Adjusting to Life Without Ben

So I thought long and hard about whether or not I should do a final blog and I guess I owe this much to B. B was such an integral part of all our lives. It seems surreal that he is no longer here. I am officially back home to our place in Grand Rapids. The house seems so different now. As the deacon said at B's funeral, there seems to be a veil that covers everything in life. Colors seem faded, jokes less funny, and my heart seems hallow. His essence surrounds me. His shoes still fill the front entrance way, I am still washing his dirty laundry, and our dog still stares out the front window watching for B to pull in the driveway. It almost seems like he is away at a conference or on a vacation, but the truth of the matter is he isn't coming home.

I find it very difficult to breathe and have being pouring through pictures of us from the past 6 years. One thing I must say is B is/was very very handsome. Damn I landed me one hunk! For those of you who weren't able to make it in to see B on his way I decided to include a copy of the eulogy from one of B's closest friends as well as a link to a blog written by B's longest friend in the world. I guess this is the best way I could pay honor to my best friend, my soul mate, my marido, my bff, my homeboy, my husband. Thanks again for loving both B and I and for supporting us on this tortuous journey. Find the touching story of Tony and B at http://www.startswithanx.com/ and a copy of John's eulogy below.

EULOGY FOR BEN

Hello, my name is John Lipford. Ben was one of my dearest friends. I would like to share the following words with you as we gather to celebrate his life. First, I would like to extend my most sincere sympathy to Lindsay (Ben’s wife) and Dianne (Ben’s mother); the women who molded Ben into a man of true character and stood steadfast beside him until he was carried to the shelter of the Lord.

I offer my most heartfelt condolences to Lindsay’s parents, Nancy and Don Homrich, who provided constant care and support during Ben’s time of need, as if he was their own son. I express my deepest empathy for Ben and Lindsay’s immediate family members and closest friends, who witnessed and nurtured Ben and Lindsay’s undying love during the good times and the not so good times.

Finally, I am most gracious to every one here today, in mind and spirit, for being an integral part of today’s service. We all offer our hearts up for Ben and pray he have a remarkable journey until we are able to join him.

If I may speak on Ben’s behalf, he would especially thank all of you who sent him chocolate covered strawberries, cookies, donuts, pies, chocolates, and other candy, during the past year. From the many people gathered here today, it is apparent Ben was exactly who I first thought he was when I first met him. Loved by many, particularly because of his compassion, humor, and strength.

Many of you knew Ben before I had the pleasure to, and I am sure many memories of Ben and stories close to your heart have been flowing like a river in recent days and will continue to do so forever.Ben and I first met in 2003 during our first year of law school at Michigan State. In fact, Ben and I sat next to each other in one of our first classes. Little was I to know that over the next 7 years I would become especially impressed with his commitment to love, athletics, education, and work. Little was I to know that we and our wives would become best friends, that we would live within minutes of each other, that we would have some great times with all of the mutual friends we all made along the way. Little was I to know that I would lose my friend too soon.

However, the struggles I, and all of you endure today, are eclipsed by the love Ben had for his family, friends and, especially, Lindsay. In Ben and Lindsay’s first year of marriage, they endured more challenges than most couples who have been, or will be, married for decades. Yet, their love always was constant, strong, unrelenting. I read Ben and Lindsay’s whole blog last night. I was engulfed for hours with a rainbow of emotions, but, the underlying theme, was that Ben and Lindsay were, and will always be, soulmates.

Lindsay once wrote “Ben shows what it's like to keep on with life and to laugh at even the toughest times, especially when all you ‘really want to do is pull a blanket over your head and cry’ Every day together is a blessing and I am thankful to be able to help Ben.”

In describing his enduring love for Lindsay, Ben said, “when we vowed to love each other "in sickness and in health", we never could have imagined this was around the corner. I never could have imagined anyone more perfect to help me deal with all of this. Lindsay always comes home with a smile on her face. . . . She has been strong through everything we've dealt with, and I couldn't be more appreciative. I love you, Lindsay”

Through Ben’s fight, he and Lindsay were a testament to the fact that Life is about love and, really, only love. Love for each other, love for family, love for friends, love for the earth. Ben and Lindsay’s love has transcended millions of miles of this earth as evidenced by all of you here today and the countless number of kind words of support and sympathy which have been offered to them over the past year by family, close friends, distant friends, students and even some complete strangers.

I share with you that, in describing his love for all of you (as well as those who may not have been able to be with us today), Ben wrote “I appreciate everyone's support, it's been nice hearing from so many people I lost contact with. I know at some point we entered each other's lives for one reason or another, and I'm glad you appreciate that reason and re-connected with me, even if it's been awhile, or continue to be an instrumental part of my life” “Your wishes, support, advise, strength, stories and love help make each day enjoyable.

I'm not the type of person who sits and thinks about the disease I have or talks about it regularly. But it's nice to know that there is a group of you out there that I can come to when I do have something to say”.

Ben wrote in his first blog entry that “with the support of all of you, and Lindsay, and the love everyone I haven't spoken to in years has passed on, we are all certain I will beat this.”

Now, Ben may not have been able to conquer cancer (a foe which takes many of our loved ones from their life on earth), but he endured it with a true valor, an attitude which reflected his soul would never be held captive because of his illness. No. Ben…. put up a remarkable fight, ……unrivaled by any challenge which I, …….and I am sure many of you, …..have ever seen. I tried and tried to find a quote for Ben, Lindsay, his family and loved ones to provide some comfort. One which stuck out was, Unable are the loved to die. For love is immortality. ~Emily Dickinson

However, why we are here, is to simply say “I love you Ben” and “We got this”!

ahhhhhh.......this is the last change i mean it!!!!!!

OK so there has been a change for Thursday the burial will be at Fair Plaines Cemetery. This is in Grand Rapids. The address is 2056 Diamond NE, Grand Rapids, MI, 49505. Sorry again for the change. The time is 11:30 and all are welcome...all are welcome to come.

update update, sorry for the confusion

For clarification tonight the visitation is at 7:30-9 at Ira Kaufman Chapel in Southfield, MI, 48075
please call with question 248-569-0020

The funeral service will be at Birmingham Temple at 2pm in on Wednesday December 1st at the Birmingham Temple...12 mile between Inkster and Middlebelt in Farmington Hills. People are welcome to come to Dianne's for Shiva at 7 pm however immediately following the funeral we are requesting privacy.

As for Thursday the burial will be at 11:30 at The Greenwood Cemetery. 1401 Leonard St NW, Grand Rapids, MI, 49504. All are encouraged to come. Shiva services will be conducted at Dianne's house at 7 pm.

Arrangements

OK so here is the deal.......
So tomorrow we are having a visitation for Ben at Ira Kaufman funeral home. It will be from 7:30-9:00. People are invited to come to Dianne before beginning at 4:30. See address below.

Wednesday we are having the funeral. This will be at 2pm at Birmingham Temple followed by a ceremony at Clover Hill Cemetery. Following that we will return to Dianne's Home for a gathering. 4830 Park Hill Ct., West Bloomfield, MI, 48323.

Thursday we will be having a formal burial in Grand Rapids, but this is for close family and friends. I am not sure the time on this yet and then we will return to Dianne again to sit Shiva and close out everything.

We appreciate all your love and support.

All Good Things.........

I wish that I could say that I knew B all my life, but unfortunately I have only had the pleasure of knowing him and loving him for the past 6 years. I guess that is not entirely true because B and I first met 9 years ago at MSU. Fate has a funny way of stepping in and it dealt me a great card, meeting B.

B and I first met 9 years ago at MSU. Both he and I as well as my best friend E Dawg were all Kinesiology majors. B has such a dynamic personality that I was immediately drawn to him. The three of us became best friends, saving each other seats in shared classes, doing group assignments together, sharing rides, studying for exams, and a little bit cheating here and there....honesty first, honesty first. Both B and I had significant others during the early years, so our relationship was strictly one of genuine friendship. After graduation B and I still remained friends, but it wasn't until July of 2005 that special things started happening.

Unfortunately in 2005, B and his family suffered the loss of his Stepdad, and for whatever reason late one July night I received an interesting phone call from a very drunk friend.....guess who? B said that he had been thinking of me lately and was wondering if he could come and visit me in Grand Rapids. I had just graduated from Northwestern, and by this time B was in his third year of Law School. I couldn't see the harm in seeing him so we made official plans and B came to see me in GR. I remember the first visit like it was yesterday.

Megs, Nick, and I were all living together in the Tremont house and we had decided to have some friends over and to head to downtown GR. We started the night like we started many nights in those days, with a few beers, a round of shots, and a ride to the bar, courtesy of Megs and Mike. It was really a great night and B and I picked up where we left off. The only change, was that by now, both he and I were single. What started as a visit to GR every other week, quickly turned into a very serious romance. I knew that B was the one, and I only hoped that he too felt this way. Within months of dating, B said the words every woman longs to hear....."I Love You Lindsay." My heart swelled with joy and I just knew that fate had finally stepped in.

After B's graduation from Law School, we decided to try our hand in Chi-City. I, of course, was familiar with the town, and B too had lived and worked in Chicago during the summer months of Law School. After finding out that B had officially passed the bar, he and I started to build a life together in the Windy City. Both he and I had a close group of friends that had been living there, so our social networks were already in place. However it was only through B that I had the pleasure of meeting some of the most wonderful and most important people in the world to me C and D.

C and D are B's first cousins. They are both known to be tough cookies, but for me it was easy. I immediately fell in love with both of them. I just wanted to spend more and more time with them, and they quickly became some of my best friends. Chicago was easy with them by my side. If I needed to find a great club I called D and if I need to find a great restaurant I called C. On top of that C's husband was born and raised there so he too was a great resource during our time in Chicago. Additionally C has two beautiful little girls, and B and I were there to see them grow up.

B and I's love grew and blossomed in Chicago. We learned many tough lessons but we learned them together. Chicago holds so many memories for us. Chicago is where we got Bear, where we purchased our first home, and where we got engaged. It is the place where B did the things he enjoyed most in life, sports. It is through the softball leagues and golf that B and I also met some truly special people. Chicago will always mean something to B and I.

Fast-forward to August 8th, 2009, it is B and I's wedding day. The day I have waited for my whole life. I am one of my last friends to marry, but I know in my heart that B was worth the wait. The day is beyond perfect. We are surround by 250 loving family and friends. B looks so happy and so handsome and I just know that we were meant to be. The day goes by so fast and before you know it we are on our way to Coast Rica for our honeymoon. It is there that we decide it is time to make a change. We both hate our jobs in Chicago, and we both know that it is time to move, so back to the Mitten we go.

I move back to Michigan a few months before B. I do my best to lay the ground work in Michigan so that when B moves, everything is in place. I find us our rental home, I arrange for a move in date, and I patiently wait for my loving husband to arrive. Moving back to Michigan was easy. Both B and I are from Michigan and we both have friends and family very close. The transition was seamless. I landed a great job at OAM and B, a full time teaching position at Grand Valley. Things couldn't be better!

It is now January 2010 and B is complaining of a sports injury. I encourage him to see a Dr.......and you all know the story from here.

Unfortunately B passed away last night. B's fight against Cancer came to an official close. And it's not because he is quit, because he didn't, it's just the cancer was too strong and too advanced. We simply ran out of options.

It almost seems surreal to say he's gone. I went home tonight and it took my breath away. He is everywhere and in everything, it is hard to do much of anything. I am so scared and so lost. I guess I will be seeing him in my dreams. We all lost so much because he is and was a wonderful, loving, supportive, funny, handsome, kind, caring, compassionate, competitive, man. He is my heart, my best friend in life, my soul mate. He will be with us forever in spirit. So I guess you could say this is the end of the blog. We appreciate all the love, support, and prayers during this most difficult time.

B, B's family, Me, and my family don't intend to return phone call or emails at this time. We just don't want anyone to have hurt feeling, but listen this entire process has been exhausting. I just don't have the energy to talk about what's going on.

All of you that have had the pleasure of knowing B are truly blessed. B is special plain and simple! I will post funeral arrangements on the blog shortly as we are still working out the details.

A Time for Change

B and I have officially been at Spectrum for the past 5 weeks and we have come to realize that it is time for a change. As of tomorrow B and I will be moving to Trillium Woods in Grand Rapids Michigan. This is a hospice home. For most of us, including B and I, hospice is a very scary word. But only in learning what hospice really represents have we come to appreciate what hospice has to offer. Hospice offers what Spectrum has been lacking and that is hope. As Dr. # 12 said, "Dum Spiro Spero", While I breathe, I hope. This happens to be the state motto for South Carolina, and we are living and breathing by these inspiring words.

We hope that B feels better, that B walks again, and that B has time to rest and heal. At this point we are stopping treatment, but that does not mean that we won't revisit treatment. B's body just needs a break and we intend to give it the break it has earned over the past 11 months. From what I understand Trillium Woods is wonderful and offers a family environment. I am sure that we will enjoy our time there and once we get settled I am sure that B and I will be open for visits.

It has been a long and tiring 5 weeks and we are much looking forward to the change. B and I are heading out early tomorrow morning. It is the prison break we have been talking about. We intend to celebrate Turkey Day with D Bone, B's Lil Bro, Nanc, Big D, and possibly Jr. It should be a nice day and we are glad to be together.

I guess I wanted to let people know that we are changing residence and to let you all know where to find us. I promise to update more after this newest transition. We appreciate the thoughts and prayers.

Look for more updates in the future and thanks again for stopping by.

You Win Some, You Lose Some...More Like You Lose Some and Then You Lose Some More!

Today marks 4 weeks and 1 day that B has been in the hospital, but who's counting right? At this point I don't really know what to say. B's condition is much the same. Unfortuantley the Dr.'s have yet to hit the sweet spot with B's pain meds. It was early Monday morning when Dr. # 4 came into B's room and was very disturbed. B's pain was so bad that he was yelping like a wounded seal. His face was so twisted, and I think he said the "F" word over 30 times. Dr. # 4 said that he was going to consult with Dr. # 12 about a new course of treatment.

Dr. # 4 felt it might be time to try samarium. This drug is actually a radioactive isotope. It is given as an infusion and is used to treat bone pain in patients with serious metastatic bone involvement. It has proven to be very effective and very fast acting in treating bone pain. It is usually used to treat patients with prostate cancer, however at this point, Dr. # 4 thought that it would be valuable to give it a whirl. The only problem with samarium is that is can really lower the blood counts, and could effect B's chemotherapy treatments. But at this point getting the pain in check is everyone's primary goal.

Dr. # 4 consulted with Dr. # 12 and they both decided it was a go. So yesterday B had to have a bone scan and actually had to be moved to a lead insulated room. This is standard hospital protocol for someone who is receiving radiation treatment, and who effectively glows in the dark. I often times flashed to the opening scenes of the Simpson's where Homer is holding radioactive bar just before if flies into his protective suit....you all know what I'm talking about. Last night around 6, B was taken to the basement and the bone scan was set in motion. It was absolutely the most horrify experience both D Bone and I have had to date. B was screaming so loud that my heart was racing, and I actually had to tell myself to calm down. He was crying for them to stop to the test, and he invented new swear words. He was blending shit and damn and it came out shadamn. I all but wanted to cry....all I can say is disturbing.

So now it is 7 or so and we are back in his new room, trying to calm him down. Finally after a few hours he was back to resting comfortably....phew. By this time Dr. # 12 stopped in to see how things were going. We spent some time together and I had a few questions including the purpose of the bone scan. He said that he needed the bone scan as a baseline to chart any progress and that we were definitely a go for tomorrow with the samarium. B, D Bone, Auntie R, and I were all looking forward to the shot and to the possible benefit it could provide.

I had visions of B feeling better and being able to enjoy Thanksgiving with his loving family. I dreamed of us walking together on the beach, holding hands, watching Bear splash around in the water. All I want is for B and I getting some normalcy back. It pains me to go home and see pictures from our wedding. I want to throw them out the window. I still can't believe this is happening to B. But as I said I had hopes that God would come to the rescue with this shot. I knew it was going to be the answer we had been waiting for.

Now it is Wednesday, and I have come over to the hosptial on my lunch to spend time with B and check in. Coincidentally Dr. # 12 showed up and informed us that B didn't qualify for the shot. It just figures. He said that he didn't know there was a prerequisite to getting the injection and only after reviewing the scan and talking to the radiologists did he learn that B couldn't get the shot. I about died. D Bone had tears in her eyes. I was able to hold it together to get the information from Dr. # 12, but burst into tears the minute I got back to work. You just can't image our disappointment. I guess there two types of metastatic bone cancers, and B has osteolytic bone disease, eliminating him from this treatment. Dr. # 12 explained that B's bone disease is an erosive bone disease and the shot would be useless for treating pain. Again, I still can't believe it, and I'm crying now as i relive this experience again through the blog. This picture says it all!

So what does this mean for B? Not sure. Not sure how they next plan to treat the pain. And just imagine how hard it was to tell B. He almost cried too. Everyone keeps saying we are going to catch a break, but when? When is this break coming? I'd sure like to know!

There also has been talks of inducing B into a coma for 72 hours, but this would be a last resort. Dr. # 12 said that it might help to reset B's pain receptors, but B would have to go on a feeding tube, and most likely a ventilator with the possibility of intubation. I don't know about you all, but that sounds like a load of shit to me. Again the Dr.'s plan to adjust the meds and to try new things so we have hope that something will work. I am a small person, with a small heart, and it has been broken time and time again. I am not giving up hope and I am not quitting the fight, nor is D Bone or B, but this fight is kicking our butts. I will never quit fighting for B, I love him with my small heart. It would be a gross understatement to say that we're tired, we are beyond tired.

We hope for better days ahead, for B's pain to go away, and for a cure for his disease. Thanks again for the prayers, support, and gifts.

Love always,
L

If you don't have anything nice to say.......

So B and I are quickly approaching the 4 week mark at our latest residence 5 south. It would be an understatement saying that this rodeo is getting old and fast. It is hard to believe that when we came here almost 4 weeks ago, we both only thought that we would be here a few days, boy were we wrong. The reason I haven't blogged in so long is because I don't have anything good to report. You all know what your moms say when you don't have anything good to say.......if you don't have anything nice to say then don't say anything at all. Well that was the philosophy that I have been following, but I thought that everyone might be a bit curious as to what is going on, so here is a quick update.

I guess I wish that I had more to update, but at this point not much has changed. B is continually in constant pain. Even with the addition of the interthecal catheter, not much has been accomplished in terms of putting the pain to bed, so to speak. B is still on IV Ketamine, a new drug, Sufentayl, Prialt in the pain pump, Valium, and IV Methadone and nothing seems to be helping. The Dr.'s are working tirelessly to get B some relief but they are still missing the mark. For much of the day B is sleeping, which is good since he is behind on almost 10 months of sleep, however during his waking hours, 2-3 hours per day, he is in terrible pain, and it is very difficult to quiet him down. It seems the only thing that takes his mind off the pain is massages. There are some days when he is getting more than just one massage, and even that is not enough.

We are even looking to alternative options at this point. I have reached out to an internal medicine Dr. who specializes in acupuncture. I guess you could say we are desperate, more than desperate. And to be honest I am not sure what we are doing here in the hospital. It doesn't seem like we are gaining any ground so why not let us go home. I am sure we could arrange for the delivery of a hospital bed, and an at home RN to manage the IV pain meds, so why not put that option on the table? For a while there I wasn't' sure that B really wanted to go home, but as of late he is expressing some interested in getting the hell out of here too. Enough is enough, and I will be damned if we spend Thanksgiving here. I mean it, it will break my spirit. I can't handle it, just can't!

B also has had two rounds of chemo since our stay here. Chemo is currently in full swing. The new chemo is every week and B seems to be tolerating this new treatment well. So far he has not experienced any significant side effects so that is a positive. This chemo is directed to treat upper GI cancer, and Dr. # 4 is hoping for some signs of improvemnt. He hopes that this chemo shrinks some of the newest tumors and helps to prevent any further spread of the disease. Dr. # 4 hopes to complete between 4 and 6 rounds before evaluating any progress. I would suspect that Dr. #4 will rescan B in a month or so. We also have radiation as an additional option, plus a possible one time shot, that is also a form of radiation to help in relieving some of B's pain. However we can't visit radiation until chemo is complete since doing both at the same time could really lower B's blood counts.

I honestly mean it when I say that I have never never never never seen anyone suffer as much as I have seen B suffer. No one can really understand or appreciate the situation unless they are here to see it/live it/breath it. Many people say they understand B's pain, but they don't, they can't because the pain is so intense that many people would not be able to handle it. Nothing that I write in the blog even comes close to descrbing B's pain, plain and simple.

Please don't forget prayers for B, for his pain, and for a cure to his cancer. The hope is still alive and team Muttz will be home soon!

Plan for the Future

It has now been over 2 weeks and B and I are still posting up here on 5 south. This week we faced many hard decisions. Following our shocking news on Saturday, B and I had to play a long game of hurry up and wait. It is a fact that not much happens in the hospital over the weekend so we had many questions that we wanted answered, but we had to wait for Monday, when everyone came back to work.

So first things first, we met with Dr. # 4 and he again explained to us that the cancer had spread quite a bit in the spine. He reported that a large amount of the spread is in the lumbar spine, but that many other areas of the spine are also affected. Dr. # 4 presented many scenarios, leaving us with a tough decision. He explained that with B having severe pain, he could recommend radiation to the most problematic spots. The problem is there are too many spots in the spine to radiate them all. So we could pick and choose which ones to radiate and go from there. Dr. # 4 said that radiation is simply for pain management and will not help in treating/controlling/preventing the cancer from spreading. Radiation is not cancer preventing but is strictly used for pain management. Dr. # 4 also presented scenario number 2, where we would start chemo this week. The chemo we hope will work in treating the cancer, preventing further spread, and effectively shrink the tumors (providing some relief). However Dr. # 4 said that there is no guarantee that B is going to feel better in terms of his pain and that the chemo may make him feel worse. And then there is scenario numbero 3, where we start chemo, and return to radiation later, or maybe somewhere in between chemo treatments. We simply can't do both at the same time....to risky for B's health.

This obliviously is the hardest decision we've had to make, and there are pros and cons to all 3 situations. After much deliberation with Dr.'s and family, we decided to move forward with the chemo. The new chemo will be a chemo directed at treating upper GI cancer and B starts treatment here in the hospital tomorrow. Chemo is going to run every week and will continue for 2 months, at which point they will rescan B and figure out if we are on the right track. Dr. # 4 feels this is a good decision, and like he said B can always revisit radiation later, so fingers crossed that this chemo works.

In addition B is feeling much better and has seemed to shake the C Diff. The antiobiotics seemed to have done their job and we hope to never, and I mean never, meet Mr. C Diff again. Dr. # 12 and 15 continue to work together to dial in the right mix of pain meds, and at this time they have adjusted the rate and amount of meds in his catheter 3 times. Dr. # 15 wants to be sure we are taking things slow since the prialt aka snail poison can have major hallucinogen effects. We have to make sure that B is not hearing voices and that he is accepting this amount of prialt appropriately. So far so good.

As for getting the hell out of here, not sure. We asked Dr. # 4 his feelings on getting B home and he said that right now B is too unstable to leave the hospital. He feels that B needs to be monitored closely and he feels that if we head home, we will most likely end up right back here on 5 south. So if you need us you know where to find us.

Lastly, the staff is working hard to get B more mobile. He pretty much has been in bed for the past 2 weeks and as a result he has developed 2 bed sores. They are stage 1, but still very very painful. The RN's are keeping a close eye on things and are trying hard to move him around every few hours. It is our goal to get B out of bed 3 times a day. We don't need any more problems at this point, that is for sure.

I promise to update as we learn more. Thanks again for the support and prayers.

Tests of a Different Level

I come to hate the saying that thing can't get much worse, because in our case they can and they will. As most of you know B is still in the hospital. He has been here almost 2 weeks now. I have come to like most of the staff, but let's be honest, I wish I never knew any of them. So Friday wrapped up with the final few tests that all the Dr.'s had been waiting on. D-Bone and B's lil Bro came up to the hospital early and were there to support B while I attempted to work a full day. The first test was the hip aspiration. From what I can gather the procedure was a success and the radiologist was able to extract about 120-150mL of brownish fluid from B's hip. It was the hope of everyone here that this aspiration would relieve some of B's hip pain and would yield some improvement in his recovery and return home. The fluid has been sent out for analysis and we are still waiting to hear the results. I believe that Dr. # 4 and Dr. # 11 sent the fluid out for cytology to determine if the fluid was carrying cancer cells or not.

Immediately following this procedure B was then pushed away on his awesome stretcher for the completion of his MRI. The MRI imaged B's entire spine and hip and up until this point it has been impossible to get the test completed because laying flat on the MRI table causes B tremendous pain. So this time around they made B comfortable by using anesthesia, so they put him out like he was having surgery. This way the Dr.'s were able to get the studies complete and sent out for review. By the time I got to the room B was awake and in terrible pain. The problem is, Dr. # 15 ran a trial of prialt, the snail poison, on Thursdsay and it seemed to work. However the trail only lasted for about 6-8 hours, so by Friday morning B was back in terrible pain. As I understand the prialt is very expensive so the Dr.'s wanted to make sure it was going to give some relief before ordering a ton of it. Well it worked, but Dr. # 15 was unable to get enough of the drug to fill B's pump until Monday at 11 am. So they pretty much told us we were going to have a terrible weekend and that was just the way it was. So, as I said, by the time I got back to his room on Friday things were really bad. I had the RN page Dr. # 12 and both B and I requested conscious sedation. At this point we figured that putting B into a coma over the weekend would be the best alternative. Dr. # 12 didn't necessary agree so he doubled the dose of all the meds B was already on (morphine, dilaudid, ketamine, valium, methadone, decadron), and this pretty much put B into a catatonic state. By 1 am on Saturday, B had no idea who I was, or where we were. He was totally tripping, for real tripping. He was saying some of the craziest things and his eyes were moving so fast they would not focus.

Finally by Saturday morning B seemed a bit better and a bit more comfortable. D Bone came back to the hospital very early so that I could head home for a shower and to do a few things around the house. The plan was for her and B's lil Bro to head back to the D today, Saturday, for a break and to get caught up on some things back home. D Bone's plan was to come back on Monday, and hopefully get B back home. So I returned to the hospital around 12 or so and D Bone and B's lil Bro hit the road. B's dad and Stepmom were scheduled for a visit today so B and I just hung out until they got up to room 5272. The visit was going great until Jamie, Dr. # 4's PA, came into the room to check on B. For whatever reason I decided to ask her if the results were in from the MRI. I knew things were bad when she said " I had hoped you wouldn't asked, but since you did I am obligated to let you know what is going on". She proceeded to tell us that the MRI showed a ton on new cancer spots on his spine. She was very delicate and said that the on-call oncologist would be in within the hour to review things with us.

I was at a total loss for words. I really didn't expect them to tell us that the cancer had spread. I didn't even think that was an option. B just burst into tears and I followed suit. I mean how can this happen? Really more cancer? Haven't we had enough fun already? Isn't it time for a break? And by this time D Bone was nearly home. You know how hard it is to call D Bone with this news? It is terrible being the person who has to deliver news to a mother that her son's cancer has gotten worse. Not to mention we had a million questions and the PA was deferring all of them to the on-call onclologist. All we knew was that things were bad, but we weren't sure how bad. About 30 minutes later, B's Auntie R, the Dr., called us and had us write down some serious questions to ask the on-call oncologist. At this point neither B or I could get a grip. It seemed every time I stopped crying, I would start up again. I felt like our little nieces who cry hysterically when they misplace their blanket, but they're 3, I'm 29. I immediately called my parents and asked that they come up to the hospital and bring Bear. There is nothing better than seeing you very own dog, and we've been missing her, and I was sure that she would bring a smile to both our faces.

About an hour later the on-call oncologist came into the room to deliver the news. The cancer has spead, and quite a bit. He told us that B has a spot in every bone in his spinal column, about 30 new spots or so. The spots all vary in shape and size, from 2-3mm to 12-15mm. From a treatment stand point he said that the main goal is to get B comfortable and out of pain. So it could mean more radiation, chemo, or both at the same time. He told us that this is something that we will discuss at length with Dr. # 4 on Monday morning. He told us that the cancer is only in the bone and we should remain hopeful since in the past radiation has worked well to treat cancerous spots in the bone in B's case. He didn't really say much more other than he was sorry and that he would again be by to see us tomorrow. I seriously almost passed out. My hands were shaking so bad, and by this point B had pulled the sheet over his face. What a joke right? There is nothing to say. I feel helpless and like we are drowning and the surface keeps getting further and further away and it is getting harder and harder to reach air. I mean what are we supposed to do at this point? What does this mean? We also asked about the results of the hip biopsy and those came back negative, so I guess that is good.

So you can pretty much say we had a f-ing terrible, horrible, gut wrenching, exhausting, sleepless Saturday, how perfect! D Bone is heading back to GR agian today and she is bringing Auntie R. We need to figure out what to do from here. I think we agree that it is time to get a fresh set of eyes on B for real, but when and where? There is discussion about Karmonos, but I wonder if we should take him to Mayo, Texas, Kettering, anywhere that can help him. I would take him to China and carry him on my back if I had to. So I guess we will just have to wait and see. As for now we are all digesting this info, we certainly appreciate the thoughts and prayers and I will again update later this week once we have more information.

Oh and to add insult to injury, B has C Diff, need I say more!

Surgery Done but Recovery is NOT Fun

L, again live from 5 south, and what seems like home these days. When I last blogged, B was awaiting surgery, well today marks day 3 post op and B is still in pain. From a surgical standpoint, the surgery was a great success. Dr. # 15 was able to place the catheter exactly where he wanted it, and he is hopeful that this new approach will work. Monday ended up being a pretty long day. The surgery started a bit late, and B ended up being in the OR for about 2 1/2 hours. The RN who assisted Dr. # 15 during the procedure came out to let us know that it took about 45 minutes to get B placed comfortably on the OR table. I guess that B's pain was so high they had to move him in little increments, and this took much longer than anticipated. While B was being sliced and diced, D Bone, Kid Bro, Nanc, Big D, and I all waited and passed the time with gossip and some Netflix viewings.

Finally Dr. # 15 came out and told us that the surgery was over. He told us that he has been working in pain management for a long time and that B's case is one of the worst he has even seen. He classified B's pain as extreme. Before wheeling B off, his pain was a 12 out of 10. It was clear to everyone, even perfect strangers, that B was suffering. After the surgery they called me back into PACU where B was resting. I must say, this was my favorite part of the day. After having such a long and hard day, B and Versed were the perfect remedy. First off, B did not believe me that the surgery was over. I think the conversation went something like this. L: "Hi honey your surgery is over and you did great." B: "don't lie to me." L: I swear your surgery is over." B: " I hate when you lie." L: "Bible swear the surgery is over." B: "Don't start with the Bible swear." and then he got quiet a minute before telling me that he was going to break my glasses on my face. I told him, simmer down now or I will break your glasses. This obviously did not bode well with B because he apologized and begged me not to break his glass. Again, B got very quiet for about 15 minutes before whispering that he had something to tell me. He told me to learn very close and then he proceeded to congratulate me on having a baby girl. What, a baby? I think all this talk of epidurals and such has Mr. Muttz very very confused.

We finally got back to our room around 7:30 or so. B was still very sedated so I headed home to shower and to drop off Kid Bro. D Bone and I stayed the night with B on 5 South. It actually wasn't' that bad of a night. B rested pretty well, except for when they came to take him for an X-Ray, which was not fun at all.

So as it stands the pump is in. Dr. # 15 is working hard to figure out if this is going to work for B or not. It is too early to tell, but yes B is still in pain. He is particularly sore in his abdomen and lower back, where the incision and stapes reside. He also has to wear an abdominal binder, which can best be described as Spanx, or a corset for men. It is not comfortable, and not pretty. And the incision is a pretty good size and it will take about 2 weeks to heal. However B is reporting the pain feels a bit different and the pain may be a bit lower. We are not sure when we are busting out of here, but are hopeful to be home snuggling with perro and gato soon.

As for today, they plan to take B down for a hip aspiration. The CT scan showed some fluid in his right hip. Dr. # 13 wants the fluid removed from the hip so that they can assure there isn't an infection. The fluid in the hip can be from a number of things, however all the Dr.'s want to be sure that this fluid is not something serious. Also they feel that by removing the fluid, they will be able to relieve additional hip pressure/pain. This is a procedure they attempted to do yesterday, however with B's pain so high they were not able to complete the procedure. So the hip aspiration is back on tap today under anesthesia. The fluid will be biopsied and we hope to have some additional answers by days end.

B continues to rate his pain as a steady 6 while he is resting in bed, and that number is about an 8 out of bed. Dr. # 12 also continues to make adjustments to the additional meds so we are hopeful to get to a 0 and soon. Please pray for us. This journey/cross is getting to much to bear.

Thanks again for stopping in and more to follow soon.

Another Surgery

This is L coming to you from 5 South. I have been staying here with B since Tuesday, and I know that I can speak for both of us by saying that we are ready to bust out of here...prison break style. With all our downtime we have been plotting our escape route. I figured the fasted way out of here would be to throw a chair through the window, tie some bed sheets together, and lower both B and I onto the parking ramp, three floors below. I will then throw, rather place, B into the hatch and squeal outta here in the Forester. That is what you call wishful thinking...haha. Since the last update not much has changed. The entire team of Dr.'s are working hard to get B's pain managed. Unfortunately at this point B is still living with some significant pain. Don't get me wrong he has had some relief, however he is still experiencing some ridiculous pain attacks, bringing both of us to tears. The worst attack to date happened late Friday night. I have to say that I feel pretty bad for the second shift RN, who showed up just as the pain climbed through the roof.

B was yelling so loud on only the quietest floor in the hospital. Picture this, a quiet, serene place, where really sick people are trying to rest and recover. And now picture a screaming, cursing 29 year old, disrupting the whole vibe. I tried hard at first to quiet B down, but then I thought, what the hell, and joined in the misery. It was a free pass to swear out loud, even Nanc gave us permission and told us to let it all out. It was a real release, and I am very much looking forward to the next time I get a free pass to yell at the top of my lungs. As his RN said, everyone ends up feeling like crap, because we were all at the mercy of the pain, and the meds. Finally after 3 hours or so, B was back in bed and resting....phew what a blessing. And that night we both slept through the night.

So now it is Saturday and I am so nervous about B and the Spartans. We woke up feeling OK and pretty well rested. We were able to watch the game. And let me be the first to say that watching MSU in the hospital is not ideal for the following reasons:
1, The little TV--I mean the TV is so small that Kurt Cousins looked like Micheal Vick
2. No HD--meaning B lost a good portion of the hair he had just regrown pulling out his long locks
3, No surround sound--we have a dinky remote in which the sounds plays out of . You literally have to hold the remote to your ear to hear the game and Brent Musburger's last slurp of Cpt'n Coke is deafened by Herbstreit's end-of-game celebration.
And Lastly,
4. No YELLING--And for all of you that watched the game understand that yelling at the TV was a big part of the game. B kept telling me to sit down, to use indoor voices, and to use the golf clap. I mean come on, the golf clap! Needless to say the Spartans pulled off a victory that resulted in some heaving LMuttz sweating, and some serious stress. Not to mention B's vitals (including Blood Pressure) had to be monitored more closely during this game. But a W is a W......8- 0: 8- 0 baby! If we can do it again next week things will be looking pretty good for Team Sparty.

After the game B and I decided to take a cruise together to the cafeteria. I took him down in the wheel chair and he steered his IV pole. It was just nice getting B out of the room. We ended up spending 18 smakcers on just junk and sweets, plus 2 apples. The girls who cashed us out were laughing, but the way I look at it, B can have whatever he wants. So we returned to the floor and continued to walk around together for about 30 minutes or so. It was a nice change of pace, and I am just glad that I am able to be here with him. We later returned to the room where B decided he would like to stay in the wheelchair rather then get back in bed. Hindsight would have been great right about now, because by the time we decided to get B in bed his body was beyond functioning. He ended up slipping a little, and landed on his knees, pinning himself between the wheelchair and bed. The good news is that his head was resting on the bed, and he was not hurt, physically. I was not strong enough to get him up myself, so I ran into the hall and yelled for help. It took 4 of us ladies, but we got B back in bed. However by this time B's ego was seriously bruised, and both he and I were brought to tears. He and I are just sick and tired of him being sick and tired....literally.

We were both able to get a good nights sleep. There is nothing better for a sound sleep than a hard pre-bed cry, some kisses, and in B 's case some serious meds. Now it is Sunday and again B is feeling OK. He is prepping his fantasy team's and is looking forward to spending the day watching NFL games with his Lil' Bro and Juancho. I plan to take off for a bit this afternoon, and as B would say head home to shit, shower, and shave.

So tomorrow B is having his surgery. It is scheduled for 12:45. The actual surgery to place the intrathecal catheter takes about 2 hours, and then B will head to recovery for a few hours. He has to stay over night in the hospital so that they can keep an eye on him. He is also scheduled to have his MRI completed tonight when they pull out the epidural. The epidural has to come out 12 hours before the surgery. This gives the staff time to squeak out the MRI and give B a chance to shower B. He is not allowed to eat or drink after 12am, so he is planning a full day of calorie stacking and resting. The intrathecal catheter will be placed under the skin in the abdomen. Dr. # 15, who will be preforming the surgery, and who will be motoring the catheter, cautioned us that there is a risk this might not help with the pain. However up to this point nothing else has worked, so we are willing to give it a shot. Dr. # 15 said that the meds he plans to use are different then the meds they are using in the epidural. Due to FDA regulations and such, they are only allowed to use a few drugs in this new catheter. Dr. # 15 said it may take a few times of making adjustments before he gets the right med mix, so we have to be patient. He made some mention of use a south pacific snail poison with morphine, but hey, if it works, who cares. We just remain hopeful that this will work.

B also has his last radiation appointment tomorrow, and he is very much looking forward to that. I can't think of anything he hates more than the radiation table. Oh and B did have a CT scan late Friday night, and they were able to rule out any spread of disease in his right hip as a possible cause for pain. They still want to look at the spine, and that is why they have the MRI back on schedule for tonight.

I promise to update some time tomorrow night. I know things will be fine, but we ask for additional prayers tomorrow since there is always risk with any surgery. Much love and thanks again for all the support.