This brings us current to last week...

Kathy from Dr.B's office just called and told me they got me a tentative appointment for FEBRUARY 10 @ 1230pm with Dr Kessel!!!! WOOHOO.... Dr B was adamant that I see him and not Dr. Vu. Dr Vu specializes in pregnancy hormones NOT menopause hormones. They were able to used my bone scan as the basis for the referral. The 10 is Gary and My anniversary but I already had an appointment to take Gma to the Dr that day anyways, that I don't see happening, so what is another Drs office? So this is my next few week's new schedule....

Thursday - 1/26/06 - Dr. Tasaka - 11am Emergency Appointment for Lyssa (felt really stupid for this one...seems Evan must have knocked me one in my sleep, my jaw is bruised)

Thursday - 1/26/06 - Dr Hahn - 4pm (Shayla) 1 month recheck for broken arm

Friday - 1/27/06 - Dr Bhattacharrya - 1215pm (Lyssa)

Moved to Tuesday 1/31/06 --->Monday - 1/30/06 - POBII - 8am the AMAS blood draw at Queens (Lyssa)

Monday - 1/30/06 - Dr Jacobs - 315pm (Ethan)

Tuesday - 1/31/06 - Dr Hubbs - 9am (Lyssa)

Wednesday - 2/1/06 - Castle 8am - Upper GI w/Small Bowel Follow-Through

Friday - 2/03/06 - Dr Kim - 430pm (all 3 kids)

Friday - 2/10/06 - Dr Stahl - 9am (Gma)

Friday - 2/10/06 - Dr Kessel - 1230pm (Lyssa)

Moved to Thursday 3/09/06 845am (I THINK)---->Tuesday - 3/07/06 - 1045am(Gary & Lyssa)

Tuesday - 3/07/06 - Dr Kazama - 230pm (Lyssa)

I figure if I post it here then it is now locked in CYBER SPACE and can't disappear on me or GET CHANGED (knock on wood).

January 27, 2006... I have the first of about 20 appoitments this morning...Please pray that the the Drs can find some answers. I haven't been posting anywhere about this in awhile as I found out that I was discouraging to many mamas. I find I am in need of prayer today. A friend was supposed to go with me, she was to have been here almost 2 hours ago and I have not had a phone call or anything. Lilman will be with me, which is never a problem with this Dr, but as he is getting older he is understanding more and more and he is now scared when we turn into either the parking lot for the Drs office or the hospital itself. I am just dreading this appointment but it needs to be done. I have about 20 more in the next 2 months. Thank you in advance for your prayers.First thing they have moved into a new office HALF the size of their old office (can we say way tooo tiny). My auntie did show up (almost 3 hours late) but she was able to stay in the waiting room with Lilman. For future reference for anybody... yes they still do PAPs after a complete hysterectomy. They have me scheduled to go into the hospital next week for some more invasive testing. I also have the box for the special blood test that I have to do next week. This should be interesting, I have to be at one hospital before 8 am and back to the other one by 9 am and they are about an hour away with traffic. This will definitely be God's hand in this if I am able to make it. I also got insurance approval for a YEARS worth of visits to the Dr that I really need to see, this is a HUGE praise. I even saw it in writing today. Just that one little appointment wiped me out. DD was supposed to have had her recheck for her broken arm yesterday but I had an emergency appt yesterday morning... seems Lilman must have cracked me one in the jaw in our sleep. I thought I had a cavity or something, dentist ruled that out but xrays showing blood pooling in the socket or something so i have to keep it iced. I don't even remember him bumping into me, but who knows. The bone Dr appt is next week also, I hadn't posted this anywhere public, but I have multiple stress fractures that are the reasons behind most of my bone pain. My bones have aged 20 years in the 1 year since the hysterectomy, despite all the supplements and dietary changes or regulations that have been put in place. I need continued prayers that the bones stop breaking and we can reverse the damage done before something really serious happens. I was also cut back on eating soy again today. This is the pits as I love tofu and we eat it a great deal. Again thank you for the prayers, it really helped today. I still have to update DH when he gets home. He is doing something totally against the norm and getting the kids McDonald's but hopefully that will buy us some time to talk. The funny thing.. I was so stressed about this appointment, I even wore eye makeup and painted my nails. I had a dear friend that always told me when you feel horrid on the inside, make the outside look wonderful and it will spill over. Again I can't say thank you enough to those that prayed, I deeply appreciate it and draw strength from you wonderful ladies.

January 21, 2006...I do have some good news....Got an appointment with a NEW GI SPECIALIST.... the only catch, the appointment is MARCH 7 - and this is the one that I tried to get an appointment with last year, By the time that I see him, it will be 14 months since the beginning of these bad stomach problems. If I had been able to see him in the beginning, he would have automatically done the camera endoscopy and not subjected me to the EGD and Colonoscopy. I have an appointment with my GYN next week friday the 27th, then the bone specialist on the 31st, and now the GI specialist on 3/7. I am still waiting on the referral for the Endocrinologist.

January 19, 2006...My insurance company is giving my Drs a difficult time in trying to get me to see some of the specialists that they want me to. I have had the majority of my medical expenses taken care of by a private grant for the last 12 years. This grant was specific in the qualifications of it's terms. Anything having to deal with the primary cancer it covered. Now that I am dealing with secondary conditions I am now having to go the route of our regular insurance. Our health group admin says that there is only one Endocrinologist with out group and I need to go see him....that would be fine if I needed IVF AGAIN (he was our Dr with DS#1), he does not specialize in hormones in regards to MENOPAUSE, just INFERTILITY.... does anybody not see that these are TWO very different things?? Ok, so in the process of talking to one of my Drs nurses, I let her know that the other Dr had ordered the bone scan, she asked if I had been told the results. I told her yes, unofficially. As I am a shared patient she should be able to get the bone scan sent to her also. Dr. B read the scan yesterday.....I had already been told that I had ONE stress fracture in my right shin. Ok, I can deal with that, it doesn't hurt per say....I didn't ask about anything else as I have an appointment with the bone Dr on the 31st. Well, in the course of Dr B reading the scan to send a letter to the insurance company to get me covered to see the specialist, he, an OBGYN, not an Orthopaedic, sees TWO MORE stress fractures... one in my right side of my tail bone.... (this has been a huge source of pain for over a year now) and one in my spine near the bottom but again towards the right side. All of this on the right side makes sense now as to WHY my right THIGH hurts. It is having to do the work of all the other weakened bones around it.Ok, so this is where I get upset..... I fight for 12 years to have my babies, I do 23 surgeries in 12 years, I do numerous horrible chemo's and other alternative treatments, I finally give in and do the Hysterectomy. I develop a bacterial infection in my blood along the way, that takes almost 2 years to get rid of, develop Aplastic Anemia that we get under control, now have a non-functioning gallbladder that needs to be fixed.... ONLY to be told that my body is very quickly destroying itself...... The thing that gets me soooo upset..... THEY STILL HAVE NOT DONE THE PARA-THYROID test, or the RA panel to rule out RA and LUPUS. I understand that most of the medical system is about Money, but when I had a private grant paying for everything no questions asked, I guess I got spoiled. I now have to wait for AVAILABILITIES for appointments, phonecalls, results. I so took for granted everything that I had access to up until now. As long as the grant was paying for things, I seemed to have a voice in my treatments and testing and surgeries. Now that insurance has taken over, I have absolutely no say in ANYTHING., so I sit here in absolute pain, can't eat, can't sleep.... BUT GOD FORBID, I should complain, so they give me ANY PAIN PILLS that I want with refills. DOES NOBODY ELSE SEE THIS AS A HUGE PROBLEM??Sorry to rant, but I am just so tired. Emotionally, Physically and unfortunately even Spiritually right now. I have even stopped posting in my journal as when I go back and read it and the responses that I have, I am only bringing others down. I just needed to get this off my chest before I try to get some sleep. Lilman was up most of the night and then back up at 730 this morning, so we are going to go in the room and close the doors and sleep, at least I know I am going to, he can watch videos or play on the bed but I will know he is safe.

January 14, 2006...I got the some of the results back from the bone scan...Mama's I need lots of prayer please. There are several areas that they are extremely concerned about. My right shin just under my knee is showing something. I don't go back to the specialist until the 30th. The other thing that is very scary, in 9 months since I went off of the estrogen replacement that I was on, my bones have aged 20 TWENTY years. They believe that I have several stress fractures. I don't do strenuous things, so this is really scary to my Drs. They feel that the years of OVER producing so much estrogen and then now the lack there of, my bones are literally falling apart from daily usage. The Dr told me, I now have a medical condition that I can have whatever pain medication I desire, as this will only get worse till they figure out a way to stop it. I don't like to be on pain meds and with Evan still nursing it's not good for him either. I did however ask for a refill of my Vicodin, as it is the lesser evil of what they are offering. I had also run into some problems this week with my Dr.s ummm "nurse" for lack of a better word. He IS still trying to get the endoscopy (sp?) scheduled but is having a difficult time in finding the correct Dr to help him as it is at a different hospital than we normally do things at. Please pray ladies, I am scared like I haven't been in a long time.

January 10, 2006... I made it through the scan, it was hard that thing was less than a couple of inches away from my face. The whole scan took about an hour. I can't lay flat like that for very long. By the time it was done, both my arms were numb from the shoulders down and my right bad shoulder was screaming. The tech had to help me up and heard all my bones crack when I stood up. I wish I had had a camera for the look on her face. All she said was... THAT IS NOT SUPPOSED TO HAPPEN.She did talk to me during the scan. She pulled up my scan of my gallbladder from the other day and said I am looking at surgery in the near future. The normal ejection fraction of your gallbladder is 35-75% I am at 7%, that is not good, I guess I have been telling Drs for over a year something was wrong and it is NOT linked to diet. This lady asked me... or I guess more pointedly told me.... it hurts when you eat... no matter what you eat right? To have somebody that I have said anything to hit it on the head like that....WOW! I know she is not a Dr or anything, but she does work with this type of thing all the time. So, now I wait until they get the camera thing scheduled. I will have to go look up the name of that... it is some type of Endoscopy, I have to swallow a camera and it will take pictures of the inside of my small intestines. I was told that the EGD and the colonoscopy don't give them these pictures, so they need them.I had to yet again sign a paper saying I won't nurse for 3 days again. The chichi's JUST got fixed. Evan is crying he wants to nurse and I can't, it just breaks my heart. He is still up and it's is almost 2 and he hasn't yet taken a nap. I thank you all for your prayers, please keep them coming.

January 9, 2006...I have to be at the hospital at 815am for them to inject me full of radioactive junk again and then I can go home until 1115am, BUT CAN'T NURSE OR TOUCH Evan for those three hours. At 1115am I have to go back to the hospital for a full body bone scan. They are also trying to schedule a special test where I have to swallow a camera. They now think that I have either ulcerated or perforated (what the difference is beyond me) my small intestines. I am also looking at gallbladder surgery. Not that I have gallstones or anything like that, they did the test while I was in the hospital that tested the functioning level of my gallbladder. Normal is 30% I am at 7%, and they tell me that there is nothing that can be done to either reverse the damage or to make it work more efficiently. It either has to be something that I live with for the near future until it gets too unbearable or it's going to have to come out soon. They also said that this cannot be done Laporoscopically. I also heard back from my GYN today...the AMAS test is in and most likely I will have to the blood draw for that next Tuesday morning as it has to be done on a Monday or Tuesday at 8am at the big hospital, as it will have to be flown to the mainland for processing and reading. I also asked about the additional testing for my liver and what that all meant. They are not overly concerned with that for the moment. The pain meds they had given me in the hospital are not touching the pain at all, either in my stomach of bones. They can give me much stronger ones but that would mean weaning Evan, which neither of us are ready for. I told the Dr today, it is not my wish to live on pain killers. I want to find the root of the problem and fix that. The liver pain is lessening so the dandelion and blessed thistle along with the astragulas are working. Gary also bought me a new juicer so I am back to juicing everyday as I cannot seem to eat anything.I was so ready to walk in there today and tell the DR, I am done!, but yet again he makes me realize this is not about me at all. This is about my kids. I need to do this for them. I need to be there for them. Which means that I have to do whatever I can to ensure that. They have STILL not ordered the testing for the parathyroid. I have this nagging feeling that that is the real problem right now. And because they haven't tested for it, nothing will show up until they do test for it. I have also been fighting with my insurance company to get the referral I need to go see the specialist, the reproductive endocrinologist that SPECIALIZES in HRT and alternatives. They are telling me that ANY NORMAL GYN should just give me something and be done with it. As most of my medical stuff goes through my private grant they are no privy to all that has happened in the past few years. I had to sign the release today to allow them access to all my grant paperwork to see if I qualify under my insurance for the allowance of this Dr that is out of network. The thing that is so spooky, they are more than willing to put me on a drug or drugs that will make me sicker quicker without a thought, but won't allow me to look for an alternative to this medication.I need specific prayer please....I don't have anybody to watch Evan tomorrow. Please pray that 1. He will be allowed to be with me, while I do this procedure, but kept safe with the nurses. 2. Also that I don't have any anxiety attacks this time. 3. Also the main one, that they can find out what is going on! I so want to be posting praises instead of all these prayer requests. Gary is supposed to go to the mainland here soon and he won't go if there is anything going on with me. This could potentially hurt his job bad so I need to get better. I know HE is in control, just would like to be able to feel that aweinspiring presence more right now, I feel very alone. ETA... Spelling... sorry was trying to get this all typed out while Gary boched the kids, wet kids and good spelling do not go hand in hand.

December 28, 2005.... ended up in the hospital at 7am on Christmas morning and wasn't released until last night. Today I am still not able to do to much. Just logged on now and see I have missed 18 PAGES and have a lot of catching up to do.

I stopped posting in one of my journals right about here. I was told that I was discouraging people. That was never my intent. My journals were a place for me to pour out my heart and soul and get it out of my system so that I didn't take it out on my family.


December 20, 2005...Somebody else tell me how this went because I have absolutely no IDEA....I don't even know where to start................I get to the Dr and fill out the standard questionnaire and the nurse puts me in a room. The Dr comes in....what is my chief complaint? Pain in my thigh, shin and ankle bones, and my right arm hurts. Did I do anything to injure them....NO!He told me I was being too vague that he didn't know what was going on as he HAD NO MEDICAL history on me at all and Dr Stahl didn't send anything to him, but he did tell me that Dr Stahl called him direct to make this appointment. I had put on the paperwork all the surgeries that I could recall ( I know I missed some as I forgot my paper that I have it all typed out on). And then there was a line that asked DISEASES in the FAMILY, so I wrote down Mother-MS, he brought this up later, but back to me....I told him bottom line, I had to have an emergency hysterectomy in January and have felt junk ever since with things getting worse lately. He asked me what was wrong with my thyroid, I must have looked at him weird because he told me it's enlarged and pointed at my neck. I immediately start crying because I WAS TOLD EVERYTHING was normal on my blood work. So now I have to worry about this for my appointment with Dr Stahl on Friday. He then proceeds to tell me that whether he talks to me for 15 minutes or 5 hours he will make the same amount of money. I just happen to be catching him on his lunch break so he was listening to me I guess. He can't see any causes to the bone pain, but he wants to go back to where "I lost the keys" as he put it....the hysterectomy. He said by NOT being on the HRT I am setting myself up for a bad thing in the future. I am hurting my bones. He also wanted to know if certain tests had been done to check my parathyroid as my thyroid test when he asked me what the numbers were were within the normal ranges. He asked what my sed rates were, I told him that also. He PERSONALLY walked downstairs and got my x-rays from last year for my shoulder. He said yes, he can do something about that but I need to get these "other" things under control first. He wants me to get a second opinion from a GYN on other suitable sources of HRT OTHER than the patch that I was on. He wants me to see a DIFFERENT neurologist for migraine management because I will just have to learn to deal with the migraines that the HRT WILL cause. The biggest thing I need to get a hold of is NOT being able to sleep. He feels that the neurologist can handle that also. After looking at the paper that he had me fill out listing the surgeries and family history, he tells me that I will never be happy, like I am making myself feel like c--p to keep having surgeries and what not.....It was my understanding that they only operate to FIX things that are BROKE, not just for the fun of it. He told me that my shoulder should have been treated differently a year ago. Yes I should have still gotten the steroid shot, but that under NO circumstances should I have had the PT, why do you work a upset tendon. Normally PT would have only made this worse, but I showed positive results BECAUSE of the STEROID shot. I told him that I did what I did when I did it because of the amount of pain I was in. He looked at the x-ray today and said yes there is a BIG deposit of calcium that my body MAY have reabsorbed, but that I could still have pain, because all the calcium proves is that the tendon is NOT healthy. The only way to see what is going on with the tendon would be to look at it microscopically, but that might come later at next appointment in 6 weeks, or at least be discussed then. He did feel that I need a bone scan, and then he threw on the table that I might have a parathyroid problem. 99% of these cases are benign but he had me retell him my symptoms and of 17 symptoms I have 16. But of course this would be WAY to EASY if it was this. I called Dr Stahl back when I got home and asked if my parathyroid has been tested and to let them know Dr Hubbs had requested the bone scan and more blood work if it hadn't already been done, but he himself is not ordering any of this. He will write Dr Stahl a letter. I hope this letter is written when I go in for my 3 week follow-up appointment to my original appointment. Dr. Hubbs also feels that I am depressed but not in a clinical sense. Anybody would be depressed from feeling junk and then not sleeping on top of it, doesn't help anything. He didn't feel it was the type of depression that meds would help, which I told him already had BTDT and it only made things worse. He wanted to know why I had lumped all my aches and pains together? He wanted to know why I had come to HIM. He said just the fact that Dr Stahl was calling him meant I was a problem patient and that Dr Stahl was outside his normal referral zone. He told me his approach is probably VERY different than anything that I was ever used to, and he didn't know how to help me, but that he hoped he had done something to help me. I told him he had answered some questions I had had that nobody had addressed. He told me I need to become the type of patient that Drs want to deal with. He also told me EVERY Dr walks into a room with a patient and within 30 - 45 seconds decides whether or not they can help them. I think that is very unfair to say that, but I always thought that you could go to a Dr and TELL THEM WHAT WAS WRONG and at least try and get help with figuring out how to proceed. I guess because I am being PROACTIVE in my own care is really "hurting" me and I have now been labelled a "head" case. I don't take any of my family to the Dr at the drop of a hat. If they have something that needs to be addressed it is. I am not neglectful at all, but I do take care of things that I have learned to care for without going too the Dr at every turn. I guess by doing this I have gone against the grain and now I will pay for it.I am not asking for narcotics, which God knows I am entitled to, but no, I want to know what is wrong so that we can fix it. I am not asking for unnecessary surgery, but if something needs to be done I won't put it off either without a good reason. I really thought I was going to get some answers. All I got was more questions I guess. In total I was there TALKING to him for over an hour. But to be told that I will NEVER be happy, that was uncalled for. I went to the specialist for my wrist, when it was fixed I didn't go back. I went to the OBGYN for those issues, when it was resolved I stopped. I don't create problems that aren't there. I purposely put off going to the Dr for every little thing because I didn't want to be labelled a problem patient and here I find myself still labelled one.This whole hour of talking was just on the little questionnaire that I had filled out and what I could tell him. Other than the parathyroid thing, nothing was new. No answers, more dead ends. He asked me WHY I wrote down that my mom had MS, ummm.... it asked for family history. He is telling me I am worried about it personally. I have been dealing with MS for 25 years. I have done all the research, the likelihood of my brother or myself getting it, is less than 1% and the fact that our mother has it make its even MORE unlikely as it is not hereditary and it is really really too close to us. I also don't have any of the triggers that my mom does for there to even be a correlation. I did tell him, it does sit there in the back of my mind, but I know it's not a rational concern.I come home to try and collect myself and Gary lays a bombshell on me. The president of the company wants him to travel for 4 days in January (16-20). He used me as an excuse to get out it. The kids told me that they went to the jewelry store while I was at the Dr, I guess he thinks to bribe me or something. I am so tired of him using me as an excuse but then not telling anybody he works with what is going on. Here his bosses think I am just a totally inept mom and can't do ANYTHING without him. I could manage 4 days with him gone. I won't lie, it won't be easy or fun, but I can do it. If he wants to hurt his career there are other ways of doing that and he better be thinking of them, I DO NOT WANT TO BE THE CAUSE OF IT.Now I wait until Friday, to see what has been written up in this letter and what will be sent to Dr. Stahl and what he is going to do about it. I don't what else that I can do to make myself feel better from a nutritional or supplement standpoint. That is why I finally went to the Dr, was this is now something beyond my scope of knowing what to do.So, as to how the appointment went, somebody outside of my body..... tell ME how it went because I really don't know.

A few friends had asked some questions and here are the answers....Thank you both very much. Gary didn't have any insight as I was crying hystericalle by the time I got home. Yes IF it is the para-thyroid there are four of them, there are blood tests and then ultrasound to see which or how many are affected. The treatment is a minor surgery to remove that para-thyroid/s. You have four and they can remove up to 3.5 and your body still work, but when ONE is not working it messes up your whole body. \Here I have been told I have terminal cancer and have dealt with that and we are REASONABLY sure we have gotten that under control, and then to be dealing with the Aplastic Anemia as a secondary condition, which again we seem to have gotten under control....but only to feel even more junk then when I have been at my sickest.I WANT TO FEEL GOOD AGAIN. That is the bottom line. I am 31 years old and want to feel my age not 80. When I get up in the morning it takes over a 1/2 hour most days before I can move without LOUD noises from my bones. That is not normal. We didn't even scratch the surface yesterday about anything really involved as he didn't have any of my records. I have a feeling he will be acting TOTALLY different for my appointment in 6 weeks. I was referred by Dr Stahl and I was supposed to have a follow up appt with Dr Stahl this coming Friday the 23rd. THAT has now been cancelled. Their office has not gotten the letter from Dr Hubbs office so they FLAT OUT CANCELLED my appointment. I am so upset I want to yank my whole family out of that practice and just stop seeing Drs completely. The nurse told me today that NO my parathyroid HAD NOT been tested and they had NO intention of testing it. She then proceeded to tell me that something has to be off on regular blood labs before they will test that. Well, as I can't order blood work myself, and the Dr himself is NOT returning my calls, I am at a dead end again. Gary will go do his mixed up blood work again and make his appointment. When he gets there Dr Stahl with either not say anything or he will ask what is going on. Bottom line, he has very unexperienced nursing staff right now, when his nurse and office manager of 15 years WALKED out several months ago. I have done all the research, if this is the parathyroid thing, I will end up really sick fairly soon, and they will either have to fix me, or it will be too late and they will be talking to our lawyers.

December 19, 2005...Today was the first day that the kids were home on winter intersession. We WALKED to the shopping center to meet Gary for lunch and then he drove us all home. I have been able to get quite a bit of work done. Evan actually took a nap also. Shayla drew while I worked on getting reports out and Ethan played on his computer. I now see that Gary has logged out and should be on his way home if not close to home already.I got the results of the blood work back that Dr S did a couple of weeks ago. It all contradicts itself, and he is really concerned, more than he let on to me. Gary went in for his 6 month check up for his Cholesterol the other day and all they talked about was me. I tried to call all the drs that he wanted me to see with none wanting to even make an appointment. He called and talked to one of the Drs personally and I have an appointment tomorrow with the Ortho at 11am. I really would like some answers. They are now going to be looking for Rheumatoid Arthritis and Lupus amongst some other things. I am getting really tired of making all these journals for all the different Dr's. They each want something different so I have decided I will make one that just includes EVERYTHING. It is really scary to look back and see the fluctuations in the BP and the Daily fevers. But by doing these journals they can't say that it isn't really happening. Please pray that tomorrow we get some answers. Gary is going to try and go with me to this appointment. He is starting to get really scared and I have never pressured him to go to appointments or treatments with me. When he is seeing all these people around us getting and fighting cancer, he can no longer ignore it. The newest one is the kids principle's DH, he is 43 and he just had surgery last Monday for colon cancer. Mrs. T was supposed to call after they got the path report on Friday and NOBODY has heard from her so we think it might be really bad news. Her DH is the same age as Gary and our friend that passed away two weeks ago was a year and a half younger than Gary so this really is hitting home to him.

December 5, 2005...Sorry to be so quiet, too much going on right now. My dear friend's husband passed away yesterday after a long 3.5 year battle with Lymphoma. He was 41 years old, he leaves behind a wife and 3 boys, Alika is 14, Nainoa is 12 and Kala'i is 4. I saw Nani this morning and she is holding up as well as can be expected for now. The funeral will be this week, so I will be pretty scarce again until everything is done. The worst of it all is, their middle boy, Nainoa is in the mainland on a football thing and doesn't even know yet that Dad has passed away. I have been trying to call all morning for Nani, to get ahold of some friends that went in their place, but I haven't been able to get through to anybody. Also just came from Gma, and she is not doing well at all. She is losing massive amounts of weight but is HUNGRY all the time. She eats 5-6 FULL meals a day. She is losing her hair by handfuls and she is not even doing any type of treatment. T and I have decided along with the Dr there is really no point in trying to figure out WHERE the cancer is. There is nothing that could be done about it anyways, so we will just keep her comfortable. Dr. thinks a few weeks to a couple months at most. The totally crappy thing about all this, is we still don't have any answers as to what is going on with me either. I went Friday to our regular family dr, on the lab requesition form, ALMOST everything was marked that could be. There was a funny spot in all this... the Dr. told me I was depressed.... YOU THINK??? Let's see I am 31, have 3 small children, a sick Gma and oh yeah..... TERMINAL CANCER....wouldn't you be depressed? We went the hospital on Saturday morning and they drew 7 very thick sluggish tubes of blood. My RESTING heart rate is on average for the past three days is 110, NOT GOOD. My blood pressure is a little better but still high for my normal. Most recent one 138/91 heart rate 107. I now have new things hurting that aren't supposed to be. The kids went and saw Santa yesterday and I asked Sant if he could bring me a new body. Of course he thought I was joking, but then when my little baby boy, tells Santa he wants a new Mommie, he didn't know what to say to that.
My bright spot is all this....




November 28, 2005... I guess it pays to know people in high places...My older brother is an internist in Osteopathy at UC Davies in CA. I guess it really pays to complain a little to him. Well not really complain, but to tell him what is going on physically when nobody else seems to be listening.I really want to feel better.Constant low-grade fevers, and some not so low DAILYItchy SkinBone Pain in Legs and ArmsDistended Stomach, but not bloated due to gas or constipation (opposit problem) (looks like I am about to give birth)Blood Pressure all over the placeNo amount of dietary changes or exercise.... weight stuck in one place (better than climbing but not moving down either)InsomniaNo motivationNumbness and tingling in limbs without compressionNight Sweats (all throughout day also even in cold situations) (75* now in house and all my clothes and hair are soaked)but the biggest.... not enough showing up on "normal" blood tests.My brother made some phone calls and "special" tests are being flown in and I need to go to the "BIG" hospital for a special blood draw. My grant and insurance won't cover these BUT THEY NEED to be done. I will gladly take my checkbook with me and pay whatever I have to go get some answers. All the Drs involved are afraid of what these test will tell them. I am prepared no matter what they say, because it will be answers one way or the other. I was so sick this morning, Evan sat on the bed and held my hand for 3 hours while I couldn't move at all. When I was feeling better I asked him.... Why did you hold Mommie's hand?.... his answer..... So Mommie know I safe. It was just he and I home, we were closed in the bedroom and he was watching disney, but for him to want to just stay by me and make me feel better, ! I got an email from my SIL today where she mentions that the babies are really fussy today and she is wiped out. She hoped she didn't have any more days like that. I assured her she would, but then one day the babies will do something that just touches the most precious part of her and it will make all the hard times just melt away.Talked to T, Gma had a good thanksgiving. T has a big family and they all came over to her house for dinner. Gma ate dinner and ACTUALLY talked and was nice to everybody. I prayed hard all day that that would be the case so it was very rewarding to hear it went well. We had a quiet Thanksgiving which was good, but I was so ready for the kids to go back to school yesterday.We went to the Thanksgiving Eve service on Wednesday night at church. I can only say one word.... AWESOME. I hope it was as meaningful to Gary as it was to me. My bestfriend in the mainland is again making comments about Gary and his "No salvation" this is not something I can force on him. I continue to pray and wait on God, only He knows when it is the right time.Not a big update but just a little, I am still here and hanging on, taking it one day at a time!

November 7, 2005....Took Gma to see Dr. S today. She has lost 20 pounds since july 17.... 148.4 today 128.4. Her BP was great 111/70 but she has rales on both sides and CHF is getting bad. He increased the Coreg to 6.25 PM and keeping AM at 3.125. He is very upset at the back sliding for when she was in WGH and they stopped the meds. It took us a year to get to 50mg daily total...we are not at 6 1/4mg, she is failing fast. She is also bleeding rectally a great deal. We all fear colon cancer but we will not do anyting invasive to know for sure. All paperwork talks of comfort measures so we will start that when needed. She was in a really weird mindset today. She didn't know that Gpa was gone, she didn't know she was here in HI. She didn't know that I have been caring for her for almost 3 years. She asked me how my flight was ??? She was very agitated by not having access to a phone....who is she going to call? She was very upset that Daddy hasn't been to see her. I cannot control a grown man so I had no answers for her there. I will not be telling any of the other family any longer anything that is going on. There is nothing that they will or can do so what is the point. The nurse called her my mom today and I did not correct her. She is more my mother than my father's anyway. T told me last week they sat outside until 2am, Gma was convinced Gpa was coming to get her. When he didn't come she melted. I don't know if she thought physically he was coming or spiritually.She did ask why I looked they way I did today and I just told her that I have been sick. She doesn't need to know anymore than that. I really tried to look my best for her today but even on a bad day she knew I didn't look good.Gary is home for the week on vacation! The first vacation he has taken in almost 10 years...Yes he took the day each keiki was born but was back to work the next day. We are trying to get some things done around the house. Evan's birthday is next Monday and he will be 3, we are having a party for him on Sunday...so I have been told. My BIL, his wife, their 3 kids and my IL's will be flying up here to do some shopping on Saturday so they will conviently come by here on Sunday. They even told me what they want to eat. I AM NOT COOKING. So then they told me what they want me to cater for them. I know money is not always tight around us, but THIS IS NOT IN MY BUDGET and I stick to my budget to make things go so smoothly. I will get a cake for the kids but if they want to eat anything ... THEY can pick it up on the way here.Gary and I folded 2 months worth of clean clothes and put it away this past weekend. Gary caulked the toilet in the hall bathroom and them cleaned both bathrooms. He swept and mopped while I was at church yesterday. I was sad to go to church by myself but did not want the fight to get everybody up.It was a great message and I learned a great deal. I checked the website but the notes aren't up yet.... http://www.hopechapel.com/teachings/index.htmlI have hives from all the stress of today, so I am off to bed and hopefully will wake "normal" tomorrow.If anybody knows what seasonings are used in BiBim Kooksoo... PLEASE let me know. I have been craving this so bad, and the restaurant where we used to get it from closed two weeks ago and she would not tell me what the seasonings were but she told me everything else. THAT does me no good if I can't duplicate the taste, lol. I need to go find HannahJo and ask her.