December 21, 2009
I have been stuck in hospital hell. On my last update I mentioned that we were waiting on lab results. Well we got them. At midnight! Needless to say, I didn’t rush on it then as I knew it would be a waiting game that could be pushed off until morning. Unfortunately, no infusion center could take me until Monday so the avoidance of the ER didn’t work out as planned. So Kylie and Brenda came over and we packed for what should have been an overnight trip to the hospital. That was Friday morning. Here it is Monday evening and they are still working on discharge papers. But at least I know it will be this evening. The kicker of the whole thing is that no-one seemed to want to take charge. My infectious disease doctor was fine with letting me go the next day and so was the attending general but everyone thought it should be the oncologists call. No oncologist showed up for 3 days and when paged, they gave the run around and pointed fingers at other doctors. I just don’t get it. Anyway, as luck would have it, they found some infections beginning in my bladder and switched up my i.v. meds. Unfortunately, for no apparent reason I started breaking out in little sores all up and down my arms and legs. None of the docs can seem to explain them but let me assure you, they are called sores for a reason. Ouch! Then to top things off, they started taking my blood sugar again and the readings were in the 3 to 400 range. Huh? So they started giving me insulin. They said the high sugar was because I was on high doses of steroids but no one could tell me why, just that I couldn’t stop it cold turkey. So after a couple of days of that, I finally got a schedule I could use and an explanation for the medication.
So I have to say, this past month has really tested me. I am definitely having a difficult time trying to stay positive. I am by no means giving up or wavering on my belief that I can beat this but it’s not as easy as it was 6 months ago. My body is not the only thing that is tired right now. My mind and my soul are taking it one hour at a time. I know from experience that tomorrow could bring about a whole new attitude and I may wake up feeling amazing. That’s what I shoot for when I lay my head down at night. Tomorrow is always a new day and God is always there to carry you.
My little sister, bless her heart, gave my parents plane tickets to come se me for Christmas. I’m very excited about their trip. It’s only for three days but it is better than nothing. It will also allow them to see Ian’s play on the 24th. I’m still hoping I get to go but it’s going to be a last minute call. Not sure I can risk being around that many people even with a mask. But the video from the last program wasn’t of very high quality so I’m afraid if it’s the same company, I may miss out on a lot with him having a leading roll and all.
I am happy to say, I got my Christmas letter done. Un-happy to say, it will be after the new year before you receive it. I was printing them up Friday night when we ran out of black ink.
Thanks for your support, prayers, and encouragement. May your Christmas be everything Christ meant it to be. Hug your loved ones and say Thank You for all the blessings you have received today.
December 17, 2009
First off I’d like to apologize for not keeping up on a daily basis. It’s been a pretty up and down time. I’ve started several updates and then fallen asleep in the middle of typing them. They were short and humorless so I didn’t post them, but I’m sure a little update is better than no update at all. I would also like to apologize for the opening page of the website. I can’t get it to change and I can’t find the customer support number to get help. I will continue to try as obviously I’m not in Houston anymore and much as happened since I was.
Onto the past week or so. Let me tell you it has been an interesting one. Getting blood products in this town can make you feel like a vampire in the night trying to get some forbidden food. So basically, what happened is 3 lab screw ups and 2 hospital stays because of it. They were only overnight stays but still very annoying. In the meantime, I caught the cold that was going around and have been trying to deal with the stuffed up nose. The nose alone wouldn’t be too bad but it forces me to breath through my mouth which in turn dries out the ulcers on my gums making for one miserable little mouth. But this to shall pass and they put me back on I.V. antibiotics to help it along. The meds have to be given every 8 hours though and Michael got called to work for the next 3 weeks so I’m having to have a friend come over and administer the dosage. While she’s here, we try to do a little holiday baking. Well she does most of the work, I just point out where things are. The physical therapist came by twice. He said without a doubt, I was his youngest and weakest patient but not to worry, he would get me back in shape. He said the progress from day 1 to day 2 was amazing. But now I’m on day three and my muscles are feeling it. Ouch. There were a couple of times, I thought I was going to be stuck on the toilet because I couldn’t get enough quad strength mustered up. All in due time. So basically, I’d have a really good day where I actually took care of a few things and then I’d have a not so good day where I’d pretty much be stuck in bed or in a chair just fading in and out of sleep. The good news is there have been no fevers or near death experiences. No serious hospital stays and I’m getting some good time with my family and friends. We are nowhere near ready for Christmas but I suppose it’s going to come and go whether we are or not so we’ll just do the best we can. On-line shopping just isn’t the same but I don’t dare leave the house right now with all that is out there. Not to mention that everytime I get on the computer my eyelids seem to turn into 50 pound weights. I really can’t even think of anything the boys need this year. I know they would love to do some snowboarding but the season passes at Mt. Charleston have risen quite a bit and it’s such a hit and miss with the snow each year. Brianhead is a bit larger and more reasonably priced but 3 hours away making it harder to just go up for a couple of hours and still have a day left. Driving 3 hours after a hard day on the slopes can seem more like a 6 hour drive. Hopefully their feet will stop growing soon so we don’t have to keep updating their boots. That can get expensive. I’m anxious for the day when I can ski again. It so much fun but definitely takes more muscle than I have right now. But all in due time.
They took my blood this morning but no results yet. We used to think no news is good news but after all the lab screw ups, that’s not the case anymore. Hopefully we’ll be getting a call soon to say I’m ok and won’t be needing any products today. That would be great. This morning was a tough one and I was sure things were off but this afternoon has picked up and I feel a bit more alive. Tomorrow will be even better I’m sure.
One last note……Happy Birthday to my sister Amy on the 19th . Also Happy Birthday to my dear friend who created this website for me, Elisha Scrogum.
For all of you that will be traveling this holiday season, please drive safe, fly safe, and enjoy all the memories you’re making.
December 8, 2009
Ok, back on track this morning with my granola, banana, almond milk, and hot tea. It’s actually really good and makes me feel better than any of that sugary stuff. Just have to keep reminding myself of that when the cravings come along.
It seems to be cold all over the US this week. We may even get snow here in Vegas. Maybe not as much as Houston got the other day but a dusting or so would be nice. The news footage of Houston was crazy. Beautiful but crazy. That probally doesn’t happen but once a decade or so. Last night, my husband built me a fire to sleep by. It was awesome, right at the head of my bed. It helps also because of the drying factor. The central heat can play havic on your nose and sinuses but the fire seems to eleviate a lot of that. He kept it going until around 1 am I think. I read some scriptures until 11 or so and then couldn’t hang any longer and drifted off to a peaceful sleep. I had full intentions of getting up and watching the sun-rise with a cup of hot tea but I must say today the covers, quilt, and sweet dreams won out and I didn’t get up until after 7. The boys getting ready for school didn’t even disturb me. Brandon feels he is coming down with a pretty bad cold so we’re tying to avoid each other as is. Not sure what to do with that. Send him to a friends for a couple of days? Quarantine him to his room? Follow him around with Lysol spray? Or all of the above? I hate being paranoid but I think it’s the only way I’m going to be able to keep infections at bay. I do have open wounds that are healing quite nicely though so there must be some immune system building. One day a time, just one day at a time, I keep telling myself. Today is a busy one as well. We have the attorney stopping by, physical therapy stopping by, I want to get a Christmas letter typed, would like to cut some quilt pieces, and a whole lot of reading is backing up. And I still need to get dressed. Please don’t be discouraged if I don’t get back to you when you send me e-mails or comments. I read everyone of them, I just don’t get the time to follow up much. I will try hard to make this a New Year’s resolution I can keep. Well best get posted and on with the day as it is already 9 am and I am still in my p,j.’s. Thanks again for all your prayers, love, and support.
December 7, 2009
Can you believe Christmas is right around the corner? Where does the time go? You would think my days just drag by but they don’t. I try not to nap so that I sleep thru the night and usually that works well but then the question is…what have you got accomplished today? You’ve been moving and the T.V. has been off but it appears nothing has been done. Some laundry perhaps? Anyway, the boys get home fairly early and catching up on their days does take some time. Time that I enjoy very much. Just listening to their daily events and thoughts, hopes, dreams, and girls of course. High school drama…..some things never change. So I had a chance this morning to deaccess my port and take a bath before the nurse came by to put in a new needle. It was heavenly. After my bath, I weighed in to see just how much muscle had been lost. Yikes……I weighed 113.5 pounds with 15% body fat. Time to get out the hand weights. That is just way too skinny with no muscle tone. It did prompt me however to get dressed in regular clothes instead of my p.j.’s. I think I need to do this more often. Acting normal will make more progress and do more for your attitude than acting sick laying around in your pajamas. Yesterday, I was in a bad funk and I let my pain get ahead of me. Today, I’m trying a new approach and hoping I can keep the pain under control and the attitude in check. I’ve cheated a few times on my diet and don’t feel real good about that so I plan on getting right back on the wagon and working harder at putting the right things in my mouth. It’s just a really hard time of year. I wasn’t craving any sugar or refined, processessed foods until the past couple of days and now it seems to be a battle. Food should be an easy thing to control but for me it’s not. My will power sucks sometimes. Ok, more than sometimes. I had been craving a red vine and Micheal brought some home for the boys today. I had one bite and it made me really not feel well at all. Stamach mahim. So I guess, not all is lost. Just saty away from the sugar! Anyway, here it is 4:40 and I started this around 8:00 so I best get it published before it ends up being tomorrow aleady. See what I mean about time flying? Please keep praying for my guidance, healing, continued strength and pain relief. Also please pray along with me for all my other cancer friends I’ve met along this journey. You are all so incredible. Good night!
December 6, 2009
Boy have I lost track of days. Not really sure what all has been happening but the hours are just flying by. I’m trying not to nap during the day so that I sleep thru the night. So far, so good. I’m feeling well other than severe pain in the legs and feet. The feet are still swollen and continue to baffle me but I’m bound and determined to bear thru it. I believe I got home from the hospital on Tuesday Dec. 1st. Wednesday, we just relaxed around the house and took care of some business. Home health care came by to draw blood on Thursday and all seemed well. Then we got a call that they needed to come by again because the blood was coagulating and the Dr. wanted another test stat. How do you go from no platelets to coagulation in a day? I smell lab error. Well for me it was no news is good news, don’t stress about something you can’t do anything about and just move on with the day. So that is what we did. Then the call came in around 9:30 pm. My blood platelets were actually at 6.0 and I was told to proceed to the ER. Oh………not this again. Better safe than sorry though and waiting till morning wasn’t really a good option. So off to the hospital we go thinking we will just fill up in the ER and be on our way and home by morning. Ha! Blood products are just not an easy thing in the State of Nevada. We arrived, waited for a confirmation blood test, waited for platelets and then was admitted to the hospital. Yes, admitted! Craziness I tell you. Why can’t we just get these in the ER and move on? Well that’s not hospital policy. Furthermore, when we asked for our Dr. we were told we had to take the Dr. they assigned us whom knew nothing about us. We were told we would have to wait for him to come by on his rounds, check me out, go over medical list, then discharge. I was irate. I was just released from this very hospital less than 48 hours ago and they can’t even find my medication list and furthermore they want a new Dr. to go over it with me and likely change it. I don’t think so. Unfortunately, the innocent nurses got the brunt of my anger and frustration. Yes, don’t worry, I did apologize to all of them before leaving. I’m not that cold hearted. Long story short, enough complaining and your wish will be granted. I was able to get my Dr. in there and got released around noon. Just a short 15 hour delay. But hopefully we have some stuff figured out for next time that will make it a little easier. I owe my Dr. so much for hanging in there with me when other Dr.s just want to run and hide and wait for it to go away. Well, I’m not going anywhere. I’m still here fighting. Our attorney met us at the house shortly after release and we finalized a lot of stuff on our trust and life insurance beneficiaries. It made for a long afternoon but what a load off my shoulders. My sister left for Australia on Saturday and made it safely home last night. What a long flight. I’ve only done it once and I’m not sure I could do it again. The jet lag is pretty hard. But she’s a trooper and has one more flight under her belt. My parents were due to leave on Saturday but we talked them into staying and helping us put up the Christmas tree and decorate around the house. It was a great family fun day. This way, they were also able to get up early and drive straight thru rather than having to stop and stay somewhere along the way. Also traveling thru the day was better we felt because of the ice and snowy roads along I-70. There is some bad Midwest weather right now thru the Rockies. Praying for their safe drive. We did have an amazing dinner last night to send them off right. The most amazingly tender steak, baked potato, baked beans, asparagus. Oh it was an amazing little cheat my husband let me have. So other than the EXTREME pain in my feet and lower legs, I’m feeling very well. I’m trying to keep them elevated to keep the swelling down but then I’m also trying to use them as much as possible so I can stretch them out and hopefully eliminate some of that pain. And that, is pretty much what has been happening around here. Nothing too exciting which is a good thing. Home health care comes out tomorrow, so I’ll update you on any results as soon as I get them. I think I’m going to get my quilting stuff out and start cutting on my next quilt to help occupy my mind. I’m really tired of T.V. and I can do this while sitting with my feet elevated. Thanks again to all of you who continue to pray for myself and others whom have been inflicted by this horrible disease. We will find a ay thru this. Love to all.