There’s no doubt our lives are really ugly right now. This life isn’t what we intended to live. The last year, apart from Riley’s birth, has been a flood of awful.
Ironically, under all this yuck runs a strong current of truly beautiful moments, experiences, and lessons. One of these beautiful lessons has been about living in the moment.
On April 11, we met with an admissions specialist for Big Bend Hospice. This was a big step for us because it felt like giving up. I assure you that this was an equally difficult and simple decision to make.
Big Bend Hospice has been tremendous at managing Francis’s pain, and wonderful about addressing the needs of the whole family. Their staff is easy to work with and incredibly comforting to Francis and to me. At the same time, we also realize that Francis isn’t getting any better now. We are trying to be intentional about living the best life we can under these circumstances.
Prior to Francis’s (our family’s) admission to hospice, we had reached the limits of Francis’s primary care physician’s expertise in pain management. This isn’t a criticism, it’s just a fact. His primary care doctor was amazing at tracking down the right information and unique delivery methods since a traditional medication delivery method is unworkable with the drainage opening in Francis’s stomach. Most pill form medications and many liquid forms require an extended period of time in your system to work appropriately, and with Francis what goes in immediately comes out.
We also knew that the only option we had for emergency care was the emergency room at Tallahassee Memorial Hospital. We both feared a trip to TMH with every fiber of our beings.
The solution to both of these concerns was enrolling in hospice, and we haven’t regretted it since.
Our priority was getting Francis’s pain addressed. I felt like Francis was slipping away because of the ever-present, intense, and at moments agonizing pain. I felt I was losing him because his only relief and escape was found in bed and in sleep. For much of the day we were separated from each other in different rooms of the same house, and when we were in the same room he was so often asleep that I was essentially alone.
Thanks to the experienced hospice medical team, Francis’s pain patch (Fentanyl if you’re wondering) was nearly doubled in strength. He had also been taking a liquid morphine by mouth that was doubled in dosage for any breakthrough pain – pain that breaks through the constant relief provided by the Fentanyl patch. We’re now using a morphine delivered by syringe into his PICC line for this type of pain.
Within a day or two of these initial changes, Francis was awake more and able to move about the house and even help with housework. As an aside, it’s amazing how the mundane everyday tasks like washing dishes and doing laundry are the first things that he does when he feels like being up. I suppose that’s because it makes him feel productive and, more importantly, normal.
I was ecstatic to have him back, but I was also struggling.
You see, I had gotten a glimpse of what I believe is the worst part of watching Francis go through the progression of his cancer. I had witnessed a pain so intense to him that it made the strongest man I know break down in tears. I had heard him begging me to make the pain stop. I had seen his clinched teeth, balled fists, and writhing body.
Every moment that he seemed to be more normal was a moment I was struggling to enjoy because I was afraid that the normal moment was fleeting. I feared that I’d soon be whisked back to that horrible place of his agony.
Thanks to the ugliness of the experience with uncontrolled pain, I’ve learned a beautiful lesson – one I hope I never take for granted.
For the first time, I truly understand what it means to live in the moment. It means that when Francis has a good moment I can’t let my fear rob me of the immediate moment of joy. Living in the moment has nothing to do with skydiving, whitewater rafting, or rock climbing – all the white-knuckled activities I once mistakenly thought allowed people to live in the moment.
Living in the moment isn’t about SEEKing anything special. It’s about SEEing the special in anything.
It’s about keeping my mind open to seeing the beauty in the yuck. I’m not perfect at doing this and I’m really not even that good at it, but I finally get it. Now that I get it I can do my best to enjoy the here and now for what it is, and keep that fear of what may be lurking in the next moment from stealing the joy of this one.
I know it goes without saying that this cancer journey is tough. We’ve moved from hoping tomorrow is a normal day to hoping tomorrow is a good day. There are highs and lows, victories and struggles.
What I find to be my ever present companion in this post-Houston reality is anger. I know it’s one of those stages of grief. I know it’s a very normal thing to feel. It just isn’t normal to me.
I’ve told close friends and some family members, including Francis, that I’m worried about losing my constant wrestling match with my inner mean girl. It makes me short with Francis and our children. I get impatient and feel put out by dealing with what I judge to be trivial. I become irritable by having to deal with uninformed or uncaring members of our medical team.
This experience has shown us the terrible and tragic loss of who we are as individuals and as a couple. The cancer is slowing killing parts of us and our relationship that we already mourn. It is also magnifying all those flaws that get to stay hidden by a life without the pressure and pain of a terminal disease.
My anger is clearly something I need to work on to be the woman, wife, and mother I hope to be. I may do a good job of keeping it in check most of the time, but not all the time.
My failure was painfully obvious to me last week when I got an email from a gentleman named Cameron Von St. James. He writes for the Mesothelioma Cancer Alliance blog. Back when we were in Houston preparing for Francis’s surgery, he asked if I would be willing to publish a guest post from him on our blog. I told him I would take a look, but we were in the midst of a stressful and frightening time with the big surgery approaching.
Cameron’s wife is a mesothelioma survivor. She had a radical surgery and extensive recovery, during which Cameron was a caregiver for his wife and their infant daughter. There are many similarities to our story. We just had different outcomes.
When Cameron contacted me last week, he was following up on the draft blog post that I told him I would look over after we got past the surgery. His follow up email was timely as he was asking me to consider posting during Asbestos Awareness Week.
The day his email arrived we were once again challenged by Francis’s g-tube. That challenge would lead to an unscheduled trip to the surgeon, and ultimately the temporary removal of the g-tube. However unexpected or stressful the events of the day were, it was no excuse for my response.
Cameron was in the wrong place at the wrong time – electronically speaking. I used the anonymity of the Internet to give him a piece of my mind without consideration for his circumstances or his feelings. I’ve regretted that email response every day since last Wednesday.
I never wanted to do something like this. I don’t ever want to diminish the circumstances of others who have individual stories to tell that are just as important to them as ours are to us. Sadly, last week my mean girl won.
I’m a work in progress. Just like I hope tomorrow is a good day, I hope it is also a nice one where I can keep my mean girl in line. Like everything else we’re facing, I just have to take this battle with myself a day at a time.
There are many people who have asked me what they can do or say that is helpful. I’ve perused the web for other intelligent input on the subject of what to say or not to say to someone with a terminal cancer diagnosis. I now have a few weeks of experience under my belt as well.
There are a many articles, blogs, and Yahoo! Answers on this subject. I find that I, myself, have been guilty of not knowing what to say or saying the wrong things. It seems that something about cancer affects our filters/manners/politeness, and in an effort to say the right thing we say exactly the most awkward, wrong thing.
I wanted to share what we’ve found most poignant or helpful in all of this mess we’re facing. You’ll see some of these on both sides of the say/don’t say equation depending on the article/blog/answer you read. This is where we come down on things.
I don’t know what to say…
Frankly, many times Francis and I don’t know what to say to each other, our families, our friends, our colleagues, etc. Being honest about not knowing isn’t awkward at all.
This really sucks…
We agree, and it’s always nice to know others hate this as much as we do.
Is now a good time to talk about it?…
The strange thing about where we find ourselves is that each day is infected by cancer. We can’t take a vacation from it. It’s like a houseguest that we can’t get rid of and that insists on joining us for every outing. Sometimes we want to talk about it and sometimes we want to ignore it all together, try our hardest to reach back to what normal was and feel that way again – even if for just a moment.
If you have questions, by all means ask, but understand (and take clues from how much detail we disclose in our responses) we may not feel like sharing much or we may be in the mood for a mind dump. When in doubt, ask if it’s a good time.
Don’t pity us, and don’t ignore us…
As I’m sure you can imagine, we don’t need to hear how sorry people are for us because we hate this too (see “This really sucks” above). Having people tell us, “I’m so sorry” leaves me in an awkward position of not knowing how to reply to the statement.
The strange thing about cancer is that every diagnosis, every type, every individual with the diagnosis is unique. It doesn’t affect two people the same and no two people react to the diagnosis and/or treatment the same. Then you throw in the family and close friends and the experience for each member of the family and friend is equally unique.
As a result of this individuality in cancer, it’s a disease that is painfully isolating. It isolates you from family and friends because of recovery from surgeries and treatments that require quiet and rest and avoidance of germs. It has isolated us from each other because as much as we are together in all of this, only Francis knows what it feels like and only I understand what it is to be his caregiver and the one facing a future without my best friend and the father of our children.
Please don’t ignore us because you don’t want to discuss the details or because you don’t know what to say. We appreciate the effort to reach out to us or keep in touch even if we don’t always or ever respond. Each of those contacts remains a tether to a world where things aren’t as painful, sad, or dark as our world sometimes feels.
Let me know how I can help…
The outpouring of offers of help from family and friends has overwhelmed us. When we see the silver lining of a terminal cancer diagnosis it is often a renewal of our sense of hope in humanity.
I promise that if there is something that we need we will ask. Please understand that if we don’t ask we aren’t blowing you off. Sometimes it’s exhausting keeping everything I have to do to care for Francis and our children straight. Having to think of something I or we may need immediately sends my sleep-deprived and emotionally drained brain into the blankest of blank modes.
I will be honest that I feel guilty about not being able to let people help do more. I know family and friends feel guilty about not being able to help us more. Let’s agree to stop that guilt and you can just know we’ll ask and we can just know you’ll accept when we come across something specific to do. Deal?
If you would like to do something specific, see this guest post on the blog for sharing memories about Francis from our dear friends Sarah and Mindelynn or this food delivery planning page organized by our dear friend Rachel.
I’m still me even though the cancer will take me/my spouse…please don’t let it take you from me/us…
We’ve needed both time and space to deal with the bad news about Francis’s cancer together as a couple and a family. It’s what I have asked for here in the blog and something that technology allows us to maintain by silencing phones and unplugging laptops for a bit.
We still feel a great need to pull the plug and pretend to be hermits now that we’re home and reconnecting with friends. After all, Francis still has some recovery from the surgery alone, and the side effects of late stage colon cancer are new each day.
Francis has frequently commented about the pain of fading away and things related to that. I can identify only through the collective “we” and the current “I” that I know are fading away as well. Watching your spouse and the “we/I” I love fade away is painful enough, but then the things that make us who we are as individuals and who we are as a couple are also being lost. I know I can’t adequately describe Francis’s perspective and pain related to this concept, but he’s hopeful he can tackle this in a future post of his own as he works now to wrap his head around it.
To say that we need to hear from and visit with family and friends is an understatement even in the most hermitic of moments. It keeps us sane. It allows us to focus on the good in life, provides us a break from each other (yes, I still can get on Francis’s nerves and he would admit that he can be a difficult patient), and gives us the luxury of a laugh when we desperately need some comic relief (just not too hard or Francis feels like he will bust his gut – literally).
We have many requests for visits or phone calls from locals and out-of-towners. The best way to be in touch with us is to send an email to both of us or through the blog and let us know when or how (phone/in person) you’d like to visit. Include your phone number if you just want to chat. We have a long list of calls/emails/visits to return/reply to/schedule. We will get around to it, but we’re still primarily focused on giving Francis time to rest as his energy level fluctuates throughout the day.
Let me know when I can take the kids/watch the kids/come play with the kids…
This is the hardest for us. We probably worry more about how all of this is impacting them now and how it will affect the course of their lives in the future. It’s what keeps me up at night and makes me most frightened about in a future without their father.
We were fortunate to have a brief meeting with a psychologist at MD Anderson where we could discuss the children and how to do right by them. One of her many suggestions was about caretakers and strangers in and out of their lives in the coming weeks and months. She encouraged us to keep caregivers to a very small number (3-4) and keep to their current routines as much as possible. These things help them both feel loved and secure in a world that will be full of change.
On this I am inclined to be extremely protective. It isn’t because I don’t want people to watch them or play with them but because I want to protect them. I’m sure you can understand this.
In all of my protectiveness of them, I also realize that what keeps Francis and me anchored to joy and hope for the future is the sound of Couper’s little bare feet running across the hardwood floors between his room and ours, and the wrinkled-nose, five-toothed smile of Riley when she wakes from her naps or turns around and catches us watching her. Having them with us protects Francis and me probably as much as we protect them.
“Life is unchartered territory. It reveals its story one moment at a time.” – Leo Buscaglia
Our dear friend LeAnne has made us guest contributors to this blog so that we can invite you to participate in an exciting project. We (Mindelynn and Sarah) have both been friends with LeAnne for a long time, and were thrilled when Francis came into her life and swept her off her feet (we claim him as a dear friend, too). We cherish the Gibbs family immensely and, like many of you, have been humbled and inspired by the tremendous strength, courage, and grace with which they have faced this struggle, even through heartache and disappointment.
So as their community of friends and loved ones, we want to invite you to help us honor them. They say “a picture is worth a thousand words” and “the shortest pencil is longer than the longest memory.” If that is true, then documenting and preserving memories is one of the best things we can do!
To celebrate and encourage Francis and LeAnne during the difficult time, and to collect memories that Couper and Riley, future grandchildren, and generations to follow will be able to look back on and cherish, we are asking family, friends, colleagues, mentors, professors, fellow Gators, or anyone else who has some great memories of times spent with Francis to email them to email@example.com. These precious moments, funny stories, and cherished reflections will be put into various media that Francis, LeAnne, and their chidlren can enjoy as a family and that will be a wonderful legacy for our dear friend.
So dig out your yearbooks, go through old photos, rewind old VHS tapes, dust off old letters, pen heartfelt greetings, scrounge for old golf scorecards and ticket stubs from memorable Gator games, etc., and dive back into days past to share your warm, funny, and heartfelt memories. If there are stories that go along with the pictures, souvenirs, etc., please write them down. The more you can put the memories in context, the sweeter the recollections will be!
If there are things you have that cannot be converted to electronic form and emailed, please let us know by sending an email to the address provided above. We will figure out what to do from there.
Thank you so much for helping us bless the Gibbs family with the gift of your treaures!
Sarah and Mindelynn
“Love each other with genuine affection, and take delight in honoring each other.” (Romans 12:10, NLT)
The Gibbs family is now back home in Tallahassee. Here’s the latest information on how things have gone over the past two weeks.
The recovery in the hospital seemed to go pretty well, with a few minor exceptions. Francis will tell you that he thinks he was kicked out of the hospital a little too soon (just a week after surgery). I have to agree with him based on our experience with the smaller procedure in Jacksonville last May. Selfishly I am happy about the speedy release because I love having him home with all of us. All that aside, he’s done amazingly well at home for having undergone major abdominal surgery just a little over two weeks ago.
Toward the end of Francis’s hospitalization, there was a place along his incision that began showing signs of infection. The doctor decided that they should remove about six staples (he has two dozen, give or take) and allow the incision to reopen and heal from the inside-out. This open incision site must be packed with wet-to-dry dressing, twice per day.
As I mentioned before, a G-tube (gastrostomy tube) was placed in his stomach to replace the NG tube that was in his nose leading up to surgery. A painful reality of the G-tube is that the opening in the stomach and abdomen along the tube creates a path for stomach acid to seep out and contact unprotected skin.
This potential for leakage seems to be exacerbated by the fact that Francis continues to suffer from distention of his abdomen because of the cancer. We have to apply a cream to the site to try and protect his skin from the acid, and change the dressing at least twice per day depending on the irritation at the tube insertion site.
Francis is “fed” his TPN nutrition for 12 hours overnight. He has to have the IV bag of fluid mixed with fats, vitamins, and medication nightly. In addition, he must have the dressing on his PICC line and the caps on the lumens (see PICC line link) changed weekly. I had to get special education and a sign off from a special IV team nurse at MD Anderson to be able to manage this by myself at home. We also have a home healthcare pharmacy that is providing the TPN and weekly nursing support.
As I’m sure you can imagine, the news we got about the severity of the cancer and the heap of education we had to do in the weeks following has been overwhelming. We all craved the familiarity and comforts of home, while we feared the actual process of getting home. We were worried about the pain the change in pressure of an airplane ride would cause; we were also worried about the pain and discomfort caused by bumps and shakes of a road trip.
Ultimately, the call was up to Francis and he preferred the car to the plane. The pain caused by the pressure change from the flight to Houston wasn’t an experience he cared to repeat. We decided that following a check-up with Francis’s surgeon one week after his discharge we would start our journey back home in our car, assuming the surgeon gave us the green light.
The lovely rainy weather here in Tallahassee gave us an added logistical wrinkle – getting the rest of the family home by plane. The original plan was to have Francis’s dad and stepmom fly back to Houston on Tuesday morning, and his dad would accompany us on the drive back while Ann and my mom would travel by plane with our kids.
Unfortunately, the plane trip to Houston was delayed a day for weather. So, Francis and I decided that rather than delay the trip the extra day we should get on the road, just the two of us and have everyone else fly back by plane on Wednesday.
Francis and I arrived at MD Anderson for his follow up appointment on Tuesday morning. The surgeon told us that Francis was fine to return home, encouraging us to leave his staples in place for at least another week or two.
We returned home, I grabbed some lunch, and my mom and I packed the car to the gills with take-home nursing supplies and as much luggage from the trip as possible. We had to stop at MD Anderson’s pharmacy to pick up a few prescriptions before leaving town.
Francis and I began our drive together just before rush hour started on Tuesday afternoon. The ride was pretty uncomfortable for Francis and it had already been a long day of walking and examination. We made it to Baton Rouge, Louisiana, around 9:00 p.m. on Tuesday evening. We decided we would spend the night there and take our time getting back on the road the next day.
We departed Baton Rouge just after 11:00 a.m. on Wednesday and were fortunate to have a smooth trip along I-10, arriving in Tallahassee at 7:00 p.m. on Wednesday. That drive was much easier for Francis; he was even able to sleep comfortably for a couple of hours along the way. Since our return, we’ve all been recovering, getting back on Eastern time, and trying to get ourselves settled and organized.
Many people have been in touch with us now that we’re back home. We look forward to catching up with so many friends and family. Please bear with us as we work through Francis’s recovery from surgery and the new reality of our lives for the coming weeks and months. As I’ve said before, we are very appreciative of all of the messages, calls, etc.
As you may know, we didn’t get the news we were expecting from the surgery. The easiest way for me to explain is to walk you through our day on Wednesday.
Francis was rolled back for surgery at 8:00. We knew there would be prep for the actual procedure by a urology team and some additional IV lines placed by the anesthesia team that would happen after Francis was under but before the big cut.
I was told to expect an update from the nurse every two hours on the even hours of the day.
At 10:00 a.m., I got the first update from the nurse. She told me that the incision happened at 9:05, and that Francis was stable and his vital signs all looked great. I asked if they had decided to move forward with the procedure as planned, and she repeated just what she told me. So much for information.
I sat in the surgery waiting room working a 1000 piece jigsaw puzzle. Having 12-18 hours of waiting to burn, I figured I could make a significant dent in the puzzle during those hours. Francis’s dad and stepmom waited there with me, and planned to attend updates with me.
At a little after 11:00, the volunteer manning the waiting area approached me to let me know that the surgeon was here and would like to speak to me. I immediately felt like throwing up, and walked to the consultation room.
Dr. Keith Fournier was there in his white coat with his briefcase, I think my brain began to process that this was unusual before I truly realized what was happening. He told me that his part of the surgery was complete.
As I understand it, and we’ve since had it clarified, the surgeon was unable to do much of anything other than place a G-tube to replace the function of the NG tube for Francis.
He described that the cancer that was present when viewing the inside of Francis’s abdomen during the laproscopic procedure in December had grown and spread. Additionally, he informed us that the tumor was covering the mesentery, colon and lower third of Francis’s pelvis and the organs in that area.
Dr. Fournier explained that to remove all the organs and tissue associated with the tumor would have so severely impacted Francis’s quality of life that it wouldn’t have been worthwhile.
What we believed was an intestinal obstruction wasn’t exactly as it seemed either. Francis and I had wondered all long where the apparent blockage was located. When the original surgery happened at Mayo Clinic, we believed that the obstruction was addressed and wouldn’t be a problem again.
In a way, we were correct about the repaired obstruction. The mesentery holds blood vessels, lymph vessels, and nerves. The infiltration of the tumor through the mesentery was the cause of the “obstruction.” In fact, no part of the bowel was truly obstructed.
Dr. Fournier pointed out that upon watching the bowel during surgery you can actually observe intestinal peristalsis. In Francis’s case, too much of his intestines were affected by the tumor disruption through the mesentery. As a result, much of Francis’s intestines weren’t operating at all.
Ultimately, this is a devastating prognosis. Francis will be unable to consume food by mouth. He’ll be limited to a small amount of oral fluid consumption. He likely will be unable to pass stool or gas.
At this point, we understand that Francis will continue with the TPN (total parenteral nutrition) through a PICC line in this left bicep. Because Francis has limited intestinal function, chemo isn’t an option either.
So now, where does that leave us? Good question. These are some of the things we’re still trying to work out. What we do know is that to do nothing only gives us months of time together.
You have been so generous with your words of kindness, prayers, cards, texts, emails, and support. We will continue to request your prayers for us, Couper, Riley, and our families. I wish I were able to respond to each of you individually, but I’m sure you will understand that it may take me some time to do so. Either way, we remain grateful and completely humbled by such a tremendous outpouring of love.
We face some difficult conversations and painful decisions in the days and weeks ahead. As we begin to wrap our heads around what we must do and more immediately how we get Francis out of the hospital and back home, I will do my best to keep everyone up to speed through the blog. I appreciate your continued patience as we ease back into life with this new reality before us.
Family, friends, and those who are supporting and praying for us whom we’ve not had the pleasure to meet:
Francis is through the surgery and now recovering in his hospital room. We have gotten some unexpected news, and need some time to digest what we’ve been told and make some decisions.
The anesthesia will wear off over the next 12-18 hours, so I won’t really be able to discuss anything with Francis until that time.
I simply ask that you hold us in your thoughts and prayers as we process what we’ve been told today and start to work through the information and what it means for our family.
With warmest regards,
We got our surgery wake-up call this morning at about 5:30 a.m. (CST). I decided to stay overnight in Francis’s room so that I would be sure I was here when they took him down to prepare for surgery.
When the nurse notified us that “they” were on the way to get Francis, we changed out of our jammies and gathered up the rest of the loose belongings from Francis’s room. At about 6:00 a.m., we were headed to the surgical holding area.
The check-in nurses in the holding area informed us that the operating room was scheduled for 8:00 a.m. (Yay, more waiting!) The consent forms were checked, the anesthesia team arrived to start fluids and talk about their role, and we did our final hug and kiss.
At 7:50 a.m., Francis got some happy juice (valium) in his IV and they rolled him through the double doors.
We were told that the procedure would last until about midnight tonight (again, central time). I will post updates periodically throughout the day as I am given information by the nurses.
We can feel all the prayers and thoughts, and cherish each and every one. Stay tuned…
Medical staff with the air ambulance service and the EMTs with Leon County EMS arrived at Francis’s hospital room around 2:45 on Wednesday afternoon. At 3:15 p.m., Francis was sitting up all secured on a gurney in the airplane, the doors were closed and engines fired up. The weather we were flying into wasn’t the greatest, but overall we were expecting to be in the air for around 2.5 hours.
The one thing that was unknown was how the flight would make Francis feel. When your abdomen is distended with gas and fluid the pressure change from high altitude, even with a pressurized cabin, could cause some problems.
About an hour into the flight, Francis began to feel uncomfortable. He requested that the medical staff plug the NG tube, which wasn’t removed prior to the transport, into the suction on the plane. Another consideration of flying is that the suction on the airplane isn’t as strong as hospital suction.
With mediocre suction and the painful pressure from the altitude, we were anxious to have the flight finished. Unfortunately, the weather didn’t cooperate so well. We circled all the way around the airport to get the best path through the storm to the runway below.
After a rather bumpy ride, we landed safe and sound at William P. Hobby Airport around 4:30 p.m. local time. The ambulance met us plane side and we got on the road to MD Anderson.
Now, for those of you who haven’t driven around Houston, the traffic is horrible. Friends in the DC area can understand this well. A trip from the airport to MD Anderson could take 30 minutes or it could take two hours.
The weather and a stalled car in the middle of the highway weren’t going to help our return. The driver of the ambulance informed me that we would likely be to MD Anderson in two hours. Yikes!
As an aside, along the way on this cancer journey we’ve met a lot of interesting and inspiring people. The driver of the ambulance is one of them. He served in the Marine Corps and lived in the Washington, DC, metro region for a number of years. We bonded over bad traffic. He shared that he has a two-year-old son (just a few months younger than Couper). When his son was only six months old, they discovered that he had cancer. He was treated in Houston, and is cancer free today. I love hearing these stories!
Fortunately, our two hour drive was only 45 minutes. The trip from the ambulance bay through the maze of hospital hallways took nearly as long.
Francis settled into his hospital room at about 6:15 p.m. What followed was a well-oiled machine of hospital admission. In what felt like no time at all, Francis was in a gown, IV and fluids started, doctor in and out, and NG tube plugged into suction.
I escaped downstairs to the cafeteria and grabbed a bite to eat before returning to the hospital room to settle into my cot for the night.
That night I think Francis and I had the first night of restful sleep (despite the 5:00 a.m. check-in by the nurse) since this ordeal began 13 days earlier.
Since settling in here, Francis has been seen by his surgeon (Dr. Fournier), his dietitian, the surgical fellow for Dr. Fournier, and the plastic surgery fellow. Next week we’ll visit with more doctors who will be present for the surgery on Wednesday. Around here they refer to it as the “Mother of All Surgeries.” The more we hear from these doctors the more appropriate that title seems.
Everything is now falling into place as we look forward hopefully and anxiously to the big cut on Wednesday (2/13).
For those of you who have asked what we need and what our goals are, here are a few things. We both need rest because next week will be exhausting both physically and emotionally. We need attention to detail as the doctors and nurses begin to prepare us for the surgery and the recovery with an abundance of information. Francis needs to continue to build strength and health with the help of the TPN (total parenteral nutrition) and walks around the hospital.
I will be sure to keep everyone updated on Wednesday, and if anything new comes up in the meantime. I cannot thank you enough for your continued thoughts, prayers, and support.
We have big news! We’re headed to Houston today. Francis and I decided that the best thing we could do last Friday morning was go ahead and make the transfer to MD Anderson Cancer Center (MDA) in Houston, Texas.
Doctors and medical staff at Tallahassee Memorial Hospital (TMH) were putting pressure on Francis to have a new IV line placed, and we didn’t feel comfortable with the speed with which they were moving. Francis also wasn’t fond of being stuck, and especially when he was a little concerned with the potential of the sticking being redone once he arrives at MDA if they wanted it done differently.
Paperwork started being written and processed on Friday (2/1). We knew things weren’t likely to move quickly because Karen Beaty (Dr. Keith Fournier’s PA), informed us that MDA’s hospital was at capacity with patients needing beds. A transfer was unlikely before Saturday or Sunday.
If you aren’t familiar with the hospital transfer process, it goes something like this…
The doctor here contacted the surgeon there to confirm he was willing to accept Francis.
After doctors speak, the doctor here tells the caseworker here to process the transfer. The caseworker speaks to the hospital there, faxes them paperwork and faxes paperwork to the transfer center at TMH. (Seems like we could find something more efficient, not to mention clearer for reading purposes, than fax machines. Wait a minute…didn’t we invent something called the internet?)
Then, the transfer center at TMH connects with the transfer center at MDA. Once a bed becomes available, MDA lets the transfer center at TMH know and the nurses on our floor get the call to finalize details and get Francis prepped.
We waited through the weekend, and found out Monday morning that MDA only had capacity to take emergency cases through the weekend.
Francis doesn’t qualify as an emergency patient because he’s stable and his symptoms and side effects of the intestinal obstruction are fairly easily managed. This is something for which we’re very grateful, but thoroughly unhelpful in speeding up the transfer process.
I stayed in email contact with Karen through the weekend and early this week. She told us Monday evening that Dr. Fournier was in contact with the transfer center at MDA to try and have Francis moved there in a day or two. Today is day two.
Very shortly, we expect to be transported to Tallahassee Regional Airport for an air ambulance transport to MDA in Houston. We have to be there by 5:00 p.m. Central Time for Francis’s bed reservation.
We aren’t sure what the rest of the day holds for us once we arrive in Houston, but we know we’ll be one step closer to Francis’s healing.
Surgery happens one week from today, so stay tuned for updates as we prepare for a long day on February 13 and the recovery that follows.
If you’d like to send mail to Francis in Houston, you can send it to
1333 Old Spanish Trail, #3127
Houston, TX 77054