When Do I Get to Catch A Break!?!?

Well, things are pretty "status quo" as far as anything "new" happening. I went to see the orthopedic doc last week and he said he wants to wait 2-3 months before doing anything "major" on my frozen shoulder. He feels that there are still a lot of residual effects going on in my body from my radiation treatments. He is afraid to do surgery too soon on the shoulder because I have had little relief from the cortisone injections and he feels that I would just tighten up too fast again after the surgery. It is an option down the road, but he told me that the first attempt at surgery is his best shot because the shoulder is "clean" and there is no scar tissue. He doesn't want to waste this good shot if I am just going to tighten right up again. So he'd like to wait the 2-3 months to see if things in my shoulder change on their own. He is sending me for a second opinion on Monday to see what the Chief of Shoulder surgery says,so we'll see!

The shoulder has become the "worst" of my issues, as I am right-handed and it is VERY difficult to do things left-handed, but I am learning!!

I also went back for a repeat on the barium swallow test on Monday. We had our fingers crossed that because of all of the speech and swallow therapy I have been doing and the exercises to strengthen my muscles and voice there would be an improvement in the test, but it doesn't look that way. THAT was quite disappointing. I am managing with the feeding tube, and God knows it is ANYTHING but enjoyable, but I know it is keeping me alive and keeping me from aspirating everything I eat and drink. But I was REALLY looking forward to having some lobster on our annual family trip to Maine in a few weeks. Guess that won't be happening this year. There's always next year.

On the upside, my voice is a bit stronger, although NO where near normal, but at least now I can talk on the phone and be heard. The kids and I are trying to enjoy our summer the best we can. They are going to the Cape with Chris and then will be going to Maine with me and my family. They are also going to camp for a week in August. Soon enough, school will begin again and we'll be back to the grind every day. They are both VERY excited to go back to school. I am thankful for that. As for me, it is not looking good for me to head back to work yet. But were working on it!

I hope everyone is enjoying their summer. They say it may climb to 100 degrees on Thursday and Friday this week!! Thank goodness for AC!!!

A Year Later.....

Well, here we are, just over a year after I was diagnosed with this horrible disease for the third time. Last year at this time, I had had my portacath placed in my chest and had just completed my first round of very aggressive chemotherapy. I also had just been discharged from the hospital because of severe mouth sores that prevented me from drinking, eating and talking. I had even just had my head shaved with the anticipation of losing my hair because of the chemo.

This year is a little different. My family and friends all participated in the Relay For Life this weekend and raised over $6000 for the American Cancer Society. Nice work Team Tigger!!! For those of you that may have been wondering, I DID NOT shave my head this year at the Relay!! I am VERY excited that I actually have hair, as puffy as it may be, and do not plan on shaving it ever again. It was quite wet this year, as it rained most of the day and night, but the die-hards stuck it out and survived another year! I thank them for that!!

As most of you read in my last post, I was hospitalized with aspiration pneumonia. I have since returned home with a feeding tube and am unable to take ANYTHING by mouth. It is quite frustrating as I was in no way prepared for this to happen. I made it through the most difficult of treatments without the feeding tube, and now, when I am supposed to be recovering and feeling better and stronger, I have had to have it put in. As adamant as I was not to have it, it is helping me gain weight and giving me the nutrition I need to get stronger. I just wish I knew it had been coming so that my last meal would not have been a hot dog and french fries!!


So the visiting nurse comes once a week now just to check on my and my weight and make sure my blood pressure is not too low. I also have a Physical Therapist that comes twice a week to work on my neck and shoulder and I still have a frozen shoulder. I did get another cortisone in my shoulder on Friday, so hopefully that kicks in soon!! I also have a speech and swallow therapist that visits twice a week and does exercises with me to strengthen my voice and my swallowing muscles.

I have another check up at Dana Farber the end of the month. Hopefully I am getting stronger and my body is now healing faster with this liquid nutrition. I'll keep you posted with the progress.

I also want to wish my "aunt" lots of love, prayers and positive thoughts as she continues to fight her battle with this horrible disease. They have brought in the "big guns" now, so we are all praying they work. Love you lots!!

And to my parents' good friend, Dick, keep fighting and stay strong! You are amazing and doing a helluva job in your fight as well!! Keep you chin up!! Love you, too!

They say rain all week....yuck! Makes for a very depressing week!! We need sunshine!! Kacey is done with school until September when she will start Kindergarten. Cam has another 7 days and he will be finished with first grade. They grow so fast. Looking forward to the summer and spending some time with the kids doing fun things that we didn't get to do last year.

Have a good week, all!!
Love, Kris

Kris' latest hurdle :-(

Kris came home last night. She was admitted to the hospital Tuesday morning with what turned out to be aspiration pneumonia.

Seems that anything she took by mouth was being aspirated into her lungs…which is a serious condition. This is caused by her swallowing problems.

So to avoid this from happening again, she is now not able to take anything by mouth and is on tube feedings.

I'll be staying with her until she is able to manage on her own. She was finally able to get a cortisone shot in her frozen shoulder so hopefully that should be feeling better soon.

She is frustrated as hell…but will get thru this too.

Please keep her in your good thoughts and prayers.

Linda

Gonna Keep On, Keep On, Keep On Movin....

So the whole voice thing has not gone exactly according to plan. My voice is "some" better, but not nearly where it needs to be. And now I am having more trouble swallowing. We have scheduled a special swallow video test to see what's going on in my esophagus and we'll go from there.

I have also been going to PT for about 8 weeks now to try to loosen the muscles in the side of my neck and shoulder and strengthen the ones in my back and back of my neck. Things had been going well and the PT was helping. Then my right shoulder froze this week and now I cannot lift my arm. My PT suggested a cortisone shot. I went to Dana Farber on Wednesday for a check up and my oncologist said she thought it was a good idea as well. So I have an appointment with an orthopedic on Tuesday. Keep your fingers crossed it works!! It is HORRIBLE being right-handed and not being able to move your arm!!

Last night was the Relay For Life Fashion Show. They asked me a few months ago to be in it and I said yes. I have done it in the past and it was a lot of fun. Little did I know how much pain I'd be in this week! Or that Cameron and I would get the stomach bug again on Wednesday and really not eat until Friday!

I went for my fitting on Tuesday for the show. We used this adorable boutique in Wellesley. Was not sure how the clothes would be as I did not really care for my outfits in the last show I was in. But this time, they were SUPER!! I really liked them all...especially the first top I wore. Really was a glorified t-shirt, but so cute! So I thought I might get it after the show until I looked at the price tag....$150!!! That's a whole week of groceries at least!! It was cute, but not that cute!!

The picture at the top of the blog is another outfit I wore. The kids came to see me in the show and were SO excited and proud of their Momma. They were so cute and everyone there fell in love with them. They made me smile and get through the show when I was feeling like crap. And I also want to thank my Mom and Dad for staying with the kids while I got ready for the show and bringing them to the show, my sister, my cousin Meredith, and my two best teaching buds Kathy and Maryellen for attending the festivities last night. I hope fun was had by all!!

So that's it for the update at the moment!! Cam started baseball last week, so that has us running two nights a week!! Gonna be a crazy month and half until school gets out, but then I hope things slow down, and we can enjoy our summer. We didn't have much of one last year.

Until next time.....Oh, one more thing!!
I want to wish my Mom and my sister a Happy Mother's Day!!! Love you both so much!! And to all my other Mom friends out there!! Enjoy your day!!

Singing Like A Bluebird....

Alright, maybe not a bluebird. Alright, maybe not singing. But we "think" we hear more of a sound coming from my voice than before! That's a step in the right direction!!

So Monday was the day...the infamous "voice procedure." I didn't sleep very well Sunday night with the anticipation of this day looming over my head. What I should have done, was back in January when I first saw this doctor, and he suggested taking a stab at this procedure right then and there that day, was let him do it!! Cuz the anticipation and anxiety KILLS me!! That and the insurance company didn't want to pay for it.

Mom and Dad both went with me on Monday. Probably a good thing, because had I ever gone alone, I may have driven right past the hospital. We got there a little early and they took me right in. Good. Less time to think. Let's just do it. I explained my extreme anxiety and the speech pathologist that was helping with the procedure, politely smiled and said, "It won't be that bad." I then asked myself, "Yeah, sure, have YOU ever had this done to you?" I think that should be part of their medical education is to participate in the procedures that they perform on their patients. Anyone else agree??

Shirley, that's the speech pathologist, numbed my nasal passages for the scope and the back of my throat to begin the procedure. Then the doctor came in and said he had heard I was anxious, but that he had confidence in me and it would be over in no time. He explained again what he was going to do and we were off. Anyone real squeamish can skip the next part...

Dr. Saxon began with a topical numbing medication that he shot with a needle, up through the front of my neck, into my throat. It squirted this liquid into my throat and he asked me to cough, which spread it all over and almost instantly numbed the area. Shirley then guided the nasoscope up my nose and down my throat to give the doctor a view of my vocal cords. (And to think this used to make me gag and almost pass out?? Now I have a scope almost every time I go for a doctor's visit!) Dr. Saxon then took the needle, filled with a special gel-like substance, and now stuck this into the front of my neck and into my right vocal cord. Mom and Dad were both watching the screen and said they kept waiting for the needle to show up, but apparently it came from underneath and all you could see was the vocal cord "plumping" up. I knew nothing of this as my eyes were closed!

He pulled the needle out and had me make some sounds, then said he was half way done. Yikes! Another stick, here we go! Dad said I was moaning and it wasn't necessarily because I was in pain, although it was uncomfortable, I wouldn't say painful. I was concentrating on not coughing and choking and grabbing the doctor's hand and pushing it away! Another minute, and he was done!! It really wasn't as bad as I had anticipated. I wouldn't want to have it done every day, but now I know IF I have to have some adjustments or have it done a second time, I can do it and not pass out!

So there are really no restrictions for recovery...other than not to cough too forcefully or clear my throat too much. That's not to easy with a cold, but I am trying my best. I have more of a "raspy" voice now and people say they can hear a difference. The kids hear some difference, but not a lot louder than before. They say it can get hoarse for a few days until the swelling goes down, then hopefully, will get stronger as the days go on. I go back to Shirley in two weeks to learn some voice exercises and things I can do to prolong the life of this procedure. They can add more or do it again if we feel that it is helping.

We'll take it as another step forward and keep going. I'm still having a bit of a problem swallowing when I eat or drink, but I have to retrain my throat to work properly. Let's hope that gets better with time as well.

Maybe I'll see if they are taking auditions for the next Broadway show...or maybe I'll just enjoy the fact that I can actually talk to my children now and they can hear me!!

Strong....

It has been four weeks since I had my PET scan and got the all clear. I had a little "scare" this week with a little numbness in my tongue and a sore throat, but went in to see my doctor and all was ok. Unfortunately, it is really unknown what side effects I will feel long term as there are not too many of us that have been radiated as much as I have. My doctor is wonderful and said I have a "free pass" to come in and get checked whenever I feel something is not right. That makes me feel better and I hope as time goes on and things continue to go well, I will not panic over everything little twinge I may have.

We have also been fighting with my insurance company over covering my voice procedure and the injection that they want to do into my vocal cord. FINALLY, this week with Mom calling them every day (I can't talk, remember?), they have said that they will pay for the procedure itself but not the drug. I guess that's better than nothing! So after some scheduling issues on the doctor and his associates' parts, I have been scheduled for my injection on Monday, April 4th!! And to be honest....I am scared out of my mind!! But I have been through much worse and if this is FINALLY going to help me get more of a voice than I have had in over seven months, I will grin and bear it. Keep your fingers (and toes!) crossed it works!!!

I also have started Physical Therapy twice a week to loosen the strained muscle in my neck and shoulders. It is actually working and I am seeing some progress, although it is going to be a long, slow process before I get a lot of relief. At least I can sleep more than an hour at a time now!! And they sent me home with a neck (cervical) traction device to stretch out the muscles in my neck and takes pressure off my neck. Cameron thinks it is some type of medieval decapitation device! Kinda funny! He wants to know how much taller I will get using it!! And it he can grow taller, too!

Next weekend, Jen, Mom, Dad and I will be heading up to Vermont to attend a fundraiser for my cousins' Relay For Life Team. It is a Dance Benefit and Silent Auction to raise money for the American Cancer Society. Should be fun and I hope that by me being there, I can be an inspiration for those that are still fighting the fight.

I'll keep you posted on how the voice thing goes. It may not show too much success for a few weeks, so we'll see!!!

Until then, pray for the nice warm weather to HURRY up and get here!! I am sick of being cold!!!

A good friend shared a quote with me the other day and I want to pass it on...."You never know how strong you are until strong is the only choice you have."

A LONG Day with a HAPPY Ending!!

So today was my six month post-treatment PET scan. Mom came up last night to stay over since I had to be at Dana Farber at 7:15am for the injection for the scan, only to sit for an hour before the scan can be done. I was out of the scan by 9am. My appointment with the doctor was at 1:15pm. What to do?? What to do??

The entire Dana Farber facility has moved into the new Yawkey Building across the street from the old facility. We have watched this new building being built since my endeavor began last April. Everything except for the Nuclear Medicine Dept. and Radiation Dept. have moved into their new homes. So we began our day in the old Dana Building and then went to check out the new building after my scan.

It was quite confusing and strange to have everything in a new place, and as beautiful as the new building is, I am SO glad I don't have to spend a lot of time there! Mom and I tried to relax in the cafeteria and the lobby for a while before we headed upstairs to the 11th floor to wait for my appointment.

Doesn't it figure after such a long day already that my doc was running over an hour late with her appointments!! I have NEVER had to wait that long for her!! FINALLY we went in to the exam room about 2:15pm.

Mom and I were chatting and not even paying attention when Dr. Limaye poked her head around the corner and announced,"PET Negative!" THANK GOD!!! The scan was clear!! All the little things from the last scan that they were going to "watch" were gone!! Nothing there!!! All gone!!! CANCER-FREE!!!! We all cried and hugged!!

So now I can move on with the injection into my vocal cord and see if I can get some voice back. I also have to start some physical therapy for the stiffness and muscle tightening in my neck. I have another check-up in six weeks and if no issues, having two clean scans, she may wait six months to do another scan!!

Thank you to all of my family and friends for their generous thoughts and prayers during this difficult time. Someone up there is listening!!!

Two weeks from today is my 40th birthday.....Ugh, 40, you may think!?!? NO WAY!! I am THRILLED to be turning 40!!! This is the new beginning of the rest of my healthy life!!! 40 and FABULOUS!!!!

A New Year.....of Good Health and Good Luck....I Hope!

I had NO problems seeing 2010 go out and 2011 come in. In fact, I went out to celebrate it!! I joined a wonderful group of friends in Newport to see an amazing band that we love and say good-bye to a VERY catastrophic year for me. I must admit that I have shed a few tears for this past year, for the pain that it has caused me and my family, but I also shed some tears for the remarkable miracle that has blessed me as well. A year ago, I had NO idea what I would be up against...that I would be fighting for my life, AGAIN, and trying to win the battle against this HORRIBLE disease. But now, almost a year later, I can say I did it!!! I have again beaten this monster and pray to God EVERY night that I will never have to deal with it again.

As you can imagine, there is not a day that goes by that I do not get a pang in my neck or a twinge of my tongue that I think to myself, "Oh God...it's back!" In fact, this cold weather is doing me in! My neck gets so stiff and tight that it has actually scared me into going to see my doctor at Dana Farber a week earlier that I had an appointment for. I had a few days last week where my neck just didn't feel right to me, so I called my doctor in Boston and she saw me immediately to reassure me that all was okay. It was just extreme tightness and said my neck felt great to her and she felt no lumps or bumps or changes. She did give me a muscle relaxant that I have taken a few times and feel much better. I will see her again on February 23rd as well has have a 6 month PET scan from the end of my treatments that day.

Unfortunately, I still have no voice and can make no more sound than a whisper. This wouldn't be a problem if I were a hermit and lived alone and never left the house or tried to answer the phone. But as most of you know, this is NOT my life and I use my voice EVERY day, forcefully, for my job as well as at home with my two cherubs, who are NOT totally taking advantage of me after six months of no voice! Not MY kids!! Yeah right!!

Mom and I went to Brigham and Women's Hospital yesterday to meet with an Otolaryngologist. (Nice word, huh?) Essentially, he is a doctor that examines, diagnoses and treats disorders, diseases, and injuries of the ear, nose and throat. Dr. Saxon also specializes in voice and swallowing disorders.

A speech pathologist performed a Laryngeal Videostroboscopy (LVS) which provides a “slow-motion” view of the vocal folds as they vibrate. In other words, another scope of my vocal cords! What used to be my LEAST favorite test, has quickly become an every visit occurrence...however this one was a bit different. Here is the description I received of the actual exam....

"The exam is painless. During the exam, the patient is seated upright, with the feet flat on the floor and leaning a little bit forward from the hips. The voice-speech pathologist will hold the tongue gently with a piece of gauze and a thin camera will be placed into the mouth. This camera rests above the tongue and only goes as far back as the molar teeth. There is a special lens on the end of the camera that can see down into the voice box while the patient produces an /eeeeeee/ sound. On occasion, to get adequate pictures a flexible thin telescope will be passed through the nose into the upper throat to visualize the vocal cords. LVS films are reviewed in detail by an otolaryngologist and the voice-speech pathologist who performs the exam."

Doesn't sound too bad, right?? Here's how it ACTUALLY went down (Mom, correct me if I'm wrong)......Patient is seated in a VERY upright, uncomfortable chair, with feet flat on a little tiny footrest, leaning forward from the hips and tipping head backwards as far as possible. Keep in mind I have limited flexibility of my neck from all of the radiation treatments. So now that I am leaning forward and trying to tip my head back to look up and feeling like a seal trying to perform at Sea World, the speech pathologist grabs my tongue quite forcefully and proceeds to yank it from my mouth, or so it felt. Again, keep in mind I have had surgery on my tongue, a piece of it removed, and also limited movement and flexibility of it as well.

So now she has a hold of my tongue and is pulling it forward....while doing this, she sticks a long metal probe, about 10-12 inches long and 1/2 wide, into my mouth and towards the back of my throat to get a picture of my vocal cords while I "try" to say the /eeeee/ sound. If you read the description of the test about and how it is "supposed" to go, it says the camera "rests above the tongue to take pictures of the cords and does not go beyond the molars." Oh REALLY!! So why then EVERY time she placed it into my mouth, I gagged and choked and thought I was going to lose my lunch!? She even sprayed me with a numbing spray to take the edge off, but CLEARLY was touching the back of my throat. She did this test approximately six times....such fun!

The doctor then joined us and reviewed the video. He then stated that he is not really sure why my right vocal cord is not moving or moving very little. Obviously, it is from damage from the radiation treatments, but not sure if it is muscle damage or nerve damage. So there are two options which he says can "help" strengthen my voice "some," but it will never be what it was. Not easy to hear when you rely on your voice for your job.

The first option, which he seemed to be leaning towards, is an in-office procedure where he injects a gel-like substance called Juvederm, into the right vocal cord to "bulk" it up to be able to meet the left cord in the middle and vibrate to make a sound. There are really no risks with this procedure except that it may not be "enough" depending on the damage to my cord....or the fact that my insurance does not cover this drug at all!! Also, your body absorbs the substance somewhere between 3-6 months. It "may" be enough to trigger the nerve to regenerate, but worse case, it just doesn't work. Then they would wait the 3-6 months and attempt option #2.

Option 2 is a surgical procedure, done in the OR, under conscious sedation. They make an incision in the neck, then in my voice box and create a small window in the cartilage. The doctor can then "pop" in small pieces of a GorTex-like substance in various sizes to plump up the cord to meet the other one. This is more permanent, but is not guaranteed to work and has more risks with it, like obstruction of airway because of swelling which he didn't expect to be an issue. And the fact that anesthesia is involved as well. While this is more permanent of an option, like I said there is no guarantee and it can be removed if not working or they can change the size of the implant if need be.

So now we play the waiting game. There are some choices to be made and I was not about to make them in the office yesterday, as he was ready to do the injection right then and there. I am waiting to see what the cost of the injection will be and we will go from there. I do not want to have surgery, but this seems to be the most logical choice, so I have to weigh all the possibilities. I'll sleep on it for a few and talk to my docs at Dana Farber and go from there.

For now, let's welcome 2011, on this historical day of 1.11.11, and hope that it is better for all of us!! This is going to be a great year, I can feel it!! And a memorable one as well as I turn the big 40 in March!! I used to think that was SOOOO old and God, I NEVER wanted to turn 40! But now, I look back at my past and all I have been through and I thank God that I am turning 40!!! It's just a number and for me, another milestone!!!

Happy New Year everyone!!