has been so sweet to see how their intense love has poured out in different ways over this cancer journey. It has been encouraging to hear through texts and phone calls how God is helping them when they feel scared... We are thankful that Evian (and Baby Bella) came up to stay with Mallory, Susanne & Mollie the first few days, and now they are staying with Mike's Mom, Grandma Dee. The girls have told us that the whole town has been taking care of them as well! I asked Evian to send a photo from her phone from this week.
Here is a picture of what love looks like. This is a picture of the support we feel. The Henson Family in Virginia has been praying for Mike every day. We first met Jennifer & David Henson on a Creative Memories incentive trip to St. Johns, also spend time with them in Ireland, and we met all their sweet kiddos on the Disney trip (all CM trips). We just wanted to say to all of you out there... thank you for your support!
You probably want to hear more than about Mike blowing kisses at me. (But it is the dearest thing when he does it so it is hard not to talk about it.) It was also precious because I happened to be standing by Mike's bed when I called his mom to update her (because she doesn't have a computer to read news on the blog.) I put my phone on speaker and told her to talk to him. When he heard his mom's voice a big tear ran down his cheek... then another. On the medical side, Mike had the packing removed early this morning. It went well and the resident doctor looked at his throat with a scope and saw that there is no evidence of bleeding. This is good news! The plan is to keep Mike lightly sedated today, and tomorrow they plan to remove the breathing tube and the sedatives. They feel that keeping Mike totally still will allow the delicate surgery area to heal to prevent further bleeding. His nurse today said that all of Mike's vitals continue to look good, his lungs seem clear and the blood loss did not affect him.
I am back at the hospital next to Mike's ICU bed. And he is not as heavily sedated today so I can see him move his eyes! (Very different than yesterday.) He heard me when I came in and opened his eyes half way. I told him how many people loved him and were praying for him... told him how brave he was and how well he is healing... and I told him he looked handsome. And then he moved his lips around his breathing tube and kissed (toward) me! No mistaking it. I say it in his eyes too. It took a lot of energy for him but I'll never forget it.
Wednesday, April 6, 2011
Wow... I just took the time to read all the comments so many of you have written under the blog posts. Thank you. They all sunk deep into my heart where they were really needed. Now I know I can sleep tonight! I cannot wait for Mike to read each one.
A big blessing has been encouraging words that have come from the lips of our kids. To share just a couple, today Evian sent me this text: The Lord Himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged." Deut. 31:7-9 Abby shared this Amy Grant song that she listened to during a run thinking about Mike: http://www.youtube.com/watch?v=zOHJghBU0XA&feature=related God loves a lullaby In a mother's tears in the dead of night - Better than a Hallelujah . Sometimes God loves the drunkard's cry, The soldier's plea not to let him die -Better than a Hallelujah. Sometimes we pour out our miseries, God just hears a melody - Beautiful, the mess we are. The honest cries of breaking hearts Are better than a Hallelujah. The woman holding on for life,The dying man giving up the fight Are better than a Hallelujah sometimes. The tears of shame for what's been done, The silence when the words won't come - Are better than a Hallelujah sometimes. We pour out our miseries, God just hears a melody - Beautiful, the mess we are. The honest cries of breaking hearts Are better than a Hallelujah... Better than a church bell ringing... Better than a choir singing out, singing out... We pour out our miseries, God just hears a melody - Beautiful, the mess we are. The honest cries of breaking hearts Are better than a Hallelujah... We pour out our miseries, God just hears a melody -Beautiful, the mess we are. The honest cries of breaking hearts Are better than a Hallelujah...(Better than a Hallelujah sometimes)Better than a Hallelujah(Better than a Hallelujah sometimes)
Before I fall into bed tonight I want to tell you how much better I felt after seeing Mike today. He is fully sedated and looks very peaceful. (I think that the sedation and pain relief drugs seem perfectly coordinated.) Their goal is to keep him perfectly still so that his body can heal and tender areas of incision won't be moved. No more coughing! He looked comfortable. When I am there I gently lay my hand on his and talk softly to him. They are not moving him for anything. I can honestly say that he has not moved 1/4 inch all day. It makes me relieved. I think I can sleep tonight knowing he is so comfortable. Tomorrow morning (Thursday) they will remove the packing to see if the bleeding has stopped like they think it has. They plan to leave him sedated on the ventilator until Friday morning. I keep thinking about how fun it will be to look in his eyes and talk to him.
I just got a text from Mike's sister that said "if you are awake, we are ready for an update." It was just the boost I needed because while Mike is stable and healing, I feel weak on many levels and could have stayed crying in bed in a rumpled bathrobe. Last night was hard. Knowing Mike will be on the breathing tube for a couple days is hard... and I miss him. You might have thought "wow... that Karen has really been a tower of strength"... not right now. But I can tell that I am about ready to stand back up again, Lord willing. First, thank you for reading this. It really blesses us, And it helps me collect my thoughts. I NEED IT to focus on the doctor's sound and encouraging words. I talked with Dr. Haughey again around 1pm. "He's fine. His vitals are spot on." Like I said, last night at about 1:45am they put a breathing tube in to help stop the bleeding of Mike's tonsil area (where he had his cancer mass removed yesterday). They do this so that they can pack the tonsil area around the breathing tube to put the needed pressure on the wound. When it is venous bleeding like this, it needs pressure on the area. Dr. Haughey reminded me that I need to remember that this is not the usual reason for being on a ventilator. Mike can breathe on his own, but they don't want him too so that they can keep his breathing controlled and they need him to be sedated or he would not be able to tolerate the tube or the packing. It was good to hear that there is no active bleeding since the packing / pressure was put on. I have been reminded that it is not uncommon for people to have breathing tubes in for a few days for these delicate kinds of throat surgery. In fact, we kind of thought that Mike would come out of surgery with a breathing tube in (but didn't because he bled very little during surgery.) Another thing that Dr. Haughey said was that this is "just a hiccup - and will not affect any of the final outcome or anything he did yesterday". Good to know. Dr. Haughey's plan is to ease the packing out tomorrow morning (Thursday) and take the breathing tube out on Friday. I am also playing Janice's words through my mind and I will share them with you: The main goal of the surgery was accomplished. This is a hiccup in the recovery. Mike is a healthy guy, and this is the best way for the healing to start. He is on the path to recovery. Please pray for rapid healing and comfort for Mike. Please pray that I will know how to care for him and comfort him in this situation. And pray that he feels the Lord's presence and your presence through your prayers. I hate not having Mike here to be with and communicate with... but I have to remember that we have a chance to communicate on another level the next couple days. I want to do this well and I don't know how. Lord, help me.
It is 5am and I am leaving the hospital to get some sleep. I do think that last night was the worst night of my life... at least what I can remember right now. Mike will be fine but he came back from the OR just before midnight and within 20 minutes, the bleeding from the tonsil area was back... this time with a vengeance. I will spare you details but sweet Mike's cough brought with it much bleeding. By about 1:45am they put a breathing tube in so they could control the bleeding. Even though he was technically "resting" I could not bring myself to leave his side... I'll just say it was more pain than I hope to experience in a long while to watch someone I love so dearly hurting so much. I am taking time to write this (hope it makes sense) because I want you to pray for Mike's comfort and rest today. He is the bravest man I know.
Tuesday, April 5, 2011
At 10:45pm I got a call from Dr. Haughey from the OR: "He is fine. Nothing was actively bleeding when we got in there. All of my stitches were in place." (Your prayers?) Dr. Haughey said that Mike had very little blood loss during the surgery and he had noticed how very dry his mouth was when he spoke with Mike earlier this evening. He could tell that his voice was not normal and suspects that there was a clot sitting back there from his time in the recovery room. The bleeding has stopped and Dr. Haughey put a "clotting seal" over the area. As soon as he recovers from the anesthesia, he will be back up to the room. I will be praying for a restful night for my sweetheart. Today was a long ride for him. Again, thank you for cheering and praying.
It is almost 10pm and Mike had to go back to the OR. He coughed about 8:45pm and there was blood coming from his tonsils. It is a very vascular area and I guess one of the arteries started bleeding. Poor Mike. He is exhausted and wants to sleep and I can't imagine how awful it is to have all that blood in your mouth. We are very thankful that Dr. Haughey came back over to the hospital instead of leaving it to one of the residents. Please pray. I guess they can cauterize it rather easily but this is very scary. Please, please pray for this.
I just got to see Mike again. For another 5 minutes. It is very good to see him looking so normal - except for the scar and the drain tube and the fact that he feels horrible. I have to laugh because I said I was surprised his neck incision was only 3 inches long. Well, that was all I could see standing on his right side. This time I saw how the almost 8 inch incision goes on up the side of his neck. It still looks good, and like Sharon says "scars can be sexy". He will wear it well! I did not mention the possibility of the "hybrid tumor" to worry anyone, but rather because 1.) it helps us appreciate how thorough and intuitive Dr. Haughey is and 2.) if people are praying, they can be praying for the pathologist and this issue. This will just affect what we do next.
They let me go up to his bedside in recovery for 5 minutes. He is definitely miserable and in a lot of pain but he looked good! And he could talk to me - more like groan to me, but I could easily understand him. I was expecting a lot of swelling in the face and neck but he didn't have any yet. I expected that his whole head would be wrapped in bandages but there were none. There was no breathing tube - yeah. He has about a 3 inch incision on his neck that is stapled and looked good. Please pray for his comfort. I have never heard Mike complain about any pain... he was complaining about how rotten he feels. But he is very coherent and looks good!
I just finished talking to Dr. Haughey after Mike's surgery. (It is about 3pm.) He said that EVERYTHING WENT VERY WELL. I want to start by saying that he also said that he was very aware of the many prayers in the operating room and during the surgery. He said he is very conscious of that. He said that one of the reasons that it took longer was that there was more tumor (cancer) at the primary site than we could see. He said that the initial photo (which is what was biopsied) was only about 10% of the mass, but he removed it all. Dr. Haughey explained that there are two parts to the tonsil, and Mike had both parts on the left side removed today because that is where his cancer was growing. The palatine tonsil is what many people have removed as kids, and Mike had the lingual part removed today as well. Dr. Haughey also removed a small part of the base of tongue on the left side that was affected. I was happy to hear him say that there will be no deficiencies from today's surgery after recovery. He said that Mike will have a VERY sore throat and will start on a soft diet tomorrow. Dr. Haughey said that he removed the lymph nodes where the cancer had spread and that was routine. Like we said before, it took longer because one of the affected nodes was much lower than the rest. The pathologist and Dr. Haughey will be conversing because this "farther south" lymph node has Bruce's attention. He is wondering if Mike might have a hybrid tumor (meaning that it might have components of p16 negative as well as p16 positive.) We will know more when he knows more concerning this part. And in a few minutes I get to go visit Mike in recovery for about 15 minutes! (Just so you know, my cell phone does not work in the Surgery Recovery Room so I have to step out in the hall to get or make texts & calls. )
At 11:45am I was just told that "the patient's vitals are good and they just started on the neck dissection part of the surgery". This is good news and appears to me that they are right on schedule. They were removing the primary mass first (tonsil area) using the Steiner Scope and then it took some time to change equipment before they started on the lymph node neck dissection. Dr. Haughey will make an incision on the left side of Mike's neck and carefully remove the affected lymph nodes. This is very time-consuming as Dr. Haughey is working around nerves and arteries. I was thinking it was time to hear something! They give you a little buzzing pager and it is so stressful when it starts vibrating & flashing, even though you know it brings updates of your loved one. For a bit of trivia to ease the surgery stress, Dr. Haughey does Whitney Houston's tonsil work and the President of Pakistan has flown in for Bruce to work on him.
Mike and I are overcome with the grace extended around us. We have enjoyed the sweetest phone calls, emails, blog comments and texts... and each one has landed at the perfect time to calm and encourage... thank you for your love and prayers...
Since we landed in St. Louis we have been pampered and cared for beyond belief... We are staying with long-time friends, Tom & Janice Vespa. (Since they have made numerous visits up to Oakland to visit, all of the kids know & adore them which makes it more comforting for the children. They all understand what loving care we are getting!)
Eating is certain to be uncomfortable for Mike for several days after his surgery but be assured that Mike's "last supper" was an amazing one! Tom lovingly made Mike fresh linguine pasta noodles using his Italian aunt's recipe because "that is what his mom would have done for him" when he needed comfort. When we arrived, the pasta noodles were drying on a tea towel and the aromas in the house were intoxicating. Tom made "wedding meatballs" made with fresh meat that he ground twice that gives a texture as soft as mousse. He also made a special tomato sauce from the region of Italy where his family is from - and to top it all off, we had a bottle of wine from that same region. Loving care. The meal was amazing. Mike had 3 servings.
The Vespa's home has a 3rd floor that they are considering our home for the next week. I cannot express how comforting it is to be with them. They are amazing friends. They are amazing caregivers. Because of Janice's extensive medical background, she also knows how to say "just the right thing" to encourage. When we headed out the door at 5:15am this morning she simply said "this starts the journey to healing". Those words have been a balm today. For years Janice has modeled being an advocate for aging parents in the hospital, and last night she coached me again about "being attentive, not being afraid to question & following your gut" with a loved one during a hospital stay. She printed out of check list for me to take notes on during each day in the hospital. Loving care.
Did we mention that the Vespas live just a couple miles from the hospital complex? I could actually walk from the hospital on Kingshighway to Skinker through Forest Park to get "home" if I wanted a two mile walk - which I might do later in the week.
We feel this same kind of love flowing in from friends far near & far... it is an amazing kind of journey to be on.
Dr. Haughey had so much care in his eyes this morning... and his confidence & excitement over his work are very comfort giving. It is hard not to tear up when I think about the path that brought us to Dr. Haughey's care.
While Mike is in surgery, in the capable hands of Dr. Bruce Haughey, I thought I would busy myself in the Surgery Waiting Room by blogging to you!
Mike got up early yesterday morning to bake some bread before our flight to St. Louis. Tom Vespa picked us up at the airport and then we headed to the Siteman Cancer Center at Barnes Jewish Hospital to make a bread delivery to Dr. Haughey and his kind & caring nurses. We feel very indebted to these people who have scheduled our appointments and made it possible for us to be here - the least we can do is bring them some fresh whole wheat bread.
Mike is in the operating room with Dr. Haughey, Dr. Gaines (the fellow), Dr. Davis (the anesthesiologist) and Denise (the nurse anaesthetist). I will keep you posted as I hear things... The surgery started at 8:45am is scheduled to last until 2pm, and they said not to be alarmed if they were not finished by 4pm. It was comforting and precious to me that Dr. Haughey stayed and prayed for Mike with me before he left for the surgery room. He also went and got a nurse to escort me to the surgery waiting area. I cannot express how caring that felt...
Saturday, April 2, 2011
Sweet friends Leigh & Nile Ernst in California sent us two Lance Armstrong "Live Strong" bracelets to wear during Mike's cancer journey. Leigh & Nile have been a source of wisdom and inspiration to us with Nile's cancer fight. When we tried to order more wrist bands for the kids we realized we could personalize them and this is the result!
P.S. Like the print in the background? It is part of Abby's new collection at Target. (Bella just got these "Abby" shorts for her birthday.)
We hope you enjoy "meeting" Dr. Haughey in the YouTube video below.