Tuesday, January 30, 2007

And boredom begins to set in..

I have been out of the hospital almost a week, and I must be feeling better becuase I am starting to get bored. Life in the Kelly hotel has a rhythm, nice and predictable; however, I feel like the couch might become attached to my bottom, i have spent so many hours sitting on it, but alas here I sit even now. This morning, I set a record by actually getting out of bed before 9 am, to make it to an 8:45 doctors appointment. The good news is that lefty is healing well. The plastic surgeons came to look at my wound and they are happy with the progress although it still has a long way to go. We negotiated our way to an agreed upon start date for radiation, which should hopefully, allow for me to start working on range of motion stuff first. Now we just have to find the right place for me to go in LA to get my foot zapped. However, my doctor still doesn't quite seem to get my sense of humor because she looked at me like I crazy when I asked if I could start using my crutches more to get some exercise. Oh well, I guess I have more couch time coming. I will just have to be happy with the progress that I am making and conitnue my wheelchair exercise.

Friday, January 26, 2007

Hello Lefty- it is nice of you to register

Out of the hospital for 3 days and apparently, I have a social schedule. Thursday, my friend Kim took the train down from Ct. where she is visiting her family for a week. She was treated to the site of me in a wheelchair upon arrival to our hotel and then forced into duty helping me with my first solo dressing change. We carefully went through the whole procedure and studied my foot along the way; however, I was nervous that I would do anything wrong, so we went slowly and methodically. She and her friend, Leeanne, then took me out for a walk. It was so great to be outside and fortunately not too cold yesterday. We wrapped lefty in my mom's red scraf to keep it warm, but it really seemed to signal oversized load- note foot sticking out. See below.

Here we are on Park Ave

Other than that life in the Kelly hotel room has found a rhythm. We have played many games of Gin Rummy which are often filled with great laughter as my dad hums the Battle Hymn of Republic much to my mom's and my dismay. We have also doven into a puzzle, the whole thing reminds me of many a New Years Eve at my Aunt and Uncle's cabin in Lake Arrowhead when we used to challenge ourselved to ever more difficult puzzles while hoping to have snow fall so we could play try to kill ourselves on the tobaggon and then we would play huge games of Oh Hell. But I digress. All of these pursuits are passing time nicely. Plus, I have been lucky to have many visitors to help take some pressure off of my parents and break up the time. Yesterday, Tricia, today LT (formely LW). It is funny how much I focussed on 5 days of bed confinement, and yet it never really dawned on me that after bed rest would come--- more immobility. I am still supposed to keep my foot elevated at all times, and I really am pretty much relegated to the wheelchair for locomotion. Oh well, it was minus 3 outside yesterday with the windchill, I don't think I missed mush.

My mom and dad hard at work on the puzzle

In more exciting news yesterday, I was changing my dressing with more attention to my foot than the day before, when all of a sudden I touched my heel while applying the quaze and I FELT IT. Somehow, it registerred to me, OH, MY GOD, I CAN FEEL MYSELF TOUCHING MY FOOT. I exclaimed with great joy to my mom. I can feel my heel and then I suddenly broke into uncontrollable sobs. I knew that the doctor said she had been able to spare the nerves, but she had to completely strip them all of their covering, and really I hven't felt my heel normally sinse my last surgery so I had very low expectations for sensation to my heel. But somehow, that slow registering of the fact that I could feel my heel just overtook me. I know that it will be a long road back, but this - this is a major relief. SO, lefty thanks for registering with my brain.

Wednesday, January 24, 2007

Out of the Hospital

Last night when I was falling asleep, I was nervous about the unveling of the foot and what if something had gone wrong etc., ect. My mind was doing its refusal to shut down routine. However, with the help of my night pain meds, I finally got some sleep.

This morning, I woke up like a kid on Christmas, filled with anticipation and anxious to see lefty again. The plastic surgeons showed up around 7:30 and removed the vacuum version 2 and the unveiling proceeded without a hitch. Everyone says that the graft looks successful and that it should heal in well. That is good, because right now it still looks like I have a hole in my foot. However, I am sure that it will heal beautifully. So, the official word was given at 7:45 am, I could leave. I couldn't hurry everyone along enough and finally at 2 pm we were ready to leave. My friend, Tricia, showed up at the hospital to drive us to the hotel (a whole 6 blocks, but we are from California and we had a lot of stuff, and I can't walk) and we loaded me, my parents, a wheelchair, crutches, my stuff, flowers, balloons etc. into Tricia's car and drove the 1/2 mile to the hotel where the whole procedure was repeated. I loved feeling the crisp air when we were out briefly and coming into the hotel room that doesn't smell like hospital. Yeah, for surviving 5 days of bedrest. Yeah, for surviving 13 days and 12 nights in the hospital. Yeah, for my family and friends who have kept me sane through it all.

Me and my friend Vas, who flew down from Pittsburgh to be with us the first week on the day she left.

Tuesday, January 23, 2007

Tomorrow I leave the hospital

Twelve days ago, I arrived at this hospital and prepared myself for my surgery. I knew there was a possibility that I would stay for as long as two weeks, but I never really thought it would be so long. Now here we are getting ready to leave on hospital day 13, Wednesday. Today, bedrest day 4, we started making arrangements to leave. The wheelchair arrived in my room, I chose the crutches over the walker, we arranged for a commode for the hotel, and it hit me- Oh my God, I need a WHEELCHAIR, CRUTCHES, AND A COMMODE JUST TO STAY IN A HOTEL ROOM. Hello, is this a cruel joke? However, sadly this is all true. I have done my exercises and I will do them as instructed (and prove that doctors can be good patients), but I have been in a bed for 4 days which is a feat I never thought that I would accomplish, so I know that I will do what it takes to get back on my feet as quick as possible.

Back to twelve days in the hospital… I have always known that the nurses are the front line. At work, I fully realize that while I may be in charge of the team it is the nurses, residents, fellows etc. that carry out the plan. Seeing it from the perspective of a patient is interesting. Here has been my schedule. I am awoken every morning by the ortho team (fellow, resident and NP), around 7 am we discuss how the night went etc. then they leave to be followed by the plastics team. All this before 8 am, then for the rest of the day I interact with the nurses, nurses aides, Physical therapy, nutrition people etc. who take care of many an unspeakable activity of daily living. Then sometime in the evening, my doctor comes by and we talk about the big picture. Then the night comes and the whole thing repeats itself. My questions have all been answered and my needs met and another day begins greeted by my night nurses who bring me my left over yogurt at 6am so my pain meds don’t make me sick. That has been my schedule for the last 12 days. So, while I know I am very thankful for the care of my doctor, she I will be in contact for the next couple of years, but I want to publically (or at least in the blogger world) thank my nurses, Pt, etc. who have been so great and have made these last two weeks bearable. …. Tom, Peggy, Dana, Elli, Jill, Vicki, Rita, Veronica and Estelle- Thank you so much. Tomorrow I get out of here!!!!

Sunday, January 21, 2007

Even St. Paul Says My Body Has to Support Lefty…

It may seem a little strange to many that I have started to think of my extremities as independent personalities banding together in the battle for lefty. Maybe it is the pain meds, or maybe it is spending hours in a hospital bed thinking about issues related to your left foot. Then maybe it is hours doing physical therapy designed to strengthen your arms and remaining leg so that they can take over for lefty, while doing separate exercises on the lefty so that it has some strength when you get to start using it, well I guess you see my point.

My dad came back from church today with proof that I am not the first to think this way. The reading at mass was a letter from St. Paul to the Corinthians (probably another letter that the Corinthians didn’t answer*) describing how the individual parts of the body have each a separate purpose and that they combine together to become more than they could be individually. As St. Paul says, “If a foot should say, ‘Because I am not a hand I do not belong to the body,’ it does not for this reason belong any less to the body. ….God placed the parts, each one of them, in the body as he intended. If they were all one part, where would the body be? But as it is, there are many parts, and yet one body. The eye cannot say to the hand ‘I do not need you.’ Nor the head to the (left) foot, ’I do not need you.’ …..If one part suffers, all the parts suffer with it; if one part is honored, all parts share its joy.” So, there you have it even St. Paul in one of his unanswered letters claims that the rest of my body has to bond together to support lefty(St. Paul also had a deeper meaning).

*My dad, courtesy of cousin Bob, has this joke about some guy arriving at the pearly gates and asking to see St. Paul. Which surprises St. Peter as most people ask to meet others higher on the totem pole, but this guy wants to meet St. Paul. When they finally locate him and bring him to the pearly gates, the guy asks St. Paul only one question, “did the Corinthians ever answer any of your letters”?

Saturday, January 20, 2007

Confinement to Bed: Day 1

Lefty now has skin coverage courtesy of a generous gift from my thigh. Unfortunately, the thigh seems to have gotten the short end of the stick because it is what really hurts right now as the doctor predicted. So, I have officially been on pure bed rest for almost 24 hours, and it is no fun. There is nothing like seeing what you want, but it is just out of your reach so you have to push the little call button and wait for someone to come and get it for you, to really drive a highly independent person completely crazy. However, it is made easier by the fact that yesterday my doctor somehow convinced bed reservation to give me a private room. So, we all (meaning me, lefty and the other extremities who all seem to have become personalities in this tale) enjoyed a good night sleep without listening to a roommate’s snoring, talking, TV watching, inability to turn out the light or any number of other non sleep conducive things that I am sure I did to them also.

Let me tell you a little something about life from “behind the curtain” at a big cancer hospital. For the past week, I have sat on one side of the curtain dividing the room with my friends and family as we talked, laughed, cried, prayed etc, while there was another family living out parallel experiences on the other side of the curtain. You try not to eavesdrop to respect each other’s privacy, but there is just no way as the rooms are too small. The experience has left me with the following thought: if you ever think that the deck of cards you are being dealt stinks, then spend a week on the “otherside of the curtain” on the neuro/ortho ward at a cancer hospital to realize that you don’t have it so bad after all. I wish all of my hospital roommates and their families health and peace as they continue their journeys.

Back to the OR

First the good news the pathology on the new resection was negative, meaning they didn’t see any more tumor and the margins were free of cancer. So, hopefully, after radiation this whole thing will be behind me. I feel like a million prayers have been answered and the process of recovery seems somehow much easier with this news in mind. Still don’t get me wrong crutches stink, but it is much easier to focus on the whole recovery thing not thinking what if there is more that they have to take. So, on to the long road to being back on my feet. Lefty, you are going to have to earn your wages as a full member of my extremities.

The first step is to have a plastic surgeon cover the large hole in my foot ( the one covered by the vacuum wrap) with skin from my thigh. So, back to the operating room I go tomorrow to cover lefty back up. Then I will get to spend 5 days in bed. Yes, in bed only, no chair privileges, no bathroom privileges, no privileges at all except I will be able to sit up in bed. Oh so fun for me. Once again, my parents will be back on blog duty. So long for now. Wish me well tomorrow.

Comments by Dad;

It is now Sat. morning and we have talked that the hotel we moved into on Wed that we deserve free internet so no more Starbucks, bad news for the Starbucks shareholders. Lefty's 7AM OR appointment yesterday took place at 5PM. Everything went well and when she returned to the hospital room for her five days in bed she had been moved to a private room which should be a big help. We will her bring back the computer for her more extensive update later today.

Wednesday, January 17, 2007

8 minutes and 50 seconds

Thanks to V-L for keeping everyone updated the past few days. The job has now fallen to my parents, although I am trying to write this to see if they can just post it. If you’re reading this then the experiment is working and pictures might even follow.


Last night, I saw lefty again for the first time unbandaged. Late in the afternoon my doctor showed up with her minions and declared it time for the change of the cryovac thing. They kindly warned me that it would hurt and that she had to move slowly so as not to injure anything under the wound. Proceed as slowly as you need to I thought, not damaging the artery is a good thing. They then loaded me up on dilaudid (high power pain killer) and proceeded to slowly open up the vacuum dressing. I found it fascinating to see all that stuff right there and looked on as though looking at someone else’s foot. Like I said there was a lot of dilaudid involved. After that they applied a new dressing, then new black spongy material and covered it with the vacuum stuff and attached the vacuum thing again. Now for those who have any clue about what it looks like to use a FoodSaver vaccum system, especially when done on carefully prepared Thanksgiving dinner rolls, can somewhat imagine how it looks when a 4 inch thick sponge all of sudden shrinks down to about ½ an inch with the application of vacuum. That is what happened to my foot, totally surreal, especially through the drug induced haze. So now my foot is safely vacuumed again and back in the boot contraption and ready for primetime- well almost on the last one.

This morning the peppy PT lady came by and lead me on a walk around the ward of the hospital and go over my exercises. Yesterday we only made it about half way, but today was the day to go the whole way. I made it exhausted by the end, but made it all the same. She then also suggested that I could make another lap in the aafternoon. So, if anyone knows anything about my competitive nature you can imagine that of course I took the second walk, walker and all and I even timed myself- hey what else if a highly competitive type A person supposed to do when confined to a bed for all but a few minutes a day. So, it took 8 min and 50 seconds for me to make a lap around my ward, a lap that should take less then a minute, but hey I did it twice in a day. So, heres to that.

The waiting game of the moment is for the pathology from the surgery. Once we have that we’ll be able to finalize the next phase of the plans and start to have some clue about when I can come home. Thank you so much to everyone for their support. Hopefully, we’ll know something in the next day or two.

The new substitute blogger, Ray or dad, doing this in Starbucks to gain internet access was not able to post this prewritten blog in 8 Minutes and 50 seconds.

Sunday, January 14, 2007

Dr. Jeckle and Ms. Hyde

If you have ever been in the hospital, you know that it is not a quiet place, a restful place or a place of serenity. Ms. Lisa has been a great patient so far. She is sweet to the nurses and follows all of her doctors instructions. After being kept up all night by the visitors of her roommate, and not nearly a high enough dose of pain killers, Dr. Jeckle began to emerge. Lisa went nearly three hours without pain killers, when she hit her innnercom button and asked for her pain killer due from the pharmacy, STAT! (Apparently patients may say that too!) As she said, she channeled her inner b***h, and Dr. Lisa, with a patient who was suffering came out with a firm conviction. It is like the old saying goes, you need to have an advocate when you are in the hospital, sometimes its your doctor...and in Lisa's case, she's got Dr. Jeckle.

Needless to say, Lisa got a good night sleep and her pain went from a 20 to a 3, yeah! She was able to sit up today for a while and is doing some cool push ups while sitting in the chair. Lisa is finnaly up to movie watching tonight, so things are starting to feel a little more normal. Keep Ms. Hyde and Lefty in your prayers as she should be getting her pathology reports back in a few days, and if everything is clear, they will close up her foot.

Saturday, January 13, 2007

Lisa conquers Central Park and surgery all in one day!

Wow! We did it.

First of all, if you are reading this, Lisa is out of surgery and the surrogate bloggers (Mom Cindy and Friend Vas) have managed to get into Lisa's computer.

Aliright,"Lefty" did it!! After cajoling my poor friend Vas into going for a long walk throughout Central Part, we got cleaned up and went off to the hospital. We played cards while waiting for them to call me back. Then off to the O.R. while "Lefty" got the comupence (sp) for any pain that she ever caused me. Then at the end of it all, they put my foot in to a vacuum contraption and now we have to wait for the pathology reports to come back in order for surgery #3 to close up the wound. Now there is alot of waiting for the pain to go away. All of the doctors are very optimistic. -Lisa

While Ms. Left foot won't be dancing for a while, Mom has learned the "New York Dance": scarf on, coat on, gloves on. Go to destination, then reverse procedure: gloves off, coat off, scarff off. Repeat 25 times per day and your are exhauseted if you are a California whimp.-Cindy

If you have a glass of wine, a beer or even a tall cold glass of milk near by (for all of the expectant mothers reading now) I ask you to raise your glass or nearest sippy cup and toast to Lisa and her left foot. They have both been challenged over the last twenty four hours with surgery, pain and medications, but Lisa is already sitting in a chair for the first time. She still needs lots of rest, but Lisa has her spunk back already...no messing around, but we all expected that. She is a trooper! -Vas

P.S. Please excuse any spelling errors and editing changes....the guest bloggers may have taken some creative license.

Thursday, January 11, 2007

Tomorrow, tomorrow, tomorrow.....

My friend, Vas arrived at our apartment today and we spent the day exploring more. I seem to have this aversion right now to staying inside. I started to get antsy about 2 hours after I woke up this morning and we wandered the city for hours this afternoon. It is almost as though I think that I can store time outside to draw from in the next few weeks and months when I have to progress again through the stages of learning to walk. The current estimate is that I will likely be in the hospital for up to 2 weeks especially if they have to cryovac my foot. Fortunately, for me, my surgery isn't until noon tomorrow. So, I have plans to take advantage of one last short walk to the park before we head up the hospital. One last deposit in the bank of outdoor time before my isolation.

So, lefty tomorrow is the day, you better behave and if they have to cryovac you then you had better come out the other end ready to do your job.... Got it!!!

Wednesday, January 10, 2007

NYC Day 2

Yesterday I had my day of doctors appointments and preadmission testing. Definately not fun especially on 4 hours of sleep. Note- rant coming- We arrived into JFK Monday night around midnight after a perfectly enjoyable smooth flight on which we were even treated to a relatively new movie- Queen, which brought back quite a few memories for me. Anyway, once off the plane it seems that the BAGGAGE HANDLERS ELECTED TO JUST NOT UNLOAD OUR BAGS FOR OVER AN HOUR. I mean really no excuses, no explanations we all just waited until 1 am when they finally deined to get us our luggage so that we could be on our merry way. On the plus side, we made it from JFK to midtown in 30 minutes at that time of night.

Alright, thanks for letting me get that off of my chest. The appointments of the day went smoothly enough and the concept of preadmission testing was actually quite efficient. Doctors orders for today were to walk as much as possible as I am not going to be walking for quite awhile. Today, my poor mother got subjected to elder abuse as we headed out to walk around Central Park in the cold wind. Really, it isn't that cold for New York in January, but we are Californians. It was a beautiful walk and enjoyed the fresh air and sun on my back. I even enjoyed feeling my foot hurt as it got tired from walking. My dear mom was a very good sport with the whole thing. Actually we had fun and my mom still likes me. Tonight we are off to the theater.

Monday, January 8, 2007

Departure Day

Today is departure day. My mom and are sitting in the airport waiting for our flight. Everything is packed and the List is complete aside from 1 item that I declared inessential. Hopefully, my dog won't run out of food, if she does she isn't going to be in the middle of a desert without food around her and really the animal almost never eats when she is away and my neice and nephew give her treats all the time so she won't starve. I hope.

I woke up early this morning for some reason and took Sadie for a short walk. I figured it will be awhile before I'll be able to walk the hills of my neighborhood. It was refreshing. I can't quite believe that I am goign to New York for treatment, but after all that has gone on I feel more comfortable. My uncle found us an apartment of some friends of theirs that we are going to stay in on Park Ave. I have never stayed on Park Ave in my life but it should be fun. I plan to walk throught Central Park for the next 3 days until I can't walk again.

Well here we go off on this adventure. Thank you to all for your well wishes. I will be trying to keep the blog up to date through my agents.

Saturday, January 6, 2007

Ode to My Christmas Tree

So, the To Do List is going along nicely. Sadie is taken care of, thanks to my brother and his family. We have a place to stay in New York, and the Christmas decorations are down. Things are progressing along as the countdown continues, Tminus 7 days now, 3 to departure). Taking down my Christmas tree always makes me melancholy. I love having this light filled tree in my house. This year, however, it is a sweet reminder of good friends. Like I said before good friends find many ways to help.

So, here's my ode to my CHristmas tree- Back in the early days of learning that the tumor they removed from my foot was indeed not a benign Schwanoma, but something far worse, I told only a few people. I wasn't ready to talk about it and I couldn't deal with people knowing as a way of protecting myself. The first person that I told was a friend from work. The next day he was listening to me talk about all of this. Back then I was raw and talked in stream of conscience even more then usual. Anyways, the conversation drifted from fear about my future to how can I decorate my house for Christmas ( I was still on crutches then, too). He stopped me there and offered to get me my Christmas tree. Sure enough that Saturday he and his partner showed up at my house with one of the best Christmas trees I've ever had. They put it in the stand, made it straight, put lights on it and put ornaments on the top part of the tree leaving the rest for me to do. Now a note about the putting on of lights- a- they determined I didn't have enough lights and went out to get more for me- b- they put on the lights simultaneously in two separate patterns. One vertically in swaths of sort, the other circleing (sp) the tree. Whatever the method the tree was beautiful. We laughed at the time that taking down the tree would be hard, but really they were right it did need more lights. I have sat in front of it many nights over the past month and thought about them and appreciated their gift to me. It was a time consuming, thougtful gift that I have treasured.

Today the tree had to come down and a different friend is coming over to get it back out of my house. So, we laughed about getting the lights off the tree when they were going up, but let me tell you there really was no pattern to these lights. I am the kind of person who carefully takes my lights off of the tree and puts them back in the box they came in. One of my very few anal things, but this year, I gave in and took the lights off and let them fall to the ground encircling the tree to be untangled (and yes back in their boxes, later). My living room seems somehow empty now, but it is one more big thing done on the List. A special thanks to Robert, Joel and Chris. Now on to packing....

Friday, January 5, 2007

T-minus 8 days

So, I realized that I forgot to post the important news on this blog. So, here goes, my surgery is scheduled for Jan 12 at Sloan Kettering in New York. So, I am now in serious countdown mode.

My mom and I are leaving for New York on Monday, Jan 8, and will be there a couple of days before the surgery to do the preop stuff, get settled etc. Oh yeah, and we are going to see Wicked- my one fun New York adventure. I fugure that I can't be in New York for almost a month and not see at least 1 play. I have been deep into planning mode for this journey the last 5 days. I keep making lists and checking things off of it. Un fortunately, every accomplished item seems to remind me of several more that I need to do. Currently the TO DO list is at 4 pages with about 2 pages worth of stuff done. Last Wednesday I finally finished all of my disability forms (well the first round at least) which was quite a saga and left me with the thought. What would I have done if I had to go immediately into the hospital. How on earth would I have been to gather all of the pages and pages of documenting infomration. I think that insurance companies purposely make those forms close to incomprehensible so that people will give up and not fill them out. Anyway, I digress. Hopeuflly, the rest of the things are easier to accomplish, but I am not so sure. We had at least accomplished the really important things like- finding a place to stay (although that now seems confused- thank you so much to all the people who have offered. I'll be in New YOrk a lot the next year or so, so I may take you up yet.) and finding someone to watch my house and my crazy neighbors. I am still working on finalizing a place for Sadie to stay etc. Like I said it is a long list, but fortunately, I have time and help getting it done. Alright, enough wasted time typing this stuff time to start checking off more things on the list.

Thursday, January 4, 2007

ND 14 LSU 41

About the only thing that I like about this score is the symmetry of it. I mean really, I had to stretch to come up with something positive to say. Don't the darn Irish know that I climbed to the 87th row of the LA COliseum on crutches to watch that debacle against SC. Then they came out with this pathetic performace. It can be so tiring to be an ND fan, although we anticipated this against LSU- I had hoped we would at least make a game out of it, for about the first half I thought that might be possible.

Better luck next year

Tuesday, January 2, 2007

Happy New Year

Happy New Year to all who happen to read this blog of mine.

I have decided that this year I am not making any resolutionss except to live each day to the fullest and appreciate all the good things in my life and the world around me (if it sounds vague that is the point).

However, my second thought was that when I turned 30, I made a list of things I wanted to accomplish before turning 40. Now some of the things on the list weren't solo projects but some were. and I am doing pretty well at accomplishing them. I started off 2006 by fulfilling 2 dreams on that list on my trip to Belize. I got certified in scuba diving which I loved, plus doing it in Belize was great becuase all of my dives were on the beautiful reefs off of the Kaye. The weather wasn't perfect, but I loved it. I climbed a Mayan temple, and got to take in the incredible view from the top which included howler mondeys fighting. There are many other accomplishments of 2006, some personal, some professional, but I think my lasting legacy of this past year which has been repeated over and over again is that when you ask people who are real friends to help they do. I feel so fortunate to have so many great people in my life and I wish all of you a wonderful 2007.

Take Care L