Whoops!

So, apparently I have not updated my blog in a while!! My Mom keeps saying, "Kris, you really should update your blog so people can know what's been going on." And typical me keeps saying, "Yup! I'll do it tomorrow." Well, tomorrow is finally here.

Well, in my last post, I was going to have surgery on my shoulder. Well, that never and will never happen. It looks as though I have permanent damage to the muscles and the nerves in my shoulder and probably will never regain the strength or use of my right arm. I attend a pain management program and the doctors there have actually found nerve medications that take away the pain, so I am coping with everyday life by becoming more of a lefty and doing the best that I can. I find it difficult to do some things, like lift anything that needs two hands or blow dry my hair, but I am trying to adapt to my new "lifestyle." I am also trying acupuncture to see if that will help as well.

As for my voice, that is pretty status quot as well. It doesn't get any better, but doesn't get any worse either. I can be heard on the phone now for the most part, so that is good. My biggest issue lately is aspiration. Even though I still have my feeding tube and take NOTHING by mouth to eat or drink, I am still aspirating saliva and what not and have ended up in the hospital a few times with pneumonia. Most recently, just this past week. I went for a check up with my oncologist on Wednesday, and ended up being admitted with a 103* fever and a very low blood pressure. Luckily, they found out what it was quickly and I was only there 2 nights. I know now that I need to call my doc as soon as I have even a slight fever. She says this is going to be a common thing for me, so I need to catch it early so I don't end up in the hospital.

I was also accepted into a medical research study in November at Boston Medical Center to try electrical stimulation on my vocal cords. I have to stretch and do exercises with an electric stim device on my neck twice a day, for six days, for 13 weeks. It was a bit time consuming, but if it worked, it would all be worth it. I have had three swallow tests with the study and actually have one more in two weeks so they can compare data. The last two tests, I aspirated the liquids they gave me to try and swallow, so it is not looking too good, but we'll see what they say at the end of the study.

I am still not working. I think it would be extremely difficult to do my job being as restricted as I am. But I need to find something, as money doesn't grow on trees and I have two children and myself to support.

So that is where life stands right now. The kids absolutely LOVE school and are both doing very well. That is more than I could ask for. Kacey turned six in December and Cameron turns eight next Saturday. I am not sure where the time goes and how they grow up so fast and I never get any older. Amazing how that works. :)

I will try to keep my blog updated a little more frequently. I promise not to let it go 7 months next time, Mom!! Have a happy, healthy week everyone!

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."