Roaring in Sarasota (the universe is resonating)!

I have been waiting to post until I had some real news to share.....and the good news is that it is great news!

Paul and I just returned from my appointment with my surgeon and chemotherapist and the results from my tests that were run 10 days ago are excellent. My next visit will be January to repeat all of the scans, x-rays and lab work.

I went feeling confident that it would all be good, but the rush of joy that came from hearing the news made me absolutely giddy :~)

I was hoping they would have some answers about the Chemo induced neuropathy I am dealing with, but alas....there is no definitive outcome to expect. I guess I will just have to wait and see what happens over the next year.

Based on what Dr.Letson (surgeon extraordinaire) expressed to me in regards to my surgery and recovery, I am at a functioning level that is way beyond the normal expectation for the very invasive surgery he had to do to remove the tumor! I guess a bit of neuropathy is considered a little collateral damage when you look at the big picture.

So to all of my blog friends who have supported me during these past 9 months.......open your window and you may be able to hear the sound of roaring....that would be me

Oh and by the way, when my chemotherapist asked me how I was dealing with the ear ringing I have as a result of Chemo damage,and I told him that I don't think of it as ringing it is that I am now able to hear the sound of universe resonating ;)

Leaving Port!

Today was another milestone in my journey back to the land of normal.

I went to , this morning, to have my port removed that had been placed in my chest for chemotherapy purposes.

It was great when the doctor pulled it out and held it up for me to see.

My comment to him was that it looked like E.T. :~) So happy to see it on the outside of my body!

So today I left port...so to speak as I left my port in Tampa....I am so looking forward to a smooth sail from now on.

Fantastic News!

Paul and I just returned from Moffitt with fantastic news. All of my test results came back clean and Dr. Letson told me that I am doing a great job on rehabilitating my leg.
My next appointment will be on September 26th and every three months there after to follow up over the next two years.
As all of you can imagine......we are so very happy and relieved.

Celebration is in order for this evening :~)

Testing.....Testing... 1-2-3

So here I am back at Moffitt three weeks after I came for my last round of Chemo. This time it is not in patient, and it is to do tests to check out the state of affairs after all of the Chemo treatments.

The schedule has me here from 11:30am start time with my last appointment for a MRI at 6pm. Currently I am drinking a copious amount of a mystery drink that needs to be ingested for my CT scans. Hey, it is better than doing Chemo. My standards of what is okay have really come down since December!

I will be back on Monday afternoon at 2pm to meet with the surgeon, Dr. Letson, to go over the results. Naturally, I am sending all of my positive energy into the universe that it all is good!

I will be blogging again after I have news....meanwhile, Paul and I will be celebrating our 18-year wedding anniversary with a romantic dinner out this weekend  : )

Small Glitch

I woke up today feeling good. It was early (6:30 am) so being anxious to get up and looking good for the roving chemo team I bounded with my tower to the bathroom to freshen up. I felt so good after that I did some of my Pilates mat exercises on the bed, followed by the light leg work I do with ankle weights for my operated leg.

Team came around....liked how well I looked and declared me fit to go home at 6pm when chemo is completed....yay!

Half an hour later comes a glitch. It seems that my hemoglobin level is at 7.7 and is supposed to be at least 11.7-13.7 so blood transfusions are necessary before I can leave.
I was of course so disappointed, as they were unclear as to whether I could receive the blood with the Chemo which could have kept me here an additional four hours tonight after 6pm.....do the math!

Happily I can report they are transfusing me as I type and will be blood fortified by 4pm so I Can depart this evening as scheduled.

I must confess, I did have to hold back a few tears when I thought I was going to be held here late into the night. Even Virgo Warriors start to hit the wall every now and then during such a big adventure! Rest assured, I am back and ready two roar :)

Finally!

The Liquid Plumber worked and my last Chemo treatment seemed to be going for once close to schedule.

My nurse, Leslie, who has been awesome came to my room as the pre-Chemo hydration liquids were running dry to say that the pharmacy had not sent up my Adriamycin and Cisplatin cocktail. In the midst of this a short black out occurred and left me with a flashing digital wall clock and a TV that will not reset itself! At least the pump on my tower stayed functional!

At 6:45 my drugs came through and by 7pm I officially began my final dance with the crystal tower!

Clock is still flashing and TV is not working, but I have my IPad, so....
Life Is Good ; )

Got A Bed!

The good news is that I was called before lunch time and informed that there was a bed for me!

My friend, Donna, was able to give me a ride as Paul had meetings already scheduled today so getting me back to Moffitt was going to be a big problem. Nothing comes easy with this cancer dance and trying to maintain a normal life schedule.

Check in at admissions totally uneventful and the room was ready as soon as I got to the fifth floor.....yippee!!!!

Of course I should have known it was going too smoothly and something was bound to occur.

I developed a little clot in my port and so when they tried to access it no blood flow would come out. Two nurses looked at it and decided the port needed to have Heprin injected into it to dissolve the clot....makes me think of Liquid Plumber. So this takes an hour to work which means my Chemo cannot begin until this problem is resolved.

Nurses Needed ....

So we are driving home from Moffitt because they could not admit me!

After waiting an extra two hours to see Dr. Conley (that was how behind the Sarcoma unit was running) we went to admissions expecting to get me in a bed and get started on the Chemo.  

Not to be!
 
It seems that they are so short staffed with nurses that it was absolutely impossible to get me in.  Amazing huh?
The hope is that they will be able to get me in tomorrow afternoon.
 
It was so ironic that this occurred, because we had just wrestled with whether to wait one more week for my Chemo or go for it.  My doctor felt my water retention issue was not serious enough to force me to wait......I was so ready to go for it.
 
So stay tuned friends!

My Feet Are Swollen :(

Tomorrow I return to Moffitt for my last round of chemotherapy, and I am ready to go!

I had some worries over the weekend concerning some strange changes in my body that crept in making me wonder if the Chemo treatments are causing damage.

My feet and ankles became swollen and I had a weight gain of three pounds over a couple of days. Wish that I could claim indulgence for the weight, but not the case. Since kidney damage is a known possible side effect from the Chemo cocktails, my mind went immediately there. Paul and I emailed Dr. Conley on Saturday afternoon and he replied by saying we will discuss the situation on Tuesday (tomorrow) when we meet before my scheduled last round.

The good news is that today my swelling is gone and two of the pounds have disappeared when I weighed in. I am hopeful that it was just a reaction that commonly does occur and treatment will go as planned.....I am ready to get this chapter completed.

The next time I blog I will have the answer and so shall all of you  : )

"Come Out of the Dark, Come Into the Light" - The Wizzard of Oz

Yesterday/Wednesday
a pretty typical day doing my chemo. The fun part was being greeted by nurses who remember me with a hug and a smile....best medicine for me!

The night before, Tuesday, I had a visitor nurse knock on my door so that she could introduce herself. She was so kind to share that she had been observing me on the floor during my past two rounds cruising around with my tower and my very cute hair look I have going on. She wanted to compliment me on my upbeat upkeep! You know that made my day!

It is true that a majority of the patients up here on 5-N tend to stay in their room and when and if they come out at all it is for a few moments and they are not particularly "pulled together".

I had to push yesterday and give myself a big attitude check so as not to lose my warrior spirit. The extreme snafus in checking in on Tuesday created a situation where by my chemo will not end by 6pm and now is looking like 8:45pm. It is very difficult to wrap my head around the comedy of errors in the pharmacy which results in holding me hostage an almost three additional hours. Needless to say, I was major bummed.

I occupied myself with walking/dragging my tower partner around the whole fifth floor (2 sets of 5 laps) and some quad/hamstring work with my ankle weights....yahoo! Better than nothing,eh?
The Pilates mat work is on hold as my stomach under current circumstances, does not feel like being that engaged  ; )

Last night (Wednesday) My nausea and gastric pain issues started to escalate so I had an Ambien sleeping pill and a Adavan injection put into my IV line....whoohoo! Sleep came so sweetly and I felt like Dorothy when she could not go one step forward without slumbering in the Poppy fields..Great sleep until 7am and even though my mind is a bit fluffy my stomach (I am relieved to report) is doing much better : )

My focus today is to "Come out of the dark, come into the light".....Wizard of Oz....and get this day done!

It seems that they will make my next and LAST round start a week earlier so I will be FINISHED by the 26th of May instead of the set back date of June 3rd.......watch for the big balloon in the sky on the that day ; )

Come Out of The Dark Come Into The Ligfht......Wizzard of Oz

A Do Over

It is one week later and I am waiting at Moffitt for an available bed, so that I can begin the chemo round that I was supposed to do last week. I have learned from all of my past visits here, that Moffitt is Latin for: "...wait around for a very long time."

On the up side, my postponed treatment was a bit of a holiday from cancer. I had one extra week of feeling good and doing normal things.

The big event for me was going to my first Bikram Yoga class since this all began. 107 degrees, yeah baby! Of course my knee does not bend as much as it should to do the postures authentically, but it was awesome for me just to be there. Anyone who knows me well is aware of my masochistic love of this particular yoga practice and the studio where it is done.

So amazing to be back at Jeannine's studio amongst the very sweaty yoga friends who are a bit twisted like me!
It was one more piece of the exploded puzzle of my life being put back in its proper space.

My room is almost ready....or so they say (remember Latin...), and once again it will be "Cocktails at Moffitt." After this round I will have only one more to go. Trust me, my fingers and toes are crossed that there are no more bumps in the road!

Drum Roll........, The Envelope Please!

I received the excellent news from Dr. Letson and Dave Johnson the P.A.

Based on reading all of my test results they believe it is bone growth and not more cancer!

I am scheduled to resume my chemotherapy next Tuesday and go forward with the original scheduled treatment plan.

While they had me on the phone they discussed the plan to have me be a Sarcoma spokesperson at the fund raising benefit being held in Orlando at the end of May. I am even more motivated to do this after the past 36 hours of next step uncertainty.

I want to take this blog to thank all of you who have been following my blog and path down the Yellow Brick Road. All of the love and support you have given to me has kept my spirits high and my determination strong to make it through this big adventure.

I believe I am very close to making it back to my life before cancer!

Just Waiting.....

It is after 3:30pm and so far no news from the Moffitt team.

I had such an unexpected experience yesterday when I was going into the room for my MRI.
I crossed face to face with a friend/former Pilates client as she was leaving from her test. It had been quite a while since we last had encountered each other and my mind was focused on getting the MRI done since Paul and I had waited all day, and it was now after 6pm.
I did not recognize her at first, but she called me by name and said her name to me. I was stunned and when I asked what she was there for she informed me it was brain cancer!

I had noticed her earlier in the waiting area and every time she got up, a woman who turned out to be her daughter, was holding her hand to help guide her. I had thought she was having problems with her sight. When we met outside the MRI a nurse was assisting her and based on her recognition of me, I realized that it was her motor skills that were obviously impaired from the brain cancer.

I was so saddened and shocked that I had no worries about my own situation, just grievous concern for her and a deep desire to do something to help her! I spent the next 45 minutes of my time in the MRI scanner thinking only of her and wanting to find a way to emotionally support her. I hope that I can connect with her as we did not have a way in that moment to exchange any contact information.

Today as a result of this chance meeting I feel resolved to play out the next chapter and feel fortunate that the doctors at Moffitt are doing such an outstanding job monitoring my personal journey with cancer and feel strangely confident that I can go the distance!

I will blog again when I have news about my next step : )

A Change of Plans

Today I was scheduled to do my 3rd chemo round but instead I am waiting for a 4pm MRI.

Paul and I came here at 8am for my blood work, X-rays and CT scans followed by appointments with the P.A. Dave Johnson who was involved with my surgery to be followed by one with Dr. Conley my chemotherapist.

The news from Dave Johnson was that there is 'something' above my femur replacement which could be normal bone growth or more cancer. A MRI is the next step to get a clearer picture so the decision can be made by my surgeon, Dr. Letson, as to whether to do a biopsy or hopefully, it is nothing and we will resume chemo schedule next Tuesday.

So as I am waiting for this MRI I find it funny that I would be happier if I was doing my dance with the crystal tower instead of waiting for this new uncertainty. Life can be a twisted road at times without a clear picture of the travel time and exact arrival point.

Of course I will be blogging as soon as I have more news.....

Glimpses of Normal

This week has been the best one yet since my whole adventure began on January 5th when my surgery was done.

I have worked at my Pilates studio and it feels really great to get a glimpse of my normal life/routine returning. I am now confident that I will be able to work again during the two remaining chemotherapy cycles.

I have learned my energy rhythm now and know that if I wait one week after I finish the treatment I am basically good to go! A bit of down time now is more about resting my leg rather than my whole body.

Since last Saturday my energy has been surging.  Now I am experiencing the sensation of being my 'old' self before all my cancer symptoms started having their way with me last fall.

Now I wake up feeling that life is what is coming, not what was, and what is coming feels good and unlimited in potential.


"After winter comes the summer. After night comes the dawn. And after every storm comes clear open skies."    -Samuel Rutherford- (1600-1661)

I am looking with great joy into the clear open skies and am excited for the journey. Oh by the way... I am roaring louder than I ever knew I was able to and it feels grrreat!!!!!!

The Week That Was

Chemo Brain
I am happy to say that this week has been completed and is finishing well. It has been a week of the "chemo chick" experiencing "chemo brain" and all I can say is ....Big Wow!

If you remember the big rain storm on Tuesday morning you have the back drop for my stupid story on myself. I had been struggling since last Sunday to keep my mind and psyche afloat due to a weird chemical shift that made me stupid and basically depressed beyond my control.

So on Tuesday morning in this unpleasantly altered state I struggled out the door to my physical therapy appointment in advance of the storm. I basically lost my keys and phone while trying to get packed up in the car. My frustration won, so I opted to get the extra set of keys and forget about the phone. A few blocks away from home I braked and my "lost" keys flew off of the roof and landed on the hood of the car. Oops...jumped out retrieved them and continued on.  Wait, gets worse.

After my appointment I came home in the down-pour thinking about my phone and having the suspicious feeling it had been with the keys. Miraculously, I saw it in the middle of the street getting washed by the rain. The happy ending is that after being dried out, it is working again : ).
Thursday morning ushered in the return of a more pleasant me with my more normal brain and sense of self....the self that I know. I will spare the details of a multitude of small incidents and blues hat occurred over those four miserable days!

Riding 90 Days After Surgery
The big news is I can begin to ride a bike again as I have enough range of motion in the knee to clumsily push the pedal around. Paul took me shopping and I have a new ride. It is a step through frame (girl's bicycle) so I no longer have to do a leg swing over for "entrances and exits" on my rides like I needed to do on my now former bike. I am only riding in about 15 minutes at a time right now until my replaced knee joint can handle more. It is so great to see the potential for one more thing returning back into my life that represents normalcy. I am a regular Easy Rider in my fantasy world :)

Hearts in the Driveway Keeps Cancer Away

A wonderful Paul story....I returned home last Saturday afternoon to artwork in our driveway. His pressure cleaning turned into hearts he had painstakingly traced into the pavement for me!

This is the best simple "I Love You" expression a girl can get. Of course it must remain this way so I can be reminded how very lucky I am every time I come and go from home. Home Is Where The Heart Is!!!!!!!

Today was a "when you get lemons make ..." kind of day. We have so many on our tree so I made Limoncello, lemon sorbet and lemonade. Life is truly good and all I can say is what a difference a week can make : )

Cocktails at Moffitt

I am having my cocktail party, once again at Moffitt. It consists of nurses changing all kinds of bags on my tower with a little small talk involved...just no small bowls of peanuts and pretzels!

Paul and I met with the chemotherapist, Dr. Conley, yesterday before starting this round and it looks favorable the there will be only two more rounds and the 4th will be the same drugs and be three days long not four as had previously been projected. In short, he feels I did great on my first round and feels very optimistic about the rest of my treatments and long term success...good news for the home team!!!!

A cute story about my hair halo that was made from my harvested hair. This morning when I was being visited by the Chemo team of Tower 5 ( yes I am a princess in a tower) the senior woman resident asked the group and me...What kind of chemo is being done, if any? Look at her with all of that hair! I fessed up and showed her what was really under the bandana and we all laughed. She had never seen this before and was obviously impressed by the concept. The Virgo warrior felt empowered with the confidence I will need to weather the hair journey which will be far longer than chemo treatments!

Jean Weidner - Paul - Kathy

To close this blog I will comment on the fabulous 20th Gala for Sarasota Ballet. My mentor and founder of the ballet ( Jean Weidner) was extraordinary in presence and charm....she is truly a legend in her own time. Paul and I were honored to be seated with her to share in this magic evening. The full circle of returning to my dance roots in Sarasota made my coming back to do this round filled with even more purpose, and reminded me of this new dance that I have been learning and wanting to share with others.

Breaking Away

This weekend Paul and I went to Gainesville to visit friends and celebrate spring. Basically, for me it was a bit like a jail break from cancer and my ongoing recovery from my surgery on January 5th.

The idea came when we were walking around the neighborhood last weekend admiring the azaleas and feeling the joy of spring in the air. I had a pang of nostalgia for Gainesville where I had lived for 12 years prior to moving to Sarasota to dance with the ballet. The flowers are amazing there in the springtime and my astute husband did not miss a beat and said, "so, let's go!".

Ric - Kathy - Isa

My friend Isa from my dance years in Gainesville was thrilled when I contacted her and she insisted we come and stay with her and hubby, Ric, who I also danced and toured with. So with very little planning involved we escaped our current life with all of it's complications and hit the road!
This weekend trip made a huge difference in my current reality and also became a vehicle that transported me back in time. We visited not only the town but we all went to an ashram, Temple of the Universe, for a Sunday morning celebration and meditation. The man who began it all in 1975, Mickey Singer, is still the temple's guiding light. To put it in perspective to my past life, he was my neighbor for all of the years that I lived there and now owns and lives in the same house and on the property that I had lived on for those twelve years. He was not only happy to see me, he took the four of us on a road trip to see all of the growth and changes on the now vast property that is all part of the Temple and a tour of the house.
It was a treat to touch the space of my young adult years and I am now completely infused with a joy and light that comes from connecting my past with my present and realizing that there is no longing for what was, only a deep sense of peace and purpose to be exactly where I am today.

I am apparently glowing with the old twinkle in my eye when I smile according to our neighbors evaluation when they saw me, yesterday, after we returned home. I have more to smile about this week as I will have dear Susan from Boulder here with us and Friday will be the Gala to celebrate Sarasota Ballet's 20 years and it's founder, Jean Weidner, who was responsible for my coming here to dance. That fortunate move is what led me to meeting the love of my life, Paul.

Next week on Tuesday , when I return to Moffitt for round two of chemotherapy I will be rested and ready for battle with a clear vision of the finish line. I feel that now much of the bad part of my journey is behind me and the big adventure of the rest of my life in front of me! I do declare I just heard my roar!

The Mane Event!

Monday was a hard day, emotionally, for me. It was the day that my dear friend Coral and I had picked to cut off my mane of hair. I had found a company, while researching my wig options, called "Hats With Hair." I picked an option that allowed me to harvest my hair while still on my head to make a piece that I gan wear with hats and bandanas.

The comforting thing is that I do not have to lose the hair of my identity to the garbage pail....I will always have it.

Anyway, in order to do this, my hair had to be chopped to the scalp with no real cute style possibilities. It was basically the hardest thing I have ever had to do! My hair has been long for my whole lfe, so it was a life changing moment. Thank god it was shared with Coral and Paul! She was amazingly strong and held her tears as she put the scissors to work! We could have cried buckets, but somehow got through it all in reasonably good form!

Yesterday, I mailed the treasured locks off for my next transformation to get through this chemo battle! Fortunately, I have an amazing husband who understands my pain and temporary loss of confidence. I say temporary because he will not let me waver from the hero's journey that I am on and still have many more miles before it is completed!

Today I am ready to go forth with wigs and whatever it takes to wage my battle and then enjoy the spoils of war! I may appear different every time my friends see me now with all of the eclectic things I will be doing to hide my impending baldness.....but something will not have changed!

My Virgo Warrior heart is the same and there is no steering off of this path that I am on to be victorious! My growl is a warm up for the roar that I can feel coming back!

Home From The Battle

The chemo demon reared her ugly head, and for real she is the Wicked Witch! I am happy to say that I did my best fight but it was a tough day! All that I can say is that cancer is not a pretty thing. I spent most of the day and early evening until being sent home like I was in the Exorcist. At 9pm Paul got to take me home and it was like a homecoming I have never known. Just being back to the place I love best, with my boys, is the true "there is no place like home", feeling.

Happy to report that after a shower and a good sleep with all....(of course the faithful Labradors needed to snuggle in) I am in reasonably good shape considering what I battled through, yesterday. So far I have stayed away from the nausea meds, but will not hesitate to go for them if things shift in the stomach department!

I have until the 29th of this month to get ready for the next face off with the dreaded witch and to get my mew...sputter..sputter mew, back up to the ROAR!!!!

Star of Tomorrow!

I was going to take the day off from blogging today. My chemo is going just fine and so far I am feeling only mildly sick. I am getting my Tower dance down well enough to circumnavigate the 5th floor here at Moffitt for some exercise, which I did after lunch and then followed it with a much needed nap.

I awoke to a knock on my door, and in walked Dr. Letson with his team to check up on my leg.
Dr. Letson, is the man responsible for saving my leg and also doing the brilliant restoration after removing the cancer. Naturally, being the saucy Virgo Warrior that I am, I sprung up from my nap and performed the best two step that I could muster up with my unruly tower partner. He gave me a big hug and responded to the event by saying that he wished all of his patients were like me. Today is the first time he has seen me since Jan. 6th the day after my surgery.

After he examined my leg and saw the early post-operative results he was truly beaming as was I. So the exciting news is that he wants me to come to a golf and banquet fund raiser being held in Orlando early May as his star Sarcoma survivor/spokesperson.

Just when the days before me looked a bit long and dreary with the chemo regimen I received this unexpected surprise! Of course I said yes, and now he has his PA, David Johnson working on coordinating with Dr Conley (my chemotherapist) so that I can be off for the event.

An unexpected surprise for an expected quiet day!

Today, Virgo Warrior rose to a future star status in the world of Sarcoma....who would have guessed?

Moffitt Mayhem

It has been a bit chaotic since my check in at 2pm. Lots of staff in and out asking questions taking vitals and educating Paul and I what we can expect during this rigorous course of chemotherapy.

The craziest part was that soon after being in my room it was obvious that there was a problem with the electrical wiring. There was a lot of whirring noises in the wall and the lights were randomly flashing on and off. Meanwhile after my nurse, Gail, got my "plug and play" port system in my chest up and running, the pump of my tower was discovered to be non functional....actually, three out of the four pumps did not work. The working one began administering my IV fluids in preparation for the actual chemo to begin. They still needed to switch my tower out in order to start the chemo because three pumps are required to administer chemo plus fluids.
All this drama forced us to pack up all of my stuff in order to change rooms. I hoofed it to a new room with my tower as my side kick following Paul who had my suitcase as his. We indeed looked like immigrants arriving in this foreign land called cancer. Once there we waited for replacement pumps on the tower so that my chemo could finally begin.

I found it ironic in the Oz scheme of things, that as everything was flashing and whirring, it was like the scene when Dorothy and friends face the projected wizard humbled and afraid. Turns out that he is just an ordinary man behind the hidden curtain creating the illusion. I think my chemo anxiety was a bit like cowering in front of the all and powerful wizard hoping for mercy.

It is now an hour and a half into my chemo infusion and I have found my courage, just like the dear cowardly lion... At the end of this big journey I will be strong, proud and victorious.

Can you hear me roar?

Letting Time Go Lightly

The time is closing in for my dance with the Crystal Tower to commence....Tuesday morning is the big day so I am trying to keep myself focused and enjoy the time on this side of the rainbow that I have left before the anticipated trial begins.
Last night after dinner, Paul and I had a beautiful fire in the pit we have on our deck and simply enjoyed the gorgeous evening gazing into the fire, drinking our wine and listening to an impromptu serenade the creekside frogs gave us. In the midst of this simple but beautiful moment, I realized that this is precisely the reason I am willing myself to go through with this chemotherapy thing......I want many more of these nights!

So friends, I raise my glass and make a toast to letting time go lightly so the magic of life can shine through! Cheers : )

" Do not pursue the past.
Do not lose yourself in the future.
The past no longer is.
The future has not yet come."
-Lama Surya Das

Ten Points For The Home Team

According to my test results, ten points for the home team...Visitor, nothing!
I went back to Moffitt today and for a change received some very good news!
The CT scans are all perfectly clean and my blood lab work was good.

It appears at this time I am cancer free,  based on all visual test readings - also have good heart function and the x-rays show all healthy bone around my reconstructed left leg.

The chemotherapy regimen will begin on Tuesday (March 1st) to go after any micro metastasis that may be trying to take up residence in another location. My port was surgically placed at the end of the afternoon. I definitely am sore from the procedure and feel like someone punched me hard in the right side of my chest. Thank god for gel packs and pain pills...we have become good friends through these past weeks of recovery.

The photo was taken before my procedure, and I think the reason that I am smiling is because I was finally lying down and comfortable. It was a long day starting with a 6:45am departure from home and culminating with the 4pm surgery. Paul and I were very tired but happy when we picked up our boys from doggie day care and made it home at 7:30pm to chill!

Today, for me, was one of appreciation for the simple pleasure of being able to make this journey and recognizing that I have been given a great gift, a chance to live and fight. I will continue to make the good fight and to try and use every precious moment that I am given in this human existence.

Testing....Testing.....One-Two-Three

Today, I drove back to Moffitt, so that they could perform some tests in anticipation of my Chemotherapy. I am still adjusting to the fact it is going to occur, and soon! My fiddle...dee...dee avoidance tactic is soon to meet its expiration date! Yikes!!!!!

A CT scan was performed to see if any micro metastasis has occurred in my lungs since the last one done two months ago. Of course, I will not know until next Tuesday, the 22nd, when Paul and I go back to have a battery of blood tests, meet again with Dr. Conley (the chemotherapist) and get a port installed to administer the "goods.". They ran a nuclear test on my heart called a MUGA to have a baseline on my heart function before chemotherapy begins. This will be a reoccurring test during the course of my treatment. Tin Man listen up, according to the technician I do have a heart : )

What can I say but, "Today, was just another fun filled day.... In the merry old land of Oz!"

A Valentine's Day Walk

Valentine's Day 2011, will always be remembered by Paul and I because we had our first walk around the neighborhood with the dogs since January 4th, the evening before my surgery.

Yesterday morning, at the end of my PT session, I asked Stephanie when I could start doing some walking for exercise. She thought about it for a moment and told me based on my progress that I could try a quarter of a mile and see how it goes.

Naturally, I jumped on it and off we went yesterday evening before sunset to see our resident baby eagles, who will soon fly.

It was like a parade because our neighbors Marcus, Louise, their little ones, Bella and Kai, as well as Lori and Mike came along! It was so awesome.

Today! Paul & I met with the Chemotherapy doctor in charge of my case. His name is Dr. Anthony Conley and he comes from MD Anderson in Houston. We liked him very much, good thing, as the picture of what is to come with the chemo treatments is not a pretty one.

I will be getting more CT scans a heart test, blood work and then they will schedule putting a port in through which they will administer the toxic cocktail.
It looks like the first week in March will be the big kick off. Three days in Moffit home for three weeks for four rounds. It is possible I may have to repeat that three more times but that will not be decided until they see how well I hold up. It is a very aggressive chemo for this rare and aggressive cancer I am battling, so it also may have a bit of radiation thrown into the mix. Only time will tell.

For now, I am enjoying my improved strength and renewed joy of life that has come with it. The Scarlett O'Hara philosophy is what I am living right now about all of the rest to come....
"Oh fiddle dee dee, I will think about that tomorrow."

The Reality is Setting In

This past Wednesday, my dear friend Coral, met me at a wig store, to help me select my cancer disguise.  It seems ridiculous to be so tied to my vanity about my hair, when the real issue here, is about life and death. I wish that I could be one of the proud chemo patients who wear their baldness like a proud veteran of a war courageously fought but I cannot. My hair ties me deeply to who I am as a woman, and I shamelessly love it.

I did well getting through the selection and purchase but when I got to my car alone to drive away, I cried in dreadful anticipation of my great sacrifice to come.

On a day (not too far from now) I will let Coral cut all of my hair off, and I will be naked and weeping, with my treasured sacrifice at the feet of my enemy. My vow is this...... It is then that I shall rise up with all of my might, and battle mercilessly, my wicked avenger to her death.

In celebration I will finally be able to click the heels of my well worn ruby slippers, 1-2-3 and make my victory march away from this foreign and frightening land, back to the familiar path of my life, that I do love so much.

Friends please make a note...Bring lots of confetti!  No RSVP will be necessary.

Lessons In Spiritual Intellegence

This journey that I am on, has certainly caused me to search for my greater purpose, and to try to comprehend the essence of spiritual intelligence.

I read this quote and it helped me to embrace the lesson I am learning and to trust the process.

Nothing worth doing is completed
In one lifetime,
Therefore we must be saved by hope.
Nothing true or beautiful makes
Complete sense
Therefore we must be saved by faith.
Nothing we do, no matter how virtuous,
Can be accomplished alone.
Therefore we must be saved by love. -Reinhold Niebuhr-

My life has been humbled, and will be saved by the limitless love that all of my friends and family have infused it with.


Love, Peace and Joy to us all!

Better Living Through Perseverance

On Tuesday, I went to my 4th PT appointment and totally impressed my physical therapist, Stephanie, just by walking through the door with no cane and hardly any limp. I did new exercises and achieved new high levels of improvement on the exercises that I have been working on.

My knee bending ROM increased from 90 degrees on last Thursday, to 105 degrees on Tuesday. I have been persevering and pushing myself on my own at home, to return to normal leg function (ASAP) and I am so encouraged with my daily progress!

When I was working with Stephanie, one of the other PT clients was leaving and told his therapist that he would see him again on Thursday. David (the PT) responded by saying that he would be there. The exiting client replies, "Of course you will, you get paid to be here."

After the gentleman departed, I looked at Stephanie and said, "I feel like I get paid to be here, because the fantastic results are my paycheck." At least that is how I see it! : )

A Few of My Favorite Things!

This weekend was a lot of fun. We went to see Circus Sarasota on Saturday night and Sarasota Ballet on Sunday evening. I loved both of the performances. Circus Sarasota is always great....Paul and I never miss it, and of course Sarasota Ballet is my heart beat, as I have so many cherished memories of dancing with the company.

The really exciting part was that I went to both performances only using a cane and only needed it for minimal balance and primarily crowd protection. It is very liberating to be able to travel ever so much lighter now and to sit comfortably in a regular seat without needing to have my leg propped up in some unattractive fashion.

Care free nights out with Paul moving about with little effort.....definitely some of my favorite things these recent days.

I am building a great foundation of strength, fortified with the good times I am currently having to sustain and feed me through the next few months when the chemo begins. Oh, by the way, I am planning to keep the good times rolling despite the inevitable low times my dance with the crystal tower are certain to bring. I am looking to each sunrise as another day to live to love and to learn as much as I can from this crazy life in this unpredictable, wacky, wonderful world!

Day 30

Today it has been 30 days since my surgery and I just finished working out on my Pilates reformer that I have upstairs in our home. For my Pilates friends, you know what the intermediate system is, and that is basically what I did minus kneeling exercises. Even did the Teaser....yahoo!

I was awake for a few hours in the middle of the night, last night, and started thinking about my reformer and what I could do on it. I figured out with lighter springs and some gear changes that I could probably do quite a lot and I did. In celebration, I just took two Advil, and am communing with my ice pack....LIFE IS GOOD! : )

Last Night I Had a Vivid Dream.....

Last night I dreamt that the phone rang and in my dream, I walked through our living room and up the two steps into the kitchen to answer it. It was a sensory dream, because I really could feel myself walk as though none of my current issues existed.

During my ballet career, I used to have these types of sensory dreams, when working on particularly challenging choreography. Oddly, I still experience these dreams of rehearsing and I have the organic experience in these dreams that I am back seventeen years in time, physically executing complicated ballet steps.

Today, I went to my third PT appointment and after doing thirty minutes of different exercises to challenge my leg strength and ROM (range of motion) I practiced walking without my crutch.
The more that I focused on my movement the more natural it became.

When I arrived home after doing an errand I went to Paul to "show off" a bit. With determined focus on my stride, I walked around the house(no crutch) with hardly a trace of my post surgery, stiff legged limp!
Paul, was absolutely blown away and amazed by my "performance".

It is now a few hours later, and I am sore, leg elevated with an ice pack, but so encouraged that I lived my dream of walking normally.....well let's just say, close enough. It will take lots of work and unquestionably plenty of back slides, but now I not only think I can....I KNOW I CAN : )

Back to life

Today, I feel back in my life, and it is certainly great. This past weekend Paul and I went out with friends, entertained and went grocery shopping together. Life on a normal basis that is so easy to take for granted until you suddenly get pulled out of the game.

This morning, I drove myself to my PT session and then surprised everybody at Pilates with my appearance. It was wonderful to be there with Sherry, Michelle and all of my client/friends, who I have missed so much. It is the first time since New Year's Eve (the last time I was there) that cancer and recovery did not seem like 'The Main Event.'

Friends and daily life go on like a river's current and today I cast my little boat and enjoyed the ride.

Getting a Clearer Picture of The Dance

After My visit to Moffitt , two days ago, I got a bit more insight on what is to come. I will find out Friday if I will be having radiation therapy. If that is the case I will have to complete that before they will begin the chemotherapy treatments.

The cancerous tumor removed was an Osteosarcoma, very high grade and aggressive. The good news is that they removed it intact, so there is no cancer left where it all began. The chemo is to get any cells that may have already been released and prevent them from causing cancer in my lungs which is the common outcome of this rare type that, was positively identified in the pathology, that was done after the surgery.

Once the radiation decision is made, the planned chemotherapy will be scheduled. The team work at Moffitt is truly a well choreographed piece that will be set on me so that I can have my dance with the crystal tower. I have seen others moving and or being moved about at Moffit with these intimidatingly large chemo towers and that is what I have named them.

Anyway, I will be connected to my crystal tower for five days and then come home for two weeks to prepare to have another dance. This schedule will be either 4 or 6 times and then be finished. If I can stay strong and battle ready, I can complete this tour de force in three months. Meanwhile I will be doing the PT as well as I possibly can, considering the rigerous schedule of tower dances and recovery. My goal is to be finished with chemo and walking normally simultaneously. I guess my Ruby Slippers will be my dancing shoes as they lead me back to the old familiar body I long to call home once again.

The Path has a Name.....Chemotherapy

I have been waiting to find out what the path is, that will lead me back to the road I need to travel in order to return to the place I was, before this cancer saga began. The path is chemotherapy, and it will be well worn with in patient treatments at Moffitt for 3-5 days at a time.

Dr. Letson spoke with me on the phone this morning to prepare me for what is to come. It will be at least six months of going every three to four weeks to be infused with a very special cocktail just for me.....not as much fun as Cosmopolitans, I do dare say, but a life saving elixir that will make me a "real girl" again! My image is that I will be washed clean of the cancer and forever changed by my renewed strength and appreciation of good health and the simple pleasures of life.

Hellen Keller said that life is either a daring adventure or nothing. I dare to make this a very big adventure and I will be honored to share it with my friends and family and try to keep my complaining at a minimum : )

I expect my friends to hold me to this pact!

Caught between wanting more and settling for rest!

As I am getting stronger, I am also beginning to desire to move around more. Yesterday, I tried being up for longer periods of time, so that I could aimlessly wander around the house.

Because my knee replacement is a bit different than a traditional one, I am more restricted at the rate at which I can work on getting functional range of motion. As a result my exercises are very limited and I am not to work in a place that causes too much pain. Since the surgery removed my ligaments, part of my thigh muscle and a bit of a hamstring on outer side of the knee I have to respect the healing of the internal surgical work so it will all eventually function together to allow me to walk normally again.

The really fun part is the rigid brace I must strap on any time that I will be weight bearing. The brace goes from the very top of my leg to my ankle and it is tightened by Velro straps. No matter how well I believe that I have tightened it, the sucker always ends up sliding down so it can gouge into my ankle bone and Achilles tendon. When I sit down ( left leg held in a straight position ) the back of the brace digs into the very back of my upper thigh because all of the structural boning, which is rigid plastic, can only dig into me not meld with me!

I have been able to figure out a way to sit with my leg resting on a chair so Paul and I can have dinner in our dining room. It is by far the most civilized time of my day. Paul makes the table pretty with lots of candles. We eat fabulous food, thanks to the amazing generosity of so many friends, drink wine and talk. It is our own private little romantic restaurant.

I read a quote that basically promotes starting a new religion with one commandment, "Enjoy thyself."

On this challenging journey to return to health and wholeness I will try very hard to follow this commandment!

Better every day

I am happy to report, that I am feeling better every day. I was just starting to question whether I am just passing the time existing and healing but not doing anything important.

Just read a quote:
 "There is no such thing in anyone's life as an unimportant day."

      -- Alexander Woolcott.

I feel good about what I am doing now!  :  )

Took the day off

After trying to be tough, recover from surgery and adjusting to my new way of ambulating I took today off. My love, Paul, set me up to be able to get all of the media I could ever want, so I have been totally relaxing,watching movies and everything else my heart desires. It feels great to just be! I have holed up with my two trusty Chocolate Labradors, Tucker and AJ laying watch in bed with me, while Paul has worked from his office here at home. Pure peace and quiet.....AH!!!!!!!!!! Or should I say OM !!!!!! ??????? Anyway, Life is good ;)

Now the real work begins!

Sunday, yesterday, was my first full day home, and I felt a peace an inner joy like I have never before experienced. I could feel my aura glowing and I know it was because that dreadful beast who had been holding me a hostage, had been slain, and I could feel the real me once again.

I now feel a childlike sense of calm mixed with a warrior spirit to begin the long road to being strong and healed. I am humbled and grateful to have been given this miraculous chance.

Lifted up by all of the love that has been channeled to me by all of the amazing people who make my life have purpose,I will start my baby steps on the path to a full recovery! We figured out yesterday, that Kate ( our neighbor's 8 month old baby) and I will be walking at the same time and that really makes me smile :-)

Strange Transition

Yesterday afternoon the transition from PCA to pills was not a smooth trip, to say the least! Everything (including antibiotics) went from IV to oral and I had a tornado of nausea rip through my body.

The need to start a new IV came a reality but for awhile it was not happening. I think my veins had closed up for business. So after a few nerve wracking and painful attempts one was in place and anti-nausea medication put in.

The reaction to that was like Alice In Wonderland and I was trying to talk to images of people walking into my room through the walls. My friend, Susan, sat with me as I spoke in nonsensical sentences struggling from being pulled into the goulish party that seemed to be coming in and out of the room as they damn well pleased.

At 5:30AM I woke up in a sweat but also with the conviction to take control of matters and save my sinking ship! I refused any more anti-nausea meds, got a pain med down (I was 'way' overdue) due to the stomach rejection and slept a couple more hours.

I woke up thinking about the song "If we ever get out of here" and said yes and TODAY!
So here I am with walking papers for afternoon discharge, a trip around the hallway on my crutches and with a bit of food accepted suspiciously by my stomach.

Saving the best for last.... big bandage off, drain out, and I can see my thigh and side of knee with no tumor. The evil dark alien is gone and my leg looks pretty darn good (especially when I know how close I came to losing it). My prince Paul will take me to home sweet home to kick off my ruby slippers and have the joy in my heart that I have returned to rest and awake ready to carry on with the rest of my journey.

Private nurse is on the way !

My dear friend,Susan, who is just finishing Nursing School is flying in this evening from Boulder to spend a few days with us. Girl's slumber party at Moffitt in my room tonight as she will be taking over Paul's cot.

I think I will nap a bit now.... She is just a few months shy of being an officially certifiable RN. After seeing the unselfish work they do, I would think they need someone to treat and take care of them  :  )

Friday 100-Yard Dash

Time: 2:15 PM EST

First Kathy decided to impress both Christine the PT and I with a 45-degrees knee bend sitting on the side of the bed. PT said on word: 'Wow.'

Then (yes Dr. Letson we put the leg brace first) she got up, with the help of a walker, PT with safety belt in hand, and walked four times the distance she traveled the day before.

That is between 2 blood transfusions,  of course.  Now she is quietly resting waiting for the pain med to alleviate the excitement of an extraneous activity extraordinarly done according to Christine.

A little of rest now before the next activity: wound drain removal.  Getting closer to home, one slow step at a time.

- p a u l

Spa Day at Moffitt

Currently getting some blood transfusion so I guess this would be a spa day if I were a Vampire...hmmm....another chapter in the Twilight series?

They removed my catheter this morning and I guess it pushes some air up inside you, so  once it starts coming out for the first few times that you pee,  it sounds like you are playing a Kazoo. It is especially amplified by the fact you are balancing on a bed pan. Just some of the charm and beauty of a hospital stay.

The chances are looking in favor of me going home tomorrow. That is, if, my pain stays manageable after the PCA (Patient Controlled Analgesia) pump is removed. I have become quite 'attached' to the little device which makes you 'high' on demand.  : - )

How to Follow Blog and Leave Comments

Many of you reported having problems leaving comments or following this blog. Looking into it I see why.  No worries, find below a quick how-to.

Step One:
To leave comments or follow a blog on BlogSpot.com (owned by Google) you need to be registered and/or signed in.  There are different path to do so.  Clicking the 'Follow' button is the quickest and simplest.

Note: 'Follow' does not mean you will get email alerts as you do with other web applications such as Facebook or else. It just means that this blog will show on your Blogspot dashboard.

Step Two:
After clicking the 'Follow' button you will get a pop-up, shown here left. You can either sign in, if you have one of these accounts, showed by the red arrow, or, create a Google account, showed by the blue arrow.

After you have done either, go back to blogspot.com - you might have to sign in again.  Now go to edit profile and add a picture - we all want to see your pretty face, then choose a display name that separates you from the pack, especially if your profile pic is your cat or something.

If you still have problems or need help, just send me an email.  Don't have my email handy? No worries, just Click Here fill the form or call the local number. Either will be routed to me.

- p a u l

A very close call !

The reality of yesterday's surgery was that Dr. Letson almost had to amputate my leg mid-femur. Yikes !!!!!. The tumor had grown around a nerve and was so large and intertwined with blood vessels and quadriceps muscle not to mention one of my hamstrings connections behind the knee. He painstakingly cut away at it and was able to remove it whole!

The other issue was my foot and how it would function after the removal.He had great reason to believe I would have a dropped foot with much of the function lost. He was so happy to see me this morning pointing and flexing it and with full feeling. Paul had posted this last night but then deleted later as he was not certain as to if it would totally freak me out.

How lucky I am to have such a skilled surgeon as I fear the leg would have been lost with a less experienced and gifted doctor.

Actually, this information boosted me up so that in spite of all of the extremely harsh pain, I am now truly believing in the power of love and pure energy that has been wrapped around me to carry me into a sort of rebirth and awakening. Thank you my dear friends for this remarkable gift.

Post Surgery Meeting - 1/6 - 3:15 PM

The meeting was very short.  A little after 3PM they came marching in all at once - Dr Letson and his medical team in tow.

All 8 of them entered smiling, their pride palpable. Pride not also for their own incredible work, but for the earlier stellar performance of one their most valued player - our Kathy.

I wish you all had been here when Kathy, from her drug induced state, with quasi childlike voice, reassured Dr. Letson that her first steps on terra firma, since her surgery, would have been better and faster had she not been attached to so much stuff.  There is indeed a "lot" of stuff attached to her. Everybody, I mean everybody in the room just cracked up laughing.

The laughter was interrupted by Dr. Letson: "You're going home Saturday, you're doing great!"

Just 24 hours ago I nervously parted from my wife of 17 years, letting her go to the greatest challenge of her life, while I,  for the longest wait of mine.  And today, she's a stand-up comic....  Again, you can't make that stuff up.

- p a u l

First Steps - Jan. 6 11:30AM

First Steps!

Taken a little before lunch. That is a just a little over 12 hours after surgery.

The charming lady in the pix is the OT.  Her last word after seeing Kathy's performance (I could not believe my eyes...)were: "You will not require any occupational therapy. It was nice meeting you." 

She walked

You can't make that stuff up!

Of course that took a lot out of her, so now she sleeps hugging her stuffed Panda bear.

 - p a u l

Click Here to See More Pix

The stomach speaks

After almost 48 hours since my last food I was happy to have breakfast to fill the empty pit.However, my stomach was not in sync with my desire and soon into my meal.I discovered tummy was plotting a food fight and it would have, unquestionably, won! I think graham crackers and a little vanilla ice cream is the meal plan du jour.
My surgery was even bigger than expected, so I had much more muscle in my thigh and exterior of hamstring removed making pain management more daunting......and causing extra yucky gastric issues.
I cannot say enough about the excellence of care here at Moffitt and by my "wing man" Paul
Who is watching over every detail and cheerleading me on.

Breakfast - First Meal at Last

Breakfast!

Moffitt Cancer Center - Tampa -  6/1 10AM.

Kathy was very happy to get her breakfast this morning. First solid food since Tuesday 9PM.

We had a decent night sleep considering all the necessary interruptions.  

I am pretty sure the next blog post will be from her.

Dr Letson was just in the room just to say 'hey'.

- p a u l

Kathy in Her Room

 

This is Kathy when she just got in her work last night (5/1).  For some reason blogspot was not letting me post last night.

I was so impressed, and relieved to see how great she looked, just 90 minutes after her surgery which was much longer than anticipated.  Today (6/1) at 2PM we're meeting with  Dr Letson and the entire team to assess, review the protocol until we get the results from the pathology in 2 weeks.

- p a u l

Recovery Room

MCC - Tampa - 9:45 PM EST
What was suppose to take less than an hour took ... longer ... loosing track of time here.

Second team came out of the O.R. to brief.  The reconstruction went really well. So happy!
Kathy in is the recovery ward and I am waiting for the nurse to come and get me.

Again, I will keep updating this blog until we get her to her room. So poor another glass, I'll be back.

Thanks for the support guys!

- p a u l

Surgery Almost Done

Moffitt Cancer Center - Tampa - 8PM EST.

The surgery is wrapping up.  Should be done within the hour.  Dr Letson came out to update me on the success of the surgery while his partner is finishing up.

But she is fine I was assured. So she is safe and confident she is receiving the best medical care by
an amazing medical team lead by Dr Letson.

I will post another update when she is safe tucked in her room.

- p a u l

Kathy off to Surgery

Moffitt Cancer Center - Tampa - 4:15PM EST

The surgery was delayed but everything is working according to plan. We had a great pre-op meeting with Dr. Letson.  The entire team here worked really well at making her comfortable and ready.

My dear wife wanted to leave everyone today with a wink and a smile and say: "I will see everyone soon!"
She would like everyone to have a good evening, have a cocktail or something and not to worry, that everything will be just fine (sounds like someone you know?).

And now she just went - for her next journey.

I will update as soon as I have more.

- p a u l

Drum roll...

I have the surgery time confirmed by Moffitt and it will be at 1:45 pm tomorrow.  If all goes well, I should be in
recovery around 5:30, so at that point Paul will be taking over my blog to keep everyone informed as to how things went and are going.  He is planning on staying in my room tomorrow night to comfort and protect me.
He is a keeper ;)

Standing vigil

I am awake at 3am standing vigil over myself to see how I am truly handling all that is soon to come.  Surprisingly, as I stand this watch, I can feel the strength of the deep seated instinctive desire that is in me to make the good fight.
As my hands begin tightening up on the reins I realize that I have become the warrior and I am ready for battle and victory!

Keeping on track

With the last of the New Year's celebrations and reflections in my rear view mirror, I am looking ahead to Wednesday.  It is going to be a bit daunting to pull all of my courage and common sense together so I
can go under the anesthesia with a sense of calm resolve and hope for much better days to come.
I know this is a true hero's journey that only I can make.  My strength rests in knowing that so many friends
I love are there for me, cheering me on to make the good fight.  My amazing husband and "wing man", Paul
will be my protector, keep me standing when I stumble (certain to be a lot of that) so I will be able to cross the finish line victorious, enlightened and forever changed as a result.  I guess my big adventure will also become one of my biggest lessons....the school of life keeps giving us those flipping pop quiz tests just to see if you have been paying attention!