Sunday, August 12, 2012

Mail to Germany

Well my first official package that I am able to send on my own to my Donor in Germany is going to be on its way come Monday. That is if I make it to the post office that is just around the corner from my house, which I seem to have a difficult time doing sometimes. I am super excited and can't wait to send this off to him. I wrote a long letter and my Nurse was able to translate it because she is from Germany originally. It was cool because now I don't have to go through all the different organizations to get approval. I know his phone numbers and address so we can freely communicate with each other. I just almost come to tears every time I think of him and what he has done for me. I mean the whole transplant was anti-climatic but, I mean he gave me a second chance at life and I could never repay him for that special gift that he gave me. I also put together two photo albums for him. I included Pics of my life before cancer with family and friends and also another album of the process going through cancer. I included the pics of me actually receiving his bone marrow and when I was in the hospital. I can't wait to hear what he thinks and know a little more about this kind stranger. It is such a fun journey!!!

Friday, August 3, 2012

Patient Rights and Advocay

           I am about to fall asleep here so I don't know if this the best time to really write about such an important subject. But here I go and I will give it my best. I have been a big supporter in the last few years concerning patient advocacy and rights, also the treatment and love that some hospitals neglect to give to hurting patients.
           I was a very fortunate person in that I have an amazing staff of  Doctors, PA's, Nurse Coordinators, RN's, CCP's, Nurse Practitioners, Social Workers, Psychologists that all work with me. Then there are all those others that seem to do the little but very important things like make appointments and bill insurance, take phone calls and all this other stuff that happens behind the scenes (Yeah, I'm talking about you: Tina Marie, Sandra, Michelle, Paula and all others I didn't mention). I Love you all to death! It takes a lot to pull off a well organized place such as Moores Cancer Center and Thornton Hospital. I think they are doing quite a good job.
           From my experience being around so many sick individuals with some type of cancer, some of them life threatening. They either say, do whatever you want to me " I DON'T CARE! Put whatever in me I am going to die anyway" this happens when one just gives up on themselves and don't want to even START the fight for recovery.There comes a point in the beginning that they were fighting, but for some reason they can't do it anymore, and give up. Then there are those that had been doing pretty well and then all of a sudden they hit a bump in the road and it puts them out for a little longer and they get so tired of fighting that they begin to lose their will to live. That is a sad moment when that happens, it is like the life leaves their eyes and you know they are gone, they quit fighting. I can relate because I had a three month period where that happened to me, but lucky for me I am strong willed and I just keep fighting, for some reason I knew it wasn't my time to die. I have seen more heartache in these past few years that no person should have to go through after building relationships with these wonderful people. To all that have lost the battle to Cancer just know that cancer is a sick SOB and that you are all rock-stars for fighting as long as you do. I know our inner strength has a lot to do with our health, but I do know it largely is if your body can handle and accept all the medication and torture it is put through. To all my 3West Cancer Posee Patients that have passed away just know that I miss you so much and everyone of you impacted my walk in this journey in some unique and amazing ways. THANKS!!!
              I just want to encourage everyone, even if you don't have a cancer diagnosis to know your rights during procedures and medical decisions. You never know if one day you wake up and have a life threatening disease like I did. When I was getting treatment I asked TONS of questions and had them explain what things meant and I am faithful about keeping myself knowledgeable about what is going on in my body. And I do have a great doctor who is pretty on top of things and listens to me when I need to be heard. We have a right to know everything that is going on; without question. Also if you don't partiality like a certain nurse or other person that is taking care of you, then tell the Charge Nurse or their superior and tell them the truth. They wont be offended I think. There were a few nurses or doctors that I didn't care for, I had to request a new one a couple times during my times in the Hospital. They need to attend to your needs and not the other way around. You will defiantly know who are the ones that you are able to connect with and make your time in the hospital more enjoyable.
              I was just reflecting on a hospital that my aunt just got discharged from this week in Temecula.. She had to get a hip replacement. I went and visited her while she was in the hospital that she was at, and it was horrible. They didn't even look or act like they really wanted to be there. She would use her call button for something and it would take then like a least an hour to get there. I finally just wanted to go and give them a piece of my mind. I have become a huge patient advocate in wanting patients to speak up because technically the nurses and Doctors are working for us the patient, and you are paying the insurance, they need to be way more attentive. That was a very frustrating moment because I know the pain and when you hit that call light for pain meds of whatever else, it is IMPORTANT!!! Other wise why would I be paging you guys so much. My Aunt it pretty layed- back and doesn't like any confrontation and says, '' oh know they know what they are doing", no forget that, they need to be more hospitable and organized. You Must ask lots of questions about every little thing that is going into your human body. If you are not comfortable with a procedure or medication or etc. being done to you, speak up and ask if there was a replacement or another route they could do. Now most the time especially now they have a certain way of doing things and its harder to find alternate methods for severe cases.
                 I just have to now talk about the most amazingly wonderful person in the entire World. Her name is Ursula and she is my doctors nurse and works with us BMT patients. She is always smiling and working harder than most people ever do. How she keeps track of all of us patients is incomprehensible to me. Also when I gave her a request for a scrip refill, paper work and translating the letter I wrote to my Donor. And it doesn't take weeks to get stuff back. She is Amazing!!!!! And I can't say that enough. I am planning to do something special for her for everything else she does. (I think I know who superwoman is)     :)
                So in closing with this very important issue, I am greatly blessed to have such a wonderful group of medical professionals. They have become like my second family because they treat me well and like a family, That is how health care in this country is supposed to be. I just want to encourage people to take care of their heath now. Although there was nothing to do or not do something to get diagnosed with Leukemia, it just happened from "BAD LUCK", so they say. So whether you end up getting a big cancer diagnosis like me and many other unsuspecting people. Whether it is treatable of not and whether you want to deal with it is your choice. Personally I knew there was substantial risk that the Chemo and Radiation does to a person, but there I did it anyway. Then the transplant process was a little exciting and scary at the same time. I mean if my donors cells did not like my body and rejected it I probably wouldn't even be here. I just encourage all you Caner patients. We are going to find a cure someday (CURES ROCK)!!!!! Then we will kick Caners Ass.
                    So here are some tips that have helped me immensely. I don't know about other Cancer places but at Morres they offer a huge range of awesome material in the patient resource center, Books you can borrow, books you can keep, Internet access, homemade items, wigs and literature on many different illnesses, but mostly dealing with Caner related things, Everything is free and has given me so much knowledge, that I just hunger and crave for more. I think that is why I am going to try to get my RN so I can be one of those compassionate nurses and share comfort and tears, and give them some ideas on life after transplant, because life is so different when you get back on the outside again, The doctors always try to give you the best case scenario, but most likely it will not happen. So enjoy things while you can and live it up BABY!!!!
                                                FIGHT FOR YOUR RIGHTS!!!

3. American Red Cross :


Wednesday, August 1, 2012

Whats New on the home Front

        Well yet again it has been quite a while since I have updated here. Summer 2012 is in full swing and I cant believe that it is almost coming to a close. I just returned a week ago from a 7 day trip to Montana. It was so incredibly awesome. I was very delighted to be back in the Big Sky Country. I went back to Augusta and to the Bible College that I attended and worked at for several years. We had a reunion and I was able to catch up with many old friends and was able to meet some new amazing people.
        I did quite a bit of traveling around the state making stops in different towns and stayed with some good friends along the way. All in all it was a very important and uplifting trip for me. It increased my confidence immensely and I pushed myself harder than I thought my body could take, BUT I DID IT! I was able to hike around a little, shot some guns (thanks Ben), see amazing wildlife and mountains and catch up with people I haven't seen in like 9 years. I was defiantly tired by the time my plane landed back in LA but it felt so good to be back in California. I love it so much here now and It is the place that is my home. Everyday has been super busy since arriving back home. Not a second to breathe yet but I am enjoying having such a fast paced life after so long sitting around and doing nothing pretty much. My energy level is on a high and I am feeling so good after getting off a lot of my medication in these last few months. It is pretty amazing how much these drugs had an affect on me and I didn't even realize it. But let me tell you it was no small task to get off of them. I am really proud of myself for having the will and determination to do it. It has been a long road but I am seeing the light and hopefully I wont fall back into a valley, like what has happened so many times before. I am staying strong and kicking cancers a**. I will be Cancer free for 4 years in September. Wow what a journey!
       I am now just enjoying life so very much. I am just happy to be alive right now. I am going to lots of Angel games and baking again. I try to get out and do things and am thinking about starting some classes in the Fall semester. I am a little weary about going back to school because I have been out of the academic world for so long now. I am thinking about going to study to be an RN. I have developed such a passion for medical stuff through my whole ordeal and have learned so many wonderful things that I just want to keep learning more. I figure I can also be a compassionate nurse because I can identify with being a patient and when I say I understand and feel their frustration and pain I really mean it. I would love to work as a Bone Marrow Transplant and Cancer Nurse. There is such a need for some good nurses in that department and I know how much of an impact my nurses have had on me and how thankful I am for their love and compassion toward me. I just want to pay it back to others that have to deal with the struggles I had to deal with.

Monday, October 17, 2011

My New Tattoo

My original Design
My new Tattoo

Here are some pics of my new tattoo that I got last week. I had designed a general pic of what I wanted and found an amazing guy to tattoo me and make my design a million times better. It represents my transplant and journey through cancer. I have the date of my transplant with a orange ribbon for leukemia. I have a purple heart for being a survivor. And hope and love in German for my bone marrow donor from Germany. I love it and yes tattoo's can become addictive, just a warning. (:

Tuesday, September 6, 2011

A New and Refreshed Life

Today was a another trip to San Diego to pick up some meds. I am very pleased to announce that for about four months now I have reduced my visits to the cancer center to once a month yay!!!!!. I get blood drawn and visit with my primary doctor now only 12 times a year. It doesn't sound to much when you sat it that way. I am super excited and have been enjoying a little more freedom and not being bogged down by needles or appointments of many sorts. I still have to get all my meds from the cancer pharmacy in La Jolla, so I do make more trips than I would like right now, but hopefully we can get them turned around where they can coincide with my appointments that I have monthly. I just can't believe that we are creeping up on the 3rd anniversary of my new life (when I received my transplant). It has been a long hard 3 years but I am almost off most of my meds and on my way to being my normal again. Wow never thought this is what I would be doing and spending my time for these years of my life recovering like this. But It has been such a blessing. I have truly discovered who I REALLY AM! I dug so deep down and asked myself a lot of hard questions about myself and what is truly important to me. I have learned who my true friends are that loved me when I gained all that weight from the steroids and looked quite different. Those that stuck by my side and encouraged me the whole way through, no questions asked are those that I want to invest myself in and give part of my heart to. There were many that I saw a selfishness in and run when things get too hard for their perfect world. I am not down with those sort of superficial relationships. I have met some amazing people out here in California and love the life I have out here and my group of people that love me from my old job in Montana. These are the people I want to invest my time and friendships with.
I have a prayer request I am just going to shout out there: I have had quite a few ups and downs in my health lately as always and I would greatly appreciate your thoughts and prayers as I try to make commitments to school and traveling. These are such things I really want to start doing. So pray for some consistency in my health that I may take the step on those things in my life. Thanks a bunch (:
Thanks for reading up on me again,
Many blessing to all the beautiful people God has blessed me with.
I am going to make an effort to revive this blog and get it going again. Stepping up and committing to something I know I can probably accomplish. YAY Friends, Let us journey through life together! What a wonderful life we have. I encourage you to take each day and live it to the fullest.

May your day be full of love and peace~ Lyndsay

Friday, December 17, 2010

Thrift Store Finds

A view of all of the treasures
Good brands like Levi's, Old Navy and Gap
Nice Shirts
Adorable Princess Jacket with lining and all
Osh Kosh Pants and Levi's

Lately we have found this Salvation Army by our house that has 50 percent off days every other week. You can find some amazing things there. They are constantly restocking throughout the day, so there are new things all the time. They also have a lot of kids clothes. Natalie has gone through a growth spurt lately and my mom and I decided to check things out to see if we could find a couple things for her to play in. I have had such good luck finding clothes for other friends with kids and this time was no different. We got 5 pairs of pants, 3 of which were jeans. Then one really nice Disney Jacket and 3 hoodies. We also purchased 5 shirts and 3 skirts. All of those clothes for 35 dollars. It was great. I love half off days. It is fun to go through all the racks finding that treasure that looks brand new. That is another thing each item looked like it almost just cam off the rack. Getting a good sale is like getting a good high. It makes you feel all warm and fuzzy inside. Well thought I would share my finds with you and wish you luck on your discount store adventures. Be patient and take your time to scan through racks and you are bound to find a treasure in there somewhere. Happy shopping!!

Natalie's Preschool Christmas Program

Mom, Natalie and her Doll with matching dress
Daddy and Natalie
Natalie and her best friend Skyland
Natalie telling Santa what she wants this year

Yesterday my little niece Natalie had her first Christmas program. I was unable to make it because I don't do well in crowds and mornings are not my thing. My mom went though and said it was wonderful and oh so cute. They sang songs and each one was a Christmas character. Natalie was Santa's little helper, which is perfect because she is a great helper and loves to do it. She was dressed in her Christmas party dress that was red and she looked gorgeous as she always does. Love her to death!!! Good job Natalie, we are so proud of you little miss.