Positivity…

Negative attitudes, thoughts and words bring negative and unhappy moods, actions and lives. When your mind is negative, poisons are released into your blood, which creates more negativity and unhappiness. This is the key to failure… The key to success is of course simple…POSITIVITY… This brings happiness, health, joy and a successful outcome to every action and situation. Quite simply put, whatever the mind expects, it finds!!!

Bone Marrow / Stem Cell Registry – Please read !!!

PLEASE TAKE THE TIME TO READ THIS POST!!!

I know I tend to write novels, but this is very important and I am trying to help as many people out there as I possibly can through my experience right now. For those of you that know me so very well, you know I always try to find the positive in any negative that exist in my life. This is the positive, so please, please please read and help me turn this negative into a huge positive in the lives of others…

I am asking, I am urging I shouting out from the rooftops as to the importance of ANYONE and EVERYONE registering with the bone marrow registry. It’s free and you can truly save lives. I am not asking on my own behalf. I truly believe we will find my match within my family, and if not that the worldwide database will have a match that we be blessed with. I am asking for others, because 70% of the database is compromised of caucasian donors. 70%… That leaves only 30% donors that of other races, and moreover the hugest shortage is people with mixed races. As I have one of the largest most incredible melting pots of friends of all different races and 90% of them being mixed races, this hits home for me all the more in concern for others all over this beautiful world.

They type of cancers I have can happen to anyone. The stats show its generally men, of african american decent and in their 70s and 80s… Obviously I’m not any of those things and yet here we are. MDS also occurs in patients who have had chemotherapy and/or radiation from another cancer battle. I never underwent chemo or radiation. And apparently it happens to people who’ve been exposed to an atomic bomb. Ummmm another thing I don’t recall being exposed too, but maybe I missed it… Multiple Myeloma also generally effects the older populous… and AML, well 1/3 of MDS patients develop AML… So here we are…

Everyone needs to advocate for themselves. I have been trying to get answers about my health for some time now. My white counts were coming back lower 2 years ago and we pushed and pushed in Maui to get answers and everyone said nothing was wrong and not to worry… It wasn’t until a lot more flags flew up that people started doing something about it. I have been fighting the symptoms for so long, and kept hoping I would get better. Instead organs were changing, things were showing up like a second spleen and enlarged kidney which was termed as an extra one. lol. All the while being told these are genetic defects, but I hadn’t been born with them at all, and they weren’t there a year ago. Thankfully we have doctors that looked at the WHOLE picture and not just one thing here, one thing over there, etc… The bone marrow biopsy and FISH tests were so critical in all of this. And although that Doctor sucked at everything that followed them, we’re grateful for her ordering them to begin with. She served her purpose in doing so. She is a colon cancer and breast cancer Doctor, hence why she had little to offer in the case of Blood and Bone Marrow cancers. There’s a reason Docs specializes in different areas, and this is one of them.

I keep being asked by people how I got this. How does anyone get any type of cancer? Does everyone who smokes automatically get lung cancer or throat cancer? Not so much. I would know on that 15 years ago as well. No one knows why. We all have our speculations and thoughts on cancer and the fact that soooooo many people have some form of it another nowadays and at such younger ages. Foods we eat, our environment, there’s so many things that are thought and factored in… We eat organic foods only – well 99% of our foods. We have little things here and there that aren’t, but have eaten this way for years. I don’t eat anything with preservatives, hormones or chemicals in eat. My body doesn’t tolerate well to begin with. CDiff taught us so much about foods and what our bodies responded too, as Matt lived it with me in so many ways, each day.

We believe like CDiff which we had never even heard of before I got it, and because of getting it, I had the ability to learn so much about it and help others through it in sharing my story. Well now it’s MDS and MM- AML everyone knows about- leukemias most of us are familiar with, but how many of you had heard or MDS and Multiple Myeloma? How many of you have had it or know a loved one who has? How many of you have been saved by a stem cell transplant or known someone? We didn’t know anyone first hand with any of these things till now. A dear friend of ours, his Mom has Smoldering Myeloma and was the first I learned of such when my tests started coming back. I still to date don’t know anyone first hand or second hand with MDS… We’ve done all the research, and feel like we’re friggen Docs in this field already. So you can bet I’m gonna do all possible to help anyone possible. And just like I became the poster child for POOP with CDiff, I will do the same with Stem Cells for Blood and Bone Marrow Cancers. If everyone I know gets in the database, just think of the lives that can be saved. Of no risk to you? You don’t need to go under anesthesia. You don’t need bone marrow removed from your spine. It’s just an IV. Your blood is extracted and runs through a machine that filters the stem cells out and then your blood is put back in… This is all that you need to do. You have a brief injection usually the few days before the blood is given to help stimulate your cells for more production. The most anyone ever experienced was feeling flush for up to 48hours. All this and people LIVE!!! People have HOPE to LIVE!!! And there is no guarantee you’ll ever donate, getting tested is free. It just puts you in the registry worldwide to be a match for someone in need RIGHT NOW or SOMEDAY.

Please everyone I am asking you to think about registering. It costs you nothing. It’s a simple swabbing inside your cheek… If not stem cells/bone marrow, then consider donating your blood and/or plasma. It’s something that a great deal of the population can do, and it truly makes a difference. A lot of people can’t donate any of these things due to their own health issues. But we all can share posts like these or advocate to help others be reached and give if they are healthy enough to do so. I like so many of you know we all have battles we’re fighting. I am no more deserving than anyone else out there. I cannot ask you to do this for me, but I can ask you to do this for any being in this world. Please at least think about it. It’s so important, and yes it’s my way of finding some positive in me going through this all personally. If one other life can be saved because of these blood drives, and registry sign ups, donations of blood/plasma/stem cells/bone marrow, then the silver lining is there and this all somehow makes sense…

Cancer sucks. All disease sucks. Pain sucks… Death sucks, esp when we aren’t 100 yet. So many lives are lost every day, and nowadays I don’t know a single person out there who hasn’t known and loved and lost someone to cancer, or knows and loves someone fighting that battle or just as hard a battles every day. Thank you all so much for reading this post and for considering the difference you can make in others lives.

Registry website———-
https://bethematch.org/support-the-cause/donate-bone-marrow/join-the-marrow-registry/ in registering you are anonymous and need to be willing to match anyone in need … there are people in need right now… there will more and more every day, please help!) For more information please go to the site for health and age requirements.

I know a lot of family members have asked about learning if they are a match, since the process is a little differently. The registry is free, but anonymous and private testing for relatives costs $195 and kits are sent directly to you 2nd day air and results come back a little quicker, they say 3-5 days after receipt… A relative match is always the first choice because of less chance of rejection according to the Doctors, but if we don’t have a relative match they check the worldwide database for the best possible match. Believe it or not it’s only a 25% chance of matching a full sibling and all other relatives, including parents, children, aunts, uncles, half siblings and such are only a 1% chance of being a match. Parents and children have what’s called a chance of being a “half match” they can match 50% of the recipient cells. The goals is a 100% match, but if there is no 100% match for me in a relative or the registry then a half match would be our next and only option. Only 5 centers in the US will perform stem cell transplants on half matches. MDAnderson Stem Cell Transplant Center and Mayo Transplant Center are 2 of them and who we are working with…

I don’t want everyone spending the money for the private kits to be honest and limiting the possibility to only myself to be helped. SO please just use the registry and save anyone that you can. Family, like my parents, they are above the registry age requirements, so the only way for them to test is through this option, which is the only reason we’ve included that info and will send privately to them…

Thank you all so very much for taking the time to read this. Please help me to be able to help as many people as we possibly can. Help this be the HUGE positive that comes from all of this. Together we can make such a difference.

In the most difficult of times you really do get to see the best of people…

Through challenges people rise up, offer so much of themselves and would do anything to give their strength or whatever possible to help. I have never been a person who values or bases who I am on that which I have, on things… I have always based who I am more so on how I live, the heart I share, and on the beings my life is filled with. I am one of the wealthiest beings on this earth because of the people in my life. I am so appreciative, so grateful and so blessed because of you all. I have never needed a wake up call in my life, not really. Some people say that when they get into an accident, or get an illness that it changes their way of looking at life. I have always kinda been this weirdo positive person… well other then some darkness in my teens haha. But throughout my adult life I’ve always lived 100% from my heart. Doesn’t mean I’ve always made the right decisions, doesn’t mean I’ve never screwed up… I’m far from perfect. lol. But I have always lived, striving to better myself, to be a kind person, to be compassionate and full of empathy, regardless to whether I know what’s happening in other lives, to always try and understand what others may or may not be going though and listen as best I can, and help in any way I can…

Through this next journey I see so much amazing that can and will happen. Through my path, others will connect to complete strangers, lives will be saved, lives will impacted and change for the better. I have always believed that everything no matter how little it might make sense has a positive or many positives in it. Cancer sucks ass and I won’t pretend to like feeling so sick every day, having no energy whatsoever, anymore than I like being in pain every day… I have my days, trust me… Everyone once in awhile I can admit out loud that I miss my leg. Or that it’s exhausting living in pain 24-7. Or that most of all I miss feeling like me… You know that crazy, outgoing, energizer bunny girl, lol. Butttttttt I have to believe it all has purpose, as we all have purpose. I may need a solid recharging of my batteries, hell I need new batteries, let gets real… haha…

Seriously though, all that being said, look at your life, look at the blessings you have, and know whatever your struggle, it’s worth the fight. There is no greater gift in this world, then life itself. Every single day miracles happen, blessings happen, love happens. Never take yourself or any other for granted, and if you do, choose today to stop. Every day that you wake up is a chance to be the change you wish to be in this world, to do more, to be more, to give more… We weren’t put here to serve ourselves. I am beyond blessed that in this crazy all to often “it’s all about me” kinda attitude so many have, I am surrounded by people quite the opposite. People who believe in love, honestly, faith and helping others, simply because they can. Where I may lack the greatest of health, I have the greatest of wealth in love and loved ones… and in that love I will heal, I will fight, and I will do my best to make the best of everything in this life… Thank you all so much for all that you are in this life and in our lives… You will never truly know just how much it means… Ok sorry super mushy moment…

Wishing you all the sweetest of dreams this evening and may you awaken tomorrow to the true realization of just how wonderful you are and this world is, and even more so how much better we can all make it, together!!!

Stem Cell Transplant Route ?

Ok….Soooooo much to update… We’re still absorbing it all…

My diagnosis have been confirmed with 6 different doctors… so we have no questions there and fully understand….

We’ve known since the biopsies and FISH tests obviously that I am fighting blood/plasma/bone marrow cancers… I have very rare types of cancers that are almost unheard of in people my age, especially the types and severity. When I was first diagnosed off the biopsies I was in the middle stages, or so they thought (my first Doctor)… All other Doctors agree that was inaccurate. Now I am being told that I am in the highest stage, with the worst prognosis because I have a specific deletion of my chromosomes in the MDS that doesn’t even equate to 1% of cases. According to our newest Oncologist/Hematologist the other cancer thankfully can be treated with the same route that they’re recommending for the MDS and that is via stem cell transplant. There’s a WHOLE lot to this. High Dose Chemo/Radiation- but only right before doing the actual transplant. Lots of things in the prep and even more thereafter. I would be in the hospital if all goes well for the first month. Then the next 100 days are as critical, but you are allowed to be at home, or stay somewhere within 30 min of the Stem Cell Transplant Hospital. Visits are every day of the week during the first 100 days. And then tapers down thereafter during the next year. It takes more than a year for the immune system to adjust to what becomes “my new normal” body. There is a lot risks involved because of what can happen to your organs, rejection of stem cells, and so on. Hard to explain it all. Risk of death from transplant is 20-30% and increases based on certain other health factors depending on each patient. Success rate of this being a cure, and not just a treatment for me run 40-50%…. Numbers might now sound awesome to you all, but here is the flat out reality… Without attempting this cure, even if I try all the possible treatment routes available, the most I could do is look at having 2 years of life left, and with very little quality of life because of the treatments. Chemo/Radiation/Meds etc, they don’t cure MDS, AML and Multiple Myeloma. It’s just not something that happens. It can just help buy a little time. Because it’s in the marrow, blood and plasma cells it’s just a little harder to attack. But now we have something we didn’t have before, and that is Doctors who believe in ME and believe in what I’m capable of and helping to advocate for me. We have a plan. It isn’t a perfect science. What is? Life has risks? But the 40-50% chance that this could actually wipe this crap right out of me and should we not find another, safer, better route, then it’s a risk we’re willing to take to stick around in this awesome world.

This is the exacts from the Doctors sites and research from cancer.org… and this is just the MDS, this doesn’t include the info for AML and Multiple Myeloma… The life expectancy of patients with MDS also depends on the type of MDS. The mean life-expectancy is 18 to 24 months in mild cases of MDS or longer when stem cell transplantation is done. Mild cytopenias, low blasts and normal chromosomes have this range of life-expectancy. On the other hand, patients with severe cytopenias, chromosome abnormalities have a mean survival time of 6 to 12 months. (I have more than 4 chromosome abnormalities that we know of already which places me in this last category….) I don’t know about you but 6-12 months doesn’t work for me at all? lol.

Soooooo of course we have a lot more to do to have this happen. Number one insurance stuff all has to get handled so they can get approval to move forward. Then it’s finding my match. A direct sibling is the best chance at a match… Second they go to the Stem Cell Transplant Database, and I have a good chance at a match there if I don’t have a direct family member match. If family and friends want to try and be a match but aren’t a full sibling, they can’t only get tested to match to me. They have to be willing in getting tested to be a match to a stranger as well, if they aren’t a match for me. It’s how the database builds up and lives are able to be saved. I spoke of this before in letting everyone know what wanted to donate, to please do so in general and not just for me. The likelihood that a total stranger could save my life is huge. The likelihood that you can save ANY life is even huger, so let’s do this. If all my loved ones are out there donating and saving others lives, it just helps the world on so many levels. And for anyone wanting to know more, please know you do NOT get put under when donating. They don’t take from your bone marrow and inject your spine, lol. First off to get tested all you do is a simple cheek swab. If you end up being a match to someone, then you have a few simple injections in prep (worse side effects are feeling flush for up to 48hrs)… The process removed blood from an IV set up… It then runs through a machine that filters your stem cells out of the blood and then your blood is put back in you. That’s it on the donors part. Way less complicated then it used to be. No pain, other than getting the needle… Old school donating via bone marrow from your spine leaves less risks for the recipient, but always had anesthesia risks for person donating… this deterred a lot of people from donating. Now you aren’t at risk, you don’t have to be put under and you give the greatest gift there is in this life to another, and that is the gift of life!!!

We are remaining very positive that I will have a match and this will happen. Timeframe right now is that this is all starting now in the process. I’m already doing a ton more tests and starting the regimen I need to follow. The whole process in getting a donor and all the tests that take time to make sure people are a match and such take a bit… so we’re looking at 2 months if it’s a direct family member match and 3 months if we’re going through the stem cell data base… My blood work is continuing to monitored very closed, and often, and if we see a quick drop at all, then the gas petal gets stepped on and we do this even sooner. So we’ll just see what happens.

Doc says that although part of this is such chronic fatigue,and being sick daily, I have to fight through it more and get more active. I have to get in the best shape of my life to prepare for the transplant and be ready for what the chemo/radiation will do. Thankfully it’s not long term on that stuff. It just has to be done to lower my immune system to avoid rejection and to try and rid as much cancer cells from my body as we can, before putting new healthy stem cells in…

Biggest thing right now is getting a thumbs up from insurance, which I just switched to blue cross blue shield effective August 1st, since I was on United Health Care and they won’t work with the clinics well on transplants. So in the meantime we’re doing the needed tests and blood stuff with UHC and then in a couple weeks they can start working their magic with Blue Cross/Blue Shield and start setting things up… Just knowing if my antigen would match a full sibling takes a couple weeks as it is. SO by the time we have that info my insurance will already be changed over. So can’t complain. Being self employed has always made the insurance aspects a little tougher, but we feel confident this will all be possible. As does our Doctors. Even though it’s not the norm for me to have these types of cancers at my age, being female and being white… lol. But my age is working for us in being a candidate for the Stem Cells Transplant. All my little issues with the kidneys, bladder etc aren’t an issue… It would only matter if I was on dialysis and I’m not. My liver is strong, my heart is strong and that is crucial. They will be thoroughly testing them to be sure as well.

We will keep doing all the good natural routes that we’ve been doing too. Not changing any of that. The healthier I can get, the better chance this has at begin successful. Everything will work together :)…

So there ya have it…. I know everyone’s been waiting for a solid update and we had to wait till we really had a game plan first before we could share… For now this is the game plan… We’re going one breath… one step… one day at a time…

We would like to thank you all for all of your prayers, positive thoughts, blessings, support and love. Means so much more than you know. I will beat this. I will more than beat this. I am not naive to all that it’s going to take. It makes having my foot and later leg amputated look like a walk in the park… but because of this, I will have a chance of actually walking in the park again lol. Right now every little thing I get exposed too gets me so damn sick. And it sucks. Now I just have to get my crap together and get in shape. I have never been more motivated to do so in my life, honestly. And I will find a way to combat the fatigue and show my body who is the boss. lol.

Life, love, people… Worth the FIGHT!!!

July 10th fight for the post

Keeping a very positive attitude today. Not setting expectations, but am filled with hope for more answers, more knowledge, more info and more options. Seeing some of the top recommended Docs who specialize in the very rare type of blood/plasma/bone marrow cancers that I’m dealing with. We’ve rec’vd a few opinions already, but haven’t found the right “FIT”…

I don’t need a Doctor who pretends to care about me. They don’t have to, that part is ok. I do need a Doctor who has a desire to want to help me get well. I want a Doctor who doesn’t tell me it would be better if I didn’t do the biopsy and know the cancers were there, since there’s nothing I can do about it. There is a lot in this life I can accept, but I WILL NEVER ACCEPT DOING NOTHING when it COMES TO EVERYTHING.

This is my life. And I will fight with every ounce of who I am to stay in this amazing life. We all die. That is a reality. We are dying the minute we are born… It’s about the living we do until that time comes… I have a lot of living left to do. Welcoming any little bit of positive that you’d like to share from yourself and your day. Prayers, good thoughts and vibrations go a long way. Wishing you all a very beautiful and blessed day. Whatever your difficulties, don’t loose site of the blessings, ever… The blessings are what make the difficulties worth triumphing over… Love you all.