Wednesday, November 24, 2010
Got the report for my PET scan today and it looks good!! They said there was a lot of surgical scarring and radiation scarring on the right side of my neck, but all in all looks good! There was a question of whether or not my vocal cord on the right side was paralyzed, but they did a scope today and both the surgeon and radiation oncologist said it was clearly moving and not paralyzed. So I will have to go to voice therapy to try and strengthen that. Worse case scenario is surgery down the road to help fix it, but therapy may strengthen it on it's own.
So I have a LOT to be thankful for this Thanksgiving, more than usual! Thank you to everyone....family, friends, my team at Dana Farber...for helping through this terrible ordeal once again. I pray that three times is a charm and that I am done with this dreaded disease once and for all!! Now I KNOW I made the right choice to go to Dana Farber!
Wednesday, October 20, 2010
Dr. Norris, the surgeon, walked into the room and says, "Well, I see we got some good news, huh?" I said, "What? The needle biopsy?" And he said, "Oopss....hope I was reading that right!" And he was!! Biopsy was negative!! No cancer!! YIPPEE!!!! And nothing else shows on CT scan or ultrasound. Final say will be the PET scan on November 24th, but they are not expecting to see anything and as of right now, I will NOT need surgery!! Thanks, Santa, for my early Christmas present!!
Dr. Norris did a scope of my vocal cords and said there was still some swelling and that they are a bit sluggish. They move like they should, which is good and means they were NOT paralyzed by the radiation. Wants to see me in a month to check them again and then will refer me to a voice therapist if needed.
I went down to the infusion floor where I had all of my chemotherapy and hydration to say hi to my nurse, Whitney. She gave me a big hug and said she has been thinking about me and wondering how I have been. She was such a HUGE part of my treatment and I am so thankful to have had such wonderful care at Dana Farber. I cannot tell you how amazing that place is and the people that work there, right down to the valets that park your car. I kid you not. AMAZING!!!
So for now, I will go about my AWESOME life and quietly whisper to my children that listen so attentively.....NOT!!! We are going to Vermont this weekend to visit my cousins and aunt and I am so looking forward to a weekend away without any worries!
Merry Christmas, Everyone!!
I hope Santa is as good to you as he has already been to me!!
Friday, October 1, 2010
Well, my 2 weeks off with no appointments went by REALLY fast!! I had my appointment on Wednesday with my oncologist. They are still pretty concerned because I still have no voice. I guess I hadn't put that in previous posts. I lost my voice the beginning of August when we were in Maine and it hasn't come back since. The doctors did not expect me to lose it because my voice box or larynx was not being radiated, but said it could happen. So my oncologist did a scope of my vocal cords on Wednesday (my FAVORITE thing!). Actually, it wasn't so bad. And she said that there was quite a bit of swelling and "sluggishness" of my vocal cords. Hopefully, they just need some time to heal. She has me seeing the surgical oncologist on October 20th to see what he thinks as another opinion. Hopefully my voice comes back, or at least starts to, before then! Not easy to raise a 4 1/2 and a 6 1/2 year old with absolutely NO voice!!
I have another ultrasound on October 12th to check on that "pocket" of fluid that I had drained. They want to make sure that it has not filled up again. They will drain it again that day if it has.
So another couple of weeks off. I am enjoying being home from work and feeling pretty good. LOVE taking the kids to and from school and doing the "Mom" thing. I think kids like me being home and being able to take them or pick them up from school. It's weird, though, because I have never been home. The only times I have been out of work was after giving birth or when I have been sick. But I cannot lie. I LOVE being home, but am looking forward to returning to work to regain some "normalcy" in my life. Not too quickly, though....:-)
I hope everyone is enjoying this beautiful weather and looking forward to Fall. Although today is 80 degrees with tropical rain and wind! Very strange....guess it is New England and ANYTHING can happen!!!
Until next time......
Thursday, September 16, 2010
So I finished radiation two weeks ago. But it has been a long two weeks. I didn't get my energy back right away. Actually, last week, I felt kind of crappy. I was tired, had no energy and no appetite. When I went to see the doctor last Wednesday, my blood counts were all good and had continued to come up on their own. But I had been spiking a low-grade fever every night. I was actually convinced that my thermometer was stuck at 99.2 every night! My doctor was still convinced that the spot they saw in my neck on the CT scan when I was in the hospital was an abscess causing the fevers, so she put me on an antibiotic and scheduled me for an ultrasound on Thursday. She also got me squeezed in for hydration that day because I felt like crap. I think my poor nurse, Whitney, got in trouble for trying to get me in!
Thursday morning, Mom and I went back to Dana Farber for an ultrasound. It is not a painful procedure, as most of you know, but my neck was pretty sensitive because of the damage to my skin from radiation, so it was a bit tender. The "pocket" of fluid was still there and slightly larger than when I was in the hospital a few weeks ago. My doctor and the radiologist that read the report with her were still convinced that this could be an abscess and causing my fevers, so they scheduled me to have a needle aspiration at Brigham and Women's Hospital on Friday.
So Friday afternoon, we headed back to Boston again for yet more fun! I am finally done with every day treatments and had to go back three days in a row!! I was extremely anxious about having this ultrasound guided needle aspiration. Just something about them sticking a needle in your neck made my stomach turn. But like Mom kept telling me, think about everything that I have been through. This would be a fairly quick procedure and over before I knew it. Ugh.
The technician took me in to do a quick ultrasound and take some pictures before the radiologist and doctor came in to do the biopsy. After the tech left, the radiologist came in and said she wanted to take a look. She looked at the "pocket" under ultrasound and said that it was not an abscess and didn't know why my doctor wanted a needle stuck in it. So she left again to call my doctor.
My doc decided she just wanted to know what the fluid was, so she asked them to do the biopsy anyway. So they "numbed" my neck some by sticking me with a needle containing a Novocaine like substance. Then stuck a fine needle in to withdraw some of the fluid or tissue from this "pocket". Before I knew it, it was completely drained! And it was so small, that they only got a 1/2cc of fluid out of it before it disappeared! There was not enough to send to pathology and to send for cultures to see if it was an infection, so because they didn't see any cells, they sent it for cultures.
I finally began to get my appetite back this weekend. I went down and stayed at Mom and Dad's because the kids were at the Cape. I finally started to eat and actually feel hungry. I even took a ride with them and the Lamontagne's to Providence to see the WaterFires!
I went back to the doctor on Wednesday of this week to have my labs drawn and check in. She was thrilled that I was feeling better, had more energy and had an appetite. She was also very happy that I had gained some weight!! My biopsy came back negative, so there is no infection. Still not sure where the fevers were coming from, but I haven't had one since I have been on the antibiotics. I finish that on Sunday, so we'll see what happens after that. I am still convinced that it is my sinuses since they are clogged up on every scan I have had.
So now I get two weeks off!! I don't have to go back until Sept. 29th! Yippee!! What will I do with all of my time!?!? EAT!!! Got to take both kids to school today and will pick them both up later. It is so nice to be home and be able to do the "Mommy" thing. I am usually at work, so that is one positive of being home! I love seeing their big smiles at the end of the day!
They scheduled me for another ultrasound in a month to check that "pocket" again. I also have my final PET scan to check my neck on Nov. 24th. I pray all is clear and I can go back to work and start to feel normal again. They say not to be surprised if I may need some minor surgery to "clean up" the remains, but I am praying it is all gone and all of those wonderful chemo drugs and radiation did the trick.
Hope everyone is enjoying this beautiful weather!!
Although I am sad to see summer go because I feel like I missed most of it, I absolutely LOVE the Fall and am looking forward to apple picking, apple pies, sweatshirts and football!!
Love to all!!
Friday, September 3, 2010
So now I have to rest and eat and take care of myself to get some strength and energy back. I will see the doctor next week and I am sure she will have me in periodically for hydration and blood draws, although my counts have been good and rising on their own!
Although I am not out of the woods completely yet, things are looking very favorable. Last we knew, the "tumor" was approximately 1cm and they really weren't sure how much of that was actual tumor or dead cells. It is a miracle that these drugs and radiation have worked and to think that, hopefully, I have beaten this disease for the third and final time.
I want to thank ALL of my family and friends.....you have ALL been through this struggle with me and I would not have made it through without all of the love and support. It would take me way too long to name everyone individually, and I would inevitably leave someone out, so I will just do a "blanket" thank you. You ALL mean the world to me and I thank God EVERY day for helping me through this AGAIN and for giving me the love and support I needed to get through it. I think if my parents don't see me and my kids for three months, they'll be happy!! Just kidding!!
It's time to celebrate another achievement.....although I don't really have much energy to celebrate right now. So hold that thought!! HUGE celebration coming soon!!!
Thanks again and Happy Labor Day Weekend to all!!
Lots of love,
Wednesday, September 1, 2010
Kacey starts back to Pre-school on Sept. 15th. She will be going all five mornings this year. She is so excited to go back, although, she wants to go to school with Cameron. Next year, Kac! Didn't meet the cut-off for Kindergarten! Although she is probably MORE than ready!!
So yesterday was my LAST day of chemo!! My blood counts have all come up on their own, so the doctor was thrilled with that. She said they were high enough for her to give me one last blast of chemo to help with the last week of radiation. She only gave me one of the drugs, but better than nothing, I guess! I will not miss that! My doc also said that she was impressed, overall, at how well I tolerated the treatments and how determined I was to get through them, despite the few bumps in the road. I told her there was no other way! I HAD to fight! I had no other choice! I knew what I had to do and I did it with as much dignity and strength as I could.
So as of right now, I have TWO more radiation treatments. I will continue to feel tired and have some tough days for the next two weeks, but should start to feel better every day. My doctor is going to keep a VERY short leash on me and already has me scheduled to see her next week and get hydration as needed to help me heal faster. Whatever I need to do to get stronger and feel better faster!! Although I must say, I will NOT mind not having to drive into Boston every day!! And I am sure my family won't mind either!!
Enjoy the rest of the week!!
And to my East coast family and friends, prepare for the wrath of EARL!!
Thursday, August 26, 2010
Chip took Kris into DF yesterday for her radiation and bloodwork....only to find that her platelets were extremely low and she had to have a platelet transfusion. She also was running a fever and her doctor decided she needed to get things under control and she had to be admitted to see if they could find if there was an infection.
She got into Brigham last night and Chip was with her for quite a while before heading home. As she truly has no voice at all...bearly a whisper...she’s been texting a lot!! She had to go for a CT Scan to see if that showed any infection...and no sooner returned from that and they said she needed an ultrasound of her abdomen to check her liver, gallbladder and spleen...and her liver function tests were somewhat elevated. (ultrasound was fine!)
She was trying to get some sleep, when a resident came in and woke her at 12:15am to tell her she needed to have a scope to check into her throat. Now I’m not a doctor but this does not seem logical to me at all....here she has a terribly sore throat and cough, having had 9 weeks of chemo and then radiation for the last 5 weeks which is making her throat worse...PLUS her platelet count is low (which clots your blood)....and they want to stick a tube up her nose into her throat???! They then say that they could see a sac of fluid in her neck in the CT scan where the tumor was and it *could* be necrotic (dead) cells OR it could be an abscess...so they want to do a needle biopsy in the am! And she couldn’t have anything to eat or drink in case this was done. NOT the way to have her gain weight!
As if that wasn’t bad enough, they come back in this am and say the scope has to be repeated because they were unable to visualize clearly enough the first time!! That was done but when they mentioned the needle biopsy again, she said “NO...not unless you talk to my doctor at DF!”
As she was texting all this to me, I told her to refuse any invasive procedure and I was calling her doctor at DF. I truly believe that Dr. Limaye was an angel that was sent to Kris to get her thru this terrible ordeal. She has been wonderful since Day 1 and continues to be! She called me back and was furious that this all happened. She was at Brigham in no time and straightened things out and made it clear what SHE expected during Kris’ hospitalization!
It’s so hard to see Kris in such discomfort...trying to eat or drink just a bit. The coughing continues...which aggravates her throat...and the mucus is blood tinged (thank you, residents). They say that it is from the throat irritation and not active bleeding....thank goodness.
So far, they feel her fever has been from sinus infection and/or the tiny sac of fluid in her neck (which "might" be an abscess)....both of which will be treated with IV antibiotics.
They are trying to figure out why they can’t get her blood counts up where they should be and hemotology will be consulted.
And on a good note...Kris now has 6 more radiation treatments to go! There is most definitely a light at the end of this very long tunnel....just more bumps in the road than we would’ve liked.
Kris, I so admire you and love you. You are going thru hell and you still keep that head up and your spirits up. Damn, I know how hard this must be, honey.
I know you have lots of family and friends that are sending good wishes and prayers your way!
Thanks to all!
Monday, August 23, 2010
My hematocrit was low again, so I got a partial blood transfusion today and will get the rest of it tomorrow. My WBCs dropped as well, so they are giving me a shot every day for 5 days to boost that back up. And I am on another antibiotic to prevent any infections. Didn't help that I had a fever last night, but it has gone away. Thank goodness! They are doing everything they can to get my counts back up and help me feel stronger so that I do not end up in the hospital again. Amen to that!
We also found out this week that I will not have a post-treatment PET scan until at least 12 weeks after the radiation ends. This is because the cells and tissues in the radiation field need time to heal and recover. If they did it too soon, it could show a false positive of the tissues that have been affected.
So I will take some time off from work this fall to recuperate and get my appetite and strength back. Hopefully my voice comes back quickly as well. It is really not effective at home or at work to have laryngitis so bad, I can barely whisper! My kids ignored me when I could talk...imagine life at my house now! Or better yet, a gym full of middle schoolers and me with no voice!! Yeah, right!
I hope everyone is enjoying the last few weeks of summer. It has been a beauty! Just wish I could have enjoyed more of it instead of watching it go by from a Dana Farber window. But it'll all be worth it in the end. When I have beat this DAMN disease again and for the last time! Take THAT, Cancer! I am ALL DONE with you!!!
Tuesday, August 17, 2010
Today is Tuesday and I see my oncologist before treatments on Tuesdays. Unfortunately, my platelet count was very low, so they had to hold my chemo this week. This is common this far into treatments, as the chemo does take a toll on your body. My liver function was a little off as well, so this break was probably for the best. Radiation is the most important course of action right now, so I am not getting discouraged. They will retest on Friday to make sure I am ready to go next week. My hematocrit was low last week, so I had a blood transfusion last Thursday. Now I might need another one on Friday. Whatever they need to do to keep my treatments going and working!!
On a good note, my WBCs were low last week, but increased slightly, so that count was good this week. This is also common with the chemo and radiation. Let's hope for good counts on Friday!!
Cameron starts school in two weeks. Can't believe my baby boy is going into first grade! Where does the time go!?!? Kacey starts Sept. 15th for her second year of preschool. She goes 5 days a week this year and is more than ready! So glad that both my kids enjoy school so much! Hope that continues!!
Hope everyone is enjoying their summer!! Could not ask for nicer weather, although I don't like the humidity so much and my lawn is now straw!! Oh well!! At least the sun is out!!
Wednesday, August 4, 2010
On July 9th, I had a CT scan to have a "baseline" after the chemotherapy and before the radiation treatments began. When I saw the doctor later that morning, she did not have the official radiology report, but looked at the scan with me and stated that the tumor had reduced greatly in size. That was all I needed to hear before heading off to a few days of relaxation in Vermont with the family.
Yesterday, I saw the doctor for the first time since beginning my radiation. I had been seeing the physician's assistant, as my doctor was on rotation at Brigham and Women's Hospital for two weeks. While she was doing her weekly check up with me and talking about any issues I was having, we asked if she had received the final report from my last CT scan. The report stated that the tumor had reduced to approx. 1cm! It was originally 5 x 3cm in size and involved my carotid artery. This newest report stated the new size and that it was hard to tell from a CT scan how much of that 1cm is disease because there is necrotic (dead) tissue. They would need to do a PET scan to find that out. I am sure I will have that when my treatments are finished. The report also had NO mention of ANY carotid involvement!
So some of my prayers have FINALLY been answered! I am happy for today and still have 22 treatments after today. I will battle through those and four more weeks of chemo and hopefully keep the side effects to a minimum. Like I told the doctor yesterday, "I am NOT done fighting yet! And I will continue to fight with all I have!"
I hope everyone is having a wonderful week and enjoying this beautiful weather!
Life is precious....take a deep breath and remember the little things that matter most!
They say, "It's not the number of breaths we take in life, but the number of moments that take our breath away." I truly believe.....
Friday, July 30, 2010
Kids come back tonight. They were in Hershey, PA with Chris this week. Sounds like they had a good week, but when I talked to them last night, they were excited to be heading home. Was a tough week for me as this is the first time they have been that far away from me, but I had enough to keep me busy going into Boston everyday. Looking forward to seeing their smiling faces and getting lots of hugs and kisses!!
So not too much to report this week. Finally bought a new laptop since my old one crapped out, so I am up and running again!! Didn't realize how lost I was without a computer until I didn't have on for a week!
Until next time......
Friday, July 16, 2010
Thought I would just update everyone on the next part of this long process. Got a few comments that I hadn't "blogged" in a while, so here it goes!!
The family and I just returned from Vermont. My kids, my parents and my sister and her family spent 5 days in Vermont for a little family vacation before I start radiation. It was a lot of fun, although 5 days with 10 people in one condo is a bit overwhelming! It was definitely chaotic at times, but was a lot of fun and I enjoyed spending time with my nieces and nephew that I don't usually get to see more than once a week if I am lucky!!
My good friend Maura and I are going to Hartford, CT tonight to see Tim McGraw tonight. Looking forward to it!! Then four of us are heading to the Comcast Center in Mansfield, MA tomorrow night to see him again!! My country bumpkin' weekend!! Yippee!!! I LOVE TIM!!!!
Tuesday starts the next part of my treatment. I have bloodwork in the morning and then will receive my first of the low dose chemo that I will be getting throughout the radiation treatments. They are using three different drugs to help "boost" the effects of the radiation treatments. They said that the side effects from this type of chemo should not be too bad. Then I have a "dry run" for my radiation at 2pm. The actual treatments start on Wednesday. These will continue for 5 days a week for about 6-6 1/2 weeks. Because radiation can effect my throat and swallowing, the doctors have decided that it would be best for me to get a feeding tube put in again. This was not the most comfortable thing, but definitely helped me to get through the treatments the last time. This will help me to stay hydrated and keep up my nutrition throughout the course of my treatments. It will be put in the end of my second week or beginning of the third week.
So I will be putting on my happy face at the beginning of the week and hold my chin up high and battle the next phase of treatments. This is not going to be easy as it is my third course of radiation and they are not sure what to expect. It is very unusual for someone to have three rounds of radiation to relatively the same area. But I am not giving up now!! The treatments are working and God willing this will work, too, and I will be on my way to being cured for good!
Hope everyone is having a wonderful summer and enjoying this heat!!
Sunday, June 27, 2010
As Mom posted on Friday, I spiked a fever on Thursday and my oncologist was worried about my WBC count dropping, so she wanted me admitted to find the cause of the infection. Turns out it was just a sinus infection. So I basically spent 4 days in the hospital because of sinusitis. They did have to run a ton of blood cultures to make sure that I didn't have any blood infections or anything more serious. And my oncologists wanted to watch those blood cultures for at least 48 hours to make sure everything was negative.
Well, that is great and all, but let me tell you a funny little story about what happens when they are waiting for "possible infectious" blood cultures to come back from the lab. They place these bright orange and green signs on the outside of your door warning people, including staff and visitors, that you "may possibly" have something contagious. That's fine, whatever, hospital procedure, I get it. But the one catch is that they should probably tell the patient this when they place these "warning" signs on the patients door. So here is how the story unfolds and the hints I should have taken or someone should have given:
- I am being finally being admitted at midnight Thursday night after spending 7 hours in the ER. (Part of this long stay in the ER
could have been that it was premiere night for the new drama series BOSTON MED and they all wanted to watch it because it
takes place at the Brigham, Mass General and Children's Hospital here in the fine city of Boston.....I didn't really care if I
watched it, I was LIVING it!)
- I get to my room, same floor as when I was admitted to in May, but bigger room. Ok, good.
- As the nurse is getting me settled into the room, there is an electrician standing in the hall looking at the "nurse call" light
outside my room. (Hint #1 in hindsight)
- Get all settled and Mom leaves to go home.
- Nurse asks if ok for electrician for to look at electrical box, which ironically enough, was in the shower in the bathroom. (Hint
#2, why is there an ELECTRICAL box in the SHOWER!?!?!)
- Fine. What the hell, I am awake anyway!
- So the VERY nice nurse gets my hydration started and my meds going and we're chatting and getting all settled in, when the
electrician comes out of the bathroom and says he can't fix it, they have to call "someone special" in. (Hint #3, someone
special?? At now 12:30am?? Hmmmmm......)
- So the nurse and I kind of giggle when he leaves about the someone special comment and she gets my vital signs and turns
the lights off so I can try to get some sleep.
- Well.....about 1 am, the door opens and the nurse comes in and says the "someone special" is here to fix the box in the
shower. This has now turned into a comedy routine and the nurse and I are laughing almost out loud.
- The very "someone special" comes in the door. I honestly can say I was not exactly sure WHO was going to walk in the door,
but low and behold, it was.........drumroll, please......ANOTHER ELECTRICIAN!!! WHOOOOOOOOO!! (Hint #4, first guy was
either not capable or scared to death of working with an ELECTRICAL BOX IN THE SHOWER!)
- So anyway, I'll get to my point.....this "special someone" didn't finish fixing the thing in the shower until 3am! This mysterious
"electrical box" ended up being the nurse pull cord in the shower.
- I FINALLY get to sleep about 3:30am, only to hear the door open....I look at the clock....6:30am.....I turn my head the other
way to see a nurse's assistant in a SURGICAL MASK and a special protective BRIGHT YELLOW gown there to check my vitals!
- Don't read the next line if you are easily offended.......
- My first thought........WHAT THE FUCK DO I HAVE!?!?! (This is where warning the patient before placing signs on their door
would have come in handy!)
- So as I begin to hyperventilate, the nurse calmly tells me that I do not have TB or anything like that. (Gee, thanks!) All of my
blood cultures were not back yet, so even though they did not think I had anything contagious, they had to care for me as if I
did until all tests came back negative.
- Last HINT....this one is for the hospital......Please inform your patients of precautions and hospital procedures before you scare
the shit out of them!!
So other than that, my stay was pretty uneventful. They finally decided that I had a sinus infection which was causing my fever and as long as I didn't spike another fever and all the cultures came back ok, I could go home. My own oncologist came over on Friday afternoon to see me and we discussed that it was the best place for them to keep a close eye on me and monitor everything and also keep me hydrated. She thought I could go home Sunday as long as I didn't have any more fevers. She then took my cell phone number to call me over the weekend as she was driving to New York where her husband is still completing his residency in a New York hospital. And damn if she didn't call me Sunday morning to make sure I was comfortable going home before she talked to the resident in charge of me to discharge me. She is just so caring and understanding. I am so lucky to have her as my primary oncologist.
I did end up having another blood transfusion on Saturday night because my hematocrit dropped to 24.9 and my oncologist doesn't like it to go below 27. But other than that, I never had another fever, my WBC was good, my congestion cleared up, my mouth sore healed and well....looks like I am on my way to feeling good and FINALLY enjoying some well deserved relaxation, if I don't say so myself!!
Thanks for all the well wishes......and keep 'em coming!!
Love to all!!
Friday, June 25, 2010
Wednesday, June 23, 2010
I met with my oncologist and the surgeon today. They are EXTREMELY encouraged with the change in my neck, which has continued to shrink even more than last week. The surgeon still thinks that it is too dangerous to have any surgery because of how close the tumor is to my carotid artery. The whole team feels that because it has responded so well to chemo that it will respond just as well to radiation and chemo combined.
So, with that in mind, I go next week 6/29 for my radiation planning and then have TWO WHOLE WEEKS OFF to relax and EAT before treatments start on July 20th. I will DEFINITELY be taking advantage of these two weeks of feeling good to eat and gain some weight back...I don't think I've been this skinny since high school!! Nice to be skinny, but NOT the way I would have chosen to do it!!
So that is it from my end!!
Until my next post....
Wednesday, June 16, 2010
The doctor decided to add the third drug, the 5FU, back into the mix for this round. She cut the dose to 60% hoping that I do not get the mouth sores like the first round. My fingers are crossed because that was NOT fun!!
I met with the radiation oncologist today to discuss the next step in the plan. He suggested that I meet with the surgeon first to make sure that radiation was the best next approach. He is not sure, because of the shrinking of the tumor, if it would be best for some surgery to remove some of what is left so that they do not have to radiate such a large area since I have had radiation to my neck twice before. But we'll see what the surgeon says next Wednesday, June 23rd, when I see him.
If we go ahead with the radiation first, I will probably begin treatments on July 20th with a "dry run" to make sure everything is correct and treatments would begin on the 21st. Of course, because of the tricky placement of this damn tumor, there are risks with radiation. As with anything medical, there are risks, but they love to scare the crap out of you. I just have to remember that they are uncommon, but the pros of the treatment outweigh the cons, so what else am I supposed to do?? Don't have many options to get rid of this once and for all.
So I will keep truckin' on my journey and take things one day at a time. Please keep all of the love and prayers coming as they are obviously working!!
Thank you to all of my family and friends for their constant support!! It is much appreciated!!
Love to all!!
Wednesday, June 9, 2010
The plan is we will continue with round 3 of the chemo treatment next week. They will also add back in the 5FU drug but at about 60% of the dose, hoping I do not have the reaction I had the first time. The doctor said she would also have a low tolerance for putting me in the hospital this time. After I finish the chemo, I will probably have radiation with low dose chemo at the same time to make the radiation more effective. But that would be after a 4-6 week break from the chemo.
So, I am not out of the woods yet, but at least we finally got some positive news! My angels are definitely watching over me today!
I hope everyone is doing well!!
The kids and I send our love to all!
Tuesday, June 1, 2010
The kids and I went down to Rhode Island to Mom and Dad's for the long weekend. It is easier for them to take care of all three of us down there since we all have a bed to sleep in. Dad took kids to four different playgrounds on Saturday and to the pet store to look around while Mom and I took naps. We just hung out for the afternoon and relaxed. Sunday, Dad took me into Boston for another 2 liters of fluid and then we went to Jen and Dan's for a cookout in the afternoon. Was fun letting the kids all play together and enjoy some fresh air. Jen made homemade guacamole that was to die for as usual. It is weird what you may crave while getting chemo!!
Monday, Mom took me in for more hydration. Amazing how much better I feel when I have fluids on board!! Dad went with Jen and Dan and the kids to Roger Williams Zoo. They had a great day despite the heat. Thanks, Ah-Ooh, D and Pa!
We had an early dinner and headed back to Natick to start the week. I have blood-work and hydration on Wednesday and to touch base with the doctor. Hopefully my white blood count or red blood count has not gone too low. This week should start my upswing for feeling good.
I have a scan on Monday, June 7th and meet with some of the docs on my team on Wed., June 9th to decide how to proceed. Depending on what the scan shows, we will move on with Round 3 of chemo or go to radiation and chemo, I guess.
Guess all in all, things have been fairly well tolerated, other than my one bad week. One positive is that it only takes my 5 minutes in the shower now......not much hair left to wash!! And even though I may be bald, Cameron keeps telling me I am beautiful and that's all that matters!!
Love to all!!!
Tuesday, May 25, 2010
So she has eliminated the third drug (the 5FU) from my plan. This is the drug that made me so sick the first round and the drug that gave me all the mouth sores. The doctor does not want to take any chances this round and there is no proof that this drug adds a tremendous amount to the treatment, so she thought it was best to eliminate it.
They are staying on top of all of my symptoms this time and doing many things this cycle to keep my white cell count up and hope the sores do not return. I also have a scan scheduled for June 7th and to meet with my treatment team of doctors on June 8th or 9th to see what the next step will be. If there is a change in the size of the tumor, they will probably go on with the third round of chemo and hope for more. If there is no change, then we will probably be looking at radiation and chemo together to shrink the tumor. I won't know until I have that scan. Please pray for a change!! I need to catch a break at some point!
So Mom and I are having Chinese food for the second night in a row. An expensive craving, but tastes good right now! She stayed with me last night and took me for treatment today. Jen's coming over to help with the kids tonight and take me for hydration tomorrow. Then Dad will come up to help tomorrow night. So thankful for such a wonderful family that constantly change their plans to help me, Cameron and Kacey. Chris and his parents had the kids the past two nights and also took kids to TBall tonight. Thank goodness for their help as well. Couldn't do this without everyone's help.
Hoping to have a good couple of weeks and an easier time than last cycle.
Keep your fingers crossed!
Sunday, May 23, 2010
This weekend was the American Cancer Society's Relay For Life here in town. This is the sixth out of seven years that we have participated in this event, taking a year off after I had Kacey and had just had surgery on my tongue and neck for my second bout of cancer.
This is always an emotional event for me and my family and friends. It was even more emotional this year as I participated while ending my third week of chemotherapy treatments. It was also quite a shock as family and friends came from all over the country to support and walk with me. My brother-in-law Tim, my sister-in-law Erin, and my brother-in-law Jeff came from California for the weekend to walk with me. Uncle Jim (Chris' Mom's twin brother, who is also undergoing treatment for bladder cancer) came from New Hampshire with his son Jim to walk the Survivor Lap with me and hang out for the afternoon. My Aunt Sue and Uncle Fred came from Connecticut for the day. My Mom's cousin Carolyn and my cousins Courtney, Andrea, and Andrea's son Carver surprised us from Vermont. My Aunt Carol and Uncle Bud came from western Mass. to join us. My cousin Meredith was there with her beautiful smile as well as my best childhood friends Kathy and Michelle and their kids as well. My dear college friend Jay (aka Sheesh) arrived bright and early to help set up and stayed straight through until the end. My close friend Maura and her three kids arrived before the survivor lap to keep the party going. My sister's friend Holly (and my dear friend as well) and her husband Steve and their daughter Skyler came to walk for the afternoon. My in-laws were there for the entire day and night providing me with more love and support. And how I could I forget my Mom, Dad, sister Jen, brother-in-law Dan, and my wonderful nieces and nephew, Peyton, Emery and Cole who were all there from early morning until the wee hours of the next morning, holding me up and providing more love and support to keep me going.
My last "shout out" goes to my two beautiful, loving, caring, most amazing kids in the entire world, my sweet Cameron and Kacey. They held my hand (or my leg!) through it all, from start to finish, sometimes literally holding me up. They may be only 6 and 4 years old, and may not completely understand what the heck is going on in all of this, but they always know the right time for a hug or a kiss for Mommy....and that makes all this fighting worth it. I love you Cameron and Kacey! You are Mommy's inspirations and my angels and will get me through this no matter what because of you both!!
This is such an amazing event that I take great pride in participating in every year. This was a more difficult year, as I was just about able to make the Survivor Lap and Team Lap before I needed to sit down. Still not back to my full energy level yet after being knocked down last week. I was also honored to be asked to hold a torch to lead the Luminaria Lap at dusk to remember those that we have lost to this horrible disease and honor those that are still fighting.
I also decided that it was time to shave my head, as all of my hair is falling out and clogging the shower drain, not to mention getting all over everything. There was a salon at the Relay the was doing cuts for Survivors and Lauren shaved my head for me. As emotional as it was, it is much better and now there are only tiny pieces to fall out until I am smooth as a baby's bottom. I had such support in doing this that my son Cameron and my brother-in-law Tim also decided to shave their heads so I wouldn't be the only one. Such love! You know what they say, "Bald is beautiful!" We'll see if "they" are right. :)
I just want to thank ALL of my amazing family and friends who gave up their plans for the weekend to come and stand by my side in this remarkable event. Team Tigger raised so much money for cancer research and for the American Cancer Society. Thank you to those that donated to Team Tigger but could not be there with us this weekend. We greatly appreciate your donations that go to such a wonderful cause. I am so proud of my team and hope that very soon a cure for this horrible disease will be found so that no one, including myself or anyone else, will ever have to go through this hell again. As I have said before, I am stronger than this damn cancer and I will fight head on until I beat it again.....it's just nice to have love and support along side to help!
I love you all, Team Tigger!! Thanks for making me proud!!
Thursday, May 20, 2010
Kids are glad to be home and sleeping in their own beds. I thank Chris and his parents tremendously for taking care of them for the past week while I was feeling so low. My Mom and Dad and Jen finally all got to sleep in their own beds last night as the kids and I were alone for the first time in weeks. Felt good, but it is so nice to have someone here to help if I need it. I thnak them with all of my heart for being here every night for the kids and me. Thank goodness both kids slept well, as did I, and we had a great night.
Maura took kids to swimming today and then Grandma and Granpda took them to TBall. Cam was excited as he is playing the Red Sox tonight and was CONVINCED they were going beat them. Little does he know every TBall game ends in a tie, but go get 'em, Buddy!!
Getting ready for the Relay For Life this weekend. We will be walking from noon on Saturday until 8am on Sunday morning at Natick High School if anyone wants to swing by for a visit. We are Team Tigger, bright orange shirts, can't miss us!! Should be a beautiful weekend, come on by!
My hair is really beginning to thin. Everytime I run my fingers through it or wash it, it falls out in handfuls. Only a matter of time before this head is bald and beautiful! Guess there isn't much I can do! It's just hair and it'll grow back. Wonder what color it'll be or if it'll be straight or curly?? As long as it's not gray!! But there are ways around that, too, I guess!
Thank you again for all of your prayers and well wishes!!
They are working, I just know it!!
Sunday, May 16, 2010
As most of you read from my Mom and Jen's posts, my white blood cell count plummeted by Wednesday and that just increased the sores and the mucositis in my mouth. Nothing was able to heal as my count was so low. And I was also running a fever of 101. Then my RBC count began to drop. There was talk of a possible blood transfusion, but luckily those counts came up on their own.
By Friday, all blood counts began to rise and I finally began to feel better. I had been hydrated and medicated and was finally able to open my mouth and actually talk! I know, must have been a nice quiet few days, huh, Mom!?!?
Saturday morning, my stomach chimed in stating that it was quite sick of being empty and was in need of some food. So I ordered chicken broth and cream of wheat for breakfast. First of all, what was I thinking ordering cream of wheat?? I don't like that when I HAVE an appetite, never mind feeling queasy! So I ate the chicken broth and it felt pretty good. By lunchtime, I needed more "real" food. So I ordered a grilled cheese, some apple juice and a butterscotch pudding. Jen walked in while I was eating my grilled cheese and almost fell on the floor! She was so glad that I was finally eating!! Then, five minutes later, one of the doctors who admitted me walked in and had the same reaction. "You really want to go home, huh?" he asked. I had also ordered mashed potatoes, but they didn't have much flavor, so I skipped those.
Mom and Dad were with me when I ordered dinner Saturday night. The beauty of this hospital is that you can order WHATEVER you want off the menu WHENEVER you want it. So I ordered broccoli cheese soup, a baked potato, and chicken pot pie for dinner. The pot pie was not very good, so I moved on to the broccoli soup. That was very good.....very thick, but very good. And then I ate the tiny baked potato with some butter and that went down well, too.
So well in fact, a little later, before the kitchen was to close, I ordered another baked potato. But unfortunately, when it arrived, I cut it open and the entire center was black and rotten! Oh well, guess I really didn't need that second potato!!
Sunday morning arrived and now I was thinking about breakfast. All of a sudden, food was my main focus. The pancakes looked good, along with a banana and a glass of apple juice. So I started head first into the pancakes, only to remember that hospital food always sounds and looks better than it actually is. They were quite dry. I ate some, finished my yummy banana, and drank my juice and waited.
One of the interns came in and said that if I was able to tolerate food well today and also my meds by mouth and not IV, I could go home if I was ready. He told me to take my meds, order something for lunch and we'll see how it goes. So I ordered another grilled cheese, some fries today, and another bowl of that yummy broccoli cheese soup. Yup, I can eat....now send me home!!
So I was finally discharged! I am home with "light" pain meds until the rest of my mouth heals, but feeling MUCH better. My oncologist is meeting with the "team" to discuss my next round of meds so that this does not happen again. Yes, another slight detour in my plan of attack, but I am back now!! And I still have hair!!
Saturday, May 15, 2010
Wednesday, May 12, 2010
Her white blood count was already very low, and she also started with a fever today while at the hospital, so they are worried of a possible infection. Luckily she was already at the hospital though, so they were able to do blood cultures and start her on IV antibiotics right away.
Her doctor is so very sweet and was right there with Kris today. She said that she needs to review her case and make some substantial changes to her treatment plan now. She says that she always tells patients about these possible reactions/side-effects, but they typically don't happen. Well, lucky Kris got them all, and really badly :( She said that it's not their intent to have her in this much pain though, so although they have to be aggressive because of the cancer, they will get things under control so she feels better and is able to keep fighting without so much pain and discomfort.
So although she is not too happy to have to be in the hospital, she knows that it's the best place for her right now to try to get things under control and her feeling better. I had to leave late afternoon today, but Mom and Dad were able to stay with her for awhile tonight. Hopefully she will only be in there for a few days, but we'll have to see how things go.
Sorry that I didn't add any humor in my post, like Kris and Mom try to do, but I am not finding this very humorous right now :( So hard to watch her go through this, but we know that she is stronger than this damn cancer...and she WILL start feeling better very soon and continue her fight!
Please continue to keep Kris in your thoughts and prayers!
Monday, May 10, 2010
Saturday, May 8, 2010
Well, Day Four wasn't my best. Got up feeling rather yucky and even getting some food in my stomach, I was still quite queasy all day. Knock on wood, I haven't gotten sick yet. The anti-nausea meds have been working!! Tried acupuncture on Friday afternoon. Was recommended for nausea side effects and such from chemo. Felt pretty good there, but was weak and pokey when I left. Guess I'll try it again and see how it goes!
Thursday, May 6, 2010
I hear that people are emailing and calling wondering where my blog updates are everyday. If I do this everyday, people will be sick of my poor humor after nine weeks!! So I will update every few days unless there is something fascinating to report. Mom or Jen may add some notes if I am not up to blogging as well.
Tomorrow, Friday, I am meeting with an acupuncturist to see if that will help some of my chemo side effects. I am also going to get my new "short" haircut to prepare for the total hair loss. I will post pictures for you curious fans!!
Other than that, a pretty uneventful day. Mom and I hung out, I took a bath, and a couple of naps. Had a pretty good day all around. And who says you can't eat mashed potatoes for breakfast if they taste good!?!?
Night all!! Sleep well!!
Tuesday, May 4, 2010
Friday, April 30, 2010
I got a call today from Brigham and Women's Hospital's Day Surgery Dept. this morning. I am having my Porta-Cath inserted into my chest on Monday morning at the UNGODLY hour of 6am!! I think my Dad is rethinking his choice to take me into Boston that day!! But the good thing is that we will be in and out early, so traffic either way. This will make it much easier to give me my chemo meds, draw blood and hydrate me without having to stick a vein every time.
And then on Tuesday, I meet with my medical oncologist to sign the consents for the chemo and I begin my first round of treatment. Not sure how long it takes before the effects begin to set in, but I am trying to be as optimistic as I can and stay positive right from the beginning. They also said my hair would begin falling out within the first 2-3 weeks, so I am going next Friday to get my new "do"! Gonna cut it REAL short so it is less dramatic when it falls out, both for the kids and me!! I'll post a pic when I do!
But until then, Jen and I are taking Cameron, Kacey and Peyton away overnight tonight to CoCo Key Indoor Water Resort for a few days of fun! Think we all need it and will be a time time away before all of the treatments begin.
I want to thank everyone again for their positive vibes, messages and prayers!! Please keep them coming as they are working wonders apparently!!
Love you all!!
Wednesday, April 28, 2010
The Farber is an incredible place. I was amazed the moment we walked in the door. We met with a team of doctors, including radiation oncologists, surgical oncologists, and medical oncologists. They did a full “background” check and got my history. Then the team did a physical exam, including a scope of my vocal cords and nasopharynx (THAT was fun! Yuck!). After that they left to discuss my case.
Everything changed the next time the door opened! The surgical oncologist and radiation oncologists came back in and my worst fear came true! They had decided as a group that the carotid surgery was NOT the way to go and had too many risks. This is what I had felt since day one and was not confident about the surgery at all!
So they were now suggesting that I begin nine weeks of very aggressive chemotherapy, three cycles, of three very strong chemo drugs (Cisplatin, Taxotere, and Fluorouracil, also called 5-FU). They have had much success with treating squamous cell carcinoma with this regiment and feel that it will respond well to the drugs. I have also never had chemo before so they think I will tolerate it well, being young and healthy, and that it will either eliminate the tumor or shrink it enough to then do a less risky surgery and treat it further with radiation and a lesser dose of chemo.
So now, as I looked at my Mom and Dad who were sitting in the room with me, I was so confused and flooded with information, I did not know what to do! But for some reason, a strange calm came over me and I knew the choice I had to make. Since the day the doctors at Mass. General suggested the surgery, it had not sat well with me. I never ONCE had a positive feeling about this surgery option and actually had more negative feelings than I care to share. There was NO way I could go in for MAJOR surgery, as risky as it would be, feeling the way I did.
I finally had a plan that I was willing to try and actually felt GOOD about! Sure, I am not thrilled to deal with side effects from infusion chemotherapy for nine weeks. Nor am I thrilled to lose all of my hair, but it will give me an excuse to buy some new baseball hats!!
So after talking this plan over with the doctors at DF quite extensively, I decided that in my heart I KNEW that this was the “better” choice for me. So I go back to DF tomorrow, Thursday, for a full-body PET scan to make sure this damn disease has not spread to anywhere else. Then I go on Monday to have my Porta-cath inserted in my chest for the chemo infusions. And at 7:45am on Tuesday morning, I begin my treatments.
I also know that I cannot do this alone with two young kids at home. They say I'll be too fatigued to take care of myself, never mind Cam and Kacey. So Mom has "graciously" offered to move in when necessary. Oh what fun that will be!! Just kidding Mom!! I love you and Dad and couldn't do this without either of you!! And I am sure Jen will be there when my parents are not. Not easy for her either with three kids at home under 3 1/2! Love you for that, Bub! The kids will also be staying with Chris and his parents a bit more than usual, and I thank them greatly for that as well. I am so lucky to have such a wonderful support system of family and friends that will give up things in their own lives to make sure I get better and my kids are taken care of.
I feel like I have been given another chance. I feel relieved that I am not thinking about the surgery now. I finally feel like I have a plan, that I have some control over. I finally feel like I have some peace and that I can now move forward and get rid of this disease once and for all! Is it the right choice? Who knows! But it feels like the “better” choice. And a choice I can live with….and hopefully for a long, long time!
Saturday, April 24, 2010
But unfortunately, I still do not have a surgery date or dates for my pre-op tests yet. I called three doctors this week and have heard nothing. So I am going to enjoy my weekend and get on those docs Monday for answers. This waiting is killing me and my anxiety is starting to get the best of me. I need to get this surgery over with and behind me so I can move on to the treatments and the part of the process that I feel like I have at least some control over.
I also have an appointment at Dana Farber on Tuesday afternoon for a second opinion. I can't see them telling me anything too different, but more for my peace of mind that I am making the right decision, if and when they finally decide to do this surgery!
So today, the whole family is coming to weed, edge and mulch my gardens! They are wonderful and I can't thank them enough! One less thing for me to worry about this Spring.
Thank you for all the well wishes, positive vibes and prayers.....I appreciate them all and love you all very much!!
Have a super weekend!!
Sunday, April 18, 2010
My first battle began in March of 1998 when I was diagnosed with Hodgkin's Lymphoma at the age of 27. I felt a "lump" in my neck, that a year prior they told me was mono and never really went away. I had the lymph node removed and it was positively diagnosed with Hodgkin's Disease. I underwent weeks of radiation therapy from my diaphragm up to my ears. My throat got so sore that I was unable eat or drink. As I finally finished treatments, I was then admitted to the hospital because my digestive system was shutting down and I had lost 30 lbs. in less than 2 weeks. The doctors finally decided to insert an NG tube through my nose to feed me nutrients. Within 24 hours, I was a new person. The tube was a removed a week later and I finally began my recovery.
In November of 2005, I had what I thought was a canker sore or "ulcer" on the right side of my tongue. After visiting the dentist, it was decided to wait until after Kacey was born in December to further any decisions. In March of 2006, I had my first biopsy of the spot on my tongue. It came back with "abnormal" cells, but nothing cancerous. The sore did not heal and I then returned to the oral surgeon for another biopsy. After much convincing, he finally did another biopsy, telling me all along "that if I was his sister he would say that everything was okay and not to worry about it." Glad I was NOT his sister and demanded that he did another biopsy because this one came back positive for Squamous Call Carcinoma. I had surgery in April of '06 to remove a portion of my tongue, where the "host" tumor was, and 17 lymph nodes on the right side of my neck, one of which was positive for squamous cell. After almost 8 weeks recovery, I began external radiation to my tongue and neck. This went on for 23 treatments. I had a G-Tube placed into my stomach because my throat got too sore to eat and I did not want to get too weak that I would not be able to continue treatments like with my Hodgkin's treatments. After a few weeks of recovery, I had surgery again to place 10 catheters up through my chin and into my tongue. Small radioactive capsules were then threaded into these catheters where I was placed in isolation for 4 days to receive high doses of radiation internally into my tongue. Most people would have enjoyed four days of isolation, away from work and the kids, but keep in mind I had a 2 1/2 year old and an 8 month old at home. This was no vacation. I finally recovered from this treatment and returned to work in October of 2006.
I have been "cancer-free" for almost 4 years, when I felt another "lump" above my collar bone on the right side of my neck in February of this year. After 2 weeks of "waiting" to see if it was just an over-reactive lymph node, I went to the doctor, who was convinced it was nothing more than a reactive lymph node or an infection. Boy was he surprised when I had a CT scan that saw a suspicious mass and a needle biopspy that confirmed that is was again squamous cell.
This fight has already began to prove that it is going to be "different" than the others. Unfortunately, it seems that the tumor has attached itself to my carotid artery. After many appointments with my oncologists, head/neck surgeon, and vascular surgeon, it has been decided that it is my best option to remove the tumor and a section of my carotid artery on the right side and hopefully bypass the carotid so I do not lose the blood flow completely. As risky as this surgery is, it is my only choice to rid my body of the cancer and "cure" me, not just prolong my life. And with two beautiful angels at home that need their Mommy, I must chose the best option for a long life with them.
I do not have a surgery date yet and have to have many pre-op tests done before the surgery can take place. I am hoping to hear from the doctors this week to begin the scheduling of those tests so I can get this surgery behind me and continue moving forward. After a 4-6 week recovery period after the surgery, I will begin a 5-6 week period of external radiation and probably a low-dose chemotherapy once a week to increase the effectiveness of the radiation.
I am holding my head high and trying to live each day with a smile on my face. I am scared, as you can imagine, but I know what I have to do and want to prove to myself and everyone else that I can beat this damn disease once and for all...or is that thrice and for all!?!?
Please keep me and my family in your thoughts and prayers....
I am a FIGHTER and I will SURVIVE!!!!