Phight to Inspire

Scott here. I will do my best to write this update. I feel like I need to finish this blog for her. Drea fought like I have never seen anyone fight before. March 13, 2017 around 6:30pm she can now rest and breath again.

I will try to carry on the update from her last update of Day 6 in the hospital.

Shortly after her last update, her blood work came back showing that her carbon dioxide (co2) was very high. This started our long month and a half on the ICU floor at UW Medical Center. The teams were chasing what they were calling a Cryptogenic Organized Pneumonia (COP). Sparing the great details, this had her going from Bipap, to breathing tube, to kidney dialysis, off breathing tube, emergency blood transfusions, chest compressions were needed at one time, back on breathing tube for a short while, then off again. Like I said previously, she is a fighter like no other. We had one final test that would give us the answer we did not want. Through a right and left heart Cath they found that her heart was restrictive meaning it was not strong enough to pump the necessary fluids to her organs, so her body held on to this water. Yes, her lungs were still assholes, but her heart was quietly being the ring leading asshole that was starving her lungs of the blood they needed to help her breath. One of the only ways to treat a restrictive heart is with a transplant. We are not able to do transplants for the same reasons we could not do lung transplants.

We were walking this medical tight rope. Trying to keep her from retaining too much fluid that was making it difficult to breath, and not making her too dry to where the kidneys would fight back. At this point, the doctors and myself nervously agreed to her wishes of coming home and try to manage these symptoms and get her comfortable. I can not thank the UW teams enough for everything they have done for us. She got the greatest care from everyone. She infectiously made friends with the staff there, as her favorite nurse told me last night “I only knew her for a short time, but I can’t imagine a World without her”.

It was great to see her happy to be home with family, especially being home with Evan for the last week and a half. In her final moments, she made sure to give me and Evan both hugs and let us know that she loves us.

Thank you all for the support that you have shown us through this very tough, very stressful time. Even if she did not respond to a lot of people, she did in fact read every word and smiled. I have made promises to her. Number one is that Evan will always be taken care of forever. And number two, that I want her name to be synonymous with “Inspire” She was a fighter from childhood, she over came so many obstacles. Her family was told she was not going to survive her cancer when she was a child, she showed them that she was going to survive 38 extra happy, successful years and raise an amazing child while doing so. I mentioned it in the last blog I wrote for her, but take her name and literally run with it. She was limited to what she could do with her body. If you ever had personal goals you have wanted to achieve, take her name. She lived her whole life helping people and I want that to continue forever.

I love you Drea, and I will continue your phight. Breath easy love.

Day 6 UW

It’s day six and I guess I should update. The last couple days have been really rough. My body was given a diuretic holiday, which meant no diuretics for the past two days. This is meant to let make my kidneys recover and get my blood pressure back to a better range so as not to further aggravate my kidneys. I was also given some IV fluids that helped make my kidneys happy again. Well all that sounds really great and everything, but it also made breathing quite a bit more difficult. I’m so extremely short of breath, that turning to my side in bed nearly felt like I was running a marathon. So the past two days I have been using some lorazapam to keep me calm and not feel so much air hunger. I apologize to all of try to call text or visit. I hope you can understand that things sometimes need to take priority with my health and also my stubborn nature refuses to let a lot of people see me like this. I feel very vulnerable right now needing so much help to do things, but I know this is only temporary. I’ve got a good support system here in Seattle as well as having Scott here, his step mom Lori, brother Travis sister-in-law Karly and a very very dear friend who knows what I’m going through, Rebecca (Spokane) is here with me as well. I also have up really good friends here like my sister from another mister, Rebecca (Seattle), who would be here any moment if I needed her and so many other friends I truly am blessed!!

Thursday’s CAT scan showed that I have some “clouding” in my lungs that were not present from my last scan 2 years ago. The team here is ruling out an infection, so they are able to start me on a steroid that will hopefully knock down this inflammation, which could help the breathing, which in turn would let my heart not have to work so hard.  This may help with the fluid retention, then make my kidneys happy (right?). Today is steroid day #1, we probably won’t see any signs for a few days, so I will still be here for a bit. 

Keep reading, calling, texting, sending love and prayers!!   We appreciate you all more than you know! 

Love, Drea and Scott 

https://www.gofundme.com/4gzbpkhc

UW day 2.

Bronchoscopy and nuclear med study to look at my parathyroid today. Keep sending that juju! We will update you all later! Hugs to all, you’ve made me feel so loved! 

Day 1 UW Medical Center

Met with the medical team this morning. Labs have shown that my parathyroid is still high, so I will be seeing an Endocrinologist to further evaluate.  A Cat Scan of my lungs was done last night which showed some infiltrates, definite changes that were not present in a previous CT from 2015.  It could be pneumonia but because I don’t have the usual symptoms of pneumonia like, fever, chills, cough, etc, they are unsure.  Pulmonary docs should be by soon and they are discussing doing a bronchoscopy today.  That is where they put a camera down my throat to see what’s in there and take brushing/biopsies to test for infection.  

I saw my pulmonary hypertension specialist as well, who is planning to do a heart cath tomorrow to get an accurate measure of what my pulmonary pressures are.  

Things are moving along, I am glad that I made the decision to come here. I have a team of physicians trying to figure me out.  I’m an enigma, a puzzle at this point due to my complicated medical history.  I have faith they will get the pieces in place  and I will be back to kicking ass!  

Scott and I appreciate everyone’s thoughts, prayers, and love from all of you amazing friends and family!  The donations to my GoFundMe have been a huge help this trip!

Peace and love, Drea
https://www.gofundme.com/4gzbpkhc

http://www.m.webmd.com/a-to-z-guides/bronchoscopy-16978

Post hospital update

At this point, there are too many things going on medically with me and I am not about to write a medical dictionary to include to this post. I ain’t got time for that! I guess the main thing is  that my lungs are getting worse which causes my heart to work harder to pump blood through my body. Which leads to fluid retention in my abdomen that forces the other organs upwards.  Right now I can feel my liver right up against my rib cage. I have been taking care of this for the past year using heavy duty diuretics to help get the water off. However when you do that,  you’re also putting strain on other parts of her body so my kidneys started to fight back and all the other cells and what not in there or fighting trying to figure out where to go and what to do and it’s like they have a referee in there but nobody knows where to start first who’s going to win this battle. All of this leaves me extremely exhausted and short of breath doing minimal activities. I’m very weak and very very short of breath even changing my clothes are taking off my socks. I was glad my mom is here because I need help getting dressed after I shower due to pure exhaustion.

You can imagine how frustrating this is for me as well as others around you see the struggle. I need to see a endocrinologist ASAP  because something is out of whack with my parathyroid. Spokane doesn’t have an Endochrinologist available that would be able to see me without being on a long 3 to 6 month wait list. So I am  most likely going to be going to Seattle to see my pulmonary hypertension specialist at the University of Washington and see about transferring my care there for the time being.   I think that would be the quickest way to get things resolved and to be able to see the specialists in a timely manner and that will give me and my family peace of mind.  My main motivation to do this right now is because we have a family vacation planned to go to Kauai in March! I am not going to miss that trip! So they are going to do everything they can to fix me before my flight leaves March 1st!

I appreciate all your words of encouragement and prayers and the love you all have showed me this past year. I enjoy knowing that you read my thoughts and often times  help me remember that I am strong. Life is rough, it can be a difficult bitch that can break you but only if you let it!

As I sign off, I realize maybe this is not a very coherent blog.  But it’s real and it’s raw so I’m not going to edit it.

I feel like Dorothy in the Wizard of Oz  off on an adventure to find the wizard. The wonderful Wizard of Oz who is going to help them all. I just need to find my wizard!  A pair of some ruby red heels wouldn’t be bad either!  

https://www.gofundme.com/4gzbpkhc?u=12367756

If I can keep going, so can you. Persistence and stubbornness helps too.

So it’s a new year right? I’m not gonna talk about that or resolutions I have no intention of keeping.  My only goal is one I have had my whole life and that is to KEEP GOING even if my body isn’t cooperating.  

I’ve known a life of illness and struggle due to side effects to cure the rare cancer I had as a childhood Neuroblastoma.  But because of those treatments I have been fortunate to have these years to live, have a loving and supportive family, amazing friends, the best sister I could ask for,  a phenomenal husband and a son who I can give my whole heart to, who I will do anything for no matter what.

If anyone knows struggle it’s my own mother.  She has had to be strong for me my whole life, sometimes that meant sacrificing her own happiness.  Watching your child going through horrid treatments with the hope they will get better is unimaginable to me.  Yet, she was there. She always has been by my side, making tough decisions so that I can have a better life and see that what I went through better mean something.  I wish I would have seen this when I was younger and we had our own issues. But that is what maturity does to you, eventually being able to see that the world does not revolve around you.

As I write this, my mom is again here by my side.  She moved in with us in December to help us, to help me  and most importantly be here for both my sister and her grandson.  She has made my home complete and made my life so much easier so that I can rest and not overdo myself.  I’m not gonna lie, I feel pretty spoiled right now.  

Which brings me to this week.  I have been struggling the past couple weeks, more shortness of breath and becoming exhausted easily.  I think the cold and very dry air is making my PH/CHF symptoms worse.  I’ve basically been a shut in except for very short outings. Today I was sitting at home bindge-watching Luke Cage with my mom, (seriously it’s a great series) when flowers were delivered.  I had no idea who they could have been from. Well, they were from her!  What? She takes care everything around the house I need, including making meals when I can’t and yet she took the time to send me flowers because I haven’t been feeling well! 

So will I keep going, you better damn well believe I will.  Always forward! 

https://www.cancer.gov/types/neuroblastoma/patient/neuroblastoma-treatment-pdq

Shitting Monochromatic Rainbows

I won’t lie, these past few months have been rough. I haven’t blogged in a while mainly because I didn’t know what to write. I felt as though I was falling apart little by little.  Lots of events have taken place, some not too pleasant and some joyful.  I lost a friend to complications with her Pulmonary hypertension/CHF and that hit me hard.  We weren’t super close but had bonded over our shared illness.  Her death also made everything  REAL.  Yes, death is real and life is shorter than imaginable.  Her husband sent me a late night text on Oct 12th to tell me she was gone.  It was exactly a month from when Kat had lunch with Scott and I.  Kat was hilarious and always had a huge smile on her face and I will miss her corny jokes.

I have spent the last few months dealing with a multitude of emotions.  I started having anxiety attacks and haven’t wanted to do anything.  I would break down over the realization that I have changed and mourn who i “used to be”.  I’ve lost a lot of weight having to get rid of excess fluid that my heart cannot pump out.  Yet struggling to gain “good weight” and lean muscle mass.  I started losing my hair and trying to deal with a bald spot on the back of my head. I have little energy to do anything I used to do and cannot hang out with friends and go to all their functions like I could before.  I feel like everyone is judging me, think that I am faking my illness and just don’t want to be around them.  Meanwhile, I sat around secretly angry that people who tell me they are there for me or will help, don’t follow through. They don’t come see me like they say they will.  Only trying to realize that it is more that they don’t know how to deal with this new version of me.  They probably don’t know what to say or what to do.  It’s true I have a hard time answering the question “how are you feeling”.  Most people don’t want to hear that I am actually feeling horrible, they want to hear “I am good” and be on their way.  Trips back and forth to UW to see the specialist are uneventful. Still retaining too much fluid around my heart and monitoring my symptoms.

I began down this road where I felt like everything sucked. I had to realize that I was depressed.  Who wouldn’t be with all this going on?  But I had to have someone outside of my circle to talk me into taking an antidepressant.  Depression runs in my family but I have never suffered from it.  I always felt immune to it and have been happy and focused on the present moment while shitting rainbows.  Well my, rainbows started to turn monochromatic.  I couldn’t have that and glad that I had finally admitted my anxiety and depression was hindering me.

I have been on an antidepressant for almost two months and I am starting to feel more like myself.  I have also been focusing on my cardiac rehab and trying to gain endurance.  I have also had a huge change in my home that has helped tremendously!  I am happy to say that my Mom came to live with us the beginning of this month!  She  has been so helpful to us (to me) I couldn’t thank her enough.  I had to realize that I just cannot do things around the house I used to and she has taken that pressure off.  I am beyond lucky to have her.  She also brought the cutest Shih Tzu  puppy with her!  His name is Oscar and he is around 12 weeks old!  He is so happy and makes my heart happy.  My brother and Buster moved out and I miss them (especially Buster) who I spent everyday with for the past couple years.  I still feel that absence and hope he comes to visit.  AND my beautiful sister moved back in while she is focusing on school!  Yes my home is full and busy and I LOVE every minute of it!

I just want to say thank you for all the support I have received sharing my life with you.  I appreciate the prayers and thoughts! If you have any questions or a comment feel free!  Please share.  Also check out my gofundme page,  thank you in advance or for donating, the funds have been very helpful with my travels for care.  HAPPY HOLIDAYS EVERYONE!

https://www.gofundme.com/4gzbpkhc
 

 

Liquid steak day!

A quick little post to let you all know a blog will be coming soon.  I know it’s been a while, but a lot has happened and I’m not even sure where to start!  

For today though, I get my iron infusion and that always makes me feel better!  I also have my awesome Mama with me today!  It’s so nice to have company for this otherwise it gets boring!  

Keep your eyes peeled for new blog soon! Sending love and good juju!  

Survived, Not Survivor.

As we draw an end to September, Childhood Cancer Awareness month, I would like you to read a raw and candid account by a friend who had a brain tumor. It is my honor to host Thalon Riordan on my blog. As you read, you may have some thoughts/observations. We would love to hear them. Please share for continued awareness in hopes for a cure and/or less toxic treatments for children who have cancer.
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Ah, September. As a kid it was a month of a new school year (the real New Year for me, with far more realistic goals), a fresh start, and after a summer of intermittent boredom and wishing it would never end, something to finally do. As an adult, starting my final year of college for my BA, it still is.

Except, the September of 2004, the first September after I was diagnosed with a brain tumor, it became something else. It became Childhood Cancer Awareness month. August 20, 2006, it became something else too. That was the day that I lost the very first person in my life. The very first experience I’d ever had with death. And he was a little boy, not quite a year younger than me, also with brain cancer. His name was Zachary Camarda. He was the first cancer friend I had ever made. I met him my first day of treatment. And because he was there for so many of those days, he fell into that black hole of trauma, the one that blocks the memories to block the pain, so, for so long all I could remember, was August 20, his name, and the anguish I felt the day he died. September was Remembrance Month for me as well.

December 30, 2006, Amanda Bunch died too. She wasn’t always in the play room with me like Zach was, so I wasn’t as close to her. She also had been in remission at one point, and the biggest kicker is that she died at 17. She was someone I aspired to be. If she could survive, so could I, right? I remember going to an ACCOIN parade, at the time called Candlelighters,and she gave me a sign (That she had been carrying for herself) that said “Survivor”. I told her, “I can’t take this, I’m not a survivor yet.” She said, “You’ve always been a survivor. Now take it.” I’m still not convinced that I didn’t somehow take her survival away from her too.

I was diagnosed with a Brain Tumor November 28, 2003. The day after Thanksgiving. December 1, I was taken in for a “debulking” surgery for the tumor. They took out 80%. The remaining 20% is 2.2cm by 2.2cm, if my most recent MRI results are anything to go by.

Now I’m 21, married, in my last year of my Bachelor’s, and on track to get my Master’s. I’m also a Childhood Cancer Survivor. And I have PTSD. “Have you grieved yet? For Zach, for Amanda, for your lost childhood?” My therapist asked me that in my last session. The answer is probably no. I don’t know how to. And after nearly 2/3 of my life being this, I don’t know if I want to. I’m ripping open a wound that’s been festering for 13 years. Poking at it, digging it out. It’s so deep I have to wonder if there is a chance it’ll ever heal.

One thing is certain though. I hate being called a survivor. Like everything is past tense. Like I did such a great job managing to not die during chemo, so “hey! Here’s your Purple Heart, your Gold Ribbon, your Survivor Beads! Thank you have a nice day bye now…”. I hated being called everyone’s hero. I hate that being a survivor is romanticized and put in books and movies as some heart wrenching plot line. I hate that people think Survivor seems to synonymous with Over. But that is so, so, so very wrong. The chemo was the easy part to be honest. I laid there. I slept when I needed to. Played when I wanted to. Didn’t worry or care about anything except tomorrow.

The surviving is happening now. In learning to adult, and I don’t mean get regular checkups and pay your bills, I mean get regularly checked for the cancer that may or may not ever show up again. I mean doing the phone calls to have pediatric records sent to the adult oncologist because suddenly that’s your responsibility not the hospital’s. I mean figuring out how to manage your panic attacks for those appointments because your husband can’t take the time off, and pretty soon, your dad can’t either.

And my God how I feel so ridiculous now. I have panic attacks and can’t talk about these things except to someone who’s paid to understand, in a small room and non-judgmental walls. One Survivor friend was diagnosed with cancer again. Two have actual diseases caused by their treatments. And I have PTSD.

“Oh Thalon, don’t be so hard on yourself! You have other things going on too!” Well, yea. Muscle weakness, almost no fine motor control in my left hand, scoliosis, chronic pain, fatigue, and migraines… But my lungs aren’t killing me. My heart isn’t failing me. My body isn’t attacking itself.

And that’s where it is. The end-all-be-all of this Survivor nonsense. The guilt. The wondering why the hell I made it. The honest-to-God belief that Zach or Amanda could, and would be doing so much more, so much better things with the lives they never got to live. Wondering if I’m doing them proud and living to the fullest, just like I promised them I would. Wanting to get closer to Rebecca and Drea, Sammy, and so many other survivors but being terrified of losing them too.

Being a Survivor isn’t beautiful. It’s not romantic. It’s not heroic. And most of all, it’s not all that I am. I’m a wife. An aunt. A best friend. A sister. A strong, powerful force of a woman. And I also just happened to have survived cancer.
-Thalon Riordan

Childhood Cancer/late effects

Just three fighters who all had cancer as children.

Sept is Childhood cancer awareness month. It’s a time to honor those children and their families who have been through this dreadful disease and those who did not. It’s also a time to bring awareness that children die every day of cancer and yet only 4% of proceeds earned through fund raising efforts go towards childhood cancer research. 
http://www.icareicure.org/get-informed/childhood-cancer-facts/

This month I was asked to light the Survivor candle during the American Childhood Cancer Organization of the Inland NW’s (ACCOIN) Candle Light Vigil. I was honored to be able to be given this opportunity. A lot of feelings come up for me when attending events for ACCOIN, especially this event. Too many feelings to name but some were, survivors guilt, sadness, fear, anxiety and hope, anger and gratitude.  

The one feeling I’ve struggled the most with throughout my life is survivors guilt.  A ton of questions come up from the guilt.  Why did I survive when many do not. Do I have a special purpose in life and am I living it? Should I have tried harder to live, work, become a better person? Am I trying now? Am I too lazy? I do not want answers to these inner questions nor am I fishing for compliments. They are just random things that go through my head. 

I’ve learned to combat my guilt with gratitude. I know I have lived my life to it’s fullest every day, or try to. It’s something that I am having a harder time doing now because I’m slower and get worn out quickly. But on my good days there is no stopping me! I know I’m so lucky to be here that I so I try to live a life of kindness, openness (even though I can be shy and have resting bitch face), be of service to others and compassion. I have the best support system that there is. My family is amazing and I am no short of friends that I know would do anything for me. Most of all, I know I helped bring the most amazing person into this world. I was always told that I would never be able to have children. Well, I did, and he will be 14 yrs old in a few months. He is an old soul and sometimes I feel he is here to help me just as must as I am here to help him. He is kind, funny, sarcastic (like his mama), has a huge heart for dogs and animals and so very smart! I’m so lucky to have him! 
I’ve also been blessed with having the most amazing husband. He is the most kind and giving person I’ve ever known. Seriously, everyone knows Scott does not get mad! We’ve never fought in the 12 years we’ve been together. I know, you don’t believe me but it’s true. Our relationship is easy. It’s crazy how easy it is, even during some of the hardest times in our lives. He is by my side through all my days good and bad. And no matter what health crisis comes up he doesn’t think of quitting. He holds my hand when  I feel weak and want to give up, only providing me with hope that we will get through whatever life throws at us. So how could I not want to continue on! 

A child who has gone through cancer, no matter how severe the treatment, is not ever fully “cured”. We suffer psychological wounds, lasting physical problems due to the treatments used and our family and friends suffer along side of us. Our parents have PTSD from having to watch their child get these brutal treatments, where some make it and many do not. We should be spending more time researching for a cure to end childhood cancer and for better treatments period. I, and many others can tell you that the treatments used to “cure” me are now trying to kill me. A fellow “survivor” (I don’t like that term but it’s late and I am lacking a better one) posted this article recently. 
https://www.hsph.harvard.edu/news/press-releases/child-cancer-survivors-views-on-health/?utm_source=Facebook&utm_medium=Social&utm_campaign=Chan-Facebook-General

I know some people were hoping for an update on my health crap, but I can’t form those words now, I’m tired. Just know I’m doing ok, I have good days and bad days. Focusing on the good ones and living my life with gratitude.  Please share if you would be so kind. Thank you for reading! Is like to hear your thought, comments, etc! 

 https://www.gofundme.com/4gzbpkhc?ssid=745310201&pos=1