Yesterday morning, I was feeling pretty good, so I tagged along with Michael as he went off to do the laundry and some shopping. He said I was good company but I can’t imagine I was really much help. One’s body tends to weaken much faster than in strengthens. Coming back up the stairs afterwards nearly killed me. I could not catch my breath. Michael said I took them way too fast, carrying way too much. Some days I’m “Superwoman” in my mind and other days…..not so much. Need to listen to the body. They say a balanced mind, body and spirit equals sanity. Not sure I’ve ever known what that is. 
Anyway, getting out was great. Fresh air, new sights, faces of friendly strangers. I remember how much the walks Amy & I took at MDAnderson helped out. I don’t know how anyone can survive in prison. Especially solitary confinement. Wouldn’t that be horrible? I would go stark raving mad. Guess that’s a good reminder to obey all our laws. After our visit with Frank last night, I felt so good, I wanted to go for another drive. We drove for a couple of hours, just taking in God’s beauty. The weather was perfect, and the scents were amazing. Some from nature and some from food. Ohhhhhhhh….what does steak taste like again? I took my camera but never used it. That is so unlike me but I just felt like sitting back and soaking up the sights. Not necessarily partaking, just enjoying. My ears are at the point where they go up and down everyday. One day, I get hope that it’s going to drain and I get a little hearing back and then a couple hours later, I’ll lose that hearing. It’s bizarre. It’s up and down on the pain as well. Some days, no pain, others, a little. We’ve looked into ENT’s on the route home and placed a call to mine at home. We are waiting to hear back from mine and considering making a Monday appointment with one on the road. Trying to decide how crucial it is. Is it damaging more than just my sanity? We should be leaving here on Friday if all goes according to plan. That’s when we lose our room, and he’s been telling us that is right on track and I’ll be ready. Fingers crossed. Well my husband is pacing the floor, waiting on me to get ready to go for a drive with him, so I best publish this and get moving. He is certainly has cabin fever. My love to all of you.
Well yesterday morning was so great, I thought things were bound to only move forward. Watch out for the speed bumps though. I went to see the chiropractor one last time before he left and he felt he really got some good work done on the head situation. He definately did something because my stomach immediately wanted to expell it’s contents. Michael and I played cards for a while and then planned on taking a drive into town and get some more fruits and vegees. By the time Michael left, I was feeling I needed to rest so I stayed behind. That’s when things started to slide in the wrong direction. I think this is largely my own fault. If you think you are sick, you will be sick. I have to realize it’s going to take some time to get my strength back but I have to make some effort at it each day and it’s not going to come automatically. I’ve been here before and I just have to know I can do it. I allowed myself to stay in bed most of the day. I did go for a short walk in the afternoon but it was really all I could muster. Some of the pain from the ears is back and this morning I’ve lost more hearing in my one good ear so I think we will be looking for an ENT today. Not real sure yet. It’s early and things may improve. I think if I stay upright most of the day, I’ll gain some strength and be able to sleep more at night. Need to wear out that body and mind somehow throughout the day. I try to keep reminding myself that healing is mind, body, and spirit. We are working on the body part, and spiritally I am certainly making progress as I have not felt this close to God in a very long time, but for the mind……it’s struggling. I start to gag just thinking about taking the supplements now. I don’t force enough food in. I’m self destructing my progress in so many ways. I have to remember, I can do this. Mind over body. One’s mind can heal a lot if used in the right way. I walk the fine line of listening to my body and becoming a hypercondriac. I am flying on faith right now and just need to get everything back in it’s working order. I need to do my part. Stephanie, in answer to your question, yes you can be tested as a donor just for one individual and not be put on the national registry. I’m not sure how it’s done without a bone marrow drive but I will find out if necessary. Sheila received her kit yesterday so we should now if she is a match within 2-3 weeks. They won’t test or look for others until she has been eliminated. But I’m holding out for a match. That would make life much easier, just in case we need to use that tool. I’m banking on turning this thing around without chemo. But if your prepared for a storm it rides out much easier than if you are not. Thanks to all of you for your comments and prayers.
Well it’s Tuesday. I feel amazingly better. I actually sat up and read from 4:30 this morning until 6:00. I haven’t been able to concentrate on a book in a while. The ears are still very muffled but the infection seems to be clearing as the pain has subsided almost completely. I see the chiropractor one more time today to try to see if we can get that fluid to drain. It seems to be so close. The sore that I broke out with is nearly healed already. Usually these take a good month to subside. The doctors have tried numerous things in the past 6 months and haven’t even been able to diagnose what they are. This one started out painful like the rest but within a couple of days shows very little signs of progressing. Yeah!! We may even go take a drive today. I believe I’m on the road to recovery. The herbs are staying down better as well, which indicates my body is about done detoxing. I’ll write more later today as things progress. Thank you all for your prayers. I know that is what got me thru some of my toughest moments. My Aunt Marla is right, in the spots you can’t get thru alone, He will carry you. I know my Grandpa was here with me a lot. On one of my worst nights, I had a dream that I think clarified that for me. Thanks again and God Bless.
So we got the call from MD Anderson. They have run the numbers, talked to our insurance and determined that at this point if my sister is a match we will need to come up with $100,000 to proceed. If she is not a match it more than doubles. Or we wait till January when I become eligible for medicare. When we first went thru the numbers, it was appalling to me to find out that some insurances don’t even have transplant benefits. In that case a sibling match cost $263,000 and a non-sibling match is a half a million. Crazy, isn’t it? In a country as rich as ours, people are still dying everyday because they can’t afford the medical treatment they need. I will never pass by one of those jars with the pictures on it asking for donations for a medical treatment. Anyway, I’ll get off my soap box. I just wanted to share that because the shock to me was enormous.
So I guess I scared my husband to death last night as I passed out, hit my head on the bedside table, turned ghost white in the skin and deep blue in the lips. I remember very little of it. He said he almost called 911. He watched over me carefully and said it took about 2 hours for my breathing to normalize. However, as bad as it was, it may have been a turning point. I can’t say my ears are a lot better but they aren’t worse and I can at least tolerate sitting up. We went to the chiropractor twice today as he worked on my ears and sinuses. It was painful to endure but worth it in the end as it seems to relieve some of the pain. I’m hooked back up to another electrical machine and we used the laser on some sores I had crop up. All in all it was a productive day. We choose to try this route now we just need to see it thru. Sometimes I’m leary and my western medication learning comes back to me and I wonder if I’m crazy for doing this but then something happens to make you believe there is more to the body than what we’ve been taught. Maybe, just maybe, there is a chance I’ll live a long healthy life after all. My husband and boys are counting on it.
My Grandma says, some people have to do purgatory on earth and some in the afterlife. Well, that’s where I am. Stuck smack dab in the middle of purgatory, walking the small fence line between getting sucked into hell or pulled towards heaven. The pain from the ears is intense. I can’t even explain it. Sleep is a distant wonder but I’m in bed 24/7 just tossing and turning and moaning and groaning. I’m worried, but my husband is not at this point. He just keeps telling me to hang in there. I must admit my body feels a bit better but I can’t be sure how much as the head is so muffled, I can’t think strait. I can’t get my thoughts of of my head for more than a few minutes at a time. We went to see the chiropractor again and this time he worked on getting that fluid to release in my ear. Finally somebody believes there fluid there. But he worked and worked and then said “you are being really stuburn”, I said “welcome the my family’s life”. Can I do anything the simple way. Anyway, when he was done, he told me he would call me as he was worried about my ears. We’ll see if something new happens today. Last night I fell out of bed and hit my head on the night stand pretty hard. It freaked Michael out really bad. I think I passed out at that point because all I remember is him grabbing my face and saying “stay with me Donna, stay with me Donna”. The machine I was to be hooked up to all night, ended up having electrical issues and we weren’t able to get it to work so hopefully they will bring a new one today. The supplements aren’t coming back up every single time so this is good. I get a little reprieve there. Anyway…..I’ll update more as I feel up to it. I’m praying that I’ll be feeling loads better by the end of today or tomorrow. Please keep all of your prayers coming.
Thursday came and Thursday almost went. We were beginning to believe that some wires had gotten crossed and some miscommunication had taken place as the day was slowly fading and we hadn’t heard from the gentleman we had come so far to see. Let’s call him Frank for the sake of this story. Anyway, as it turns out, Frank wasn’t taking any new clients as he is extremely overworked right now and his days start around 5 am and end around 9 pm. But he was gracious enough to accept us as we were here already and he has a huge heart for the sick. I had just told my husband that I though a bath would feel really great but I was afraid as soon as I got in the tub, Frank would show up. He encouraged me to do anyway and drew a nice hot bath for me. I had been in there for about five minutes. The water wasn’t even completely done filling it when Michael came in and said “you were right, he’s here, you need to get out and get dressed.” So I did and away we went. He looked into my eyes with a device, touched several parts of my body, had me hold my arm out as he tested certain things and used the strength of that arm to answer those questions he had about my body. Standard Kinesiology really. I’ve done it before so it was not a surprise to me. He found the main part of cancer was in my voice box and the surrounding tissues. This surprised me to a degree because the dr.s had never pinpointed that but then it didn’t surprise in the way that many people had commented on how my voice had changed and lots of times people thought I was hoarse when I was not. He also said there was damage done to my heart, liver and kidneys from the chemo. This too was nothing new because the dr.s had already tested that and warned me of this danger. In some ways, they were worried to administer new chemo because the damage was that severe but also felt there was no other way and we would just have to hope that they would handle it. But he also said that I had some heart valve damage that was inherited from Mother’s side of the family. Anyone from that side of the family reading this won’t be surprised either. Anyway, the double ear infection is being tackled first so I can get my hearing back. We worked with some electrical equipment where I held a cylinder in each hand, keeping them apart and laid on the bed with these for 3 and 1/2 hours. I have to say, my ears still hurt but they aren’t throbbing to the point of wanting someone to just shoot you already and put you out of your misery. This is good because I’m sure my husband was tired of hearing me moan and groan and not being able to help me as nothing was making me comfortable. We did some kinesiology to find out what supplements my body wanted and what ones it didn’t. There were a few that really surprised him as he thought I could use them but my body said no and we moved on. Then there was one that my body wanted more of and he had never seen that kind of reaction before. We set it all up and he left to have dinner with his family and said he would come back right after. And he did. We did some more kinesiology and went over the diet do’s and don’ts. Basically, I eat either fruit or vegetable for breakfast with supplements, wait an hour eat more of the same with more supplements and drink some tea. Lunch and dinner are exactly the same. I can eat nothing but raw fruits and vegetables and I may never mix the two. There must be at least 3 hours in between eating a fruit & vege. I had heard this also once before but never understood why. So much for my delicious summer strawberry salad that everyone loves so much. Anyway, my husband decided since I hadn’t really eaten all day we should get started right away with dinner. Ok…no problem, bring it on. Ughhhhhh…………….can you say detox!!! I had been warned but I didn’t think it would be almost immediately. Within half an hour, I had expelled everything he had worked hard to get down me. I was heaving. It hurt. But it didn’t last too long and I was able to go to sleep and got a decent nights sleep. Today, we are going to see a chiropractor and Frank. I had my watermelon and supplements and it is staying down. Yeah. The intestines are beginning to gurgle so more detox may be on it’s way. I am at least sitting up and not constantly curled up in bed, so this is good. I have faith and we are moving in a good direction. I’ll update more as it takes place. Keep those prayers coming as they are the most important part of my journey. Love ya all.I forgot to mention that when I started to detox the first time, it took back to when I was kid. It started shortly after the first set of pills and my stomach had enough time to process them to the point that the contents were out and mixed together. Let’s just say the smell and look of it all made me feel like I was a cow who had just gorged on some silage. That is what it smelled like. Silage. If you didn’t spend a lot of time on a farm you may not be able to appreciate this but all I can say is I felt like I was right back there on that tractor with my Grandpa, only this time I wasn’t just feeding the cows, but enjoying their breakfast with them.
Well as some of you know, it’s been a bumby ride. Sorry I’ve been horrible at updating but life can get crazy and time flies by so fast. With the new adventure we’re on, I’ll try to update daily as long as I can get wi-fii. We had some ups and downs in May and June but for the most part I was recovering well and doing ok with the chemo. We went on some hikes in the mountains and I didn’t have a hard time breathing so no alarms there. I had been suspended from chemo for 3 weeks when my bloodwork came bake low. We went ahead and did the vincristine and didn’t think too much of it. Then the next blood test came back worse and it was decided that I should have a bone biopsy. In the mean time Michael and I decided to go on a belated honeymoon while I was feeling well. The boys went to their Dad’s, Brandon was scheduled for a 6 week wilderness camp, our friend Geoff was housesitting for us making sure the dog survived and the pool stayed blue and we were loaded up and headed North to camp our way thru Yosemite, Northern California, the Oregon Coast, the Washington coast, a small jog into Canada, back down through Idaho, over to the Grand Tetons in Montana, down to Yellowstone in Wyoming and back home. All of this was set for 4-6 weeks depending on how I felt. Well we made it thru Yosemite. On Monday we got a call from my Dr. saying that the bone biopsy showed that the cancer was back and we needed to get to Houston as soon as possible. We turned around and headed South landing in Houston on Friday. I was sick with a migraine and nausea for part of the trip so I don’t remember a couple days but then I felt better and all was good. We had an apt. with MDA on Monday and they told me I had blasts in my blood as well as my bone marrow so it was urgent that I start chemo right away and start the bone marrow transplant process. We had decided ahead of time to try some alternative methods if things came back so we were already on board with a special diet and our research was really just beginning. Of course the dr.s discourage this and told me I had days to decide and not weeks. So we met with my transplant team on Wednesday and left Houston immediately following with our heads spinning. The odds were not good and contrary to what I’d been told before, a transplant is not a cure and there is still a 50/50 chance that it will return. So an opportunity presented itself to us and we decided to take it. We were offered a rare chance to get into see a nutritionist that specialized in this kind of work and who has personally helped cancer victims all over the world. Some strings were pulled and I was able to get in to see him if I could get to him by Friday (today). We pulled into the area late last night. Thanks to my Family back in Kansas who took up donations, we were able to afford to try this. Michael and I both believe that so much of what happens with our bodies is related to what we put into it. He has seen me go thru the worst with chemo and we don’t feel we have anything to lose by trying to control and heal my body with the proper foods and supplements. If by chance it doesn’t work than we can always fall back on the chemo but either way, my body will be stronger to handle it with having had detoxifying it and getting it in proper alignment and working order. We will be here for the next 7-10 days I believe and hope to learn a lot. None the less, the overall outcome of this whole thing can look grim if you choose to let it get at you. The statistics will drive you crazy. On top of it all, I got an ear infection that has been excruciating. It has now traveled to my other ear, making life downright miserable. I have about 30% of my hearing left and not a lot of whites to fight it. I have been using antibiotic drops in them but they are not helping as much as I would like for them to. All I can ask of all of you is to continue to pray for us and keep us in your thoughts. When we stopped in Colby, my Aunts and my Grandma put together a meeting with the local Catholic Priest and he had me come in to get the Sacrament of Healing. I’m praying this helps as much as anything else. We appreciate everything everyone has done for us over the past couple of years. I will try to update more tomorrow. Love you all.