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.
Wednesday, January 26, 2011
Friday, January 21, 2011
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!
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!
Sunday, January 16, 2011
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!
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!
Thursday, January 13, 2011
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! : )
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! : )
Tuesday, January 11, 2011
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 ;)
Monday, January 10, 2011
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 :-)
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 :-)
Saturday, January 8, 2011
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.
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.
Friday, January 7, 2011
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 : )
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
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. : - )
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
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
Thursday, January 6, 2011
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.
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
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.
Of course that took a lot out of her, so now she sleeps hugging her stuffed Panda bear.
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.
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
Wednesday, January 5, 2011
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
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
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
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
Tuesday, January 4, 2011
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 ;)
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!
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!
Sunday, January 2, 2011
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!
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!
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