Time for some reflecting!
Sunday, January 13, 2013
Well, today as I was preparing and doing my platoon duties, I have also done a lot of soul searching. I'm not sure why God continues to bless me so, but I am grateful.
On last report in with my oncologist, I am proceeding as well as or better than it was anticipated that I would. I can barely wait for my next month's appointment to see how my blood work has been doing the past few weeks. I just love that I am getting to be seen here locally instead of having to make a 3-hour drive to Kansas City and back.
The goal is to get me well enough to go back to KU hospital in KC, and have the benign tumor removed from my brain stem that has been growing considerably in the last 6 years. If I don't get it removed, one of these days I may lose muscle control and not be able to take care of myself or even be able to walk. So I am making getting healthier a priority in my life right now. Hopefully, the leukemia will go into remission and then I can have the surgery (although it is a very delicate surgery).
I am also waiting to hear the results of the rest of my siblings testing to see if any of them will be a match for bone marrow transplant in the future. It seems as though the doctors are wanting me, if at all possible, to have the brain surgery completed and me back on my feet and doing well again prior to the transplant. So, yes, I have a lot on my plate right now. One brother is not a match. It is my understanding that the chemo therapy should take me into remission but the only way I can even hope of a cure is by having a bone marrow transplant. (Incidentally, the benign tumor on my brain stem has absolutely nothing to do with my leukemia except that the leukemia hinders getting the brain tumor removed even though is need to be, and the brain tumor is a concern to all the doctors including my oncologist in case I should need a spinal tap in the future--as it stands right now a spinal tap is out of the question unless it is a matter of life or death as it could cause the brain tumor to cripple me in an instant.)
However, through all of this, it is my plan to stay as positive as I can, to exercise when and as much as I can (right now am recovering from a broken toe due to fall on my icy front porch concrete steps), so it's almost going to be like starting over for me. I have tracked my food to a certain degree but not been dedicated to it since getting out of the habit while being so ill. I have done so little intentional exercise since becoming so ill as well. But too shall change.
My goals at this time for SSS are:
1. Track all I eat.
2. Try to maintain between 165 and 169 p0unds where the doctors are happy as they do not want me "dieting" right now but I do have some limitations on what I can eat--just not how much. A nuetropenic diet is a real pain but if it keeps me alive and well so be it.
3. Get busy exercising where and when I can for at least 20 minutes x 5 days per week.
4. Do my best to encourage and support my teammates for the next 12 weeks.
5. Keep my sense of humor alive and well, keep a smile on my face, and remain gratefulness in my heart.
6. Drink more water. I am pretty much limited to water or weak tea (never did like full-strenght tea). I like a little lemon juice or lime juice in my water for a change of pace, but I do love my water these days. I just need to drink at least the 8 minimum cups per day and I haven't been succeeding at that the past week or so.
Anyway, I am ready to put on my fatigues, stand up straight with shoulders squared away, and march right into this next round as any good soldier would.
Here's to us, our team, and may we do well again this round.
Last, but definitely not least, a big thank you to my team for caring and being so supportive! I love you all and I want to also say thanks to everyone who is wearing the orange bands showing their support.
And thanks to all our leaders for making this team a good one--I appreciate your hard work.
Member Comments About This Blog Post
I'm so happy that God keeps blessing you. I will pray that one of your siblings is a match and that everything goes as it should and you are happy and healthy and whole at the end of this journey. HUGS. Incidentally one of my husband's friends was diagnosed with lukemia when he was young..like 19 or so if memory serves me. He had one sibling and that brother turned out to be a match. They did the bone marrow transplant and everything is great. He is just fine. No more lukemia. So, there def. IS hope for a great outcome for you as well. He's probably 30 now and is married and they have one child. Life is good. God is good. You hang in there. You're a very special and kind person. hugs!
1582 days ago
You are in my thoughts and daily prayers. I really admire your strength to carry on and do your best. Especially the way you're so positive all the time and never ever complain. My Mom has kidney cancer and an orange bracelet also symbolizes it. So instead of wearing two bracelets, I just wear one in support of you both. I hope that one of your siblings will be a donor match.
Thoughts and prayers are continuously being sent your way.
I Love You!
Love and Big Hugs
1589 days ago
Comment edited on: 1/17/2013 2:13:47 AM
Juanita- what an open and transparent set of words from the heart! Thank you so much for sharing that with us! You know your Sapphire sisters are soldiers ready to fight with you!! You are in my prayers and thoughts constantly! I'm so glad you're with us again and am so glad to hear these updates!
1590 days ago
1592 days ago
And I'm squaring my shoulders to stand with you. I don't know you, have never come across you on sp before, but reading this blog I am so humbled by how you are facing your health challenges. I've just prayed for healing for you - for good results re. bloodwork, and the way forward for your needed surgery.
Blessings on you today, Sapphire Soldier!
1592 days ago
My best bud, NIMAWEYGH, who just joined the Soldiers this Round, let me know of you. I battled Leukemia in 2011- an unwelcome "Happy New Year" present on 1/6/11, found by a routine blood test. I had no symptoms, and never ended up having any before treatment. I couldn't believe I actually signed up on that freight train to you-know-where, without feeling physically ill. But the tests and biopsies showed almost 50% bad cells. I was stunned, stressed out, scared is too mild a word, and felt pushed into treatment by family members.
It was AML, and I was in the the hospital for a total of 4 months that year. (1st round of chemo failed completely, so I spent 55 days straight in the hospital without going home for the 1st 2 rounds of chemo.) I went home April 16th and didn't know how to be home anymore. I cried often. I had a wool blanket that had "pilled up" over the years, and I spent day after day pulling the pills off, and sitting on the couch. Ugh! I was crushed inside and out.
I went back each month for the follow up weeks of chemo, and then 1 more time where I had 1 week of a bad fever that was an out of control virus or infection. All I remember was curling up in pain and moaning for 2 days until I started to get better, being pumped full of antibiotics. The things our bodies are subjected to with this "cure"!!
My only brother wasn't a match for a bone marrow transplant. He was afraid to tell me. I was relieved he wasn't. I didn't want him to go through the "needles" for me, (He fainted during the blood test, for the love of God!), and I didn't want him to feel responsible if I didn't make it. I gave his 3rd daughter her big 16th birthday present I had been planning for 2 years early, on her 15th birthday, cause I wasn't sure... She sobbed in my arms. Our family was hurt. Cancer hits hard.
But sweetheart- there was a match for me. A 23 year old woman in Germany was my match. You see, over there, they all get tested for the bone marrow registry, as part of their regular physicals (I think when they're 18), and they can choose to donate or not, if they come up as a match. Wouldn't it be wonderful if we did that here? She was a 10 point match for me- and even had the same blood type as me already! (and did I mention I am of German descent too?)
I went in for my transplant in July... and oh my Lord... had the worst round of chemo yet. My fledgling hair that had regrown over the months to about a 1/2 inch, was again wiped out in mere days! It was that strong and awful. (Brace yourself.) They flew the white cells in from Germany in a... you guessed it! A cooler! And pushed them in through the port. (Also a nauseating experience.) Ask for the drugs to knock you out if you need it! Don't suffer, don't delay!
So about a month later, right before my 43rd birthday, I went home. It hasn't been cake, and after a year and a 1/2, I still get tired easily, I'm a little PTSD from the whole experience yet (I found a good therapist in Jan 2012), but I have had no GVHD, and I'M STILL HERE!!
And I'm praying for you. You have another friend today. I hope and pray you can get that tumor taken care of and find your match, whether it be one of your siblings or someone from the Registry. I'm also familiar with having several major medical disasters at once, as I also had/have MS prior to the leukemia! (When it rains, it pours, you know?)
Don't give up hope for this all to turn out well. You can get through this and start a new chapter in your life. It is a long road, but one you don't travel alone! I was lucky to have my Mom, husband, and even my little boy (who was 5 at the time), lift me up, as well as many friends- some right here from SP. Please come talk to me if you want to. Share your story with me... if you are up to it. I would love to help any way I can, even if I can just be someone for you to ask questions. Everyone that goes through this recovers at a different rate... so don't let me scare you further, if my "little tale" sounds like a horror story. I won't lie, it hasn't been easy, but by now you know that too.
I am thinking of you.
Yours in BLC friendship,
1592 days ago
Juanita - We are standing with you through this. I do hope one of your siblings is a match for the bone marrow. Anything you do in a positive way for your health (mental, physical, spiritual) is a benefit and progress on the journey. Your perseverance through these trials is a motivation to many. Keep it up!
We love you!
1592 days ago
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