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.