Isabel Update

Isabel is currently going through a 36 hour treatment. She had test preformed today to make sure her heart was strong enough to withstand a certain chemical administered in this treatment. The last 36 hour treatment, they pulled this chemical because her heart wasn't strong enough. Today she passed and will be administered the chemical. If memory serves me correctly (lately it hasn't) this should be the last time they administer this specific drug. Which will make future 36 hour treatments, more like 24. She is so close to completing her cycles of treatment. She won't be able to start school with her class mates, but it is looking like it could possibly be as early October for her to be finished and going back to school. She currently has her feeding tube out. She has still had time for fun!

Last Chemo

Ahhhhh, need I say more.

How is Nic feeling? Well that question has 2 answers.

1- he is feeling crappy, how could you not after chemo.

2- he feels great. having a party in his head, waiting for his body to join in.

His counts were border, so the doctor let him decide if he wanted the shot or not. We were concerned with his brothers wedding coming up, lots of germs. As the conversation progressed it was decided that the shot adds to Nic's mouth sores, by like 70%. & well there you have it. No shot.

He will have a PET scan in about 2-3 weeks & then he will have his port taken out.

He will then have scans every 3 months for 1 year

He will then have scans every 4 months for 1 year

He will then have scans every 6 months for 1 year

He will then have scans every year, for the rest of his life.

~No, this is not multiple choice, this is how it is.

Being that Monday was Labor day, it made treatment day quite busy. Not to mention that one of the nurses was sick. Sick nurses can't be around cancer patients, so she had called in. There are 12 chairs. There were 10 patients (normally there are 3 or 4) A few had to be turned away because their counts were too low or their body was in no shape to handle it. Had they all been able to have a chemo treatment, not sure what they would have done. They were also taking pictures for a new brochure. I normally don't sit with Nic through his full treatment, I go to the appointment part, then leave & go back to work & go pick him up when he is done. Being that this was his last treatment, I decided to stay. The Lady that was on my other side was coming back. She had beat breast cancer, but when she had her first 3 month scan-- bad news. It was back in 3 new places. She was a school teacher, & is a "head witch" at fright mares, and has been for the last few years. She was also in suzical the musical, as grandma who. She turned to me & was telling me her story. She said that she debated treating cancer this time, she decided that she had lead a good life & if it was her time, it was her time. Her sister convinced her to go ahead with chemo. Why not live another 5 years, & if that is all you get, won't it have been worth it? Wisdom. It was that point that I decided to break out my home made Mrs. Fields cookies to celebrate Nic's last chemo. She then kind of changed her tune. "Oh" she said. "Well Maybe we'll see you back here in another 3 months." (Okay--that was pretty negative.) The Nurse said "He's not coming back." the witch lady responded with "Why is he so lucky, why did I have to come back". silence.. how do you answer that. & why would you ask it.

Looking around I noticed that Nic was the youngest in the room by far. Would she really wish his cancer to come back to make her feel better? Hmm, didn't talk much to her after that. She was really fun to talk to, until the hopelessness & negativity came through.

At the end of the treatment, all staff, yes all of them- came out & sang happy last chemo to you, in the tune of happy birthday. I tried to get it on my phone, but I only got the end of it, & I moved my phone too much, so it didn't turn out.

Then I wondered to myself, how often do they get to sing that song. Is it offensive to anyone battling it for the 3 or 4th time, or those who are only doing it to prolong their life.

I was happy to walk out of that office, hoping to never return. The care we had there was excellent. I would recommend Dr. Stinnett & Nurse Lisa to anyone. But really, I hope I never have to go there again. I have thanked God daily if not more often for giving my family the strength to endure, and for the simple fact that I can still wake up next to my husband, and he can attend all the little league games. I have thanked him for the love and support we had from our wonderful family and friends. The last 6 months have been an earthquake that disrupted our lives, and rather than being swallowed up in the depths of despair. We made it through, and couldn't have with out you all. Please know how much we appreciate you all, and always will.

Treatment # 11

One more left-praise God!

We got there, he was doing fine. The doctor said his counts should be fine, especially after being on prednisone. Then they took blood to determine if the counts were high enough that he wouldn't need the shot. His counts came back at .8. They ran it again to make sure. The nurse told us that .8 was so low that they couldn't administer chemo. Sure there is a light at the end of the tunnel, but the last 30 days, I think they have been doing construction & we've had to take a detour. She said she'd have to get the doctor to approve it. We went from sitting there, being happy, making jokes, to sinking down in our chairs thinking negatively. The nurse said his levels had to be at a 1.5 in order to receive chemo. He was able to get the treatment. I think the Doctor secretly knew I would give his house a god toilet papering if he denied it. Or that maybe we'd never come back. So yea, we had the treatment, & Nic had to have the shot- hopefully the last one ever for the rest of his life. His nausea has been terrible, so this treatment and the last one he was given a sample medication. He takes one pill right before treatment, then one the following day & again the following day. This has been a miracle pill for him. It doesn't really take care of all of the nausea, but it keeps him from throwing up. For the last treatment I have a prescription for these pills. The nurse warned me, not to pass out when it comes to paying for this prescription... I have yet to take it in. I've got a week and a 1/2 to try and brace myself. I have good insurance, but still, I am wondering it will be anything like the $6000.00 shot, or will it be more like $150.00 for 3 pills. Either way, does it really cost that much for the ingredients, or am I paying for all of the research that went into it, & for all the research that went into pills that didn't work out.
Oh well. 1 more left, 1 more left.

I have posted a sticky note on my mirror,

1 more left!

Treatment # 10

Well, they pulled one of the chemicals from Nic's usual treatment. He won't have to have it ever again. Remember AVBD - you may have to scroll down to find that post- back in March or April. Now it is just AVD. He also didn't have to have the shot that helps out his blood cell count. Being that he took an extra week before treatment, his counts were fine. So this treatment has been a little better. Not so much chest pain. He did throw up during the treatment though.. bummer.

2 more treatments to go, never thought I'd see the day, but it's finally getting closer. Yahoo!

Treatment # 10- or not

So, some of you have heard that Nic is pretty sick.

He is not breathing well, has no energy, he is weak and achy. For him to go up or down the stairs takes more energy than he has. The blood work looks good- no infections. Chest X-ray doesn't show any negative spots. Still has a fever here and there. His oxygen level was 90, so not too good, but not bad enough to need an oxygen tank, or hospitalization. He isn't eating much, he has lost 4 lbs in 2 weeks. We were told to stop the antibiotics, they weren't treating anything. We are going to start him on prednisone- a pretty high dose to see if that will help out the breathing. If he is not showing any signs of getting better by Friday he will go in for a CAT scan to see if he has a blood clot. The other possible options are West Nile & Mono. Both of which just take time to get over.

For all those asking, what can I do to help, well my house is really messy & my walls need washing...

JUST KIDDING!

I am taking some time off work to tend to Nic, and I will be working on cleaning up when he doesn't need me.

He was too sick to have a treatment today.

He will go in for a treatment next week.

Cancer gets in one last kick

So Friday we went to the Uintah's, just as beautiful as I remember. We hiked in, &on Saturday morning, Nic felt a lack of energy & that something (some sort of sickness) was going to invade him. So we got home & he was in bed for the rest of the day. Feeling achy X 5. Sunday as I was getting ready for Cassidy's party I could tell he just wasn't right. It took more energy than he had, just to make it to her party. Last night I finally got a clue & took his temp. Yup, something did invade & was conquering. So this morning I took him to the Doctor & they ordered some tests & did an X-ray. We should hear back this afternoon. He has no appetite, he is still very achy, still feverish, and instead of breathing normally, it's more of a pant. He isn't breathing well. I will update once I hear back from the Doctor.

UPDATE:

We got a call from the Nurse at the cancer center. They can't find a reason for the symptoms. Lungs are clear, culture negative. She didn't say anything about the blood count. Just to stay on the antibiotic & go to his treatment as scheduled on Wednesday.

~ And a HAPPY BIRTHDAY TO CASSIDY!

Treatment # 9

Only 3 more to go!

So far better than last week. Hasn't thrown up, but tired and nauseous. For those of you awaiting the test results, scroll down a bit & you will find them.

Okay, Okay, I spoke too soon. No throw up, but a fever. If he still has it in the morning I will need to take him back in to the Doctor.

Test Results

Well, Doctor Stinnett called with Nic's test results.

Most of the lumps have gone down.

A few of them still look swollen.

However, the PET scan says

Nic is cancer free.

In time the ones that are still swollen will go down.

NO MORE CANCER!!!!

Unfortunately he still has 2 months of Chemo,

but at this point, who cares

LA LA LA LA LA WAHOO WOOT WOOT

* PRAISE GOD *

Thank you everyone for all your prayers and love and support. I don't know where we'd be with out you. We love you all. We are grateful to have such a wonderful support group of family and friends.

Look for a future post, once Nic is done with all chemo & the port is out, we'll be having a party to celebrate.

I love you Nic, I knew you could do it!

Pet Scan

Friday morning is the PET scan for Nic.
His appointment is for 9:30 am. Once there he will be injected with a radioactive dye. Then he will have to go lay in a room by himself for 1 -1/2 hours to let the dye move through his body. He then has a body scan that takes about 30-45 minutes. Once that is done, he is free to go. HOWEVER, he will be radioactive for 6 hours after he has the shot. So.... he can't hold the kids or let them sit on his lap or even next to him on the couch. The first time he had this done it was a little more difficult, being that it was in March. At least the weather is good enough for them to play outside, bummer that it will be so hot though, maybe they won't want to. We won't be getting the results until his appointment next Wednesday.

Treatment 8

TREATMENT 8

Only 2 more months to go-- Pending the PET scan results, which we will find out at his next treatment in 2 weeks.

This treatment, Nic was sick before he even got started. He took his nausea pills before we left for the doctor, but his body knows what is going on. After treatment we barely got out of the building before he had to vomit. Poor Nic.

Ashlee, I just had to tell you that when is ESPN magazine came in this week, I hid it until today, so he would have something to read. Last time he got it & read it twice cover to cover before his treatment, little stinker.

Changed my mind

Okay, so I changed my mind. These are the pictures, I don't think I will ever get used to the way he looks after treatment. Reminds me of Isabel during her treatment time. Just a pale look.

~Before~

~AFTER~

Yes, I know they are in different lighting, but the difference really is noticeable.

* T R E A T M E N T *

Since the last treatment didn't go so well, Nic's Doctor decided he needed to double up his nausea medication. So far so good. Just makes him more sleepy. We did make an appointment for his scans- that will be July 17th, & we will learn of the progress on his cancer.
I have been slow to get out my thanks to those of you who have helped. Please know that I appreciate all the meals & all the prayers.- And all the dishes- JUST KIDDING, I will be getting them back to you some day!

Cancer Sucks!!!!!

Another Treatment down. Only 2 more and we will have scans done again to check on the progress of these blasted chemicals. Then 4 more treatments & we should be done. I took a picture of Nic Before treatment started, & I took one of him on the way home. My point was to show you all that gray/green hollow look he has once he has finished treatment. It crushes me every time I pick him up from treatment. Such a drastic depressing change. I decided not to post them, because they were taken with my cell phone, so the pictures aren't all that great, and Nic asked me not to. He doesn't like they way it makes him look. I agree, I HATE the way he looks after.

Today's treatment was the worst thus far. When the nurse tried to get blood from his port, she didn't get any. She tried positioning him differently & a few other things. none. She thought maybe some blood had clotted, and gave him a *heparin soak.* she she gave him a shot of that in the port & let it sit for about 10 mins. & still nothing. So, she decided that the port must have been up against the wall of the vein, & took blood from his arm. So that prolonged the length of the treatment. He also had to take a nausea pill at the office. He has never had to do that before. Once the treatment was done, he got another heparin shot. So he now has to be extra careful & try not to bleed. He has been laying down all day. Cassidy & Trent both told me they don't feel good & have been down on the couch. So, we are over using the sanitizer in hopes that Nic doesn't get sick.

Cancer treatment # 5

Nic is doing well on his weight & tolerance of chemo. His red blood cells were a little low, but the shot will take care of that. He was feeling yucky last night, his complexion was a grayish green- as it is after every treatment.
I didn't get a chance to talk to him yet this morning, but I am sure there is quite a bit of sleeping going on.
I happened to get a call from my brother Aaron last night, so for those also curious as to his wife's condition, she is doing well. She has learned, just like Nic had to, that overdoing it, will only make you feel worse. They just moved into a new house, & 2 days later, she had brain surgery. After a few weeks of being down and taking it easy, she was trying to un-pack & do a little painting to make her house a home. She learned all too well that she need to let her body take it one day at a time. As Aaron asked me how I was doing, well, same as you I figure & told him so, we both seem to have a full plate. He gave me a little chuckle & said he no longer had a plate, he had a table. And that the table can get bigger at any time, there is always room for more. I thought about it, a wave a nausea came over me, as I was thinking, I just can't handle anymore. I don't want a table, I'd like to throw & shatter the plate I have (2 maybe 3 times, glue it back together, so I can run over it.). Thinking about that phone conversation later on, I thought about what was on my plate-- Was it all necessary to be there? Would I be happier if some things were taken off? My conclusion, I am happy with everything I have. Sure this cancer thing sucks & it is a struggle, but I have already learned so much & have a stronger relationship with my family. Not to mention a whole new meaning to humble, compassion, gratitude and love. This is a life experience that will give me wisdom in my older age, and the strength to get through what else life has in store. Now, when I say older age-- I am talking 32 maybe 34. JUST KIDDING. I will still be learning things at that age fa-sho (a shortened and much cooler way of saying for sure). I am sure he didn't know it, but thanks for calling Aaron, you gave me some positive insight on the current stage of my life. Your phone call was the answer to my and so many other prayers for some much needed strength and optimism.

Pricey

So, I am trying to keep up on the medical bills- I get a statement from the hospital about every day- Thank you Davis Hospital for adding to my stack. I get bills from the Dr's office & statements from my insurance that I have been trying to match up with co-pay receipts & such. I have been pulling my insurance statements on line, otherwise I get them monthly, & I don't want to wait until the end of the month. & go through them all at once. If you remember a few post's back-- well actually in April. I had to call the insurance about approving a shot for Nic to keep his white blood cell count up. So, as I was going through the paid & unpaid services on the insurance statement, I came across a transaction that took me a minute to match up.
I keep a record of what was done on what date in my planner, so that when I get bill with an amount & date of service, I am able to refer to my planner to see what the service was. I hadn't gotten a bill for this, but it showed what was billed to the insurance, then the contractual agreement amount that would be paid & what was left over. The amount that was left over isn't what surprised me- although I did a gasp/sigh Napoleon Dynamite style. It was the price of this one shot. More than one session of chemo. The shot was billed for just over $6,000.00. Yes, one shot, that takes about 30 seconds to give & causes my husband days of pain. I would like to ask the makers of this drug-- does it really need to cost that much? If they were injecting liquid gold into my husband I don't think they could charge this amount. Good thing for contractual agreements, and for insurance. They paid $2,334.00, the agreement is $2,788.00, which leaves Nic & I to pay $454.00 per shot. Totally worth it to keep him healthy, but good lord.
Come July, my insurance has a few changes, I am not sure if they will be for the better or worse, but I am sure I'll find out.

Thursday

Nic is feeling icky. He woke up, made a few calls, ate, took pills, & went back to bed, then woke back up had lunch & more pills & back down. Then he will get up and lay around, because he is tired of sleeping. This has become a ritual for the day after chemo.
How am I feeling, you ask? 95% better than yesterday. I have been drinking water, and I ate good food. I slept well last night. Am I stressing?-- As much as can be expected. I am going through the medical bills & matching up receipts, statements and bills. I sure love my insurance.
For the weeks to come-Starting next week, I will have Cassidy's pitching machine on Tue & Thurs & Trents baseball on Wed & Fri. That sure makes for a full week, for many weeks to come!

Treatment # 4

Treatment # 4- Completed

Only 8 more to go!

So far so good, however, I am sure come tomorrow morning, it will be a different story.

It's a good thing too, that Nic is doing well. I seemed to have developed what I would say is one of the top 5 migraines I've ever had. I get them here & there, & my pills usually take care of them. I rarely get to the point where I am sick to my stomach & vomit. Well, my friends, today was that day. A sick to my stomach migraine. I took a double dose of my medicine. It took the edge off enough that I could still function- as I vomited. Then the time came for me to take more. I took a different kind, I haven't thrown up since, and my migraine has gone down to a headache. I will certainly be taking a sleep aid tonight, so I can wake up refreshed tomorrow.

What caused my migraine-- Well when I concentrate or get ency, I grit my teeth, too much of that is not a good thing. If I don't drink enough water, that is a contributor, if I don't eat right (too much MSG or don't eat when I need to) another contributor. When I stress (which is every other Wednesday and then some). I happened to do all of the above today. It makes for a great reminder that I need to take my water bottle to work, & make time for breakfast and lunch, try to relax a little, and calm down. Sounds easy right?????

Treatment # 3

Nic had his 3rd treatment today. He is feeling pretty crappy right now. Once again, I was able to watch the color drain from his face. He goes in healthy & feeling alright, comes out looking a little pale and grayish, feeling icky. Oh well, 6 months of hell for a healthy long life after, right- I'll take it!
I asked Dr. Stinnett about Nic's counts. They were low this week, as was expected, but nothing like last treatment. He said his counts were @ 8000 this week (for white blood cell), & last treatment they were at 2000, the other count-- red blood cell?? not sure what the other count is, but it was at 200 last treatment and 800 today. Sooooo that helped me to see just how low they were last time. I guess healthy/normal is around 15,000, which we won't be seeing in Nic until a few months after treatments have been completed. We were told he will feel worse after each treatment & so far I agree, each treatment it has taken him longer to feel better. He also got the shot again, the one that makes him feel like ---well, whats worse than crap??, I guess we'll stick with crap x 2??
He did gain another 2 lbs-- he is almost up to his pre-cancer weight. Keep the good food coming!!

Another one bites the dust

Well, Nic gained another 3 pounds this last week HURRAY!!!! He is almost back up to where he should be. Today was his second treatment- or what Dr. Stinnett would call treatment 1B. I say- 2 down 10 to go.

His white blood cell count was VERY low today, so he should have gotten a shot called Neulasta. Unfortunately, between me & the doctors office, we couldn't get my insurance to approve it today, so he should get it tomorrow or worst case scenario, Friday. No sick people at my house until he has had that shot.

I am going to try and remember to take a picture of the before and after his treatment. When I left the Dr.'s office this morning he looked alive. When I went to pick him up, he looked a shade of greenish white. No hiding it. He wasn't feeling well. I took him to get lunch & then went home. He took a nap. The energy was drained out of him.

Why did I post his picture you ask? Well..... This is who I think Dr. Stinnett looks like. I want very badly to call him Ferris. As he looks like a young Matthew Broderick. Nic would disagree, as he always does... Ü

Friday

Thank you Lanse & Kim for dinner on Thursday& Crystal & DeLaine for helping out with the kids.

MUCH APPRECIATED!!!

Keep the positive thoughts coming!

Nic lost 5 lbs this last week. From Wednesday to Wednesday- He's only got me by about 10 lbs now-- Guess I better get on it to lose a few ehhh..

Grandma "B", thanks for the chicken noodle soup, we both just finished a large bowl of it. Yummy!~

Nic has been feeling weak and tired. He has been down most of the day, which is really weird for me to see, usually when he is sick & has laid around most of the day, he goes stir crazy and needs to get out, even if he is feeling crappy. Well he now has a new definition of crappy, which makes the old crappy seem desirous.

Ashlee, thanks for the ESPN subscription, he looks forward to the first issue!