Email v Phone Calls

People often complain about the impersonalness of email, but there certainly is something nice and convenient about being able to carefully script your thoughts on your own time and send them off into the netherworld of the internet and then get a response scripted on the timeline of the recipient. It is unobtrusive and efficient. Phone conversations are better for active dialogue and information exchange, but it requires two people to be available at the same time and that is so hard.

I know a little bit of a departure from my usual thoughts, but this one has been plaguing (sp) me of late as the numb foot thing keeps getting worse. Yesterday, poor Lefty was devoid of feeling after walking just under a mile. At this rate, I might wind up back on the couch and that would so not work for me. Anyway, my favorite ortho onc doc wanted to talk to me after I saw the radiation doc and the foot and ankle ortho to discuss this further. However, she doesn't believe in email with patients. I get it, but the result is that my cell phone is connected to my person at all hours because invariably she will call during the two minutes that I leave my cell phone. On the other hand the foot and ankle guy is happily emailing me (and her) to try to figure out which nerve is bothered and why this keeps happening. So much more efficient. Right now I just want an answer and a plan because I am sick of this. Help!!

Promises kept

I swore I would never dress my dog. I even gave Kim permission to take Sadie away if she were ever found in clothes.  However, my mom has a ceramic duck that she dresses for the holidays, and Sadie was quite curious about the whole thing. She seemed to have costume envy. I persisted in my desire to keep her clothes free, but of course, my mom encouraged my poor dogs feeling of undressed inequality. See evidence below.


Merry Christmas to all

Time

I sat in my office last night forcing myself to get through writing copious notes about my little charges and playing games with myself to get through it- so many notes before getting another pecan praline thing etc, and I started musing about time. It felt like just last week when I had last been tortured by the mundane reality of the writing of these notes, but in fact it was the Sunday after Thanksgiving, before I went to DC, before the dumb numb foot thing escalated, before so many other things that now seem remote because they are now a part of my daily reality. Then I started thinking about how I will be back to work truly full time as of Jan 2 when I am on service for the first time in over a year. That was when it got truly curious because if I have issues sorting out the passage of time over the past month, forget the past year. I barely remember last Christmas, yet the one the year before is still clear in my mind. I went to New York just after Christmas last year and while I did my best to put away all of my decorations before going when I returned to my house in March there were still tell tale bows and Christmas candles throughout my house. Alas those things were still there when I packed everything up for the great remodel further pushing the issue of time and how we mark its passing. We think of time as one of the truly objective things in this world. We mark the time and date of important events so that we can remember them. We, or at least I, live by my watch so that I can keep to a schedule. However, once it becomes the past our mind plays tricks with the now elusive memory of time and that once truly ordered, objective time somehow gets marked subjectively and ranked based on importance. Funny how that happens. Curious how the fact that I got no sleep last night has lead to these observations. Oh well, time goes on.

Almost 8 months- follow up

Apparently breaking my fast food fast was worth it I found out today that I passed my test, and I have still managed to make forward progress with my diet.

Happy Birthday To Me v2

I am another year older today and maybe another year wiser. That is a serious maybe, but I certainly learned a lot this past year. Today I also learned that a great way to chase away any birthday blues is as follows: Get your hair cut the night before so that your hair stylist has done your hair, wear a sweater the color of your eyes and pants the color of your hair. In that way you wind with at least 10 people telling you before 9 am that you look fabulous. Serious ego boost. Thanks all.

Also it is my blogiversary as I started this blog one year ago yesterday as a means of keeping everyone updated. Last year my birthday post was my second post ever and it had a little different feel, but today I am happy about it being my birthday.

Almost 8 months

Really it has been 7 months and three weeks, since.....

The last time I ate fast food (the only exception were some fries the day I had my facial cyst biopsied). I know the date exactly because it was the day that my friend Kim gave birth to her baby, Brady. She had asked me to be there and I dutifully headed straight to the hospital where she was in labor after my daily foot fry; however, I was starving and by then I knew that getting really hungry wasn't good, so I stopped at Carls Jr for my all time favorite fast food hamburger- the Western Bacon Cheeseburger. I have loved it since I was a kid and it is the only fast food meal I have ever craved. Well that day, while the wonderful baby, Brady was born was the first time that I got really nauseous from my radiation. I know that the xray beams shot at my body were the cause but it became linked in my mind to fast food and thus for months after that fast food (even driving past a McDonalds or Carls Jr) made me sick to my stomach. Thus began my new found obsession with eating healthy. It started because protein smoothies were about the only thing I could stomach for the last week or so of radiation, but it has extended into a lifestyle change. I no longer remember the last time that I bought regular white rice in lieu of brown, or regular pasta instead of whole wheat. I eat organic when I can, and have at least one salad a day. I aim to eat lots of fresh veggies etc.

Alas, I digress, today I found myself with 20 minutes before I had to show up to take my pediatric recertification boards, 10 minutes of drivng to get there and at least 5 minutes to park etc and I needed to eat and lo and behold in front of me was a Carls Jr. I couldn't figure out how else to eat and I was hungry after swimming 2000 yards. I gave in and ordered the same Western bacon Cheeseburger, no fries. I ate the whole thing and it was good. I took my test, I hope I passed. I am disappointed at giving in on my resolve to avoid fast food for at least a year; however, while it was good it wasn't great and I am still quite sure that I will never again crave fast food.

So be it, I made it from April 22 to December 12 without any fast food and I think that was pretty darn good.

I wish I were an Ostrich

I wish I were an ostrich so I could bury my head in the sand.


I wish I were on a boat floating down the Nile so I could be in that state of bliss called “denial.” (sorry I couldn't find a good picture)

I might even settle to be Sadie and be so happy that I am back from my trip that sleep is the only way to contain the joy.


Alas, I still am me, and Lefty is seriously foiling my plans now. I always sort of knew that my foot going numb was a bad sign and when it started happening on my walks while I was in DC, I knew it really wasn’t good. Yet still the amazing power of the human mind to happily float down that river in Egypt is astounding and while I am a smart person and a doctor I can still happily stick my head in the sand until it is forced back out, as it was by my doctor when we finally talked on Monday. Apparently, the numb foot is bad and made even worse by the fact that my ankle is also getting weak now when it’s is numb- uck. She is worried that this represents something called postradiation exertional compartment syndrome, which apparently means that my ankle and foot want to swell from the radiation and are doing so, but it is so scarred down from all of the surgeries and radiation that it can’t swell. Therefore, when I do things that should make Lefty swell there is nowhere for the fluid to go so it builds up pressure causing compression of the nerves, veins etc. leading to a numb foot. I have to have some more tests to prove this theory, but it fits all of the symptoms and it makes sense. It is going to take awhile to get everything done, but in the meantime I have to take it easier. Rats- Plus if this is what is wrong and it is happening this soon after radiation (apparently 7 months is soon- as it is supposed to get worse for 2-3 years postradiation) then likely I’ll need surgery to release the pressure. Double ick (I have a lot else I’d like to say, but double ick will have to be the profanity of choice for now)

Harrrrumph

The Day My Life Changed

Alright folks, we aren't quite done with the "one year later" posts- sorry. I have thought a lot about whether to write this or not, but occassionally someone newly diagnosed finds my blog and emails me complaining that the story ends before the beginning, so I thought I'd try this.

One year ago today I heard terrible words while sitting by myself in a doctors office. Actually, I didn't so much "hear" them as "read" them, because I demanded to see the pathology report myself and there were a lot of crazy sounding things, but at the end was the term sarcoma and nothing good ends with sarcoma. I knew nothing about the specific form of sarcoma they were diagnosing me with (some crazy version of chondrosarcoma), but I remembered all to well taking care of kids with sarcomas in residency and it was always bad. To say that I was scared might actually be the understatement of the century. I was numb, shocked, horrified. I heard about the possibility of amputation for the first time that day, and it just wouldn't process. I didn't know what to feel I didn't know what to say or how to act and I kept thinking this can't happen to me I have to work tonight. Fortunately, my orthopedist declared- Lisa you can't work tonight, I forbid it. Otherwise, I might have tried.

I had arranged to take my parents to lunch that day to thank them for helping me through my post surgical recovery (who knew how much more of that they would do). Anyway, as I was spending more and more time in the ortho's office I called my dad and asked them to wait for me that I had to talk to them. I called my best friend on the way to the restaurant, then I crutched my way to their table, my dad stood up, he hugged me, I started to cry, I couldn't speak, I couldn't move, my world was changed, I knew it even then. I finally got it out and then my mom started to cry. I don't think that she stopped for a week. A year later, I might hope that that will be the worst moment of my life. At the time it felt like a nightmare. I spent the rest of the day in a fog, talking to people who were slowly hearing the news, trying to deal, but I was a wreck. By the next day, I had focus again. I needed knowledge. I needed to understand what was wrong. I needed help. So, I went to work, I did literature searches. I called my friend at MSKCC and started the road towards going there. I pushed emotion aside and I just did what had to be done.

I have often thought of that transformation that I underwent in the night after I learned I had cancer, I changed from scared and powerless to purposeful and in charge after a few hours of pretending to sleep. In that day, I learned how strong I am, and I learned a lot about what makes me tick. I know that I couldn't have done it any different. I am me, and this story is how I dealt. I would never question how others might deal with similar issues and likewise I don't want to be questioned. I did what I had to do. I did it with the help of my family and friends. I remain so grateful to those who helped and saved my sanity along the way, but alas this was my road to travel and I did it as best as I could.

Numb Foot

I have become obsessed with exercise of late. I make sure to work out at least 5 days a week and more often 6. It is a mixture of cardio and resistance training plus my PT, which I now no longer have to do for a month. I have lost over 25 pounds since I was allowed to start exercising back in June and I am proud of my progress. An aside here- for the first time ever in my life losing weight is now treated with suspicion. When I saw my doctor in October and they saw the then 20 pound weight loss, I was questioned quite seriously about whether or not it was on purpose and did I really think that it was proportional to how much I was exercising. This line of questioning has been repeated many more times of late- Nice. Anyway, back to our regularly scheduled post. So, as of late October I was allowed to start bumping up my cardio and start running and doing more and more on the elliptical and guess what. I am now being foiled by Lefty as he without fail goes completely numb after about 15 minutes. This has prompted another series of calls to my team as affectionately think of them- the PT, ortho onc, and foot and ankle ortho guy. Yikes. So far there is no consensus except to stop what I am doing once my foot goes numb. Harrrummph

One Holiday at a Time

Every year it seems that the shopping world tries to start the Christmas season earlier and earlier. You used to hear retail people complain when Thanksgiving was late in November because it meant that there were fewer shopping days before Christmas. This Thanksgiving is as early as it can possibly be, but now it seems that the mass retail world has decided to ignore Thanksgiving all together in order to try to lure everyone into the stores to spend for Christmas. Why would they want to ignore one of the few truly American holidays. One of the only holidays that just celebrates our American history, family, friends and all of our countless blessings. I just don't get it.

I started thinking about this over the weekend because Friday night i went to my favorite outdoor mall which has fabulous restaurants, a comfortable movie theater and lots of cool stores. The Christmas tree was up, the walkways all decorated for Christmas, they were staging their Christmas tree lighting event for last Saturday (ie the Saturday before Thanksgiving). There was one notable exception- Nordstrom's. Nordstroms was decorated for fall/ THanksgiving, with fall leaves, turkeys, gourds etc. THey even had a sign on their door that I wish I had pulled out my cell phone to photograph. It simply read

WE AREN'T SCROOGES. WE JUST BELIEVE IN CELEBRATING ONE HOLIDAY AT A TIME.

Here, here I thought. My hat is off to Nordstroms.

I thought this day would never come!!

I started physical therapy in July 2006. My ortho and PT both wanted me to work on my core strength in preparation for my surgery and we thought it might help my back pain. Thus I started working with my friendly PT, Jonathan. Who knew how long I would be working with him, but who knew a lot of things. In the last year and a half I have taken a couple of breaks from PT (ie. for my surgeries in New York, when radiation kicked my tail etc.) but pretty much I have been there twice a week for a year and a half. These people have become friends; Jonathan a good friend, coach and cheerleader. I have complained about the exercises that he has me do and how much they hurt, but the results are obvious. Last week he had me doing lunges while standing on a dynadisc ( a sort of flat, non- slippery ball kind of thing). My personal trainer declared that my balance must be awesome if I could do that, and yes my balance is pretty darn good now. So, alas here we have arrived at the point where all good things must come to an end. We have decided to space out my last few appointments so we can see how I do with my home routine etc. So, next week for the first time in 6 months I don't have a PT appt. I can hardly believe it. What will I do with the time? While I am so happy that this means I am better and stronger all of which is good. I really well miss them. So long for now. Thanks for all your help.

I spoke too soon

So, a short 6 hours after I wrote my last post and I am resting on the couch icing Lefty. I went to PT this afternoon and promptly declared to my trusty PT that he would finally get his wish of examining my ankle when it was tired due to the aforementioned packing activities. So onward we went with the usual PT events and he began the not fun scar massage during which he declared that my ankle was extrememly tight. Um, I think I told him that, but apparently it was really stiff. The patient after me noshowed, so I got the fun of a full hours worth of scar massage/ desentization. Then to top it all off when he heard that I had more packing and box carrying to do, we decided that I shouldn't do my exercises. Yikes. What is PT without my hour plus of serious resistance craziness on wobble shoes. So, while Lefty is doing his job helping me get ready for the remodel- Normal it is not.

Packing

My kitchen is falling apart and has been pretty much since I moved in. Remember those projects I spoke of before that were too big for me to do alone- well this is the big one. My gas range requires a flame thrower to light, my oven is circa 1975 and my microwave is the kind that you are afraid to stand in front of because of the fear of radiation exposure and thank you very much I have had enough radiation this year. Plus, my cabinets are falling apart. So, the kitchen is being torn apart and rebuilt, and on the order of while there is a work crew in your house you might as well replace the flooring, fix the lighting etc.... You get the point.
So, for the past four days I have been packing up all of my belongings and storing them in the guest room, which is the only room in my house that will have no work done in this first phase. That is four days of boxing things up and carrying most of it upstairs to the guest room. Yikes, It is a good thing that Lefty is getting strong again because this has been no joke. Oh yeah, and becuase of all of the work I am moving back to my parents house while they go on vacation. SO, pack, pack, pack like a little worker bee I go.

I am excited about having this work done, but at the same time it is so overwhleming. When I go into those big home improvement stores to buy things I have to fight the urge to vomit. Yet, still I was so happy last night thinking that it was the last night I would have to pull out my trusty flame thrower to boil water. It will be worth it, right?

Happy Halloween

This weekend we celebrated Halloween at my friends fantastic party in the Hollywood Hills. I got dressed up as a pirate and set my mind for a party, and let me tell you we had a great time. The Hollywood Witches always decorate their house to the nth degree for Halloween and so we were celebrating in style. I was even able to wear a real pair of boots and dance for hours. Of course, Lefty rebelled towards the end which was when I looked at my friend who I had driven and declared we must leave- now. A little bit of ice and a good night sleep and all was good. It is so nice to feel like I can do almost anything and I don't have to worry so much about Lefty anymore. Yet one more victory.

A small sample of the decorations



Our hostess- the peacock


Little Red Riding Hood, the Pirate's mistress and the Peacock

One Year

My first surgery was one year ago today. One year, 365 days, 52 weeks, no matter how you slice it is still just one year. I started this journey thinking I was having minor surgery, but alas- not so minor. Yet here I am looking back over the past year, and large chunks of it are a blur but there is good stuff too. I laugh when I think about my stubborn climb to the 87th row of the Coliseum on crutches, my dad pushing me around New York in that hideous wheelchair while I insisted on helping to wheel the thing to feel like I had some control and did something active each day. My many friends traveling from near and far to visit me and support me through rough times. The hours that I spent absorbed in a puzzle of VanGogh’s rendition of Irises, which was sheer insanity. My journey through physical therapy, finally in its ultimate chapter, is definitely a blur of hard work and slow results. The daily trips to that surreal land that was radiation. That darkest time of all- late April and early May, during which time I was saved from complete insanity by my dear friend V-L coming to stay with me. Diving in Hawaii, or really any moment from that trip which is all so happily clear in my mind. Becoming a doctor again and discovering that I still do like my job. These are just a few of the images in my head from the last year, there are so many more things I want to forget and things I never well, but still it is all history now.

I think that I am grateful for not having known what I was in for when I started because I would have been more afraid. As it is, I have taken everything as it came and tried my best to deal and move on. I sometimes reread what I wrote here and I am surprised to discover how much I don’t remember and yet how much I do. I can still laugh and cry with myself. I am glad that I have kept this record of what I have been through. Even if few read it, it is good for me to have put my thoughts down. There are many things I don’t write about, but mostly my thoughts on my journey are here- some good, some not so good, some highly random. Thanks for reading, thanks for traveling this road with me and especially thanks for all your support. It has been one heck of a year.

Update

Thank you so much to those who have checked in about Arrowhead. It sounds as though things are looking up and our house should be safe, but the devestation from all of these fires is mind boggling. I feel terrible for all of those who have lost their homes and/ or remain uncertain about their status. It is all crazy.

Here is a recent map of the fires up at Arrowhead.

Sorry I don't know how to annotate this picutre, but our place is essentially just above the "E" in Fire.

Haven't We Been Here Before?

California is burning again! I sit here watching the news hoping to find out what is going on in the regions that effect people I care about, yet the scope of these fires is so overwhelming. There are fires everywhere, it really is insane. They are saying that many are arson, I just don't get it. I think maybe there are some crimes for which stoning should still be the proper punishment, or maybe burning at the stake. People are losing their homes, their memories, and even their lives.

My brother's in-laws have been evacuated from their home in San Diego and are staying with my brother. I have no info on the state of their home, although I am praying for them. There are many others at risk. It is so eerily familiar as 4 years ago, I watched a similar series of news reports as the fire was burning up the San Bernadino mountains threatening my beloved Lake Arrowhead. Tonight, that fear is recurring. There are fires in Lake Arrowhead. I have written before about what Arrowhead means to me, but I am not sure that I can ever actually describe what that place has meant to my life. My parents home is currently not so threatened, but they have limited personnel to fight this fire, and fires in the mountains are dangerous. The thought of it burning makes me sick to my stomach. I can only have faith.

Who says California doesn't have seasons. We do- fire season, flood season, earthquake season, smog season. It may not be famous for its colors or weather, but seasons nonetheless. Please pray for those whose homes are threatened or have already been lost and for those who are fighting these fires.

Once Again

One more time, I find myself in New York for a follow up visit with my doctor. I tried to merge this trip with enjoyable things to make it seem less crazy to me. I spent the weekend with LT and her new baby girl, then onto NYC where I stayed with MM and her family. Definitely one of the better side effects of frequent trips to the East Coast is the ability to see my friends there more often. Still, the box that I put myself in of traveling across the country for a doctors visit seems so insane to me, but I also think that having come to MSKCC was one of my better decisions and if this is the residual side effect, so be it. I now know that there are lots of people who do this- travel all over the country for their sarcoma care. Rare diseases tend to foster that kind of thing.

My last three trips to New York have been filled with fear on my part. A fear that was at times so palpable. The fear that I would lose my leg, lose my strength and independence, lose the ability to do what I want etc. Those fears are more or less completely behind me, and I have regained the strength necessary to do most things so I am filled with a confidence that it is all fine. That confidence comes from a place that believes that positive energy will impact my care and recovery. After all one month ago I was diving in Hawaii and relishing that ability and that gift. As I have said before life is beautiful and I enjoy it more deeply now.

So once again my doctor’s visit is a footnote on my trip to New York. Again I have to say how much I like and respect her. She examined me thoroughly including my now infected cyst on my face, she listened to my issues. She contends that I am ahead of schedule and she is extremely impressed by how strong my ankle has become again, and by how much I can do again. She has concurred essentially to the concept of unrestricted physical activity (within reason of course). She is pleased with how my graft looks. She even is surprised that I am regaining sensation to my heel at all, apparently she thought that would be gone forever. She has decided that since my chest xray is clear still (almost 1 year out), I can and should change my scan period to every year. So, I get a reprieve until next spring. Say Hallielulia. I feel so fortunate to have been able to make these journeys to New York, to have found a surgeon who actually gets me, if the cost of that is flying across the country, well then OK by me. My life is good I say, indeed it is good.

Just LIke Riding a Bike

So last night I officially became a doctor again by spending my first night in the hospital taking care of my little charges. Fortunately, the call gods smiled on me and it was an easy night. Nothing too crazy but enough to get me back into the swing of things. The hardest part of the night was making rounds (ie. walking around the unit talking about every baby) although I tried to sit as much as possible it took longer than normal as I knew none of the babies, but with the help of my friendly ice pack Lefty and I got through it. The other hard part of the night was really very sweet but still trying. Although, I have been back to work in my part time way for months I haven't been there at night in 11 months, so for 11 months i haven't seen our night nurses and they all wanted to welcome me back and find out how i am. I almost wished I had sent an email out to the staff first as in every room we entered I got the same questions. It is nice to know that they care, but I still don't like talking about my life as a patient especially not in front of my resident. Oh well, night #1 is now done and it was just like riding a bike- a little rusty at first, but it comes back fast. Therefore, I continue on the road back.

Addendum 10/12- Or maybe not
By the time i went to bed last night I was so tired I decided to not set an alarm this morning. I always wake up at 7am, but no not this morning. This morning I slept until 9:30. I guess my body is really not used to the sleep deprivation required by my job.

Really Just a Cyst

So, as everyone has appreciated the story of this thing in front of my ear was freighteningly similar to the original story of the mass in my ankle. I wanted to believe what everyone was telling me, but as it grew and started to bug me the similarities were just too much. A strange mass growing that everyone claims is "Just a Cyst." Fortunately, the head and neck oncologist who I saw last week got that. She is taking it seriously which I appreciate as last time no one really took me seriously. All that aside she just called me to say that the biopsy report is back and this time it really is "just a cyst." Thank goodness.

All of this makes me think back to last year when I blithely believed something I should have questioned. I sometimes get mad at myself for that. However, now I look at this situation, and i wish I was still that person who believes that as a healthy 30something nothing bad will happen to me. I know better now, but I miss that old me. A few days ago I was talking to my mom about something and she asked if I'd ever be the same as I used to be. I couldn't help but think of the song from Wicked "For Good" in which Glinda and Elphaba (The Wicked Witch) are declaring that knowing each other has changed their lives forever in many ways and they can never go back to the person they were before. The change isn't necessarily good or bad just permanent. I feel a little like that. I am different now because of having spent a year as a patient, different in many ways, and it is not necessarily better or worse- it is just different. So tonight I will celebrate this good news and continue to move on as tomorrow I become a doctor again.

Full Circle

One year ago (in a few weeks) I went on my annual pilgrimage to South Bend. It was the weekend of the ND-UCLA game, also the weekend before my 1st surgery. Of course, then I couldn't possibly have imagined what was in store for me, but alas, I specifically scheduled the surgery to be after my trip to South Bend adn long enough before the ND_SC game at hte Coliseum so that I would be able to go. Funny to think about now- but alas true.

So, the ND-UCLA game 2006 was one for the record books, ND won in a stirring 4th quarter come-from -behind kind of way. The type of college football that you remember for a long time and people will talk about persistently.


One week after my 1st surgery, I started physical therapy and I informed my PT that I was goign to the ND-SC game and that our goal for PT was to get me up to the 87th row of the Coliseum in a month. He understood the goal and I worked hard and I made it. Alas, the football team didn't show up. The game stank, but hey I made it crutches and all and we had fun.



Yesterday, a bunch of my college friends, all ever hopeful ND fans gathered at the Rose Bowl to watch unvictorious (the opposite of undefeated) ND team play UCLA. We are all so spread out that any time we are together it is fun, but the line on hte game was not in NDs favor. However, we filed into our seats in the 6th row (thanks Matt) and cheered our little selves hoarse and what do you know ND actually won 20-6. (just in case you live in a bubble and don't know that)




There you go my year as a patient bookended by Irish vicotories over the Bruins.
Go IRISH!!

Scary things

Many of you remember that this whole thing started over a year ago with a bump that everyone thought was "just a cyst", but it kep growing and was starting to hurt so I pushed and fought and got it looked at. Well, the rest is now history, but here I sit reliving some of that history. I have a new bump. It has been growing for months now and has tripled in size in the last few months and once again everyone thinks it is a cyst, but I am smarter now. Anyway, this thing has been eating at my subconcious and although I have tried to not focus on it the thought of going down this road again- horror. Yesterday I met with the head and neck oncology surgeon. I had a needle biopsy. I need to get a scan, but at least I am going forward. The belief is that this is not something bad, but I will feel much better when I know for sure. I should have more info by next week.

Travel Thoughts

We interrupt our regularly scheduled blogging for some random thougths on the sad state of airline travel.

In the past several months I have been on many long flights with various mobility limitations. I have flown needing to use my cane, in a wheelcahir, on crutches (having to depend on airport wheelchairs), and recently relatively unimpaired but needing to still keep my foot up as much as possible and wear my compression stockings. The combined set of experiences has left me with a newfound appreciation for those with disabilities attempting to get though our present day airports.

Several years ago, I underwent a long distance move after breaking my foot. At that time, I had to go on about 4 long flights on crutches, using airport wheelchairs. The experience was so easy in retrospect, although at the time I hated the loss of independence. Still the airport workers met you at the curb with the wheelchair, put you through special lines to check in, guided you through security where they passed the metal wand over you and scanned your stuff- all handled efficiently by the airport personal who took you from the curb to your gate. It took like 10 minutes.

Now, in the post 9/11 airport craziness forget about it. They still claim to provide the same service, but they don’t. I have been left in the middle of terminals in a wheelchair, alone with them claiming that someone would come and get me to take me to the next terminal. (Thankfully- fellow passengers had sympathy for me and helped to get me to my flight or I shudder to think of what might have happened in the midst of the Atlanta airport). Then upon arrival I was deposited at the baggage claim, alone and told to get my bags- Umh, hello- how was I supposed to do that? Again, fellow passengers intervened. Thank goodness for the kindness of people because the airlines have lost it. After that flight I swore I wouldn’t get on a plane, no matter what the reason, until I could be responsible for myself again.

So, fast forward 4 months and here I sit on my 4th flight in 2 weeks, and more or less I have kept my promise. I am responsible for myself. The only really hard part was the one long security line but still….. Heaven forbid you have to do anything a little different when going through security. I have complied with taking my shoes off, accepting the new airplane rediculousness that requires you to buy water either within the terminal or on the plane because they will only give about 4 oz of water in steerage and you can’t bring your own. All of that stinks but OK. My new beef is with security. I wear one compression stocking. So, I have a stocking on one leg and not the other- no it isn’t a fashion statement, it is the most comfortable way for me to get around. Well every security person seems fascinated by this oddity and begins a series of 20 questions for which they seem unwilling to accept anything short of the most detailed answer even though my stockings are sheer and my scar, which I have to show them, is visible through these stockings. Plus they are so tight, you couldn’t hide anything in them anyway. No, not good enough. I have had to go through secondary screening because of this oddity three times now. When I was traveling in the lovely orthopedic boot. I had to go through secondary screening while they swiped every inch of my boot with their bomb detecting cloths. It leaves me questioning what they do to the people with artificial limbs. Do they make you take it off and wait on the chair while they scan your limb? It is as though you sacrifice your civil liberties when you board an airplane anymore. And I haven’t even gotten to the issue of your stuff, which you must subject to be searched and just hope that those security people won’t break or steal it.

I applaud those people who were stranded on that horrible flight that sat on the tarmac for something like 9 hours last year in their attempts to get a passenger bill of rights. I wish them luck.

Whew thanks for letting me get that off my chest.

Best Laid Plans

Tonight I was supposed to become a real clinical physician again by taking my first in house call. I had prepared for it mentally. Although, I was nervous, I felt up for the challenge and as ready as I could be. Time to to just do it. Well, on the order of we probably could have seen this one coming- after three cross country flights in 5 days- this morning.... I have a bad cold. My nose is like a one way hose pipe, my throat hurts, my ears are ringing, and I am dizzy. It has gotten progressively worse since i woke up this morning in the mode of the old me and went to physcial therapy anyway, where my PT told me, under no uncertain terms, that I was not to work as I am sick. Yes, yes, yes- But I have certainly worked sicker than this before, I say. So, I debated with myself, I called someone as crazy as myself and in the end, I did the right thing by saying I couldn't do it. I then slept for two hours and now sit in my bed writing this post with a bowl of soup and a large glass of water. Oh well, next week I'll start.

For those keeping score- since I got back from vacation

Old Lisa- 4 points for standard overcommiting activities
New Lisa- 1 big point for staying home when sick and contagious.

Time Traveller

I feel like I fell asleep in Hawaii on Monday and woke up on Wednesday in Nashville. Yes, I was briefly in LA, but really it sort of felt like I woke up in a fog in the Country Western capital of the world and I couldn't quite figure out how I got there. Additionally, in this meeting the last few days, I have spent more hours continuously working then I have in at least 10 months. Maybe it is good prep for me, as I am officially reentering my clinical work world on Monday when I have to spend my first night in the hopsital since last November. I am afraid of going back to work. I hope that my skills aren't rusty. So, I guess officially I woke up form my vacation and started sort of working full time (even though I am not going to be fully in the clinical schedule until January). Still it feels like I now work full time. I hope that I can go forward and stick to my guns with my current goals of how to work life and career in together.

I think I have entered phase 6- Back to Work Better Than Before

Wish me luck

Blessed

4 months to the day after I was allowed to start walking again, I woke up in a hotel room in Hawaii looking out over the Pacific Ocean. I decided to go for a walk along the beach to something called Sweetheart Rock, the Hawaiian equivalent of a Romea and Juliet tale. The day was beautiful, the sky amazing and I relished each moment.

Sweetheart Rock


Later that day I went scuba diving with my friend Lisa to a point called 1st cathedral and a second spot, no name paradise. I hadn't been scuba diving since I was in Belize a year and a half ago where I got certified as my 35th birthday present to myself.
The dive was fantastic, and the day amazing. It hit me towards the middle of the day that it marked this 4 month point. Somehow, it seemed so powerful to me while I was in this cathedral thing, an underwater arch of sorts with openings to the water and sky above that allow in an etheral light- if you don't believe in a power greater than yourself than you have never been in a place like that. The scope of what I have been through, the beauty of where I am now, the miracle that has lead me here, it all seems so great. I have said many times that coming to Hawaii with the ability to do what I am describing gave me strength to forcus, strength to get here with few limitations to what I can do and here I am. I feel so blessed.

A few pictures from below the ocean floor.





Lisa and I underwater, hanging loose.

I might not come home!

The view from our balcony

LF and I enjoy a welcome cocktail

More random pix

Aloha

I can't believe it is finally here. I leave for Hawaii tomorrow, early. I am seriously like a kid before Christmas in hyperoverdrive. I can't wait to get there, swim in that wonderful clear ocean, dive to the depths of the sea, hike along the cliffs etc. I can't wait. I can't wait. I feel like I have been waiting and dreaming about this trip for so long, as I made the reservations months and months ago to give me something to look forward to when radiation was kicking my tail and I was feeling sad and sorry for myself. See that is how I dealt with that miserable present was to give me something wonderful to look forward to in the future. Now the future is here and it is WONDERFUL and that present is a distant memory that I can almost pretend happened to someone else. As I said the other day, this trip has given me purpose in my rehab, it has given me something to look forward to. I have had concrete goals and now I am here having met almost all of my goals. I am off to enjoy all the previously mentioned activities and more.

Bon voyage, I'll see you on the other side.

ALOHA

Why I do my job!!

I have moaned and complained about my work lately and especially in my last post. My work is demanding and stressful and can be a political minefield. Sometimes I need to be reminded of why I put up with it and actually even like it. Being away form the bad of work for so long was great, but being away from the good also took away that positive reinforcemnet.

Yesterday while working feverishly on project number 2, I got a call that a former patient was in the unit and wanted to see me- well OK her parents wanted to see me. I dropped what I was doing and went out to visit. Now, let me tell you a little about this baby. SHe was born with a diaphragmatic hernia and was about as sick from that disease as you can be. Without giving detail, at a little over a month of age she was dying and we had exhausted all standard therapy and even some not so standard therapy and her body was beginning to quit. I talked to everyone i could think about about what to do with her. I had to have "the talk" with her parents that they needed to consider how they wanted her to die, but I had one thing left up my sleaves a medication that I had studied when I was a fellow, but it was experimental. We tried it, it worked. Within 24 hours we weren't talking about her dying anymore, she was breathing on her own off of all medications in a month. It was a few more months before she went home because she wouldn't eat and was fragile, but did amazingly well. Yesterday at 17 months of age, she walked up to me and gave me a hug, while looking to her dad for support. She is beautiful. She has a life to look forward to and with some more work a bright future. I started to cry. Her parents started to cry. They hugged me too. Reaffirmation that I like my job and am good at it- DONE

Confessions of a Chronic Overcommitter

I have written a lot recently about the wonderful things that i now get to do and how much happiness they bring me. I have sort of ignored talking about or writing about my work life, which used to so dominate my life. Just last night a good friend said how proud she was of me that I have never let work dominate my conversations or social life. I had to think about it for a few moments, until I ultimately agreed. I have chosen for years to try to leave work where it belongs which is at work where I have spent way too much time anyway. I mean really when you work nearly a hundred hours a week, why on earth would i want to think about or talk about my job when I am not there. Plus, I really don't like talking about my job, or at least the specifics of it with people who don't understand it, even other doctors from different specialties. I am so superspecialized that few understand what I do.

Still none of this is to say that I haven't done some crazy things to try to keep my often antagonistic goals of keeping work and life seprate when both are demanding. Back when I was a fellow, I planned a trip to Greece with my best friend. I carved out 9 days for the trip, when I only had a week vacation, by arranging to do the following insane things. I stayed up all night the night before i left to finish a talk that I was scheduled to give the day after I got back, I met with my boss and mentor 5 hours before getting on the plane to review said talk, and I was scheduled to work in the hospital overnight, responsible for the lives of very small babies, 6 hours after my international flight was scheduled to land, while yes giving this talk the next day on no sleep for days. What on Earth was I thinking, yet I used to do things like that all the time. No wonder I didn't mind slowing my life down. However, on that particular trip, which was Sept 2001, the world changed while I was a way when Sept 11 happened. My flight home got cancelled, there was no way for me to conceivably get back for my call or for the talk the day after. Everyone understood, no one was flying. No one blamed me. Yet somehow I felt guilty. I had to call multiple times to make sure that someone was covering my call. Hello, what the heck was I going to do about it, I was stuck in Greece. Crazy- Really, truly, seriously crazy. I could go on, I have scheduled myself many other an insane journey in order to try to meet the demands of my life and my work. Case in point number 2, when I was interviewing for my post fellowship jobs and flew home to Chicago after a 3 day interview in Phoenix, arriving at midnight. I did my laundry, repacked and reported for work at 8 am the next morning, where I proceeded to work for 26 hours, with nary a moment of sleep before reloading a plane to fly to LA for another interview at the hospital where I work now. The sane approach to that would have been to declare that I couldn't work that weekend and to have flown to LA from Phoenix, an hour flight, and spent the weekend, which was my mom's birthday, with her, but no I didn't do that. Like I said I used to be crazy.

So, why think about this now. I am leaving for vacation in 5 days. I am going to Hawaii with a good friend. I am going to scuba dive, relax, play in the ocean, try to avoid the sun, and just enjoy that almost 11 months after my first surgery I can finally do these things again. This trip has kept me focussed on my rehab, it brought me purpose when things were not so good. I have been looking forward to it for months. I have refused to bring work with me. Yet..... I agreed to write a reveiw chapter, on something that isn't exactly my area of expertise, which is due before I leave. I was initially supposed to write it with someone else, meaning I'd write half of it, but she backed out leaving me to the whole thing with no extension to the deadline. OK, fine. I am almost done, but I have had to work on it all weekend, and it is provoking anxiety in me. I so wanted to get ready for this trip leisurely and enjoy my new outlook on things. But no, because once I finish this paper, I have another project which also must be completed before i depart becasue i have stupidly agreed to represent my hospital at some national meeting, which will require me to turn around and fly to Nashville 36 hours after I return for my vacation. Yikes, don't I learn.

Nonetheless, i will be on a plane to Hawaii in 5 days, so what if I have to work some today. I will hopefully get everything done. Oh goodness, wish me luck.

Life Is Good

This labor day weekend was HOT, SERIOUSLY HOT in Southern California. For the first time in over a year my air conditioner ran all day and it just couldn't keep up with the heat. I was melting away when I decided that there was no cure for this kind of heat to be found in the valleys of LA at sea level. Fortunately for me I had been invited by my friend Kim to go sailing on Saturday. So off I went to really the only place to be on Saturday, the ocean. We sailed with a group of 8, some good friends some people I met that day, but everyone got along great and after a lot of coffee, a couple of mimosas and various forms of unhealthy food we were on the high seas comfortably cool and fast friends.



We were then greated by a pod of dolphins who decided that the House of Prince's sailing vessel was an excellent thing to play with. They frolicked in the water, jumping around us, swimming under the boat, spurting water in the air for what seemed like a long time. Captain Stew sailed the vessel expertly so that we could stay with them. A fellow blogger and passenger on the ship LA Daddy, took lots of pictrues which are great, but even they didn't show the wonder of being surrounded by these playful dolphins.



Then as if that wasn't enough fun, we still got to spend the rest of the day hanging out on board ship, and basking in the sun and not melting away. An aside here, I am supposed to keep myself and especially LEfty out of the sun for 3 years after radiation, but I live in LA and I don't like to stay indoors. SO, I have researched sunscreen, bought large quantities of the supposedly top rated sunscreen which i put on my scars every morning before my coffee- and i don't do anything before my coffee. I have tried to stay in the shade etc, but I am white, literally the definition of white- quick to burn, not very effective at getting a tan etc. All of my care at staying out of the sun has left with almost no base and although I wore a hat all day and put on a long sleeve shirt after lunch, my little white skin was no match for a day in the sun. Thus, my first sunburn of the summer and alas it was already Labor Day. However, we won't let that detract fromt he fact that it was a great day.

Then as if that wasn't enough fun, it was still 2000 degrees in the shade on Sunday, so I escaped to the mountains where thunder showers were nicely keeping it cool and I could persue my favorite mountain activities- long walks, kayaking, sitting on the dock (under the shade) reading a good book, etc. LIke I said this weekend Life is Good.

Sadly I had to returned to reality today. Reality stinks.

Feelings

Over the last month, I have made significant progress in the world of physical therapy and am able to do more and more things and I get stronger all the time. I am quite proud of the progress that I am making although I am getting tired of how much time the whole thing takes. Not only am I getting stronger, but I am getting more and more sensation back to my heel and ankle, still no sensation over the graft itself, but the rest of the foot is starting to find its voice. I am generally gald to hear from Lefty when it sends memos my way, it is comforting to know that Lefty has opinions again. However, many of the sensations are decidedly unpleasant and my surgeons seem to fear that I am developing a hypersensitivity so I am now under orders to desensitize my poor little heel/ankle. Desensitize a not so small word that really denotes another form of torture as you purposely induce discomfort with all kinds of different textures so that you can get used to the feelings. ICK... Still, intellectually I know that these feelings are one more big step in the healing process. So, step by step I go.

Gypsy Kings Or where Lefty fights back

Saturday night a friend got passes to see the Gypsy Kings at the Greek and invited me to go along. Now, I love the Gypsy Kings, their music reminds me of times long ago and it is the kind of music that you cannot help but dance to. Really, I challenge you to listen to Bombolea and NOT want to dance, really. So, I accepted right away; however, there was a catch these passes were not for seats they were to stand along the wall that separates the seats at the Greek from the fancy boxes. A great spot to watch the show and plenty of space for dancing, but I feared standing for so long. However, there was no way that I was going to refuse such a great opportunity so me and Lefty rested up all day, I donned my strongest pair of compression stocks and got dressed to dance. The concert was great, the night perfect, cool enough but not so cold you needed a jacket (as opposed to when I saw them last year at the Greek and it was so hot that removing your skin seemed like a viable option, but I digress), the moon was bright, we didn't have to fight the crazy parking scenario etc. A perfect, SoCal concert experience at a fantastic venue... But that standing thing. I am impressed that I did it, but I was in the moment and it was fun. However, when I got home Lefty was MAD and no amount of ice or massage would quiet her down, so I gave up and went to bed. Bad choice, in the morning she was stiff and sore and still cranky. I did my usual stretching etc., to some avail, but still this morning her voice is being heard. Oh well, I had fun and after all I am supposed to be pushing my self out of my comfort zone per doctor's orders and really what better way to push yourself out of your comfort zone then by dancing to the sounds of the Gypsy Kings on a lovely So Cal night.

memory is a funny thing

7 months ago, as I watched my poor little skin graft slowly heal I would never have believed that I could ever forget what it looked like back then. In the ensuing months I have taken lots of pictures of my ankle and graft largely because my surgeon is across the country, and she wanted pictures in lieu of being able to see me. Therefore, I have pretty much every stage of my healing documented for posterity. A while ago, she asked if she could use these pictures for teaching and patient education. I happily agreed as I am a strong advocate of medical education and as a patient, I think I would have dealt better with the radiation side effects if I was better prepared for the dissolution of the skin on my ankle. Anyway, I don't often look at these pictures because a)they are not pretty, b) I certainly don't show them to others, and c) I barely want to remember it myself. However, my PT has asked me for copies of them to use for PT student education etc. Therefore, the other day I sorted this lovely photodocumentary of my ankle and let me tell you I had forgotten. If time is supposed to be healing, maybe part of how it works is by removing disturbing images from your memory bank. Maybe. Certainly memory is funny, as I never could have guessed that I would forget; however, I also never could have imagined that now 7+ months later, my skin wouldn't be completely healed, so maybe not fully knowing what you are getting into is a good thing. Still I celebrate my forward progress and watch for that final scab to come off.

Shoes Again

Back in March, I bought my first pair of post surgery shoe, they had to meet exacting standards of what was allowed and it was no easy feat. I was so proud of those shoes. I was so happy to not have to wear that big hideous boot on my foot after nearly 5 months of wearing that thing or not even being able to put anything on poor Lefty. While I loved those shoes when I bought them and I still do like them, I even bought a second pair of the same dansko sandals in black. Really, I have only worn those shoes for the past 5 months. I walk into my closet every day and mentally challenge myself to ignore, my rack of beautifully colored fun shoes. I have tried to not think about it as I prefer to focus on what I can do not what I can't, but sometimes I will pull a pair of shoes off of the rack and think what if... I sometimes even try them on. The first time that I did that (back in April) I couldn't even stand in a pair of two inch kitten heeled slides. There was no way, my weak little ankle could have even taken a step. I put them away and didn't venture to try that again until June when I could stand in the same shoes and take a few cautious steps. So much about shoes I know, but I miss my shoes.

So, where's the punch line, well on Tuesday I saw my foot and ankle surgeon (different than my tumor surgeon- so many doctores, so many appointments). Anyway, I talked to him about this shoe thing, and he declared that I should try it. Having been down this road before where my PT then vetoes things like this as he sees me twice a week and has a little more knowledge about my current state of strength. I waited to talk to him; and lo and behold he concurred. Hello- So, last night when I met friends for dinner I wore my cute brown sandals and even painted my toes for the occassion and you know what it went OK. It may seem stupid to many, this shoe obsession of mine, but to me it is one more sign that I am getting better and back to the old me.

Oh, said foot and ankle guy also directly told my PT to start to be more aggressive with my exercises and push me out of my comfort zone. And boy howdy did he yesterday. I have quite a few sore spots today, but it is all good.

My garden misses me

So, now almost ten months after I entered the world of the physically challenged, I am feeling confident enough and strong enough to start to really work in my garden. So, for the past two days, I have spent 2-3 hours each day trimming my plants, reworking my sprinkler system and fertilizing everything. Let me tell you there was so much to be done and still is a lot more to do, but I love the concreteness of a gardening project. I love shaping my plants the way I want and seeing them flourish with a little help. If it weren't for my compression stocking that kept getting wet and muddy, and the need to ice my ankle; I wouldn't have even thought about it all day. Oh yeah and the fact that I am exhausted. Still I think that this counts as a major milestone. Progress, yes, progress.

So, garden don't worry I won't neglect you any more.

Night blooming cereus

I have a plant sitting on my front porch that looks like some kind of succulent reject from the cheap plant store. Seriously though, I love plants and I fancy myself somewhat of a gardener, but this plant is not attractive. So why does it sit on my front porch in its unattractive glory- because of the flowers. One night out of the year, this thing has flowers and let me tell you these flowers are worth it. They are big beautiful white flowers that have the most amazing scent. It is not strong persay, but clear, sweat and fresh and penetrates everything. You can smell it best 10-20 feet away. A little bit heaven. I am surprised that those people who make scents have never tried to bottle the smell, but actually I am not sure if they could, and maybe they shouldn't because it is what makes this plant special.

So last night was the one day out of the year that this plant bloomed and after putting up with the ugly duckling of plants all year round you have to take note of its flowers. Of course, the flower didn't open until after 10:30 and then I sat out on my porch and drank in the wonderful aroma. Also the scent wafted in through the open windows so you could still smell a little of it when I got up this morning. Spectacular


The flower last night

Do It Yourself Girl

When I bought my house several years ago, I was obsessed with home improvement. I bought a do-it-yourself book from home depot and attacked my projects with gusto. I was so spurred on by getting rid of what appeared to be 20 year padded silk, walls and ceilings in one bathroom and my bedroom, they were hideous and had to be removed pronto. Of couse, I discovered that the padding was covering many, many holes in the walls. Anyways, after months of hard work and becoming very good friends with my spackle, I finished the projects. Landscaping followed and then I took a break from home improvement for awhile, because the next projects were to big for me to do myself. I discovered that I liked these projects, and the whole weekend warrior homer depot thing. So, what is the point of this tale, well- obviously since Oct I have been unable to do any projects, big or small around my house. So things have been piling up, shall we say. Last week, I had my back patio redone and landscaped the side and back of the house. I love it, I have now spent every night sitting, on my patio listening to my new fountain, reading. This was one of those projects that there is no way I could have done myself, but every big project leads to more little projects and so Sunday after church I ensconced in full force puttering and completing of these little odds and ends. I did things that have been put off for months. It was so good to be able to do some of these things, I even climbed my back hillside. Tomorrow I am going to go get some paint, to finally paint my spare bedroom.

Hello, project girl, nice of you to come back.


The fountain- The centerpiece of my new patio

Sadie

The assertive patient has inspired Joint Blogging Again.

Over the last several months, I have specifically thanked many of the people who have helped me on this journey- my family and friends. I know that I have gotten to this point with my sanity reasonably intact because of everyone’s help and support. However, there is one very little being who has been with me every step of the way (except for her hiatus at the beach with my brothers family, while I was in New York), who gets very little recognition for her unending loyalty. Yep, that is my little pesky dog, Sadie.

Sadie joined my family 3 years ago when she was just about 6 weeks old and barely over a pound. She has been my nearly constant companion ever since; however, I never fully realized the real truth of the bond between a dog and its owner until I got sick and then the canine intuition became so clear. She has been so acutely sensitive to my moods. When I am happy she gets me out of bed every day, encourages me to walk, helps with my morning stretching, makes me laugh with her antics, etc. However, on my bad days which fortunately have definately been in the minority, she knows just what the right response is to the impending badness…
1- stay clear and let me be alone- those are the real meltdowns
2- sit beside me offering her support but no words of wisdom, no platitudes just support
3- lick the tears off my face as if saying it will get better
4- bring me toys and convince me to play with her- the translation- get over your self and smile there is fun to be had.
Further, she knows when it is time to transition between the stages. If I could give one word of advice to support people out there- it would be to follow the guide of the person’s dog, they know exactly what kind of support is needed at any moment.

Now, that I am getting better and stronger and hopefully, all of those bad, teary moments are a thing of the past. Sadie is an eager participant in my new walking and hiking skills. She loves it when we go up to mountains and she can run her favorite trails. She is so happy to go on her daily, sometimes twice daily, walks. She is almost as excited about the progress that I make as I am. However, the downside is that as I get better and have to go back to work her reward alas is to be left home alone again. It hardly seems fair. All of that devotion and that is the reward she gets. Sort of like M. Acklam’s, thought “We give dogs time we can spare, space we can spare, and love we can spare. And in return, dogs give us their all. It's the best deal man has ever made.” While I may argue, that I give Sadie more than just what I can spare there is no denying that I get the better end of this trade. Sadie gives me everything she has and in return she just wants a couple of hours of attention a day. Nice

Sadie waits patiently while I write this post.


Sadie exerts her wish to not be left behind by climbing into my suitcase of her own accord.

Sadie helps me make the slipcover for my couch- time passing tactic number 5 during those darkest days late in radiation and in the post recovery period when I couldn't walk and was crawling around my house while doing this project.

My goal in life is to be as good a person as my dog thinks I am.

Happiest Place on Earth!!

Hey Lisa, You have conquerred cancer surgery, radiation and are making great strides with getting your strength back so what are you going to do next.....I'm going to Disneyland.

Remember those commercials from many a year ago. I can even hear the tune in my head. Well, so that is what I did on Saturday. I spent the ENTIRE day at Disneyland. I even swallowed my pride (or reentered reality) and rented a wheelchair for the day. The walking around the park I might have managed, but there is no way I could have stood in the lines. Plus, going around Disneyland in a wheelchair means you don't have to wait in all of the long lines, which was really helpful for the new Nemo ride, which had 2-3 hour long waits. We even got stuck inside of Space Mountain which means we got to ride the tracks with the lights on and then they let us ride again for the full experience. Let me tell there are few stones unturned in Disneyland and even California Adventure after our 14 hours there on Saturday. It is so rare that you get to to spend a whole day in touch with your inner child and just have fun- and I revelled in the opportunity. I was so exhausted by the end, which is funny as I spent most of the day in the wheelchair, but it was so fun and the fireworks were great. The Happiest Place on Earth- Indeed

(Sadly my camera misbehaved so the pictures turned into movies, but as we didn't know we were taking movies they are really not good.)

Sea Squirt Sarcoma Internet Buzz

Here is a complete break from my usual blogging habits, but it hit a cord with me so you'll just have to bear with. As most of you know, I had myxoid liposarcoma a rare variety of a rare sarcoma in an even rarer spot- my ankle. I don't know what the total numbers are, but they aren't big. While I've never really sought to be average or common, there are some real downsides to having a rare disease. Hence journeying to New York for treatment. Over the past few weeks the internet has been buzzing about the NIH specifically cutting research funding for sarcomas, because well they are rare so impact per effort/ money is less. I don't know the details about all of this, so I haven't weighed in on it yet becuase there is always so much more to the story then what is reported. However, I have found the discussions interesting as I work in a field where we often need to look for "orphan drug" development becuase what I do in my doctor world is also rare especially in its most severe forms. See like I said, I never aimed to be common.

Now, this is even more interesting, it seems that there is a new thing, causing some buzz in the internet world which is that they have discovered, a substance from a Sea Squirt that acts as chemotherapy specifically against myxoid liposarcoma. This is good news for liposarcoma patients and maybe even for sarcoma patients in general who have metastatic disease, which thank God I don't. As it highlights that all soft tissue sarcomas are different and should be treated as such. Even more it highlights the careful balance between the environment and health and our need to be good stewards to the world around us, above ground, under the sea, everywhere. It reminds me of that movie from the early 90s with Sean Connery, Medicine Man. As I recall the plot, Sean Connery has found an extract from the flowers that appears to cure cancer, but they can't isolate it. They fight against time as developers are coming to destroy that part of the rain forest and when they finally find what they are looking for it highlights the need to look at the careful balance in the environment. Sorry I won't give away the ending in case you want to order it on netflix. None the less this sea squirt is a seemingly innocuous sea animal that starts out life mobile and then morphs into somthing like a sea sponge by the time it reaches adulthood.
The above photo is an adult spongy type sea squirt and to the left is the embryo sea squirt with a tiny brain and spinal cord so it can move.


Like I said- different then my usual posts but hopefully, thought provoking.

July 4th week

So, I have now been officially back to work part time for one week. Of course, that one week happened to fall over July 4 for which I had two days off and during the week in which I had an entire day of appointments scheduled- MRI (with no residual disease- yeah!!!), PT and a doctor's visit. Therefore, once all was said and done I was at work for two half days last week or about a total of 7 hours- far less than I used to work in one day. Yet, still I somehow found both days exhausting. Literally fall asleep while laying on the floor playing with Sadie exhausting. I have no idea why it was so tiring yet alas as my surgeon keeps reminding me- I have been through a lot in the last 8 months, it will still take time. Next week I am going to try for three half days and may even get myself resituated in my office. However, we'll see about that..


In far more fun news- July 4 was spent up at Lake Arrowhead with friends. We had 5 adults and three children (two of whom are babies) and it was a compeltely enjoyable combination of people and the fireworks were fantastic. Kyle at the ripe old age of two was somewhere between mesmerized by them and a little afraid so he watched them while holding onto his mom and then the next day kept saying fireworks, fireworks. So, I guess it was successful in spite of the heat.

The fireworks over the lake.


The only way to escape the heat was in the water. Kyle got into the action by continually getting in and out of the water with a myriad of flotation devices.

Sadie even had to get into the water to escape the heat and trust me she is not a water dog.

July!Phase 5

For months now I have been saying that I would go back to work part time in July. At first I had thought that maybe it was a little generous, but I never expected that when I told people that radiation would set me back how true that could be. SO, the reality is that July isn't as generous as I thought. Anyway, now here we are July 1, and tomorrow I start back to work albeit VERY part time and a lot of what I will be doing will be from home. Yet still there is something so real about having arrived at July. Four months ago when I targetted this as a return to work date, it seemed so far in the future, almost like the next decade. I who used to fight to secure time off from work have not really worked in 9 months. I never would have thought that possible. The other day I was communicating with a good friend and fellow neonatologist who is now looking at taking a prolonged time off for very different reasons and she was so unsure of how she would tolerate the time away from work without going crazy. I tried to reassure her that after a few weeks it gets much easier. Of course, for me feeling lousy made it easy to not miss work too. But now I don't feel so badly and there is so much I can do, (of couse, still a lot I can't do) and I feel like I still have so many things that I want to do. However, the truth of the matter is that I am truly not going to be working anything close to full time by anyone's standards for a while so it should be OK.

Thus, begins Phase 5- STEPPING FORWARD WITH TWO FEET

And yet so far to go

If my trip to the mountains reminded me of how far I have come then the past two weekends have reminded me of how far I have yet to go.

The past two weekends, I have gone to perfectly normal work/social engagements. I have attempted to prepare myself for the events, and engineer it so that my inability to stand has the minimal impact by commandeering a central table with a few other people and then have people come talk to me. You see no more circulating for me. Nope me and lefty claim our two chairs and pretty much stay put. OK that was fine. However, I hate being relatively isolated at a party, I want to wander and talk to people etc. So, when I couldn't take it anymore I went to wander a little (emphasis on the little here people) and my foot felt like it might explode. So, back to my chair I went, learning my lesson. All pretty good so far, but then the end of the parties arrive and you have to do the saying good-bye thing. Which again requires, yes you guesssed it- standing, so by the time I got to my car Lefty was mad at me. Then comes the drive home, consequently by the time I took my lovely granny sock off Lefty was screaming. As if he was saying, hah- you thought that you could go back to not thinking about me, but no way. I'm here and I don't like to be down yet.

So, there it is although I celebrate all of the things that I can do now, I try so hard to have patience for that which I cannot yet do, but patience is hard.