Monthly Archives: January, 2013

The call we’ve been waiting for

I took a bit of time away from the hospital this afternoon to grab lunch, collect my thoughts, and run an errand.  While driving alone in the car with no sound other than the wind rushing by (a rare thing with 2 kids), I began to reflect on the way the experiences of the last 9 months and the last week have impacted me.  There is an update in here, so skip to the bottom if you just want the update.

I’ve always been afraid of heights, at least as far back as I can remember.

As a kid, I used to love the good, old-fashioned swings that have since been removed from most playgrounds for safety reasons.  I loved pumping my legs until it felt like my head was soaring above the crossbar of the swing set.

At this point, my fear of heights would kick in.  When all of my friends would swing forward again and sail through the air to the ground I would continue to be securely on my swing’s seat, gripping the chains with white-knuckled fear while the brief free fall commenced.

All of us who have ever flown this high on a swing know that when you get that high the chains slacken and for a moment you feel as if you’re falling, not swinging.  Then the chains snap tight at the bottom of the fall and swing you back the other directions.

For some reason, having that snap happen while swinging backward when you can’t see what’s ahead is far more terrifying than the jolt when swinging forward.

This is really what this whole cancer experience has been like for me: terrifying when we can’t see what is ahead, manageable when we can.

Last winter and early spring we were swinging along high in the air, excited about what we saw on the horizon.  New baby on the way.  New house we purchased and into which we were settling nicely.

Then Francis is diagnosed with an aggressive type of colon cancer that we later learn is Stage IV.  That horrible backward floating happened for a long time while we learned to navigate surgery, recovery, chemo, chemo side effects, etc.

Then the reassuring snap of the swing catches us and we’re safely headed back to a point where we can see what lies ahead when we learn about an exciting treatment known as cytoreduction and HIPEC.

We feel freed to build dreams, plan vacations, think about where we’ll be 5, 20, 40 years.  We’re flying forward again to the height of the swing set’s crossbar.  Little did we know we were nearing the top of that climb.

Then Thursday night and Friday brought that terrifying backward freefall again.  The terrifying moment when we didn’t know the seriousness of the situation in which Francis found himself.  Not knowing whether the chains would actually fail to catch our weight this time.

But today, the chains caught us.  Karen (Dr. Fournier’s PA) called our doctors who arrived in our room with her on their cell phone speaker.  She told us all that Dr. Fournier was comfortable with the program of treatment currently outlined.

Francis will remain on TPN, a nutrition fluid given through an IV that is the equivalent of approximately 2100 calories.  The NG tube will remain in place to remove excess fluid from his stomach and keep his intestines resting.  We will continue to hope and pray that his blockage diminishes or disappears as a result of the rest so that he may go home.

Finally and perhaps most importantly when we feel completely out of control, we’ve been given full control over whether we go to Houston now or whether we wait.  They’ll take us if and when we say we’re coming or just as planned in February.

As far as we all know, the major surgery that is scheduled for February 13 will be done as planned and if the blockage remains it will be addressed at that time.

Again, thanks to all for your thoughts and prayers.  I will continue to update the blog if there are any changes or new developments.

 

 

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Patience with a side order of progress

This will be a short post because, unfortunately, I don’t have a lot to report.

For whatever reason, the CD of Francis’s CT scan didn’t make it to Dr. Fournier in Houston until last evening after everyone was gone for the day.  It was a long day of anxiety filled waiting with nothing to show when the day came to a close.

At this point, the CD should be in the hands of Dr. Fournier and/or his medical staff.  It may have been reviewed, but we still await word of the decision.  Frustrating, but we trust that we’ll get news today.

In the meantime, Francis’s bowels decided to move today.  We don’t know what this means and we don’t know if we should expect progress in this area to continue, but we choose to believe that this is a good sign and are hoping for the best.

I will post with a more detailed update once we have more details.  Until then, thank you for your prayers, thoughts, concern, care, notes, texts, and emails.  We couldn’t do this without each and every one of our family and friends!

Playing the waiting game

Sorry for the delayed post.  I know everyone is antsy for an update, so here you go…

First and foremost, there has been no change in condition for Francis or the blockage.  Francis was able to rest a lot yesterday thanks to some medication for the hiccups.  He’s been awake and up today, even sitting in the chair some.  He even felt like washing up, so we spent time carefully working around his new hardware to get cleaned up today.

Yesterday I spoke of frustration trying to get the two bureaucracies talking.  It appears that they have made initial strides toward a transfer if that’s the best option at this point.  With the foundation in place, the paperwork processing will hopefully move much faster if the decision is made to transfer.

Dr. Hasan Mohiuddin, one of the doctors on the team here in Tallahassee, also spoke with Dr. Fournier at MD Anderson yesterday afternoon.  Dr. Fournier expressed his desire to see the CD personally.  As a result, Dr. Mohiuddin ordered radiology to work up the CD and have it returned to the nurses’ station on Francis’s wing of the hospital if it couldn’t overnighted directly.

The charge nurse let me know the CD was there. She had been bugged by me working with me all day, but not without a lot of pushing and prodding on my part.  When it came to the CD, I saw that I had finally won her over.  She called and yelled at radiology about how ridiculous it was that they couldn’t send the CD overnight themselves.  Radiology was less than helpful and I was able to bond with the charge nurse in our disappointment with their helpfulness.

I personally took the CD to the FedEx store.  At least I know it was done right and I had the tracking information.  It arrived in Houston at 10:30 this morning, but we’re still awaiting word from them.

The wait is excruciating at this point.  The doctors on the team here are wanting to start nutrition, while we’ve been told by others that Dr. Fournier doesn’t want them to do that or anything until he sees the scan.

We just saw the attending physician.  I wish I could report that she had a lot of news, but she knows about as much as we do at this point.  She explained that they want to start Francis on TPN (total parenteral nutrition) by IV today.  He’ll get that tonight at 8:00.

Since he hasn’t eaten since Thursday, this will be much needed nutrition and hopefully will help his energy level improve.

The biggest thing we need right now is some direction from MD Anderson and direction with enough working time in the day here to move the bureaucratic wheels as needed.

When we were here before the move to Mayo Clinic, Jacksonville, we faced the frustrating experience of trying to get a transfer done before everyone leaves for the day.  The case workers leave at 4:00, so we have a hard deadline with that and we’re also an hour ahead of Houston.  This is causing a great deal of anxiety for both of us.

Here’s the updated list of specific needs if you’re keeping track…

1.) Blockage to disappear or diminish – still no change here.

2.) Pain controlled and Francis comfortable – still well managed.

3.) Hiccups go away and stay away – thanks to medication as needed we’re able to address this.  So far today without medication, he’s only had a 2 or 3 at a time a couple of times an hour.

4.) Rest for Francis – again, the hiccup medication was immensely helpful on this.  Planning to nap this afternoon, barring too many interruptions.  Naps also helps pass the time.

5.) Wisdom and cooperation for the doctors and medical staff – much improved in this area over where things were this weekend and yesterday morning.  Never helps to keep improving this area, though.

6.) Grease the bureaucratic wheels – we may need this one, big time, in the near future.

7.) Patience for both of us – I now realize this list isn’t necessarily in the order of importance because this would definitely be up there at the top today.  If I could, I would physically shuttle between Dr. Fournier in Houston and Dr. Mohiuddin here.  I could really use a teleporter if anyone has a spare one in a closet somewhere.

Latest job title: cancer concierge

It seems that just like before, we ended up at Tallahassee Memorial Hospital (TMH), when we didn’t want to be here, over a weekend when we couldn’t reach anyone who could help us get somewhere else.

We would like to be at MD Anderson Cancer Center for treatment rather than TMH.  Because Francis has such a rare and unusual type of cancer, we seem to be spending more time giving information about Francis’s cancer to the doctors rather than getting much information from them about his status.

It isn’t very comforting when you don’t know what to do for Francis and the doctors don’t know enough to quit telling us that the edema in his intestines is from the Crohn’s disease.  Let me be clear.  It isn’t Crohn’s, and it’s more likely thickening of the bowels from tumors rather than edema.  But what do I know, I’m just the wife.

Back to the update…first and foremost, Francis is comfortable.  He’s even snoring right now.  I want to block the door so no one interrupts this much needed rest.

We have a couple of things in the works at the moment.  Now that it’s Monday, I’ve spent a LOT of time on the phone and email.

I’ve talked to Karen, the PA for Francis’s surgeon at MD Anderson, Dr. Keith Fournier.  Karen is awesome, awesome, awesome.  I knew these people existed in the medical community because there are several in our family.  They must be akin to finding four-leaf clovers.  Thankfully, Karen is one of those elusive four-leaf clovers and she happens to take my calls and emails.  Woohoo!

Karen is in the loop and will speak with Dr. Fournier about what is going on with Francis.  She is also having me overnight a CD of the CT Scan done on Francis yesterday afternoon.  She wants Dr. Fournier to personally see the scan so he can compare it to the scan done on our first trip to MD Anderson in early December.  Then we can operate with as much information as possible.

Second, we’ve been working with a helpful resident who is willing to facilitate a transfer to MD Anderson if and when they say they’ll accept Francis.  She’s gotten all the phone numbers and contact information for the surgical team in Houston, and came in at 7:00 this morning to let us know she would be working on that when she left the room this morning.

Yesterday I mentioned some specific hopes and goals.  Here is where we stand with those and a few new ones:

1.) Blockage to disappear or diminish – no known change.  Keep the prayers coming on this one.

2.) Pain is controlled and Francis is comfortable – so far so good.  Last night was a better night.  Hopeful this continues.

3.) Hiccups go away and stay away – not staying away, but not as frequent or as prolonged when he does have them.  They continue to be irritating and just now interrupted his sleep.  Can’t block the door on that one.

4.) Rest for Francis – limited interruptions would help, but it seems like there’s a conspiracy to interrupt just as he’s gotten to sleep.  Hoping for a quiet afternoon when it comes to medical team arrivals and departures in his room.

5.) Safe travels for my mom – she made it safe and sound and Couper and Riley are currently mid-spoiling.  Thanks to Tom for picking up and safely delivering my mom to our home from the airport.

6.) Wisdom and cooperation for the doctors and medical staff as they treat Francis – a work in progress.  I should have added patience for us as we answer the same questions or correct the same details over and over again.

7.) Grease for the bureaucratic wheels – NEW.  Seems like it takes a long time for TMH to talk with whomever we request they consult with on the case/transfer/etc. Hoping that calls to doctors, CD creation and sending, calls to transfer office all get through on the first try and are resolved in a speedy fashion.

8.) Patience for both of us – NEW.  Should have mentioned this already as well.  We hate waiting (as I’m sure many of you do), so when that’s the only option we have at the moment we don’t take it too well.  Thank goodness for TV, online crossword puzzles, and nap opportunities, but what we really want is progress of some sort on the part of the hospitals and medical teams in both locations and marked steps toward healing for Francis.

No one says cancer is easy

Here’s an update to the post from yesterday.  Today is much more rough.  Francis took a turn for the worse overnight.  Read on for the details.

Yesterday Francis had a pretty good day.  All the worry about the reinsertion of the NG tube yesterday morning was unnecessary.  Upon removal, we discovered that the tube was kinked, so repositioning would have been worthless.

Francis was very combative after the removal, and I was a little worried he may throw the nurse in Incredible Hulk fashion if she tried to reinsert the tube right away, so we asked for a break and some Ativan.

When the nurse returned from asking the doctor for the Ativan, she said the doctor told her to hold off reinsertion as long as there was no nausea and Francis was comfortable.  Woohoo!

After that news, Francis slept most of the day.  By mid-afternoon he was awake and alert, and we actually walked a lap around the floor a couple times.

Francis suggested I go home and have dinner and spend the evening with Couper and Riley and relieve Melissa, our babysitter.  I left him comfortable, in good spirits, and settling in for a nap.

I spoke with Francis briefly, and he had the chance to talk to Couper on the phone around 7:00 PM.  We got interrupted by a nurse, so I told him I’d call him after I got the kids in bed.

When I called Francis around 8:30 or 9:00, I woke him up.  Bad wife!  To make matters worse, there wasn’t anything to report.

At 12:30 AM, Francis texted to let me know they were reinserting the NG tube.  He told me he was bloated and that they made the decision to address that promptly.

I slept as fast as I could and got up at 5:30 so I could be in his room when the doctors made rounds this morning.

Francis is pretty uncomfortable and very tired.  Between increasing pain and intermittent hiccup attacks that are plaguing him, he’s been unable to rest most of the night.  He’s had some bouts of nausea, but the doctor ordered more anti-nausea medication which seems to be working.

The doctor is going to discuss Francis’s case with the radiologist and surgeon to determine what the best course of action should be.  He also told me that he would likely need to contact information for our team at MD Anderson so he could reach them directly to consult with them and discuss treatment here or a possible transfer to Houston for further treatment.

My mom is flying down to Tallahassee this evening.  So we’re getting more reinforcements, not to diminish the continued support from family and friends.  We have great family and friends who continue to encourage, comfort, love us and most importantly love our children when we need to be here at the hospital and focused on Francis’s healing.

This brings me to the hopes and goals for today: 1.) Blockage disappears or diminishes, 2.) Pain is controlled and Francis can stay comfortable, 3.) Hiccups go away and stay away, 4.) Sleep for Francis, 5.) Safe travels for my mom, 6.) Wisdom and cooperation for the doctors and medical staff as they begin to craft a new treatment plan for today.

Experiencing our greatest fear…

When I last posted I mentioned that the worst part of waiting for the surgery on the 13th of February was how far away it seemed.  With a cancer we can’t fully know or understand, time isn’t our greatest friend.  One of the things we fear most we are now facing.

Francis began experiencing abdominal pain late Wednesday and into Thursday.  He was having difficulty sleeping on Thursday night and moved to the couch around 2 AM Friday morning to make sure his tossing and turning wouldn’t keep me awake.  He returned to bed around 5 AM, but the pain gradually increased throughout the day.

At 3:00 yesterday afternoon, we contacted MD Anderson and the PA for Francis’s surgeon.  She advised us to go to the emergency room because the symptoms we were describing sounded like an obstruction in his intestines.

So here we go again.  After another frustrating Friday evening in the ER at Tallahassee Memorial Hospital, Francis is now in a room and resting beside me.

He’s receiving pain medication and fluids by IV.  They had to place an NG tube last night to drain his stomach.  That is a horrible medical device, and in our opinion just shy of torture.

We were informed by his nurse that after an X-ray this morning his NG tube wasn’t well placed.  Rather than just adjusting it, they had to remove it completely and plan to reinsert it here in a little bit.  We’re REALLY unhappy about this!  We’re hoping there is something they can give him to calm him down/sedate him a bit before doing the reinsertion.

Here are the things we need: prayers for this obstruction to go away on its own without the need for surgery, wisdom and patience for the doctors and medical staff here (our confidence in them is important, and it’s badly damaged from previous experience), clarity for us to know when to get more answers and take more time before making any decisions and when to know that the guidance we’re getting is accurate, and ultimately that we can still do the surgery as planned in Houston in a couple of weeks.

When a month feels like both a whole year and only a minute

After a nice hiatus from planning over the holidays, we are in full preparation mode for a family deployment of sorts.  Francis originally was scheduled for surgery in Houston on February 15, which meant we would likely need to be in Houston by February 13.  Just last week, the physician’s assistant for Dr. Keith Fournier, Francis’s surgeon, called to ask if we could move the procedure up to earlier that week.

So, the procedure is now scheduled for February 13.  Did we get upset/stressed/worried?  Goodness, no!  (Thank you, Pete the Cat.  If you’re not familiar, listen here. A great lesson about going with the flow.)  I’m doing my best to try not to get too stressed out about any of this – not easy.  Realistically I’m a miserable failure, but I’m not giving up yet!

We plan to leave Tallahassee on February 9 or 10 and drive part of the way to Houston before finishing up the drive in time to be there for Francis to have blood work done at some point on the 11th.

I’ll go through the big logistical items about which we’re most frequently asked.

HOUSING: We’ve entered into a short-term lease in an apartment building near the Houston Medical Center that caters to medical stays.  They have a three-bedroom, furnished unit that will be “home” for Couper, Riley, and me when Francis is at the hospital and all of us just before the surgery and the week or so following discharge from the hospital before we’re cleared to journey back home.

CHILDCARE: Thanks to the continued support of both of our families and friends, we’re covered here once again.  My mom will be flying to Houston to stay as long as we need her, although we’re all hoping it’s shorter than we’re planning.  If she needs to get back to work after several weeks with us, we have many more family members and several friends who have also offered to help us with Couper and Riley.

CATS: I’ve mentioned before how great our babysitter is.  ‘elissa, in Couper speak (Melissa), has become a very important part of our family.  She’s smart, warm, kind, energetic, loving, and a wonderful young woman who we’re sure makes her parents very proud.  She has agreed to stay at our house while we’re gone and take care of our two cats.  We’re thrilled to have someone we trust taking care of them and also keeping the house “lived in” while we aren’t here.

MAIL: Having moved twice in a nine month period, we’ve discovered that mail forwarding isn’t a perfect system.  I still wonder how much mail didn’t get to us and marvel at how much mail we have gotten for the previous tenant of our apartment and now owner of our home.  That said, we’ve decided to have Melissa fill a FedEx box with our mail and send it to us periodically.  I trust Melissa and FedEx more than the U.S. Postal Service who lost $15.9 billion during the last fiscal year, but I digress.

While February seems to be quickly approaching in terms of preparing a family of four to move for approximately two months and every day I wish we had a bit more time to prepare, when it comes to getting rid of Francis’s cancer it feels like an eternity.  So, we need plans to continue to fall into place quickly and Francis’s cancer to pause its progress or disappear on its own between now and February 13.

I think that about covers where we are right now.  We continue to be excited, hopeful, anxious, and terrified about what lies ahead.  We thank you for your continued support, concern, and prayers.

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