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!!

Another bump in the road...

Kris was doing pretty good after she had a blood transfusion on Wed...hopeful that Thursday she'd be feeling much stronger with more energy. Unfortunately she spiked a temp of 102.4 and had to be admitted to the hospital immediately. Her oncologist thought her WBC was dropping...but after she and I spent 7 hrs. in the ER at Brigham and Women's, they determined her WBC was OK.

So now to determine the reason for the fever...which they are still trying to do. She still has a horrible cold and cough...which on top of all the lousy side effects of the chemo...it's hit her hard. Chest X-Ray ruled out pneumonia, CT Scan to see if sinus infection (this could be the problem), many blood cultures done...waiting on those results. They were to do more blood cultures tonight, so have to wait 48 hrs. for those results, she'll be in the hospital until at least Sunday.

She's not happy to be hospitalized again, obviously, but her oncologist didn't want to chance sending her home...only to have the fever return and Kris knows it is the best place for her....once again. So tests are being done and she waits for the results.

Jen was with Kris and the kids when she developed the fever, and she took Cam and Kacey home with her for a "sleep over!" I dunno how she and Dan do it! From 3 kids to 5 without batting an eye! Jen spent several hours with Kris this morning and then Chip and I went in this afternoon to keep her company for a bit. She was so tired as maintenance was trying to fix something in the shower until 2:30am!! Hope she's able to sleep better tonight!

Once again, I ask for your positive thoughts and prayers to be sent her way. She needs to get well and have a few weeks of feeling good before the radiation begins.

Linda

More Positive News!!

So as many of you already know, it has been a tough week...not NEARLY as tough as the first round, but I have had my share of troubles this week. The chemo meds made me really tired and weak and dehydrated. I also have a sore on one side of my mouth that is really bothering me, so it has been really tough to eat and drink too much. I have had to have hydration every day so far this week, but hopefully that is coming to an end. Because of the dehydration, my blood pressure kept dropping...was a whopping 77/44 on Saturday!! I also have had a cold for the past week, so I have cough that is driving me CRAZY! But I got some codeine today, so let's hope that works!

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....
Love, Kris

Round Three!!

So I began round three, the final round of my chemo treatments yesterday. I saw the doctor before the treatment and the tumor has shrunk tremendously since I saw her last week when she told me that it had grown!! It is amazing how fast the fluid was absorbed by my body!! My neck looks so different! Proof that this poison I am putting in my body is definitely working!!

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!!
Kris

Finally....

Well, in the grand scheme of things, I think I FINALLY caught a break! I had a CT scan on Monday and went to see the doctor today. She startled us by saying she had "mixed" news. The tumor has grown in size, but is now mostly fluid. The fluid is caused by the different treatments I have had and will eventually be absorbed by my body. The actual tumor looks like it has shrunk in size, but is now pushed to the side. We actually got to see the difference in the scans from March and from Monday. It was amazing to see the change.

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!
Kris

Feeling Pretty Good!

Well, as we start week 2 of the second round of treatments, I have been feeling pretty good. Had treatment on Tuesday and went in on Wednesday and Friday for hydration. Wasn't really too nauseous, but felt a little blah every day. I was still able to eat and drink every day, so that was good. I was nervous about this weekend as that's when the mouth sores set in last round. They did cut the third drug about, so this time I had no major mouth sores, just some sensitivity and tingling of my tongue from my prior radiation.

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!!!