Long Overdue

Let me apologize for not updating all of you. Life has a way of screaming by you and before you know it, things are way overdue. As of today, I would say I have improved greatly from the last time I blogged. Although I would much rather be further along, its taking me much patience to just acknowledge to myself that I should appreciate the fact that improvement is better then none at all, and things could be alot worse.

Today I found out I am still cancer free. What a blessing that was. I had a PET/CT on Tuesday and wow, they were so quick to read it and get the results back to me. I can only thank God for this. And again are humbled by him. The longer I go with a clean scan, the better my chances are at living longer. I still am on lots of medication which has created very unpleasant side effects, which affect my everyday life. The steroids make me bloated and retain tons of fluid which is very uncomfortable. My legs swell within 5 minutes of being upright. Gravity stinks! My immune suppressant drug makes me very disconnected and affects the instructions from my brain to my muscles causing slow movement and I have to think hard and slow about things like just taking a step. I fall easily because my knees give out easily. So even though I have great news and a promising outlook, the doctors say it will be 1 to 2 years before I am back to a normal like. I will gladly take that. My hair is growing somewhat, but I still have what I call grandpa hair. The one BAD thing about all of this, meaning I am pretty much required to stay off my feet is I stay off my feet watching QVC with credit card in hand!.,MY GOSH I had no idea how much fun it was to shop on TV...someone help me please!!!!!!! Luckily they have a return policy..LOL...so thats the latest. My last doctor visit which is down to one day a week and will soon go to once every two weeks was very good. My platelets are climbing. All my blood tests look good and say my organs and body are recovering. I haven't required blood or platelets in my last three appointments which is great. I had what is called a Chimeira test where it gives an account for how much of your immune system is you and donor. My test showed I was all donor which is awesome. So there you have it. I am still plugging along. More cautious since I have no desire to end up back in the hospital. More aware of everything and anything. We tend to think things like this won't happen to us..but it does, trust me. So words of advice. Old words of advice..live in the moment, enjoy the simple things, like being able to walk through the grocery store, or even climb a flight of stairs and treasure your family and friends...as I couldn't keep going without them.

Home at LAST

I am finally out of the hospital. I had to threatened them. Don't get me wrong, they are very good. But I couldn't continue to stay and knew that whatever I could do there I could do at home. In fact, being at home would motivate me more. I still have to back to clinic twice a week which is grueling, but I have to focus on getting through this. It's now the transplant complications to deal with. Today my doctor said my liver was doing funny things. I said, well yeah, your giving me enough medication to kill a horse. He of course is not an optimist, which is a good thing to have in a doctor, ..because he is always looking for something bad. What gets me is I have been pointing out to them my blood results that have been coming up just a little off for several months and my nurse practioner has said oh thats not so bad. Well today, Doc says its not normal...which really made me mad since I have been questioning it so long. So Friday I do liver tests. I think its all the medication and my liver is finally saying hey..slow down...he thinks it is GVH (donor cells) attacking my liver. Which would eventually lead to liver failure...only thing he says we can do is dialysis and then look for a liver..it wasn't a good day. I am able to walk now. My legs are a little stronger and less painful. My hands are getting better and my legs are not black, blue and red and as swollen. I still have moon face and could be in a parade with a string tied to my butt, floating along like Marcy. My thinking has gotten much better and I am FINALLY getting some sleep. I went for 3 weeks with maybe 2 hours sleep a day. They took out my pic line last Friday and put another one in my left arm. The first one was infected. The medical field amazes me. They really are always just scrambling for an answer. The show HOUSE, really depicks a true tale...unless its cut and dry, they just don't know until something hits them right between the eyes. Anyway, that is the latest. I will know more next week after they do these liver test..I don't know much about dialysis, but I truly hope and pray, it is just to much meds and I can fix it. I miss normal life. Just being normal and being able to just walk and drive, but I am not giving in. I miss sitting in a saddle, I miss everything...oh god here comes the pitty party..LOL...I miss all of you, laughing normally..but it will be back. I just need to be patient and wait for my path...thanks for listening....:-> God Bless all of you..

Back

I am back at UCSF. I have an infection, but they can't figure out what. It's skin related so far, done biopspy, chest x-ray, and EKG since I am having alot chest pain. I cannot walk and my thinking is screwy. So we are back here, I am positive we can figure this out. My boys are still here and hopefully I can see them tomorro Wish I bring you better news.

Lost in Medication

Sorry I haven't blogged in a while. And forgive my spelling, my keyboard is wacko and I have lost my H key, so its a rubber button..LOL. The last week has been tough. Still on high doses of Pred, and many others. I have bouts of disfunction where I can't think or put two and two together. I still have an infection, but at least I am home. That's good for me, but puts more strain on family and friends. I have to go back to UCSF twice a week. My problems that are not sure of yet. My lungs are still clear, but the concern is I am requiring blood and platelets quite a bit. Which leads me to my next request. PLEASE donate blood whenever you can. My counts are so low right now that I literally don't have the energy to tell my muscles to function. When you go and give blood you are giving someone something the really need. When they hang those bags for me, I am so grateful that someone took the time our of their day to give.

That's the most I can tell you right now. No sign of the cancer, but the side effects of the transplant are kicking my behind. I wasn't prepared for this part. I still have MOON FACE..and it's hard to see because my eyes are swollen from the MOON FACE..LOL night everyone

CowGirlAngelsofGod

It's 4AM. My mother is one of these Angels. She drives me back and forth to each appt without so much as a wimper. She puts up with my medical theatrics with a smile. I don't think she knows that God has chosen her to be my CowGirlAngel and how special he thinks she is. I think she is special cuz she is snooring right now!! LOL, but she also takes care of my Grandmother who is 92.

CowgirlAngelsofGod is taking off. I don't even have it set up correctly yet for a bank account and donations are coming in for people in need NOW. It is refreshing to hear and makes my faith even stronger that I had a path God needed me for and this was it. 5 years ago, I had radiation at UC Davis. It was ugly. Of course stubborn at the time, I shunned all help and drove myself to these appts. During those times I met individuals who hadn't a dime to they're name, rode the bus and had small children to feed, I thought how do they do it, the tech said they don't, they eventually give in to the other side of cancer, the despair and financial ruin. It's too much. So as soon as I can get it organized a little better you can designate where you want your donation, no matter how big or small to that individual and we can make something happen NOW, because thats all you have is NOW.

Today I plan on dropping in on my kids I left a few weeks ago on eleven long. There were three when I left, all under 30 living in this area. I will keep you apprised of where they are at. I do know that Linda S from Smooth Run is here with her 36 yr old daughter and it would be most kind to say some prayer for her as well, both of them.
Life is still good for me and my personal relationship with Jesus has been found and I couldn't behappier. Now where is my spell checker?? This laptop is on its last leg...hahaha..oh wait, time for predisone again...wonder woman is back

Loose Track

So many meds, hours, minutes. They run together. A day isn't a day anymore. It's just time, week isn't a week, its just time spent here on earth. I have this totally different perspective on what moments are in life now. I spend time doing thing I normally hadn't in the past and enjoying them. This morning I spent early morning hours speaking with a childhood friend. My age, who has been struck with Lyme's Disease. Not just hey I got bit by a tick, but 5 years ago I did and it went untreated. Now, she sits dealing with all the repruccusions of being bit, by a bug! She is a single mom, attorney, but can no longer function average daily life because of the bacteria and such that has moved into her body. Running to the store, cooking, is a hardship. Being self-employed is a hardship with a young daughter. At first the DR told her she had MS! I guess if you are going to pick one Lyme's is the better outcome, but sheeesh. The older we get, the more we see on how much we just didn't know.

I want to help her, but we live hours apart, and of course I am not much help to anyone except Charmin. Now would be a good time to invest! LOL. Her disease has been left untreated for so long they don't know the damage it has done to the CNS system. The only thing I can do is try to keep some money flowing her way so she can stay afloat with bills, and insurance. And the only simple way I know how to do that is through Paypal.com. So if you can find it in your hearts, even $10 to donate that would be awesome. If you go to http://www.paypal.com/ and send money to CowGirlAngelsofGod@gmail.com with a note for JKliewer, then I can pull the money out and give it to her. She is a proud woman and accomplished alot and raised a beautiful daughter. I hate to see her suffer due to med bills on top of everything else.

A few years back I wanted to start something like this. CowGirlAngels and designed a logo, but thing got put by the wayside. Yes the big orgs like the Leukemia & Lymphoma Association have their place, but there is red tape. And I wanted immediate relief for individuals, so I thought of CowGirlAngels. Where we could raise money, maybe not alot, but enough for meds, food, etc. God is telling me now is the time to get CowGirl Angels wings moving. There are people who need us. So again, it doesn't have to be much. And I am fairly sure you can just send money through the paypal if you go with the www.paypal.com and use CowGirlAngelsofGod@gmail.com. She lives in rural area so again banking is cumbersome and grocery shopping.

My health is still the same. Although my meds seem doubled. I have the blood infection, and ulcers in my bowels. Food goes right throw me. But I am blessed each day to still be here. Well Good Night all, I may just get a couple hours sleep tonight.

OK, 3AM, awake..LOL. Best time on the earth. Quiet, peace, your mind is fresh with the word. Lots of time to reflect. It has been almost a year ago, that Brett's mom, my dear friend passed away suddenly from Lung cancer. This week will be difficult on Brett and the whole family. I remember we went to the service, beautiful like she would have wanted it. She was buried in an esquisite pine box. Then we went to the services and then drove all the way to Diamond Bar Arena to help Shane put on his Spring Run Classic. It was a blurr. She was so vibrant and young and then gone. We miss her tremendously, but I feel her so strongly each and every day, and most of all I feel she is proud of me. She was truly a woman of such honor and I was lucky to call her my friend. We put on one of the biggest barrel races for 3 days with her passing still so fresh in our mind. It's amazing what you can do if you just do it! Love to all of you..alison And if you have a family or individual in mind that needs help, email into CowGirlsAngelsofGod@gmail with a note and info and we can help them as well.

Woo Hoo!

I just woke up and its 6:30AM! I have been trying to acclimate my body to wait until later to suddenly hit the steroid zone, and it worked this time . Of course it took some doing on my part with other meds, but praise the lord! Whew. It should make my day and my husbands much easier. I was able to grab a few whole hours here and there, which has not happened in months. Sleep is so important for recovery. Since we lost our home last May, we had to move into a rental in El Dorado Hills, CA. It's a nice house, but two story and stairs are difficult to manage, so I sleep downstairs in a lower bedroom so as not to disturb Brett with my odd sleep patterns and care givers. Normally at 4 ish I am making some Hot Cocoa and starting my day of work, until about 9AM when I crash from the steroid, then its sort of a fog from there with pain meds. I thought I could get tough and get through the days without, but some days are just to difficult, so if you get funny emails, you will know!

I have a DR appt next Monday at UCSF to get back on track and handle the infections, but nothing we can't deal with. What I am finding is a strain is the insurance companies. How this country survives with or without insurance, I believe leads to the demise of many patients, it is so difficult. And the overwhelming burden some must feel just to make ends meet, the guilt of not being able to pay for a procedure, when in fact, most of the time it is absorbed between the hospital and your carrier, but unless you did deep, you don't know that and you have the guilt which passes to your family and caregivers and friends. It's a senseless scenario and could so be avoided if our legislature and insurance companies were more on the ball.

During my last visit at Sutter, I was released Thursday. A nurse came in, noticeably upset. I asked and she had a patient who had a rare form of cancer. One that was so rare, they didn't really know how to treat it. She is younger the me, two children and beautiful. It has rocked her family. Here is here blog, I think her sister is keeping it up daily, and even though I have never met her, and she may have been right in the room next to me, I ask that you pray for her and her family. I am lucky. I think they have some sort of donation card thing for Target which those little $20 gift cards come in SO handy. http://robynnsbattle.blogspot.com/ I know cancer victims, most are prideful and don't want handouts, but there is a time and place for those of us more fortunate to just give a little back.

Now to Shannon Brownfield and the folks at Round Table. Some of you don't know, but I have been in the hospital for over a month. What I thought we're going to be days turned to weeks and then months. Things are getting better and I wage the war to get my strength back and IT WILL HAPPEN. (oh I heard Brett getting up to start his daily caregiving, what a gem I have in him) Anyway, back to Shannon, yesterday I got a delivery, so heartfelt and I know there is more to the story. Shannon had been reading my blog and relating to the effect that steroids can have on your body. She was apparently traveling in Panama and had something happen which paralized her while traveling and they gave her tons of steroids, most likely to keep her alive. She rode for 7 hours in the back of a chicken truck back to the states where she was admitted to the same floor I was on at UCSF, the Angel Floor I call it. She then paced the halls at night for weeks, just like me and she too felt the presence of GOD everywhere. As she said "those endless nights it is really just you and God"...it was precious for me. She also wrote this passage in the bible given to me by herself and the Staff of the Round Table Pizza Office;
ISAIAN 40:31
They that wait upon you the Lord shall renew their strength; that they shall mount up with wings as eagles ; they shall run and not be weary; and they shall walk and not faint.

Today is that day for me, God bless you Shannon and Sheila and all the crew at Round Table, you are my blessing.
Till we write again, Alison
Please if you could find it in your hearts to read the privious blog, it would tell you how fortunate we all really are in life.

And one las thing. I don't use this blog to fund raise etc. I feel its informative for my friends and family to feel apart of what is going on, I would like to take this opportunity, as I feel its right to ask that if any of you have a story such as Shannon's that you would like to share. I want to put together an Album of courage with these stories for others because there is so much more that comes into play, such as the burdan on caregivers and family. They need just as much help and encouragement. You can email me your story, with pics if you want and I will put together an album at cost to bring to a barrel race to sell with proceeds going to families or people who all the sudden find themselves in a financial crisis. Any volunteer material etc, would be greatly appreciated as well. Our address is 610 Barranca Ct, El Dorado Hills, CA 95762 or you can call me at (916)941-7156. Hopefully by June I can have enough to bring to your charity and you can see your work and Gods..:))) Have a blessed day.
Alison