Please..No more bumps in the road for poor Kris:-(

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!

Linda

I'm Down To SINGLE DIGITS!!!

So here we are....the 23rd of August. I am down to 9 more radiation treatments! But, like the rest of my "road to being cured," I have hit another "bump". My platelet count was too low last week, so I was unable to have chemo on Tuesday. They said this is not uncommon during the end of this treatment. Radiation is the most important thing now. The chemo just adds a "boost". Unfortunately, my counts have not recovered and are still low this week, so no chemo again. Unreal that it can be such a disappointment to NOT get chemo. But I have to work with my doctors and my nurses this week to get those counts back up to where they should be so I can get chemo next Tuesday, my last week of treatments.

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!!!

Lucky 13!

So, I have just 13 more treatments left!! I finally have the end in sight!! Was able to enjoy some vacation time with the family in Maine for the past two weekends. They stayed all week, but I had to come home on Monday for my treatments. I had twin lobsters both times I went up!! But apparently there are not enough calories or fat in lobster, as I lost three pounds this week. So now I have to supplement my meals with high protein shakes to try to maintain my weight so they will not put a feeding tube in.

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!!

FINALLY.....A Little Break That I Have Been Waiting For!

I know what you are all thinking....two posts in one week!?!? Wow!! But I just had to share my little bit of good news that I received from the doctor yesterday!

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.....

Second Week Down!!

So it's finally Friday and I have completed my second week of radiation treatments....only 25 days left!! Yikes!! Feeling pretty good so far, knock on wood. Drove myself to treatments Wed., Thurs., and Fri. Have a bit of a cold...runny nose and cough....who gets a cold in 90 degree heat and humidity!?!? making my throat feel a little funny...hopefully just from the cold and will go away. Not ready for side effects from radiation yet.

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......
Happy Weekend!!!

The Next Phase

Hello all!!
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!!
Stay cool!!

I'm Home....Again.....

So Round 2 in the hospital.....this time, a little shorter stay and a little much easier time.

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!!