This blog has taken weeks to write this blog. This may be a really depressing for my first post in a while, so if you are close enough to me to already know what all has been going on... just don't read it. I know 1/2 of you probably think I'm still in the hospital, dead, or worse..... captive in a house where almost everything that needs to be done around me I can't accomplish either due to my physical limitations, doctors orders, on the toilet or have my beautiful little girl asking me to play with her.I'm just so slow with everything that as Evalyn gets older I seem to have less time to write. By her naptime, I have to lay down sleep, or call all the doctor's offices, schedule sitters and rides, try to remember what type of medication I have forgotten to take and try to make some money in my booth with my art and items,, that God told me to do...... hello God are you there.... or are your little care bears staring me down with a new diagnosis ???? Yea, lets just say I'm a little angry with God at times and that is hard to admit when I really want my life to be an inspiration to others so at least this hell on earth will mean something. I'll come around like I always do. Everyone that has read this blog, all the horrible and/or wonderful details and prayed for us and supported us didn't deserve a silence treatment from me. And honestly, I don't think it has been healthy to not share and not write it out so that it does become so real that I have to deal with it. All I can say that the last 3 months have been hell and maybe that is why I could not write. . The beautiful times were just that wonderful and I have had many. I should have shared those also. I think I wanted to make myself believe that no one really cared about the details anymore. You know when your in and out of the hospital so much, people stop coming as much or at all. Even people that said they would be by your side no matter what. It just happened... peoples lives continue to move at a faster rate while, as my Granny says, being held together with pills and scotch tape.I do understand, it's a long drive, and when I'm in so much pain I think it's harder for the person watching.
I think I have had 4 hospital admissions since October. Memories in and out of the hospital are not in order and very blurry. I figured if I couln't tell you what month something happened in that maybe I had no business sharing my obvious IQ decline. Now I keep up with the days of the week, the day, and the month using Evalyn potty chart where we put stickers and stamps. How the child will ever get out of diapers as long as I am in them, I do not know.I'm really having to face the reality that this is never going to be completely over. For the rest of my life I will be following up to see if the cancer has returned, if the treatments have given me other cancers, and I will always deal with the side effects of the medications and treatments that saved my life. Learning to deal with this has been so hard. How naive was I to think I would have the BMT and then if it worked I would just be fine. Of course, my doctors knew what could happen and there would be side effects but I agree that giving someone too much information at one time can hinder treatment. Something good that has happened is I have finally gotten some of the weight off that the steriods were causing. I still have my chubby cheeks and budda belly but I have lost 40 lbs of pretty much water weight.
Some things I'm dealing with physically ..... I heal very very slow. I still have wounds from last summer that are not completely healed. I have a wound where my port was taken out and then not taken care of properly in the hospital is not healing well. I have the "port story" that was pretty traumatic that I will tell you here or in another blog. Anyone want to offer you legal advice for free out there? It seems that my osteoporosis increase it rate of chipping away my bone overnight. All of a sudden not only will I need a total hip replacement, knee replacements one day, but I had fractures in my spine, couldn't lift my neck and had to wear a huge neck brace just to keep my head up. I had two surgeries on my vertebra that I'm glad to say worked and I'm sitting up straiter than ever and do not have pain anymore in those two areas. However, although the T7 and T8 are stable at this point my T5 is totally crushed and the only thing they can so about that is pain shots, burning nerves, and major surgery involving rods. Not sure about my neck yet, have to get a new doctor, the last one was a real jerk and didn't even examine me during my 40 visits. The wounds and bone issues of course led to home health and PT to put more layers on a cake that is about to tip over.You never know whenthey are coming and if you miss then, well too bad. And for another cherry on top.....I'm going to lose many of my teeth very soon. Not that I was ever fond of my God given teeth, they have always given me greif, but I didn't expect to lose them in my 30's. My new ones will look a lot better but pray I don't lose them. Someone I'm close to, lost thiers for a while and finally found them in a shoe.
Oh what else.... I still have GVHD, meaning I still have the eye issues which will probably lead to cateract t surgery if I want to continue driving, which I'm just starting to do again, but not far. I get so tired so easy, Jonathan is afraid I won't make it back if I go too far. I'm not too afraid of anything anymore except being useless or a burden on others. I also have GVHD in my gut which means lots of sickness and have add random vomitting to my list of bad things that can and will happen in public places. I have this cough that will not go away. I feel that I have had it since the BMT. I have GVHD on my skin and I'm in my second session of an outbreak and boy does it itch. I have a weak bladder now and sometimes don't get through the sentence of " I gotta go....." Great. Scars.... I have horrible scars, I'll leave it at that. I have a blood clot in my heart that for some reason they do not seem too concerned about because no one has followed up to see if it has change or moved since I have been taking these painful shots each day. Menopause or medication hot flashes are killing me on top of everything else. I will just start sweating so much that the hair I have will be soaked. I'm sure there is more, I'm sure they will find more. It seems that it is very up to me to request follow ups and to be referred to physicians. My main doctor at Emory is a BMT doctor, not a whats going to happen in the next 5 years doctor. There needs to be so much more research in this area. I'm been looking at something that was in Cure magazine the last two months. It's called a Survivorship Care Plan. I would meet with someone and get evaluated and based on tests, what side effects I already have, aging, research, etc we would come up with a plan on how to survive life after Cancer. I know there is a place in Texas, but I have a lot more to learn about all that. I just don't have much time/energy to do it right now, but that is one of my goals.
Personal Life and of Dearly Loved People..... I think I told you about my Uncle passing away. It seems to be most difficult for some that were the closest to him. We could talk about anything because neither one of us had any dignity left and went through the same things. Someone I love is going to prison, someone I love is pregnant and it's not the best idea, Someone close to me attempted suicide someone close to me almost overdosed in my arms, any marriage that goes through something like this, the weak areas are exposed and have to be dealt with or walls will be created, Many people I know are aging and in pain and I want to be able to help more, I don't want to lose them, a family member has had major surgery and been in bad pain with a long recovery, understanding some of how our finances are affected due to medical bills, we had a grandparent pass away, I miss my siblings. I have to rely on others for most everything that a normal 32 year old can do. But is it not hopeless.
There are so many people still helping our family. They are such a blessing and without seeing some kindness and compassion, surly there would have have been a point that enough is enough , smother me with a pillow already if I can not find good in the world. But luckily there has been people who have given us money, let me cry on there shoulder and even pay for cleaning. People are still making us food at times and it is a huge help. Those that have fallen in love with sweet Evalyn Rose are always in for a treat. She is truly a blessing. More on her amazing discoveries coming soon and of course pictures.
Well that's all I have time for now. Thank you for your prayers and support.
Love Heather.
