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! 

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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!  img_0611

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

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! 

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Breathers guilt

This blog is written my husband Scott. It’s his point of view of all we are going through with my health issues. I cannot imagine my life without him and his insanely positive attitude that helps get me through all of it! 

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Click Whirrrrrr thump boosssshh, click whirrrrrrrr…. This is the new white noise that I sleep, and wake up to. Am I annoyed by it? Not at all, it’s kinda calming. Do I wish it wasn’t here? Of course I do. As I lay in bed tonight, Drea is staying another night in the hospital. So the white noise of her oxygen machine in our room is silent again. I feel like I should switch it on to fool myself that she’s home.  
The night the oxygen concentrator was delivered was a heavy day, making me realize shit was about to get real. Drea was still trying to process the doctors orders of 24 hour oxygen as Apria was installing my new slumber playlist. The gentleman showed me how to run everything so I could show Drea as soon as she was able to come to grips with her new rubber mustache. 

Our lives have definitely shifted a lot since the O2 had been introduced. The hospital visits, the doctors appointments (here and Seattle, and San Diego), the low sodium diets, the bad days vs. the good days. I’d be lying if I said it’s been easy. It does get tough, but as you have read in her blogs, She’s a god damn tough one, and that helps me out tremendously. A great example of her character, and who she really is, I would come home from work almost daily and she would be sitting in the living completely wiped out cause she saved up her energy and spent it on having dinner ready for us when I got home. Having a 13 year old that is wise beyond his years with a heart of gold is also a key part in our fight. If Drea would ask him to wait on her, hand and foot, all day, he would not hesitate. Evan really is a great kid.

I am deeply saddened for everything that Drea has been going through. And I do feel bad when I’m out doing strenuous activities where lung power is needed. But I realized that I have to do these activities because I can, because I know she would be right there next to me running the dogs in the morning, going on hikes like we used to, and bike rides, if she could. I do get upset when I see someone smoking, or just seeing someone that has left themselves go. Don’t waste what you got!

So if you keep telling yourself that you are going to start exercising, go! Take the stairs, break a sweat at least once a day, take your dogs out daily, cause I know Drea would.  

I’ve had people ask me what they could do for Drea.  I’ve thought about it and it comes down to this; get inspired to go for a hike/walk/run. If she can’t get her asshole lungs better, then at least she can be part of someone else’s lungs. I know she has inspired me to not take for granted what I have. 

I will write again sometime soon, it’s late, I got a lot of work tomorrow. Love you Drea, I love all you that have followed, who have reached out, who have donated ( https://www.gofundme.com/4gzbpkhc seriously this has been a tremendous help ) and who have helped with everything! Thank you all. Good night for now… 

Click Whirrrrrr thump boosssshh, click whirrrrrrrr…. 

It’s not a burrito baby!


Taking some time for myself in the hospital. Guess it takes locking me up here to make sure I rest and relax!  I’m calling it a spa day.  I’ve got a room to myself (with a view),  food is delivered 3X a day and if I play it up enough, maybe I’ll get a hot nurse to sponge bathe me!! 

But seriously, I’ve been feeling bad the past couple months.  I am anemic again so have had a two iron infusions so far.  I’m getting B12 shots, eating low sodium and even making juice!  However, nothing was really helping.  With PH and CHF, people tend to retain fluid in their ankles, feet or abdomen.  Lucky me, I retain it all in my stomach, so I look like I’m about 4-5 months pregnant!  Not cute, especially because it’s not even a burrito baby!  Why can’t I retain that fluid in my butt? I’d have a nice round one for sure!  So when my oral diuretics weren’t working, I made sure to let my cardiologist team know.  I went in today and they said they’d better admit me to the hospital for a couple days to use IV diuretics and get this handled! Having all this fluid there pushes against my organs and puts fluid in my lungs making it hard to breathe, eat and sleep.  So here I am, at the spa, watching the olympics and awaiting my hot tea before I drift off to an uninterrupted sleep.  Hahahaha…I crack myself up sometimes!  

Please send your jokes, good vibes, etc! I’ll still be #kickingphintheballs! Love y’all! 

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Pity parties happen.

So I cried tonight in front of my son, his friend and husband. Had a rough day of not feeling well. We were talking about ten years ago. Ten years ago I didn’t have pulmonary hypertension. I wasn’t on oxygen. I could do things, active things! Today, I couldn’t put my own socks on without struggling to breathe.  
Pity party for four please with me as the guest of dishonor.  I hate that. I don’t like for others to see the side of me in pain, struggling and feeling sorry for myself. I especially don’t like for my son to see it. He hugged me and I know he worries about me and that makes me sad.  It is too much for a kid to worry about.   This just sucks sometimes.

Liquid filet mignon for lunch on the menu today. 


It always makes me feel a little weird when I go to my doctor and I am the one asking for specific tests and for exactly what I need.  But after living in this body for 39 yrs and dealing with it’s “issues”, I’m starting to get the hang of it.  For the past few weeks I have been more tired than usual. I’ve been more short of breath and my heart started to feel like it was working over time. At first I just attributed it to the traveling I was doing. Maybe I over did myself, ate too many tacos or putting my body through hell in higher altitudes from my trip to NM.  But after nearly two weeks of being home and not getting better, it hit me…maybe I’m low on iron again!  So yesterday I went in to see my doc and asked her to run some labs.  More specifically, I wanted to check my ferritin level.  Normal is between 12-150.  Mine was 34.  Yes, I know, that is within the normal range.  However, when you also account for my other health issues, pulmonary htn and HF, that’s pretty low!  My heart has a hard time pumping 02 as it is, and My UW doc wants my ferritin to be around 100.  So here I sit this afternoon, getting an iron infusion.  I pat myself on the back today, for being my own advocate.  I am also grateful I have a Dr who listens to me and trusts me as well.  We have to speak up for ourselves as patients.  If you feel something is wrong you need to listen to what your body is saying! If you feel your Dr isn’t listening, get a second opinion! 

Just Breathe? Easier Said Than Done.

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Double Rainbow in beautiful Albuquerque!
I am back from NM where I spent two weeks with family.  I had a great time visiting family but sorry I wasn’t able to see some.  As expected, the higher elevation there kicked my ass.  My body felt heavier, I retained more water which made it look like I was pregnant, I felt like I was walking under water, slower and weighted down.  Normally it feels like I am breathing through a regular straw, but that straw turned into one of those skinny bar straws with the thinner air.  My oxygen saturation would drop into the low 70’s if I took off my 02 for any reason.  My heart raced and I had more palpitations.  I was exhausted from my body trying to work so hard to get oxygen!  Much of the vacation was spent sitting and chatting with people and resting as much as I could. It was nice spending quality time with everyone like watching the birds with my Grandpa, doing a puzzle with my Mom, visiting with my dad and step mom, and eating all the yummy green chile that I could!

 

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My AMAZING support system! LOVE them so much! At UCSD for Lung transplant clinic.
While I was gone, I did receive the final word from UCSD regarding lung transplant.  The specialists there turned me down.  They felt my case was too complicated and that a lung transplant would be too risky.  I was certain this would be the case but did not want to discuss it until I had their final answer.  The transplant team  was absolutely amazing!  When we met with Dr. Yung he explained why my case was so complicated.  This was crucial for me as the other three places I was referred to just sent me a letter.  UCSD wanted to take the time to review not only my records but to meet me in person before making a decision.  Dr. Yung felt that was the least they could do for such a big decision.  He said that I would make a good candidate for transplant based on my social supports, my intelligence and the fact that  I was a former medical social worker.  However, he said, that because of my body structure, radiation damage (scar tissue) and potential complications, they cannot in good faith do the surgery.  About the “body structure”….along with radiation damage, I also have scoliosis.  This was partially fixed with a spinal fusion I had done when I was 14.  However, I still have some curvature in which my spine is compressing one of my lungs so that it can not fully inflate.  Dr. Yung said that even if they could get a new lung in that space, it is doubtful that do any good because the new lung would still not be able to inflate properly.  He also said that if the surgery took more than 9 hours to get my old asshole lungs out, the new baby non-asshole lungs would be dead.  That would be no bueno!  Then there is the whole, no guarantee the transplant would take and I would risk rejection.  Also, I would be trading in one chronic illness for another, taking anti-rejection meds that cause kidney damage and put me at high risk for skin cancer, so I would have to stay out of the sun!  If you know me, that is just NOT gonna happen.  I LOVE the sunshine.  In the end, Dr. Yung said he feels that medication for my pulmonary hypertention would be the best for me at this point to help maximize my lungs and life span.

I am sorry if this makes you sad reading this.  I hope it doesn’t.  I am not sad about it.  Actually, I was relieved.  I finally knew why I was being “rejected”.  I now have an answer for anyone who wants to know if I can get a lung transplant.  No, no I cannot.  Honestly, I never wanted one.  I felt I had to go through this to feel comfortable saying no.  It’s complicated to explain but in essence, I was only willing to consider a transplant for others.  And in the end, I found only one good reason to have one and that was for my son.  I wanted to be sure that I had exhausted all options to be here for him as long as I can.  HE was the only reason I would have gone through the surgery and that is difficult to say to people, difficult to say to people  I love and who love me.

So what’s next?  Well, I will continue to go see Dr. Leary at the UW for my pulmonary hypertension.  I see him again in August and hopefully we can get started on another medication to help me breathe better.  I will continue to see my Cardiologist Dr. Everett to monitor my heart.  I will take care of myself and continue to seek out alternative therapies to combat my symptoms.   But in all actuality, I am just gonna keep living and enjoying life!  I will continue to travel as much as I can, while I can!  I am sure as my disease progresses that may get more difficult.  I will go to every concert I want to, spend time with my family, and be a fully present mother for my son!

Please share my story if you think it would help anyone.  Thanks to all the readers, friends and people who reach out to me, it helps keep me going!  I like hearing from all of you!  And if you could share my gofundme.  I am so ever grateful to those who have donated because it has made a huge impact on our lives and not worry about how we are going to pay our bills and health costs!  I love you all!

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

rmdrake

Trips galore…on the road again.

Hi all!  Tomorrow, I will be heading with my husband and son to New Mexico where I was born.  We will be there visiting family and eating a shit ton of green and red chili!  I am sure I will be somewhat non-compliant with my low sodium diet because my family has some kind of obsession with salt!  Seriously, it is ridiculous and surprising they all do not have heart disease!  Anyway, we will be enjoying ourselves immensely.  Though, I am a bit scared about the altitude.  Spokane sits at about 1800ft, my house is at 2300ft.  People with Pulmonary hypertension or heart failure do not do well with high altitudes.  Albuquerque sits around 5300ft, is where my mom lives.  Grants, NM, where my dad and most family live (the town I was born) sits at 6400ft!  I hope I can acclimate to it ok but I am sure I will be more tired and more short of breath than usual.  I may have to crank my oxygen way up! While I was in San Diego, at Sea level, I felt amazing!  I even forgot I needed oxygen once and nearly left a restaurant without my concentrator!  I will put up a few articles i found that explain how high altitudes may affect someone with cardiopulmonary problems at the bottom of this page.

I know some of you were hoping t0 hear what UCSD had to say about new lungs.  I am sorry to report I have not heard the “final” word yet.  I should get news day and I don’t wanna write about it until then.  However, I wanted to share some pics from the trip!    I’ll check in when I am home, please send good vibes and thoughts of clean air my way! 🙂

 

http://emedicine.medscape.com/article/901668-overview

The Effects of Altitude on Lung Disease

http://www.altitudemedicine.org/altitude-and-pre-existing-conditions/

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