A blog inspired by my life and my medical struggles. My hope is to bring back as much kindness and support as so many have given to me when I needed it most!
We live in a world that judges you based on your past. It is human nature for us to do so. One might say this is unfair, and I say its just part of the journey of life. People will always keep a record of your wrongs even when you have turned over a new leaf. I have learned this all the hard way. That brings me to my first lesson learned this year. The world rarely gives you a chance to prove that you have changed, but GOD always does.
Without hesitation I can say that this year has been the most challenging of them all. I have gone from 24% lung function down to 8%. Since 2005 when they discovered my tumor I have been in a constant state of mental turmoil. One day I will be out to conquer the world and the next I’m focusing on obstacles that life throws my way to the extent of letting it get me down. When you are powerless over something in your life it becomes so very important to use your power of choice and power of focus. I have gone from choreographing dance routines to choreographing the best way to get myself up and down a flight of stairs. My medical story is a story of overwhelming setbacks and obstacles. My story has given me the opportunity to feel emotions on the deepest of levels. My story does not have room for FEAR. This lesson in fearis a lesson that I have noticed I have to continually battle year after year. As soon as we become too comfortable with anything in our life we close ourselves off to being able to receive the full blessings that come along with it. If we stay focused on the things that matter most daily we will ALWAYS be able to see the wonderful little things that go along with that particular lesson learned. By me not focusing on how devastating fear can be to my psyche I allowed myself one more year of useless emotion.
Lastly my most favorite revelation about myself this year has been PRIDE.
The Bible Says : Proverbs 18:12 Before his downfall a man's heart is proud, but humility comes before honor.
Wikapedia says: With a negativeconnotation, pride refers to an inflated sense of one's personal status or accomplishments, often usedsynonymouslywithhubris.
No matter if it’s the book of life or the book that helps us understand the meanings of words in life they both have negativity attached to them. The kind of PRIDE that has allowed me to not ask for help where I knew I needed it most breaks my heart. The fact that I have known that I had demons within me that exist, and knew exactly where to go for help, and didn’t, kill me. How could I become so prideful that I would not talk to someone to let them know I needed help? What kind of example is that setting for my daughter? How is my life not important enough to ask for the help needed to save it? I realize it is. It is VERY IMPORTANT. I should not be ashamed for asking for help. Nor should I be ashamed to say where I have been in life.
Regardless of the negative connotations that the world puts on so many things, I will NEVER be ashamed for being a human being! We all make mistakes. I will no longer judge someone based on their past. They don’t live there anymore. I will try to embrace HOPE instead of so much FEAR. Most importantly I will put my pride aside more often and soak up every opportunity to learn about myself. I thought it would be good if I could come up with a little sentence or phrase to help me remember my top 3 lessons learned in 2011. What I came up with made so much sense.
“I will put my pride aside, lay down my fears, and not worry about if people will judge me. –Lisa Roberts”
Many a days and nights I weep for myself on the note that I fall unto the ones who emotionaly enslave my life to sadness.
I give those who hang in there and deal with depression and sadness in my state and preserve mind function so much respect.
Telling me how to talk how to walk, its never enough for them.
In the end we're all just trying to find the fine line to walk out our existence.
Until that day I am who I am.
I'd rather everybody hate me for everything I am, then everybody love me for everything I'm not.
These are hard words to say but I keep them inside so much that I feel as though the pot is about to boil over if it has not already.
Nobody asks to be depressed.
Nobody asks to be obese.
Nobody asks to be ugly.
Nobody asks to be an outcast.
Nobody asks to have problems and issues.
Nobody wants to be the dog that's kicked when its down.
Nobody asks to continually disappoint the ones they love.
FORGIVENESS. FORGIVE. FORGIVING
"a penny for my thoughts, oh no, I'll sell them for a dollar
They're worth so much more after I'm a goner
And maybe then you'll hear the words I been singin'
Funny when you're dead how people start listenin' "
--- i feel its so sad that we are not allowed to express ourselves when we are down but only when we are happy. why does everyone get all bent out of shape when someone uses this type of forum to express their feelings? to you i say read a little more. be scared a little less and learn from the words instead of judging and thinking someone is "off their rocker!" words are beautiful!
Its been far too long since I have clicked away at my keyboard to fill you in on what life has been like. I suppose it has just been too hard to face. Recently I lost my inspiration in the realest form. Her name was V Kingsly. V was not like any other cancer patient or person fighting for her life. She was a VERY REAL human being that gave so much of herself to others through her writing and amazing gifts. She was the only surviving person in the united states that i knew of that had paraneoplastic pemhigus. She is in my thoughts so very much and I will always wonder what it would have been like to meet her.
This year has been a HUGE lesson in life and love. Balancing a career with a family is a tough job in itself. I found my outlet by allowing myself my own schedule, being home, and doing something I LOVE..... making TuTu's! My new business is Lisa Lou's Tutu's and im loving the creative outlet that it allows me to have.
Still waiting for lungs... going through another 50+ appointment workup to keep all my medical information up to date so that when that phone rings for lungs I will be READY! I have not always been excited for this procedure despite how optimistic I am about the entire situation. I can honestly say after having met with my Lung Transplant Surgeon Im OVERLY excited. He showed me where the incisions will be and how they will break the breast bone and cable it shut after surgery. He said I retain so much Carbon Dioxide that my lungs are getting larger in size with the trapped air which increases my chances of getting lungs from someone a little bit bigger than me. This is always a good thing. Iam now down to 11% and go thursday for another 2 hour Pulmonary Function Test to see if im still sitting at 11%.
Emily is growing up so fast. She can ride her bike with no training wheels and made it into the BIG GIRL pool in swimming lessons. Her intelligence far surpasses that of an average 5 year old. How am I so blessed with such an amazing little human being? Sometimes i sit back and watch her play, or talk with her friends and im absolutely proud of her communication skills and her willingness to help kids that can't stick up for themselves. She has a heart for so many and she touches so many lives.
Im done being anti-social (through my writing) that is. Im ready to give you all I have..... here's to more and more and more blogs filled with my life and the wonderful things that are in it!
So today I sit here in my bed....
Its noon.....
My mind is taking me places I want to go but my body will not allow me to do so.
Updates
_______
Pneumonia : Battle , fighting, and trying to get this dreaded lung issue under control. Everyone Else's common cold turns into the dreaded Pneumonia for me and its just a pain in my side... I'm telling you a PAIN in my side. I'm on some hefty antibiotics, steroids, and breathing treatments along with my oxygen of course. Mornings are still the absolute WORST. I take a breathing treatment and feel like I can clean the house and take over the world and an hour later i lose that breathing treatment super hero feeling and back to the bed I go... I'm so thankful I made it through Christmas and the Nutcracker productions for my little girl.
Christmas: Emily was blessed beyond measure this year. zhu zhu pet everything, and all kinds of arts and crafts for mommy and her to do together. She was a HUGE hit in the production of the Nutcracker this year. She was a party girl, snow angel, gum drop, sheep, angel, and waltzing flower. Her bravery and interest in theater is just a joy to see. She asks me every week when she can dance on stage again.
Ballet: Iam now the Administrator at the Lighthouse Ballet Academy and LOVE what I do. We just recently put together the Nutcracker and in May we will be doing Cinderella. I found a new passion for sewing and got a sewing machine from my mother for Christmas. I'm so excited to start making clothes and costumes.
this is just A BRIEF, QUICK , AND much needed update. When I'm not so sleepy i will take some more time to go into detail on some of these things like I should have done right now :/ love you all and thank you for your ongoing support and well wishes.
IF YOU ARE NOT AN ORGAN DONOR PLEASE WATCH THIS VIDEO AND RETHINK YOUR OPTION AS YOU COULD SAVE SOMEONES LIFE WHO MIGHT DIE ON A WAITING LIST WAITING FOR AN ORGAN TRANSPLANT!
I can feel it. The need to breath. The want to breath to see my little girl grow up , graduate, go to college, get married ,and have children. The want to see my little nieces and nephews play sports and be able to be together at holidays and other special moments. I often wonder if me putting my Lung Transplant on (hold) was in my best interest. I have been struggling way more than usual and have a feeling when I go into the clinic to get my 3 month check on my lung function and oxygen levels they will suggest getting put on the (active) waiting list. My last PFT (Pulmonary Function Test) I had done was horrible. I am gradually decreasing. One of the references that they test for Pulmonary Obstruction (which is what I have) is by the FEV1. This stands for Forced Expiratory Volume in 1 second. The maximum volume of air that can forcibly blow out in the first second during the FEV manoeuvre. A healthy girl my age should be within 75-85%. Mine is down to 23% as of December 4th 2009. They use the FEV1 as a huge marker in patients needing transplant as it shows how much obstruction you have going on in your bronchial airways.
Five months ago my mother and my fiance Ryan attended a Lung Transplant Education course needed to complete my final approval for transplant. It put me in a state of mind that I didn't expect. Instead of leaving having some sort of comfort and knowledge I could hardly remember what the lady was speaking about for hours, I had a full blown anxiety attack in the car on the way home, and was convinced I was not ready for this Transplant. The statistics and complications outweighed my struggle to breath everyday by far. Now I'm feeling just the opposite. I'm starting to feel like my struggle for breathing is not only dangerous to my otherwise healthy heart, and my overall state of being. Not being able to gain weight has been the biggest struggle of them all. They call it the hypoxemic diet. Eating nothing but air. In a way its funny but its so true. I spend all day sucking in ridiculous amounts of air , working my heart into a marathon running like state, and all the while trying to stay calm like places in church. Inside I feel so anxious, and nervous.
In my class I learned so much about Lung Transplant and how it works. It was not until 1963 that the first human lung was transplanted. It was NOT successful. Up until 1983 lung transplants were still considered experimental treatments. It was then in 1983, the year I was born that the very FIRST successful lung transplant was completed. I will be receiving all my transplant care at the University of Washington, one of the very best in transplant survival rates and patient care. They are currently transplanting around 50 sets of lungs a year in Seattle.
UNOS is the United Network for Organ Sharing and is an important part of my education on lung transplant. They hold all the Typical wait list volumes for the United States and other vital statistics. Each year there are wait list volumes that follow as such:
Contrary to what most might think about a waiting list I learned quite a bit that made me feel like if I did get on that list that I would actually have a chance at getting a pair of lungs. They go off of this new system called the LAS (Lung Allocation Score) They test you on a number of different areas like age, diagnosis, smoking history, BMI, Functional status, and 6 minute walk tests to name a few. You are given a score depending on where you place in all these areas. The higher the score the higher you go up on the waiting list. That doesn't necessarily mean that you will be the first to receive lungs because you have to remember that you cannot put 6' tall 250 lb man lungs into my little 100 lb 5'3" body. It has to be a size match. Also, because I have conceived a child I produce a hormone that could not mesh with a donor lung if they too do not produce this hormone. It is complicated, and absolutely amazing that so much goes into getting a pair of lungs. The general wait time is about 683 days according to UNOS as of right now for lungs.
UWMC SURVIVAL STATISTICS
Average survival 2000-2009
1 year- 85%
3 year- 73%
5 year- 62%
these are amazing compared to the overall averages reported by all centers in the US. I feel so blessed to be a part of the UWMC medical transplant team. For instance the Survival for 3 years as reported from all centers averaged out was 66%. That is a whole 7% difference on MY SIDE :)
I am in the WAMI region which means I will receive donor lungs from Washington, Alaska, Montana, Idaho, and Oregon. When my transplant doctor, Dr. Mulligan receives information from another donor center in any of these states the call would go something like this. "Dr. Mulligan I have a set of lungs here from a 125 lb female who has overdosed on drugs. She was pronounced dead 20 minutes ago. She has also had a child and was wondering if you had any donors that could possibly match her." Dr. Mulligan knowing my size and history would most likely say yes i do and would be on the next flight to wherever these lungs are available. First I would receive a phone call or page on my pager saying your lungs are ready you have 2 hours to get here for surgery. He flies a private jet to get lungs, inspects them himself and says yes or no right on the spot after looking at them. If for some reason he gets there and they just do not look like something he wants to put in my body then I would be notified while in a gown in surgery waiting that this was a "dry run" meaning Dr. was NOT pleased with the look of the lungs and to go home and wait for the next phone call. This can happen up to 3 times for some people.
With all this said you can see how I'm scared in some ways but very HOPEFUL in others. When it really comes down to it my whole life will change again. 17 drugs for the rest of my life. Infections constantly. Possibility of rejection. Little to no immune system and that is no fun all in itself.
OK that was just the TIP of the iceberg but information that most of you might not have known otherwise so I wanted to post it so that we are all on the same page. Back to the more upbeat Lisa.....
What good Is it going to do to worry and worry about something that is out of my control.
God has a plan for my life and who am I to question what he has in store for me. I need my friends and family to help me through this and keep me positive. I know I will need you more than I ever have.
God is making this transplant and everything else that has gone on in my life easier knowing that if anything should happen to me, I will be with him forever. Not a bad place to be if you ask me. Does this mean that I'm giving up because it saddens me or scares me in some ways? NEVER! I will never give up. I want to be that 80 year old woman who looks back and says, "WOW I was the percent that defied all percentages and statistics known to man!" That will be me. That will be me!
The woman who inspired me to start blogging and writing about my medical journey was V. We found eachother through a post on You Tube regarding IVIG therapy's and it's importance. Come to find out she suffers from Paraneoplastic Pemphigus and the lung condition that I'm plagued with for the rest of my life if I dont get a successfull lung transplant. Her level of PNP was so severe that she actually went blind and again regained her vision some time later. It would be like me falling down and getting my knee scraped compared to the tribulations this woman has gone through to fight for her life. Even though my PNP has definitely got the best of me at times and my life expectancy was hanging by a thread I made it through.
As months go by and the more stories we share with one another and our health the more important I know it is that I must go see her. I will not feel complete in anything I do until I meet this woman. She has a beautiful family and knows EXACTLY what I'm talking about when I say how I feel.
How the thought of stairs makes me want to vomit. How sitting up for an hour in the morning coughing up junk out of my lungs is the norm before even drinking my morning coffee. How having to pick and choose what to eat and when depending on your PNP flaring up and how it might turn your mouth into hamburger help-me! How having little to no energy to do the most simple things in life makes us feel like we are 90 years old. How getting up and taking a shower and getting ourselves presentable for the day is more like the equivalent of running a 5k.
I know V feels me on all of these things. I have never met her, but I know her. I love her, and I can't wait to meet her and her family. She lives in San Fransisco where I have family that is willing to let me stay if I need to, so I'm getting excited to see her in the very near future.
The reason V is on my mind so much today is because her cancer has come back. She is going through chemotherapy and it just sucks. As if that is not enough she has to deal with our dreaded lung disease which rips every bit of happiness and energy you did have out of your day when its "acting up!" Its just so unfortunate to see her struggle when I wish I could be there to help her when I'm strong and vice versa.
This month her sweet wife Dani and son Parker took her on a trip to see Scotland, London, and Paris to name a few. She wrote me the other day and said that she was in a wheelchair wheeling around seeing the sites and that it was exhausting but spectacular!
V put it simply in her last email to me that she sent from Angel Station in London. Our diseases might take away some things but NOT everything! She couldn't have said it any better. Please remember every day is a blessing. I have certainly been in a funk lately and need to get my self back to my "better more inspirational" frame of mind. I would not be human though if I said every day was sunny without a chance of showers.
Thank you for reading! God Bless all of you who pray for me, V, and anyone else who struggles to hang on for dear life!
****************************************************************************
If you are ever interested in following V's blog she is an amazing writer and story teller. Her website is http://www.alotoflife.com/ you can access her blog at the very top uner V'S VERSION BLOG.
(EVERYONE SING) Over the pass and through the mountains to grandmother's house we go. The mother in law knows the way to carry the K - I -A through the rain, hail , sleet and snooooowwwwwww OH!
My fly by the seat of my pants attitude certainly got the best of me this week. On Thursday of last week my soon to be mother in law says to me, "Want to go on a road trip to California tomorrow?" Of course I was all in. Spent the whole day packing and getting ready for Emily and I to go on our road trip with Grammy. Ryan had to work so we left him home to fend for himself. We drove my car, (the K-I-A) to Susanville, California. Contrary to what most might think, this part of California is cold, dry, and COLD! In the mountains it is nestled and is a very small little town. This is where Ryan grew up and played football in high school so I was really excited to see his old house and his hometown.
We arrived on Friday night and as soon as I got out of the car I thought I might be coming down with a cold or something. By the time I woke up on Saturday I was fully stuffed in all my nasal passages and miserable as ever. We were staying with Ryan's Grammy Jane at her house and I just have to say she is the ultimate version of an amazing Grandma. Fresh baked cookies, soft warm beds to sleep in, and meals that even Paula dean could not do justice. Grammy Jane is hospitable, loving, and always trying to make you feel comfortable.
Even though I was not feeling great I tried to visit with family and friends and enjoy my time. By Sunday my heart rate was so fast I knew I had to go to the ER to get things checked out. They did a cat scan , chest x-ray, blood work , and urine tests. I ended up having allergies to whatever was in bloom in that area at the time that caused me to have a severe sinusitis infection that showed up on a CAT SCAN. My oxygen level was at 79% with no oxygen on due to the higher elevation. Being that I only have 20% lung function it made it that much harder to breath up at 5,000 ft when back home we are at sea level. Quite a combo of things going on with a heart rate of 150 bpm just laying down in a bed. I cant imagine what it was while i was up motoring around the previous 2 days. The doctors were very worried about my heart rate and would not let me leave until they felt it was down enough for me to travel back home. This small little hospital in Susanville, CA did not have room for me. They decided to send me by ambulance to the big hospital in RENO, NV for my stay.
I had a HUGE hospital room, cool skylight, bed for my mother in law to sleep in, and i could go on and on. It was a really great room. My view out my window was of the Reno Nevada strip. Pretty amazing! Once doctors got my heart rate down they sent me home with enough oxygen to get to Washington in hopes that once i returned i would go right back to normal. Thank god that is exactly what happened. I couldn't have done it without my Mother in law who was so amazing and stood next to me the whole time. She prayed with me, cried with me, listened to me , and was just there. I love her and will always remember our fly by the seat of our pants trip to california.We can laugh now :)
