time in a vaccum

Once again I've let some of you down by failing to post regularly to the blog. All I can say is sorry. I've just been a little preoccupied. When in doubt, you can always call or text us...even Roger. Just be forewarned that we might be slow in returning calls/texts if 1) we're busy, or 2) Roger just doesn't have it in him to return the call.






Where we have been....where we are.....where we are headed...

This is going to be a slow, slow process. All of the progress Roger made in that first week after surgery seems like a distant dream.

On a daily basis Roger is hooked up to a liquid feeding to a feeding tube that sticks out of his side. It feeds directly into his small intestines. I have to flush the tube first and then attach the liquid food to him via a pump on an IV pole. The pump "feeds" Roger 60ml an hour of this smelly liquid nutrition. Prior to starting the feeding, I hook up an IV-feed of antibiotic to him which runs for 30+ minutes. He will stay on this antibiotic for another 1.5 weeks.

Gotta tell you. I never thought I'd be doing this in a million years...and the initial prospect was pretty daunting. Once you kinda settle in, the scary feeling goes away and it kinda just becomes part of your "new normal". The other part of the new normal (and quite foreign for ME!) is doing more laundry. In an attempt of keeping as "sterile" of an environment immediately next to Roger's skin - I've been changing sheets every day or every other day. I'm trying to restrict the set of towels for the feeding and IV and then wash them every day.

During the day, he is eating and drinking by mouth - but in small doses. Because the size of his stomach is smaller and his system is not "used" to eating, he can only tolerate a couple teaspoons of food at a time. If he eats too much he has considerable discomfort and then is reluctant to eat any more the balance of the day. Its a fine line we are walking....he needs to eat and drink on his own by mouth to ever get to the point of not having the feeding tube. Naturally he doesn't want to eat in the morning after coming off the feeding tube all night...its a balancing act.

Roger is still very weak. Down about 28 pounds. His muscle mass is virtually gone. Every day he is supposed to do leg and arm exercises. He does those but is being very conservative. You see, Roger is very very afraid of doing anything that might cause another leak in his system. He is terrified that he might experience that horrific pain again. In fact everything he does or doesn't do right now is tied to that fear. He will not push his breathing exercises - will not try to take it to the next level (despite what the respiratory therapist said) - he is being very very conservative. Its odd for me to see him this way. Roger is one of the most fearless people I know AND one of the most laid back people I know. He is neither right now.

Physically he is making slow -but steady- improvement. He still has a long way to go. The whole process, as you can imagine, is starting to take an emotional toll on him. He has been pretty down and blue. Completely out of character, he has not wanted to talk with anyone. He's just in this funk. After coming home from the hospital, his disposition improved slightly but has gone down. I think he had this huge moment of fear - no matter how good a caregiver I am - that being at home away from the hospital, means that he is 15 minutes away from a nurse or doctor if there was an emergency verses a nurse just down the hall if we were at the hospital. With each passing day, he seems to "settle in" a little more and the fear seems to SLIGHTLY abate with each day.

We had the longest stretch of sleep yet last night - 5 whole hours in a row!!!! I think we both may feel like superheros today as a result. I'm sure just by typing this, I have jinxed us to a night of little sleep tonight.

We go back to the infectious disease doctor's office this week (we go every week). We'll pick up more antibiotic supplies and will get a check up for him. We don't meet with the surgeon until the end of the month. Do we ever get to escape this health care merry go round?? Stop the ride we want to get off....

At the end of the month, I am supposed to start working at the new company. After this long journey, I could use another couple weeks "off'. At the risk of sounding melodramatic, I feel like we've been in the midst of this grueling war since December 14. It just continually pounded away at you. We had hopes of going to Florida for part of the recovery period during January while I was off, but the doctors won't release Roger until the end of the month. I may have to postpone my start until I can recharge my batteries (and Roger's) a little.

I know the world doesn't stop when someone gets sick. Life goes on and all that. For me though, the world has slowed a little....not stopped....so that we can get Roger through it. And I'm ok with it.

I'm anxious to get Roger "back". He has a one of a kind personality that you feel the void of pretty immensely. I'm anxious for him to regain his confidence. Like I said, I'm anxious to get him back.


much love to all. I hope to have some Roger moments to share with you soon.

These pictures were taken on Tuesday before we left to come home. The picture of Roger's belly shows the different bandages. The one in the center of his chest covers an incision about 7 inches long. The bandages on his sides cover chest tubes and the feeding tube. All the black and blue bruises on his stomach are from heparin shots he had to have twice a day in his belly to thin his blood to help prevent blood clots. Between those shots and the blood sugar tests twice a day, Roger was starting to feel like a pin cushion. Its a good thing that we escaped the hospital when we did!

As you can see from the pictures, Roger has lost a lot of weight. In person, you can really see the weight loss in his face and his upper body. His poor skinny bird legs are even skinnier. Its going to be a slow process getting him back to square one especially since getting him to eat more than a bite or two is challenging.

I was able to hook Roger up to the feeding tube pump with no mishaps (HUGE considering our bad luck!). Its quiet the event as you have to clean and flush the tube sticking out of his belly, then hook up the bag with the feeding substance, prime the tubing and then hook to Roger, and turn on the machine. Meanwhile hoping to not spill a dip of this smelly stuff on Roger or on any of the furniture. And it is really smelly stuff.

This morning we had to go to the infectious disease clinic to get an IV-antibiotic treatment, pick up our home supplies, and for me to learn from the nurse how to hook up the antibiotics to Roger's semi-permanent IV picc line. Talk about intimidating....several steps to remember with cleanliness/hygiene being of greatest importance because these lines go straight into Roger's blood stream. We have a week's worth of antibiotics - heavy duty high-powered stuff. The antibiotics are to continue to fight any infection from the stomach bile and to prevent any future infection.

I never would have imagined that we would have been through as much as we have. Likewise, I never would have imagined that I would be hooking Roger up to feeding tubes, IVs, etc. Life takes you in interesting directions.

Last night was a night of broken sleep in increments of a couple hours at a time. Lots of arranging and rearranging of pillows and bedding. I anticipate there will be more of that tonight. Roger is very uncomfortable and spends a good portion of his time awake trying to find the magic, ever illusive "comfortable position". Hopefully with each passing day, some of the discomfort will abate.

The newness of being home should wear off by tomorrow. I hope that a little bit of a "normal" routine will settle in... I hope that the unsettled feeling goes away.

~ Angie

Home Sweet Home

As Dorothy says in the Wizard of Oz....there's no place like home, there's no place like home, there's no place like home. We didn't have to wear ruby slippers, nor did we have to click our heals three times but we did have to make a rather long journey to get back here. Its wonderfully quiet here in the house. The house smells of us...of home...not of antiseptic or "hospitally" smell. Its sooo good to be home.

I will upload some pictures tomorrow of Roger as he was getting ready to leave the hospital. It was such a big day.

The doctor took out the staples from Roger's stomach incision - 30 some odd staples. Because they were in so long, he had minimal pain and the incision was well healed. One less thing to worry about. Roger will actually be able to fully shower and not just have a sponge bath. We'll have to wrap his arm in plastic to keep his pic line (semi permanent IV for antibiotics) sterile. Every step gets Roger closer to "normal" and closer to independence.

Our nurse, Wendy at the hospital ran us through a series of discharge procedures including cleaning Roger's feeding tube line and changing dressings. We said our farewells to the fabulous nurses who have been tenderly caring for Roger and made our way home.

The house was a bit chilled from the furnace being out. So Roger stayed bundled up for about 45 minutes while the furnace heated away, along with a space heater, and a couple burners on the stove. He hung out on the main floor in his recliner for several hours and then late afternoon went up to bed to nap.

The visiting nurse FINALLY showed up around 7pm to run me through the paces of how to set up the feeding tube pump. I am glad I only had/have this one meeting with her....she didn't exactly encourage great waves of confidence from me towards her. Fortunately, there are instructions and manuals that go with each piece of equipment. Its a little intimidating initially but you just brush it off and plow a head. You do what you've got to do.

For fear of missing some long over due sleep, I'm going to stop posting now. Roger is once again snoozing next to me. This time we are both nestled into our bed together. No hospital bed for Roger. No cot for me.

Our world seems a little more settled for the moment. Tomorrow promises to be a new day - I'm sure full of a lot of new and unknown.

Feel free to text Roger. He's going to be slow on wanting to actually talk as he is still processing what he has been through. The memory of when the leak happened is still all too real.

More tomorrow. Lv, Roger & Angie

No one sleeps in a hospital

Its only 8:30 and I feel like we have already put in a day and a half's worth of effort. Our wake up call came at 6:15 when a transporter came to take Roger to a chest xray (step one to getting us out of the hospital). Sadly this little wake up call - complete with all the overhead lights flipped on and one very loud, way-too-exuberant transport person - came not long after I finally went to sleep. Oh well that's life in a hospital....how sad that we are becoming experts at "life in a hospital". Since I was awake, I went ahead and "packed the room". I took off the linens from my not-so-comfy cot and folded the old rickety-thing up. I figure if I put out this aura of "we're getting out of here", maybe it will stick. As you can imagine, I'm a little skeptical in light of our continued murphy's-law-type luck.



Waiting for the furnace guy to call me to tell me he has/hasn't located the broken part on the furnace. Meanwhile I sit here and wonder if the house is frozen. I drained all the pipes, shut off the water main, and flipped on every light in the house (lights give off a LITTLE warmth). When I left the temperature was 63 degrees inside the house. The temperature outside....a toasty 8 degrees. I'm hopeful the temp didn't drop too much. Fortunately the cats have fur coats to keep them warm with loads of blankets spread out on chairs etc to keep them warm.



So, its confirmed we are going home TODAY!!!! Orders are being written. Staples are going to be pulled from Roger's stomach incision. Visiting nurse has been scheduled. Appt has been set for us to go to infectious disease office tomorrow to get schooled on antibiotic feeds and so on and so on. It sounds like it will be quite the ordeal to get us out of here with checks and double checks and lessons and instructions, etc. but nonetheless we are breaking out of here!!!! Its really sweet as the word has spread among the nurses, they have been stopping to tell Roger how great he looks and to wish him well. Once again we feel like we're leaving a new family like we did when we were at the Oncology Center. The upside of any of this aside from getting Roger cured, is meeting a lot of wonderful people along the way.



That's it for now. I look forward to posting again tonight from the comfort of our TOASTY WARM home. ~ Angie

Two down and one to go...

Today is a monumental day...they took out the second chest tube...two down!! Roger only has the feeding tube (one to go) left and a semi-permanent (long term) IV line. We are so many steps closer to going home. The doctor said today that we should - depending on how Roger's chest xray looks - get to go home TOMORROW. Huge HUGE HUGE. (I'm really excited, if you can't tell)



The tube feedings are turned off during the day to stimulate Roger's appetite. And slowly but surely the appetite is coming back. I mentioned much earlier during this blog that during chemo/radiation, Roger's appetite virtually stopped; when he did eat...it was the ever nutritious FAST FOOD DIET that appealed to him. I'll pause for a moment while I let you guess what his food request was for this first meal request off the feeding tube.......

......

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...... you win if you guessed Kentucky Fried Chicken....ugh. He didn't eat much, only a couple bites of chicken and a bite of mashed potatoes, but it was a start (even if not the most healthy). Today he wanted to try soft tacos from Taco Bell. Oh well, eating is eating, right? I won't win any prizes for getting good nutrition into him at this point. If we can get enough hydration/nutrition in him by mouth then we'll get the feeding tube out sooner. For the near future, I'll hook Roger up to the feeding machine pump every evening and flush his feeding tube a couple times a day. A visiting nurse will come to the house a couple times when we first get home to work with me but I don't anticipate any problems. I've been watching this for so long here at the hospital, I can practically do it in my sleep as it stands. I will also change the remaining dressings.



One of the additional benefits to Roger not being hooked to the feeding machine during the day is that its one less tube/device that he has to carry around with him. Basically now during the day, he has to be hooked up to an IV pump twice during the day for antibiotics (about 30 minutes each time)...but that's it. So, for a period during the day he is "free as a bird" to move about without having to lug around his shadow, the IV tower. Closer to our new normal. Closer to getting the hell out of here.



We've had a couple Roger moments. A recent one: Roger's bones and muscles are stiff, tight, and just worn out. In particular, his legs, low back and butt. Think about it. Being in bed this long, makes sense to have aches and pains. I've been giving him massages and physical therapy to help with his legs/back but couldn't get to his bootie because he was always sitting or laying on it. So, to be accommodating Roger rolled over onto his hands and knees with his forehead down on the bed. I started to laugh with the thought that a nurse or Dr. Freeman might walk in with Roger's ass up in the air and me squeezing his cheeks. Fortunately he decided that the pain from this position was too great and rolled over before a nurse walked in. We had a reverse of this yesterday when I leaned down to him in bed to give him a hug. My butt was swinging in the breeze towards the door. Fortunately no one walked in. We make a fine pair with our butts in the air. Guess its a good thing we're not overly modest. We have a reputation with all the nurses. I think they enjoy our sense of humor and certainly our love for one another. They genuinely seem to enjoy caring for Roger.



No more posts tonight. I need to run home and get things for Roger to wear out of the hospital tomorrow. Once I get back, we'll watch a movie. Then he'll take a sleeping pill and then it will be a race to see which one of us falls asleep first. I give him a run for his money on that.



Gotta tell you it almost seems like a dream....from where we started...to where we were over a week ago....to where we are today. Completely surreal. There were moments when it would have been so easy to let go and be swallowed by fear and worry - to utterly be suffocated by it. At the door steps of those moments, it took stern conversations with myself that it would serve no good to anyone most especially for Roger for me to be fearful or worry. I looked at each of our doctors and told them that I was putting my faith in them - told them that they needed to communicate openly and honestly with me and give me as much information as possible. And in return, I would not melt down, would not succomb to the fear - essentially I would not worry until they told me I needed to worry. And each of them held up their part of the bargain.



As if life weren't challenging enough, my employment situation has changed. Its another layer of complexity in our life... The team on which I have been working at CTMT has moved to a new firm, Jones Lang Lasalle. It was a quick decision and pretty much happened while we were in our bubble here at St. Vincents hospital. I won't start at the new firm until the end of the month so that I can be with Roger throughout his recovery. It means a temporary stopping of income which of course I'd prefer to NOT have....but it is more important to me to be with Roger than to worry about the money.


So, I started this post considerably earlier. It is now midnight and I have just returned to the room. I left around 7:30 to go home and get a change of clothes for Roger to leave the hospital tomorrow. Here's the newest funny of the day...related to why I'm just now getting back (and missing two hours of Roger sleep time!)...I got home to a chilly house....the furnace wasn't working. Weeeeeeeee! Isn't this fun??? I was able to get a service guy to come to the house at 11 to tell me that I need a piece (which he, of course, did not have with him) that only costs $1,000. Weeeeeee! Isn't this fun???

Ok, someone out there can turn off the "fun switch" . I have offically had all the fun I can stand.

Going to sleep to hopefully dream away this part of the night mare. G'nite. ~a

Sleep is a good thing

Its a small thing, I know but we actually racked up a whole 4-5 hours STRAIGHT of sleep. Wow!! It was awesome. Roger did wake a couple times choking/coughing. I was able to raise the head of his bed quickly enough that he really didn't wake out of the sleep. There was only one instance of arranging/rearranging the bed. You see, he sleeps with about 8-9 pillows in the hospital bed...trying to find that optimum position that feels good (or the least amount of pain) while also taking pressure off his backside. Its been a nightly dance...often repeated several times during the night. Not set to music other than the rustle of sheets, fluffing of vinyl covered pillows (ick!!), and the tick of Roger's various IV machines. Though it can be a little frustrating to move a pillow 5 inches and then end up moving it back to the same position only 30 minutes later, you can't blame him. He's been in a hospital bed for 21 days which is a veritable lifetime.



We started the day at 7 this morning as the nurse came in to put Roger through the morning paces. I think he could have kept sleeping but ended up getting up. We went for a walk down the hall and back. He is now off having a chest xray. The xray should show how much fluid is/isn't in his chest and also confirm there is no other leak. This should be good for Roger to hear. He has been extremely apprehensive about the possibility of another potential leak. Again, who can blame him. He vividly remember the pain from the first leak.

Roger's IV tower is significantly less encumbered. There are fewer and fewer tubes and wires...with each one being removed, we know that Roger should feel a little better. He has been using his pain medicine less and less. The removal of the first chest tube helped immensely. I'm sure the removal of the second tube will bring him even closer to "normal". He said he doesn't really notice the feeding tube...which is a good thing. I think that will stay with him for another 2-3 weeks. Likewise, the staples in his incision on his stomach will stay until a week or two after we leave the hospital.

We have had visits by two of our favorite ICU nurses - Holly and Arika. They stopped by at the end/beginning of their shifts to check in on Roger's progress. Both were very pleased to seem him up and about and full of color. His personality is still slowly emerging from the frozen tundra of narcotics and hospital fog - but he still joked with us a little. It was such a small thing to stop by and visit but had a profound impact on us. Roger has been more than just a room number with a patient.

The plan for today: more walks, physical and occupational therapy exercises, lots of boring TV. I'll be leaving mid afternoon to meet my family at our house to take down our Christmas tree. I'll squeeze in a couple loads of laundry and a shower (Roger and the nurses will appreciate that!) A couple hours away from the hospital helps keep ME from having hallucinations and being a little whacked.

This little adventure over the last 21 days has led to our own version of America's Biggest Loser weight loss program. Roger is down approximately 22 pounds and I'm down about 15 pounds. Its par for the course. I anticipate that he'll probably drop another 5-10 pounds though we certainly are going to work to avoid that....and put more weight on him! We may be revisiting the high protein shakes/smoothies that he had during chemo.

Things are good...much better each day. He is getting a little more affectionate and tender as he has started to feel better. The sweetest moments for me have been when he reached out to hold my hand in the middle of the night (I push my cot up next to the side of his bed), and then just a few minutes ago when he asked me to crawl into bed with him so that he could snuggle up next to me.

:-) Angie

Another short post

All and all it was a good day. The fog continues to lift from Roger's brain and more of his hilarious, albeit obnoxious personality slowly returns. He is getting stronger...though he still has a long long way to go. Since entering the hospital he has lost approximately 20 pounds ~ so much of that muscle strength.

One of Roger's two chest tubes was removed today. We hope that the second tube will be removed on Monday....and if all goes well, that Roger will be released and we will go HOME on Tuesday!!!!

Dr. Freeman has been enthusiastic about Roger's recovery. He has removed any food restrictions - so if Roger is up for it, he can try to eat anything. Problem is that he doesn't want to eat anything. The liquid food administered via his feeding tube has a foul smell to it that lingers around him and, he claims he can taste. So any food makes Roger gag. He has been able to drink liquids with no difficulty. We're going to try stopping the feeding tube feedings during the day in hopes of stimulating Roger's appetite and then turn the feeding tube back on at night. Tomorrow will be the first day. The goal is to get him eating and drinking before leaving the hospital with the feeding tube as a back up....just in case.

It has been a long long difficult journey for Roger...for us. He has had moments of depression and emotion. He is sooo happy to be alive. His happiness is naturally mixed with some fear of another "episode" happening so he is reluctant to push any of his physical and respiratory therapy. Having said that, he IS doing his exercises just not pushing it.

So, I'm keeping the post short tonight (and didn't post last night) because Roger has been given a sleeping pill (and was last night). We both got 3 almost 4 hours straight of sleep. Tonight I am hoping for the same or more....he has just drifted to sleep which means I need to sleep now or possibly miss the window of opportunity.

More to share with you tomorrow. The road to recovery is a long one filled with lots of turns and twists that we never would have expected.

~a