Where I'll be staying.
and Dr. Craig.
Does anyone know why Dr. prescribed pain medication makes my nose itch to the point that I would just like to scratch it off my face? LOL Does it do you that way? Maybe I'm allergic to it or something.
Anyway Monday was Cameron's 17th birthday and I found out the same day that I had to be in Morgantown the next day. So, I tried to hurry and get a few things done like packing and making Cameron a pan of fudge cause he didn't want a cake. He came home from school and we had just enough time for him to make a wish and blow out the candle then Robert and I left for our long drive.
We made it to Charleston around 8pm, got a room at the Ramada and ordered some dinner then crashed. Neither of us slept very well. Then we got up at 6am, showered and headed on out for another 3 hours of driving. We made it to my appointment with 2 minutes to spare and Dr. Craig and his team were waiting on me so I was taken straight back.
We didn't get out until after 5 that evening. Which I'm not complaining because they could have kept me. First I was given an IV after three attempts. Then we went back and spent 45 minutes to an hour trying to get a sample of my bone marrow. Which really isn't that bad of an experience until the next day and week after. God, do I ever feel sorry for people who break their hips. I can't imagine how they handle the pain.
After that I was put in a room and given two bags of blood and a bag of platelets. All during the transfusion I was being visited by different people explaining to me what I have to look forward to, the treatment process, the donor process, blah, blah, blah. Once I heard, "You'll be spending 3 months in the hospital" I didn't hear anything else.
Dr Craig says my bone marrow is mutating at an advanced rate and that at the moment I have Myeloid Displasia (sp) but at the rate it's going it will soon be Myeloid Leukemia. If they can get it to go into remission with chemo,then I will have a bone marrow transplant. If it doesn't go into remission, well, you get the picture.
I just don't know what I'm going to do about Cameron. I can't leave him alone for three months. I don't want to leave him alone with Robert and I have no one else. Plus, They say that while I'm out there for three months they'll put me up in an apt beside the hospital and I'll need a 24 hr caregiver. I have no one to do that either.
plus, I'll be charged $15 dollars a day for rent. That's over $400 a month and there's no way I can pay the rent here and out there.
We didn't get home until around midnight Tuesday. The next morning I was on the phone with family telling them about needing a caregiver and needing someone to look after Cameron for me. Guess how many volunteered? ZERO!
Am I surprised? No! I don't know why I keep setting myself up for more disappointment. Looks like after 39 years I'd get it through my head that they just do not care.
Cameron would kill me if he knew I posted these pics of him being silly. :o)
I got a call from Dr Ahmed's office earlier stressing how important it is and that my life depends on me getting to Morgantown.
Well, give me an appointment already!
She has been trying to get me an appointment but she keeps getting a recording, just like I was until I thought to change the last digit of the number until i reached a live person.
Now we have the ball rolling and I have to be in Morgantown tomorrow morning at 10 am. That means we'll be leaving here in a few hours and probably spend the night in Charleston.
I'll be getting another bone marrow biopsy tomorrow and depending on my blood work, maybe another transfusion. I'm not looking forward to it. I hope they give me a port so I don't have to keep getting stuck with a needle.
If you guys don't hear from me within a day or two, you'll know they kept me.
On days when I don't feel like doing much of anything I enjoy sitting on my porch and taking pics of all the critters that visit my yard.
I love the one pic of the Hummingbird peeking at me over the feeder.
I been thinking about making a public journal just for sharing the pics I take. Anybody got any suggestions for names?
I'm feeling a little better today as far as the toothache goes. I still have swelling and a big boil right above the tooth that's bothering me, but I haven't had to take a pain pill all day.
The pictures above are of our dog Baby. She thinks she's a cat sitting up on the porch railing like she is. LOL I had just given her a bath and boy, was she dirty.
I guess I should have mentioned that the babies in the entry below are my second cousins.
I have this swooshing noise in my left ear and it's about to drive me nuts!
My energy levels are low. I get exausted just going from one room to another. Or to just empty the washer and load the dryer sends me running to sit down before I fall down.
I'm worried about Cameron because I'll probably be in the hospital a lot and I have no one I can trust to look after him.
He's turning 17 on Monday, the 21st. Most would say he's old enough to look after himself and I agree, but not for long periods of time.
His email is xxCCT1990xx@aol.com if anyone would like to send him a birthday card.
Wow, look at that. AOL made some changes to the journals. We can now add pics, albums and video. Isn't that special?
I have lots of pics I wanna share but don't feel like messing with it today. It takes too long for them to load.
I was supposed to be in Morgantown WV at 1:30 to start my treatment program today but didn't make it. I was up most of the night nursing an abscessed tooth. The entire right side of my face is swollen. I'm in terrible pain and taking penicillin.
As some of you know it takes me almost 6 hours to get there and that's too much driving for me or anyone on little sleep.
I rescheduled and the soonest they could see me is May 29th. They called Dr AhMed and told him I had rescheduled my appointment then he had nurse Beth call me and fuss at me.
I told her and him both yesterday that I had an abscessed tooth. He's the one that gave me the antibiotic and said that's all I need now. Talking about the tooth.
My platelets were down to 10.000 and he admitted me yesterday evening for a transfusion. Said he'd like to keep me overnight but he preferred I keep my appointment. Then I end up missing it. I bet he was pissed.
What could I do?
Anyway, I've been thinking about Kim. Please keep her in your thoughts and prayers. God Bless her and God Bless ya'll.
So, I guess they're thinking that the stem cell transplant that saved my life ten years ago has caused this new disease. They are also saying that this type of Leukemia usually only happens to the elderly. People 50 and over but more so from 70 on up.
My brother and his girlfriend offered to be donors yesterday. I thanked them and told them I may not even need a donor because I'm not taking this new diagnosis serious until I get to Morgantown and get a second opinion.
I've been reading up on it as much as possible but what I'd really like to do is meet someone that has either gone through it themselves or with a loved one. Those are the folks that can really tell me what to expect. That is unless they are like me and chose to block that entire part of their life from their minds. I remember very little about my first encounter with cancer, that is until I read Kim's journal or someone else's who has cancer and something they are going through triggers one of my blocked memories.
Too bad you can't do that with people. I'd like to block just about every person in my life.
My motto used to be to never give up. I'd tell everyone I knew that had cancer to hang on, and never give up. But, in order for a person to want to live, or even fight to live, they must have a loving, supporting, and caring family. They must have a reason to live! Not everyone has that and without it, there's no will.
I wasn't going to write about any of this on here, but here goes!
When I first bought my truck I had the opportunity to get vanity tags. Everything I asked for was taken so I finally came up with JUSTMYLUK and I honestly believe I jinxed it because even though it's been a good lil truck, it sure has been through it and looks terrible.
I feel like JUSTMYLUK should have been embedded in my forehead.
Last Monday I had a bone marrow biopsy and yesterday I got the results. The Dr says I tested positive for Myeloid Leukemia. He also said no one around here can treat me because I have to have a bone marrow transplant and that unlike the stem cell transplant, I cannot donate to myself. So, now I have to find someone to donate to me, that is a match.
I told my family and so far I have two volunteers but both of those can't be a doner because of their own health issues.
I haven't found out for sure yet but I may have to go as far as North Carolina to be treated. I can't afford to travel that far for treatment nor do I even want to.
I've been thinking that maybe I should contact the make a wish foundation so that Cameron and I can do something fun and exciting together. A lasting memory.......Just in case.
When you cannot pray as you would,
pray as you can.
Dean M. Goulburn
My friend had just been diagnosed with breast cancer. Understandably, her first reaction was shock followed closely by terror and all that entails: sleeplessness, anxiety, depression and anger.
What bothered her most, however, was that for the first time in her life, she was unable to pray.
"I don't know what to say," she confided. "I don't know what to ask for. I can't find the words."
I assured her she was not alone. I had also found it difficult to pray when I was first diagnosed with cancer.My biggest problem was anger. I was mad at God. He had allowed this awful thing to happen to me, and I didn't want to talk to Him anymore.
But as the shock and terror slowly wore off and I entered into my year-long cancer journey filled with multiple surgeries, chemotherapy and radiation treatments, my anger ebbed, too.
I realized that God had not given me cancer. A misfire at the cellular level had given me cancer. A bad gene, maybe. Pesticide exposure, perhaps. Whatever had caused it, it wasn't God.
It was biology run amok.
God was right where He had always been, waiting patiently for me to come to Him and lay my burdens at His feet. He knew my fears better than anyone, and He wanted to strengthen and encourage me. All I had to do was come into His presence and ask.
He also knew that I couldn't find the words to ask for what I needed. I wasn't even sure what I needed, so how could I pray?
It was then that He reminded my of the simple bedtime prayer I had prayed as a child. "Now I lay me down to sleep. I pray Thee, Lord, my soul to keep. If I should die before I wake, I pray Thee, Lord, my soul to take."
He also reminded me of the Lord's prayer:
"Our Father, who art in heaven,
hallowed be thy name."
I realized that my prayers didn't need to be original to be heard. In fact, God has given us many prayers that we need only to read or recall according to our own faith traditions.
Sometimes I just said, "God, I am so scared and so tired that I don't even know how to pray anymore." Then I would sit quietly and wait. Invariably, God spoke to me through my heart. He reminded me that prayer is a two-way street and that sometimes all we have to do is be quiet and listen. Let Him do the talking.
Listening is prayer, too.
God is there even in - maybe especially in - the silence when we are still and quiet.
God, help me to remember that prayer is a conversation with You and that sometimes all I need to do is listen. Remind me that, even when I'm silenced by terror and can find no words at all, You can hear what is in my heart. Amen