Max is doing really well. He had a break down while we were on vacation and one when we got back. These break downs have been really destructive and he has to be put in a hold. He loses "points" which are an important part of his advancement and earning priviledges.
The last couple weeks he seems to have realized that he is hurting himself with these weird episodes and he has really buckled down and is earning his points everyday and is trying hard with the counselors etc.
We have been very blessed the last month or so to have met people who have also had to put their children in one of these Residential Treatment Facilities or RTFs. We have heard only good things like, "It was a hard year, but she came out of it with a positive attitude" or "Yes, we had a couple of rocky years afterwards but he is married and has a family and a good job" etc. These comments from people who've been here have done a lot to cheer and uplift me. It is hard being without one's child. I miss him. When I go to visit him it feels weird and unnatural. It is like "they" are his family now. It is just weird.
In so many ways, I can't wait till he comes home and in many ways I'm terrified of the time when he does. He will start to earn passes soon and he'll be able to go out with us for a few hours. We are hoping that by Nov, he will have earned enough for a 6 or 8 hr pass to come home for Thanksgiving and that he will be able to spend Christmas day with us. He is working really hard right now to get a pass for his birthday (Oct 26th) so that he'll be able to go out with us for the day. I hope and am praying he will be able to do it, if he doesn't I think it'll be a big set back emotionally for him.
We knew there would be dangers in putting him in a place where there are a lot of children with really bad problems. His language has gotten really bad (though he never swears in front of us, thankfully!). If he ever had a testimony of the Gospel, he doesn't anymore. In fact, he complained to his counselor that he doesn't believe in the things we believe in and that because of our beliefs we have unrealistic expectations of him. He has also picked up lots of lingo and language - it is almost like prison language. Maybe it is just institutional language, but he has been nothing but wonderful and polite whenever we visit him.
He is allowed to call twice a week and he does always call and doesn't want to hang up when we are talking. A couple of times he has called and started crying (once when we were on vacation) and begging to come home. Telling me that it is worse than the orphange there and that he is only learning bad things because the kids are so bad and try to solve their problems through fist fights etc. These calls are heart wrenching and sometimes I do just feel like driving up there and yanking him out. I know it would be a mistake though. In fact, the more they work with him there, the more they discover that his problems are even deeper and more complex then we originally thought.
Sometimes I could just scream, knowing that for the most part, uncaring and uneducated adults did this to him. For the most part, it isn't his fault. But, when I calm down, I know that he chose us as much as we chose him. We are his parents - that is eternal - and we are the ones to give him love, a home, and to teach and raise him up to be a good citizen, to be useful and helpful and to treat others with respect. It is a big job, but we are up for it - we know it.
Sunday, September 21, 2008
Saturday, September 20, 2008
Vacation
This was such a big deal. We could have never done this without 1) enough frequent flyers for everyone 2) the generousity of family who let us stay with them and 2 special family members who paid for us to stay in a hotel while in No. CA 3) The generosity of a sister/in-law who let us use her car the whole time we were in UT 4) The generosity of family who paid our entrance fee to many places, fed us, and did lots of things to relieve the financial pressure 5)The Walk-A - Thon my friends in Vienna held for me. The money really wasn't for us to take a vacation. It was for medical costs etc., but this trip went to my health and well-being and we did save a portion of those funds raised for us, to use for our trip. How can I thank all those people for helping us so much?? 6)A credit card ( I know that doesn't count as 'free', but sometimes 'deferment' is great too! Despite all of the help we had, we still ended up adding a big chunk to our CC, but there are times in life when we have to do important things and deal with the financial consequences later. I have no doubt this was one of those times.
Why was this trip so important? There are so many reasons on so many levels for me, but one of the things deep in my heart, was a desire for my children to see and be reminded of how much family they have, of how many people love them and are there for them and pray for them. Part of this was introducing them to my brother whom Alexander hasn't seen since he was 2. I haven't seen him since then either - 12 yrs! My brother now has two little girls - more Rosie's age, but the boys had a blast with them too and it was just such an enjoyable visit. I got to renew, reminice etc with my brother and his wife and I also got to know their children a little bit. It was important for the boys too - especially Alexander to get to know their Uncle. Up till now they've only had Uncles on Robert's side.
We also got to visit my other brother - stepbrother technically - in Las Vegas. I haven't seen him in 12 years either. He and his wife and 2 children (more the boys' ages) have just lived too far away whenever I come home to visit and it was so good to spend time with them and try to catch up on 12 years of comings and goings.
We got to see all our family except for one cousin on my side and two sisters on Roberts side (they are in other states). We saw children, grandchildren, parents, grandmas and grandpas, aunts, uncles, cousins, nieces, nephews etc and we even got to visit friends. (I'm just talking about my family and Robert's immediate family here - if we visited all of Robert's uncles and aunts and cousins it would take years!)
We had a little reunion with 3 of the families we traveled to China with. It was so fun to see their girls and how much they had changed in the year and a half since we got back with Rosie. Rosie was actually the most babyish of the group, with the other girls speaking quite a bit more than she does and she was the only one in diapers, but she is the youngest so we aren't too worried. It was great to get together with these families - we actually grew kind of close to them during those couple weeks in China-- maybe because it was such an exciting and emotional journy and we really shared our thoughts during that brief time, it was just wonderful to re-connect with them and see how they've grown by having these little Chinese princesses changing their lives.
We had a little downtime to swim in the pool in our hotel in St. George and my cousin met us there with her two daughters and that was a blast too - just hanging out in the pool and talking. In a way, I wish we could have done that everyday with everyone we visited, but it was just impossible. We needed to see everyone -- I had an almost compulsion or force driving me before we left and telling me that we needed to visit everyone. In retrospect, I feel part of this was my need to say "good-bye" to everyone. Before we left, I just knew I'd never be back West again. I knew that for most of those people, I'd never see them again. Afterall, the doctors only give me less than another year to live and that is what the statistics say too. After we'd leave each person or family, I'd feel an almost depression drape over me as I mentally said my final good-byes to them.
I don't want it to sound like I was depressed for the whole trip because I certainly wasn't. I had a great time. I was healthy and energetic every single day. I felt good and looked forward to each person we visited. It was just something I'd go through at every good-bye or even when we left Utah, it felt as if my heart were breaking - knowing I'd never be back, never see those mountains again or hug those people again. When we left California, my grandma and Ken came to say good-bye in the morning before we left for the airport. I lost it and just couldn't stop crying. I couldn't imagine never seeing them again. I couldn't imagine never being in my home town again. There are a lot of people I love in CA and that is where my roots are. It was really hard to leave with that feeling that it was my last visit.
I have to say that since we've arrived back in VA, I've had a 100% turn around. I've realized that I've focused too much on dying and just not enough on living. To be fair to myself (and Heaven knows I always want to be fair to myself) part of that was just being so sick and sleeping so much, of course, I'm going to focus on dying...it is hard to be positive when I'm vomitting all over the place. I am now trying to focus on being energetic, healing myself, even doing visualization - like envisioning the chemo knocking out those cancer cells. Living and focusing on life. I know I'll be back. Utah, California, who knows maybe even some other states out west. I do miss the west so much, the weather, the people, the lifestyle, our families. But, I now KNOW that I'll be back. I'm feeling better every day. The Reliv is helping, your prayers are helping, my family's love is helping, my friends are helping, my husband is always helping (o.k., technically he is family, but he deserves another mention), The Lord is always here for me.
It is complicated to explain probably because it is complicated to understand. So many people have this awful disease. So many die from it. Some do live though. Some live. Some live and even conquer cancer. Surely the Lord loves each one of His children equally, right? I guess that is how my ideas have kind of evolved to what I explained in my last post. The Lord Helps Those Who Help Themselves. I have decided that that is my job, my responsibility - to give thanks, to live life to the fullest, to enjoy, to serve and to show my gratitude, to take care of the temple He has given me. I must confess that after I had Breast Cancer the first time, I went right back to my evil ways - eating that which was not good for me, not exercizing enough, beyond that though -- inviting too much stress into my life, stressing over things that didn't need that level of my concern and attention, biting off more than I could chew, running faster than I could manage. Doing all the things that many of us do, but which we all know we shouldn't be doing. I'm not going to do it this time. Sure, I'm still going to have the occasional piece of cheesecake - otherwise I'd be violating the law about enjoying life, right?
Back to our vacation -- it was marvelous. The boys had a great time and Rosie had so much fun meeting all her cousins and getting to play with children everywhere we went. What could be better. Of course, it was sad that Max wasn't there, but I was at peace with the decisions we'd made and that he was in the place he needs to be so that next time we go out West, he can be with us and it can be a positive experience for him and for all of us too.
Why was this trip so important? There are so many reasons on so many levels for me, but one of the things deep in my heart, was a desire for my children to see and be reminded of how much family they have, of how many people love them and are there for them and pray for them. Part of this was introducing them to my brother whom Alexander hasn't seen since he was 2. I haven't seen him since then either - 12 yrs! My brother now has two little girls - more Rosie's age, but the boys had a blast with them too and it was just such an enjoyable visit. I got to renew, reminice etc with my brother and his wife and I also got to know their children a little bit. It was important for the boys too - especially Alexander to get to know their Uncle. Up till now they've only had Uncles on Robert's side.
We also got to visit my other brother - stepbrother technically - in Las Vegas. I haven't seen him in 12 years either. He and his wife and 2 children (more the boys' ages) have just lived too far away whenever I come home to visit and it was so good to spend time with them and try to catch up on 12 years of comings and goings.
We got to see all our family except for one cousin on my side and two sisters on Roberts side (they are in other states). We saw children, grandchildren, parents, grandmas and grandpas, aunts, uncles, cousins, nieces, nephews etc and we even got to visit friends. (I'm just talking about my family and Robert's immediate family here - if we visited all of Robert's uncles and aunts and cousins it would take years!)
We had a little reunion with 3 of the families we traveled to China with. It was so fun to see their girls and how much they had changed in the year and a half since we got back with Rosie. Rosie was actually the most babyish of the group, with the other girls speaking quite a bit more than she does and she was the only one in diapers, but she is the youngest so we aren't too worried. It was great to get together with these families - we actually grew kind of close to them during those couple weeks in China-- maybe because it was such an exciting and emotional journy and we really shared our thoughts during that brief time, it was just wonderful to re-connect with them and see how they've grown by having these little Chinese princesses changing their lives.
We had a little downtime to swim in the pool in our hotel in St. George and my cousin met us there with her two daughters and that was a blast too - just hanging out in the pool and talking. In a way, I wish we could have done that everyday with everyone we visited, but it was just impossible. We needed to see everyone -- I had an almost compulsion or force driving me before we left and telling me that we needed to visit everyone. In retrospect, I feel part of this was my need to say "good-bye" to everyone. Before we left, I just knew I'd never be back West again. I knew that for most of those people, I'd never see them again. Afterall, the doctors only give me less than another year to live and that is what the statistics say too. After we'd leave each person or family, I'd feel an almost depression drape over me as I mentally said my final good-byes to them.
I don't want it to sound like I was depressed for the whole trip because I certainly wasn't. I had a great time. I was healthy and energetic every single day. I felt good and looked forward to each person we visited. It was just something I'd go through at every good-bye or even when we left Utah, it felt as if my heart were breaking - knowing I'd never be back, never see those mountains again or hug those people again. When we left California, my grandma and Ken came to say good-bye in the morning before we left for the airport. I lost it and just couldn't stop crying. I couldn't imagine never seeing them again. I couldn't imagine never being in my home town again. There are a lot of people I love in CA and that is where my roots are. It was really hard to leave with that feeling that it was my last visit.
I have to say that since we've arrived back in VA, I've had a 100% turn around. I've realized that I've focused too much on dying and just not enough on living. To be fair to myself (and Heaven knows I always want to be fair to myself) part of that was just being so sick and sleeping so much, of course, I'm going to focus on dying...it is hard to be positive when I'm vomitting all over the place. I am now trying to focus on being energetic, healing myself, even doing visualization - like envisioning the chemo knocking out those cancer cells. Living and focusing on life. I know I'll be back. Utah, California, who knows maybe even some other states out west. I do miss the west so much, the weather, the people, the lifestyle, our families. But, I now KNOW that I'll be back. I'm feeling better every day. The Reliv is helping, your prayers are helping, my family's love is helping, my friends are helping, my husband is always helping (o.k., technically he is family, but he deserves another mention), The Lord is always here for me.
It is complicated to explain probably because it is complicated to understand. So many people have this awful disease. So many die from it. Some do live though. Some live. Some live and even conquer cancer. Surely the Lord loves each one of His children equally, right? I guess that is how my ideas have kind of evolved to what I explained in my last post. The Lord Helps Those Who Help Themselves. I have decided that that is my job, my responsibility - to give thanks, to live life to the fullest, to enjoy, to serve and to show my gratitude, to take care of the temple He has given me. I must confess that after I had Breast Cancer the first time, I went right back to my evil ways - eating that which was not good for me, not exercizing enough, beyond that though -- inviting too much stress into my life, stressing over things that didn't need that level of my concern and attention, biting off more than I could chew, running faster than I could manage. Doing all the things that many of us do, but which we all know we shouldn't be doing. I'm not going to do it this time. Sure, I'm still going to have the occasional piece of cheesecake - otherwise I'd be violating the law about enjoying life, right?
Back to our vacation -- it was marvelous. The boys had a great time and Rosie had so much fun meeting all her cousins and getting to play with children everywhere we went. What could be better. Of course, it was sad that Max wasn't there, but I was at peace with the decisions we'd made and that he was in the place he needs to be so that next time we go out West, he can be with us and it can be a positive experience for him and for all of us too.
I'm Back...
It is with great trepidation that I pulled up our Blog today. My, it has been so long since I've updated or visited here, I'm a little afraid of all the info I need to plug in. I've started to get complaints from friends, so I'll do my best to let everyone know what is going on with the Baxters these days.
Our vacation was wonderful. It was no less than fantastic. Somehow I was healthy and felt good for the whole 2 weeks. I must say I attribute this first to the Lord; He knew how important this trip was to me - it was so much more than a vacation and I definitely must say that I felt His uplifting hand many times when I started to feel tired or my tummy started to feel "chemo-y".
Secondly, I attribute my good health and overall well being to my new nutrition regime. About a week before we left for vacation, I started on a product called "re-liv" (which for me was quite aptly named). They are nutrition shakes which I am trying to drink several times per day to flood my body with vitamins and minerals. Sometimes I only get one in per day, but I'm shooting for 2-3 per day to really beef up my immune system - well, to try to get it healthy and maybe get to the point of beefing it up. I am a bit stunned at how much this product is helping me. I recovered from chemo much quicker than usual this time and actually skipped some of the worst steps altogether. I will talk about this more later. I think I'm going to start a health link so I can keep track of my tumor markers etc better, so I will document there if reliv is really helping me or if I'm just experiencing a placebo effect - either way, I'm happy.
Truthfully, I believe it is a combination of the nutrients etc and the Lord. I believe in Miracles - no doubt about it, they are happening everyday. My thought though, is that the Lord prefers to use our environment to create His miracles. He could, of course, just heal me now, zap all the tumors, get rid of the nasty cancer cells, etc. He does do this sometimes, but I've found that He likes us to try all we can ourselves and then He likes to use those tools we give Him from our own trials and attempts to help ourselves.
For example, I've been reading a lot about people who have survived Cancer. When I was in CA, a friend of my dad's gave me these great books by Greg Anderson. He was diagnosed with metasticized lung cancer in 1984 and given 30 days to live. He sunk into a depression and prepared to die and as he was slowly dying he decided he didn't want to die. He began to seek out survivors to see what they had done. It is a great book and he is still alive today. His basic message is; decide to live, cancer is a message to make a change in your life - heed the message and make the changes. Be positive, be spiritual, love yourself and your neighbors, eat better, exercize more, take nutritional supplements and drink more water (he says all cancer patients are dehydrated) do all the conventional things that conventional medicine advises - but be sure you believe in your doctors and in the regime they recommend for you. Once you have a plan - believe in it and everyday make the most of your life - be positive, be cheerful, laugh, love, forgive and stay very close to God.
It is nothing earth shaking or new, but by 1989 he was cancer-free and has been ever since. Wow. I can do that and I've been trying my best. There is more to it, of course, but in reading the books and starting to practice these things, I give the Lord tools to heal me. Does that make sense? In taking the shakes and flooding my body with nutrients, I'm giving the Lord tools to naturally heal and repair my immune system to fight off the cancer. I'm not saying the Lord needs these tools - I'm saying, I think He likes them. I think He wants me to work hard to repair myself - to show Him that I want to live and that I believe He can heal me. I'm also showing Him that I know my body is a Temple - an amazing temple that can create life, that can repair itself from disease and viruses, a temple that could only have been created by Him.
I you have ever been ill or never want to be, or if you or anyone you know or love has ever had cancer, read his books. Greg Anderson, Cancer Conquerer, 50 Things To Do When The Doctor Says It's Cancer, and the all around, non-specific, The 26 Non-Negotiable Laws of Good Health (okay, I'm not too sure of the title on that one, but if you check it out on Amazon you'll find it). He has other books too and he has a website, www.cancerrecovery.org it is worth checking out.
Also, I think this reliv is going to be worth checking out. As I said, I'm going to be documenting my recovery and side effects of the chemo etc and see how it goes. One of the first things I can already say is that I have been able to stop taking some of my medications. I do take medications for the pain - that is necessary at this point for me to be able to move at all. Unfortunately, the pain medication makes me very sleepy. I started taking some meds to keep me awake, and they worked great in the beginning but after a few weeks, they started to wear off. Eventually, I was back to sleeping for several hours every afternoon again. The doctor put me on Ritalin and that was the only way I could stay awake. It made me edgy and gave me a headache, but hey, I can't spend hours sleeping during the day - I'm home schooling my kids and I have a 3 yr old - I need ENERGY!
Well, the good news with this reliv is it gives me ENERGY - yeah! I can't say how important that is to me. I've been able to stop the Ritalin (which I not only hated, but it cost about $100 per month - and that is just the co-pay). So, I'm pretty thrilled with it so far.
Here is an overview of how each month usually goes for me:
I have chemo. I feel okay on Chemo Day and on Day 2 and Day 3. I usually wake up on Day 4 vomiting and with diahhrea. I spend 7-12 days unable to get out of bed except to run to the toilet. I keep a vomit bucket nearby and I vomit a lot. I do not eat or drink anything for 4-7 days. I get sicker and sicker and go to the E.R. at least once to get rehydrated, sometimes I am in such bad condition, I get admitted to the hospital for a couple days. During this 7-14 day period, I usually can't talk or interact with my family (or anyone else) because it makes me vomit. Basically, I spend the whole time trying not to vomit. It is truly awful. Around Day 10 - 14, I wake up and feel better. I'm able to eat normally and can get some fluids down. The next day, I wake up with mouth sores. These get worse and worse for 3-5 days. Eating and drinking is painful and just unpleasant. Talking hurts, brushing my teeth is miserable. Around Day 20 my mouth starts to feel better. I can eat and drink normally, but water still makes me nauseated. I have about 10 pretty good days until I have chemo again and start the whole thing all over.
It isn't the end of the world by any means, but it is lots of days when I don't get to be a part of life - I don't have any idea what is happening with my family, the boys take care of Rosie and everything else and it is a blur until it is over. I don't remember anything anyone tells me from this time. I do treasure the 10-14 good days I have at the end of the month and I am very grateful that the chemo seems to be keeping the cancer from spreading. I'm not really much worse that I was when I got diagnosed (from what we can tell). When we see the results for the CAT scans/ MRIs/Bone Scans etc, it seems to us that my body is in about the same condition as it was a year and a half ago. Not too bad.
Anyway, this month, after being on the reliv for about 2 and a half weeks, we noticed a huge, huge difference in the chemo. It hit me on Day 4 and I was only in bed about 4 days. I was still really weak and tired but I was able to come downstairs everyday after that. Granted, much of the time I was asleep on the couch for Days 7-10, but I was able to Eat and Drink every single day - even the days I was in bed. No E.R. By day 7 I was able to attend Max's meetings - yes, I was weak and tired but I was up and about and most of all, I was able to eat and drink and I never vomitted once. Again, I attribute this to the Lord and to the Reliv. I will keep you aprised of how things develop next month. I'm pretty excited though.
When we got back from vacation, we made another decision that we'd been considering the last couple months. I changed my oncologist. I have been going to Georgetown since my original diagnosis in 2000 and I've always felt confident in the care I've received. It is a renowned Hospital and a teaching hospital that has a huge emphasis on Cancer - the Lombardi Cancer Center is cutting edge and has all the best/latest and greatest technology.
The problem was for me, I realized, I was just along for the ride. As a patient, I wasn't really considered as a decision maker. My doctor was very smart and definitely knows everything about chemo, but I didn't feel like she had time for me. I only got to see her once a month before my chemo and she wouldn't spend more than about 5 minutes with me (literally). When I would ask her about lots of problems I was having, she always attributed them to something else (even though I knew it was from the chemo) and she would refer me to other doctors. You know, when you have cancer and are on chemo, other doctors don't want to see you, they always say, well, what did your oncologist say? It was very frustrating. Anyway, my mom found a brand new cancer center that is about 1/2 hour away from our home, compared to the 1 1/2 getting to Georgetown, the hassels with traffic and parking etc and the hassles with getting around a huge hospital - it was just exhausting. I really like my new oncologist and feel comfortable and confident and feel like I will be a part of my treatment options. That is a good feeling and I'm excited to get started with her.
I went on and on about me and my health again so I'll start a new post to talk a little about our vacation and tell everyone about how Max is doing. As always, thank you to all of you who actually read this blog and care about the development of me and my family. Your thoughts and prayers are invaluable and when I said that I actually felt the involvement of the Lord during our vacation - that is because of prayer, I know it. Your prayers are helping me so much and they are telling the Lord that I matter to you, I wish I had a better way to say Thank You, but I do say Thank You, keep thinking positive thoughts too.
Our vacation was wonderful. It was no less than fantastic. Somehow I was healthy and felt good for the whole 2 weeks. I must say I attribute this first to the Lord; He knew how important this trip was to me - it was so much more than a vacation and I definitely must say that I felt His uplifting hand many times when I started to feel tired or my tummy started to feel "chemo-y".
Secondly, I attribute my good health and overall well being to my new nutrition regime. About a week before we left for vacation, I started on a product called "re-liv" (which for me was quite aptly named). They are nutrition shakes which I am trying to drink several times per day to flood my body with vitamins and minerals. Sometimes I only get one in per day, but I'm shooting for 2-3 per day to really beef up my immune system - well, to try to get it healthy and maybe get to the point of beefing it up. I am a bit stunned at how much this product is helping me. I recovered from chemo much quicker than usual this time and actually skipped some of the worst steps altogether. I will talk about this more later. I think I'm going to start a health link so I can keep track of my tumor markers etc better, so I will document there if reliv is really helping me or if I'm just experiencing a placebo effect - either way, I'm happy.
Truthfully, I believe it is a combination of the nutrients etc and the Lord. I believe in Miracles - no doubt about it, they are happening everyday. My thought though, is that the Lord prefers to use our environment to create His miracles. He could, of course, just heal me now, zap all the tumors, get rid of the nasty cancer cells, etc. He does do this sometimes, but I've found that He likes us to try all we can ourselves and then He likes to use those tools we give Him from our own trials and attempts to help ourselves.
For example, I've been reading a lot about people who have survived Cancer. When I was in CA, a friend of my dad's gave me these great books by Greg Anderson. He was diagnosed with metasticized lung cancer in 1984 and given 30 days to live. He sunk into a depression and prepared to die and as he was slowly dying he decided he didn't want to die. He began to seek out survivors to see what they had done. It is a great book and he is still alive today. His basic message is; decide to live, cancer is a message to make a change in your life - heed the message and make the changes. Be positive, be spiritual, love yourself and your neighbors, eat better, exercize more, take nutritional supplements and drink more water (he says all cancer patients are dehydrated) do all the conventional things that conventional medicine advises - but be sure you believe in your doctors and in the regime they recommend for you. Once you have a plan - believe in it and everyday make the most of your life - be positive, be cheerful, laugh, love, forgive and stay very close to God.
It is nothing earth shaking or new, but by 1989 he was cancer-free and has been ever since. Wow. I can do that and I've been trying my best. There is more to it, of course, but in reading the books and starting to practice these things, I give the Lord tools to heal me. Does that make sense? In taking the shakes and flooding my body with nutrients, I'm giving the Lord tools to naturally heal and repair my immune system to fight off the cancer. I'm not saying the Lord needs these tools - I'm saying, I think He likes them. I think He wants me to work hard to repair myself - to show Him that I want to live and that I believe He can heal me. I'm also showing Him that I know my body is a Temple - an amazing temple that can create life, that can repair itself from disease and viruses, a temple that could only have been created by Him.
I you have ever been ill or never want to be, or if you or anyone you know or love has ever had cancer, read his books. Greg Anderson, Cancer Conquerer, 50 Things To Do When The Doctor Says It's Cancer, and the all around, non-specific, The 26 Non-Negotiable Laws of Good Health (okay, I'm not too sure of the title on that one, but if you check it out on Amazon you'll find it). He has other books too and he has a website, www.cancerrecovery.org it is worth checking out.
Also, I think this reliv is going to be worth checking out. As I said, I'm going to be documenting my recovery and side effects of the chemo etc and see how it goes. One of the first things I can already say is that I have been able to stop taking some of my medications. I do take medications for the pain - that is necessary at this point for me to be able to move at all. Unfortunately, the pain medication makes me very sleepy. I started taking some meds to keep me awake, and they worked great in the beginning but after a few weeks, they started to wear off. Eventually, I was back to sleeping for several hours every afternoon again. The doctor put me on Ritalin and that was the only way I could stay awake. It made me edgy and gave me a headache, but hey, I can't spend hours sleeping during the day - I'm home schooling my kids and I have a 3 yr old - I need ENERGY!
Well, the good news with this reliv is it gives me ENERGY - yeah! I can't say how important that is to me. I've been able to stop the Ritalin (which I not only hated, but it cost about $100 per month - and that is just the co-pay). So, I'm pretty thrilled with it so far.
Here is an overview of how each month usually goes for me:
I have chemo. I feel okay on Chemo Day and on Day 2 and Day 3. I usually wake up on Day 4 vomiting and with diahhrea. I spend 7-12 days unable to get out of bed except to run to the toilet. I keep a vomit bucket nearby and I vomit a lot. I do not eat or drink anything for 4-7 days. I get sicker and sicker and go to the E.R. at least once to get rehydrated, sometimes I am in such bad condition, I get admitted to the hospital for a couple days. During this 7-14 day period, I usually can't talk or interact with my family (or anyone else) because it makes me vomit. Basically, I spend the whole time trying not to vomit. It is truly awful. Around Day 10 - 14, I wake up and feel better. I'm able to eat normally and can get some fluids down. The next day, I wake up with mouth sores. These get worse and worse for 3-5 days. Eating and drinking is painful and just unpleasant. Talking hurts, brushing my teeth is miserable. Around Day 20 my mouth starts to feel better. I can eat and drink normally, but water still makes me nauseated. I have about 10 pretty good days until I have chemo again and start the whole thing all over.
It isn't the end of the world by any means, but it is lots of days when I don't get to be a part of life - I don't have any idea what is happening with my family, the boys take care of Rosie and everything else and it is a blur until it is over. I don't remember anything anyone tells me from this time. I do treasure the 10-14 good days I have at the end of the month and I am very grateful that the chemo seems to be keeping the cancer from spreading. I'm not really much worse that I was when I got diagnosed (from what we can tell). When we see the results for the CAT scans/ MRIs/Bone Scans etc, it seems to us that my body is in about the same condition as it was a year and a half ago. Not too bad.
Anyway, this month, after being on the reliv for about 2 and a half weeks, we noticed a huge, huge difference in the chemo. It hit me on Day 4 and I was only in bed about 4 days. I was still really weak and tired but I was able to come downstairs everyday after that. Granted, much of the time I was asleep on the couch for Days 7-10, but I was able to Eat and Drink every single day - even the days I was in bed. No E.R. By day 7 I was able to attend Max's meetings - yes, I was weak and tired but I was up and about and most of all, I was able to eat and drink and I never vomitted once. Again, I attribute this to the Lord and to the Reliv. I will keep you aprised of how things develop next month. I'm pretty excited though.
When we got back from vacation, we made another decision that we'd been considering the last couple months. I changed my oncologist. I have been going to Georgetown since my original diagnosis in 2000 and I've always felt confident in the care I've received. It is a renowned Hospital and a teaching hospital that has a huge emphasis on Cancer - the Lombardi Cancer Center is cutting edge and has all the best/latest and greatest technology.
The problem was for me, I realized, I was just along for the ride. As a patient, I wasn't really considered as a decision maker. My doctor was very smart and definitely knows everything about chemo, but I didn't feel like she had time for me. I only got to see her once a month before my chemo and she wouldn't spend more than about 5 minutes with me (literally). When I would ask her about lots of problems I was having, she always attributed them to something else (even though I knew it was from the chemo) and she would refer me to other doctors. You know, when you have cancer and are on chemo, other doctors don't want to see you, they always say, well, what did your oncologist say? It was very frustrating. Anyway, my mom found a brand new cancer center that is about 1/2 hour away from our home, compared to the 1 1/2 getting to Georgetown, the hassels with traffic and parking etc and the hassles with getting around a huge hospital - it was just exhausting. I really like my new oncologist and feel comfortable and confident and feel like I will be a part of my treatment options. That is a good feeling and I'm excited to get started with her.
I went on and on about me and my health again so I'll start a new post to talk a little about our vacation and tell everyone about how Max is doing. As always, thank you to all of you who actually read this blog and care about the development of me and my family. Your thoughts and prayers are invaluable and when I said that I actually felt the involvement of the Lord during our vacation - that is because of prayer, I know it. Your prayers are helping me so much and they are telling the Lord that I matter to you, I wish I had a better way to say Thank You, but I do say Thank You, keep thinking positive thoughts too.
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