Go, Val, Go!

Help me get my family get through a tough time as we get ready for my upcoming month long stay in the hospital for a stem cell transplant.

Hey there! My name is Valerie and I've been dealing with the ups and down of cancer treatment for Hodgkins Lymphoma for almost 3 years. (Please read the very important update below.) This life changing news came in July of 2010. My children were just 3, 5, 6, and 9 years old at the time and I was an energetic 29 years young. Talk about stoping you in your tracks!

So many options to consider and choices to make. In that time we have done everything from the most natural treatments and lifestyle changes to the intravenous use of high dose vitamin C, photo dynamic therapy, and ozone saunas. We have done specialty "targeted" chemo with immuno therapy. All worked at shrinking the cancer to an undetectable size to the scans, none kept it away.

We spared no expense to try and get me well. Many fundraisers got us through these years, but new growths in new places kept appearing. Three months after I had a "clean" PET scan, I went though the most difficult time of my life. I started to feel sensations in my arms that turned into excruciating nerve pain. I also felt sensations and numbness in my legs. In a matter of weeks I went from walking to completely paralyzed from my chest down all the while experiencing burning nerve pain in my arms and hands. It was scary. I wondered how much of my "old life" I'd ever have again.

I underwent radiation to my spine, because a tumor was crushing my spinal cord, and a regimen of first line treatment known as ABVD chemotherapy. Although it took me several months to learn how to walk again and care for myself, I'm happy to report that today I walk and function so well that when people find out what happened, they are surprised. I'm even learning to dance again! Things were really looking up, and I was excited to get on with my life trying to once again be the mommy and wife I like to be.

Then the brain tumor came. Ahhhh! Seriously?!? My vision suddenly blurred, we went in and there it was. Literally messing with my head! Apparently, I'm one of the few people on the planet that has had Hodgkins Lymphoma manifest in the brain. Lucky me! Haha! (I'm so kidding!)

I had to go under the buzzing beams of radiation once more, but now it was pointed at my head! I got through that fine, but upon another PET scan (I do a lot of those) another tumor was discovered growing in my chest. I went back on ABVD and after 2 cycles it was determined that the dang tumor was growing and had doubled in size! It seemed to catch my doctor by surprise, it certainly wasn't what we wanted to hear. Looked like my body had grown resistant to the treatment. Boo.

So here we are, almost 3 years from the start of this wild ride. I have a new doctor at the Mayo Clinic, who is a leading expert in his field, and I have just completed 2 cycles of a new regimen called ICE chemotherapy. Yay!!!

But wait...the fun has just begun... I am preparing to get an autologous stem cell transplant. That's a fancy way of saying we are going to make you really sick and keep you in the hospital for 4 weeks, then a month of 24 hour home care and confinement. Joy! Hehe! I am dreading it, yet I'm looking forward to it at the same time. We hope my Dr is right and this will be the thing that ends this cancer ride forever!

I want hair! I miss fussing with it every day! (Vain, but so very true.) So for the next 3 weeks,

I have a million appointments to prepare me for my 6 days of high dose chemo (bleh) and the following stem cell transplant. My doctor, Dr. Reeder has the belief that this treatment will give me the best chance of staying in remission for the rest of my life. That's what we want more than anything!

My younger kids will ask me, "mommy, is the cancer gone yet?" once in a while, and I want to be able to look into their eyes and say, YES!!!

I hate that money is a part of all of this stress, but it is. My husband is my rock. I need him to be available for me and our 4 kids without having to worry too much about work and paying bills. We are trying to raise enough money to sustain us for the next 3 months.

The money will be used for gas, co-payments, food, electricity, water, car payments, insurance payments, and phone bills. There are so many generous friends of ours that have already helped make miracles happen for us. For this we are very grateful and eternally indebted to them. I only hope to pay it forward in the future for someone else.

Our goal for this campaign is to get the word out to 1000's of people and get as many $5, $10 or $20 donations as we can.

"Many hands make light work."
Give a little, share a lot! Thank you!!!

With Great Gratitude, Valerie Aguinaga

Click here to read my personal blog.

Update: We recently found out that Valerie was misdiagnosed in 2010. She DOES NOT have Hodgkin's Lymphoma. Her new diagnosis is Large B Cell Lymphoma and we were stunned to learn that she has been receiving the wrong kind of chemotherapy for over a year. This this is most likely the cause for her relapses but we are grateful that her doctor was diligent enough to connect the dots and put her on the right track. This development set her back in treatment for at least 2 months. For more details about this click here. Also, click the Donate button below to make a donation.

Recovery Weekend.

Valerie finished her her week of infusions on Saturday. She only received Cytarabine it was the infusion that took the shortest amount of time but it seems to have the biggest impact on Valerie's body.

Valerie spent most of the weekend in bed resting and recovering. She occasionally got out to use the restroom but that's about it. Its seems crazy that just last week she was doing awesome, going places, eating normally, going to church and then after a week of getting beat up by the chemo she's down. Hopefully she will recover from this cycle as fast as the last one. With the last one, Dr. Reeder seemed very pleased with her recovery.

On Thursday she goes in for her last Rituxan treatment and then we wait for next Thursday when she goes in to get her PET scan. Please pray her that the treatment that she has been enduring is doing its job and killing cancer cells so that she can move on to the stem cell transplant.

Thank you for the support. This is the last week of this online campaign so please keep spreading word for us. We are so close to our goals. The last day that anyone can use this site is Friday. I will move all the content to a blog where I will continue to post updates, status reports, and a donation widget. I will send the link out by Friday. Thank you all.

Cycle 2 Started.

Valerie got started with her second cycle of ESHAP this week. Even though there was a slight bump in the road she is on her way and things are moving right along. Also it looks like the stem-cell transplant is on the horizon and hopefully things will get really exciting in the next few weeks.

On Monday, she went to Mayo to get her first infusion of the week but after her pre-chemo blood test the doctor decided to postpone chemo because her neutrophils came back at .99. She needed to be at a 1 but she was one hundredths of a point off. The sucky part was that this decision was made AFTER she received her high-dose methylprednisolone (steroid) pre-med.

She came home and immediately hit the couch. She says that the steroid side-effects are worse than the chemo side-effects. Usually the plan when counts come back low is to give her a Neupogen injection but Dr. Reeder did not want us to do it. He wanted to see if her counts came up without the use of the shot and that had me very concerned. Mary, her transplant coordinator has already scheduled Valerie's slew of stem cell related appointments and more than a 2 day delay would have thrown it off. Nervous time!

Tuesday morning came and she drags herself back up to Mayo after a sleepless night with her amazing friend and Arizona mom, Miriam, for another blood test and hopefully chemo. Somehow her neutrophils count shot up to a 6.19 with a total white blood cell count of 7.5! They had to retest. Divine intervention??? Maybe so.

She completed her chemo infusion for the day and will have to go everyday until Saturday. Unfortunately with the combination of chemo and steroids, she had another sleepless night this time with severe nausea but she is well into the next step in the process.

Here is part of an email from her stem cell nurse/coordinator Mary. "Dr Reeder told me that you're starting chemo today, 5/20 and he wanted to plan to move you forward to transplant off this cycle.  He wants you to get a PET scan ~ 6/6 and see him 6/7...and move forward from there if ok." I don't want to be too presumptuous but that sounds to me like Val will move forward with the stem cell transplant in June but with all the factors in play, plans can change.

Thank you all for the support. We couldn't do this without all of you. I'll end this update with a Facebook post by Valerie from last night.

"Wow. I'm laying here. Not able to sleep, honestly suffering through how I physically feel right now. Nights are the worst. Nothing else to do or think about except that I often just want to sleep. Sleep is a form of mercy. This is a video about Zach. He died a few days ago at 19 years old. This 20 minute video inspires me and, if I'm honest, scares me too. I like the perspective that cancer is a gift that forces you to face the reality of life and to just live happily through it because though someone has cancer, that IS their life and they only get to live it once." Click here for the movie.

Its been kinda quiet around here.

The last couple of weeks have been pretty quiet and that's a good thing. Valerie has had some good days and bad days. On good days she is up doing things around the house, going on walks or park trips with the kids, and even goes out shopping. On bad days, she pretty much waits for the good days. As of right the now, biggest part of her treatment, is managing her blood. Twice a week she goes to Mayo to get her blood counts checked and if her white blood count and neutrophils come back low, She needs to take Neupogen. This is the magic juice that keeps her from becoming neutropenic. 

Valerie has a love/dislike relationship with this stuff. In a way it is liquid gold because it prevents her from the neutropenic state. Chemo kills cancer cells, but unfortunately it also kills other cells in your body. It messes up your digestive system and destroys your immune system. After chemo, the body becomes very vulnerable to infections. Even an infected hangnail can land someone in the hospital for a few days. Valerie's last hospital stay was because of she had an infection in a neutropenic state. 

So where does the love come in? I believe that this drug and another called Neulasta is instrumental in increasing the survival rates for cancer patients in the last decade. We love this because it helps her survive her chemo treatments by keeping her blood counts elevated. 

The downside to this drug is that it causes severe bone pain. Stem cells are created in the bone marrow and in Val's case that means the pelvis area. Over the last few days, Valerie has been losing a lot of sleep because of the bone pain. Her body is hard at work creating stem cells and she feels every single one of them manifesting right there in her hips. This must be a very strange feeling. It also gives her headaches. 

So whats next? On Thursday she gets her Rituxan infusion and this coming Monday she restarts her R-ESHAP regimen. She will be doing 5 straight days of chemotherapy and hopefully she be able to recover from it like she did her last infusions. Aside from the pain, discomfort, and lost sleep from the Neupogen shots, she recovered nicely but Round 2 looms. 

Hopefully things will get exciting soon. Two weeks after her next treatment, she'll get a PET scan and then Dr. Reeder will decide if she gets to move on to the stem cell transplant. THAT is what we are praying for so please send prayers and good vibes Val's way. 

Once again thank you so much for the support and donations. We are so close to meeting our online campaign goal. This is going to make it possible to pay for time off of work during treatments and stem-cell transplant, co-payments, gas, food, home related bills and small medical related bills that seem to be popping up by the minute. If you choose and would be so kind, please continue to share this site on Facebook, Twitter, blogs, Pinterest, email, or any other network you might be a part of. Thanks again.

Goin Crazy, Feeling Lazy

Here's a blog post that Valerie wrote today. To read the rest of her blog click here.

Whew! Today has been tough.

I am usually against writing posts that just list off my problems, but for some reason I feel like writing...so I write!

The blood booster shots that I get everyday (Neupogen) are really kicking my butt!

I woke up at 2am pretty much writhing in pain in my bed. Sorry to be so graphic with it, but it is painful. My poor husband woke to my cries...again.

When they say to expect "bone pain" that just doesn't prepare you well enough. I get a constant headache and ache in my muscles with the added bonus of feeling like someone is sticking a hot poker into my hips on both sides. Not all my bones hurt, just my hips, and it comes in waves. The pain often brings me to my knees though, and the headaches make me nauseous, and sometimes I do the cute cough-'till-you-gag bit. Veeery attractive.

While my dog loves when I spend all day on the couch, I don't.

I did manage to push through and drive my kids to school, take a ride with a dear friend and go to Mayo, then I drove to pick the kids up from school. It isn't much, but I'm go grateful for even that much of a day!

Now to find peace in just resting and trying to manage he pain and discomfort.

I wish I was doing housework! Cleaning bathrooms, doing a mountain of laundry, organizing closets and cleaning floors sound like a nice way to spend a day. I can't believe I said that!!!

Hehe...oh well. Like I said, I just need to find peace in living my lazy lifestyle. Not by choice, but by force. I know I'm not lazy, I'm recovering...but I feel lazy.

The clock moves really slow sometimes when I just want to see Jess. Come home from work babe!!! I need a couch buddy!

First week of chemo complete.

Valerie finished her first week of chemo on Friday and things seemed to be going smoothly...until Friday night came. The last day of chemo hit her pretty hard. 

Her first day of treatment was actually last Thursday on April 25th. She got what seemed like a massive dose of Rituxan. This drug is specific to Non-Hodgkins lymphoma.

When she  was rediagnosed recently her doctor mentioned that the sample tissue that was used for the biopsy was very high in CD20. This is a protein that is expressed in all stages of B cell development and is found in B cell lymphomas. Basically CD20 helps Valerie's cancer grow and this should have been a major clue to the pathology lab in 2010 when Valerie was initially diagnosed with Hodgkin's. Rituxan's job is to inhibit CD20 and she should have been given Rituxan three years ago. Rituxan is not chemotherapy and has no significant side-effects. 

After the Rituxan came the chemo. She started on the new chemo regimen on Monday and was hooked up to the bags for almost 8 hours. This was probably the longest day she has ever had for chemo and it was really tiring. The next four days were not as long. She only needed to be there for four hours. That's 20 hours of poisons being infused into her bloodstream and I expected the worst. (I say poisons because nurses and pharmacists need to wear protective gear and goggles when handling chemo drugs.)

I thought that she was going to be laid out and suffering starting on Tuesday. She felt really sick but she was able to tolerate it well enough to take the kids to the dentist with me and to walk around the house and do things. I was really happy but then Friday night came. 

One of the reasons that Dr. Reeder started her on the R-ESHAP protocol was because it contains a drug called Cytarabine. He has always been concerned about the brain tumor that Val had last year and wanted to make sure that the CNS (Central Nervous System) was treated. Cytarabine is one of the few chemo drugs that breaks the blood-brain barrier and he feels that it would do the trick. Well, it did in a big scary way. 

Cytarabine was the only drug that Valerie was going to get on Friday and it gave her 2 big side-effects. She felt as though her brain was on fire. Imagine a burning sensation inside your head and nothing could provide relief. She had to suffer through that and thank God that it only lasted one night. The other side-effect was night terrors and nightmares. As Valerie was trying to go to sleep she kept on waking up in a panic. She felt as though there were evil spirits that were tormenting her as she tried to go to sleep. I am praying that the next cycle of chemo is going to be the last one before her stem cell transplant. It would really suck if she had to suffer in this way again.

Her regular symptoms did continue today. This morning she was suffering with one of the worst bouts of nausea that she has aver had. She couldn't even move an inch without feeling like her stomach was twisting into knots and that she was going to hack. The nausea was really bad all day but this morning especially and we are hoping and praying that over the next few days, she will feel less and less sick. 

This week and next week she goes in on Thursdays for more Rituxan and then the 2nd and hopefully last cycle of chemo starts the week after that. That's two full weeks of recovery.

So that's this week in a nutshell. Once again thank you so much for all the support. We are so close to hitting on online goal. Please continue to share this site with all of your friends, neighbors, co-workers and anyone else that you think will be touched but Val's story.

Re-diagnosis. And ready, set, go!!!

Here is a blog post from Valerie. You can read her personal blog by clicking here.

Today I started my new chemo regimen after learning that I was misdiagnosed 3 years ago. It was a very successful day. I always manage to talk some dear friend of mine to give up many hours of their day to come sit at a Dr office with me, and today was no different. I'm glad I don't have to ever be alone.

What a blessing!

I'm not the kind of person that typically needs a lot of alone time. Some is nice, yes, but I feel happier and stronger when I am surrounded by people that I can interact with. A "social butterfly" type of a person? Yeah maybe. I just love interacting with others and, although, if given a choice, I'd pick a much more fun way to do it, this is my opportunity right now. Writing and knowing that even a few people read it makes me feel so good. It makes me feel stronger, because I know that people are rooting for me.

After a 6 hour appointment and an hour drive home, the effects of the treatment were starting to hit me. I could feel my legs shaking as I stood and I was getting these crazy hot flashes, mostly on my bald head, and I was feeling the start of my old friend...nausea.

Being home is much, much, much better than being hospitalized (uh, duh). It can be hard though, when all I do is say hi to my babies (ok, I know they aren't technically babies, but you mommy's get it, right?) and after a quick hug, Jess help get me upstairs into bed and I fall asleep for practically the rest of the night. I wake up, can't get out of bed yet, but I see them a few more times, then we say our family prayers and it is bedtime.

At least I get to hear them in the house. Playing, fighting, making messes, you know...just being kids! A mother's symphony.

This treatment is going to be hard and rigorous on my body. Five days a week of chemo, two weeks off, then repeat. Bleh.

All I can really think of right now is getting through this well...now that my diagnosis makes a bit more sense. I just feel so grateful that Dr Reeder was so persistent. Instead of looking at what I have been through and playing the game of "which things did I unnecessarily suffer through", I prefer to think about how much more I would've gone through with out these new findings. Years more of treatments that would be ineffective. I really dodged a bullet.

We always pray that my Dr can think with a clear mind and that he will be lead in the direction that our Heavenly father wants for us. Well, I personally fell like this is a answer to that prayer.

Gratitude, relief, and my good ol' stubborn determination are all I feel right now. I've been through too much to even think about giving up now!!!