Are we there yet?

Hi Everyone,
    So now you all know why I don't have a "family" blog-I apologize for not updating this blog more often, things have been a little crazy the last little while.

     I finished radiation therapy on February 11th and feel good, the only side effects that I got from radiation was being really tired, and the rough/itchy skin where the treatments actually happened.
     The tumor in my armpit (I know it sounds sexy!) changes everyday it seems...sometimes I think it gets smaller, and other days it feels bigger. I occasionally get a little twinge of pain- but in my mind I am saying "die, die, die!"   I have one more treatment of IPI scheduled for March 12th and then I have to wait a couple weeks for CT scans and MRI to see if the treatment is doing anything.

     The worst part of IPI has been the IV's. I think my veins have anxiety. Everytime I think about the process, it makes my veins shrink and hide. When I get to HCI I have to go to the lab for blood work and to get the IV inserted. If you were to walk in and see me sitting there holding hands with purple surgical gloves, filled with hot water and my arms wrapped in warm towels...you would probably wonder what kind of weird dating show you had just  walked in on. :)  But we found that this is the best way to get my veins to relax and avoid being poked 8 times. The whole process takes about 30-45 minutes, then it is off to see the Dr to make sure my levels are good enough to handle the IPI treament.

The only side effect from IPI has been the rash, but it doesn't itch and compared to the itchy skin I had with IL2..this is NOTHING.

My hair is growing back...slowly, but it is starting to grey. But I know I shouldn't complain because it could be so different.

Thank you to all my friends, family and neighbors for treating me like I am normal, and that I am not a piece of China- that will break if you say the word Cancer. I can't lie, there are days that I have my own little pitty-party, but then I pick myself up and deal with it. I refuse to give in to the sadness and the "what-if's"-because they will consume you if you let them-and sadness is not good for the immune system.
                         JUST KEEP SWIMMING....JUST KEEP SWIMMING!
                                                       XOXO

Just keep swimming...

Wow...time flies.

I realized today that I haven't updated this post FOREVER, so I thought I would keep you all updated.

I started radiation this week,(2 treatments) and it takes longer to change clothes and get set up for the treatment than the treatment itself takes. LOL I also had my second dose of "IPI". The only side effects that I have noticed is that my hair is turning gray-we are talking SKUNK STRIPE PEOPLE! and I have been a little more tired and awnry than usual.

When I spoke to Dr Grossman about my hair...he was excited. I was like "REALLY? Easy for you to say!" He explained that it was a good thing because your skin and your hair are "kinda the same thing" that it meant that something was working. Needless to say that is something that I couldn't deal with...so I washed the gray right outta my hair! I guess I should feel lucky that I was able to make it 38yrs without having to deal with the "Gardner Gene".

This last IPI treatment went well...it only took one time to find a vein, so hopefully it will continue to go smoothly.

Still taking Biotin to help with the hair re-growth. It seems to be helping the amount of hair that I am losing. This side effect is probably the hardest to go through. I know it is "just hair", and it will grow back-but it is still emotional for me. Going thick to thin, long to short, and curly to straight, natural red head to not so natural red-head all in a matter of weeks was tough. But this too shall pass.

 Wherefore, be of good ^acheer, and do not ^bfear, for I the Lord am with you, and will stand by you ....D&C 68:6

Thank you to everyone for your kind words of encouragement and comments.
"Just keep swimming...Just keep swimming"

Be Aggressive...........

When I met with Dr Anker to discuss the option of having radiation therapy on one of the tumors, I heard the cheeleading cheer come in my head "Be Aggressive...Be Be..Aggresive. :) I have decided to fight this crap head on and attack it while I am still healthy.
I started the "IPI" (ipilimumab) treatment today. It took 2 nurses, and a PICC line team 8 times to finally get the IV started. I WAS a pin cushion today.

Once the IV was in the infusion was given to me for 90 minutes, and then they observed me for an hour to make sure that I would not have any side effects.

IPI is supposed to help shrink the cancer tumors and with the combination of radiation therapy it can even show NED (no evidence of disease) or remission, It is not chemotherapy, but more of a immunotherapy drug, to try to get my immune system to fight the cancer.

The schedule is radiation 5 times over a 2 1/2 week period. And 1 IPI treatment 1 a week every three weeks over a 12 week period (so four doses).

Dr Grossman told me that based on the side effects that I had with IL2....this will be a kitten.

I spoke to a new therapist "Gabby" today and she was AWESOME. I wish she could come talk to my Relief Society Sisters. She talked all about how feelings come from thoughts and if you feel sad, angry etc you need to re-think your thoughts and get distracted. She said that she has a sculpture of hands making a bowl shape...and she reffered to them as God's Hands. And when she has things on her mind that she knows she can't control, she writes them on a small piece of paper and "puts them in God's Hands"  Instead of asking "Why Me?" she asks "Why Not Me?"  "It would be okay for my neighbor or sister to have cancer, but not me?"
She is also a cancer survivor and said that "you can't control the cancer, but you can decide if you are going to fight it. When you are faced with a decision in life you usually always have to choose between two things you want or two things you don't want. Your choices might be do I want cancer or do I want Chemo." NEITHER....but those are your options.

She talked about that "all this is temporary and only God knows the big picture" and that we just need to focus on the quality of life and not the quantity of life. Because everyone can die in 10 months.

She helped me a ton to get through today.

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.