Just roll with the punches

I've started this blog post several times since last week but couldn't find the right words to convey my state of mind and my feelings (go figure, when have I ever been at a loss for words). Lauren had day eight of her 28 day cycle on Monday. No allergic reaction, as she got pre-medicated with IV benadryl prior to the taxotere. I waited, with baited breath, to see if she would do as well with this cycle as she did with the last. Unfortunately on Wednesday (day 10) the mucositis kicked in and by Friday (day 12) the tips of her fingers hurt so bad she couldn't even open up a water bottle. The mucositis also causes extreme stomach cramping but luckily, with a little bit of Maalox, she feels better. She has already asked me twice "do we have to do another cycle?". I don't want to push her to do something she doesn't want to do, but also feel its in her best interest to at least complete six full cycles. Of course, playing the role of the Devil's Advocate is never really that much fun, but someone has to do it. And that someone is me.

Tuesday, we met with the Physiatrist to discuss the x-ray taken of Lauren's pelvis. Nothing noticeably causing her gate issues, so she thinks its muscle/tissue related (radiation complications) and said she could go ahead and start physical therapy. I am waiting on a referral from the clinic to be sent over to St. Mary's (where it was recommended that she see the outpatient PT). Oddly enough, this week Lauren has been able to walk a little better and there is feeling (tingly sensation) in her feet where before, they were 100% numb. Imagine trying to walk when you can't feel your feet. 

On Thursday, she had an appointment with the OBGYN for an ultrasound. This was primarily to image Lauren's female anatomy to make sure nothing had shifted during the 36 radiation treatments and to make sure the fibrosis isn't causing any blockage. Her ovaries have shut down, so we didn't anticipate there to be any fluid backup besides the fact that she would be writhing in pain if there was. What we didn't expect to find out is that her uterus has stopped growing. Right now, it is the size of a 12 year old's and the doc suggested that it will probably never get any bigger, thus unable to carry a child to full term. While we sat there listening and processing, I looked over to Lauren and I could tell she was holding in the tears. IF Lauren could have a child right now, she would. She has always been the mothering type and has always dreamed about getting married and having a big family. It comes naturally to her (she reminds me so much of my sister, who is the same way). We also spoke about starting the process of opening up the vaginal canal and trying to heal the fibrosis that will (in time) keep her from having a healthy intimate relationship. It is a long process and could take a few years to accomplish, so when asked, Lauren decided to start sooner rather than later. On the ride home, we talked about everything. My words to Lauren were this "We've always talked about this ("this" being the cancer) being larger, bigger than any of us can even comprehend, the effects it will have on all of us for many years to come. Maybe your calling in life is to adopt? Perhaps a child born to a teenage mom or even a child with special needs? But until you are older (I can't say more mature, because God knows this girl is mature and wise beyond her years) we won't really have a clear picture". She seemed okay with this, for now. Thank God for living in the moment.

It was beautiful weather on Saturday, so we decided to venture out and enjoy nature. First we drove downtown and enjoyed a small quaint Earth Day festival located next to the Truckee River. There was live music and it felt like we were in Berkeley amongst my favorite kinds of people. We sat next to the river on a blanket under the trees listening, laughing, taking pictures. It's the first time since Lauren started her treatment that we could actually get out and enjoy the weather. I guess that's what we get for moving to a place that has a real winter. Afterwards, we decided to drive up to Mt. Rose and instead of stopping at the top, we kept driving and found ourselves in Tahoe before we knew it. We pulled over next to the lake and got out and hiked down (yes, even Lauren hiked down with assistance from my arm =)). Tyler and his friend Matt went swimming in the lake (brave souls, this lake is freezing cold, even in the summer) and Lauren, Jim and I sat on a huge rock watching, laughing. We drove into Tahoe for dinner then made our way home as the sun started to set. It really was a great day. <3

 

Monday, April 16th, was my father's birthday. He would have been 62. I used to have a hard time even getting out of bed on this day, but with time, as with anything, it has become easier, tolerable. To say that I miss him every day is a definite understatement. I often try to muster up memories, but it always goes back to that fateful day in the car, when I got the call that he had passed away. This year's birthday will never be forgotten. Our family suffered a devastating loss as my sister Cheryl found out she had miscarried, a boy named Jacob Dylan. I hate being so far away from my family especially in times like this when all I can be is a telephone conversation. Cheryl, I love you and miss you beyond words. You will get through this, I promise. Now Daddy has a grandson he can hold and play with and spoil rotten and remember you will see him again one day. He will be waiting for you until then.

I feel like I got punched a few times in the gut this week, but I will not let it get me down. I grieve and process, and then I move on. You just have to roll with the punches.

peace and love
-cherri

Live with NO regrets

I am going to start this blog post out with some statistics ...

Each weekday:

46 children in the US will be diagnosed with cancer.

Seven of those children will not survive their disease.

80% of those children will have metastatic disease.

Sarcoma:

1 out of 3 patients diagnosed with sarcoma will not survive.

Only 20% of sarcoma patients will survive a relapse. 
At the time of Lauren's diagnosis, CHO had only treated 3 pediatric cases of Lauren's type of sarcoma. Ever. 

The first sarcoma parent I met was Crystal. She also works for the oncology department at Children's and I met her in "that" capacity. She brought over all the paperwork to sign when we decided to go with a clinical trial option in December 2009. Her daughter, Ariel, is a rhabdomyosarcoma survivor and had been out of treatment for a year or so when I met Crystal. To hear that Ariel was in remission gave us so much hope, where the stats rattled off that fateful day did nothing but deter it. While it was the first day and a lot of information was spouted off to us, she was there to answer questions and was also the one who told us about St. Baldrick's (she is the co-chair for the Oakland event). She still remains the only sarcoma mom I've met face to face. I haven't spoken to her since Lauren has been out of treatment and I saw a post come up from a Facebook group I belong to asking for prayers for Ariel. I knew she had relapsed right around the same time as Lauren was finishing up her treatment at CHO but I just never reconnected with her. To make a long and very painful story short, I am asking that all of you who care so deeply for Lauren, also send prayers (or whatever you feel you can do to send good vibes to this family) up for Crystal, Ariel, Elora (Ariel's twin sister) and the rest of their family. Ariel is battling relapse number three not to mention this week their water heater caught on fire and now they have no where to live while the repairs are made. Here is a link to her CaringBridge journal if you would also like to leave words of encouragement. My heart is heavy this week and I pray that they find that miracle they have been looking for. 


Lauren had day one of her chemo cycle (gemcitabine) on Monday. Tuesday we went swimming at the gym and later that day her and Tyler went to the park for some basketball (she shoots from the wheelchair pretty well =)). On Wednesday, the effects kicked in and on top of the low grade fever, she literally felt like she had the flu (body aches, chills, etc). Luckily, like clockwork, she woke up on Thursday feeling 100% better. Aside from Lauren's last cycle, where she miraculously felt great after the combo day, I can normally predict when she is going to feel crummy. She is pretty consistent. LOL. Aside from a swollen ankle (guessing and HOPING that it is from her hitting her ankle on the metal part of the wheelchair where the wheel is and bruising the bone) that is bruised pretty bad, she is doing really well. Luckily her platelets aren't emergent low so unless it gets worse, I am not going to worry. 


This week is going to be one of those weeks for why I quit my job. On Monday, Lauren has her chemo appointment at 10am (since its both drugs (gemcitabine and taxotere) we'll most likely be at the clinic all day) and I am truly hoping that giving her benadryl BEFORE the taxotere will alleviate any allergic reaction issues. On Tuesday, we are back to Carson City to see the Physiatrist. Now that we have the x-ray done, I am hopeful that we can figure out what is going on with Lauren's hip. Since there is nothing we can do about the neuropathy right now while she is still on chemo, we'll start with the hips, which were bothering her before the neuropathy made it impossible for her to walk without assistance. Thursday we are back at the Gynecologist for an ultrasound to see what is going on with the fibrosis and to get a picture of Lauren's female organs and where they are, literally. With the surgery and radiation, "stuff" could have shifted. The primary concern is to make sure that there is no blockage where Lauren to have any kind of cycle. If the opening is closed up, then we will need to make a plan soon to fix this. There has been talk of issues with healing, considering everything down there has been radiated. Radiated tissue may not be able to heal properly. To help with this, we have also discussed the use of a hyperbaric oxygen therapy.


I have a call with her ND towards the end of April, and I am anxious to see what kind of treatment plans he is going to come up with. We had discussed some stuff before deciding to use conventional treatment with this relapse, all NON-toxic, so I am excited to get this started soon after she finishes with her current protocol. While I have written before that this cycle was Lauren's last, she has decided that she wants at least one more cycle before we re-image, so that will mean a PET CT towards the end of May. As much as I'd like to think that I am in charge, I really try to let Lauren make a lot of these decisions. She is almost 15 and out of all the things in her life that she has no more control over, I want her to feel like she has control over her treatment plans. It IS her life. 


I leave you with a picture of Lauren (and her friend Poley - the IV pole, but you have to say it like your are a New Yorker (Pauly)) that I took while she was getting her infusion on Monday. She looks like a ROCKSTAR! Who am I kidding, she IS a ROCKSTAR!

Also, I wanted to add a link to a video she and I made "A day in the life of a chemo patient". It's pretty funny and includes some of our favorite onc nurses <3


Remember y'all, hug your family and friends a little tighter tonight. Cherish every single moment. Live for today, for tomorrow may never come. None of us knows how long we have here, so make every moment count and live with NO regrets.


peace and <3
-cherri

Never look a gift horse in the mouth.

Lauren and I are still recuperating from our trip to OMG2012. Our suitcase is still half-packed but has made the move from living room to my bedroom. Lauren's counts have recovered (platelets = 150 (yeah!!) ANC = 1.4) and is due for her last cycle this Monday. Once this cycle is over then she will go in for another scan and she will start her alternative therapy soon after.

I have been going through all the media from the summit and have to say it is overwhelming. I wish we would have known (or been informed) about fertility and precautions we could have taken. The crummy party is that some things can be fixed, others cannot. It really makes me angry. I try to think on the bright side, hey she is alive right? But it falls under the quality of life category. She is so resilient right now and tries to put on a smile most of the time. None of us can tell the future, much less some doctors who like to quote statistics. Well, Lauren isn't a statistic and she will prevail! If you are concerned about fertility, check out FertileHope. They will be your "go-to" for all resources pertaining to cancer treatments and fertility.

One exhibitor I was surprised to see was Annie Appleseed Project. Over the course of the last two years, when I would speak to people about Lauren's alternative/holistic treatment plan, most would smile and actually be amazed, but somewhere inside them I know they were thinking "this chick is crazy". We've asked Lauren to do some pretty crazy things that aren't normal in conventional therapy, and I know that what was asked of her may have been a little over the top, but it did put her into a six month remission. It was refreshing to have an exhibitor that I could speak to about some of the therapies that Lauren has been doing and not get that "uh huh, sure" look. Annie knew about most of the things that I brought up. I was amazed! Even better, they will be having a conference in SF this coming fall called "Evidence-based Complementary and Alternative Cancer Therapies" and Lauren and I will be attending that for sure. I am always excited and more than happy to discuss what we have done to change our lifestyle, including simple nutrition (yes, that means no McDonald's), plus some of the stuff that our nation (USA) looks at as NON-FDA approved yet other countries use it on a regular basis.

The closing speech, by Wendell Potter, was not much of a surprise to me, but still made me extremely angry. One of his slides showed that 700,000 people in the US file for bankruptcy annually due to medical debt. Every day I think, we are about to be one of these 700k. He discussed how the lack of medical coverage for some will mean death. As someone who has had to deal with the ugly side of insurance, the more he talked, the angrier I got. He made me want to move to DC and become a lobbyist for the cause! I've always had problems with the government and politicians in general (it's why I moved to CALI!!!). I often worry about Lauren's future where medical coverage is concerned. I know what it is like to have to make sure you have constant coverage because of this little thing called "a pre-existing condition". I am a Type 1 diabetic. Unfortunately, until this healthcare reform bullshit is fixed, I will always worry.

Needless to say, not only did Lauren and I feel a sense of camaraderie with the other attendees at the summit, we (or at least I) came back also feeling a sense of empowerment that we, someday, will change the world and the way we advocate for such things as cancer, healthcare, relationships, etc. and we cannot wait until next year OMG2013 BABY!

It's going to be a lazy weekend for sure. I am going to do a little housekeeping, relax with my family and go OUT for Easter brunch tomorrow. Be sure to hug your babies, your friends, your family a little tighter than before. Be thankful for each healthy day you have. Live life each day. GET BUSY LIVING!

peace and love
-cherri

OMG2012 or bust?

What better topic for my inaugural post on my new blog, than the OMG2012 Cancer Summit for Young Adults? I started following Matthew Zachary (founder) on twitter in 2010 shortly after Lauren was diagnosed. He was posting as @stupidcancer then (still does) and I loved that his organization was geared more towards teens and young adults and wasn't "cancer type" specific. They tend to post more about lifestyle and what to do now that you have cancer or are in remission and dealing with LIFE. Lauren falls into a tough category as she is no longer pediatric, although still being treated on peds protocol and at a pediatric clinic/hospital. I found that they appealed to both me and Lauren, respectively =) as we kind of fit the age range of 15 - 40. I was bummed when I found out that they normally held their annual summit in NYC and knew that most likely, Lauren and I would never attend. Fast forward early 2011 and to my excitement, Matt posted on Facebook that OMG2012 was going to be in Las Vegas! OMG!!! At that time, we were still living in SF and I decided then and there that come hell or high water, Lauren and I would be going to Vegas! (Little did I know that soon after the announcement of the venue, we would actually be moving to Nevada, albeit Reno)

I think a huge hurdle to overcome in the cancerverse is the feeling of being alone. But for one long weekend, over 550 cancer survivors, their caregivers and friends and advocates alike come together to make sure you never have that feeling of being alone. The opening ceremonies, videos of the OMG2012 Road Trip (sponsored by Volkswagen) on the screen with what now will forever be our theme song, We Are Young, by Fun., brought tears to my eyes. I felt like these people were advocating for Lauren, personally. In fact, just writing those words makes me tear up. They have more passion about the cause than anyone I have ever seen! And what makes it even better is they are YOUNG and COOL! My kind of people =) We met so many people that can comprehend what life with cancer is all about, not to mention survivors and I mean, LONG TERM, 10+ years survivors. This in itself will continue to inspire Lauren to fight and never give up hope that some day, she will be living a life without cancer. Unfortunately, the downside are the long term affects that so many are dealing with that she too will most likely have to deal with as well. But the silver lining, they are all getting busy living, with or without side affects and again, this is an inspiration to us because if they are doing it, so can we!

So to end this inaugural post, here is Lauren, and some friends ... Needless to say, I haven't seen her smile this big in a very long time (and we all know what a happy beautiful girl Lauren is =))

And with that, all I have to say is "What happens in Vegas, stays in Vegas" ... 

Be sure to subscribe and share my new blog as I will not be using caringbridge any longer.

peace and love

-cherri