Monday, April 27, 2009

Back on the Laptop....

Spent 2 hours today with a tech guy from my broadband company and he finally figured out why I wasn't able to get online via my laptop. Something weird with my virus protection program, so we un-installed and re-installed and that did the trick. I was thinking I had a problem with my router at first, but kept getting info that it was sending a signal and my laptop was getting a signal from the router, so who knows what happenened! He said it may have occurred when I received automatic updates from the virusware program. Anyway, that's all cleared up and I'm glad because sitting at the desktop was a killer for my back and I needed the laptop to be able to sit comfortable and work on it. Now if I can just get my body on track......had the transfusion last friday and didn't have any positive results that I could feel, although I did have color return to my face. I was truly white as a ghost and looked like hell. Still not feeling right though, so gonna have him check my thyroid levels as I kinda feel like I did when I started to have thyroid problems about 5 years ago, so I want to see if maybe I need to change my medication levels with that hormone. I feel kinda shaky, low pulse, short of breath....just not feeling right. I know my body well enough to know when it's not right and it isn't right now. Hope it doesn't take long to figure this out, as it's just wearin me out. I feel like yelling....."give me a break".....I just had a horrid UTI, a blood transfusion, CBC #'s whacky from starting chemo again....I just want things to get back to my "normal" so I can focus on staying healthy despite this cancer. Sounds weird huh?

Sunday, April 26, 2009

Still Not Right......

Just a quick checking in as my laptop is still down and sitting at the desk to work on the computer just doesn't cut it for me becasue of my back pain. So to update...after fighting a UTI for 3 weeks, went to doctor appt and in 2 weeks both my WBC and RBC went to near crashing levels and that's only been on chemo for 3 weeks off and on. He had me stop it for a week with the UTI stuff and then on a week and then off again because of the low blood counts. Neutropenia so bad I required a shot in the office and the RBC so low, I had to go to the hospital last friday for a 2 bag blood transfusion. Something is very wrong with me. Pulse is only running about 48 (80 is normal), am short of breath, very weak, I'm just not doing well and I want to be back to normal so bad so I can focus on battling the MM, but right now, all the fight has left me.

Monday, April 20, 2009

Laying Low....

Hi All
haven't been on the computer much this past week or so. Guess you could say I'm layin low for now, as I have a sneaky suspicion I still have a pesky UTI. Still have some "unexplained" temperature spikes at night and just all around feelin kinda punky. I go for bloodwork and urine on Thursday so I'll see what's up then.
Hang in there with me :)

Sunday, April 12, 2009

Happy Easter .....

Just a short note to wish you all a
We had a great dinner at Mom's and Kevin and Ashley joined us.
At our prayer......
I gave thanks for having food on the table, family surrounding us and gave thanks that we are where we are meant to be and asked to be blessed with strength and courage for us all.

Friday, April 10, 2009

Still Pluggin' Along :)

Today's Friday and I feel even better than I did yesterday, so all systems are a "go"! Feeling as bad as I did, is again a HUGE reminder that we need to be thankful for our health and our good days. I do thank The Universe every day for being allowed to live to fight the good fight, but when you get as sick as I was, it brings it all back into even MORE perspective and focus. Being human, we do tend to "take things for granted", so we need little nudges or reminders that we all do have an expiration date, so again, be thankful to the Universe for all that we have and all that we are. Have a GREAT Easter holiday with family and friends, and know that you all are in my prayers. I really couldn't do this without you :)

Thursday, April 9, 2009

WHEW>>>> I'm Back!

Well howdy howdy howdy! I've got good news and OK news ..... Sorry I have been gone so long, but I honestly did NOTHING for almost a week. Actually, couldn't do ANYTHING for almost a week. Once upon a a far-away land (fever world), I started to run a temp of 103 and it fluctuated between that and 99. for a week no matter how much ibuprofen I took. Long story short, it turns out I had a massive Urinary Tract Infection...the 2nd one in a month (but the first one was nothing like this one)...and it truly kicked my ass. I was so weak from both the fevers and the infection that I had to rest walking from my bedroom to the kitchen! Everything was a struggle. I cannot believe that a UTI could knock you so down and out. Also being on my 1st week of chemo lowered my resistance too so they must have gotten together to create the "perfect storm" in my body. On friday, Mom drove me to see Dr. Nair and he did the blood and urine tests and then sent me to the infusion room to hang a bag of IV antibiotics to jump start this thing and get the show on the road. I thought it would start working pretty quickly being IV but I didn't feel near human until a few days ago....Tues....and that was only operating at about 70% at best. Walking to get the paper in the morning was a BIG DEAL. I really am in awe of how awful a UTI can make you feel. At my friday visit, Dr. Nair told me to hold off on the chemo and not take it until I saw him today. So today, my regular monthly visit, he re-tested the urine and I STILL have a UTI so he switched my antibiotic but I do re-start my chemo tonite. The urine has improved from what it was, but there is still bacteria in there. What stubborn little f*cks they must be! Bloodwork a little low in a few areas, but that's due to the infection, so I go back for bloodwork in 2 weeks and in the meantime I start on a sulfa based antibiotic tonite and hope it knocks it right out this time.
I have what I think is GREAT NEWS regarding my Multiple Myeloma though! On my visit to the oncologist that March 3 when he gave me the news of the return of my MM, it kinda threw me for a loop that day because I had been coming back with ZERO MM cells ever since my transplant. Some of that visit is a blur after telling me it was back and I remember him saying that he had received my bloodwork back and that he was sorry to tell me that we were "going down the relapse road", so he was going to start me back on my prior chemo regime to get a handle on it. Usually I ask alot of questions, but that day I was just so blown away I couldn't form a question! So in between that day and the day I went back for my UTI IV meds, I had time to formulate questions to ask him and one of my questions was to explain what the numbers REALLY mean. There is a normal range, just like any bloodwork has, so I wanted an explanation of what my numbers meant and what it really means as far as what was goin on inside my body. He explained that to be in a full blown relapse, the numbers must be 25% OVER the highest end of the normal range. I am only 5% OVER the normal range, so he does not consider me in a full blown relapse right now. My numbers mean that, yes, the MM has returned HOWEVER we caught it so early and the numbers are so low, that he is NOT worried about me and thinks that this round of chemo just might do the trick. So the plan is to stay on this about 9 mos to a year, and then a bone marrow biopsy to see where we really are and if there has been any damage. So needless to say I am thrilled with this news of my numbers being so low and not considered unmanageable! YAY! Not too thrilled about going back on the chemo, but hey, if that's all I have to do, I'll manage all the little crappy side effects. I'm just hoping the fatigue doesn't hit me as hard as last time, but then again, if it does, I can manage that too and I have to stay on top of the weight thing, so next grocery shopping list will include lots of ice cream, whipped cream and fudge sauce and any other fattening thing I can think of! That's it for now.....good to be back :)

Wednesday, April 1, 2009

Chemo Day 5.....

Actually I've only taken it 4 days, as I take it before bed, so that's just 4 doses so far. I was on this same med, same dosage, for 14 months prior to my BMT with relatively few side effects. Lots of fatigue......really thirsty.....appetite change which made me lose weight and taste buds changed but I could handle all of that. I woke up this morning really thirsty and downed 1/2 a bottled water right away. Just guzzled it. My morning coffee tasted starbucks frappacino which I love, tasted watered down and I put it back. I also woke up with 3 blisters on my lower lip with a 4th one starting . I put blistex on it to keep it moist with plans to call Dr. Nair tomorrow. Reason I didn't call him today is I was on the computer all day as my laptops been acting weird (real slow) and that's before this worm thing! And I didn't know it was gonna take all dang day to fix it! Problem is Revlamid DOES NOT cause blisters but neutropenia does (which you get from chemo when the chemo makes you blood cell count too low. And now....on top of that....I felt a little weird about 15 minutes ago, so I took my temp and it was 103! No adult should run a fever that high. So I took 600 mg of Ibuprofen (can't take aspirin as I am already on coumadin and I don't want to bleed out.) I feel myself being weird right now (feverish) so wanted to get this entry in before I go to sleep or something bad happens. I'll call doc tomorrow so I just hope I get thru the nite ok and it's not my kidneys or something else. Not calling Mom or my sis, because what would they be able to do and it would just make them worry. And if I call Dr. answering servide, he'll tell me to go straight to the hospital, which I'll probably end up doing tomorrow anyway, if I don't stop the fever. I'd rather sleep in my bed tonite. I'll take my temp again in about an hour to see if the ibuprofen kicked in, but somethin is causing the temp, so sort of infection I presume or it may just be the low white blood cells. Will find out one way or another tomorrow. SHIT SHIT SHIT>>>>>>I am sooooooo sick of this shit. Only 4 days and all these symptoms already? Love you guys....and good nite.