The Scoop

I Spoke too Soon... :(

2008-07-09T17:39:00.002-04:00

Hi Everyone,
Sadly, Cyndi has not been doing as well as we originally thought. Things were looking up when our Aunt and Uncle were here...and continued TH, FRI, SAT while our brother was here. I got in Saturday night and all looked well. Cyndi amazed me with her attitude and remarkable ability to walk....She was walking really well! Sadly things started to quickly digress. The infection returned bringing high fever and swelling to the incisions. They tried bedside irrigation but to no avail...She had to go back into the OR yesterday.

The good news was that the infection had not spread into the muscle, and that the muscle looked strong and the hardware was not protruding through it anywhere. The top layer however had died and they had to cut some skin away. I was told today that part of the transplanted tissue had also died, and thus had to be removed as well. They replaced her drains with two new ones and put in a vac. (sort of like a vacuum) It is a special draining machine that basically plugs the open wound with a sponge type material slowly extracting the liquid that it pulls from the surrounding tissue. The idea is that eventually it will help to pull the skin together. (forgive me if there is a better way to describe this...??)

Now we play the waiting game. If it will or will not work is somewhat questionable. If the infection comes back they may try more clean outs in the O.R... If all attempts fail, the worst case scenario would be to remove the hardware then clear the infection only to have to put it back in at a later date. Everyone is doing their best to avoid that...but it is sadly a possibility.
She had been without a fever all day..but a low grade fever has just come back. :( Please continue to send your good thoughts and prayers as she continues to fight this very long battle. Thanks again for all the support!! Teri

Up and Around...

2008-07-03T13:58:00.002-04:00

"Uncomfortable, but doing great!" from any perspective but her own anyway. (All things considered) She is walking about well. Other than the pain, it would seem as though her walking abilities have not digressed much....GREAT news. The infection is to be managed with IV antibiotics for the next 6-8 weeks. Not much else to report for now.

Recovery

2008-07-01T21:51:00.003-04:00

Hi All,
Cyndi is in Recovery tonight after a 6+ hour surgery. She is heavily sedated and on a ventilator. They hope to be able to remove the ventilator and move her to a room in the morning. Her Doctors were relieved to find that the infection was not as bad as they had anticipated. They did however have to remove some of the hardware. Our Aunt and Uncle were told that the hardware removed was not "load bearing" and thus she should be able to walk. Not a lot of detail on the plastic surgery portion of the surgery other than that the procedure went well. So we are optimistic that some blood flow in the area will speed up the healing process. Guess we wait and see. Once again, Time will tell.

Delay....

2008-07-01T03:11:00.002-04:00

Hi Everyone,
Latest news is that the surgery will be today, Tuesday July 1st. We appreciate your continued thoughts and prayers. Aunt Nancy & Uncle Charlie are in from Boston and are with her. Will update once we know more.

2008-06-29T17:53:00.002-04:00

Just wanted to give you a bit of an update on Cyndi's condition. Last Friday(6/20) Cyndi started to experience a bit of discomfort and pain. As she has had so much pain in the past she just chalked it up to the process of things and left it at that. Over the weekend her pain intensified and would not go away. When the visiting nurse, a wound care specialist, arrived Tuesday she assured her that her site was not infected and there was nothing wrong. Well, I guess looks can be deceiving because when she went for her Thursday check up Dr. Boland said that her wound was infected and that she needed to be admitted to the hospital immediately. He also said that the cause of the infection was damage of the skin and tissue due to radiation and was in no way caused by her(very relieving for her to hear.)

After many hours of poking, and waiting, she finally got a room at 1am. By Friday, it was confirmed that she would need an operation to clean out the site, re-close it with a different method by a plastic surgeon, and hope for a positive outcome. Her blood clotting levels were too low to operate immediately. So, after a full, long weekend of exams, antibiotics, pain, and transfusions----she will be operated on Monday. As you can probably guess, her spirits are extraordinarily love and could use as much support as possible.

Youch!

2008-06-18T22:38:00.002-04:00

Hi Hi Hi
My biggest apologies for taking so long to post something up on here! I have been meaning to do so since the surgery, but haven't really forced myself to do it. A ton has happened since the surgery, yet at the same time, I feel as if I am standing still in time.
As you have read, the surgery was a "success." Ok, so it went well- Although I wish I never had to put my family through waiting 14 hours while I was on the table (I couldn't imagine what they were going through during that time.)
I would go into real detail of what I remember after the surgery, but I will spare you the awful details and just give you a run-down. I woke up a day earlier than I was "supposed" to, with a breathing tube in my mouth, which was scary- but not as scary as not being able to see because my eyes were swollen shut....yeah, that sucked, but after the nurse realized I was up, things settled down for a second or so. Then the pain set in, the next week is a COMPLETE blurr...I remember wishing someone would put me out of my misery at one point, I was super swollen (arms and legs) from being in that position all that time and couldn't lift my arms and legs because they were so heavy- I was told that you couldn't recognize me if your life depended on it. Lovely. I remember begging my wonderful sister not to leave my side and she was a trooper while they tried everything in the book to make me comfortable. SO---blah, blah, blah. An awful week went by with hallucinations and such with some wonderful friends by my side (a million thanks)...At least I can laugh now at the stories they tell me.....anyway.....
I stayed in the hospital for 3weeks following surgery and then they sent me home. I was denied a rehab facility which was complete BS, because my insurance said "I was doing too well too quickly" and didn't need that kind of care. Total BS.
Since I have been home I have had a nurse coming to the house twice a week, PT coming to the house 3times a week and that is it for now. I have dealt with quite an array of emotions from full throttle depression to, well, I guess this point where I am now- very impatient. I am getting better every day, just not at the speed I would like. It doesn't seem like my body- but I am trying to get to know it and work with it to recover as best I can.
I am walking around the house without the walker, but cannot do stairs yet. When I go outside, I need the walker. I was going to the end of my street for a while, now I can make it around the block. I guess everyone around me is happy with my progress, but I am not really sharing that excitement yet. I am still very frustrated, and occasionally have my pity party, but they are few and far between I guess.
The words I have been hearing OVER AND OVER again, are "Time, it is just going to take Time" or "Time will tell." You see, with this ordeal- since it is pretty rare- no one really has any answers, it is really a matter of , "we will see." You can imagine how much I like that!
Stitches are out- scar looks good, and long....the steroid weight is coming off (also not as fast as I would like) but the facts of the matter are that, I am walking, and there is room for rehab and recovery- so I really should not be complaining. The situation as we all know, could have been much worse.
I go back to the hospital tomorrow for a Doppler test to make sure my blood clots are gone, and then next Thursday I go back for xrays and an apt with the man himself, Dr Boland. I haven't seen him since I was in the hospital, so I am hoping to surprise him with my progress when I see him, that would be the type of validation, or sense of accomplishment that I need right now. And then hopefully from there, I can go to outpatient PT, when the real progress starts! SO, I will do my best to check in after my apt next week. Thanks for ALL of your thoughts, prayers, and well wishes- you have no idea what they all mean to me. When I feel like I am officially "spent" I look at my cards, emails, etc and I convince myself that if I give up, I am letting a lot of people down including my children- whom I miss terribly and CAN NOT wait to be able to be a mother again without supervision! Talk about motivation.....
Thank you all,
Much Love and MANY thanks for everything,
Cyndi
PS- Yeah, that picture above is me- rebuilt- I have no idea really what I am looking at yet, but will get all the answers next week when I see the doc. (I mean, other than rods, screws, and pins!!!)

Coming Along Well

2008-05-14T20:13:00.002-04:00

Hi All~
Cyndi is up and about. Amazing!! She is taking a few steps with her walker and feeling a ton better. We might here from her soon. :)

WoHoo!!

2008-05-02T12:53:00.002-04:00

Hi Everyone,

Been slow to update...been a bit preoccupied! Please note day by day..current info at the end of entry...

April 30th info~

After 14 hours in the O.R. Dr. Boland came out to meet with us. "We could not have asked for the surgery to have gone any better. " The tumor is OUT!!! She is stable and is on a ventilator that they hope will be removed Thursday AM. She is heavily sedated and being closely monitored. All vitals are good and they seem to be managing her pain well.

"The Scoop" as Cyndi would say compiled from information given by both Dr. Boland & Dr. Rose:
-"The tumor was huge" It had spread to the pelvis on both sides and was attached to the wall of her rectum.
-She lost one main nerve that the tumor had already destroyed (Thankfully the main nerves run in pairs)
-She received 6 Units of blood, more will be needed in the following days
-Implanted hardware consists of rods, cross bars and 4 screws on each side
-Neurological testers used during the procedure showed that her nerves were responding well
-She received bone graphs primarily taken from her own pelvic bone

"The next couple of days will tell us more" We were told that her nerves may become stunned in the surgery and could take days or even weeks to wake up. After our initial consult with Dr. Boland he went back to check on her. He walked quickly though the waiting area saying "She's moving her feet" GREAT NEWS!!! We were not sure we could believe it. You know that feeling you get when your favorite underdog team pulls out a playoff win in the last possible second? Times that by 1000!

We can not Thank the Big Man upstairs enough for Cyndi's incredible Doctor and his team of roughly 20 doctors and nurses who persevered through this incredibly long and intense surgery. Dr. Boland said that after an hour and a half they almost gave up. They were having "great difficulty" finding the nerves embedded in the tumor. They stuck with it a little longer and found the first and very gradually the others. The removal took the majority of the time whereas the rebuild went relatively quickly. Giving up on the reconstruction would have meant complete removal. (critical nerves could not have been salvaged)

There is an incredibly tough road yet ahead for Cyndi. There are risks with the bone graph, potential for nerve damage, & possible regeneration of the tumor. We trust her Doctors will do everything they can to keep her on the path to recovery. The largest step is over and from here it will be day by day. We just have to wait and see... Your thoughts, prayers and constant support are greatly appreciated. Cyndi has the most incredible and genuine friends. We all have insider info on the strength that she possesses from within...with all of this support we know she wants to show it!

May 1st
Brutal. We had thought that she would be totally out of it for a couple of days. Due to the last several months of pain meds her threshold is so high that it is impossible to give her enough to relieve the tremendous amount of pain she is in. The pain management team was by her bedside for hours working on the situation. She has become well acquainted with the staff on the 7th floor here at MSK. Several doctors and nurses showed up to show their support. This was a huge part of her turning the corner to know that she would make it through the pain. In the afternoon they gave her an epidural however it did not seem to help much. She fell asleep for the first time at 9 pm still waking ever 10 minuted or so eventually falling into a real sleep around 3am. We are told the first couple of days will be the hardest.

May 2nd
Relief. Half way through the day she has been resting fairly comfortably. Now they are questioning if she may be more sedated than they would like or if the last couple of days have just caught up with her. She is currently getting an expected blood transfusion. Her heart rate has been fast (an apparent result of the pain) so they have continued to monitor her very closely. She can feel and move her legs and feet. When areas that were once numb are touched she says she can feel it... :)

The Final Countdown

2008-04-24T07:53:00.005-04:00

Grab a cup of coffee, or a light snack, you know we are going to be here a while....

It is hard to believe that at this time, next week, I will be coming out of the most insane surgery of my life. We are less than one week away now, and from what I understand, I will be "coming out" of my fog on Thursday. The surgery is scheduled for Wed, but after 12-18hours and all the meds, who knows what I will remember. But the bottom line is that the surgery will be behind me. It will be over!

The last few weeks have been -for the most part- uneventful. There was one trip to the urgent care in there though. I was having heart palpitations and one of my pain doctors recommended that I go in for an EKG and some tests, so I did. That incident also moved up my cardiologist appointment, so I got that out of the way last week. They ran all sorts of tests and were very thorough. As far as my heart goes- my ticker is fine, I do have some "abnormal T wave activity" but it shows up on all of my EKG reports, so that has been consistent all along. They are chalking it up to my medications, but nothing to be alarmed about at all. In fact, she (the cardiologist) doesn't even plan on being at the surgery- so I have a clean bill of health from her, which is very nice and gives me one less factor to worry about.

We met with Dr Boland on Tuesday, and that turned to be an eventful day. (Aren't they all?!) After waiting at the hospital to see him for over an hour and a half (which means I am in pain from sitting upright,) we finally were placed in a room where I could at least get on the table and lay down. After another half hour or so, he strolls in with a sheepish look on his face. He looked at me, then looked at my dad and Sharran and had a seat at the desk in the room. All of us could tell there was something on his mind, but we all waited until he spoke. He then says, "How are you feeling?" I answered, "Ok, I suppose, what is going on?" He then says, "Do you think you could wait another couple months for the surgery?"

Exactly my thoughts. At this point, I had already had a trying day, and I am pretty much at the end of my rope. I answered, "No, why?" Then he went on to explain how there is a conference in Europe about Giant Cell Tumors in the Sacrum and he was invited to it. He saw the despair in all of our faces and then said, "you know, I probably won't learn anything new at it anyway, but I just wanted to see what you thought, I was thinking out loud." With that I asked him if he really wanted me to wait, and he answered that we would go on as scheduled for now, but if he had any kind of epiphany about it or felt that he needed to go in order to better my surgery, that he would let me know.

We then continued the appointment as scheduled, and went through all the surgery details, etc etc and I signed on the dotted line. We are all set and I need to be at the hospital at 6am Wednesday morning. These apts are always so dreary because he has to go through the details we don't like to talk about before you go into any surgery. The sad truth is that with this specific surgery, there are many possible complications and unfortunately we need to talk about them beforehand. I generally always leave these appointments in tears, this one was no different.

After we finished with him, I had to do my pre-admission testing. I was already doubled over in pain, popping pills in the hallway, and then we had to go to a satellite location for the testing- which meant getting the car and going somewhere else, parking and getting up to another office. Yikes. I got to this apt and plopped right up on the table. The nurse had to take blood, urine, another EKG, and a chest Xray before we had another long "chat" about the In's and Out's of surgery. Needless to say at this point of the day, I was a puddle. I was tired, in a lot of pain, and just spent all together. After that was all said and done, we made our way back to the car and I think I was passed out before we even got out of the city (which is impressive with my dad's taxi-like driving!)

So now, here we are, in the final stretch. Kali's 3rd birthday is this weekend, so thankfully I have something to keep me slightly distracted in the meantime. It has taken 6 months to get to this point and God only knows what is ahead for me. I know realistically, that there is a long road ahead yet, and I am trying not to get discouraged. I know me, and my drive and I plan on doing the best I can with whatever circumstances I have to face on the other side of surgery. It is just hard to plan when you don't know what to expect.

Bottom line is that, I miss my life. I miss being active, I miss being a mom, I miss my normal chaos and need to get back to some normalcy asap and will do whatever necessary to get there. 6 Days to go and then the 'Road to Recovery' begins. I thank you all for being here with me- along for the ride. Without your support, thoughts, prayers, and love, I don't think I would have made it this far. This experience has been so difficult and I feel at this point that it is because you are all carrying me along- that is why I am still hanging in there! I am so thankful for each and every one of you.

I have some more little tidbits of info that I will be posting over the next few days, so stay tuned for some light hearted, fun stuff. This has been too serious and heavy and we need a face lift on this page- maybe even some pictures :)

April Fool and Operation Date!

2008-04-02T10:43:00.010-04:00

What would April Fool's Day be without a joke or two?
Unfortunately, for me, it was a day of "Pain Crisis." These are the days of unexplainable pain, in which we are to try and work through the pain with the main point of remaining out of the hospital. This time it was my feet- it felt as if the bones were actually in a vice grip of some kind. Like some one was just cracking the bones in my feet. Youch!
Sue Derby is the lead on my pain management team right now. She is amazing. Basically we spoke every hour on the hour yesterday to keep my pain and meds in check. If I didn't call her when the hour was up, she was beating me to it. Amazing. When I am in a situation like this, it is pretty scary because you don't know if the pain will turn for the worst, or if it will just go away- and what is causing it anyway?! So she would say, ok, take ten of those pills and call me in an hour.....no joke - TEN of those pills?! It is just insane, but this is what she does and I have to trust her. The next hour it was 'ok, take 8 of these pills and call me in an hour'. Bottom line is that we made it through the 24 hour period with her crazy pill anecdotes. My day was a bit of a blur with my Dad and Sharran by my side making sure the meds didn't take any bad turns. Today- I woke to her phone call asking me how we did, she had given me her cell phone number if anything happened during the night- who does that?! The care is just amazing.
So, we are chalking it up to a random chronic pain attack that shouldn't happen again. I would really like that.

On the lighter side. We have been given an operation date :)!!! APRIL 30th is the new date. I have an apt for clearance with Dr Boland on the 23rd, and then the cardiologist on the 24th- given that I get the green light from both of them- surgery will go on on the 30th. That is the new day to focus on, and I am really excited about it.

You have all been so incredibly amazing, thank you all for all the amazing support and care flowing my way. I am so incredibly thankful- there are just no words to show my gratitude. Much Love to you all always,
Cyndi :)
We are almost there!!!

Most Recent Info

2008-03-24T13:57:00.000-04:00

Hello Friends and Family ~
Hope everyone had a wonderful Easter!! I imagine most of you have heard by now that the big surgery has been put on hold for 4-6 weeks. Last week was a crazy one for Cyndi but she is in good spirits and is grateful that her Dr’s are so incredibly thorough. Their decisions made it possible for her to survive the week…quite literally. For those of you who did not hear the full story, I will do my best to tell it.
Cyndi was scheduled at 7AM last Tuesday for what was to be a minor surgery. (The big one was scheduled for Wed) She was sent to a specialist at NY Presbyterian, a hospital that is across the street from the one where she has been being treated. (Sloan Kettering) The intent of the procedure was to close off arteries that were circulating blood to the tumor. Dr’s used a contrast to see the arteries and successfully closed off two. The good news according to the specialist is that the tumor did not appear to be “well fed” which could mean less blood loss during the main surgery. The bad news is that when they were taking her out of a twilight sleep her heart stopped. They were able to revive her within six seconds.
According to the Doctor, Cyndi woke up to him hitting her in the chest. She said “Hey!” the doctor said “Hi, how are you?” She joked, “Fine.. except that you just decked me!” In perfect Cyndi style!! The doctor said he had “tapped” her twice in the chest and had given her meds to jump start her heart. As to why it happened, he couldn’t be sure. At about 9:30 Cyndi was sent to recovery where they monitored her and ran some tests to check out her heart. A cardiologist on staff was reviewing all of the details. After an EKG, various blood tests, and a careful review of all the meds she is taking, they found that her heart was in “normal range” and determined that it stopped due to Vasovagal effect. (as when one faints) After keeping her in recovery until 6:30 PM they admitted her so they could monitor her heart overnight. (The transfer to Sloan would have to wait until morning) The cardiologist said that unless her heart showed signs of problems overnight, he could see no reason to postpone her surgery.
The evening was uneventful and Cyndi was transferred to Sloan by ambulance (policy) at 4:00 AM. Her main Doctor, Dr. Patrick Boland at Sloan said that even though she was only coming from across the street, he preferred that his own people do a workup of her heart to make sure they came up with the same conclusions. Once they got the green light they were ready to go with the surgery. Her surgical team was waiting. All of the repeated tests came back within “normal range” It was now after 11:00 and everyone was waiting for the approval of one more cardiologist. A nurse from the OR came in and described a team that was ready to go and asked Cyndi if she was ready to get this behind her. It would only be a few more minutes.
The Cardiologist, Dr. Nancy Roistacher came in. With an apologetic tone she explained that she did not feel comfortable giving the go ahead. The disappointment could be seen on all of our faces. Poor Cyndi had psyched herself up for a very scary 10-12 hour surgery. The previous day’s events had made her especially nervous but now she was ready… The cardiologist explained that she did not see “burden of proof” as to why her heart had stopped. If she was a betting person she would bet that it was due to Vasovagal but she was not willing to gamble on Cyndi’s life. She made it very clear that if there was an undetected issue it would mean her life and with that in mind there were other tests that could be done to be sure. These tests however would delay the surgery. The final decision would be up to her main Doctor. He apologized profusely and said that although he did not suspect they would find anything, he had to go with her recommendation as he would never forgive himself if it turned out there was an issue, as Cyndi would not survive it. He rushed out to see how soon he could re-schedule the OR and his team and the Cardiologist ordered an echocardiogram and a CT of Cyndi’s chest.
They found blood clots in her lung, upper and lower right lobe. Cyndi had a blood clot somewhere that was either caused by Tuesday’s procedure or poor circulation brought on by the tumor, meds, and lack of mobility. Nobody would venture a guess. They immediately injected her with blood thinners and admitted her to a floor equipped with special monitoring. The next day (Thursday) they would go in through her jugular vein and insert a filter into her inferior vena cava to catch any blood clots in route to her heart.
Due to a waiting period for more contrast, it would be Friday before they could do another CT scan showing a blood clot in her upper left leg. They had run ultrasound tests as well. Cyndi was taught how to give herself daily injections of a blood thinner and was allowed to go home Friday afternoon. Before releasing her, Dr. Boland visited with her and said that according to his cardiologist colleagues it would be best to wait the full six weeks before proceeding with the surgery. Any sooner, he said, would be too risky and “Thank God we did not move forward on Wednesday.”
She is amazingly in good spirits. She knows as she said that she has “dodged a bullet”. The hardest thing for her has been the time away from her children. The visits she has with them, she is grateful for, but it has been a huge change from the full time Mommy role she is accustom to. She can take very small steps and is getting up for short painful walks. There is little left in the area where the pelvis and spine T off to support one another. Currently the tumor itself is holding everything together. The nerves in her pelvic area and legs are very affected. There is a lot of numbness and she has been given steroids at length as an attempt to keep this from getting any worse.
She is making the most of her current situation and can’t say enough about all of the friends and family that have shown incredible support through this ordeal. Everyone has been truly wonderful. Many have asked “What about the divorce and how on earth is she getting through all of this?” We are encouraging her to concentrate on that which really matters right now…her health. She and Alex are getting along well. He has been very supportive. They seem to have been able to put aside their differences and are working on their friendship.
We hope that the next six weeks will go as smoothly as possible and are of course hoping for the best with the big surgery. Thanks again for all of your support. We will do our best to keep everyone posted.
-Teri

First Time Blogger....

2008-03-22T14:58:00.000-04:00

I have been told it is time. It is time to start a blog. Or at least a place where people can get updates on what is going on in my crazy life. I thought this could be established by my myspace page or through email alone, but have learned a few things. Myspace- as addicting as it is, isn't really a place for reliable information to be shared between "friends" and well, email gets really hard to keep up with. So here I can get the recent updates across for those of you that want updates on the chaos! Here goes.............wish me luck and I hope you enjoy.

There is plenty to update on, so bare with me as I get familiar with this site as well as get the information up and running, I will most likely be handing responsibility over to my sister once I am back in the hospital, but we shall see what happens.