When I got off of work all of that changed. It's like my body said enough! I stopped on the way home for a special brick oven tavern pizza at a Friends restaurant. Zola's Lamp Post - awesome pizza and beautiful people! :) It was nice visiting while I waited for the pizza.
By the time I got home with it I was starting to hit bottom again. But I succeeded in getting 3 slices down with the hand full of pills before I had to head for the couch. The Little Drummer boy returned.
At around 7:30 the phone rang and it was Nurse Sandy. She had my 3 week blood results and they wanted me to not take the Riba and to skip the injection on Friday night. She said to take the trial drug. My Blood counts have dropped way too low. White blood count was next to nothing and my Haemoglobin was now almost at a 9. (I started this at 15.9)About half and hour later Dr. Smith called. She said not to take anything until I heard from her. Not even the trial drug. She's got a call into Roche and if I don't hear from her by 8:30 this morning that I need to call them back to find out what I will be able to take. Because it's double blinded she just doesn't know how much the trial drug is causing my blood count drop. She said that she can see by the blood work why I'm having such a hard time.
So now I wait this morning.
Last night the Little Drummer boy had the Kettle Drum out and was beating it hard no matter if I sat up or laid down. I took 2 Tylenol and a nausea pill and headed for bed....but his drumming was relentless.
Laying there I remembered that the heart pills that I take are also used to relieve migraines. I figured that I'm allowed to take them with the tx drugs so they must be safe for my headache. I climbed out of bed and made it to my purse to swallow one of those. I can Not stand migraine headaches! I'll swallow anything just to get them to stop! Jimmy was worried....I know...he asked if we should go to the hospital, all I could say was "not yet".
The inderol must have worked because I woke up at around 2am with only a small Snare drum thumping. Thank God.
Awake on and off for the rest of the night and this morning I'm back to feeling ok again. I still can't walk very far, very fast, as my heart rate flies high and my body aches are still lingering....but my head is clear and the Drummer boy is quiet. I have a sore in my nose and a slight sore throat to go with it. I think I might need to re-up the humidifiers in the house.
I know that the phone calls last night where not good news.....but I guess that I have to look at it in a positive way....I am Not supposed to feel This bad! Thank God because I was getting scared thinking that this is what it will be like for the next 44 weeks. I'm hoping that they'll adjust my meds and that I can feel even a little better....if I can just feel a little better....I know I'll be alright.
And still another positive...I've hit the bottom in the blood work category and I've still found a way to function.
I still made it to work.
Now I know I am as strong as I believe I am.
I have however come to the point that I'm going to hire my Step Daughter (from my previous marriage) to do house cleaning for me. My house is suffering and there's not a damn thing that I can do about it. Poor Jimmy is trying to juggle the Bar/Restaurant and the housework all at the same time. He's over loaded and isn't sleeping well to begin with. Hiring Athena will also be a treat for me because I'll be able to see my Grandson more often, I'll get to sit with him while she cleans :) Yes I divorced their Father but not his kids and they call me Grandma :)
Well that's it for now....I'll wait the hour and a half this morning for Hershey to call me back to tell me what I should and should not take. I do hope that this will not boot me from the trial. I'm thinking that it will only adjust the drugs that I've been on. I'm also hoping that they won't tell me to come to Hershey today. I'm not wanting to take the drive or hang out in a hospital over the weekend.
For right now I feel ok...but I am worried. :)
6 comments:
Going to work should not be your biggest concern right now, save your energy for yourself and your family. I think you're probably on the highest dose of study drug. I'm not sure I agree with the idea of skipping your injection - Pegasys has been proven to cure HCV, the study drug is just being studied. Let me know what they tell you to do,
The study drug has crashed the hemo. When your hg goes below 10 you're a candidate for procrit. Stopping the SOC drugs and continuing the test drug is oh so self serving. I'm really worried about stopping the SOC at 4 weeks, could lead to a vital breakthrough. These Roche people are so harsh and I don't like your nurse at all.
They called. I have to reduce the Riba by taking 5 per day (was 6) and stop the Study drug and no injection until after I see Dr. Smith on Monday.
We'll see. For now I follow instructions ....I don't understand most of it.
I agree with Terry...I'd do what they said about reducing the ribas, but take the shot, and skip the study drug. If I see you online early tomorrow morning, I'll call you. Exactly what are your ANC and WBC numbers?
Beautiful Laurie...Forgive me for taking so long to blogg with you... About the Drummer boy, It may sound funny, but I often get an ice pack, go to a place with no light or annoying noises, and breath slowly. It helps to rotate the ice pack. I know it sounds very silly and "unmedical" but it works for me. It does take a little while, but everything gets much more bearable if I take the time out to attend to it.
PLEASE don't be thinking about WORK!
The best anti nausia drug I know of is Zofran...I don't know the generic name for it. But i do know compazine sucks (also don't know the generic name at the moment)..it is usually what they try to give you first, insurance wise, it's cheaper...It does have some terrible side affects. I became paralized on one side of my face from it. Save your energy to do and get what you need drug wise, affection wise, and filling your spirit wise. Thease things will help you heal...There will always be more work. more jobs.
I think you hit it on the nose when you said a good day is a day that you can think clearly- your mind is on a good track...
about the A.D.'s, My only concern is the liver... But if you can find a way to ease your mind, take the edge off of a racing mind...PRICELESS! believe me. Half of healing as you know is staying positive. If you find you need something to help your mind be more settled, consider it one of lifes gratest miracles. I may be out of line here, because i may have missed some of your writings, I don't know how you feel about A.D.s
has anyone mentioned medicinal marajuana yet?
when is a good time to call you? i'd love to talk for a bit if you are up to it.
Terry and Iris, I'm affraid to go outside of what the Doctor is saying. Expecially since I've woken up this morning feeling like I may be getting an infection in my throat. It'll only be until Monday and then hopefully I'll resume the injections...yea haw. :(
Iris, Maybe I'll try calling you tomorrow night. I just don't feel up to it today. I just want to hide under my covers. I don't feel to good.
Teekasmom, It's so nice to meet you. Thank you for the ice pack advise. I'll try that next time my little friend begin his ruthless beat. I'll try anything just to get him to stop. lol.
A.D.'s are in my future...I know it. For right now I'm pretty sure that a lot of my problem is the low blood counts as I am weak and becoming sick. Something about crying gives me a release.
Marajuana I tried myself. But I find that unlike most people, I have a hard time sleeping because of it. It's also not legal here to use even for medical purposes and I find myself worrying about having it around expecially since my ex-husband is under a federal indictment for being an asshole drug dealer and has been waiting for his sentencing. Even though I was not involved myself, I was married to him while he decided to be such an asshole. I worry about the risk.
I'd love to talk to you...but for this weekend I think I'm just going to crawl into my couch and hide.
The evenings are best. drop me an email when you get the chance and we can swap numbers
Take care everyone.
Thank you for you thoughts and support.
((Hugs))
Laurie
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