Alison's Transplant Trip

Long Overdue

2008-05-22T04:28:00.001-07:00

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

2008-04-15T23:16:00.000-07:00

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

2008-04-05T00:39:00.000-07:00

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

2008-03-29T22:25:00.001-07:00

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

2008-03-21T04:02:00.000-07:00

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

2008-03-20T01:41:00.000-07:00

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!

2008-03-15T06:29:00.000-07:00

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

March 14th?

2008-03-14T02:05:00.001-07:00

I think that's the date. I just got home from the hospital in Sacramento. It's been a whirlwind. Even my part of my family didn't know I was back in. Right now I am dealing with E. Coli which I got from a second endoscopy. Dirty procedure basically. It's a risk you take. My lymphoma is still gone, so that's all that matters in life. I can deal with the every day stuff. My GVH disease seems to be back under control with steroids. And boy or boy are those a different monster. I feel for those of you that have to take them constantly. What a mind game they can play on you. So as far as health, we are were the plan wants us to be. Going forward, we just deal with what pops up. I have an infection, but the doctors have NO idea what kind, its so obscure. But, in time they hope my body just heals itself on its own. That's the whole concept of getting a new immune system. So just a few set backs and we are back to living, and you live with the transplant issues. That's the committment and choice you make when you decide to do this. It's not like hey, I will have the chicken! It's ok, I am chosing to change my life to live and everything that goes along with it. I still marvel over the concept that one person in this world opted to save my life. One person is all it took to give me a longer life. I can't wait to thank that person. Can't wait...now....its off to the fridge, the steroids are getting HUNGRY again...lol...blessings to you all!

Still HERE

2008-03-06T00:15:00.000-08:00

Still here. Its 12;15 AM in the morning. I have had all the sleep medication they can give me, and I am sooo tired, but the Pred keeps me awake. I still look like a parade balloon and want to eat the walls down. But my diet is strict so as not to disturb anything going on. I find myself having whole conversations with NO ONE in the room. Weird, but they say Friday or Sat release. I can poop and pee at home, Sorry carla, no shopping on the agenda. Well I am waiting for one more pill to do the trick, if not then its walk the halls again, walking,,ugh

I could enter the Macy's Day Balloon Parade and WIN

2008-02-29T20:04:00.000-08:00

Three weeks here. I thought it was going to be a few days. HA. I look like I could be a floating balloon at the Macy's Day parade. The steroids, heavy, have stocked on the fluid. I once had tiny little bony feet. HEHE, they look like chubby tree stumps. Not one line anywhere and I have no curves or anything from the wait down. All fluid. 25 lbs of fluid in 2 weeks. That can't be good for you! But the doctors are using steroids to calm down my Graft VS Host, so its a trade off. Today was a good day. I went to one of the rooms they have at the end of the hall for patients and their families to read a book and enjoy the view. I was asleep for the first time in three weeks immediately. Slept for 2 hours straight. I am sure I was drooling, but wow, did it feel good. I am not one of those people who can sleep anywhere, some can pass out the minute they get in a car. Not me, its a procedure. But today..aweeee..so nice. I hated to leave, but apparently my IV pole had been beeping for a while.

It looks as though I will be released on Sunday aside from any unforeseen problems. They have juggled medications that don't seem to mesh with my body, so they are sending me home with problems, but problems I can manage at home. And it's time for a change in my way of life, diet etc, This could be a chronic problem lasting years, or acute and go away in a month or so. But this was the plan all along, To have strong donor cells to kill the cancer or at least fight it. I wonder if my donor has a grasp of the things he accomplished by just taking a swab on the check. He saved my life and spared my family. What a gift. And you all have it.

God's work

2008-02-25T02:23:00.000-08:00

Here I am at 2:30 AM listening to bible study on TV. I do it almost everynight. I have no bible, but you can reach God everywhere. Not out of coincidence, today Brett and I met a family from Sonoma. A young man in his prime of life with leukemia. For some reason instead of walking the hall, we turned into a family area where they were sitting, large room overlooking the city and the bay and I asked if it was OK we sit. They said yes and we visited. The young man had to go to see one of the doctors and we stayed to visit with the family. They asked me questions because I have been though this ordeal for so long and two transplants. His mom felt he might be losing his faith and hope. He was diagnosed in Sept 06 and had relapsed. I told them my story and they were floored. No one can give you a death sentence except yourself or god. I told her of my insomnia and how I walked the floors at night. She asked that if I had the chance to help her son find his way back for she felt he had lost his faith due to the relapse and was having a hard time. I said I would help as much as I could. Well tonight as I rounded the corner he was coming out of his room and he waived and asked if he could walk with me. We talked about everything from his faith to his diagnosis and how he felt. It filled me with such joy, so much to explain to him how Jesus had helped me through this most difficult time. And when I explained to him I was not a believer before the illiness, he was shocked. He had been raised with Jesus from Day one and always believed. Now it was being tested and he was struggling with it. Young, just marrried and in the prime of his life. It was God working through me to help him and I felt blessed to have been there at that moment to give him some comfort. We walked and talked for a least 30 minutes. My prayer tonite is for him. To have some peace and hope for tomorrow.

Still here

2008-02-21T18:20:00.000-08:00

Well its Thursday and going on two weeks. I thought it was going to be a short in and out. But things are still not under control. Steroids are UNBELIEVABLE. I am on a very high dosage, so I don't sleep. They try everything, too the point they say it's not safe. My evening cocktail starts with Ambien and Ativan, then more Ambien, then benedryl, then Ativan. No sleep. The nurses just are astonished that I am not out like a light. 4AM they give me another dose of steroids. I walk the halls at 2AM, dragging my big machine around with me. You would be surprised how many times you can run over your own toe when there is no one else within 50 feet of you. Never fails. I do it everytime. My computer is going on and offline which really makes you think of other things to do. I think the nurses are avoiding my room now, because I talk to much. My IPOD's battery is dead. BUT I don't have cancer...so I couldn't be happier. I love my husband, who comes every Friday, sleeps on the awful chair with blankets and gets me whatever I desire. Although everything I desire I can't have because of the GVH in my intestines...most people would think this was hard. But it's not. I miss my dog, but he is being well taken care of and loved. I feel Brett and I are finally coming out of the years of fog, and all I can think about is getting better, even if it means staying here longer, laughing, living, loving and getting back some of the things in life that we could only dream about, but now are very possible. So, I say I am here to Sunday, could be longer. I will blog when I can, but my puter is unpredictable....like life. Yes boring blog...but I am bored, although happy and grateful

Day to Day

2008-02-16T08:42:00.000-08:00

Things change in your life daily. There is no such thing as one day. Each day is a new life. One day you are planning for the worst, the next day things change and so on. You never know what God has in store for you, never. You just put your troubles in his hands and pray that you are as strong as he thinks you are! This last week was incredilbly difficult. The nurses here on "Eleven Long" are truly angels. For the past two days I have had a floater nurse because of the lack of qualified nurses and the downfall in the profession. What a difference it makes to have an educated, extremely educated nurse who specializes with what is going on with you, instead of a general nurse. It can really make or break your day. Stepping off the Eleven Long floor you are in another world of this hospital, it seems this floor sits on its own little cloud and functions so smoothly. It gives you great comfort knowing you are in good hands.

This has come to me more so, because all this week I have had to endure tests from all different floors of the hospital, and the difference in personnel, procedures is astounding to say the least. My first test was CT on Tuesday. Not so bad, but they handle you like baggage. Second test was an endoscopy and colonoscopy, test itself wasn't bad, but the day started out horribly and ended that way, all due to other floor personnel. The nurses in the before and after care room, 7 in all, sat and gossiped, drank their coffee and played on the internet, then ate Valentine day food, while all the patients were laying there with nothing, since no one could eat or drink. Unbelievable. That test put me out for the rest of the day, next day was a new Pic Line. I was smart for this one, I pushed my pain button several times before the trip because I knew from previous experience all they do is topical numbness, so I was more relaxed and actually watched and enjoyed the procedure itself. I don't care for the purple toy airplane (he called it a butterfly, I said airplane) sewn into my arm, but I have no veins left and no choice, other then another port in my chest. The final test was Thursday and that was the PET scan. The endoscopy showed irritation in my stomach, but the biopsy did not show graft vs. host disease, the colonoscopy did show graft vs host in my small intestine which was very much inflamed. The CT scan showed a mass under my kidney which was our greatest concern. It could be a residual tumor still dying, scar tissue etc. We wouldn't know until I had the PET scan which measures a certain criteria of FDG uptake which indicates cancer activity. Friday morning the whole team of doctors came in and at first said well the PET scan does show FDG uptake, I was devastated at first, then they said, but it appears to be from the inflammation in your small intestine where your graft v. host disease is, not from the tumor mass. SO it was good news. This was the plan all along. My donor cells are acting up and creating a little turmoil in my body. In doing so, the concept is they will also recognize the bad lymphona cells and kill them as well and not let them multiple, thereby keeping me in remission. The flip side is Graft v Host is still very serious and must be monitored with medication. And can kill you if out of control. But if you are careful you can control it. When I came into the hospital I was in great pain, and about 30 lbs down (20 of which I had put on for the transplant) now with all the fluid and steriods, I have put on 15. I have BAM BAM feet. Brett says "Honey these nurses don't know who BAM BAM is". I laugh, because all I can see are the flintstone feet. I know that the weight will drop once I leave the hospital which should be in 3 or 4 days still, but I am stronger and now that I know, or we know, we are looking forward again to the future. Two clean scans is so encouraging and we couldn't be happier. For all you believers, I have more stories to tell about how I got through each one of these trials. My PET scan tech was in his own little world. Little did he know that his Tony Bahama shirt was un-buttoned right over his pudgy belly button, while he played the saddest 80 rocks songs in the world. 2 hours in that machine, crying from the saddest songs ever and then getting an eyeball view of his belly button 6 inches from my face. It was the best day ever.

Back in The Saddle Again...NOT

2008-02-10T18:57:00.000-08:00

I tried, and I tried hard not to be one of the patients who eventually gets readmitted to the hospital, I held out for 105 days. I had been having problems all week and I thought they would get better, but they just kept getting worse, so Saturday Brett drove me down to UCSF and I was back on 11 Long which is the bone marrow transplant wing of the hospital. So far its one of two things or both, an infection in my small intestine or graft vs host disease or both. I have had a ct scan which showed inflamation, but the only real way to find out is..yup you guess it...go in at both ends. They say its hard to get to the small intestine but they will try, taking a biopsy with the endoscopy and buttoscopy..hehe.. I have to say I fought coming here and wasn't pleasant. The smells just brought it all back, and I instantly wanted to leave. I was an ugly patient until pain med's, fluids and antibiotics made me more comfortable.

So I wish my latest blog had better info. I believe this is only a minor setback and I will be "back in the saddle" soon.

Still holding on

2008-01-19T13:30:00.000-08:00

I haven't blogged in a while. For me I have to be in a certain mood to blog or its just a bunch of words which don't mean much. Since I last blogged I have made good progress. I have the start of eyelashes..woo hoo. Mascara is still worthless though. Eyebrows...another big woo hoo. AND, fuzz on my head. It's a start. All my blood work continues to be inline and my doctors visits have gone down from two a week to one every two weeks. I did get a little cocky a few weeks ago and venture out. I feel like a young person in an old woman's body. My mind is wanting to do all these things, but my body is still weak and slow. So low and behold I caught a cold from straying off my path, which kicked my butt. Ugh it was awful, but after a wonderful nasal test which I will spare you the details of, for influenza, it proved to be just a common cold. But it certainly set me back and zapped my strength.

They have also reduced my medications and are slowly reducing the anti-rejection meds. So far I have had no significant problems. They tell me I am a star transplant patient "on paper". I say what about not on paper? And they just say "well.." My doctor is thrilled and now instead of medical discussions, we discuss his horseback riding experiences, which were few, thank god.

Our plans are to just stick to the routine and ride this out. I will be so happy just to have a little hair. And its not vanity, it's a sign I think all cancer patients go through. Having no hair labels you as being sick or dying. It's tough going places, nice places, and wearing a scarf. So mentally and emotionally having hair is a big thing. My next scan will most likely be in March and if that one is clean...oh I just can't tell you how happy we will be..so happy. Relapse is common, but the longer you can stay clean the better. January 25th will be my 90 day mark! Thanks for all the prayers from everyone. And I will try to be more consistent with the blog!

Merry Christmas!

2007-12-24T09:35:00.000-08:00

Modern medicine or miracle? I believe in miracles from God. You know how part of you wants to believe and the other has doubt? That doubt is not God. That doubt is you. God doesn't doubt what he can do. Because he certainly had no doubt when he rid my body entirely of cancer. Yes, the cancer was gone, gone like the wind, gone like elvis, gone like hand timing a barrel race! My scan results came back and astonished all, the doctors most. I still have some bulky lymph nodes, but they showed no sign of active disease. As I sat in the office waiting for the doctor to come in with the results, I was at such peace with whatever he had to say. I had gotten a call the day before from my Sutter doctor, but didn't understand how he was reading the results, so I waited to speak with Dr. Linker. I had prayed hard since the start of this journey. It was difficult for me because I was confused with how to pray and just having the faith that it was heard. I admit I had times of doubt. Those times I would turn to my book of faith and it would pull me out. While I was in the hospital, and you can choose to believe or not, but I have no reason to lie, I had two experiences that I have decided to share. I claimed both of those as clear signs that God was listening. The first was evening time and Brett was there. I had decided to try and sleep which never came easy to me. I closed my eyes and immediately I was in an opening of a cave, similiar to one on the ocean. High rock walls but the entrance opened to the sun. I was standing in the cave and there was the brightest warmest light shining into the entrance. It was so clear, I immediately opened my eyes and looked around the hospital room. Brett was listening to his Ipod and the tv was on. I didn't know what to think, so I closed my eyes again. And it was the same vision. This time I walked into the light that was at the entrance and thats the last I remember and fell asleep and sleep through the whole night. I woke up feeling special that I had had that vision. I didn't know what it meant, if God was giving me a sign of love or that he was listening. I hoped it was a healing. Then the next night I had a dream, and it was a horrible dream. I took it as a sign of choice. He had shown me one choice and this was the other. I was floating, all was dark, there was no ground, just dark tunnels and I was moving quickly through the air, but not of my own free will. There were others like me and then there were others that were demonic and when they passed you or came near you it was frightening to the bone. Now this is where it just got chilling. A young child, infant like came toward me, it had a tail and small horns, suddenly a large demon came to the child and with a serpant like tongue licked the baby with one big lick from its chest to it's tail. Like it would eat him. I woke up, in a panic. I knew where I had been. And never wanted to be again. Funny thing with me is I NEVER dream or at least remember anything about them. But this was in 3D and I was there. So you can believe or not. I still had some work to do and I think God was telling me that, saying I hear you, but you have much to learn before I can give you what you want. So I searched and searched until I realized it was Self that was getting in the way.

Now what does this scan mean medically? Well, this is the kicker. My donor cells are still to young and immature to kill my cancer and in fact I am still on immuno suppressants to keep those cells suppressed. Therefore we can't option that in as to why all 14 areas of disease are gone. Then there is the chemo. Before the transplant my doctor told me that the chemo chosen was not designed to kill my lymphoma, but to wipe out and kill my bone marrow, in order to replace it with the donors. He said it may have a bit of an effect we hope, but thats not the goal. So if you are a medical mind, weigh this against the fact that I have never been in remission for the 6 years I have been diagnosed, nor has any chemo been overly beneficial.

With all this said, I am still in a state of humbleness. People say aren't you happy, I say no, I am just so eternally grateful. And we are not out of the woods yet, I still have the GVH disease to deal with which the doctors say will make me pretty miserable and sick. And relapse is always in the wings. My weight is dropping, so my struggle is still there, but praise the lord, it was Him. It just took a knot head like me a little longer to figure it out.

So Merry Christmas everyone! Know all your prayers were heard, and that's a great gift, to know you are heard.

First Test

2007-12-20T09:16:00.000-08:00

Yesterday I had my first scan. Normally they wait till the third month, but since I was feeling discomfort they rushed it. My doctor is hoping I am feeling discomfort from something else. If it is the Lymphoma then I am in a bit of trouble. My donor cells are not strong enough yet to fight mature Lymphoma, especially one that appears to be moving quickly. Tomorrow we will have some tough decisions to make depending on the test results. More chemo, which will not get rid of the Lymphoma but possibly slow it down, or the chemo could do nothing at all, except put me back into the weakened state I am struggling to get out of, OR completely take me off the anti rejections meds which is chancy. Allowing the possiblity of the donor cells to attack my lungs, liver, and other organs. The doctor said some people do get through it, but he wasn't promising anything. But I have faith and still hope left. Brett and I are going down to SF today for my appt tomorrow and then we will have some heavy time discussing what I really want with the rest of my life and how I want to live it. For once I am hoping I am so wrong and the pain I am feeling is something else. I will let you all know once we have information and decided. :-(

Ups and Downs

2007-12-12T20:04:00.001-08:00

They are there. Good days, which means you were able to walk 40 ft without wanting to sit or lay down and when your mind came out of the hole to enjoy a moment of life. Bad days, come from out of no where for no reason. Your body is sooo out of whack, cell wise, chemically due to all the medication, your mind has no other alternative then to shut down for most of the day. But you have to just drudge on. Each day means another day out. Each day you get further and further away from your transplant day, is another day your body has rebuilt part of itself, and you are a bit better. Yesterday I looked around my beside. I have a three drawer cabinet full of medical supplies for my daily IV bag of Magnesium that I do myself. I flush my lines once a day. What's strange is, its gotten to easy for me. I can pop out a syringe, get out the air and have it ready to push in 30 seconds. Then next to the drawers is a IV pump pole with a pump, and then a medical disposal bag. Then my nightstand is filled with prescriptions, heperon flushes, saline flushes, lots of alcohol swabs etc. I guess what I am trying to say is even though you go home, treatment continues, you just do it yourself. The reality of daily care, daily routine arranged around your pill times is grueling. But what else do you do? Give up? You just do it.

A few years ago I was reading another cancer patients blog. And I saved something she said that hit home with me. This is what she wrote-

"Cancer patients do a lot of talking about the insight cancer has given us -- about how we're so much wiser, so much more aware; true enlightenment by way of the Cancer Path.
It's all true.
But there's something soothing about the clear moments right before the diagnosis, when disbelief and hope and that stubborn will to live align in just the right way -- when we see survival as not just an opportunity but a human right.
Yes, no matter how many rounds you've fought or how much wisdom cancer has given you, there's still fierce strength to be drawn from those last moments of naivete."

Now comes the aftermath

2007-12-08T21:01:00.000-08:00

Well my rash biopsy came back Graft Vs Host. Very strong GVH. I don't think they were wanting to hear it was that strong. It's good and bad. Good that if the donor cells are strong enough to recognize my tumors and kill them, bad because its so soon. Most GVH doesn't show up within the first month, usually two months. So my body has another issues to deal with. My doctor stressed to me that in the two months that he would be suppressing my donors cells to control GVH, he was worried that during that time my cancer would get a bigger head start. Well now what do you do? The longer you suppress the cells, the more the cancer gets ahead, or you taper off on the anti-suppressant drug and my GVH attacks more then the cancer. It has already started in my stomach, it's not to terribly bad, but sometimes you really don't feel well. My port in my chest is looking suspicious, so now I have added another two medications to my daily routine with totals 20 pills a day. I have had some familiar pains off and on and symptoms coming back, so I know the cancer isn't just sitting there. The next few months are going to be difficult. If my port line isn't better by next week, they will probably remove it and put in my favorite. A pic line. And trust me, there is no way I will them do it cold turkey. One thing about the staff at this medical center. They're very confident so you really can't be mild and meek. You don't have to be rude but you have to stand up for yourself. Last Friday the NP wanted to give me some IV antibiotics for my port since it was a little red. And then she murmured Vancomycin. I said WHAT? You can't give me that. I am allergic to it. She said well that is the best drug available if your line is infected. I said well I will not go through what I went through ever again. Then she tried to tell me if she did it slow I would just get a little reaction. I said, call Dr Linker and tell HIM you want to give me this drug. I had to convince her, because she felt, even though she wasn't there, whatever reaction I had was worth the strength of the drug. Dr Linker was there and saw what happened. READ THE FILE PEOPLE UNDER ALLERGIES. So I may have to spend a night in the hospital to have my line taken out and a Pic put in. And now my body has decided that no pain medicine, no matter if its filled with aspirin or acetaminophen, or pure as snow, it triggers convulsive vomiting. I can't have Vicodin, Percocet, Demerol, (please excuse the spelling, sometimes I can't remember things) diluadid, morphine, all the oxy-contines and oxycontons whatevers... NOTHING. Even with anti nausea drugs I become ill. The only thing they could find in the hospital was phentinal which is used mainly in surgeries because its not a long lasting pain killer. So its going to get tough. But one good news on Friday..in two weeks, if everything stays ok, I can go down to one trip to UCSF a week instead of two. That will be nice. So that's the latest. It's difficult at times to put thoughts together but I will try to keep you all up to date...and brrrr...it's getting COLD. Not envying all those die hard barrel racers running in the COLD!!!!

Homeward Bound

2007-12-02T18:06:00.000-08:00

Well its official. My doctor said I could go home. I could not believe it. I still have to go to UCSF twice a week for monitoring and such, but the remaining time I can be at home. I have to admit, the night before my appt, I did click my heels together and say three times "There's no place like home". It's very rare that they let a transplant patient only a month out be further away then an hour from the clinic, but I have had little issues with the exception of some graft vs host disease rash on my chest. The dr's are excited about it and haven't verified if it actually is GVH, so a biopsy was done last week and I should know this coming Tuesday. And I have to say, I have finally found a doctor who, in my mind, is truly a doctor. If you recall at first we butted heads, HARD. I found him confusing and manipulating and felt his bedside manner was awful. I had put him aside in my mind as a minut part of this whole journey. He has proved me wrong. I guess once I made the commitment to him, he made it to me and I feel he truly is doing all he can for me. Not treating me as just another patient, but he wants to save my life and he is emotional invested. He treats me a bit like a daughter, which I like. And I do everything he tells me to do. If there were a day I was so low and sick, and he would say, try to get out of bed today. I would. I would walk the hall until I knew he saw me. Sometimes he was hard to find! Then I would fall back into bed. But he was right. It took me 6 years, 5 medical groups and 8 doctors later, but it was worth it.

So I am at home. Well our temporary home. Brett and I drove to see our house today to see how much work is left and it doesn't look like it will done till March. Hopefully I will have hair my then. It's cold without hair. There was a time in the hospital when I hadn't looked in the mirror for a long time. I would shower everyday, but just get back to bed because the shower would wipe me out. And then moisturize in bed. Then one day I thought maybe I will put a little make up on, just for something to do. I had a little hand mirror. I put it to my face and stared and stared and stared. I knew my hair was gone. But my eyebrows and lashes were also. Well that's not entirely true, I had 1 eyelash on my right eye and 3 hairs on my brow. Under my eyes was a purple hue, my skin was pale, my lips paler. Oh and sunspots even darker. I sat there and looked in that mirror and thought, I still feel like me. When people would come to see me, I could see it bothered a few, made them sad. But it didn't make me sad. It just made me realize you really are what you are on the inside. Brett says he doesn't see anything but me. Most men wouldn't feel that way. I married the best man ever. He told me God put him on this earth to take care of me. Boy was I ever blessed.

So now that I am home, I am still confined for at least another month. Then I can venture out. They did a blood test last week which will tell us how much of me is me, and how much is my donor. And I will also have a scan in a few weeks to determine how much disease is left. Then we will decide what to do. So that's it for now. My little dog has to wee and one of the good things about being home is, I have to get out of bed and take him!

And Gina, that you so much for giving me that scripture. It has helped me in so many ways get through some difficult times.

Happy Thanksgiving

2007-11-17T08:25:00.000-08:00

We have so much to be thankful for this year. Especially me. All the girls who continued on with PacWest, Becky, Kim, Kailey, Tiffany, Lynn. All the encouragement I have received from everyone. Brett and I feel truly blessed. And being OUT of the hospital a week ahead of schedule is a huge blessing. I am staying in Berkeley with Brett's Aunt. A beautiful home and its very peaceful and family is taking great care of me. I have many medications to take daily and really have to track my water intake. I had my first clinic visit yesterday at UCSF and the doctor was pleased (then told me not to get cocky? Why would he think that?), although he did say the tricky part would be coming up in the next few months. He said I should start experiencing some graft vs host disease in about 2 weeks. This could cause some complications. He also said in 4 weeks he would scan to see how much of my disease is left and then determine when to let the donor cells "out of the box" so to speak. I should be much stronger when this occurs. Right now I am still very weak, but each day I get a little more back. God has lead me Day by Day. I have strong faith that this will cure me and I can't wait to return to life. Brett and I wish everyone a wonderful Thanksgiving!

Checking Out Tomorrow

2007-11-13T10:58:00.000-08:00

It's about 11AM on Tuesday and I have already been examined by three doctors, 3 nurses and had a lesson how to clean my port. How they expect you to remember all this is crazy, especially when I can hardly remember what I did an hour ago. I will be released tomorrow barring any unforeseen problems. This isn't because I am feeling better, it's because my counts are back in normal range. As soon as that starts to happen, there seems to be a frantic effort to get you off all IV meds, walking around as much as possible, off IV fluids. WHY? Insurance. Insurance companies don't want to pay for you to be in the hospital unless its absolutely necessary. This makes sense, but it's difficult to make the transition. Brett will be picking me up tomorrow late afternoon. First he must go through the lessons on what to watch for with Graft vs. Host Disease and all the other things to look for that are warning signs. Then its back to the clinic on Friday and twice a week after that. I will continue to blog to keep everyone up to date. All your prayers have been so appreciated.

Spelling and Drugs Don't Mix

2007-11-12T13:23:00.000-08:00

Wow. I just read my last post. I hope everyone can understand me. Today is Monday. AND..I am preparing to be released on Thursday! That's the plan although I still feel very weak and yucky. My lower lip is covered with soars and the lining inside my mouth and throat are dead. Or that's what the doctor said when I asked him why my mouth felt so thick and coated. He said well all the tissue is dead. I do have someone who could come in and cut it out. I said no thanks. So the plan is to slowly wean me off of the IV meds and then fluids and then make sure I can eat. This morning I had about 5 bites of raisin bran and that was a big task. I have to then come back to the clinic twice a week to have my anti-rejection meds regulated. Well there is tons more to say, but I am tired. Time for a little nap.

A Romantic Dinner For Two

2007-11-09T17:37:00.000-08:00

It is 6PM and Brett and I sit her on the lovely 11th floor of UCSF. His meal is turkey, gravy and mash potatoes with brocolli and a lemon bar, followed up with a Marachun Won Ton Soup in a cup. You know the ones you buy at the store for $.49. The turkey dinner was mine but I quickly handed it off to him. YUCK! Me, I get a frozen solid strawberry shak. Probably better it was frozen. I managaged to get 6 bites in, now I am done. Today started out decent. Woke up early 5AM and felt ok. Brett went and got us Mocha Choka Latte DA DA or something like that, and for a while it almost felt like a normal morning for us. We read and discussed the newspaper. Then I had to go wee weee, which was no big deal until I laid back down in bed. The it hit me. The DREADED BONE PAIN. I had forgotten all about it. Two to three days ago I started getting neupegin shots. These help your bone marrow explode or grow quickly so you get you immune system back soon. The only hitch there is when they grow, they grow inside you bones at a rapid rate. The pain is hard to describe. I have it in my skull, jaw bone, sternum and pelvis. Excrutiating. Feels like someone is inside your bone with a hammer or jack hammer. It last for about 20 minutes after you lay down, but happens each time you get up and sit back down. The good thing about this is that that last time I had these shots, I really wasn't getting alot of bone pain, my marrow had been through so much chemo it was tired of regenerating itself, so maybe, just maybe, its the donor's marrow that is kicking my ass! So as I lay one fight to rest, I begin to deal with a new one.

My lower lip has now become on big sore, my tongue has dead tissue all over it. I have a suction hose. Brett hates it. He puts in ear plugs when I pull it out, but I can't stand it.

So the morning was relatively mild, and then early afternoon I was visited by Rachel, who is looking for participants in a clinical study dealing with CMV. This is a viris which most of us carry, even people without cancer. I carrry the antibody for it and so does my donor and this viris can be deadly during the course of a transplant. This study is being done to see if the test medication stops patients from getting the virus. Out of every three people, one of us get a sugar pill. During this discussion I was getting quite sick to my stomach and didn't want to be rude, since questions were going back and forth between she and Brett. She had me sign the forms and as she walked out the door, I was launching my lunch, quite violently I might add. These are times when Brett just doesn't know what to do. I motioned for a cloth to wipe my face and my nurse came in and started to take over from there. The Rep Rachel did come back, but I still had my head in the bucket. Finally it was all over. I was wiped out, in fact I still am. But that might be due to the fact I hit the pain button over and over while the bone pain was doing its number on me. So it looks like the chemo damage is on its last leg of 2 to 3 more days, and then its onto Host Vs. Graft Disease. Also looks like I will be home for Thanksgiving! But I highly doubt I will be cooking. Good luck to all you barrel racers! I miss iT....have fun out there..could be worse, you could be here with me sharing a bucke!

I am Really high today

2007-11-07T12:40:00.000-08:00

it took me 10 times to log in, the pain is at its highest, so I guess I need to be too. They gave me a sucktion tube like in the dentist office to suck out the mucas and spit that is coming from my mouth. some of it is bloody. but its better then spitting it out all day. but i am stoneeeeeed. it was the only way to help with the pain, now i still have some pain, but don't care about it as much. they also gave me a special milkshake to drink so i can get nutrients. i WILL NOT have feeding tube so I will have to choke down the mikshakes...I don't dare get up and walk tjhrough the halls by myself...i will just sit her and watch soaps and suck the spit out of my mouth. its amusing me enough.

Oh and for all of you who leave comments, THANK YOU..its nice to read them and keeps me going..thanks so much..:-))))