Hopes and Dreams

"If you get up one more time than you fall, you will make it through"  -Chinese Proverb
     I used to dream of being a beautiful ballerina dancing on stage, now I dream of just being able to dance again.
     I used to dream of being a rock star like Joan Jett. Now I just dream of singing while I do chores around the house.
     I used to dream of being thin and fit and running 5 miles a day. Now I dream of taking a walk to the end of the block with my grandchildren.
     I used to dream of having a fancy important job, Now I dream of being able to work one day in the future.
     I used to dream of having a bikini body, now I dream of walking on a beach in bare feet.
     
     I used to worry about having a clean, pretty house. Now I am thankful for any help I can get, or even being able to sweep the floor once in a while.
     I used to love to be able to hop in the car and drive. Now I look forward to the day I can drive.

     I used to think I had a lot of friends. Now I am so grateful for the GREAT friends that I have.
     Hopes and dreams can change. Life changes unexpectedly. I am so thankful to be here and I look forward to one day (soon) being able to do each thing listed above. I will forever be thankful for the little moments in life and not take them for granted.
      

 

"Pray like it all depends on God, then when you are done, go work like it all depends on you."

Martin Luther
  You could say that I am an emotional person. I feel almost every emotion everyday. Sadness, frustration, pain, empathy, guilt, helplessness.....  One emotion I don't often feel is anger. It is a useless emotion, and I think my ability to forgive easily helps a lot with this. 
   Well, I am ANGRY! I am seething with it. I can feel it boiling up inside me, wanting to get out. I want to smash things and scream and punch something. Fortunately, I don't have the physical strength for any of that. And I believe this anger will pass, and pass quickly. I don't think I have ever felt like this before. I have always felt that anger is like a blame game. By refusing to take any culpability for your actions, your anger is displaced on someone else.
    So you may ask whom I am so angry at. I am angry at 4 doctors that I trusted with my life, my health, my future. I decided to go with a certain health system which has a good reputation, even against others advice, people I trust more than anything else in the world. Why would I do this? Faith. At the time I had made the choice, and felt that I had to have faith in God and faith in my choice and doctors and all would be okay. Oh how wrong I was. As I have learned all my lessons, I have also learned this the hard. I still believe in faith, I believe in miracles, but as the quote above says, it's good to have faith, but faith without action is like a beautiful car without a transmission. So, well, beyond a shadow of a doubt, 4 doctors left me blowing in the wind. I believe each felt I was the responsiblity of the other, therefore somehow I got lost in the middle.
     So, after all that rambling, it brings me to my story, and why I am so angry. Thank you for your patience so far. As many of you know, 3-4 weeks ago I started having dizzy spells, lapse of memory, loss of balance. All of this led to me to have several falls, one of which I sprained my ankle, and my wrist. My wrist only hurts sometimes now, but I am still having a lot of issues with my ankle. While at the emergency room (not the hospital I had my surgery at) they were more concerned with WHY I was falling and did a battery of tests. They diagnosed me with bradycardia (low heart rate) and said I need to see my endocrinologist within 2 days. That was on Tues, Aug 30th. On Wednesday, Aug 31, I called the endo's office and was told I need to speak with Chris, who (of course) I had leave to a message. She did not return my call until the next day, Thursday Sept. 1. She informed me the office would be closed until Wed. Sept 7th., and to call back then. Are you kidding me? Anyway in the meantime my symptoms only got worse. I began to slur my speech, could not walk a straight line. bumped into walls, continued to fall, began vomiting and not holding down any food, and passed out twice. Also the cramps and spasms in my hips and legs worsened, becoming quite difficult to walk. Not to mention I was sleeping at least 14-16 hours a day. On Wed. 9:00 a.m. I called, got her to the phone only by throwing a fit, she says to me, "well, I don't understand why you are not checking your blood sugar regularly."  I said "Uh... cuz I'm not diabetic" so she says, well what happened to your meter, did you lose it" I said, I don't know think you know who  I am, but I do not see Dr. Rosenblatt for Diabetes, He is treating me for THYROID CANCER! and than thought to myself (dumbass!!!!!). She puts me on hold and when she comes back on she says Dr would like to see you right away so how is OCT 3rd. That was it, I was done!!! I called my PCP and was told by her secretary that I already have an appointment on the 29th and would not be able to get in any sooner.
     After talking to Keith and Mike on Sunday, Sept 11 by which time I knew I was in serious trouble, We decided to notify the hospital I saw for the sprained ankle/wrist and see what they suggest. I left on online request for a phone call at 10 p.m. Well I received a call back by 9:15 the very next morning! Imagine that. I explained the situation and was told I need to find a new PCP first, and together, we found one that seemed like a good fit. Well, my luck, being what it is, his father passed away the day before and would be out all this week so I can't see him til next week. Still better than the others. I still knew I needed to act on my instincts, and decided to call my Bad-Ass Sister who has survived cancer 4 times and takes no crap from any doctor. I asked her to call the oncologist she has used for 20 years as they have such a great relationship. First she spoke with the office manager to explain my situation, and within one hour the doctor himself called her back! He told her If I could not see a doctor the very next day, I am to go to emergency, that I am in a very dangerous situation. 
     My husband took the next day off, I packed a bag and off we went. They were very busy!!!!! We waited 2 hours just for a cubby in the er. again, blood was drawn, a CT of my head from when I bumped it from passing out, chest xrays, an ekg. And then the waiting. The thyroid tests take forever, and came back that my TSH (thyroid stimulated hormone) was at 207. On June 13th is was 27.5. A  normal level is between 0.03 and 1.7. I knew I was off the synthroid to go hypo, but no one kept track of me, I should have began treatment sometime around 80. I was told I was myxedema, and very close to a myxedema coma. It is a very dangerous state, often fatal and almost always leads to permanent heart damage. They were able to get a hold of my sisters oncologist who is seeing me tomorrow, and he said to put me immediately on the highest dose of sythroid. How can well trained well experienced doctors allow this to happen? How can a doctor I have never spoken to but has cared for sister for so long step in and care so much about my health, even though he has never met me?
     I have learned a great life lesson, though. Faith can move mountains, Faith can achieve great things, but we must not have blind Faith. We must play an active role in that Faith and trust ourselves as well, after all, that is a form of Faith as well. We must use all of our resources, even if that resource is your Big Bad Ass Sister! 
    I may not be able to have Radioactive Iodine Treatment. Going hypo in any way now will be too dangerous, so we must come up with a Plan B. I don't know what is in my future. I am sure there will still be many bumps, but For the first time in such a long time I feel I have people on my side, fighting for me. I am so glad I just didn't sit back and wait because would have had tragic results!

Chrysalis/Changes

“Life can either be accepted or changed. If it is not accepted, it must be changed. If it cannot be changed, then it must be accepted.”

     As any of you that have followed my blog at all know, My life has been through many, many changes over the last 6 months. So many that I don't even recognize it anymore. But, if you recall my first post, and even the quote I keep at the top, this blog is about change, finding my bliss, and how to stop chasing butterflies, allowing them to come to me. 
     I know that I have had a very difficult time emotionally, I have lost faith and hope and was ready to give up on so many occasions, and that was definitely not the way in which I expected this blog to go. But those were the feelings I was having at the time, and putting them in writing was healing and cathartic. But over time I have come to realize that it was necessary to go through all that I to reachmy final destination.
     I also have made some huge realizations as of late. Despite past postings, I have never been alone. Also, the Aztec Warrior Princess I have been searching for has been inside me all along, lying in wait until I was ready for her. And my angel, whom I picture as my mother never deserted me, at times she would sit quietly allowing me to find the strength and character within myself, and perhaps so that I could learn, as Psalm 46 says "Be still and know that I am God."   
     I am healing emotionally and spiritually, even as my physical health is failing. Where I was having 3 or 4 panic attacks a week, I have only had three in about a month. I still have my bad days, but they are becoming farther apart. I will be doing something and suddenly realize I haven't cried in a few days. I find myself smiling and interacting more, and even laughing here and there. This is such a long way from where I was. I have not shared this with anyone, not my counselor, not my group, not my psychiatrist,  mostly for fear of being sent way, and this has been eating me inside out, and I need to rid myself of it. At my lowest points, when fear and loathing and despair had overtaken me, I had an overwhelming need to hurt myself. Not suicide, not a serious injury, but would dig my nails and scratch my arm so badly I would often bleed, and today I am left with many scars on my upper left arm. And once I took my "honeybee" scissors which are razor sharp scrapbooking scissors and had them pressed to my arm ready to carve "help" into my arm. At that moment I believe my mother came to me and held me until it passed. I have not tried since. I have also cut my fingernails very short, and a very dear friend bought me a beautiful cross called "a clinging cross" and it is designed to fit just right into your hand for comfort and solace. It is now the first thing I reach for when I become upset. Instead of dwelling on the act of hurting myself, I realize that all of the acts I have taken since, are steps toward healing. Cutting my nails, clinging my cross, choosing not to keep this secret any longer. So you can see why I felt as if I was alone and frightened in such a dark place.
     So as I heal from all of this, my physical health is failing. The dizzy spells are getting worse, I have been vomiting, alot, I am sleeping 14-16 hours a day. My muscles spasm and ache all the time, especially in my legs and hips. Even a tiny task, such a quick trip to the grocery store is overwhelming. The thought of walking to the back of the store for milk or eggs causes my chest to squeeze and makes me want to lay on the floor right there and give up. But I DON'T! I slowly walk to the back, get what is needed and check out. Also progress. I am used to physical pain, I have lived with it for a long time. Enduring physical pain is a walk in the park compared to the emotional ride I have been on. I also know, that once I receive treatment for the cancer and get back my medication I will slowly gain my strength and health back.
    Also, during my lowest times, my family was facing so many crises that I did not think I would make it to the other side. But as life goes on, changes become normalcy, life goes on and people adjust. I did not think my family would ever be the same with the separation of my son and his wife. I did not want my grandchildren to endure it, or feel sadness. But as they have adjusted, and settle into a new routine they are happy, and thriving. They know they are loved and safe with both their parents. They have two sets of Grandparents that add to their care and ensure they know they are loved. Their aunts and uncles on both sides take time to spend with them. I have seen my son smile the most since he was in high school. This is not an attempt to lessen his marriage in any way, I believe Mike and Kara loved (love) each other very much! But sometimes that is not enough. We are spending more time with Mike and the kids than ever, and our family has grown closer.
     When we were told we needed to move because the landlord wanted to put the house on the market, I did not think I could face a move. I was too exhausted. But we have moved, we are almost settled, and once again what I thought was tragic and overwhelming has been a positive change. I feel as if I have left so many bad things behind in the old house, and I am able to face the next stage in a "clean, fresh environment" I have issues with feeling safe. More emotional than anything. My "safe" place at that house was a small space behind my dresser, nearly into my closet. Here I have a bedroom that feels like a sanctuary. It is cozy, painted the perfect color purple, has a door wall that looks into a peaceful backyard, and I have hung all of my angel pictures which are so comforting to me.
     I guess the moral to this story is as difficult as it can be, change can be good. Change can be healing. Change is inevitable. My life is evolving, not like I thought it would, but as I see now we don't always know what's best for our future. And for the first time in a long time, I see a future. And I have also realized, that I am not chasing butterflies, I AM the butterfly, waiting, changing, transforming in my chrysalis, waiting until I am a fully developed butterfly. Maybe not perfect, maybe not quite whole, but changed. Survived. Ready to fly and move on to the next stage of my life. Thank you all for taking this crazy ride with me.

     

Thyroid Cancer/Hypothyroidism

Life is not measure by the breaths we take, but rather by the moments that take our breath away.

     This has always been my favorite quote. It was the very first thing I thought as I held my grandson 15 minutes after his birth. That day changed my life forever. I also believe my grandchildren have saved my life more than a few times since my health began to fail and I was diagnosed with Thyroid Cancer. I write a lot here about my emotions, but today I would like to speak about how Thyroid Cancer has physically affected my life, and talk a little about how serious and complicated a disease it is. It is certainly not the "piece of cake" I was lead to believe it would be.
     I would like to begin by saying it is considered "the good cancer" because it has such a high survival rate. What doctors fail to tell you is all the things that could go wrong, as well as that is requires care FOR THE REST OF YOUR LIFE!
     So this is what has happened to my body since February. Of course a great fear overwhelmed me because it was "cancer" and acceptance took a while. So I had to prepare for surgery on May 6th when they took my entire thyroid out, as well 8 lymphs. The prognosis was good, but wait...... first complication. I fell into hypothyroidism so quickly that after only 5 days I was told treatment would have to be postponed and I was to go back on meds immediately. So the summer has been spent having blood taken, Drs. appts. and waiting. In mid July I was taken off the sythroid in order to prepare for treatment. By treatment I mean Radioactive Iodine Treatment, something most people have within 6 weeks of surgery. I have of course had all of these emotion issues which seem to be semi-controlled by medication. Now because of being hypothyroid I feel my body is failing me. It started out as lack of energy and leg pains and cramps. While moving, I really pushed my body beyond it's limits, which led to dizziness, stumbling, unsteadiness, loss of concentration, and some days an absolute inability to stay awake. All this has lead to several falls. On my last fall, I sprained my ankle quite severely, and sprained my wrist and they thought my thumb was broken, but it is not. My ankle is bruised from my toes, half way up my calf, all around.
     I am no longer able to drive. Of course the ankle pain, but my reflexes are slow and I find myself drifting or making slow decisions. Sometimes I sleep for 12-14 hours a day. Somedays I slur my words and sound drunk. My heartrate is low, between 50-60 bpm and my core body temperature cannot rise above 96.8. Any small task can cause me to run out of breath, or feel as if I may pass out. Even as simple as sweeping the floor. I will know soon if my body is ready for my RAI but that whole process takes takes 3-4 weeks, and I must stay off my meds during the whole process.
     This is what I have ahead of me. First a two week low iodine diet in which there very little I am able to eat. The idea behind this is the less iodine you have in your system, the more of the radioactive iodine you can absorb. After that I will go to the Nuclear Med Dept for a shot to prepare for a whole body scan. The next day I go back and they will determine if any thyroid tissue or cancer has spread anywhere else. If I am lucky, the will decide that day my RAI dose and give it to me that day. Then I must stay at least 10  feet from all family members for 4 days and children and pets for 7. If I pee, I must flush twice and wipe the seat. My clothing and bedding must not be washed with anyone elses. I must use throw away plates cups and silverware. Any magazine or books I read must be thrown out when finished. My body will actually be radioactive to others. Afterward, they will do another scan to make sure it is all gone. If so, then I can go back onto synthroid, but it will take time to get the dose just right. After that I should begin to feel better, but will have to be monitored for the rest of my life. Many people have gone through this. As long as I can get through the next 30 days, it will not kill me. I am in the dangerous stage now. But I do look forward to my future, despite my occasion rantings and breakdowns.
     It is getting more difficult to speak as well, my voice is very raspy and tires easily. I have pain and cramps almost constantly in my legs and hips, I have trouble making decisions. These are the things I ask that you pray for that will go away after treatment when I am back on meds. Thank you for letting me tell my story, it is so healing to get it out, purge if you will.