Chemo Week 1

As you may or may not know, we decided to have me start chemotherapy. We were trying to avoid it. We were trying to find another way that would give us the same results.

The thing that we were doing before chemo was a type of light therapy that Jess talked about. Photo Dynamic Therapy or PDT. It is very similar in concept to radiation, but has way less side effects. I was first injected with a medicine and then would wait 2 hours. This medicine, because of the way that it is administered, is attracted to the cancer cells in my body. After the long 2 hour wait I would lay in an infrared bed. Looks just like a tanning bed, but the lights reacted with the medicine and would destroy the cancer cells! This was very exciting to us as w thought we had found the answer to avoiding the toxicity of chemotherapy.

infrared light bed

I'm inside!

Well turns out it was working great, except that I was allergic to the medicine. Big, huge bummer. Cell die off was definitely happening, but because of my allergy and the location of the cancer, the swelling was too much for me too take. This us when I was in debilitating pain. Kerry (my best friend) and Jess (my husband) blogged about this time period.

The burning, the stabbing...the never knowing when I could get relief was beyond words for me. Still is hard to put myself back into that place. Almost feels like it happened to someone else...or like it was a terribly bad dream. A memory, fuzzy around the edges. I'm sure I subconsciously do that to protect myself from remembering every awful detail.

So needless to say, we stopped PDT...and what were we left with? Yep...chemo. Dang. The good news is that we know that it got rid of the mass last time. So we are pretty confident it will work. Bad news is that we know how hard it is and how crappy (excuse my french...lol) the side effects are.

Alright. We swallow the hard pill and start chemo two Mondays ago. It sucked, but we knew that. By Wednesday night things took a turn for the worse.

Let me back up a bit. I say that I'm going through chemotherapy because I am. But it may be different than you are used to. IPT chemo is an innovative way to administer the drugs and minimize the detrimental side effects. Still super hard for me to go through apparently. Judging by my first week.

chemo drugs

Wednesday night nausea hit me and hit me hard. On the way to treatment on Thursday (Tues and Thurs I do treatments to help my immune system be stronger) I had a very hard time. No polite way to say it, but I threw up the whole way there. With nausea like that no appointment is going to go well! But they have magic medicine there and I got through it.

not doing so great

Making it through Thursday was a feat, but then came Friday morning. A morning I will remember forever. Both for terrible and beautiful reasons.


...to be continued...

What Keeps Me Going

This post doesn't really need an explanation with a picture like that! Looking at this beautiful photo of my daughter and her BFF is really all I need to "be strong". My little brown haired beauty so full of life and love.  She is my inspiration!

Why Valerie?

Hi, my name is Jess. I am Valerie's husband and I wanted to contribute to the blog to give you a glimpse of my feelings and experiences though all this.

Why me? Why is this happening to me? Its not until later in life that I learned that a trial, or an afflicion was something that can benefit the one being afflicted. I never understood this as a kid, or as a teenager, or even as an adult. I always avoided discomfort and I never knew that I can actually learn from a trial. My parents did a good job of sheltering me from "crap". To this day, I can't think of anything that happened to me as a child that can be called a trial. It wasn't until well into my 20s that I learned to deal with trials, adversity and struggles. Even now, in moments of weakness, I revert back to the my old, numb, way of thinking. The author Andy Andrews taught me to think "Why not me? What great things can I learn from this trial?".

When Valerie was first diagnosed with cancer last July I was pretty devastated and only after a week or two of dealing and knowing that she would be ok, was I able to think about what we can learn. So I organized a group of people and we were able to raise enough money to pay for all of her treatment. Envita Medical Center and their doctors and nurses had Valerie in "remission" in a matter of  weeks. It was very difficult on her and her body. She suffered hair loss, constant nausea, terrible mouth sores, and a host of other side-effects. But she did it and took the side-effects like a champ. I was so proud of her and she did learn great things from it.

The lesson that stands out the most for me was that she would be able and better equipped to help something going through the same thing in the future. She can now relate to a whole new sector of the population. I also learned that people will come out of the woodwork and bend over backwards to help you. I'm ashamed to admit this, but I always felt that people were generally selfish. Okay, I just gave you a glimpse of one of my biggest self-struggles. But yes, I generally felt that people were usually out for themselves. Boy was I wrong! Shannon, Kerry, Amanda, Lance, Glenn, Lucy, Shanda and many others, bent waaaay over backwards and gave their time, talents, resources, and cash to help us. So when we learned this last July that Valerie had a recurrence, I was equally devastated. But I did know two things. I knew that she was going to be ok after more treatment, and I knew that we were going to learn more great lessons. Absolutely nothing could prepare me for what was about to take place.

About a month and a half ago Valerie started to feel strange sensations in her right arm. The sensations quickly turned into severe pain and discomfort. So we went to a local doctor here in San Tan Valley and she ordered an MRI that was told us what was going on. We found out that the cancerous mass of lymph nodes had grown and spread into her chest and upper back on her right side. They were displacing her trachea and one mass was encasing an artery. That scared me more than the first time because of the compromised blood flow. But just as disturbing, a mass was pressing on her spinal cord and this was the cause of all the pain and craziness that was going on in her right arm. After we learned the scale of the cancer, the pain got worse. It became EXCRUCIATING. She was being tortured. Imagine that your arm is being held over an open flame and that you cannot move it. Imagine the torturous and excruciating pain that you would experience.

The doctor prescribed the maximum dose of a nerve medication. She still had the pain. He gave her a very strong oral pain killer. She still had pain. And finally we gave in and they gave us a pain patch, a pain patch that we were trying to avoid. This "pain medication" is an isotope away from being considered heroin. It is 100 times stronger than morphine. She still had pain! For about 3 weeks life was constant, 24 hour pain for Valerie and the nights were literally hell on earth for her. She would cry out in pain constantly. She would roll around the floor begging and pleading that her pain would subside. There were times when she felt that she could not go on any longer. I was devastated because I could not help her. There was absolutely nothing that I could do. Nothing that I tried gave her even a little bit of relief. This is when I lost it . I remember during one of those sleepless night thinking why? "Why her? Why, why, why? I don't want to learn anything! I don't care about learning anything! Screw the lesson! Valerie doesn't want to learn anything! This is not worth it! She, of all people, doesn't deserve this! Why are you doing this to my family?"

There is good news. The photo dynamic therapy that Envita does is pretty amazing medical technology that I wish more was more prevalent. It is designed to kill a cancer cell immediately, during the therapy. The only real detrimental side-effect is that it causes inflammation. There is so much cell death going on on that part of her body that she swelled up like a balloon and the tissue around the mass that was pressing on her spinal cord probably swelled up too. This made her pain worse and unbearable. But because of the extremely sensitive location of the cancer mass, the pain, and the swelling involved we decided to stop this therapy and start the low-dose chemotherapy that was effective in helping Val achieve "remission" last year.

Since stopping the photo dynamic treatment Valerie has now had some well deserved relief. Monday night was her first full night of sleep in about a month and we were beside ourselves excited. Hooray! As of today, she still has pain and her hand is still "dead" but we see the light at the end of the tunnel. I don't know if I will soon understand what we were supposed to learn from this latest trial. But it was BIG one and I know there are many things we'll learn from it.

One thing that I do know, Valerie has a very selfless way of connecting with people. It is a great talent that I wish I had. She touches the lives of so many people with her excitement, optimism, and her awesome Zumba classes! Heavenly Father chose her to feel this pain. For some reason or another, I know that she was supposed to go through this and experience a glimpse of the same type of torture and pain that the Saviour experienced on the cross. I'm excited to see what is next for her and how she is going to use this experience.

We are hoping that about five more weeks of treatment will put her into remission for good. I know with a surety is that this is Valerie's last go-around with cancer. We have a plan. There are pro-active steps and we are going to take full advantage. No more recurrences for her!

We are still in need of donations. Please visit CureVal.org or the Cure Val for Christmas event page on Facebook and help with whatever you can. Many $15 donations will make a huge difference.

Pain

Since Valerie is unable to write at this time, she asked if I would do a post for her blog.   I am honored to.  As her best friend, I can try to give my impression of how she is doing, as much as my words can express. xox, Kerry

It is so hard to see a loved one suffer with incomprehensible pain.  The treatment she has been doing (photodynamic therapy) causes the cancer to explode.  Before it explodes, it swells.  A lot.  She has severe swelling in her neck, chest, shoulder, armpit and shoulder blade, which is causing immense pain.  It is pressing on and blocking the nerves running into her arm.  From what she has said, her pain is like a sharp knife scraping down her right arm along with a constant burning under her skin into her hand.  She has lost all hand and arm function.  Function has been replaced with intense pain.  This makes everyday tasks that we take for granted extremely difficult.  Like doing her hair, or her daughter's hair.  Holding a pan to wash dishes, cook a meal or open a container.  Getting dressed, putting make up on, typing her blog.  The list goes on.  Then there is also neck pain.  The cancer is pressing on and displacing her vertebrae, trachea, jugular vein, carotid, vertebral and subclavian arteries and muscles.  She can't turn her head very far, or look up to take a drink from a glass without pain.  Unyielding pain in her jaw, face, neck, arm, back, chest, armpit.    There is very little relief from any of the pain medications she is taking, leading to uncomfortable, sleepless nights. When your body and mind need to heal, you need to sleep.  But pain does not allow for sleep to happen for very long.  Nights seem to be worse than daytime.  She gets maybe one good hour of sleep.  The rest of the night consists of painful, tearful periods of being awake, littered with spurts of falling in and out of restless sleep.
 
 

Swelling in neck in chest.  You can see it protruding out in her neck, no collar bone showing, port looks small as area is swollen.

Picture Val and I with a view of normal neck several months ago.  Port protrudes further out, collar bones visible.

I see my cherished, best friend suffering.  I feel lost sometimes, wishing I could do more to help.  I can't feel her pain and how much it actually hurts.  I don't know how it tears at her body and mind.  I can only imagine it.  I wish I could feel it.  I wish I could share it with her.  I wish I could take it away.  I see how she is hurting, even though she hides the severity of it most of the time.  I see it stabbing her.  I hate it.  If only I, and all of us who care about her, could feel a glimpse of her pain, we wouldn't have to ask how she is feeling.  A difficult question that she does not want to answer because the truth is so hard to think about and so hard for the rest of us to hear.



Staying positive through such long and enduring pain must be impossible.  Not only does she have physical pain, but she has the emotional pain of not dancing, not teaching her love of Zumba to others, of not being the mother, wife or friend she wants to be all the time.  It takes a great amount of will power and strength to have hope and faith that the pain will subside.  Only Heavenly Father knows her agony.  But He has brought friends and family to lift and hold her when she needs it.  My beautiful Valerie, you are so loved by so many.  If only love could make you better, you would have been healed 100 times over.

Although love helps, it cannot heal all of this.  On to a new chapter in her treatment.  Photodynamic therapy is not working fast enough.  Low-dose chemotherapy starts Monday, the 14th (the same treatment she did last year).  She is not looking forward to it, but is looking forward to being free from pain, free from cancer, and free to live her life as she should be.

My Sweet, Perceptive, Amazing Son

So, I know I've gone MIA a bit with updates and posts. Things have been really tough. I have never known physical pain like I have experienced in the last month. I will elaborate more in that in a future post. I want to keep this post short. Even blogging from my phone poses it's challenges as I am doing it all left-handed. (pretty impressive if I so say so myself)

Ok. So I just had to share this story and preserve it forever so I never forget it. During our family prayer time tonight my pain was at a pretty high level. I really try to protect the kids and hurt where they can't see me, but it was unavoidable tonight. They saw. My 8 year old, Joey, was right next to me as it hit. We were all kneeling and when I put my head down he reached out to me and took my hand. As I was bearing down to get through the wave of pain, he squeezed it. "Are you ok?", he asks. I take a breath and muster up a weak "yeah" that he didn't seem too convinced of. I looked up at Jess as to say, "come on...let's do this so I can leave!" Jess said the prayer. I'm guessing he did that because the kids prayers can be long sometimes.

Joey never let go of my hand.

I heard him sniffing during the prayer. He was crying but trying not to. After our "amen" I took him and pulled him close to me.

"Are you okay sweetie?" He nods. Always trying to be tough. "Can you tell me what's wrong?" He shrugs. "Are you worried about me?" He nods and cries even harder as he buries his face into me. "Can you tell me what you are worried about?" After a moment he says, "I'm worried because you are getting so sick."

Broke my heart.

I assured him that things would be ok and that inside I'm getting better, even if it's hard to tell on the outside.

We cried together for a bit.

I held him until he was better and I sent him to bed with a kiss.

While in his room he had his door closed and his light on. I paid it no attention. Not the usual bedtime protocol, but I didn't see an immediate reason to tell him lights out. A few minutes later he came out and gave me this card.

I will forever remember his cute little smile while he outstretched his arm to me. Giving me a gift from his heart. I'm glad he made it because it seemed to make him feel better.

I thanked him over and over and he ran off to bed. Light off, door open. Like usual. He left me there holding his gift, in awe of his sweetness.

So much for a short post! This has taken me way too long, and my pillow calls (and I'm starting to hurt), but I had to do the story justice.

I love you Joey. Don't worry. Mommy will be okay. I promise.