A LONG week!

Well, I see I haven't written since last Wed.  The "yucks" were just starting to set in at that time...seems like a loooong time ago!  Thurs., Friday, and Sat. were spent just as expected--just trying to get through each day, spending a lot of time in bed.  Sat. morning I managed to get out for a very short shaky-legged walk, and in the evening Rich took me on a little drive and we got a DQ.  Unfortunately I've been craving chocolate malts--which is unusual for me!  Looks like I won't be losing as much weight this time around!  Sunday morning I still felt like crap, and when I took a shower I started to black out--literally eyes going dark.  Rich came in and helped me get to the bed, and I layed in front of the fan for a bit.  We debated calling my oncologist--it was the 4th, and I didn't want to spend time in the ER (not that I was going to do anything else that day!).  I've also had some chest congestion and a cough for over a week--I was concerned that might have had something to do with the blacking out.  I just took it easy the rest of the day.  Rich went to Jaren's parent's house for their 4th of July party, and I stayed home and played Facebook games!  (don't worry--he called and texted me often, and he was only 5 min. away!).  The next day, yesterday, I felt light-headed again in the shower, but caught it quickly so I didn't start losing vision.  Again, I layed down for a bit.  Then, since my hair has been coming out in handfuls, Rich and I went out on the deck and he cut it short, and buzzed the back with his trimmers.  Later I went out to the garage to watch the heavy rain with Rich, and felt woozy, and had to go sit down.  By this time I also had a little fever (99.5), so I thought I better call the doc.  I spoke with the on-call nurse (everything was closed yesterday!), and she was concerned about my heart and wanted me to come in right away.  She even said the safest thing to do would be to call 911 and take an aspirin.  Ummm, no.  I was worried about my heart, because one of my chemo drugs can cause heart problems (though supposedly rare), but didn't feel I was having a heart attack.  So Rich took me down to Regions ER.  The nurse had let them know I was coming, and because of possible heart issues, I got taken in within a few minutes.  I wore a scarf for the first time--one with a cap attached because my hair is falling out all over.  I felt guilty and that people were thinking--oh sure, the cancer lady gets to go right in....Although no one probably even noticed. Anyways--long story short (sort of!)--I spent several hours there, and didn't find out much!  I think the light-headedness is low blood pressure from the chemo.  My bp did go pretty low once while I was there (99/45ish).  The heart and chest were ok.  The biggest problem they found, and what took so long, was my white blood cell count was extremely low.  It took awhile because it was so low they ran it again to make sure.  The ER doc called one of the on call oncologists(my onc's partner) to discuss what to do.  They said I could go home, if I felt ok doing so, and they would talk to my onc. in the morning and he would call me.  So I came home, with strict orders to come back if my temp reached 100.4 (I always wonder where they come up with that number?), or if I had a near fainting spell again.
When I got home I took some Tylenol (for a different pain), and about an hour later I was feeling sort of "agitated"--tense, uncomfortable.  Took my temp, and sure enough it was going up--100.2!  But I was tired, Rich needed to sleep and go to work in the morning, and by the time I got to the ER, the temp would probably be down from the Tylenol!  So I went to sleep!  I figured I could deal with it in the morning! 
My temp was in the mid 99's all morning (normal for me is mid 97's), and I finally called my onc to see if he had all the info from last night.  His nurse called me back.  He prescribed an antibiotic because of the fever, and the fact that I have no wbc's to fight an infection. 
So, that's all I know.  I feel better today, and didn't have any woozy spells.  Still lack of energy, but was able to move around and do a few things.  I feel MUCH better being on an antibiotic (altho he always gives me the scary one with all the warnings!  Its called Levaquin).  I finally took some Tylenol, and that brought my temp down and helped me to feel better too.
Rich and I just went out for a short walk--thought I could do the block, but legs got shaky and started sweating not far from home.  But any moving is a good thing.  I don't know what my platelets are, but I worry about blood clots, since I had one last summer.
I am soooooooo disappointed to be feeling this crappy 8 days out from my last chemo.  There are things I need to do!  Really frustrated...
I want to say thanks to my sis for bringing us meals almost every night last week!  We were well fed, and had lots of leftovers.  She calls whenever she's out and about to see if I need anything (Sunday I "needed" a choc. Frosty from Wendy's!).  Today she picked up my prescription for me. The wonderful peeps at church sent a meal the week before, and a neighbor also sent some food over!  How nice to be thought of!  I continue to get the occasional card and e-mail too---just friends and family making sure I know they are still thinking about me. 
Speaking of family, my cousin is in MN for the first time in 8 years, and having a grad party for her daughter.  Its about 2 (3?) hours away in the Rochester area.  I am hoping to go (its Sat.), but now I'm not so sure if I'll feel like it.  I SHOULD feel like it--but unfortunately things never work out the way they SHOULD with this cancer crap!  (Did I mention I was frustrated?)
Tomorrow night I am going to a class called "Look Good, Feel Better".  Its a popular class put on by the Am. Cancer Soc.  They teach you make up tips (how to draw on eyebrows, etc.), and hair loss tips.  I'm hoping they will teach me how to tie scarves.  Alyssa has been practicing with the scarf she got (matches one of mine), so I asked her to go with me.  I'll get a bunch of make up to bring home too.
Thursday I have another bra fitting.  Insurance pays for 6 a year, and I only have 1 good one (bra that is! lol!).
I find myself going to my list of Bible verses at the top of this page quite often.   On my worst "out of it" days, I unfortunately don't feel like praying much either--not because of any 'issue" I have with God, just because I don't care much about anything.  But I am often awake in the middle of the night, and that is when God reminds me to talk to Him.  I'll admit to a bit of "why me" lately--but as soon as I even think that I am reminded that He is with me ALWAYS, and watching over me.
Thanks for checking in!
God's blessings to all!
Tina
ps  Watch for my next post with pics of Rich cutting my hair!

A Little Update

Just a little update...not too much new.
Saturday I had a fever and terrible headache in the evening, and it continued Sunday morning, but by Sun. afternoon I was fine. Weird! The only time I've had a fever so far was when my white blood cell count was low, but since I did a shot on Wed., my counts should be way up. Usually one shot makes my counts go above normal range. Oh well, I was worried about the fever, but now I'm just glad it went away! I have a very busy week and I don't need to be sick anymore!
Last night I couldn't sleep again. I don't know why I'm still having trouble with sleeping. I didn't think about taking an Ambien until about 2am, and then I figured it might be too late. I went out to the recliner like I usually do when I can't sleep, and was still awake at 4 this morning. That's when the first birds start singing. So, I'm a little out of it, being that I only had 4 hours (or less) of sleep! Most nights I sleep fine, but 1 or 2 nights a week I have trouble either falling asleep, or staying asleep.
This coming Friday will be 3 weeks since I've had chemo. Its taking a little longer than expected to get rid of all my side effects, but overall I'm doing good. I still can't hold anything cold for long, but I can eat/drink anything I want, so I'm happy with that!!
Thurs. I see the radiation therapist--I kinda am looking forward to getting started with radiation. I'm nervous, but yet I want to keep battling the cancer, and keep moving toward the finish line! I am grateful, tho, for this break in treatment.
I'm finding that there is alot of strange thoughts that come along with a cancer diagnosis. I'm so glad there are blogs out there of others who have gone through this already. There is fear even in the strongest of survivors; its what we live with every day. It helps me to know that I'm not alone with my thoughts. Now, I don't want people worrying about me. Overall I'm pretty positive-my faith in God helps alot with that. But, if I'm honest in this blog, then there are going to be times where maybe I'm not so positive and happy. I think its important for me to "tell it like it is".
Hope everyone out there is doing well!
Love to all,
Tina

Less Nausea

Yes, I'll talk to the doc tomorrow! I see him at 8:50, after having my blood drawn. I just figured each day would get better, so I didn't really need to talk to him until my appt. If I had known I'd be sick so long, I would have called, really. I have less nausea today, but feel very "out-of-it" and woozy. I even fell over getting out of the chair! (hurt my knee a little, but nothing major!) Knowing I am getting close to 2 weeks since my last chemo (Friday) I thought I should take my temp., because it seems it always goes up, and I end up with low white blood cells. Sure enough, my temp is 100. So that is part of the reason I feel crappy! Last time my doc tried to come up with all these other reasons I might have a fever, but its just the low counts. Maybe I'm unusual that I get a fever everytime? I'm guessing I'll have to do a neupogen shot, but since I'm not having chemo in awhile, I should be fine after that.
I'm curious to see how the 5fu affects me without the oxaliplatin. I know the oxa stuff causes the cold sensation, but I don't know which one causes more nausea. The nurses think I'll do better w/o the oxalip. We shall see!
Rich was gone to AZ for a short business trip since Sun. He got back today. He really didn't want to go, and told his boss awhile ago that he wasn't going to go on any trips while I was sick, but the project needed him, and I told him I'd be fine...this was a good time for him to go. And he's even back in time for my dr. appt. But I sure did miss him!!! I think it was good for him to have a break and not have to look at me lay around for a couple of days! I told him to think of some things he can do just for himself while I'm sick. He did get some books about building bird houses. We just may end with a big bird sanctuary here when he's all done!!
On a VERY sad note--my cousin Joe died Sunday morning. I still can't believe it. Only 50 yrs old, something to do with his heart, but very unexpected. Please pray for his wife and kids, and his brother and parents. They are my God parents and have been so good to me (I keep my "special" blanket with me all the time, it really soothes me). I wish I had something that could soothe them. I've been praying for them all day, and will continue to do so as long as God brings them to my mind. Love you guys, hang in there, and hold on tight to Jesus! I'll do my best to make it Friday to give you a BIG HUG!
Well, hug your loved ones a little tighter tonight. I don't believe God causes bad things to happen, but sometimes he allows it, and we may never understand why.
God Bless you all!
Tina

Shot Instead of Chemo

Just as I suspected, my "neutrophils" are low (type of white blood cell), and I had to get a shot of Neupogen instead of chemo today. That's the shot that caused me so much pain last time. This time I took ibuprofen and Tylenol BEFORE I got the shot, and so far I'm doing ok. The shot was a lower dose, and I'll do another one tomorrow. I'll have to give it to myself here at home. Then Friday I'll go back and get my levels checked and, if everything is ok, I'll get my 4th round of chemo then.
I still have a fever lingering, but its under control with the meds. My allergies are bothering me too, but mostly I just feel tired. Took a nap when we got home today. We were at the clinic for 3 hours or so, because there was some problems with insurance and letting me have a shot at home. Our insurance is very good overall, but when it comes to "specialty" drugs (meaning expensive!) they are very particular how they handle things. But the way things turn out, I think they end up wasting more money than they save! They are going to Fedex the shot to my house instead of letting me pick it up at the pharmacy--how is that saving money?
After I get round 4 of chemo, I found out today that I have to wait 3-4 weeks before starting radiation. The Oxaliplatin drug needs to be out of my system first. I have an appt. with the radiation therapist on June 17th. Radiation will start sometime after that appt. The good news is that will give me a bit of a break from side effects, the bad news is that pushes my whole treatment out a little farther. That's not really "bad", just another adjustment--one of many it seems! The soonest I could be done with everything is probably around mid- Nov. Just in time for my grandbaby to be born!
I also found out --or just realized--that while I will be getting the 5FU drug during radiation, its the Oxaliplatin that causes the cold sensitivity and hair thinning--so I'll be getting a break from both those side effects--yay! Hopefully the radiation side effects won't be too bad.
I'm going to close with some lines from one of my favorite songs I heard on the radio today:

I will walk by faith

Even when I cannot see

because this broken road

Prepares Your will for me

(Walk by Faith, by Jeremy Camp)

Love and Blessings!

Tina

Feeling Down

I had a great day yesterday. I was awake early (my body is getting used to not getting alot of sleep), the sun was shining, the birds were singing, and I decided I may as well get up. I had my shower, hair and make-up done, dressed, breakfast, all by 8:15 am!! We enjoyed the morning, then went to Fleet Farm to buy mulch and perennials. It was almost 11 when we left there and I was ready for "2nd breakfast", so we went to Perkins. In the afternoon Alyssa and I went shopping while Rich worked on the yard. I got a smoothie at Mrs. Field's--yum!! By 8 pm, I was pretty tired, so I went back to bed to read, but then Shonna flopped on my bed and we had to finish filling out the college PSEO papers. Seems everytime I try to relax in my bed I end up with 1 or more of the kids sprawled out with me!!(I LOVE it--it usually involves laughter!) I fell right to sleep when the lights finally went out, but of course I woke up 2 hours later and couldn't get back to sleep, so I took an Ambien.
Things went downhill from there. I did sleep, but not very well, and woke up feeling tired and groggy. Stayed in bed til 7:30 am, then tried getting ready for work and just got fed up. My stomach didn't feel well, I wasn't in the least bit interested in breakfast (just very thirsty), and I knew I couldn't make it thru the work day. I called Rich and told him I wanted to be done with work (only a few days left of the school year anyway), then called school and told them. I was in tears, which is what happens when I get tired and frustrated. Today was supposed to be my best day (chemo is tomorrow), and I'm tired of thinking I should be able to do certain things when I can't. Now I don't have to get up and try to make it to work, I can just take each day as it comes, which is a relief. I'm glad I worked as much as I did, but now I need to focus on myself and not worry about who I'm letting down. (but I'll sure miss everyone!!)
As I was sitting here feeling so blue, it occurred to me that I should take my temp. This is the time when my white blood cells should be at their lowest (2 weeks after chemo). Sure enough, I have a fever. Its not very high (99.6), but my "normal" is under 98. So, I'll keep an eye on it, and if it goes over 100 I'll have to call the doc. I'm thinking this means my wbc is low, hopefully I won't have to postpone chemo again! But now I know why I feel lousy.
Wow...tired all of a sudden. I'll end here and update after chemo tomorrow. Keep me in your prayers!
Love,
Tina