Not the news I was hoping to hear......

So apparently the hair loss has only happened in patients with red hair, and my thyroid is completely normal. I asked my self "Why should I be suprised...if it only happens to a couple people...then it will happen to me."

I had a CT and an MRI scan done on December 21st and met with the nurse today. Good news and not so good news.

Good News: I have no new tumors, some of them have decreased in size
Not so good news: The tumors in my armpit and abdomen are growing. From the date of the first scans my tumors have grown overall 30%...which in "cancer" terms means that your cancer is not stable.

They recommended that I start "IPI"  http://www.yervoy.com/patient/about-yervoy.aspx  treatments in January- IPI is an IV therapy that I will do once a week for 4 weeks (I think...still kind of in shock). I will not have to stay in the hospital, and they say I will be able to work at the same time (uhh-huh, we will see about that) It is still an immunotherapy drug, so not Chemo-but it will affect my immune system in a different way.

They also suggested some radiation therapy for the tumor under my arm because it is getting annoying for me, and sometimes the radiation helps the other tumors react better to the IPI.

So on to the next battle.......

Graduation Day

You are now leaving the Twilight Zone.......

I finished the last treatment of IL2 on December 7th! I feel pretty good, with the exception of the new side effect that I had of joint pain, I feel like I have arthritis in every joint of my body, so ibuprophen has become my new friend.

As usual I do not remember much of the week, but I know that they did something different. Rather than giving me an pre-dose of pain meds, they waited until I "rigored" before they gave me anything. Which might have something to do with the joint pain.

Apparently we watched Rudolph the Red Nosed Reindeer, and I was talking to my Grandpa and asking him for Werthers because my mouth was dry. (He has been gone for almost 6yrs)

I am scheduled to go in for a CT and MRI scan on Dec 21st and I am keeping my fingers and toes crossed that everything is good.

I started loosing my hair about 2 weeks ago, which should not be happening, so I am trying to figure out what is going on-might be thyroid issues etc. I know everyone says that "hair should not define you", but they have never lost hair. It would be easier if it was something that I had planned for, but this typically does not happen with the kind of treatments that I received. So hopefully I will find out more next week.

I am so grateful for the staff at HCI, it was a bitter sweet day when I left on Friday. They made me feel like a real person and made the bumps in my journey a little less painful. They knew me, they knew my quirks- what "home remedies" I brought with me. How much I hated to wear the hospital gown. They laughed at me when I told them I could taste the saline when they would "flush" after the injections, and how I felt the benadryl in my chest after it was injected. They noticed my pedicures and even gave me decorations to decorate my "IV tree".

I may not be a University of Utah fan......but I am a fan of YOU! XOXO

This image was on the board when I arrived on Monday, and yes RC was one of my favorites!

Better safe than sorry.....

I showed up today, bright and early at the Huntsman Cancer Institute, only to be sent home :(. I woke up this morning with an eye infection and they didn't want to take the risk of the infection getting worse, so now I have to push it back a week.

It is a good thing that I don't have a white towel, because I think I would have thrown it in today. :( I know that everything happens for a reason, and maybe it is because Heavenly Father knew that I was not emotionally ready for this week. Or my service was needed some where else.

"Just keep swimming, just keep swimming"

There is no place like home.....

Holy Crap.....I finally made it home from the Huntsman Cancer Institute.
My stays in the hospital generally last from Monday morning to Friday afternoon, but this week the nurses decided to "mix it up a bit" so I ended up staying there until Saturday until about 4pm. I felt like Dorothy, crazy dreams and crazy weather- but no matter how hard I clicked my heels together, I could not get home.

They normally give me demorol when I rigor, but this time they decided to give me dilaudid instead. I also started the week off with a head cold so I am sure that didn't help either. I came unprepared this week, I usually take extra clothes that I come home with so this week I figured I would pack lightly.... HA HA HA. When I saw myself in the mirror I thought "Oh my heck, I hope no one RED-NECK-ED-IZED me! Really I wore a wife beater with a black bra....ughh!

The nice thing about having dilaudid was that I was more awake this week, so I rememeber more of the visitors, and more of the nurses. But I also remember the birthdays that I missed and more of the rigors that happened and the "change" that didn't happen, and how much I missed my kids ( I always miss them.....I just don't let it affect me as much)!

So while I was in the hospital I caught an intestinal infection, which meant that I had to be watched more closely and my status was moved to ICU instead of IMU (In my situation, it just meant how much attention and care I got). My blood pressure kept dropping so I had to stay until it became more steady. So everytime a nurse, Dr or visitor came in the room, they had to put on a plastic "robe" and gloves.

So I came home with an extra 18lbs, crazy hair that took over an hour to comb through, ANOTHER prescription, and more itchy dry skin because of the blood pressure cuff :(

After 4 days, I finally feel a little more like a normal person. Only one more week of this IL2 treatment. WOO-HOO!

Everyone have a great Thanksgiving, and don't forget to TELL people in your life how greatful you are for them. You may think they know...but they need to hear it.

Thank you for all of the visitors, family, friends and Doctors and Nurses that have made this journey a little less bumpy.

Last Round

          After chugging the barium I had to drink, and tasting the saline and feeling the contrast I survived the CT and MRI scans.

     Dr Grossman was pleased with the results of the scans, I do not have any new tumors , and the ones I do have are not changing alot. Some of them are changing by millimeters, but he said it might be because they are being attacked or simply because I have a cold, and my lymphnodes are doing what they should be doing (fighting the cold).

    I am scheduled to go back to the HCI on Monday November 5th (yes I already sent in my VOTING BALLOT). My goal this time is to stay the entire week, and get the most doses I can.

     I am not saying that I am excited to go back, but my head and heart are in it this time better than I was last time. Trying to put the stresses of my life (job etc) away and focus on fighting this!

I am grateful that I get to celebrate ANOTHER birthday this weekend. I feel truly blessed.
Thank you for all your well wishes, and prayers!

LUV YA!


 

Round Two.....ding ding

Hey everyone, I apologize for not writing more but the last couple weeks and treatments have kicked my BUTT!

I went to HCI (Huntsman Cancer Institute) for round 2..treatment A on Sept 17th. I was there until Friday pretty much of the same except the side effect that I brought home with me was the itchy, peeling skin.....ARGHHH. I am going to scratch myself crazy. I have tried every fancy lotion they gave me at the hospital, every home remedy and nothing helps.  The week following the treatment nothing tasted good, sounded good or looked good. If my kids were not counting on me driving them to school, I probably would have stayed in bed all day.  That week on top of the itchy skin, the nausea came too. The crappy thing about this is, just when I start to feel good....I have to go back in.

All of my family members say that if you want a cheap comical experience, you should come see me at the hospital. The only days that I really remember are Mondays. The rest of the days are all a blur. P.S.....don't let your sister-in-law (no matter how much you love her) let her talk you into buying ebooks on your tablet. TRUST ME, your checking account will thank you later. LOL!

Round 2B was set for Sept 30. When I checked in and talked to Joan (the head honcho) at HCI she was ECSTATIC about the side effects that I had been experiencing. To her that showed that the treatment was working, and that in Melanoma patients itchy skin is a good thing. She also noticed a couple "halo's" (told you I was an angel ;) which means that around some of the moles on my arms and my back there are "rings" meaning that the IL2 is affecting them also. I have also started to loose the freckles on my face.

IDIOT TEST
Every morning the nurse gives me what we lovingly call "the idiot test" which basically lets them know how and if your brain is functioning. There are simple questions like: what is the date today, what I am I holding in my hand, repeat the phrase "no if ands or buts". Then they get harder: How many nickles in $1.25, what is the total of 93 and 17 etc. Then they give you a connect the dots sheet...only the dots don't "create" anything. They next page is you connect the dots to the numerical and alphabetical 1-A, 2-B etc.
Most days I fly through the test....but this week, I failed it three times on Wednesday. At that point they decided not to give me any more doses because they were afraid that I would/could go into a comma. So this week I only got 3 doses instead of the average 7.

Good thing this week....I figured out a way to keep my "blood pressure cuff" arm from crusting over....I cut a sock off and put it underneath, so much better this week. Now if I can just figure out a way to stop the pain from the dilator when they insert the PICC line, I could be rich.

I love the nurses at HCI, they are so nice and make the experience not so dreadful. Some talk to me about being a red-neck and wanting to own a pig, and treat me like I am high maintenance every time I push the call button  LOL! Others are just nice Eye-candy (married) Autumn-laughs at me every time she injects the benadryl because she thinks it is funny that I can taste it and it makes me cough. Chad because he knows that his sister told me I could beat him up if he was not nice to me. Everyone knows my name, and they are always glad I came.....wait isn't that a theme song to a TV show?
Seriously that is how I feel.

I don't always remember who came to sit with me or who came to see me, but I really appreciate everyone who has taken time out of their day, or taken the day off of work to help me or my family and hopefully in the process you get a little comic relief!

I go back in for scans October 26th, and if everything is doing what it should round 3 starts November 5th. So until then....everyone get a little R&R.

Love ya!

On the next episode...

I saw my Oncologist today and after he went over my CT scan and MRI results with a fine tooth comb he told me that my MRI was great, and that I had a brain :) but there were not any tumors there.

My other tumors showed a little growth (in millimeters) with a growth rate of 9%, but in cancer patients as long as the growth is under 20% then you are considered a "stable" cancer patient. But it might just mean that the IL2 is working and the tumors are inflamed because they are being "attacked". (which has been my feeling all along..wink wink)

Dr. Grossman was excited about the way the treatment is going and said that I was a perfect candidate for the next round. Round 2. I was sooo confused when he said Round 2...I was like, what are you talking about....I thought after this 3rd admittance I was done. HA HA  NOT!  This treatment next week will be the beginning of round 2a, then I will have 2b a week after- then run more tests and if all is still going well..Round 3a and Round 3b. Which goes thru the end of November........DEEP SIGH.

Everyone else seemed to understand that from the beginning but me...oh well, it is what it is.

Apparently that is not the only thing that I do not remember. While I was waiting for the Dr to come in I read my Mom's notes that she had taken while I was in the hospital. I have to say...I do not remember 3/4 of the things that happened. Here are a couple that made me laugh.

• Nurse: Let me turn the lights down so that it will be easy on your eyes
• Amy: Yeah...easy on the eyes like Channing Tatum.

I gave a nurse advice on how to potty train her son (using stars)...(she came back and told me that it was working.)

I told my friend how hot the nurse "Josh" was...thank goodness that he was not the one in the room at the time.

Watching the movie...Crazy, Stupid, Love

Getting mad at my daughter because she didn't grab a jacket. (she was not there)

Getting mad at my "wus-band" for not helping our little boy with an extension cord. (they were not there with me either)

Ordering  a tuna-salad and asparagus..I actually remember ordering the asparagus, but not eating it.

Eating chocolate Ice-cream.

Stay tuned for the next episode....GOTTA LOVE DEMEROL!

Bottoms up

Today was the day that I went in for the follow up CT scan and MRI, can I just say that Barium is so gross! I got the dry heaves after drinking the first bottle (16oz), but I told myself to suck it up and then pretended that I was drinking a Jamba Juice....I fnished the second bottle...Woo-hoo!

The contrast that I get gives a warm sensation, and makes me feel like I pee'd my pants (no...I didn't) and continues through my entire body. I swear everytime that I get the contrast it gets hotter. It is hotter than the heated blankets they give you.

The thing that some people may not realize about the Huntsman Cancer Institute is that everyone you see there is affected by cancer. They may be there for treatment, to visit a loved one who is going through treatment, for follow-up on treatment.  There is no question. Other hospitals you can be there to see a newborn baby, outpatient surgery etc.

When I was waiting in the lobby to get my blood work done, a sweet bald lady said to me "What do you have?" After talking, we discovered that we both have Melanoma. She is going through IL2 treatments also....she lost her hair after the first week of treatments. Her husband explained that while she was in the hospital she was doing great, but then she got home and went downnhill...she was so sick. She looked as if she had lost 40lbs...she couldn't believe that I hadn't lost any weight, or lost any hair. It turns out that we were doing treatments at the same time.

The Dr. told me that each person is different, and that was proven to me today. I feel very fortunate that my treatments have gone the way they have gone.

I should know the results tomorrow after meeting with Dr. Grossman.....I am staying positive that treatments are doing what they are expected to do.

I'll keep you posted :)

Blah..........

So this week has not been as "fabulous" as the first week after the IL2 treatments.

The first time I went back to work and felt great...not so much this time.

I had to go back to the hospital on Monday because I could not get a full breath, after 4 hours they diagnosed me with a bacterial infection in my abdomen, and were concerned that my my oxygen levels were not ideal so they sent me home with oxygen and prescriptions and told me to come back on Friday.

When they said that I was going home with oxygen I didn't realize what was involved. They brought a machine and 50ft of green oxygen hose. (I feel like I need to get 50 cats to go with this machine). I can't stand the smell of the oxygen tubing, but the alternative is not an option.

My kids always make sure that I have the oxygen in my nose and will sometime "pinch" the hose just to make sure that I am not lying.

I have lost about 10lbs, but still don't feel like myself. They were right...every treatment will be different. Lets hope the next one goes better.

Everyone have a "more-fine" night.


Thank you to all my neighbors and friends for the meals and the "check-ins" Luv-ya

Where am I?

It has been a while since I have written, so I figured it was time to update everyone.

I just finished the 2nd week of IL2...my body was able to take all 7 treatments, my mind however I am not sure of.
The one thing that was different this time than it was in the past was that I got "rigors" about two hours after the IV my body would get the chills and I would shake uncontrolably. The nurses were usually able give me demoral before I could feel them too much......but there was  a really bad one that I wish I could forget. Thank goodness for my Mom who was there to hold me through it.

I gained 30 lbs in 6 days from all the liquid that they pumped into me to keep me hydrated etc. but that also meant that I got liquid in my lungs and my blood pressure and oxygen levels dropped. They wanted me to take Oxygen home...but being the stubborn red-head that I am, I refused

During a "hot flash" I remember asking the nurse to get all my clothing off the top half of my body....I apologized for being a "diva"....but needless to say, I was having a melt-down. She was very accomodating and helped remove a couple layers, it was quite the task with the PICC lines, blood pressure cuff etc.
  
I always rememeber people saying that they were so thankful for prayers that were being said for them, and I thought " DUH....why wouldn't you."  But when you are the one at the receiving end of those prayers....your perspective completlely changes.

I could not have survived this last week without the prayers, thoughts, fasting and support from the many family and friends. I had a lot of visitors at the hospital, that I do not rememeber physically, but please know your presence was appreciated.

My goal right now is to get rid of this weight, get my kids ready for school (FINALLY) and get back to my normal self.

My next appt is Sept 11 (ughh, I know) and hopefully Dr. Grossman will have news that my treatments are working.
And then I will have one more round of treatment Sept 17th.

Thank you for the meals, thoughts and prayers...they are truly truly appreciated.

XOXO

Round 1b

Good morning everyone. That was a long night. I had two doses of the interlueken and started to get some of the side effects that they mentioned. I got the flu like symptoms with the body aches and also got 'rigors' which is when your body gets the chills and you shake uncontrollably. But with help of some cute nurses and some Demerol.....everything worked out. Bring on day two

Blood Work

I had a follow up appointment with my Dr today and he was very happy with the results of my blood work because they came back and the levels (billirubins) are back in the "normal" range. ( I compared the results to the 1st blood work from July 18 and some of them were even better now!)

Which means that my liver has handled the treatment very well.

I am going to be admitted to the hospital on Monday the 13th, and Dr Grossman is planning on giving me the IV treatment every 12 hours, or could push it to every 24 hours if needs be. He said that he would be happy to get 7 IV's of the IL-2 in my system before the toxicity levels of my liver and kidneys max out.

Another good thing is that I may not be Dr "Doom and Gloom's" patient next week.  I understand that she just wanted to make sure that I was aware of all the side effects and possible outcomes...but seriously-do you think that I am here for a week at the SPA?

Update

After speaking with family members this weekend, I found that I do not remember Tuesday July 31st 2012 (LOL). There were things that happened in the hospital that I do not recall happening, I apparently received a "bath" but do not remember ANYTHING. I also do not remember eating lunch or dinner that day either.

I remember being out of it and asking my brother if he had purchased trees from wal-mart, but then caught myself so that I didn't sound stupid. I remember being frustrated because I thought everyone was asking me the same questions OVER AND OVER again. Which really did happen every morning so that the nurses could check my neuro function...I did struggle on the question "How many nickels are in $1.25"  Ha..Ha..Ha.  So once I figured out that it was 25...I vowed to memorize the number so that I would never forget it.

So far the only side effects that I have had is itchy/dry skin (which if you know me you know that dry skin drives me CRAZY!) Thrush, which means that I can't share food or drinks with my kiddos. And 11 extra lbs from the fluid (but lost all but 2)

I am back at work today, so I guess that means that I really am SICK.

Thanks to everyone who came to "Amy-sit" at the hospital, even if I don't remember seeing you.

Round 1a

Can I tell you how much I hate the taste of saline?  I was suppose to stay in the hospital until this Friday, but get to go home today! Most patients max out on their treatment s after 15 treatments. I maxed out at 3.  All the Dr.'s say that they have  never sèen this happen so quickly.  I know it is because of all the fasting and prayers that were done/sent on behalf of me. I realize that this is only the first week in a three week treatment. But God is real and miracles can happen-

All Systems are go!

Finished the last test....had a nice radioactive induced sleep. Yes I am fortunate to be able to sleep throught CT,  PET Scans and MRI's :)

All my other tests came back ok...which means that my heart, lungs, kidneys and liver can handle the treatment.

Monday I will check in to my own private room at the HCI...eat your heart our Beyonce`! (and this "baby" is really mine...LOL!)

Treatment

     My team of Doctors have decided that the best therapy or option "A" for my diagnosis is called Interleukin-2 or IL-2 . (DO NOT GOOGLE THIS...It will scare the living daylights out of you).

 If all of the preliminary tests that I am taking come back okay then I will start treatment at the Hunstman Cancer Institute on July 30.

     IL-2 is different than a chemotherapy drug -- it is actually a natural part of your body's immune system. IL-2 is given by a 15-minute IV infusion every 8 hours for 5 days. Each treatment course consists of two 5-day treatment cycles separated by a 9-day rest period, and multiple courses are the norm. You will typically be imaged (CT Scans and PET Scans) about a month after finishing your first treatment. If you are responding, you'll likely be offered a second course of treatment for 6 to 12 weeks after finishing the first course.

 It should be given in a hospital under the supervision of a qualified physician experienced in the use of anticancer agents. An intensive care facility and specialists skilled in cardiopulmonary or intensive care medicine must be available.
   
Many of the side effects are due to "capillary leak," which begins immediately after treatment is started. Capillary leak results in the leakage of proteins out of blood that then causes a decrease in blood pressure. The most common side effects are as follows:

• nausea, vomiting, diarrhea, loss of appetite
• weakness and fatigue
• flu-like symptoms (fever, chills, headache and muscle aches)
• low blood pressure
• general pain, chest pain (angina)
• breathing problems due to fluid in the lungs
• weight gain, fluid retention
• mental effects (paranoia, hallucinations, insomnia)
• itching, peeling skin
• anemia (low red blood cell count)
• low platelet count (increasing the risk of bleeding)
• low white blood cell count
• kidney damage
• mouth sores

I know that my prayers were answered. I prayed that I would not have to have Chemo and I didn't want to loose my hair ( in know..it is vain)
My Heavenly Father knows who I am and knows the struggles that I am going through. I have felt at peace and I truly have felt the prayers and happy thoughts that have been said on my behalf.
I have a fantastic family that has truly been my life support, and I live in a great ward with awesome friends, who have offered TONS of help and support.

I am holding strong to the promises that were made to me in my patriachal blessing when I was 16 years old, I know this is going to be tough for everyone, but I am not a quitter! I am fighter. What doesn't kill you makes you stronger.

Doctrine and Covenants 82:10

 I, the Lord, am bound when ye do what I say; but when ye do not what I say, ye have no promise.

The Results are in!

After two months of waiting my pathology report FINALLY came back from the MD Anderson Cancer Center.
The official diagnosis.....Metastatic Melanoma?!? I know- I thought the same thing...how can you have melanoma caused by the sun INSIDE your body without anything on the outside layer of your skin.  I have come to the conclusion it is because I have sunshine in my soul.

I decided to start this blog so that my family, friends and neighbors can get current and correct information all from the same place.

I did not start this blog to cause "doom and gloom" or wide spread panic, or to try to convert anyone to my religious beliefs. I deal with trials with laughter and tears..so you will probably get a little bit of everything on this site.

I love you all!