Sunday, July 25, 2010

Blog on Vacation

Wonderful news...no news to report once again. As such, I think it's time to return the blog to the storage shed for the time being and hopefully forever.

If the blog is rekindled, perish the thought, Cindy and I will inform everyone via Facebook and personal contacts.

The administrators of this blog, my fantastic brother and sister-in-law, Rus and Amy Van Westervwelt have been suggesting for quite some time that I should consider sharing our experiences and life lessons over the past several years related to battling cancer and our fight for Cindy's survival.

After a great deal of deliberation, I have agreed to both consider the idea and, finally, commit to the project...so off we go. The mission will be to provide a positive perspective to those about to undertake this unfortunate journey.



Thank you to all of you for everything you have done...which includes your love, friendship, compassion, support, gifts, comments and questions. I hope the blog provided you, in turn, with much of the same. In truth, it helped me more than you could know as it allowed me to communicate our trials and tribulations in a way that I did not feel as if I was a burden to anyone.

I will be checking the blog on occasion in case anyone has questions, comments or suggestions (regarding Cindy, myself or the upcoming book). We relish all feedback and wish to stay in touch.

With that said...adios for now.

Rob & Cindy...actually, more appropriately, Cindy Lou and Rob

Wednesday, July 21, 2010

Legless in Orlando

Our insurance company denied our claim for Cindy's $32K leg because they don't approve computer chips in knees. We are appealing. Hope it goes through or things could get expensive.

Monday, July 19, 2010

Progress Report

Cindy returned to work today. It went well.

It's a slow road back to normal...but at least we are moving forward.

Saturday, July 17, 2010

Quick Saturday Night Post

Cindy is doing better each day. The pain is lessening and she is becoming more mobile.

All is good!!!

Friday, July 16, 2010

Visit To Moffitt

Kyle took Cindy to Moffitt yesterday (I am running out of days off...). Great news! They removed the staples and everything is healing according to plan. No sign of the infection, but Cindy is still taking daily IV antibiotics so it is a bit too soon to ge overly excited.

The pain in Little Lu (amputated leg) and hip (from the surgical procedure) are subsiding.

Having Kyle home has been a blessing. He built four wheelchair ramps for Cindy so she can be more mobile around the house.

Cindy is not ready to begin working with the prosthesis again, but she is beginning the early stages of preparing to do so as she was advised to start wearing her shrinker again. A shrinker is a devise she wears on her amputated leg to shrink it a bit so the leg will fit comfortably into a prosthesis when she begins to wear it again.

That's it for now. Sorry for the delay in the updates, but things have been crazy these past couple of weeks with all of he visitors we have had.

Wednesday, July 7, 2010

Wednesday Update

Great news! Not much to report. Cindy had a good day with minimal wound issues. It is still leaking, but not as bad as it had been in the past. Her blood pressure is normal and all else is going well.

Kyle & his future bride (Kristen) grilled for the family tonite. Kevin & Katie, Cindy and I, and my parents loved it! Katie made an incredible couple of desserts. There is nothing like being surrounded by family to assist with the healing process.

Tomorrow, Cindy has a doctor's appointment. I will provide an update later in the day.

Have a great Thursday!

Tuesday, July 6, 2010

POST JULY 4TH UPDATE

What a week it's been and what a week it will be!


Kevin, our son from Afghanistan flew in last week. We treated him, our daughter-in-law, and her mom & dad to a holiday weekend at the Palm Island Resort. For Cindy & me, this was our 5th visit to the beach there so you can see how much we love it there.


We faced two major obstacles while there...the first was that it rained throughout the weekend. It didn't just rain, it poured much of the time! It cleared up just long enough for us to go down to the beach and get some beautiful sunset pictures. Kevin captured an amazing shot which we will soon add to our collection hanging in the house. We also got to see some terrific fireworks displays on the beach. 


The second major challenge was that we had a 2nd floor 3-bedroom apartment which really meant we had to climb three flights of stairs because the first floor is actually 10 ft off the ground to avoid possible storm surge. Since Cindy cannot walk with a prosthesis yet, it meant we had to figure out a way to carry her up and down the stairs each time we wanted to go anywhere.


Our initial attempt was for four of us to try to carry her in the wheelchair. Unfortunately, the staircase was too tight for us all to do that. We then took a lounge chair off of our patio and had her sit in that. Kevin grabbed one end while I grabbed the other and we carried her up and down the steps. It turned out to be very successful...except for the fact that Cindy made it VERY difficult for us. She would start giggling each time we began and would get us laughing. We almost lost her when we were almost at the top of the 2nd flight of stairs, tired and straining, and she announces "Jesus, take the wheel!". She almost went crashing down 3 flights of stairs because we began laughing so hard.


As for Cindy's medical condition, it was mostly good news. The moment we were leaving for the beach, Cindy found her wound had opened up and had been bleeding rather badly. We almost canceled the trip. Fortunately, we were able to get in touch with our good friends at Moffitt and they instructed us that it was okay to go and how to care for the wound. For the most part, things went smoothly during the trip, with only a couple of times where the wound and the pain became a bit overwhelming for her. Otherwise, it was a great time!


The rest of this week will be planning an engagement party for our other son, Kyle and his fiancee, who some of you who work at the American Cancer Society with Cindy know very well. For those that don't know, Kyle met Kristen while visiting Cindy there last August when he was on leave from Iraq to attend his brother's wedding. Funny how things work out.


So now we are back home and Cindy continues to follow her antibiotic regimen and wound care. Kyle, arrives from his base in Germany this evening and my parents arrive later in the day. Other immediate family members and Kyle's close friends will begin trickling in as the week comes to a close. We anticipate a very full house!


It will be a busy week, but I will blog often as I am on vacation until next Monday.


Have a great (work)week!


Rob

Thursday, July 1, 2010

Thursday Update

Cindy is doing better every day. She is taking her pain meds to stay ahead of the leg pain. The only down side is that they make her a bit loopy and causes her to have insomnia most nights.

She is taking a new version of the IV antibiotic that is much easier to use. It's terrific!

Tomorrow we go to the beach for a few days with Kevin, Katie and her parents. It will definitely be challenging for Cindy as we will be on the 2nd floor of a walk-up so we will be doing some carrying to get her up and down the steps.

Because the rooms do not come with wifi access, I will not be able to provide progress reports until we return. However, there will be lots of pictures to share (I hope).

Cindy's mental state has been fantastic. Now that Kevin is home on leave, every day has something exciting planned. Additionally, Cindy has been enjoying her new "grand-dog" Paisley. We have never met a dog that melts us the way she does. Other than the rediculous ribbons in her hair, she is a very cute dog.



We will check back in after the 4th. Have a fantastic holiday weekend!

Tuesday, June 29, 2010

Cindy's Best Day Yet!


How is Cindy feeling today? Much better! We ALL ARE!

This is a picture of Kevin with the Delta employees who made his arrival home VERY special!

Cindy made friends with the person on the right. She had the person on the left call the pilot, go down the gateway and made sure Kevin was the first off the plane. She escorted him arm-in-arm until Katie broke into a sprint down the jet way to meet him. When they came through the gate, everyone gave them an ovation!

This is a memory we will never forget. Katie's mom captured it on video. I will try to post it soon.

Monday, June 28, 2010

KEVIN IS HOME FROM AFGHANISTAN!!!

Cindy was able to go to the airport to meet Kevin at the gate. It was very emotional reunion. Cindy made friends with the women at the Delta gate and as such, special privileges were provided to us. Katie, her mom and I watched Cindy do her thing...

One of the women working the gate informed the pilot that Kevin was on board and we were waiting. He announced that Kevin is a special guest and he deplaned first. The Delta employee went down to escort Kevin to us. I will try to post pictures in a future blog.

Needless to say, it took it's toll on Cindy. She is wiped out, in some additional pain and, unfortunately, is beginning to run a low grade fever. We are praying that it is from the excessive activity and not a sign that the infection is kicking in again already.

I will provide an update later today, though my son and I have some catching up to do...which may included an adult beverage or two :-)

Sunday, June 27, 2010

When Will We Know If The Infection Is Gone?

A year from now!

Why? Because the head of infectious diseases at Moffitt explained it to us this way...

The infection can actually hide from the IV antibiotics, which Cindy will be on for the next 6 weeks.

If the infection doesn't appear during that six week period of time (which it still might), it does not mean it has been destroyed. The infection can begin to grow slowly inside the bone. If that does occur, it will likely re-appear within the next three months. Then again, a few strands could grow very slowly before they begin to become aggressive.

Therefore, it could be as long as a year before we can rest easy that the ordeal is over.

Again, this strain of infection is not deadly. More surgeries and further amputation of the leg may be required, but at least it is not life threatening. 

Now that we all know the possibilities, please know we are not going to concern ourselves with what may be. Our focus is on that which we can control...enjoying each day. Worrying changes nothing, so why worry?

Have a great Monday! I know we will!!!

Home Sweet Home!

We woke up in our own bed! What an amazing feeling to get a good night's sleep.

Cindy is still having pain in her leg (which is to be expected) and her throat, (which is NOT to be expected). Her spirits are great and she is more alert than she has been in four days (it was getting old watching her sleep all day). We will be visited by Mark, her home healthcare nurse this afternoon who will administer her IV antibiotics, and the Privara family (daughter-in-law Katie and our extended family: her mom & dad), who did an amazing job decorating the house with welcome home signs and flowers. We truly appreciated it!

Today we are beginning to plan...for Kevin's return, for our mini-vacation which begins on Friday, followed by my parents visiting, Kyle coming home and my brother and god-son coming down to see the boys and their brides (present and future). It is such a great feeling to have pleasant things to look forward to for a change.

Cindy's eneregy level is weak and any movement hurts her leg, but otherwise, she is doing better today.

Saturday, June 26, 2010

We're Home!

Home never felt so good! Yes, we are here.

Arrived to a nice surprise. Our daughter-in-law, Katie and her mom had signs up in the house welcoming Cindy home, and we noticed the house had been vacuumed, as well! I can't tell you how wonderful that was!

Cindy is on less potent pain meds so, as yoou imagine, she is experiencing more pain than she had in the hospital. Her BP (not the dreaded oil company, but her blood pressure) came down a bit again, but she is not feeling any of the symptoms that accompany it being low so we are not terribly concerned.

The PICC line is apparently not working as hoped, but we are keeping our fingers crossed that it won't prevent Cindy from receiving the IV antibiotics that begin at home tomorrow.

The best thing about being home? We will get a good night's sleep for the first time since Wednesday. Sleeping on a cot with nurses and techs coming in every two hours makes for many a long night.

Tomorrow we will reassess and see how Cindy will be doing on her first day home.

Thanks to everyone for you kindness, love and concern...and to all those who lent a hand to make our "adventure" more tolerable...a special thank you.

More to come tomorrow...

We Are Coming Home!

Not sure what time we will finally be discharged, but it has been confirmed that we will be spending the night in our own house!

Great news!

Not Sure We Are Coming Home Today

It appears that the PICC line is not functioning properly so we have to wait to find out if we will be released today.

The pain remains in Cindy's leg and throat, however, there is mild improvement.

I'll provide another update when we find out if we are going home or spending another night here.

Friday, June 25, 2010

Just Finished Last Activity For The Night

As Cindy always says, she's special in a bad way. Today, they were unable to successfully insert a PICC line so it had to be done in radiology. After an hour of trying, they were moderately successful...hopefully enough that it will work well once we are home.

Now for the good news...her bp is back to normal and she is no longer running a fever.

The pain is still significant, but Cindy has a high threshold for pain so we will see how it goes.

Hopefully we will be released to come home tomorrow. The minute we are released, only good things are planned. We can't wait!!!

Friday Morning - Promising News...

The best news we received this morning is that it appears Cindy's blood pressure levels have risen. They are not there yet, but they are climbing toward the normal range.

She continues to run a fever, but there is little concern over that as Tylenol can always knock down the temperature.

Cindy is still experiencing a great deal of pain in the leg, and much to our disappointment, her throat. Clearly the anesthesiologist did a horrendous job of inserting the tube during surgery.

Physical therapy went well as Cindy doubled the distance she covered with use of a walker.

On tap for today...a Pick line will be inserted (this is a painful procedure) so that Cindy can receive IV antibiotics while at home.

Though nobody has told us one way or the other, I can't imagine us going home today.

Cindy continues to sleep most of the day, but her breathing is getting better and she is able to talk when she is alert.

More to follow this afternoon.

Can't wait to get home!!!  Can't wait to see the boys!!! Can't thank everyone enough for your caring so much for my bride!!!

Thursday, June 24, 2010

Evening Update

Not much new to report. The blood pressure issue continues. No answers yet as to what it may be. The great news is the EKG is normal. They are running more tests to see "what's up" (that there is medical terminology!).

Cindy's spirits are good but she is still very groggy. She is eating a bit more each meal and her personality is returning when she is awake.

I'm keeping my fingers crossed that they will not be sending her to the ICU like they did previously when this happened. That said, obviously I have no idea when we will be going home, but I am fairly certain it will not be tomorrow.

Progress Report

Tylenol brought down the fever...Cindy's EKG is normal...the blood pressure is still low.

Thursday PM Update

As is the case during hospital stays, it's a revolving door into our room. It seems that the activity never slows down.

Here is the uncut, bullet-point version of what has taken place thus far:

Overnight: issues continued with pain. Little sleep for either of us. Cindy had some breathing issues that made it difficult for her to talk. That issue continues throughout the day today.
7 a.m. - Christine, our friendly physician, stopped by and surprised us with breakfast from McD's.
8 a.m. - Physical therapy: Cindy used a walker and made it down the hallway. She got shakey and got a ride back to her room. They have her sitting in a chair rather than laying in bed the rest of the day.
Morning - Cindy's throat is doing a bit better. The leg pain is being controlled better today than yesterday.
Afternoon - The head of Infectious Diseases came by and explained that they won't know for about a year whether they were able to rid her of the entire infection. They will get a sense of if they got it in about 3 months, however they will have Cindy on 6 weeks of IV antibiotics. He hopes that will help, but there is no way to know for sure. The doctor assured us that it is not life threatening. The worst case scenario is that they will have to amputate the remaining femur to rid the infection from her body, but he does not anticipate that happening.

As has happened in previous surgeries, Cindy's blood pressure is now dropping to a level that is causing concerns. The first remedy is that they will give her a blood transfusion to elevate the numbers. We expect that to occur some time soon. Nobody is in panic mode, but they ordered an EKG as her pulse is a bit "thready" according to a physician that just looked her over. Again, nobody is overly concerned, but they are taking a cautious approach based on past history.

Cindy is drowsy and sleeping most of the day today, which is very much needed.

We heard from Kevin in Afghanistan, however, Cindy was not able to say much due to her breathing issues. It was great that he called.

I'll update again later...

Rob

Late Night Update

Sorry for the delay but we had a few stumbling blocks along the way...mostly involving pain and pain meds (or lack thereof).

Cindy spent a great deal of time in recovery as it took a bit longer than normal for her vital signs to return to a level that allowed her to be released to her room. This is not unusual for Cindy following surgery so although it was a bit disconcerting, it is nothing like what we have experienced in the past. Some will remember her flat-lining, blood pressure dropping, nights in the ICU, etc. Fortunately, none of that has occurred this time.

It is now midnight and Cindy is finally sleeping soundly. The pain was intense, not just in the leg area, but in the throat. It appears the tube they put down her windpipe during surgery caused a great deal of discomfort afterwards. And, as in the past, the anesthesia seems to have a negative impact on Cindy.

So that is it for tonight. Today was a very long and trying day. Hopefully, tomorrow begins the healing process and each day will be a bit better than the last.

Namaste! (Sorry, I couldn't resist my favorite salutation from LOST).

Wednesday, June 23, 2010

Just Got Called to see her

Will be with Cindy in recovery for about 45 minutes, then we will be going to room 318. More once we settle in.

Wed. 3:45 pm: Good News!

I just met with the surgeon and our friend Christine, who was in the operating room with Cindy. Both said the surgery could not have gone better. The other surgeons are in the process of finishing it up so she is about 20 minutes from going to the recovery room.

Big sigh of relief! She got through the surgery and her blood pressure was normal throughout.

The foreign body (cement that had held the titanium leg in place) was removed. It was much bigger than they thought and more difficult to remove than anticipated. To do so, they made a 2nd incision. They also inserted new state-of-the art antibiotic beads into the leg that will dissolve after a month. Along with 6 weeks of IV antibiotics, they believe this should destroy the remaining infection.

The healing process will take a bit longer this time as her bone is very brittle and weak. Therefore, Cindy will not be on the prosthesis for several more weeks.

That said, she will begin physical therapy first thing tomorrow morning, believe it or not.

I will provide another update once Cindy is situated in her room, which will likely be later tonight...providing they have a room for us. If not, it could be ICU for Cindy this evening, but we are hoping that they will not be overbooked like the last time.

Wed. 2:15 p.m. Update

Cindy just was taken in to the operating room. It should take 1-2 hrs. She was in very good spirits right up to the time they knocked her out.

Our friend Christine will be in there holding her hand throughout the entire procedure.

Once I get an update, I will post it here.

Rob

Tuesday, June 22, 2010

Update on Surgery

We heard from the hospital. Surgery is scheduled for 12:45 p.m. tomorrow.

Rob

Monday, June 21, 2010

Hello! Testing! Testing! Is This Thing On???

It's been awhile since I posted the last blog. The reason is that all was kind of going okay...but not really.

The infection remained and continued to grow. At this point, most of Cindy's nights are filled with pain, pain meds and insomnia. For that reason, we cannot wait until Wednesday.

The surgery was scheduled for 12:15 pm, but we have been told it has been moved to 3:45. We will receive confirmation tomorrow as there seems to be some confusion as to when it will be.

It should last between 1-2 hrs. The goal will be to remove any foreign bodies that remain in the amputated leg and insert antibiotic beads into the infected bone. We should be in the hospital until Friday or Saturday, but with us, nothing is a sure thing.

I will blog the day of surgery and as soon as it is completed to update everyone on how Cindy is doing.

I will answer any questions you may have (to the best of my ability).

I'll be back then!

Rob

Sunday, May 2, 2010

Sunday, May 2nd Update

There is some improvement, but the infection remains. Swelling and redness are still present and it is sensitive to the touch.

Cindy has not been in the prosthesis for over a week.

The good news is that it hasn't slowed us down at all.

This weekend also gave us an opportunity to remind ourselves how grateful we are that this is the only ordeal we are battling...and how wonderful it is that we are still together fighting the fight when so many others have lost their lives to cancer.

In the grand scheme of things, this is a pothole. It is not a roadblock.

Friday, April 23, 2010

Infection Update

The good news is (I prefer starting with good news) that the infection is not bad and the hope is that it can be cleared up with oral antibiotics. Therefore, we were not admitted and inpatient IV antibiotics may not be necessary.

The (not really) bad news is that Cindy has been told not to wear the prosthesis again for two weeks, or until we can return to Moffitt to have the leg looked at again. Therefore, it will slow up the progress that has been made thus far.

Why is this not a big deal? Because it's a marathon, not a sprint. We'll get Cindy on the prosthesis when the time is right. There is no rush or due dates, so this is not a disappointment...it's just (are you ready? wait on it...here it comes...) IT IS WHAT IT IS! There! I said it! Original philosophical statements at their finest!

I'll provide an update over the weekend as to how the leg is doing.

Thursday, April 22, 2010

Minor Setback

Unfortunately, Cindy's leg is once again infected. It began last night and is showing signs of getting worse.

We saw her primary care physician who recommended Cindy goes to the hospital.

She will immediately begin a regimen of antibiotics and we have an 11:45 am appointment tomorrow at Moffitt. With luck, it won't be an in-patient visit.

We'll let you know how it goes.

Monday, April 19, 2010

Q & A

First things first...Cindy's PT yesterday was a success. She walked with much less pain.

Now to your questions:

From Rus:

How does the leg know what to do? Are there sensors linked to muscles, which Cindy needs to use to communicate to the leg how to move?

The leg moves according to the muscle movements as Cindy walks. A computer programs the chip which is inserted into the artificial knee. The chip tells her knee when to bend. This is regulated by the movement of her artificial foot.

Question:

When will the Orioles win another game this year?

Memorial Day weekend (but only one of three game series)
===========================================

From Wendi:

My question is about the phantom leg pains...they say the pain can be pretty severe, and luckily it sounds like yours hasn't been too hateful. But I am wondering...is it pain like would be in the part of the missing leg, like your foot, or pain in the stump itself? I have heard people say it is a feeling like the leg is still there..hence the word "phantom", but why pain? Why not an itch you can't scratch, or a feeling like your foot is asleep when you have no foot?


It is not in the stump, but is actually in the amputated leg, as if the leg were still there. The pain is similar to pins and needles, or electical shock. Fortunately, the pain has subsided, but for awhile there was little to no sleep because of the pain.


Another ?

There doesn't seem to be anything that you both cannot do or achieve from what we are seeing up North here. Is there anything that you guys cannot do since the surgery? Or have you continued doing the same activities, vacations, and such but just modified them to your needs now? anything you absolutely cannot do that you really truly miss and cannot wait to do again?

We miss taking walks together and it is difficult to talk when Rob is pushing the wheelchair and we are not side by side. We can't go to ballgames like we used to because of all the stairs. Walking the beach is also off the list, but we will find a way to get back to that in time.

Other than that, we do not let anything interfere with our lives. We choose activities that we can do and we enjoy each other's company so it is easy for us to be content with whatever restrictions may exist.


The upside is I am still alive. Everything else is secondary...so the leg thing does not really bother us.

If anyone has more questions, we will be glad to answer them.

Sunday, April 18, 2010

Sunday Physical Therapy

We leave in 10 minutes for Sunday evening PT. I'll report on how things are going and will also answer the questions that were offered in the comments section this past week.

Wednesday, April 14, 2010

Yesterday's Physical Therapy Session

Cindy showed that she could walk with the prosthesis without pain. The test will be how it feels once she wears it for extended perios of time. She will begin practicing tonight and we will see how it goes.

Lengthy session scheduled for tomorrow as they make adjustments to the prosthesis.

We will be answering your questions in the next day or two...if you have other questions you wish to ask, please offer them and we will be sure to answer.

Here is a sample Q & A:
Q: How much does an artificial leg weigh?
A: The leg Cindy has weighs 10.5 lbs.

Monday, April 12, 2010

Big Day Tuesday

Return to physical therapy after a week of resting the leg to reduce the pain.

Hopefully we can pick up where we left off.

Looking for a dose of "pain-be-gone"!

We'll let you know how it goes.

Sunday, April 11, 2010

Cindy's Q & A - Part II

The previous blog seems to be a big hit! Who would have guessed?

Wendi and others asked if they can ask their own questions. The answer is, "How fun would that be? Absolutely...let's do it!!!"

If you post your questions on the blog, we will answer them for you. No question is out of bounds or too absurd.

For example: Rus asked what kind of ice cream Cindy likes?

I can validate that it is mint chocolate chip. Why that flavor?

Because it is Cindy and Katie's favorite.

Again, ask whatever you'd like and I promise Cindy and I will respond.
  • Want to know what it's like to be in a wheelchair? Is it difficult?
  • Want to know what drives us crazy?
  • Want to know if it's challenging taking a shower and how it's done?
  • Want to know some of the biggest obstacles Cindy faces in the course of the week?
  • Want to know what I think about being married to someone with one leg? Seriously...I will answer it if it is asked.

Get creative if you'd like. All questions will be answered.

Can't wait to hear from you all...and if you haven't left a comment on the blog before, this is a great time to do so. We would love to hear from you.

Have a great week!

Rob & Cindy

An Interview With Cindy

Tonight, an exclusive interview with Cindy Harris...

Q: How is the progress going with you leg?
A: Well, right now there has been a delay in the action. The progress has stopped and we need to make some adjustments to the prothesis based on our visit to Moffitt last week.

Q: What are your feelings about this setback?
A: I am disappointed. It's really best in the long run that the prosthesis fits properly without pain.

Q: What have you been doing to keep your spirits up?
A: Eating ice cream.

Q: What do you see as your timetable for walking with a prosthesis?
A: It depends on if it's with a walker, with a cane or independently. With a walker, within a week. With a cane, within two weeks. Independently, when Kevin comes home for his mid-tour leave on June 27th.

Q: What are your feelings now about having to lose your leg?
A: Based on the degree of infection I had, I am happy with the outcome. At the same time I am frustrated that things have not moved along further. I am anxious to stop being a burden on people.

Q: How has work been going since you have been back?
A: Work is going well. My coworkers are extremely helpful and supportive. 

Q: What else would you like the readers to know?
A: What makes me happy is the joy that I find in each day.

Thursday, April 8, 2010

Good News!

The x-rays and exam indicated no signs of cancer or torn muscles.

The possibility exists that Cindy may have exposed nerves, but the surgeon doubts it. The hope is that she is feeling discomfort because of the lengthy infection that was in her leg for so long.

She called her physical therapist and they discussed what needs to be done next. She will rest the leg until next Tuesday and see if that reduces the pain. If not, they may need to remold the portion of the prosthesis that Cindy attaches to her leg so that she can have a more comfortable fit.

All good news...

Wednesday, April 7, 2010

Minor Setback

Cindy has been experiencing a great deal of pain while wearing the prosthesis.

Her physical therapist recommended she have it checked out at Moffitt. The possibility exists that some of the muscled that were sewn up during the amputation may have torn lose. There is a bit of a lump that is noticable and he is concerned.

We have an appointment at Moffitt tomorrow morning for an X-ray and consultation with the surgical team. In speaking with them, we were informed that nobody believes it's cancer.

I'll update the blog when we return from the appointment.

Saturday, April 3, 2010

The Breakfast Club



















  • Destination: First Watch
  • Event: Breakfast
  • What's Different? We had a puppy with us. He is a 12 week old Lab/golden mix named "Bunker"
  • Most Memorable Difference? Cindy arrived with "two legs".

Though it will take several more weeks of physical therapy and practice, the goal will be for Cindy to transition from a walker to a cane as she begins to gain strength, confidence and balance with the prosthesis.

We have a long way to go, but today marks a huge milestone in her progress toward walking again.

Have a happy Easter to all those who celebrate!


Exciting Day!

Cindy and I are going to breakfast. This, of course, is not monumental...however, it really is. Cindy is going to breakfast wearing her prosthesis for the very first time.

Pictures will follow later today!

Tuesday, March 30, 2010

What??? You're Still Here???

Yes, I still check in once in awhile.

Are you doing the same?

Are you interested in occasional updates, such as when Cindy will be able to take her leg home?

If you do have interest in my rekindling the blog, let me know either by leaving a comment or sending me an email. If there is enough interest, I will do so.

Monday, March 22, 2010

...So In Conclusion

Both Cindy and I agree that all good things must come to an end, and so it shall be with "The Adventures of Cindy Lou" blog.

The great news, as you know, is that there is no monumental news to report and the blog updates are becoming a repetition of Cindy's daily activities that will likely continue for some time to come.

She is back to work...progressing through physical therapy...and planning for her/our future, which seems brighter than it has been in more months than I care to count.

To all of you who have been there for us, words cannot possibly capture the gratitude that exists. Your selfless and gracious acts of love, kindness and support nurtured us throughout our journey.

I would love to mention everyone by name but I would be forever haunted with guilt if I left even one name off the list. So with that in mind...to those who were by our side during surgery, visited Cindy at home, provided meals, assisted with correspondences, stayed at the house while I was away, called and emailed to see how we are doing, sent flowers and gifts, provided valuable advice, watched our pets, prayed for Cindy's recovery (it worked!), and for any and everything else that helped us get from the starting line to where we are today, we cannot possibly thank you enough! Cindy and I will never be able to properly repay you. Then again, you also know we will always be there for you if you ever need us for anything.

The journey is far from over, but it is no longer worthy of a blog. At the same time, we want everyone who has read the blog to know you can contact us at any time for updates. I can be reached at Robster03@comcast.net or on Facebook. Cindy can also be reached in the same fashion at LLHOrlando@comcast.net or on Facebook...and of course, as always, we are but a phone call away!

We have much to look forward to...and with that, we thank you again for everything and hope we see and/or speak to you soon.

Love,

Rob & Cindy



Sunday, March 21, 2010

Sunday PT

Cindy is getting more and more comfortable with the prosthesis. Today she did four laps around the inside of facility...and with much less effort than during her previous "road trip".

We are only now beginning to learn how lucky we are that this facility is in Orlando. People fly from all over the world to receive treatment here. Tonight we met a couple that lives only a couple of miles from where we lived in Maryland years ago. They are down here for a week to work with Stan and his team. Others are here from California, South America, etc. For us, it's a 12 mile drive!

Today's new goal after Kevin called this afternoon from Afghanistan...Kevin is going to sign us all up for the Disney 5K walk, which takes place the day before the marathon. Just as Kevin and I will be training for the marathon, Cindy will be training for the 5K. Katie and her mom will be joining us...we haven't approched her dad yet, but we will.

If anyone wants to join us in either event, please let us know. It would be great fun to have everyone participate together! If you are interested, we need to sign up soon as they usually sell out quickly.

Email me at Robster03@comcast.net if you would like to register or discuss it.

Have a great week! I will blog again during the week.

Saturday, March 20, 2010

Weekend Update

Physical therapy went extremely well yesterday morning. I was amazed to see Cindy walk around the building twice using only a cane for balance! We have another session Sunday evening. The camera shall be coming with us.

Our insurance company finally approved the purchase of Cindy's permanent leg, so hopefully it will be ordered soon. Though it will be very costly to us, it is still less than we thought it would be. It is similar to buying a Porsche, but paying for a Cadillac. We can't wait for her to get it. State of the art stuff. The computer chips is supposed to be incredibly sophisiticated.

Today we are off to walk around beautiful downtown Orlando's Lake Eola. The weather today is warm and sunny, so we are going to take full advantage of it!

Tonight is my first training run in preparation for the Jan 6, 2011 Disney Marathon...another crazy idea our oldest son, Kevin signed us up to do when he returns from Afghanistan.

Wednesday, March 17, 2010

Back to Work!

Cindy is successfully transitioning back to the gainfully employed population...another major leap forward in her mission to return to as normal a lifestyle as possible.

Though it is challenging and takes her longer to get ready in the morning, she is able to do so.

Physical therapy continues to go well, with the hope that she will have a leg to take home by the end of the week (no promises have been made).

When that day occurs, it will be a monumental celebration for all of us...and when I say all of us, I mean every one of you that have followed the blog, offered kindness, support and words of encouragement and especially love & friendship throughout. Without you, it would have made for a much more challenging ordeal.

Though the journey is not over, the light at the end of the tunnel is becoming extremely bright...and exciting!

More good news to come...soon!

Sunday, March 14, 2010

Sunday Physical Therapy

Tonight was a brief PT session, but extremely productive. Below is the leg...which Cindy successfully attached prior to beginning her exercises.




As you can see below, she is now walking comfortably with one hand on the rail and one hand at her side. It may be hard to spot, but she is walking with the shoe removed from her atificial leg. Notice that the foot they use is shaped very much like a human foot. It even has toes and toe nails.



Some of you that live in the Orlando area may recall a story that was broadcast on the television stations and newspapers about a female high school soccer star who was participating in a car wash to raise money for her soccer team. One of her teammates accidently hit the accelerator of a car she was going to wash and pinned the young girl, Bree, between the car bump and a building. She almost lost her life, was in a coma and  regained consciousness days later. Unfortunately, the accident caused her to have one leg amputated and the other leg in jeopardy of suffering the same fate. She is still trying to save her other leg but is dealing with infections and pain, much as Cindy did prior to her amputation.

I asked the owner (Stan) if she was a patient of his. His response was that she is not only a patient, but she is wheeling into the room as we speak...an incredible coincidence!

Not only was her story carried throughout the U.S. because of the tragedy that befell her, it was also a human interest story because of her spirit and willpower to overcome the tremendous odds against her survival and her proclamation that she plans to dance at her prom.

After we were introduced to Bree, she watched Cindy walk. Within a minute she was conversing with Stan and Cindy's therapist, Roger about Cindy's movements. They agreed with what she observed. Seconds later, she was coaching Cindy on some extremely minute changes she might consider in her gate to walk more efficiently.

She is everything we heard and read about and it was a pleasure to meet her.

Cindy was given Monday off to rest her leg and to allow some adjustments to be made.

The belief is that she will definintely be taking the leg home with her before the week is out.

Tomorrow is Cindy's first day back to work so she is extremely excited to be assimilating back to a normal lifestyle. It's incredible how far she has come in such a short period of time.

I hope (plan) to report more good news as Cindy's big week begins.

Friday, March 12, 2010

Quick Update

Cindy was supposed to advance to walking with a cane today (Friday), however, in typical Cindy fashion, she achieved it earlier than expected...yesterday!

Today, she continued to make progress as she becomes more comfortable with attaching and removing the leg, and, of course, walking on it.

We will return on Sunday evening for another session (more pictures will be included), and a few sessions next week.

With luck, she will be able to take her rent-a-leg home next week, with her upgraded model arriving some time after that.

Wednesday, March 10, 2010

The Beginning of Mobility

Though I was in Miami on business and Cindy had to leave for physical therapy at 9:30 a.m., I was not going to miss her taking her first steps. After a 3:30 a.m. wake-up and 4 a.m. departure, I was able to surprise her by arriving home just before she had to depart for physical therapy. It was SO worth it!

This picture was taken just after they brought out Cindy's "Rent-a-leg". Actually, she is going to borrow this leg until she learns how to walk with an artificial limb. Then she will be fitted with her "keeper" model.




Once she was taught how to attach it, Cindy stood up for the first time.



After some practice and helpful hints from her therapist, Cindy began to walk more quickly and steadily. She had to return in the afternoon after some adjustments were made on the leg and though this picture does not show it, she began to make incredible progress and relied less and less on the handrail.


Cindy will return tomorrow and Friday for more PT. There are two schools of thought amongst the therapists...one is that she will be walking with the assistance of a cane on Friday. The other is that she will be walking by early next week.

It is so encouraging to see that Cindy will soon be out of the wheelchair and moving around like she did prior to her sarcoma and all the surgeries she endured.

Her enthusiasm was infectious. Katie and I were absolutely thrilled to be witness to it.

Monday, March 8, 2010

First Steps Just Days Away...

Today Cindy went to her appointment and received GREAT news! She has made so much progress that they fitted her and created the mold for her prosthesis...and she will begin physical therapy this Wednesday.

In other words, she will take her first steps in less than 48 hours from now!

We'll try to provide an update (hopefully with pics) Wed. evening.

Friday, March 5, 2010

The Next Leg In The Journey

No more antibiotics! After six tedious weeks of IV infusions, the pick line has been removed.

Below is Cindy doing her last infusion just before Mark, her nurse, came to remove the pick line for what we hope will be the very last time ever!


Mark arrived soon after this picture was taken and freed Cindy from her plastic tubing-like prison cell.

He is a truly great guy. Yes, Mark is a nurse, but he is studying to be a chef in his spare time, which is why he came to the house in a chef's coat (see below). Last night he baked some incredible bread that he brought for us all to try (Cindy, my parents and me). The good news is that he no longer has to come to the house to assist Cindy with infusions and to draw blood. The bad news is he will no longer be dropping by to care for Cindy. We hope he will transition from nurse to friend and visit often along with his wife (not just because he is a great cook!).




Look again at the picture above. It's easy to forget by her smiling face that Cindy is only standing on one leg, isnt it! Sometimes I forget as well. Life is as normal as it can be...just with a modification or two.

Things are improving every day. Since the infection is gone, her energy level is returning...and she is doing more things without feeling exhausted.

Last night, Cindy returned to cooking. She made one of the most amazing briskets that any of us have ever had. It was incredible!

On Monday, Cindy returns to the Prosthetics and Orthotics Center to see what progress she is making with her liner and some of the pain she is experiencing while wearing it. We are hoping she is another week closer to being fitted for her "starter" prosthesis. One she learns to drive it, she will graduate to the Porsche version of an artificial leg. Hopefully it will brake better than a Toyota (bad joke).

Have a good weekend!

Tuesday, March 2, 2010

Infusion Conclusion

Infusing each evening takes between 2 - 3 hours. It is truly a pain to be locked into one spot so long each night.

Well, it all ends this Thursday....hopefully for the last time forever!

Everything is moving along smoothly. Cindy is still getting pains in her leg and phantom pains in her phantom leg, but they seem to be getting a bit better each week.

Monday, March 1, 2010

Flying Solo

Cindy took her first solo trip to the doctor this morning. It was a bit exhausting because she had to use the walker to get from the parking lot to the office (which isn't all that close to the curb), but she did so successfully.

Each day she becomes a bit more independent.

Friday, February 26, 2010

Major Progress

In a previous blog, I indicated Cindy is now driving a vehicle. Beyond is proof:


Today was a big day. It was Cindy's first visit to the physical therapists. They will also be fitting Cindy with her prosthesis.


When meeting with the owner and some of the therapists, they indicated that Cindy is healing at a rate that they have only seen in one other patient thus far. If all continues according to plan, she will be in a prosthesis in as early as two weeks from now.

They fitted Cindy with a silicon liner, which will prepare her for the sizing and fitting of a socket. Once she has completed this task, she will be fitted for a plaster cast, which will be used to make a foam cast, followed by a final cast that will fit into the prosthesis. Below is Cindy just after she was fitted for her first liner. As her leg shrinks, which it still needs to do for the proper fitting of the prosthesis, so will the size of her liner.

To see the picture below as it is supposed to be viewed, lie on your right side and look at the picture with your head on the ground. (Sorry, but I was unable to turn the picture so this is the best I could do) :-)


As for the posthesis, they will give Cindy a "training wheels" version, which will provide additional balance but not as much mobility as the permanent prosthesis. Karen, who we met on our previous visit has the same prosthesis that Cindy will eventualy receive. You can barely see that she has a limp, and when she is wearing long pants, it is impossible to know she has an artificial leg.

This week, Cindy's brother Warren stayed with us while I was away. Since you have been hearing about him, the picture below allows you to see him. Warren was a huge help to us this week. He returns to the balmy, tropical Baltimore weather tomorrow...and his younger brother, Jim, arrives for a brief visit. Amazing that we have both here on the same day and they will not get to see each other. The great news is that Cindy and I will get to see both!


Next week...my parents return for a four day visit...and our cousins Jeff & Karin stop by as well.
Busy times ahead! It is so gratifying that so many people wish to see Cindy.

By the way...we picked more ruby red grapefruits from our tree than we can possibly use. If you would like some free delicious grapefruits, please let us know and we will save some for you!

New Blog Later Today

Cindy will be going to her first physical therapy session and (hopefully) prosthesis fitting.

A blog with pictures will be posted later today.

Monday, February 22, 2010

Today's Update: A "10" on a "10-Scale"

Today we had our quarterly visit to the Moffitt Cancer Center.


Our first stop: Cindy had a CT scan, followed by an MRI. The reason for these two tests:
  • Check her lungs to see if the sarcoma is reappearing. If it does return, the lungs are typically the first place it will be visible.
  • Check Cindy's liver to see if the growth that was biopsied in December has grown. It was not deemed to be cancerous at that time, but if it grows, they may want to biopsy it again.
  • Check Cindy's kidneys. Since she has been diagnosed with Stage 3 kidney failure (there are only four stages) from all the chemo she received, they need to ensure the kidneys are still functioning properly.
Below, Cindy and I, along with her brother, Warren (photographer extrodinaire), are on our way to the testing area.


Once Cindy completed her MRI and CAT scan, we went to meet with the battery of doctors who typically see us on our visits. Of course, the first person to meet us was Christine, who you may remember is the physician who worked with Cindy and was with us when Cindy took her very first step without her "other" leg.



Then the other doctors began to arrive...and each gave us great news!

  • Cindy's lungs are clear. There are no signs of growth.
  • The growth in her liver has not expanded in 6 months. They will take one more MRI three months from now. If it still hasn't grown by then, they will stop checking as they will be certain it is not cancerous.
  • Her kidneys look great and they are functioning at a normal level!
Along with this great news, they also removed all of the stitches in Cindy's leg. It is healing extremely well and there is no sign of infection. She will be on IV antibiotics for two more weeks and then she will no longer have to take any antibiotics (IV or oral).

The picture below is Christine, Jay (the nurse who stayed with Cindy and held her hand during surgery) and us.

WARNING: If you are squeemish, you may not want to look at the picture below as it shows "Little Lu" in all its glory. For us, we think it looks great, but not everyone reacts the same way to something that is a bit out of the ordinary.

If you don't wish to look at the picture, you may wish to leave the blog now. We understand completely. We are posting the picture because this is Cindy. Note the smile on her face. She is happy and healthy...and for us that is all that matters.

So with that in mind, I will end the blog above the last picture. Cindy begins physical therapy on Friday. At that time, she will be fitted for a prosthesis...we can't wait!

I will report more at that time, if not sooner.
=====================================================================









Sunday, February 21, 2010

Weekend Update

After a challenging week in which Cindy was up all night for two straight nights, we finally learned why this was happening. Cindy decided to play doctor and took herself off of a prescription medication she was taking. The side effect of doing so caused her to have massive bouts of insomnia. The good news is that her nurse verbally took her to task and now she is taking the medication again...and sleeping through the night.

Tomorrow (Monday) we are going to Moffitt for Cindy's quarterly cancer check (MRI's, labs, etc.) and to have the stitches/staples removed from her leg. This is always a bit of a nervous time for us because we always worry about the cancer returning. Hopefully we will have good news to report on tomorrow night's blog update.

Gotta go! We are picking Cindy's oldest brother up from the airport. He is coming to stay with us for a week to see his sister and watch over her while I am traveling mid-week...an amazingly generous gesture!

Wednesday, February 17, 2010

The Healing Process...Cindy and our Garage Door

Our garage door was replaced today. You don't realize how much you miss it until you don't have use of it. Last Friday we had a driving rainstorm and low temperatures. Wheeling Cindy out the front door and around the house to get to the driveway in her wheelchair was one of the coldest, wettest, more unpleasant events we experienced in a while. I don't think we will ever take our garage for granted again :-)



We both feel really bad...not because the door was damaged and needed to be replaced; but because a wonderful person with a heart of gold came to visit and offer some friendship and happiness to Cindy - and instead left feeling upset. To that person who shall remain nameless...we loved that you cared enough to come by and hope you will do so again - SOON!

Further updates...Cindy is now driving a bit. That is a huge step (sorry for the "step" pun) in her road to recovery. It is still challenging to walk with her "uni-leg", but she is managing to balance much more steadily each day.

The severe pain she has been having from the phantom pains has not been as intense lately. We can't even begin to tell you how wonderful that is.

Cindy has two more weeks of IV antibiotics. We can't wait until she concludes that process as it takes on average two hours each night to infuse. At least she has been enjoying the Olympics while she "drips".

This Sunday, Cindy's oldest brother, Warren, is flying down to stay with us for a week while I am away for a few days. We can't even begin to express how much that means to us. While Cindy is becoming more mobile, we are still not sure she is ready to solo overnight yet.

Everyone...please continue to stay in touch with Cindy and for those who wish to, please keep visiting! It thrills me to see how happy she is when friends visit with her.

That's it for now. More soon!

Friday, February 12, 2010

The Next Chapter...


Once Cindy has her stitches and staples removed (2/22), she will begin the next chapter in her life...walking again.

Our daughter-in-law, Katie, Cindy and I visited the location where Cindy will have her prosthesis fitted and where she will do her physical therapy to learn how to walk with her new leg.

Pictured is Karen, who will work with Cindy. She is an amazingly nice person and has had a prosthesis since she was 13. The place makes you feel very welcome and warm...and encouraged. Pictures adorn their walls of patients that are missing limbs. Each is competing in a physical activity...which includes surfing, running, biking...and even pitching a baseball game with an artificial leg! Karen (above) just came back from a ski trip with her two daughters. In other words, there is nothing that a person with a prosthesis can't do if they set their mind to it.

Cindy is scheduled to begin working with them very soon...she is healing that quickly!

I'll update the blog again as we begin the new journey toward Cindy's first steps.

Thursday, February 11, 2010

TOMORROW'S ROADTRIP

Tomorrow we are going to visit the location where Cindy will be doing physical therapy when she receives her prosthesis. I will be taking my camera with me and will post pictures on the blog.

You'll never believe what happened to our house yesterday! I have been sworn not to say anything on this blog for a few days. Oh, heck! I can't help myself...When we say, "Park in the driveway and come through the garage"...we mean by foot...not by car! 

Sorry...I couldn't resist...but I will not give up names until I post pictures after it's fixed.

Wednesday, February 10, 2010

BRIEF UPDATE

Cindy is showing signs of improvement. The phantom pains were not as bad over the last two days.

Our thanks to Kristen for staying with Cindy last night while I was away.

To all of our friends and relatives in the DC/Balt areas who are experiencing 4 feet of snow...all I can say is we are thinking of you down here and hope your lights stay on and your house stays warm.

Monday, February 8, 2010

MEDICAL UPDATE!!!

Cindy saw her surgeon today and the healing process is going extremely well (which has never been the case for us due to the constant infections she has endured).

Everything looks great, with just a little redness around one of the stitches. This is incredibly positive news.

Cindy has a magnificent attitude which is helping with her healing process. She continues to look forward to being more mobile and returning to work as soon as she is able.

The phantom pains continue to cause her extreme discomfort. It is similar to being prodded with an electrical current at regular and unexpected intervals. We can only hope that this diminishes soon, though there are no guarantees that it will. The good news is that since her really bad episode last Friday, she felt a bit better on Saturday and Sunday. It could be because her daughter-in-law and I are totally revamping her wardrobe; donating to charity most of what she owns  and buying her all new clothes to represent her new life as a mobile, non-wheelchair restricted person!

We are also planning our annual summer vacation to Palm Island...which I promised her we would do as a post-surgery present. She can't wait to be walking on the beach again with her new prosthesis! I can't wait to tell everyone that a shark bit off her leg! :-)

That's it for now.

Take care!

Saturday, February 6, 2010

Weekend Update

The leg has been causing Cindy a great deal of pain lately. Last night (Friday) was especially trying. Today was a better day. The pain was still there, but it wasn't as ferocious as yesterday.

On Monday, Cindy will be going to see the surgeons to learn how the leg is healing.

The good news is she will not have to try to maneuver through 30+ inches of snow to do so. (We feel for our friends and family in the Balt/DC area)!

I'll provide an update Monday evening.

Happy Sunday!

Thursday, February 4, 2010

Phantom Pains

The leg is gone but the brain does not realize this. Cindy's missing leg hurts, itches and feels like it is still there.

It's remarkable that something that is not there is acting like it still is.

Here are the medical stats: 70% of amputees experience phantom pains in year 1. In year 2, 40% still do.

We are hoping Cindy will be among the 60% who do not.

Wednesday, February 3, 2010

My Wife Is Going To Kill Me!!!

Because I'm away, there is not much to report blog-wise. Cindy and I spoke this evening and she had another great day.

Unfortunately, I tend to get a bit homesick when I am away for more than one night. When that happens, I sometimes look at family pictures on my laptop. Yes, it's waxing nostolgic and it is a bit "sappy", but "it is what it is".

...so tonight I was looking through some oldies but goodies and thought I would share a few with you. Some of you have known us this long, but for those who have not, below is the essence of Cindy and why I am so mesmerized by her, even after 29 yrs of marriage.

(Note: Cindy will likely kill me for this...but it's worth it!!!)

So here goes the picture show...


I'd marry her all over again!



Why we are not invited back to parties...



I believe this is why Kevin joined the Army.


and lastly...Paula Deen and her husband meets a celebrity in pink!


I'll be back home tomorrow night. If I survive my wife's wrath, I will blog again soon :-)

Tuesday, February 2, 2010

Great News!

The pathology report came back and there was no cancer found in the leg that Cindy "lent" to the pathologists. I am concerned because we got the feeling they don't plan to give it back! :-)

The higher than normal level of antibiotic in Cindy's bloodstream is now back to normal and she will resume taking the two IV antibiotics prescribed to her...just not as much.

Kyle's girlfriend, Kristen is staying with Cindy while I am away. It is very uncomfortable to be out of town, but I know Cindy is in good hands...especially with those of you who have been providing her with food and gifts. It is gratifying to see all the love everyone has for her.

Kevin called from Afghanistan today to let me know that although some bad things happened there which he is afaid we may see on the news, he is okay and was not affected by what happened. Only 9 more months to worry about him...Unfortunately, Kyle joins him in Afghanistan in Sept, so we don't get a "worry-break".

...at least we don't have to worry about Cindy!

Have a great day!

Monday, February 1, 2010

A big THANKS, and updates on meals for those who are on the schedule

Hello all,

We cannot thank you enough for all of your love, support and offers of help these last few weeks. It means the world to Cindy and Rob, and to Rus and myself.

Cindy is feeling far better than we ever imagined possible (YAY!), and so it looks like meal needs won't be what we anticipated prior to surgery. So, with that good news....it looks like the last need we will have for a meal will be this WEDNESDAY (February 3rd). I will email those of you who signed up for meals after that date to touch base personally.

Again, we cannot thank you all enough for taking the time to help and make sure Cindy and Rob were well cared for in the first days/weeks at home. :-)

Best,

Amy :-)

Sunday, January 31, 2010

SUNDAY OUTING!

What a great weekend for Cindy. She continues to make remarkable progress and looks better every day.

We started this morning at our traditional Sunday morning breakfast spot, First Watch. It was great to be there as we never anticipated we would be back any sooner than a month after the surgery. Here we are only 10 days later! One of the nicest people we know is Chris, our server (in the yellow shirt). He is the main reason we love coming to First Watch. Also in the picture are Katie and Scarlett.


After breakfast, Cindy had enough energy to contribute to the retail economy in three stores. Here she is making the shareholders very happy in Bealls as she and Katie attacked the blouse and purse sections. They once again used the old "It's on sale!" line on me. Every time I am told it's on sale, it costs me a LOT of money!


As is the case when Cindy ventures out, it does exhaust her. Within 30 minutes after our arrival home she was fast asleep.
 
Each day continues to be better and better.
 
This week will be a bit of a nervous one as I will be traveling from Tues - Thurs. We are grateful to Kyle's girlfriend, Kristen, who has arranged her schedule so she can stay with us while I am away. With luck (and thanks in advance to all of you who have been so helpful to us throughout this venture) all will turn out well.
 
More to come tomorrow...

BLOG BLOOPERS

Not every picture gets used in the blog. 
Here is one such picture...!


He is cute, but on the move!

Saturday, January 30, 2010

LITTLE NEWS TO REPORT

Well, it didn't snow, hardly rained and the sun set on schedule. All is well.

My parents returned to Boca Raton, and Cindy had a relaxing day during which I cleaned and we organized the house to make things more accessible for her.

The only concern is that we learned Cindy may be having some challenges clearing one of her antibiotics from her system, thus her levels may be a bit high. As a result, she has been made to discontinue the twice a day IV drip until we receive the results of a blood test that was taken today. We do not believe it is anything for which we should be concerned.

Tomorrow, we will be going to our favorite breakfast restaurant, First Watch in Winter Garden Village and will have more pictures to share. We plan to be there at 10 am if anyone wishes to stop by and enjoy an amazing breakfast.

HAVING TROUBLE LEAVING COMMENTS?

Make sure when you write a comment, that you identify yourself in the body copy so we know who you are. When you complete the comment and press "Post Comment", it asks you to make a selection. Check "Anonymous". It will register your comment.

I know it's confusing and I can't explain why it is that way. Perhaps Rus and Amy can provide more insight, but we noticed last night that Cindy was able to leave a comment under yesterday's blog by following that process.

Quick update: Last night Cindy and I went to TooJay's for dinner with my parents, Katie and Scarlett. She did great! Another maiden voyage!

For us, life truly is beginning now!

More later!

Friday, January 29, 2010

FIRST ROAD TRIP

Cindy took her first road trip this afternoon. She visited with many of her friends and former co-workers at MetroWest Elementary School where she worked for many, many years. The school was her previous employer before she joined the American Cancer Society.




As you can see, she is doing great! It was extremely rewarding to see how happy she was and how radiant she looked. There is an amazing difference in her since she has had the surgery. 

During the visit, Kevin called from Afghanistan to see how Cindy is doing. It seemed strange to be speaking with him in the location where he went to elementary school when he was a child...and now he is an officer in the military. Very surreal...

The trip was exhausting for Cindy, but well worthwhile.

Tomorrow morning is our next road trip. We are going to our favorite restaurant...First Watch in Winter Garden Village. The staff there is great and the food is even better.

So far this is a great start to the weekend!

Thursday, January 28, 2010

BEST THERAPY AVAILABLE



8 week old Golden Retriever visitor.

MORE BLOGS!!!

Based on popular demand, the blog entries will continue on a regular basis...



Thank you to those who have sent really amazing gifts. Today we were surprised to receive one from our good friends from Maryland Carol & Joel. Cindy will be sending a thank you note.

Tonight Cindy will look forward to one of her favorite things...our friend Judi is bringing an 8 week old Golden Retriever puppy to play with Cindy.

Also, a special thank you to the team at the American Cancer Society. Cindy has been hearing and receiving cards from many of you and she really appreciates that you are thinking of her. She is anxious to return...

THANK YOU!!!

Cindy is doing really well today...so I will use this opportunity to say thank you...
  • To Rus and Amy: for creating and administering the blog and caring so much.
  • To Christine and Dawn: Two very good friends who are physicians at Moffitt. They were there with us every step of the way...and continue to be.
  • To Katie Harris and Scarlett Privara: what can possibly be said? You all kept Cindy's spirits high and were with us throughout. Having you with me while Cindy was in surgery means more to me than you can possibly know.
  • To Kristen, for offering to stay with us when I am away on business and can't be home to take care of Cindy.
  • To my parents for staying with us this week and assisting wherever and whenever they can.
  • To Carole, Mabel & Trish: Thank you for the delicious dinners and breakfasts. You have made my job as a caregiver more managable. To those who are on the schedule to prepare meals...thank you so much in advance. Cindy still requires around the clock attention and to take that task off my plate is a godsend!
  • To Judi: For watching Bosco and for being a special friend to us both.
  • To Rick, Jim, Steve, Warren and families: for caring so much for your sister.
  • To all friends and family who have been keeping in touch so regularly:, especially Neen, Dani, Joan, Laura, Mimi, Wendi, Breta, and everyone else who are blog followers, commenters and readers. Please forgive me if I have failed to mention you by name.
If you wish to have me continue with daily updates and pictures, please leave comments under this blog. If enough people feel they want the blog to continue on a daily or even more frequent basis, I will certainly be glad to do so. Otherwise, I will blog whenever something occurs in her medical life such as progress, setbacks, doctors appointments, lab results, etc.

If you would like more one-on-one, up-to-date information, please contact me directly on my email address: Robster03@comcast.net or on my Facebook account if you have one.

Have a great day!!!

Wednesday, January 27, 2010

PHYSICAL THERAPY

The physical therapist came for her first (and last) session with Cindy. She said Cindy is doing so well that she really doesn't need to return.

Though she was working with crutches, Cindy will continue to use the walker until the wound heals some more. From there, she will graduate to crutches at a later date when she feels up to it.


IT JUST KEEPS GETTING BETTER!!!

Each day Cindy is doing better and better!

She is more mobile, continues to be in the most amazing spirits ever, and looks like a new person.

This morning we had a nurse come by early to do an assessment. During that time, Cindy did her morning infusion. What does that look like? See below.



Physical therapy will be here soon. It will be the first time we have worked with them so we are anxious to get started. Cindy has been doing quite a bit of moving around and exercising "Little Lu" so it will be interesting to see how things go. I may post another blog with pictures from the physical therapy a little later in the day.

Again, Cindy is doing better than anyone could have imagined.


Tuesday, January 26, 2010

GREAT MORNING

After celebrating Cindy's birthday last night with family (Katie and her family...who are our close friends), we are having a great start to our Tuesday.

Cindy's nurse came over this morning and she is presently infusing. All looks good.

Honestly, Cindy has never looked better! Her pain is reduced, the infection is departing and she looks more happy and lively than I have seen her in a long time.

As I write this, she is showing a DVD to my parents about the prosthetic leg that she will be getting in a few weeks. It shows how much mobility she will have and how it will provide her with the quality of life she has not known for quite some time now.

This morning, Cindy was watching the Food Network for the first time in several months. She now believes it won't be long before she will be able to get in the kitchen and cook again. Before, she lost interest because she knew she could not do so.

I need to apologize for not having pictures to attach to this morning's blog. My camera battery died last night. Today's mission will be to replace it and add some new pictures so you can see just how well Cindy is doing.

So far, everything is going great! She is on minimal medication.

Feel free to call her on her cell phone and say hello! I know she will appreciate it.

Thanks to everyone for your concern, your caring, your love for Cindy and all you have done to keep her spirits high. It means more to us than I can possibly communicate in this blog.

Monday, January 25, 2010

CINDY'S HOME!

As you can see below, Cindy was MORE than ready to come home yesterday.



She was dressed and ready to go about four hours prior to our being released!

We were greeted last night by a beautifully decorated house. Katie (our daughter-in-law) and her mom, Scarlett snuck in befor our arrival and decorated each room with signs, ribbons, balloons and flower arrangements. Cindy was really moved by all they did. You know...the tears thing again :-)

Our friend Mabel arrived soon afterward with a great meal and some fun company. See below. In the picture, left to right are Katie, Scarlett and Mabel.  I'm not sure who the person in front of them is, but we called security and had her removed.




Afterwards, Cindy relaxed for a bit before she began her in-home infusion which will take place for the next six weeks. She will have to complete a regimen of IV antibiotics so that any remaining bacteria is removed from the residual limb (a.k.a. "Little Lu").



Cindy will infuse twice a day. It takes about 90 minutes to complete the process each time.

What has been remarkable is how well Cindy is maneuvering throughout the house on the walker. We anticipated much more difficulty with the logistical part of her activities here, but thus far, things have been rather smooth. She does tire easily using the walker and her upper body is still adjusting to being called upon for all mobility activities.

So today is her birthday! It started early with our friend, Carole bringing Cindy birthday breakfast. It was some of the best French toast we ever ate! It was so good I would not put syrup on it for fear it would mask the flavor.

Cindy's spirits and state of mind are beyond encouraging. She continues to be thrilled that the surgery was done and excited to be starting a more mobile lifestyle.

Yes, she still has some very painful episodes, but she is handling them very well.

Please know that Cindy is reading all comments that are left on this blog site, so please keep them coming. It really makes her happy to hear from everyone!

That's it for now...more to come later.

Sunday, January 24, 2010

CINDY'S BIRTHDAY!!!

If there was ever a very special Jan 25th, Cindy's birthday, this is it! Three years ago, Cindy set a goal to make it to one more holiday season. She has made it to three more...and is now celebrating another birthday! We know we will have many more to look forward to.

Willpower is an amazing thing.  Cindy is living proof that the power of positive thinking can impact the future. It certainly has for her.

Tomorrow's birthday celebration will be special...as every day on earth for us is special.

If you are reading this blog, please take a moment to leave a comment and wish Cindy a very happy birthday. I know it will make her day even more special!

Thanks from Cindy

Hi there,
Although this appears to be a blog from Rob, it's Cindy Lou Who!!! I will have to figure out how to blog under my name when we get home.....which should be today....ta dah!!!!!!

Now that they have reduced my pain meds I feel as though I am able to put two intelligent words together!  LOL I want to let you all know how much I appreciate each and every one of you. I am so blessed to have such a loving group of friends and family. Although we may not speak with each other frequently, I think we all know that we are with each other in spirit every day and would be there in a second if anyone of us needed assistance.That is how I am able to face each challenge...it's because of all of you. Plus, Rob has now thrown in a trip to my favorite beach getaway! LOL Knowing that you all are there to catch me should I fall(literally and figuratively) is an amazing feeling. You have allowed Rob and me to put our heart and soul into our new adventure. That is a gift that brings tears to my eyes every day, but concerns Rob! He watches over me so closely, that when he sees me cry he always associates that with pain. When that happens I tell him that these are the best tears to have; they are tear filled with love for all of you.

Hugs,
                 Lou Who  :o)

MY HERO

This may sound corny, but my wife is by far the bravest person I have ever met. She endured an incredible operation, an emotional trauma, severe pain, the hardship that comes from every move and movement and a constant state of drowsiness.

What does she do? Smiles, laughs, asks each person who enters our room if they are having a good day, speaks positively about everything and everybody...and has not yet complained or felt sorry for herself. Her focus has been that this is the best thing in the world and she can't wait to start her new life.

She continues to touch me in ways I would have never imagined.

As I sit here in the hospital room watching her sleep, I can only reaffirm to myself how fortunate I am.

Saturday, January 23, 2010

AN INCREDIBLE DAY!

The pictures below were taken during and just after Cindy's morning round of physical therapy. The nurse to her left is Joan, one of our favorite people in the whole world. This was the first time we had seen her in several months! When we almost lost Cindy a few years ago here at Moffitt, Joan was with me the entire time and made sure I was doing okay throughout the ordeal. We will always be grateful to her for that!







You can see by Cindy's smile that she is doing well. She had just completed her physical therapy session when I snapped this picture. The fact that she is smiling and sitting in a chair rather than being in serious pain and getting back in bed indicates how well she is doing. However, the picture also shows how exhausted the physical therapy session was for her.

The pain levels have been reduced significantly. They reduced her meds and we will be definintely going home tomorrow. Cindy is moving more quickly and confidently on the walker. Her spirits are insanely positive. She just said to me how excited she is to start her new life and reminded me I owe her a vacation to our favorite beach resort as soon as she is physically able to enjoy it.

The head of the Infectious Diseases Dept. surprised us with a visit this afternoon. We did not expect to see him. He wanted us to know he reviewed Cindy's case and determined that the remaining infection is a bacteria that he is confident the IV antibiotics will kill.

They ordered home nursing care for us (Cindy already spoke to our favorite nurse who ensured he will be the one to administer to her), physical therapy and some therapy equipment that we will need and do not have.
Today is a much better day and we are now excited to be getting home tomorrow!