10-6-2013 – Post 1st Stem Cell Transplant

I got my basic results back for all the tests that were given (all 35) last week and I got 15 more today. The first 35 results showed everything within a normal range and obscure tests with scores of positive or negative, with negative being ‘good’, showed my results all in the negatives. It seems as though ‘overall’ things look good and I am responding to treatment. With the new results, I’ve got a red blood cell count, and a low mean platelet volume… still very anemic, and I still have cancer in my bone marrow (long story short) haha. I started with 40% cancer affecting my bone marrow, and after the transplant, I am now only showing 10% of my marrow affected. I will be checking in to the hospital for my second transplant on October 15. I have mixed feelings about it because for a few days after my biopsy I had some hope that the doctor would call and tell me that by some miracle I was in remission. If that happened, there would be no second transplant and we could at least attempt to move forward in a world where myeloma treatment did not play such a crucial role or pose such a hindrance in my goal of giving the girls a place of their own that they so badly want. I did my best for 3 months and have pushed out all negativity surrounding the lack of success from my previous 4 cycles of chemotherapy. I have spent that time doing my best to better myself mentally and spiritually in efforts to be more balanced. My role as the mother of girls; I have been waging an internal battle with myself, trying to understand what I need to do to make things better for all of them and realizing that whatever is happening is bigger than I can see right now. I live the life where ‘Everything happens for a reason…‘ is a very real and relevant mantra, because I can see the connections in everything… but at the same time, the questions of ‘Why me?‘ and ‘What happened?!’ and ‘How do I change this?!’ still very much resonate deep in my mind on a daily basis. Someone once said that I should be ‘grateful of what I do have because at least I am in a country where they have nice shelters, and I at have friends willing to share their homes with us. It would be a gross mis-statement to say I did not appreciate what I have, because I absolutely appreciate how a fortunate we have been to be able to survive the last 18 months under the circumstances. Never in a million years would I have ever imagined the sequence of events or the timing in which everything occurred and it is shocking I am even still here. But even amongst the amazement and wonder of what I can only describe as multiple cases of divine intervention, and examples that I have a Heavenly Father that touches people I come across and they show me kindnesses that remind me that there is a peace and comfort to be found by looking up and not so much at obsessing over things as they are because when I do, I feel as though the gravity of the uncertainty would make it easy for me to drown at this point. If I am honest with you, however, my situation still saddens me at times, because I am not alone in this journey…and my children that would like answers, comfort, and assurance that things will be ok. Fortunately they have some people that love them and want to provide comfort as well… but they still look to me to ultimately provide it for them. The sadness is not about the size of a house or the fence around it (if it was, I would have stayed in the gorgeous home in Florida)… I just want things that I believe are my ‘God-given’ rights as a mother. The right to raise my children in an abuse free environment, provide for their basic physical and emotional needs whether I am single or not. I should not have to compromise what I believe to be right and true in my parenting style as long as I am seeking wise counsel. I think the world assumes that a woman can easily strike out on her own in the face of abuse, and the state will provide what they need, and/or the other parent will be required to fulfill their financial obligations. Unfortunately, life is not fair, and those expectations are incorrect, and precisely the reason many women stay in bad situations. Being a single parent is hard by itself, but it is manageable if you are willing to work your tail off to provide; but throw a chronic illness in the mix, things become ‘almost’ impossible. It is not always fun living on full display, open to every criticism and every opinion because that is the nature of any type of community living situation. In some ways it has caused amazing personal growth because living a life with transparency is normally something I am comfortable with because I do not have anything to hide (what you see is what you get). It can become disheartening and discouraging after a while, because no matter how hard I work or how far we come, someone always thinks they know me or my kids better than I do. According to some; I ‘coddle’ my children with affection, or I spend too much ‘quiet time’ with them away from the chaos of the world. I am told that I am not preparing them for the harsh reality that they might not have me on this earth very long. My children are doing well in school, they are involved in church activities, extracurricular activities, and they have a couple friends they call besties. I enjoy spending time with them, and for the most part, they like hanging out with me, the more comfortable they get, the more they branch out and I encourage it. I do not keep them from the world, I provide them a safe haven when they want or need a break from the outside world. I do not hinder their experiences, nor do I force them into experiences because this world has more than enough stimulation and distraction all by itself without my adding to their stress. If they have an interest, I try to provide access to it, if they are more introverted, I do not force them to be like me, in fact, I would prefer they be much different and make far better choices than me. When I see it on their faces that the world outside is caving in on them, I do pull them close or remove them from the source of anxiety and show them how to calm that inner fear. I also teach them that if they can lean on each other as sisters (not just me), they can overcome anything. I am also teaching them the utmost importance of faith in our Heavenly Father, because in their world, they do not have an active earthly father. They need to seek their identity in what Christ teaches, not the opinions of men or boys because they are human and will often fail to meet the standards they might hold them too. Having a knowledge of something greater can give them peace, comfort, and power to handle anything else they will encounter, because life is almost never pretty (but they certainly are), and it is not easy. I know that just because I am here for now to comfort them; I will not always be here. I need them to find peace with themselves and amongst each other, so they will be strong no matter who they are around. I tried staying busy with activities as I was growing up to fight my insecurities, I tried to earn my salvation by working and serving others, and allowing others acceptance of me determine my worth and I was always left unfulfilled because that is not living to my full potential. Having a personal relationship with our God, and having ‘real’ relationships with our neighbors but not allowing them to ‘govern’ our lives is a much better way to live. Find your purpose and your passion, but first you have to learn to love yourself the way God sees us, not others around us. I have 9 days left before entering Round 2 of this battle. The last couple of weeks I have spent time holding my children individually as they cry and share their fears about the future. I know I cannot give them the answers they want to hear, so I just try to feel and absorb the pain they feel and offer solace by pointing away from our suffering to the bigger picture that this is all just a blip in time, and it will be over before we know it. If we can see each day as an experience, each new thing as an adventure, and each person we meet as a potential to learn something new… we will be less likely to resist the changes that are happening, and more able to adapt and overcome any uncomfortable feelings. They want this cancer gone, they want to be in our own house, they want to have their own lives, their own space, their own chance to express themselves without fear that they will be misunderstood. When I hold my child as they go through the ‘what ifs’, and tell them that no matter what happens, they will be taken care of, and that mommy is tougher than she looks… and she is going to beat this monster, even if she just beats it down to a manageable level.