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

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

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! 

*********************************

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! 

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

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! 

Will I ever learn? I hate limits.

Well I overdid it again this weekend. Went bowling Friday to celebrate Lisa’s bday! It was a lot of fun, harder than I thought though. I would run out if breath pretty quick just rolling a dumb ball!!! Scott told me I could have a spa day if I picked up a split. I am NOT a bowler, in fact, I’m horrible. But I picked it up and now I get a spa day! Yeah! 

On Saturday, Rebecca and I got all dressed up and went to the Strut Fashion Show. That was a great time! I got home late both nights. I’m guessing not sleeping well and too much activity is why I am feeling like shit today. More SOB and very tired. Without my O2 my sats drop into the 80’s quickly. No appetite, I just want to drink liquids cause of the darn diuretic I have to take. I’m just so thirsty! Ugh. I wanted to help with yard work today and was only able to spread my wildflower seeds cause even that was too much work today. Hopefully, I’ll be able to get my starters planted this week. I hate feeling like this because it makes me emotional and think about what I want/should be able to do but can’t.  

My visit to the UW doc went really well. My echo looked great so he doesn’t want to start a new med. He also said that my heart failure is a little bit improved! However, I am also very deficient in Vitamins B and D, and nutritionally deficient. With heart failure people tend to not have appetites. He wants me to see a nutritionist to help correct some of these issues. I also have a date finally to go to UC San Diego hospital to meet with the transplant team! I’ll be going over mid June! I have a lot of mixed feelings about this but I want to hear what they have to say will keep you all updated. For now, I am going to rest and get my mind in a better place because I know that tomorrow is going to be a better day!  

I also want to thank everyone who donated to my gofundme, those of you who send good vibes and prayers! I was able to purchase my inogen portable oxygen machine and I love it!  I will post pics of it once I get some taken! It’s a life saver and gives me so much more freedom! The funds are also going to be so helpful with all this traveling to medical appointments especially out of state! I can’t imagine what I would do if I didn’t have the support of family, friends and even strangers who have donated! I am extremely humbled and thankful, words can never do it justice.


This pic is of me and Rebecca posing at The Davenport Hotel before going to the fashion show.  Rebecca is one of my best friends and also has Pulmonary Hypertension caused treatments to cure childhood cancer.  We share a special bond because of all we have in common. Especially, when both of us need to stop to catch our breath.

A new accomplishment!

  
I’m feeling quite accomplished today! I just went grocery shopping by myself for the first time in FOREVER! While the pic above doesn’t look like much (those bags were heavy) it was a lot for me.  I had to stop to rest a lot, especially with bringing them inside the house, but I got it done! I handled it!  Thanks to the warmer weather, I’m able to do more!  

My husband made me cry!

My husband made me cry Sunday afternoon by teaching me about drawing using perspectives, horizon lines and focal points. When the lesson was finished and I looked at what I did I started to cry. It felt good to learn something new and see progress, after months of not working and feeling like I’ve lost myself. On Sunday I felt a glimmer of something I didn’t even know was there.  Who am I really?  I was a social worker,  went to school and obtained a master’s degree in the field.  I worked and loved my job until having to leave.    However,the last six months of being so sick, I haven’t felt like I’ve really done anything. Nor have I wanted to do anything. Now it’s time for me to learn all the things I’ve wanted to but never had “time”?  Am I an artist?  Maybe there is a Frida Kahlo hidden somewhere deep inside of me dying to get out?  I am going to continue to learn and get my paints out again!PicCollage

The iron infusions I have definitely helped me have more energy!  I am less tired than before and no longer feel like need to nap every day.  I do wear out easily still, so I need to remember pace myself.  I have been very busy the past few weeks.  I spent some time in Seattle for my son’s spring break.  We had so much fun together!  We hung out with family and went to the zoo.  I was able to have some quality time with him just mom and son!  We went to the aquarium, explored Pikes Place Market, and he ate all the sushi he could find.  He is the kindest, smartest 13 y.o. I know!  He takes such great care of me too.  He didn’t complain once that I walk too slow or need to stop to rest.  He reminds me to take my medications, offers to carry everything we have and will take my arm to help pull me up a hill.  I am a very lucky mom to have a son like him!  The best part of all of this is being able to spend this time with him!

When we returned, I FINALLY had my sleep study!  I slept better than I thought I would with all the wires/electrodes attached to me!  I won’t have the results for a bit but the sleep tech did tell me that I didn’t have any major “breathing events” and she did not think they would need to put me on a CPAP or BiPAP which would be amazing! Keeping my fingers crossed because I really do not want more machines in our room! I have an appo at UW again in May and hopefully, will have an idea where to go from here.  Until then, I will just keep truckin’ along.  Thanks for reading and for all the comments and support!  They really help me get through!IMG_1523.JPG

O2 4 Life!

img_1119

I’m getting so used to the oxygen cannula on my face, I barely notice it anymore. It’s part of me now. Still annoying most times but it helps. I had a friend who hasn’t seen me in a while ask if now I look like one of those “little old people carrying their oxygen around”? I can honestly say, no! I don’t look old, little, well that’s another issue! But I definitely don’t think I look old with my O’s. Guess that’s why it’s so shocking for people to see me. Strangers stare cause you don’t expect it. When I have it off I don’t look sick at all. Makes ya wonder how many others suffer some kind of chronic invisible illness they just don’t tell anyone about.

Up and up…down and out but coming back up swinging! 


The past week is been rough, I just haven’t felt good since Sunday. I’ve had more shortness of breath, I haven’t been sleeping well and even though it sounds weird, I just feel like my heart is too big for my body. It’s hard to explain but it just beats too hard. Guess it’s disappointing that I’ve been feeling better the past month and now feel like shit again.  I went to see my pulmonary htn doc. He sent me for an echo. Just heard that the echo was fine but there may be some fluid in my lungs. So had to go get a chest X-ray today. I tell ya, it’s a good thing I am not working cause having a chronic illness is a full time job in its self! Well, the X-ray checked out fine too. Which is all good, don’t get me wrong! I’m happy I just wish I knew what is causing the changes.  Maybe it’s just the disease. It’s a tease when I feel good. Like I think that maybe I’ll feel good always. Kinda like you don’t really notice your teeth until you have a toothache.

In other news, I’ve decided this is the year of the concerts for me!  So I’m looking for some shows for April to fill up that month hopefully in Portland! Let me know if you hear of anything!

Oh one last thing to throw a wrench in my emotions.  When I saw my pulmonary doc he said he wanted to send my records to one more place regarding transplant. Remember my last post talked about getting turned down by three places and I made peace with it? Well, Dr. J went to a conference in San Diego recently and wants some of the cardiothoracic surgeons he met to take a look.  It can’t hurt right? I honestly do not think the answer will be different but whatever. I also admire and love that he doesn’t want to give up. So yeah, of coarse I gave him the go ahead.  Who knows, even if they say no about transplant, maybe they will have other options on treatment for me.

With all that I’ve been through in my life I’ve learned that no matter what, life is too short. So I’m doing my best to live in the moment. I try not to think ahead too much. I try not to look back, but put my attention on the here and now. So eat your dessert first, drink all the wine and go to every concert you desire!