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
Sunday, July 25, 2010
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.
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!!!
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.
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!
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
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).
We will check back in after the 4th. Have a fantastic holiday weekend!
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.
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 :-)
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!!!
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.
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...
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!
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.
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!!!
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!!!
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.
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
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
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