Saturday, December 24, 2011
And, yes, it has been a pretty good one for me...all things considered. I rested well and it is Christmas Eve!!!
I thought that with everything that has gone on, I needed to take note of how far we have come. Everyday seems to get a little better. The improvements are sometimes so small it is hard to recognize them, but as I search for good in my life I see how I am being blessed.
First off let me start with my hand/arm. This was a huge problem in the beginning. I was in more pain than I thought I could bear. Nerve pain is not anything you ever want to experience. Give me childbirth any day...at least you know that it will eventually end. With a combination of changing my treatment and therapeutic exercises and stretches, I am happy to report that my hand and arm are about 90% back! Yay! I almost have full range of motion, My sense of touch is slowly returning and my strength is getting better. But by far, the BEST news of all is that I am in no pain and am off all pain medications! I almost have a completely happy hand!
My neck was also very painful and swollen. I couldn't turn my head at all. That is gone and my neck is only tender in certain places. I have most of my range of motion back.
The next huge problem we faced was the nausea. Nausea so bad that it was impossible to take 10 steps by myself. If I had to go far and I had no help, I crawled...and I usually threw up on the way there. This nausea was caused by the chemo drugs and the pain meds. So as I weaned off of the meds, the nausea naturally got better. This is the time that I started to loose weight and was almost hospitalized for dehydration because I couldn't even keep water down.
As the nausea got better, the vomiting didn't. Because of a different reason. The drugs are super hard on your stomach and digestive system. Anything that was put in...wanted out! My appetite for food was less and less and my weight continued to decline.
Now for the good news! I haven't thrown up in 2 days!!! That is such a big deal. Such an enormous step forward. That means that I may start to put on weight soon. (feels weird saying that)
The major thing that I'm dealing with right now is crazy, painful mouth sores. They make it very hard to eat, drink, swallow, talk, and even sleep. We are treating them and hoping that they are on their way out too. Really, because the last time I got on a scale I only weighed 95 pounds. Depressing.
I still do daily IV's at home to stay hydrated, and I have absolutely no energy. Walking up and down my stairs feels like a mile run. But these things are easily solved by eating good food and having a body healthy enough to utilize it. I know that will happen with time because look how far we have come!!!
Oh...I forgot to mention somewhere in there that I lost all my hair. It's a bummer, but it is causing me no discomfort other than having to my pride shaken. Having to be a bald, skinny lady again really does suck, but it is the thing that I am least worried about.
So there it is! Your "glass half full" update. :)
Friday, December 23, 2011
So yeah, as you have probably deduced, I'm not happy. It isn't bad news, necessarily, but not a lot of good news.
I am not responding as well as I did last time to this treatment. The cancer's activity is down, but the masses are still there and HAVE shrunk, but not anywhere near where we hoped to be by now (based on last time and the great results we had).
As we listened to the Dr explain where there was still masses and activity I kind of zoned out, so I don't know exact details yet. I'll figure that out when I get my own copy of the written report. All I heard was, "not responding as favorably as we hoped" and I kind of shut down. Been kind of in a zombie state ever since.
So maybe writing this and sharing is good for me right now. I don't know. It does feel good to get this out.
Thank you for your inquiring texts and messages asking how it went. I hope you consider this a suitable answer. Not very personal, but it is a way for me to answer everyone at once and only have to say it once. Know that I appreciate all of your love, your prayers and your concern.
Wednesday, December 21, 2011
Right now I wish this was all just a bad dream and I want to wake up NOW!
I want to eat.
I want to sleep.
To play, to run, to dance.
I want to clean my own house!
I want my body AND my hair back.
I want to feel pretty.
I want to be done.
Man...I sound like a bratty kid. Sorry. Sometimes the situation gets the best of me. The sadness of it all seems to be ever lurking around the corner trying to get me down...sometimes it wins for a bit. Like right now.
I generally don't write when I feel like this. Who wants to read someone elses' sob story? It's depressing.
So because of that I'm going to keep it short. I know these are passing feelings, but I am sad and frustrated. Exhausted trying to stay happy, or to appear happy to protect others from the truth. Truth? The truth is, I am miserable.
At least right now I am. It will pass. Sorry for exposing my weak moments, but I just had to write. Not really sure why.
Monday, December 19, 2011
How do I push past the hardest times? I don't.
I endure them.
How does one endure day after day things that they never thought would happen to them?
You just HAVE to.
Now comes the tricky question.
How can I maintain my love of life when I feel like everything I love about it has been ripped away from me?
...well, the answer is, I pray.
Please excuse me as I expose the thing I treasure most in this world.
I know we are here for a reason. We are not alone and are not forgotten. This world is a place of trials, sadness, illness and death. Tragedy and heartbreak sometimes mold who we are. But is that a bad thing? Do we not learn from these and then the sweet times in life become that much sweeter?!?
For instance, I am SO hungry right now. Beyond what I can describe. My body is just so empty and calling for nourishment, yet it rejects everything I have to offer. This morning I am starting to feel a bit tortured by it.
All I know, is the next time, whenever that will be, that I eat a meal and feel full...I will rejoice!!! Do you ever marvel at how miraculous the human body is? I do. Especially now. I long for mine to function as it was designed. To be strong and happy.
So what does that have to do with praying?
Well, when I pray, I have a confirmed feeling that everything will be ok. That this too shall pass and be for my good. I know that. I long for it. And I know it is coming soon...never soon enough of course, but soon. I just ned to be patient and stay faithful. My faith sometimes wavers, but it is only because my body is weak and suffering. My spirit, though, is totally willing to submit to His will.
I love prayer. Like a telephone up to heaven. I always feel comforted by it. Maybe not physically, but mentally and spiritually it offers me things that are unattainable by any other means.
Try it. Just talk to Him. He is your Father and wants to hear from you. Thank Him for your blessing when you are down. That is actually my biggest "be happy" tool. Gratitude.
I may not be able to eat right now, but my kids are healthy. ALL of them! My husband is too and has a good job to support us. The people who love and support us are beyond measure...i could really go forever! I have my vision and hearing to fully enjoy the sights and sounds of life, my hand is starting to have good function again, I just turned 31...etc.
Life does suck sometimes...but it is also SO good. So count your blessings for me today. And start with enjoying your breakfast! ;)
Friday, December 2, 2011
...continued from last post...
Making it through Thursday was a feat, but then came Friday morning. A morning I will remember forever. Both for terrible and beautiful reasons.
When my 6am alarm went off I felt ok...until I moved. Uh oh...this isn't good. The nausea was back with a vengeance. My world was not right and my stomach was in knots. This Friday was not a special day and Jess had long left for work. I was alone and I had to get three boys up and ready for school. I am still a mom with kids to take care of.
As I started to get out of bed I realized that my arm was also screaming at me. And for good reason too...I had missed a dose of one of my pain medications. It felt like someone had taken a hammer to my forearm and elbow while I was sleeping.The bottle was downstairs. Dang.
With all of the strength that I could muster I literally staggered out of my room. The nausea was ripping at my stomach and spinning my head. I needed to get downstairs to my medicine. As I made it down the hallway I opened Joey's door. "Time to wake up Joe. I need you to get up and get dressed." I tried my best to disguise my voice, as if I felt fine. Trying to sound cheerful, like I usually do in the mornings. Further down the hallway this repeated at Andrew's room. Neither of them budged, but I couldn't care. I needed to get downstairs.
As I made my way down I could hear my oldest, Matthew, up Iand doing stuff. "Thank goodness." I thought. "One less kid to wake up."
I literally stumbled into the kitchen where my pain medicine was and just grabbed the bottle. I knew I had to lay down, and I had a plan as to where the perfect place would be. Near the bottom of our stairs is very central to our house. I knew that I could talk to pretty much any of the boys from there, no matter where they were.
I made it there, fumbled with opening my my bottle (I still can't use my right hand well) took my pills, and layed down. Just as I got there Matthew noticed me. "Are you going to throw up?" He had concern in his voice, yet a very direct tone. "Yes, probably..." and he was gone before I could say any more.
Still no movement upstairs from the younger boys so I muscled through another stomach cramp before calling to them, "c'mon boys, I need you to get up." Next thing I know my sweet 11 year old, Matthew, has brought me a tall glass of water and a large metal bowl. He places them beside my head on the carpet, and I look up at him. "Thanks!" "You're welcome."
The nausea is so strong I put my head down. I hated that he was seeing me like this. Then I hear his voice coming from upstairs waking up his brothers. "C'mon guys! Get up. Mom doesn't feel good." Then...I threw up. Matthew's bowl and drink of water were much appreciated!
Just as I was finishing up (thank goodness) Joey came down. Dressed and ready to go. He didn't say anything, just came and layed next to me. "Hey sweetie...I'm ok...I promise. I need you to go eat breakfast ok?" He nodded, smiled softly and went into the kitchen. I could already hear that Matt was in there too. He came out to check on me. I asked him for some tissues to blow my nose and if Andrew, the youngest, was up. Not long after that Andrew trampled down the stairs.
As he approaches me laying on the floor he asks, "Are you sick mommy? Is that bowl so you can throw up?"..."yep" I get out. "I need you to go eat breakfast ok?"..."k". And he gives me a quick hug and goes to the kitchen. But just for a moment to come back with the question, "mom, can we have eggs for breakfast?"
I had to chuckle a little. I obviously was not in any condition to provide a hot breakfast this morning. I had actually thrown up again. But...I knew that I had taught Matt to cook himself scrambled eggs recently and he had done it a few times, but he had never cooked for everyone. "You will have to ask Matthew if he feels like making everyone eggs." Matt jumped at the idea and did an amazing job scrambling up 10 eggs for him and his brothers! As I lay on the ground in pain and discomfort, it still amazed me that this was all going so smoothly!
I felt sicker than I ever have. So much that I couldn't get up from the floor. Yet we had one of our easiest mornings EVER! No fighting, no whining. Just cooperative boys, doing what they were supposed to and keeping an eye on me at the same time.
THEY EVEN GOT A HOT BREAKFAST!!!
I have never felt so low, yet I have never ben so proud and in love with my boys. I hope they never have to see me like that again, but they sure did show me what they are made of.
Their ride arrived and they were off to school. Just another day to them, but one I had to tell the story of so they can read about it someday. So they know that they are my heros.
Monday, November 28, 2011
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|
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.
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...
Wednesday, November 16, 2011
Tuesday, November 15, 2011
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.
Sunday, November 13, 2011
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.
Friday, November 4, 2011
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.
Saturday, September 24, 2011
Laying here in bed at 3 am...obviously NOT sleeping. Figured I could share how this week went. Instead of starting into the back of my eyelids being frustrated that I am awake, I will be grateful that I am just uncomfortable at the moment, and not in pain. That is a huge improvement over the last couple of days. I also love that I can blog from my phone!
It all started out great this week. Tuesday's treatment went well. My friend Brandy took me and I didn't have any alarming reactions. Just mild things like fatigue and slight fever that I can pretty much sleep off with a nap. I taught my Zumba Fitness class that night and I felt like my energy was pretty good and class went well! I get very encouraged by that! Sometimes my breathing is affected, but I can usually use focus to get past that.
Then Wednesday came. Oh boy. See, they increase the doses of both of my medicines each time I go until we reach full dose. So I really never know what to expect. Always changing. On wednesday I was with Kerry, and I was having some of the harder reactions that I had experienced last week.
The PME is what they call a "push" because it simply gets pushed through my port. Takes about 5 seconds. But the reaction hits about an hour later and can be wicked. Happened once last week, and again on Wednesday.
First comes the hot/cold feelings. It is interesting because I start to feel very cold and my body will shake. The shakes can be kind of alarming because you can't control it and they can get going pretty hard. I put socks on (because Arizonans typically don't wear socks unless forced to) and wrap up in a blanket. That's the cold part. The hot part is that I start to run a slight fever also.
The second part of my reaction to the PME is that I hurt. I hurt all over. Flu-like muscle pain x's 10, that goes deep into the bones. I feel it from my face to my toes. Kerry, being frustrated sitting there watching my writhe around in my chair, started to massage my back and shoulders. This proved to be a great help! I was able to relax and distract my brain long enough to avoid taking pain medication. Which, if you know me, I will only use as a last resort. Thank goodness for Kerry's wonderful idea!
Then there is the second medication that I get called Polly MVA. It is given as an IV drip and takes about 2 hours. This is the one that brings the fatigue and usually a mild headache. I use a homeopathic medicine to help ease the headache and again, just try to relax.
So, even with all those reactions, I made it through treatment ok and after a few hours of being home I started to feel what I call "functional". I'm not totally useful, but I am happy and can do most things for myself. Cook, drive, etc. It was good timing too because the first fundraiser for me was last Wed.
Brandy put on a super fun Lia Sophia jewelry party. I was looking forward to it. I went and had a great time, although that's when the worst headache of my life started. I didn't know it would be though. As I started to feel my head hurt a little I just thought I was tired and needed to rest. So I sort of ignored it. I don't like to let how I feel control too much of my life. Yep...I can be a pretty stubborn girl!
So I stayed. Probably a but longer than I should've, but again...stubborn. Once I got home (no I didn't drive) things did not improve. Sleeping was something that I wanted badly, but I only got an hour at a time. The pain in my head and face were so excruciating it made me nauseous. I couldn't walk, only slowly crawl. At this point we took out the strongest pain medication that we have. 800 mg Ibuprofin tablets. Didn't even touch the pain. I was starting to panic as I could see no end to my suffering. Thank goodness I wasn't alone. My sweet Jess was awake all night too. Trying to help me, but of course I could find no relief. There was nothing he could do but be there for me.
Eventually the night ended and Thursday came. The pain was slowly starting to ease up, but it took about 4 hours for me to feel will enough to get out of bed. Jess stayed home from work and got the kids off to school. I got better and better as the day went on and, though I didn't make the decision easily, I went ahead and taught Zumba Thurs night. Teaching lifted my spirits and made me feel strong. I felt like it was a miracle that I taught at all, let alone that it actually went well!
Friday. Always a day to look forward to. For me it's my last treatment of the week. But unfortunately it was a near repeat of Wednesday, except the head pain came on strong before I even left the office. Got some string pain medication in me right away this time. I was so scared to feel the full wrath of it again. Because of the medication and the fact that it still didn't take away ask my pain I got a sub for my Friday night class. I appreciate so much when a friend of mine subs for me, but I do try to avoid it at all costs. Thank you Ana for subbing and also to those who still went to class. Means a lot to me.
So that brings me to now. Still relying on pain meds and not sleeping (which is weird because the pharmacist said it WILL make me sleepy). Hoping that everything goes well with me today so I can go to a Zumba fundraiser being held for me in Phoenix.
Whew! This post was longer than I intended it to be! Well, going to try to rest before I have to get out of bed. Hoping to fall asleep for a quick nap. I hope, I hope!
Tuesday, September 20, 2011
Thursday, September 8, 2011
A calm ocean. Sitting in a boat soaking in the rays. Purely perfect. Waves start to come in. You see they are small. Just the right size to play in! Boogie boarding, surfing and all sorts of water fun. When you have exhausted yourself with playing you get back to the boat to go and peacefully lie in the sun once more. The smell and the sound of the water are so calming.
A bit of time passes you look off into the horizon and you see a storm. Knowing that you need to get to shore where it's safe you start your small boat up. What you didn't see was how fast the storm was coming. In no time it hits your little boat with vicious winds and crushing waves. You hold on and try to press through. But your visibility is poor and getting to shore seems nearly impossible with the boats small engine.
A huge wave hits your small boat and nearly throws you overboard. Choking on salt water and holding onto the rail you don't know what else to do but to pray. Down on your knees you pour out your heart in prayer and ask for help. You notice that even though the storm is still raging a large rescue boat has found you and is coming your way! You say a thankful prayer in your heart and wave your arms in the air. "Over here! Help me!" You welcome the safety of the large vessel. Once aboard the storm rages on, but you now have the help of many people. They have provided you with shelter and nourishment. Friendship and comfort. Peace of mind. Together, this large boat with many people are so much better equipped to handle a storm than you were all by yourself.
That's how life is. Ever notice that we most appreciate the calm waters only after the storm has hit us? I think the biggest mistake we can make is to not bask in the sun when the waters are calm, but to think, "is this all that life is about? Floating here?"
Do you know what I miss? I miss being boring. I miss my old boring life. And by boring I mean wonderful!
If you are in a place right now where you feel stuck in a rut with things, maybe it's time to be grateful for it. Maybe you get up at the same time everyday, go to work at the same time everyday, eat lunch at the same time everyday...you get the picture. Or maybe it's that you have young children and it's diapers and spit-up, crying and whining, owies and Elmo. Whatever your "rut" is, maybe it's time to see it as a blessing. Calling it a "rut" might not be the best thing to call it either. Sometimes it feels like that, but really it is just a consistency that you have in your life. Things that you know are there and need to get done for your and your families days to go well. Things that, although they may not be the most fun, are important. That means you are important! That means your so-called rut is a HUGE blessing in your life. It's the calm water!!! Love this phase, as it is sure to follow the cycle of life and someday it won't be so calm.
Life can offer different things that add a lot of excitement, different waves. Fun ones like a new jobs, new house, new baby. Those are great! Then there are the violent waves. Illness, loss of a loved one, car accidents and natural disasters. Those are the kind of excitement we don't want and don't ask for. Then when the waters get calm again, and they will, you can look beck on the storm and see all the things that you learned.
My goal is to more appreciate what I am experiencing now. Even though right now I kind of wish my life was a little more 'boring' (read calm), I can appreciate little moments. No matter if you are playing in the nice waves, enduring a storm or just floating along in the calm water, try to take a step back once in a while. It is easy to look back and appreciate something, but can we do it now? Is it possible? Hard sometimes?...Yes! But definitely possible.
Tuesday, September 6, 2011
Monday, September 5, 2011
I have included a lot of links in this post as I hope you do your own reading on a few of these things. :)
We are going to do things differently this time and hopefully better. The Genetically Targeted and Fractionated (GTF more commonly called IPT) chemo protocol that we used last time worked very well. (Envita calls it GTF because they take it a step farther and make sure the specific agents that they use will work you your specific type of cancer.) It got rid of the 5 inch long mass in my chest. But it came at a high price. Not only financially, but it was very hard on my body. I lost a lot of weight and simple things like eating and using the bathroom became huge successes if they went well, because they usually didn't. And of course having the toxic chemotherapy agents running through your veins is not only harmful to the cancer, but also to the rest of your body. Hair loss is only the most visible symptom. I always said (when I was in remission) that if it happened again I would do it different. Find a different way.
Sadly, as we know all to well, all alternative cancer treatments are frowned on by insurance companies and they will not help. But we believe we have found a protocol that will work for me. First of all I am eating according to the book "The Stupid Diet". Basically cancer likes inflammation and sugars, so I am avoiding as best as I can the things that fall into those categories. I want to drain the beast of it's power! Also taking a butt-load of vitamins and eating organic food to minimize the toxins that I am taking in so my body can focus all it's energy on the task at hand.
Then, as soon as we can, we will hit it through specialized IV treatments. Two different agents will be used.
1. Poly MVA
2. Polymannan Extract (PME)
It just takes a quick google search on both of these to learn more about them.
I will go in to my Dr in Scottsdale (Envita) 4x's a week for about a month. We are hoping that by that time we will see (and I will feel) a massive change in our situation. That the therapies are working. Then we will decide whether to raise more money, or if it would be a good time to switch to an oral form of Poly MVA. We hope that will be the case. This was the case for a young man with lymphoma that they recently helped with a mass much larger than mine on his neck. His family couldn't afford the GTF chemo so they opted for this treatment as it is very promising, has less side effects and costs a quarter of that GTF costs. His mass disappeared and he had his whole life ahead of him.
That's the plan for me too! Thank you for following me on my journey and for helping us out in anyway that you can. Deciding how to go about treatment is a personal and difficult decision. One side of the medical field pushes hard twords chemotherapy and radiation while the other side (all kinds of doctors, including oncologists) advise to stay as far away from it as you possibly can. I have dear friends and family members that are alive today because of chemotherapy, radiation, and the things offered through conventional cancer treatment. I don't want to come off as putting it down in any way. It is just not right for me. I know that with more surety than I can even describe. The decision should be left to each person and family dealing with cancer and one side shouldn't ever look down on the other because everyone is only doing what they think will be best and have the best end results.
I love my life! I love everyday. Lately I've tried to make it a point to "take in" something new everyday. A beauty or a blessing that I may overlook by rushing through life. Just to stop and notice things around you can make you feel closer to our Creator. That is a feeling I treasure. Now to take on today!
Monday, August 29, 2011
So emotional today. I feel physically worse than I ever have and it has been very hard to keep my spirits up. I have relied heavily on close friends and my family. Is it possible to be surrounded by loved ones and yet feel alone? I don't get it. Maybe it's because no one can really feel what I feel. (Not that I ever want them to.)
I also have a hard time with being able to see the cancer. I don't like that I look in the mirror and there it is. I feel it every moment of the day and if I have to cough, sneeze, or blow my nose the pain can take me to my knees. It just feels so scary this time. It hurts so much.
I look at my children and start to take in every moment. Their smiles, their faces, their laughs and even the fighting. "What if this is what brings me back to our Father in Heaven?"...crosses my mind, but I shake it out. Hard to shake it out. Maybe everyone that is diagnosed with something that could potentially take their life contemplates what would happen if they were to die. I don't know. I hate that the thought even crosses my mind, but I hope that it is normal...and that I'm not being melodramatic.
*pause* (I have to go do bedtime stuff)...
As I came back to the computer and read over what I just wrote, this thought was brought to my mind...I let fear get a hold of me today! Fear will make you feel alone. Fear will make you think thoughts that you might not otherwise entertain. Fear will freeze your progress and make you doubt your own abilities. I vow to all who read this that I will shake my shackles of fear and have faith.
Faith in what? Faith that all things happen for a reason. That my Heavenly Father hasn't forgotten about me. Faith that all things are possible though our Savior, Jesus Christ. Faith that the strength to do this was put into me and that I can tap into it whenever I want! I want to!!! I want to NOW! I am going to immerse myself in my faith. For where there is faith, there can be NO fear.
I am glad that my sweet Lily interrupted my writing. I am also glad that I wrote my true raw emotions in the beginning of this post. (I was tempted to go change it.) But I think it is a real look into the beginning of my cancer fight. The fight starts in your mind. Not a fight with yourself necessarily, but a fight to find your better self. A self that learns to tap into a higher power of strength. Nothing you can see or touch, but it is so real. FAITH. If you choose faith, it will crush your fear. (Even as I type this I have stopped crying. I love it!)
"Fear not I am with thee, oh be not dismayed. For I am thy God and will still give thee aid. I'll strengthen thee, help thee, and cause thee to stand. Upheld by My righteous, omnipotent hand."
Saturday, August 27, 2011
Here is a quote from my last post: "Hard to believe that this girl, who has had more Dr appointments in the last year than I've had my entire life, can take a breather. Breathing is good. Breathe and enjoy life." Crazy the irony, because the simple act of breathing is what is hard for me right now. Literally. I have a 4 cm x 3.4 cm mass in my neck that is displacing my trachea (wind pipe) and my thyroid gland. The size of it doesn't seem as alarming as the 9cm x 13 cm mass that was in my chest last time, but when you think of putting a foreign object the size of a golf ball in your neck...that image is unsettling. You can see the anatomy of the neck in this picture, now put that golf ball at the base of the neck, right above the collarbone.
It is also shocking how fast it came on. My last scan wasn't very long ago. Apparently lymphoma isn't like most solid mass tumors that take a bit of time to grow. It only needs a few weeks.
So it is safe to say that I am in a state of shock. I just want to go on with life, not letting it affect the way I think, but it is honestly a struggle right now. I will get myself together and push forward on the path that I am on, but right now I just don't feel like being strong. I just feel sad. Understandable, I know, but I hate being sad. I don't want to let myself feel it, yet at the same time it feels so good to just let the tears flow freely.
How can I feel terrified and hopeful at the same time? I don't know, but I do. We did this once and we can do it again. As I started writing this I wasn't sure if I'd go through with posting it. I just felt like I needed to write and vent. To get my feelings out so hopefully I can let them go, but not totally sure I was ready to share my struggles with everyone yet. As I am nearing the end of my thoughts right now I have felt my inside trembling calm down and the tears seem to be done, for now. So I am going to call a few family members and close friends that I haven't talked to yet, and then post this.
I need you. I need your encouraging comments. You give me so much strength. Now that I am feeling brave enough to share I will do it...before I change my mind.
***I wrote this On Saturday and I am just posting it now. A lot has happened and I feel less sad and "trembly", and more resolved and determined. When you find out bad news you go through phases with it. Different emotions at different times. I'm glad the pity party phase is over. It's my least favorite. On to the "we can do this!" phase!***
Friday, July 1, 2011
To catch you up from my last post I did get a second opinion. The second Dr saw something TOTALLY different than the first. He was concerned about my uterus and some lymph node activity in my abdomen.(*sigh*) So with that I went to get an MRI of my torso and abdomen, with and without contrast...which means it was a loooong scan. It took over an hour! That's a long time for anyone to hold still...especially for me! But with some minor muscle cramping, and having to ignore a few itches, I did it!
The results call came yesterday morning...and by now you have probably figured out that they are WONDERFUL!!!
I feel such joy in my heart! and I am so grateful and humbled that I have made it through to the other side. I always knew I'd be ok. I just knew it. Hard to explain. I knew that this was an experience that I had to endure and endure well. That there was a lot to learn. Though I would be lying if I said this feeling came right away. I was so fearful in the beginning that cancer would take me away from the things that I prize most in the world...my sweet children, my husband. There was just so much fear around even saying the "c word". But with information and a lot of praying I finally felt peace and a faith that I cannot describe. I just knew I'd be ok, though I didn't know what the journey would be like. I had to take my faith, and hold onto it with both hands, and hand over the process to the lord. However long it takes, however it will happen, I just knew it would.
I've often said to Jess (my husband) that I wish there was another was to say "I love you". The phrase can be so overused and when you really want to express deep love for someone it seems far too simple. I feel this way with "thank you" now too. All I can hope is that the spirit with which I say it can come through my writing. Thank you for supporting us. From the bottom of my heart. Thank you for donating money, prayers, meals, rides, babysitting, photo sessions, house cleaning, encouraging notes, visits, fun gifts and friendship. I know there is more. The community support that I have felt will be forever a golden memory for me throughout my life. I make it a point to count my blessings. Please know that I always count you.
We have all sent up our petitions to heaven for my healing, now lets send up our thanks and praise to Him. We must not be like the 9 lepers that forgot to give thanks.
I am in remission...I am not "cancer free", nor will I ever be. Remission means "a temporary or permanent stage when cancer is not active and symptoms disappear." Cancer free is, in my opinion, overused and misused. Once you have cancer you are never free of it. It is like a monster in a closed closet. Trying to scare you, but you keep shutting the door in it's face. Having cancer is an experience that will change you forever. It has changed me, my family, my marriage and my faith. All for the better. I am actually grateful for it. Crazy me! :)
So there it is! Hard to believe that this girl, who has had more Dr appointments in the last year than I've had my entire life, can take a breather. Breathing is good. Breathe and enjoy life. And again....
Wednesday, May 18, 2011
Now for the part that is more on the bummer side. There is a new spot on the right side....actually two spots. Something is showing up by my right collar bone (very small, about 1.6cm) and another next to the right side of my heart (unsure on size). So that's why they want more imaging I guess. To get a different view of those areas.
It is not an emergency or anything that seems like it needs immediate attention, so I am going to get a second opinion on the scan and take it to another radiologist. Then depending on what the results of that is I will decide what kind of further imaging to do if we really need it.
So there it is. The wonderful news and the bummer. I see no reason to focus on the bummer though. I will certainly follow up on it, and work with my Dr, but can we just enjoy the healing miracle that has happened inside of me so far? All of you that have sent up your petitions to our Heavenly Father, can you please say a prayer of thanks to Him in my behalf? He is a loving Father and we should express our greatest gratitude for his mercy. I still have more to learn as my journey continues on, but I know I'm not alone.
Monday, May 16, 2011
***I will get to the results, I promise, but maybe you can get a better understanding of how I feel if you understand a bit more about the whole process. ***
What is a PET scan anyways? I had never heard of it before I had to have one. The one we did last Monday was my THIRD one. PET stands for Positron Emission Tomography and it can distinguish between normal cells and rapidly dividing cancer cells. I have a very elementary understanding of how it works, but here's a rundown of what happens during a PET scan appointment.
First of all you have to come in fasting so that your blood sugar is low. You get to sit down in a hospital recliner (like the one pictured above) and after some friendly small talk they "accesses" you. I have a port in my chest, so I get the needle stuck in there. (I'm used to it by now.) If you don't have a port they just stick your arm. After that poke she pricks your finger to make sure you blood sugar is low enough. I never have problems with this. My blood sugar will drop very fast after fasting just one meal.
Then comes in another person (in my case it is another lady) and she has the scary stuff. The radioactive glucose. That just sounds bad. She is wearing heavy duty gloves and has a syringe with warning labels all over it and is encased in a silver metal tube. Then she quickly injects it into my bloodstream. While you try not to think too hard about what you just got injected with or what it is doing inside of your body you get to lay in your comfy recliner for the better part of an hour. They give you a pillow and blanket, shut off the lights and tell you to move as little as possible. Right. I struggled with this the first time, but by now I'm a pro. Off to dreamland I go.
So I spent the day shopping at a nearby Sprouts, stocking up on some organic produce and other hard to find items, then I spent some time at the LDS bookstore by the temple in Mesa. Luckily both places were fairly empty and I wasn't near very many people...good thing I didn't glow green or anything...that would've given me away. ;)
So fast forward to getting the results. Tell us what they are already Val!!!
That's what we want right? That's why I went through all that trouble for that scan...to get results. Good or bad, I just wanted to know. Well the call comes in that the test results are...(drum roll please)..."inconclusive". Yep. Wonderful. This is about how I felt.
So now I have to figure out what to do with that. More radioactive scans? Second opinion? *sigh* I guess that's how it goes. Never easy.
I have a phone appointment with my Dr tomorrow afternoon. We will talk about the options that we have. I am looking into a lot of things right now and I really like what a certain Dr in New York is doing and his amazing success in curing cancer...if I'm not already in remission...who knows. I really would love for this to be the end of my journey, but if it were up to me I wouldn't have started this journey. Shows how much I know. Look at how much I've learned. I would've missed out on it all.
All I know is that I feel great, my life is very blessed and I cherish every moment I have with my family. I will not let myself worry over things that I have no control over yet because I lack knowledge. My faith carries me through and I rely heavily on prayer as I seek for the knowledge that we need.
Tuesday, May 3, 2011
Wow! What a picture...it was taken in Nov of last year. As you read on you will understand why I chose to post it now.
I realize it has been a very long time since my last post and I am blogging from my phone so forgive any typos that slip by. :) I have felt pretty guilty for not continuing my blog. I think I have been trying to be "normal"...to find my life before cancer. To almost hide from what I went through. I would answer peoples questions about how i'm doing, but not to draw any undue attention to myself. I find that even now I don't really want to look at the pictures or see video from when I was going through treatment. Like punching a wound that is trying to heal. Brings back memories and fears. I just wanted to be my old self. I am starting to realize that is an impossible desire. I will never be the same. I am changed and because if the generosity of others I am forever in their debt and must pay it forward.
I am not quite out of the cancer woods yet. I have a PET scan this Monday that quite honestly scares me to death. I have procrastinated this scan for over a month now because I just dont want to do it. After my treatment was over, by all estimations of how the mass was shrinking up to that time, we have been saying that I am in remission. Because of the radioactivity of the test the soonest we could get a look inside of me was in April. Well the dreaded PET scan it's fast approaching and I am trying so hard to cling to my faith and shun the feelings of fear. I am blocking out the "what ifs" that try to bog me down.
As I think of going to the dr on Monday my heart starts to pound and I feel the tears trying to sneak their way out. How badly I want to just grow my hair back and pretend this nightmare never happened. But then I stop myself. This wasn't a nightmare at all...this was a dream come true. I was part of a miracle. And to hide from that prevents me from expressing my utmost gratitude to my Heavenly Father and to those who have helped us on our journey. I've been thinking of the 10 lepers that Christ healed. Was it that only one was grateful? I don't think so. He saved them from a lingering death. But only one thought to express his thanks. What were the others doing??? My guess is celebrating with their families and rejoicing! Excited to get on with their new found health and plan their future! Surely they were grateful, but failed to express it. Sadly I feel I more closely relate to the 9. I am sorry for falling off of the face of the earth. I am so grateful to all of you for your support, prayers, concern and love. I promise that with my experience and with my newfound outlook on things I will reach out to others who need help just as you all have rescued out to me. Thank you from the bottom of my heart.
And I love this picture don't you? Shows how far I've come. Me with my shiny cue ball head with ladies who were also going through treatments of their own. I see hope in my eyes and a determination to fight and live! So I say, "bring on the scan!" Bring it on.