Friday, December 26, 2008
Today, I personally felt very close to our Savior. Most of the day I just felt so happy and joyful, watching my boys doing the funnest, bestest thing in the world --(getting all the gifts they wanted) while I held Rosie who wasn't feeling too well and didn't much want to open up presents. Two totally different aspects of my children were brought together as I watched them and could almost hear the thoughts they were thinking as either they or their sibling received each gift.
We got Rosie some baby dolls this year, she also got a little high chair and stroller for one of the babies. She is in LOVE! She hasn't shown any interest in babies up till now, she is only interested in animals, but this baby says a few phrases, "I love you mommy", "I'm thirsty" etc and Rosie is just feeding her, burping her and cuddling her. It couldn't be cuter.
The boys all got stuff they wanted and I think they were pretty happy. I love that I know each one of them so well. The big present this year went to Daniel who got a pair of turtles. I am a big turtle fan -- they are such great pets and so, so cute and I really think he has worked hard this year to show us he can handle the responsibility and I think he really needs someone who loves him unconditionally (according to him) and his turtles will do all this. I'm excited to watch their relationship grow. He has already cleaned out the acquarium and is upstairs setting it all up with Robert. Neat.
They also got a ping pong table. We had one in Vienna which the boys loved, now that we have some space in the basement we can put another table in there. I'm pretty excited about that too since it will give them all a chance to play at something they enjoy.
Alexander and Max got mostly electronic type stuff and Daniel got quite a bit of creative stuff/build it type of stuff. They all got good gifts from aunts,grandparents and greatgrandparents and it was therefore, once again, a pretty grande experience. In fact, Rosie still hasn't opened up all her presents, which is fine too. Tomorrow we'll be able to do it again!! It wasn't that she got so so many, but that she just wasn't feeling good - hope she's not getting really sick. We've all had a bit of a cold the last few weeks and it is certainly getting tiring.
I got to end up Christmas day by going to the hospital to get some antibiotic infusions. It wasn't the most pleasant way to end the day, but it could have been far worse. Robert ran me into the E.R. on Tuesday night after a week or so of me really feeling bad ended with a fever. Fever is the big no-n0 when you are on chemo so I had to be seen right away. I was admitted and had to stay over on Tueasday night, they wanted to keep me through Friday night when they had all the test results back from the cultures but I begged them to let me go on Weds. so I could be home for Christmas eve dinner and Christmas morning. They acquiessed provided I come in everyday for antibiotic infusions, so, you see, it could have been much, much worse.
That brings me round to my chemo/cancer stuff. I haven't posted about it in a while, but I feel I need to. I don't really know what to say. It has been very difficult for us (me and the medical team that works to keep my body going) to keep my blood counts up. That is to say that I have chemo followed by some shots that elevate my white and/or red blood cell counts enough so that the chemo doesn't kill me. That is okay for a few days and then my counts start to drop again. I feel bad. I feel worse. My blood counts get really low again and I need to get them propped up again either through blood transfusions or shots or whatever they can come up with. Obviously, I can't keep doing this for long. The hope is that my body is going to recover from this in a more normal way and I can start the chemo in a more normal way again. Sigh. It is scarey stuff. If I can't do the chemo, then what?
I have another problem too. I have recently been researching about canal roots and breast cancer and (if you believe some or all of what you read on the internet) it seems there is a connection and that a bio dentist should remove all root canal teeth immediately if you want to combat cancer. That would leave me with two gaping holes in my mouth/smile.
Didn't mean to get on a downer here - YIKES. I am actually quite joyous today, I have so loved just being with my children today, having my mom around and watching Robert play with all the kids (including Scott). I love my family and I love Christmas. Merry Christmas to all - I love you!
Friday, December 19, 2008
What we really wanted to convey to everyone was that it has been a wonderful year for us and for our children. Even though there have been trials, joy seems to keep tipping the scale and we end up with smiles wiping away our tears. We are so grateful to be able to say that. It has been a tough year for all of us. In many ways, Robert and I have clung to each other as if on a life-boat in the rough waters, but each morning we awaken to our children's faces and our dogs excitedly greeting us ...and the waters dry and we are left to feel the Son --drying and energizing us once again.
We pray and pray that Holly will be given more time. Time to raise our children, to fill her husband's life with all the things she promised to do so many years ago, to watch all her children grow and serve missions to spread the Lord's Word,get married, have children themselves. To grow old (okay, older) with her husband and spend some years serving after having been served so many years.
However, after each of those prayers which we echo each night, we must always end with "thy will be done". Those must be the hardest words to say, but we mean them and we know that if the Lord's Will is done, then everything will be alright and that is the most important thing.
We have come to know and love so many during this last year. So many good, kind people - people who hardly knew us, or knew us not at all but were willing to help. We have been warmed by their love and generosity and we have been humbled by their sacrifices.
Once again, we have reflected on how blessed we are to have been of goodly parents - our parents have supported us in so many ways. We are so grateful for our family, friends, all of you.
Merry Christmas and Happy New Year to All!!
Here is part TWO of our newsletter:
Children’s Christmas Letter 2008
Alexander has shown a motivation previously unknown to his family. He gets up each morning at 5:30am to go to Seminary and returns home around 7am to start school. He works hard all day at school and then works hard in the afternoon to get chores done and to take care of mom (especially at making those Reliv shakes she needs so much) and to watch Rosie whenever Mom needs a break. He set his mind to getting healthy and he has lost 30 lbs and is just looking and feeling wonderful. Both Alexander and Daniel took a very interesting class this year; a six week look into two of Shakespeare’s works; Hamlet and Othello. Alexander has begun writing music/lyrics/poetry and other than that, Alexander’s true love, Pokemon, still resides with him. He tries to go to his Saturday league whenever possible and to take part in any competitions that are within driving distance. However, mom’s illness, the family’s busy schedule, and the high gas prices put a big dent in his plans and he certainly didn’t get to go as often as he wanted. We hope in 2009 we’ll be able to cater a little more to his love of Pokemon. He is maintaining a GPA of 3.74
It has been a very difficult year for Max. Since June he has been living in a Residential Treatment Facility (RTF). It was a hard decision to say the least but we finally had to accept that we couldn’t help him any more – we just don’t have the special skills necessary to deal with a child who is in as much pain as he is. Recently we have started family therapy, including Horse Therapy (which we all love) and we think we can see him advancing. He wants to come home, but just can’t stay on track long enough to make the next step sometimes. Anyway, despite some setbacks, we think he may be ready to come home in February. That is our hope. Of course, there will still be lots of counseling and we will still need lots of help (and prayers), but at least he will be here with us, his family. He has gotten huge this year, growing about 4 inches and gaining about 30 lbs! Both he and Alexander are now wearing glasses and they both look even more mature with glasses. Max got a PSP (an electronic gaming device) for his birthday and it is really helping him to fill the empty hours he has at the RTF, he has also started doing puzzles and turning to art to help him through the hard times. We are really pleased that he is finding some constructive uses for his time as that was always a problem with him – he just didn’t like doing anything and was always bored.
This year Daniel has been busier than ever and he has become so much more mature and helpful than we could have imagined. He is just a whirlwind of activity, getting up early every morning to work at school for about 5-8 hours per day and then working like a crazy man to clean house, and see if I need anything or if he can help with anything else. He is the one person who manages to keep a smile on his face most of the day, no matter the stress level going on around him. We have managed (he, Alexander and Holly) to do scripture study most mornings together and it is in part due to Daniel’s reminders that we keep getting the important things in. He still loves Scouts and has become something of a master camper taking a camping trip around once a month and always getting rave reviews from his Scout leaders who seem to truly enjoy his company and his way of always helping out. In Scout Camp this summer he managed to get 5 badges in one week! In school he is carrying about a 3.7 GPA –not bad!
There is so much to say about this sweet little girl, but we do get lots of info about her on our blog so we hope everyone will read it from time to time. Holly hasn’t been too great about keeping it updated, but whenever she feels well, she jumps onto the internet to post a few photos or type in a paragraph or two. Rosie has a love of life that keeps us all going, we have found laughter and joy everyday through her and this has even been on the days when we couldn’t have imagined laughing. Again, we have to thank the Lord for bringing her into our lives.
Here is the rest of our newsletter:
Merry Christmas Everyone. We are all doing well. As with each of you, sometimes we take things day to day and sometimes we struggle but all in all we are doing well; living well, finding joy in life and in each other and looking forward to pulling all the loose ends together in 2009.
Holly’s mom moved out in November and though it is still weird having her gone, we are glad that she is living only 30 minutes away. She is still close enough to help us out with our unending needs but still have her own space. We must admit that our home is very tiny and her section of it was just a little bedroom. She got an apartment much closer to work and we hope she is enjoying her privacy and freedom! We think she has cut about 11/2 hours off her commute! Other than that she is expanding her skills and interests in weaving and has created some beautiful works of art this year through knitting, weaving and she is even making and dying her own yarn. Kudos for keeping Education at the forefront of her life!
Robert continues working long hard days. His office has been very accommodating in letting him take time off when needed to help Holly with her many trips to the doctor. He keeps very busy between work and his church obligations. He is still a Counselor to the High Priest Group leader and has been pretty active with meetings and duties there. He also keeps busy trying to keep our little house from falling apart and throws in the odd nail or screw or mows the lawn or rakes the leaves or redoes all the things he has just completed from his last “Honey-Do” list. In the leftover time, he likes to enjoy life with his wife or one or more of his many, many children. Though only 4 live with him now, the other 4 are never far from his thoughts or actions as he tries to track them down by phone or email to see how they are doing.
Holly’s work has become as varied as her health. She is either running around going to doctor appointments and doing errands or she is laid flat out in bed doing absolutely nothing! It is up and down and we still don’t know what to expect or when, but some days are really good and some are really, really bad. The good news for 2008 though has been the supplement that Holly has begun taking. “Reliv” has certainly helped her by pumping up her immune system and keeping her feeling better than she otherwise would have. Since starting on the Reliv regime she has not been in the hospital once and that is probably the biggest blessing. She still awakes every morning and feels a great sense of gratitude for all that she has. In every trial there is joy and she is so glad to have the Lord with her in this journey.
Your thoughts and prayers have meant everything to us this year. There have been times in the past where we’ve pled for your love and support, but in 2008, we were begging for your prayers and we felt them and were uplifted by them. Through all the trials we found joy, behind black clouds we found silver linings and in facing our fears we found the Lord, always waiting for us to come back and be strengthened by our faith. When we were weak, we found our friends and family; ready to pray, hold our hands, feed us dinner, or drive our children to and fro. Each one of you has created an opportunity in our lives – in spaces where we just couldn’t do it ourselves. Thank you, thank you so much for loving this family by visiting us, emailing or calling us, for giving Alexander and Daniel rides so we could visit with Max. Can you ever realize how important each of those gifts was to us? This is the gift of Christmas. May you too be comforted and uplifted by this gift. Merry Christmas to each of you who read these words and were touched by the acts of service you did for us or for others. All of the best for 2009!
Please take a moment to log onto our blog and read about our incredible children and how they make the gift of Christmas come alive for us. Unfortunately, space limitations forced us to either edit or leave their accomplishments out of this newsletter. Our hope is that you will be so intrigued that you will want the full story, only to be found on our blog: www.baxterfamilyvienna.blogspot.com
With great love for you all,
Robert, Holly, Alexander, Max, Daniel, Rosie, Shasta (the Golden Retriever) and Roxy (our new rescue dog, terrier-mix)
Tuesday, October 14, 2008
Sunday, September 21, 2008
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.
Saturday, September 20, 2008
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.
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.
Saturday, July 12, 2008
Max demonstrates the two foot-ed dig
This is the middle of a heat wave too. You can't tell obviously, but it was so terribly hot and humid, my dad's shirt would be soaked completely and dripping with sweat within about 20 minutes of going outside.
Shasta does her part as inspectress.
I wrote in earlier posts about the above ground swimming pool we bought. I thought the whole pool thing was going to be a Saturday project. Boy, I couldn't have been more wrong. It has taken my dad, my husband and all three of my boys a few weeks to get things in shape to put in this little pool. Yes, it is an Above Ground Pool!! A smallish one. It's a big deal though for several reasons. First, we just have no entertainment budget for the summer so this is going to be something fun for the children to do whenever they like - it is free and it is great exercise for them. The main reason we got it though was for me. The physical therapists recommended that I get as much exercise as possible in a swimming pool; where I wouldn't be bearing my weight. It is amazing too, I can move around really well in the water and it isn't painful, but rather pleasant. It is such a nice feeling to be able to move again - almost like the old days. The best part is that I can pick Rosie up and play with her and even play with the boys again. I just can't say how nice it is to be able to be normal for a little bit. The only problem is that it is very difficult for me to get in and out of the pool, so I can only do it when Robert is home, otherwise, I'm afraid I might get stuck! Here are a few pictures of everyone doing some "groundwork" for the pool. Our backyard is really pretty steep so quite a bit of grading needed to be done.
Thought I'd include this photo just to show how much Alexander has grown. He is huge. Unfortunately, he has put on some weight this year and he is really sensitive about it. I am really sorry that I passed on my Fat Genes to him - he is just like me; loves to eat carbohydrates, especially if they are baked with sugar, and doesn't love exercising that much. He also, like me, eats to relieve stress. The unfair thing for him is that he has two brothers with voracious appetites. Max and Daniel can and do eat all day long and they don't gain an ounce. In fact, poor Daniel, if he doesn't eat all day long, he will lose weight quickly. So Alexander gets to watch everyone else chow down - I know how hard it is. But, that wasn't what I started out to say. His hugeness is not related to his weight but to his height. He has just really shot up this year. One day he was my mom's height (um, ...short) and the next day I noticed him towering over her. I guess he is about 5'9" now. He will be 14 in August. It literally seems like yesterday that I was giving him baths in the kitchen sink. He has turned out to be such a fine adult; funny, interesting, passionate, righteous, sensitive, introspective - I don't know where all that came from, but it is a wonderful combination and I really enjoy talking to him and listening to his stories and his viewpoint on the world. However, with all that said, he was the sweetest little boy; always eager to please me, holding my hand, cuddling with me, thinking I was the smartest person in the world. Sigh. I miss that too.
Here is Rosie, back in the bucket. She loves sitting in little things - bowls, buckets, etc. In fact, the boys have to be careful when they mop or are cleaning that she doesn't climb into the mop bucket!
Here I am with a little hair - this is mid-May.
The blurry figure on the right is my Dad.
Oh look! More Dora stuff, but also, that whole bucket is full of outdoor chalk and outdoor coloring stuff - very cool.
Rosie, Grandpa (Baba), Max and Grandma Sandy (Gigi). There is an unwritten law of at least 40 years that says that no picture will ever be taken of Sandy, ever. That law was laid down before the internet or digital pictures existed but there are lots of stipulations and by laws etc that go with it. For example, if somehow a picture is taken of Sandy, it will immediately be given to her for destruction etc etc. The penalties for disobedience are pretty severe. But, well, my beloved Sandy doesn't know anything about computers or the internet, she has no idea how to use them. There is no way she would ever know that this picture is posted here on my blog. So, with shaking fingers and 40 years of threats ringing in my ears, I boldly place this picture on the internet for all the world to see. I do so at no risk to myself or offspring because there is no way Sandy could ever access this site. The only way she would ever know about this is if.....well, if someone were to tell her about it. Well, I do have an edit button if I ever need it.
The smiling 12 year old after eating some Black Frosting-yuk.
Max, Daniel, Alexander and a nearly naked Rosie -eager to open bday presents. And, yes, that is Christmas wrapping in April. Sigh. Luckily, my boys don't care a bit about stuff like that (and yes, I include my husband in that too!)
Rosie: getting dressed up for the rain.
Dying Easter Eggs - and, yes, that is me. So, at Easter, I was totally bald. I actually have about and inch and a half of hair now - it is a much better look for me, I can assure you.
Yep, here I am trying to soak my feet again. This time, I refuse to move. Hah.
Grandma and Rosie working in the kitchen - getting everything ready to dye Easter eggs - I told you these pictures are random! Rosie calls Grandma "Na". That is it - Na. She calls my Dad "Baba" and she calls my stepmom, Sandy "Gigi". I have no idea where she gets these names, but they are pure Rosie. She has always refused to call Alexander by his correct name too. She called him Ge ge right from the start - it means older brother in Chinese and it stuck. When we try to get her to say Al-ex-an-der, she says Al- ex- ge- ge. Ha ha. Now, however, she has made a change and she has started calling Alexander Ge- gy which sounds a lot like Daddy and also quite a lot like doggy which she has started calling Shasta. Keep Up!
This picture is from May or beg of June. The kids were begging to go swimming. Rosie dragged her little pool into the backyard and Max filled it up with some nice, Arctic hose water. Shasta is the only one who looks comfortable. The buckets they are sitting in are filled up with hot water from the kitchen tap. Other than that, they are having lots of fun!
Max; in the first stages of hypothermia.
I looked through a bunch of the acceptable tests - the IOWA, CTBS, the CAT etc. Some of them were awfully lengthy and I didn't want to totally stress the boys out. Also, I had to get a proctor to administer the tests and the less time they spent taking the tests, the less it would cost us!
On top of that, I just wanted to get an idea of how they were doing - did the stuff sink in or was it in one ear, out the other? I decided to go with the CAT - the California Acheivement Test? Hmm, can't remember what it stands for at the moment, but it is the nationally accepted test, equivalent to the Iowas, but it only takes about 3 hours to take, whereas the Iowa is split into two days of testing, about 3 or 4 hours on each day. yikes.
Anyhoooo....Daniel scored in the 95th percentile and Alexander scored in the 99th percentile. I am so pleased. I have to say I was a little worried since I was so sick this year - the boys ended up working quite independently. But, that makes me all the more proud. They knew how sick I was and they could have gotten away with lots of shortcuts or worse. Instead, they chose to take the high road, even when there was little to no accountability. How grateful I am for my righteous (and smart) sons! Great thanks to my Heavenly Father for trusting me with these sweet souls, where would I be without them?
It was really weird because Max has also been gone for several weeks and before Daniel left we had already been talking about how quiet the house is without Max - the difference is huge. With Max at home, there is always a constant mid-level to upper-level hum, often punctuated by screams, crying, yelling, the sounds of walls being hit etc. All of that is gone without him here. I had no idea that ALL of it was caused by him - either directly or as a result of something he said or did to antagonize his brothers.
Well, with Daniel gone too, it was just eerily silent all week. Rosie and Alexander are our singers, so I could hear them singing quite well all over the house - even Rosie's hums while she plays in her bedroom were audible from wherever I was in the house - amazing.
Daniel had a great- wonderful - fantastic time at camp. I am so thrilled that he did well and had fun. He earned 5 merit badges in one week! Wow. He came home with a leather knife pouch, two baskets and a stool - all of which he had made/woven himself. I'm as proud as a peacock. What a good boy he is.
Rosie could not have been more excited when he walked in the door. She was jumping up and down and saying, "Daniel, Daniel, come play with me!". Poor little girl, with me sick in bed all week and Alexander running around trying to do all the chores and take care of me, he hasn't had much time to play with her. I've tried to entertain her from my bed with coloring, reading etc, but that only goes so far for a three year old!
I think with Daniel gone this week, Alexander realized how much work Daniel does. Hopefully, he will appreciate him a little more? In any case, we all really missed him and are so glad to have him home. Our gratitude to all the Scout leaders who take on this huge task each year - thank you for making this a wonderful experience for our son and most especially for returning him to us safe and sound!
Tony Snow was the White House Press Secretary for Pres Bush for a while. He just seems like such a nice, intelligent, family loving man (whatever your politics are).
He was having chemo at Georgetown - the same place I go. In fact, Robert and I ran into him just about 2 months ago. We were all leaving at the same time and he was oo-ing and ah-ing over Rosie. He helped us into the elevator (yes, with a wheelchair and a 3 year old we often require help!) and we rode down together. He seemed so healthy - his hair thick and dark (okay, I know that isn't an indicator, but in the cancer world, that is the first thing we patients look at!) - he was strong - he was there on his own. I mean usually, when it is getting towards the end, the patients come with family members or friends when they come for their treatments, but he just seemed like he was doing great.
Actually, when he still worked for Bush and, I think for a while afterwards, we would see the security detail waiting around in the hallway - it made it all the more strange for him to just be there by himself. I don't think anyone should go for chemo alone. I'm so grateful that Robert always goes with me and I always feel so awful when I see people getting their treatments and sitting alone. Of course, it may be their preference, but it still breaks my heart - especially if they are elderly.
If you watch the brief interview on this link, you will see where I go to get my treatments. It is the same room where he is sitting for his treatments.
I just could not have been more shocked this morning when Alexander told me that Tony Snow had passed away. Really. It is frightening that he could just be so very healthy one day and that the cancer could devour and kill him so quickly. This is the meanest, cruelest disease. He left behind a wife a several young children.
It has been a terribly long time since my last post; not just in passage of time but in happenings too. I hardly know where to start. Guess I’ll start with myself, since that is the easiest. I got sick again this month. I don’t know what the problem is. It was another really bad time. I spent 9 days in bed unable to move (except for the night Robert dragged me to the ER to get some fluids pumped into me – we spent all night there rehydrating me). Other than that, I just lie in bed, every muscle concentrated on not vomiting – the first 7 days I didn’t even turn on the t.v. or pick up a book – it was awful. Every drop of liquid my mother and husband tried to force into me came back up and food was out of the question. I should be about as skinny as a rail, but no, I’ve got that good European Farmer Stock, lucky me!
The worse part of being in this condition is that I can’t take my medications. This is bad for several reasons – the first and most obvious is that I am in extreme pain – not such a big deal since I am lying unmoving, perfectly still (concentrating on not vomiting) on my bed the whole time. The only time I move is to go to the bathroom and that isn’t too often. This condition leads to bedsores and stiff necks and bad moods when I am more awake. The other problem with not taking my meds is that I go through terrible withdrawal. This makes me sound like a total junky of course, but it is an awful feeling. They do have me on lots of pain meds to manage the bone pain and I also take anti-depressants which also help to manage the pain (bet you didn’t know that!). Anyhow, after a few days of not being able to keep my meds down, I start to go through terrible withdrawal – additional nausea, dizziness, oh, and more bad mood stuff. You may be wondering around now, “hey, what about her kids? – doesn’t she have kids to take care of?”. All I have to say to that is that I’m incredibly blessed to have my mother living here, to have a husband who is always completely comfortable with ‘going with the flow’ and to have at least one son who is always ready to feed all the other children.
Chemo is always uncomfortable, there is always some element of sickness, pain, nausea etc., it is just some months are so, so much worse than others. The doctors didn’t explain this but I suspect that this month it was because my platelets were so low. They had to give me two blood transfusions before they could administer the chemo. Sigh. Sometimes I have to ask myself if….no, I don’t have the luxury to ask myself any questions of the sort – I just need to do this!
We did get more scans done and everything looks okay as far as the tumors go. I mean, no big growth spurts on any of the existing tumors – they did pick up more bone deterioration and some more cracks, chips and breaks in ribs. But, that is to be expected.
Today was my first day of feeling better and I came downstairs, opened my email and found about 400 unread email – can you imagine??! Most of it is junk, but I do feel bad for those who have written me and I haven’t responded. I’m so sorry and will write back to you asap.
On top of all this, I have to update about my children. I don’t know if it has been obvious or not, but this year, I’ve written little about my boys. It is so easy to write about Rosie – she makes such huge progress each month and she is such a happy, life-loving person, it is a joy to write about her and post photos of her progress etc. We enjoy her so much – she keeps us smiling when we feel like crying and most importantly, when we chase the spirit away, she invites Him back! I often feel the Lord purposefully put her in my life for those very reasons and for others too. It is true that when I am so far gone that I don’t feel the Lord with me anymore, I can look into her funny, happy face and feel the Lord’s love for me through Rosie – that may sound odd, but there have been many times in my life when my children or husband have brought me back to the Lord when I was feeling like I was walking too far from Him. How grateful I am for my family – all of them; all of mine and all of Robert’s. What would we do without each one of them/you??
Our boys have struggled a lot this year. Daniel’s struggles have probably been fewer than the other two. Sometimes he is like the amazing rubber boy – things stick for a few minutes and then bounce off of him – allowing him to paste that smile back on his face, give me a hug and tell me he loves me. He has had to do a lot of growing this year, he had to open up to us about his past – about secrets he had been keeping for many years. He made a lot of bad decisions this year, decisions that surprised us, but ultimately, he repented and tried hard each time to get back onto the right track. We are exploring some options for counseling for him this year and hope that he will find a way to finally put all of his past behind him. Daniel loves the gospel though – he loves the Lord and he knows right from wrong and we know that he will be able to find his way, that we’ll be able to help him and that he will grow up to be a good missionary, husband, father, priesthood holder, and a righteous, thoughtful man.
Alexander’s struggles have been complex and complete. He is the one struck hardest by my diagnosis last summer. His life was turned upside down again and the move to the U.S. was complete unwelcomed by him. He loved living in Frankfurt – he loved church there, he had lots of friends, liked where we lived, loved our lifestyle etc. He hates it here and that hurts so much. He is just so lonely. He has not made one friend at church and that is so odd for him – he is the most social, friendly young man and he tried so hard at first, but he quickly came to the conclusion that he is to be an outcast at this ward. I guess at this age (almost 14 now), it is hard to move into a new social situation where everyone has basically grown up together. However, we have seen lots of new youth move into our ward since our arrival and they always seem to hook up with new friends. Maybe it is just a question of personalities; in any case, Alexander is sure that he is avoided because of his weight. He has put on some weight this year and he is really self- conscious about it. I feel so bad for him. Luckily, he has been able to find a league where he can indulge his passion; Pokemon. He gets to go play almost every Saturday and often he plays in tournaments in other parts of VA and even out of State. He has some friends from his League and though they all live far away, at least he has someone he can email with or talk on the phone with, or play online with once in a while. I am really grateful for that, before he realized he had friends at his league he was really despondent and moody all the time.
It is hard to talk about Max. We have had so many problems with him from the very beginning. He is just a challenging child – the last four years we’ve made so much progress with him though, I guess we thought we’d get through all the tough stuff one way or another. He just has so many problems. He really was abused in the orphanage, but more than that, he was an abuser in the orphanage – we knew that, but we’ve also always known that adopting older children wouldn’t be easy – we have always known that we have the Gospel, we have the Lord on our side and we have a strong marriage and an amazing family – who could ask for more to heal wounded souls? Max has always danced right along the edge – often crossing it, but dancing right back with a smile on his face – finding our discomfort, rage, fear, or pain amusing. Last summer, when we got the new diagnosis, Max lost more than a mother. I saw it on his face just like I saw it on all the boys’ faces’ – I watched them lose me and it was the most pain I’ve ever felt. But, when we got the diagnosis, we also lost Max’s sister whom we’d been trying to adopt for nearly 4 years. It was all too much for him and I think it catapulted him over a fence he was bound to climb at some point anyway, but the pain and the losses let him do it immediately; with no regard for us or our teachings or our rules or our love.
It started right away last summer with Max going into overdrive. Both he and Daniel have a condition called RAD – Reactive Attachment Disorder – quite typical of institutionalized children, especially in Eastern Europe/ Russia. These children don’t develop normal attachments in infancy and it affects everything they do for the rest of their lives. Some can grow up to be functional, contributing members of society, but they need lots of help to get there-lots and lots of help. Max also has other realities that fight and drag him down; learning disabilities, low intelligence, short stature…they all combine inside of him to suck away his sense of self and any little bit of confidence he may have. He is a master of over- compensating, but the horror of it is that this little boy who is a victim of careless and caring-less adults, has been left with no conscience, he feels no remorse for the things he does – including raping a 6 year old girl with a stick or sexually abusing his little (adopted) brother. He was constantly in trouble at school all year and ended the year getting suspended for asking a little girl and boy if they had had relations, but used a different word.
Home was no better and we began to get scared – well, I did at least. I actually started locking my bedroom door at night, because I was so unsure of what he might do. We found out a couple of weeks ago. It is a long story, but I’ll shorten it by saying that Max tried to set the house on fire. He set several fires in the basement and garage. It was not obvious at first what was going on and we called in an emergency electrician who showed us (the dumb, blind parents) that the things we were looking at were done purposefully. It all came together along with some other things and we ended up calling the police. What an awful night. Robert and the police officer took Max to the hospital but he ended up being transferred to a mental hospital where he still is now. He has been there just over two weeks now. They have done a lot of testing on him and currently have him taking some medications which may help him, but the fact is that it isn’t safe for him to come home. The mental hospital’s evaluation recommends that Max be transferred to long term residential care. We don’t know yet exactly what this will mean; how often we will be able to see him, if we’ll be able to take him to church with us, etc, etc. So far, all we have are questions, questions, questions.
He calls every evening and I get to talk to him for about 20 minutes. He was having a great time at first, really enjoying the food, getting dessert after every meal, going to the gym every day and living with lots of boys, …it was the same ol’ same ol’ and it fit Max nicely. It has only been the last couple of days that he has been asking to come home. It is so hard. This is our son. We love him. We love him so much, there is actually, despite all I have said, there is actually so much about him that is loveable. I miss him, I’m nervous and scared about his future. I’ve given so much of myself to him, to heal him, to love him, he is my son, our son, it just can’t end like this.
No one is saying this is going to be a permanent situation, but they are saying that he needs at least 6-12 months of intense residential treatment. Who knows where I’ll be in a year? I pray that we will find a way to spend time together this year and that…that someone will step in and help him. We do have a possible angel on the horizon. The Social worker from Max’s previous school has been awesome in helping us and in getting funding for us. She found a counselor for Max who has lots of experience in RAD and in post institutionalized children. He is just wonderful and had just started to come to the house to work with Max when the whole burning down the house thing happened. The county is funding his work with Max and we could not be more grateful. We pray he is the one or that the Lord will send the right person who can reach Max, work with him, and teach him. I know it is possible and have read of success stories, so I just need to keep my faith and to pray for more faith.
Thank you to everyone for your love and prayers. They are helping me so much right now, and Max and my whole family need that reassurance that comes from your prayers. Thank you so much. I will update with more cheerful news soon. But please know, this is just an update to let everyone know what is going on with us. We are actually doing okay though. The Lord truly is on our side and for that we can only be happy. We try to keep an eternal perspective; I know I will have my whole family together again, so when we squeeze through the tight spots and shed the tears, it is okay, we can close our eyes for a second and feel the Lord’s omnipotent arms holding us up.
Tuesday, June 03, 2008
Anyway, on May 22, they lost their youngest (adopted from China) daughter in a driveway accident. She was 5 years old. I found out about it the next day and they have been on my mind and in my prayers. Please, if you are so inclined, check out their blog and remember them in your prayers:
By Saturday afternoon, Robert was so scared he insisted we go to the E.R., which we did. They admitted me and just started filling me full of fluids. My Blood Counts were so low, they were surprised I was still alive. In fact, they didn't believe it and drew my blood again to double check it!! I can only say that your prayers kept me alive through this terrible time.
They kept me for about 4 days, my mom came home early from her conference (sorry mom, but thank you) and I tried so hard to eat and drink, but I just couldn't. Anything I tried to get down just came back up again. It was only a couple days before I ended up back in the E.R. again - this time for almost a week. It was really awful. I hope I never feel that sick again and I hope no one else ever has to go through that.
I just started to feel better this week - after I'd been home from the hospital about 2 weeks. I do feel much better now though and I thank everyone for their thoughts and prayers for me. A huge thank you to the sisters who brought food to my family the first time I was in the hospital when my mom was gone. Also, I'm sorry if I haven't emailed you in a long time. When I finally could get back on the computer again I had over 900 emails. Most of it was junk, but still, it took me forever to sort through it all.
Please don't ever take your health for granted. Give thanks each day that you wake up and feel good. Use your body - work hard, play lots, serve your family, friends and strangers. Oh, how I wish I could!!
Basically, we have all the frequent flyer miles that we had been saving up to go get Anastasia from Russia. So, we have enough for all of us to fly out West this summer. It is really important to me, because we still have family who haven't met Rosie yet. In addition, both Robert and I have relatives who are elderly and between my health situation and theirs we figured we should get there this summer. But, we didn't have enough money for eating and a rental car, so now we will be able to do it. How wonderful.
Finally, we used some of the money to buy a small, above ground pool. This is going to be wonderful for the children this summer and they are so excited about it. However, that isn't the main reason we purchased it. The physical therapist told me that my best exercise opportunity would be in the swimming pool, but it just seemed so hard, logistically, for me to go to the pool. I can't get dressed by myself and I'd have to keep an eye on Rosie and the boys - how would I be able to exercise etc. I just felt like I'd be overwhelmed and exhausted by the time I even got changed into my swimsuit, so, I never went. Robert came up with the idea of putting a little pool in our backyard. We aren't sure yet how I'm going to get in and out of it, but I'm sure we'll figure out something. My dad and stepmom flew out for a quick visit and my dad helped Robert and the boys get the backyard leveled out and ready for the pool. Robert just set the pool up a couple of days ago. Right now, it is about as cold as the arctic ocean but as soon as it warms up, I'll be in there every day, not only exercising but hopefully getting to do something fun with my children.
How grateful we are for the money and all the opportunities it gave us. Amazing that you could change my whole families lives with 2 checks - but you have. Thank you to everyone who participated in the Walk-a-Thon. What marvelous people you are.
Saturday, April 19, 2008
It looks like the husbands of some of my friends even took my cause to work with them and were able to find donors who have never even heard of me. They went to church and I saw the list of names and I know that many of those people struggle to put food on the table for their children, yet somehow they were able to come up with donations for me. I even saw names from the school where my children previously attended - Max's first grade teacher, Daniel's second grade teacher, Alexander's music teacher, parents of my children's friends. Friends of friends and parents of friends who don't know me, but who felt inspired to help. How can I thank each and every one of you? It means so much to me and this money feels sacred and holy and we are so grateful for your love and your sacrifice.
As for the people who did the actual walk, here are a couple of pictures. I didn't want to post anything that really shows faces because I don't have permission, but these are the dearest people. They walked all the way from the house I used to live in to the church we all attended, the love and thought that went even into that small detail, warms my heart. It was a long walk and after that they had to all go and collect the money - much of it from overseas too. I just can't imagine how all this was organized and executed but I am full of love and gratitude because of it.
Thank you to each and every one of you who particpated in this event. I have the list of names (many of whom I don't know) and I look at it all the time - you are in my heart - you are my miracle and I pray that you will be blessed for your sacrifice and kindness.
I am feeling pretty good right now and just got the results back from a brain MRI -- it is negative and that has been great news for us. I am going to start radiation therapy on April 21 - just 10 sessions. They found a fracture in my spine and a big tumor pressing on it. The radiation is going to be to try and shrink a couple of the larger tumors that are causing me pain in my lower back and hips/legs. I pray this will help and that I will be able to walk/get around better afterwards.
Thank you to everyone who prays for me and thinks about me. You give me strength and uplift me and my family and we love you so much for that!
Some of my dear, dear friends relaxing after a long walk.
Here they are walking along the Danube - thankfully they got a good day. Stephanie said it had been raining up till then, but they got beautiful weather for the walk.
Wednesday, March 19, 2008
Robert got to go to the Temple tonight; I'm a bit envious, but oh so happy he got to go. My mom has been taking Wednesdays off so she can stay home with the boys while we go to Chemo. Rosie comes with us and keeps all the nurses entertained. She is always lively and amusing. It is so sweet, she always cuddles up to me while the nurses poke and prode and she rubs my arm and says, "aw...mama ow ow", "aw". Over and over again - she can be so empathetic.
About the title...I am so thrilled, this newest chemo I was on allowed me to grow a little 5 o'clock shadow on my head. It is about as long as Robert's is at the end of the day, but still, it is a little color on my scalp instead of a shiny, white, glowing light bulb! We'll see if it contines to grow or if it will all fall out now. I also got back 1/2 of my eyebrows. They grew from the corner of my eyes to about 1/2 way so the outer part didn't grow back in...oh well, some hair is way better than none!
Thursday, March 06, 2008
On the brighter side.....
My good husband has decided to heed my pleadings and buy me all the stuff I need to start a little business. I have had such a hard time figuring out what I can do. I know I have talent - God has told us that we each have our talent, but it remains elusive to me. So, I have friends with true talent and I watch them and try to figure out how I could do the things they do, and make it into a business where I could make some money...
Then, in November, we had a Super Saturday at church. It is a day of crafts and fun and I usually don't go, cuz, well, I'm craft challenged too. But, I went because I just need to start getting to know the sisters at church and I really needed a day pretending I was just a normal girl having fun. Well, I had a blast. I made some signs which are vinyl lettering on wood planks. Simple. But, it was fun and they look great too. I loved it and immediately decided I could do that as a business.
I've been doing research, trying to see if there is a market, and honestly, I can't figure it out, but we got a great deal on ebay on the machine that does the cutting of the vinyl - yes, more credit card debt, but, this time I should (hope, pray, hope, pray, pray) be able to pay it off. So, we are off and running. Not too fast though...I'm still working on figuring out the software program for the machine - it is complex, but I will do it!! I am thinking that in the next couple of weeks I should have a website on ebay and maybe on deseretauctions.com---whoo hoo.
Right now, I'm working on getting my body to co-operate with all of my grandplans. It's hard when your body won't keep up with your brain. Anyway, I've got lots of MRIs, CTs and other such stuff scheduled for this month to try to figure out why I'm swollen up like a giant eggplant. A Giant, Bald Eggplant. I will post news as I get it.
Sunday, February 03, 2008
Friday, February 01, 2008
The bad news is that my hands and feet are getting worse and worse numbness and cold. Typing is quite difficult as I can't feel and the steriods they give me which are anti-nauseantes blur my vision so I can't see well either. Sigh. Don't mean to complain, but the doctors decided that the numbness is actually quite serious and could lead to a permanent crippled condition and that I needed to get off that chemo right away. It is very unfortunate too because that was the best stuff and the newest too. Avastin and Taxil/Paclitaxil. That was the way to go and I might get back on it again after a while of letting the side effects go. Now I'm on another one called Gemzar (which I believe was also one of the bad guys on Star Trek - wasn't it). Anyway they chose this one because it should aleve the numbness after a few weeks and it can also be used with the miraculous Avastin which I was on before so that is something to look forward to.
Anyway, my vision seems to be getting better though the numbness isn't clearing up yet, but we were told to expect a 3 week or so wait for that. The worst side effects so far with this new stuff is neausea which we have just got new tablets for and also terrible swelling in my legs. It is so bad I can hardly move right now and have to keep my feet elevated often throughout the day. My legs swell terribly - even so one leg looks like two and I have no ankle and my feet look like a cave person's purple swollen stumps. Yuk. I do not, in the least, exaggerate. Anyway, that is the situation as of now and tonight is the big night. I got Robert tickets to the Wizards/Jazz game tonight. It is something we've always wanted to do but just never could afford, so in my insane credit card/Christmas spree, I decided to go ahead and make a few dreams come true. I hope I'm up to it and can really enjoy it without complaining. It cost a fortune, but I wanted to do it before I deteriorate anymore!
Seriously, I'm feeling much better than last week and have good hope for next week. The good thing about this new chemo is that I'll be 2 weeks on and one week off. That is a good thing, to have that break, but I don't know how it is going to work out with my mom having to take a week off every two weeks to watch the boys. Ah, well, it will all work out somehow.
Hope everyone reading this is in good health and enjoying their lives to the fullest. Don't let a day go by...don't miss a kiss or a hug..and don't pass by a smile! Sorry for all the typos!
Saturday, January 12, 2008
So, anyone knows of anything that is legit, please let me know.
A lot of people keep asking me when I'll be done with the Chemo and the answer is: Never. That is what is going to keep the cancer from eating up all my bones and organs, well, it won't stop it but it will slow it down. The stuff they have me on now is probably the strongest and certainly the newest stuff. I will stay on this until the tests show that the cancer is moving quickly again and then they will try me on some other type of chemo and that will be the game, switching chemo therapies trying to stay ahead of the cancer. My last tests did show the tumors in my liver are smaller - that is such miraculous news and not really expected. As I said, the hope is just to slow it down, stop it from getting much bigger very fast.
We have total faith in the Lord. Our struggle, as always, is trying to live the commandments, keeping the spirit with us all the time, and being the best people we can be. From time to time we get a big wake-up call that tells us we need to get back on track and that is where we are now. We know the Lord can't give us the blessings he intends for us unless we are doing what we are supposed to be doing too. We are grateful for all the prayers from all of you who love us. You have prayed life into me and kept my family going and we love you all so much.
Friday, January 11, 2008
Rosie loves reading letters! She can pick out about 1/2 of them. Her pronunciation isn't too perfect, but she has so much fun. She calls "r" roe-roe which is her name for herself and since r starts roe roe well that is a better name than "r". She is trying hard to pronounce her own name properly now too. It sounds kind of like ro-he, but still she usually says, roe-roe.
Today I put on a t-shirt with a lot of writing on it and she got so excited and started pointing out all the letters she knows. Her favorites are the vowels and she knows all of them. She has been making lots of two word sentences but yesterday she said, "More rice, momma". Three words! yea. I just can't wait to communicate better with her.
I have the cutest video of her "reading" but I can't get them to load. I'll try again tomorrow.
Here is a beautiful shot of Erin and Drew. She started to fade a few hours later and she and the baby took a short rest on the couch.
Scott and Stewart still hard at work.
This is the little inch worm Rosie got for Christmas. She loves cruising around on it.
Ethan and Sad playing one of games they got.