January 20, 2010
I’m sorry I haven’t updated in so long and left you all worrying. I have to say though, we’ve been a little worried ourselves. I have managed to stay out of the hospital but only by a hair. My fever spiked to 101 last night and that is our usual cut off but we used some ice extra ice packs and got it down to a low grade. My cultures came back negative so I shouldn’t been getting any fevers but who knows. Last week went well with the blood products but this week we are back to chasing down results and doctors. It’s never ending vicious cycle. I did a couple treatments at the home-path dr.., one being a vitamin drip that seemed to boost my energy a bit and the second was a hydrogen peroxide treatment that is designed to deliver oxygen to your cells. And we all know by now, that cancer cells don’t like oxygen as they are anerobic in nature. Unfortunately the positive response from the treatments are short lived. I had some energy for a couple of hours but then I’d nose dive again. The cost of the treatments are pretty high for short lived results so we are still searching our options. The past week or so has been the worst. I literally sleep about 18 hours a day. I may get up 3 or 4 times a day for an hour or two but that is it. Of course this has caused more muscle loss and even walking with the walker is getting scary as I have 0 balance. Poor Michael is bound to the house and watching me. That is no life. He is coping though and actually did some research for me today so we can weigh our options and decide what direction we want to go. I had lost so much of my drive that it was hard to even think about posting because I felt like I was letting people down by not being as strong as I need to be. I just need to pick myself up, kick myself in the butt and start fighting to get these muscles back and immune system working. We had other battles to deal with as well but the details would most likely be to gory for the standard reader. I know my husband never thought he would have to go there and I know he hopes he never has to go back. And yes it was extremely painful for me. I don’t usually make noises when I’m in pain but this time I did. Actually a couple of times throughout the month, I’ve had to let it out and just cry or moan. I’m so looking forward to these sores healing and the bone pain to subside. However, on the upside, my mouth is doing a lot better and my sinuses are holding steady. They aren’t cleared completely but I am able to breath thru my nose for the most part.
On top of all of this, Brandon went and got himself in trouble out in Boulder City and that cost us a lot time and money. I don’t know when that boy is going to learn he is not welcome in that town. Ian leaves for L.A. on Friday for America’s got talent tryouts and gathering all those documents was also a time consuming task. And with only one vehicle in the family, things just got more complicated. But hopefully, that has been remedied and Brandon can start driving his truck again.
That’s about it. Just getting by day by day and trying to get my determination and drive back. I’m near rock bottom and just trying to hold on to the rung of the ladder and not slip any lower as the climb already seems insurmountable. So with that, please keep praying. I appreciate each and every one of you that are checking on me, praying for me, leaving me comments and encouragement. Love to all of you.
January 6th, 2010
Ian woke up yesterday with pink eye. Poor guy, I know how that can hurt. I immediately sent him off to his dad’s because I know just how contagious this can be. He went to the Dr. and says it’s healing up but they want him out of school until Friday. I’m sure he doesn’t mind. He’ll survive but I’m not sure his grades will. Monday and Tuesday, my fiend Rachel came over to be my caretaker. It was very nice of her and she said she had a good time as she usually doesn’t slow down long enough to enjoy the silence in the day. She starts her new job in hospice care on Monday and judging by how she was with me for those two days, she is going to do a fantastic job. I continue to go up and down. I’m back to just taking it hour by hour as things are changing constantly. I worked on getting standing orders on my platelets and blood so maybe we can make these transfusions less of a major drama and more like a simple medical procedure. I contacted the P.A. and had her do some poking & proding with my oncologist to figure out why he was restricting my blood products. Not sure we made all the progress we wanted but did move forward. So, thank you Lord. We see the homeopathic dr. tomorrow. …………….It’s now January 7tth , I kept falling asleep while typing last night so my husband put me to bed. I got a pretty good nights sleep and I’m up and at it this morning trying to be as normal as possible. Still working on Christmas cards and hopefully will have them done before Valentines day. I must go get dressed for my appointment now. I’ll try to write more later.
January 3, 2010
Breakthrough! I woke up this morning wondering just how I was going to make it thru the day. I was in extreme pain and due to the bone pain, misc. sores and of course the nose situation which was completely swollen shut with no air being allowed to flow thru it. My gums were bleeding due to the dry mouth as my lips were sticking to them. It was miserable. I slept in, got up long enough to eat a small breakfast, and went back to bed. I just wanted to sleep the day away so I didn’t have to deal with the pain. I had done quite a bit of exercising yesterday and I was really feeling it this morning. So part of it was a bitter-sweet pain. I had decided to play tennis and bowling on the wii last night just sitting on the couch and using only my forearm/wrist. Ohhhhhh……..it felt like my wrist was broken this morning. So I took a nap, then nature called. So while I was in there I figured I’d take the pain, grin and bear it and blow as hard as I could to clear that nostril. It hadn’t worked in the past but I was desperate. Low and behold… something started to come out. So I grabbed a hold and slowly started to pull. I blew, tugged, blew, tugged and pretty soon it was pretty clear why I couldn’t breath. It was so thick. Pretty soon, it was all cleared out and I had air flow once again in my right nostril. This was amazing! Then I used the neti pot, nasal spray, and nose lotions to make sure it stayed clear. So far, so good. I spent the rest of the day in the chair watching football and resting. I’m not sure which is best. Exercise one day, rest a day, or exercise a little each day. Anyone have any advice in muscle building? I am soooooooo sore but I’m scared to stop exercising as I know building muscle is extremely important. My appetite wasn’t as good today as in the past couple of days but I forced what I could down. I’m running low on pain pills so I’m going to have to add that to my list of things to do early this week. May require a dr. visit. Michael has 2 more days of work left so my friend Rachel is going to come sit with me. She’ll make me exercise if Michael tells her to. Of course we will most likely be getting blood and platelets somewhere between Tues. and Thurs. So now it’s evening time, the pain is back and I must go see what I can do. Thanks for all your thoughts and prayers. Love ya all.
December 24, 2009 – January 1, 2010
Merry Christmas Eve to everyone. Hard to believe the year is coming to an end. Just seems like yesterday that we were celebrating the new millennium and now we’re a decade into it. The older we get the faster the time flies I think.So my parents were able to sneak out of town a night early and beat the blizzard to Denver. They hit some nasty weather around Limon but for the most part missed the worst of it. My Aunt was able to find them a hotel room at a very reasonable rate and they even lucked out more cause the hotel waived their parking fee and they didn’t have to leave their car in airport parking. They headed to the airport on a shuttle hoping to catch an earlier flight and the good Lord was with them once more as they were able to get on the 9 am flight. A full 12 hours early. ………………………
Fast forward to New Year’s Day. As you can see, my intentions were once again in the right spot but then the energy level died off and then completely disappeared. In other words, I had a very tough week. I got a call on Christmas Eve letting me know that I needed to go to the ER for platelets and blood. I didn’t want to spend Christmas in the hospital and we needed to try to get on a new schedule where I would need transfusions at the beginning of the week and not at the end. So even though I knew it would be a rough couple of days and I’d be pretty fatigued, I decided to hunker down and make it thru to Monday where I could go to the regular infusion center. Mission accomplished. I was able to get my blood drawn on Monday and processed STAT. Then we should have been able to just call the infusion center and make an appointment but nothing can be that easy lately. Brenda and I spent the morning calling around trying to find out where the standing orders were for my transfusion. The blood draws had been ordered by our infectious disease dr. but we were having a hard time getting an order faxed over for transfusion. So the infusion center called the oncologists and everything went south from there. I swear this man is trying to kill me. He said he’d send over orders buy he changed the parameters. No platelets unless I’m below 10. It was 20. No blood unless it’s below 8. It was 8.5. He wouldn’t budge either. So I decided to pick my battles and I’d deal with it later as I was well below those parameters now. So they infuse me with 2 units of blood and a unit of platelets. The blood bank informed them that they had another unit of platelets available and since I was at 3 and they had time to infuse, would they like them to send it over. They called my oncologist twice and he denied it twice. I would not sign off on two units. They reminded him that they were closed Thursday-Monday and it would help carry me. He still said no and we didn’t have time to track down another doctor to over-ride it. I also found out he canceled my home physical therapy. So now I’ll be searching for a new oncologist which seems pretty silly considering I’ve been with him for 2 ½ years and that’s a lot of medical records. Now, on to Wednesday, I had an appointment with the homeopathic doctor we choose here. After spending some time with him discussing different options, we ended up doing an I.V. of a major vitamin mix. It took a couple of hours to drip but packed a much needed punch. It really perked me up so they sent a bag of it home with us for today. He felt Michael had enough experience with I.V.’s to administer it. He also sent us home with some more of that cream that seems to be magic. I put it on my sores and they look better the very next day. We go back to see him next week. I think we’re going to start a plan to rebuild the immune system and flush out the toxins. Palladium Lipoic Complex or Poly-MVA. He first wants to tackle my malnourishment. He is very worried about my lack of muscles, my sores, and my weight which was 97 pounds at check-in. He gave me some amino acids to help build it back up and wants me juicing 3 times a day. So my New’s Years Eve drink was the juice of several green vegetables. Oh……yummy. This morning my hubby made me some fresh apple/orange juice and it was TRULY yummy. Going to have to ease into that pure vegetables part of juicing. Adding a fruit here and there won’t hurt. At this point, every calorie counts. I just have to watch out for the sugar. Some of my meds screwed up my adrenals and we are still having to check my blood sugar levels and administer insulin regularly. I truly hope this is temporary. If I end up with diabetes after all of this, that would really suck. I’d still be thankful to be alive but really….don’t we have enough scares from this journey? And that brings us to Today! New Year’s. 2010. I’m feeling pretty good today. Still in a lot of pain but otherwise well. My sinuses are still swollen but my gums don’t seem to be near as sore. So I’ll be thankful for the relief, large or small. Concentrate on the positive! I did get a call today about my blood work. My platelets and hemoglobin were good but the pharmacist was alarmed this the potassium level. It was severely low. I told him I have a prescription potassium pill and he advised me to take them but encouraged me to call and get dosage from the doctor because if the potassium goes too low, it can cause heart palpitations. When I informed him that I was already having them, he suggested we go to the ER if they continue. I took the potassium and did the bag of vitamins. The palpitations are none to minimal so I think we’re in the clear and we can see what tomorrow brings paying close attention to the little details and signs your body gives you. Well, I better close for now and get this posted before I fall asleep. Thank you for all your prayers, love, and support.