Friday, August 27, 2010

Taxol Day 4 and 5

Still have the bone/joint/muscle pain.  Ibuprofen doesn't seem to help any, so when it gets bad I take a percocet.  I've been sleeping in the recliner, because for some reason "reclining" hurts less than laying all the way down on a bed.  Also, if the pain gets bad, rocking helps.  I've kicked Rich out of the recliner in the evening so I can sit there and either put my feet up, or rock. :)
Speaking of feet, mine have been more swollen than usual.  I think the swelling is lymphedema from the lymph nodes I had removed during my colon resection last year.  Not sure why its worse now though--don't think its a blood clot because the swelling would be worse, and both feet probably wouldn't be swollen.
About the only other side effect I have from the Taxol is loss of taste.  Things don't taste bad, but I can't fully taste them.  Everything tastes sort of "watered down". 
Overall, this chemo isn't as bad as the previous chemos I've had.  There has been no mind-numbing fatigue, no nausea, no awful taste.  Just the pain.  But that comes and goes, and when its bad, I can take something to help.
Alyssa is here visiting today while Jaren is at work.  She had her 4 wisdom teeth pulled yesterday, and is still very sore.  She thought we could be "miserable" together!  Its always nice to spend time with her--even if I'm doped up, and she can hardly talk!
Hope everyone has a nice weekend!!

Wednesday, August 25, 2010

Taxol Day 3--Ouch!

Well, the side effects found me!  As soon as I woke up this morning I could tell today was going to be different.  I've been much more tired, even though I slept well last night.  Took a nap this afternoon, and I am still tired. 
I've also been getting the body aches that sometimes comes with the Taxol.  Started out as minor aches earlier in the day, and they are getting worse.  I've taken Tylenol and ibuprofen.  My back, hips, thighs, knees, wrists, and ankles all hurt. Oh, and shoulder/neck area.  Might have to increase the amount of pills I take.
I'm really hoping this only lasts a day or two!
Still no nausea.  But things don't taste very good.  I just had some mashed potatoes (instant) and a plum for lunch.  Then around 5 I was really hungry and wanted something in my stomach so I could take some pills, so I ate some cereal.  That was flavorless, so about an hour and a half later I ate some peanut butter toast--tasted terrible!  Now it's 8pm, and I might try some popcorn and orange juice.  I keep hoping something will taste good!
Well, that's my update on day 3!  I'm glad I only have 3 rounds of chemo left--then I'm done!  Hopefully forever! :)

Tuesday, August 24, 2010

Taxol day 2

So far so good!  I'm going to try to update this blog every day or 2 to keep track of my symptoms.
Last night (or I should say this morning!) I didn't get to sleep until after 2 am, thanks to the steroids I got at infusion.  They didn't keep me awake on the AC chemo, but I sure was awake last night!  I finally took an Ambien around 2, don't know why I didn't think of it earlier.  I slept until 6 when Rich got up, then slept for about another hour after that.  Then the brain started going again.  I've been pretty tired all day, but didn't get a chance to take a nap, so hopefully I'll be able to get to sleep early tonight.  I did use that late night awake time for some prayer and Bible reading!
Other than that, there is not really any side effects to report!  I was so happy when I woke up this morning because my stomach did not feel the least bit nauseated!  I said "thank you Lord!"
I had to go back to the hospital today to get my Neulasta shot to keep my white blood cell counts up.  If I were doing the weekly Taxol, I wouldn't need the shot because it's not as hard on the white blood cells.  My onc. told me that Taxol isn't hard on the red blood cells (so maybe my hemoglobin will start to slowly come up--it was 9.9), or the platelets.  My platelets are back up in the normal range.  This is good, because if I start getting the bone/muscle/joint pain that a lot of women get on Taxol, I can take Ibuprofen (along with Tylenol).  Some even have to take stronger pain pills.
My MUGA (heart scan) showed my heart function was down a little bit.  It went from 65% to 59%.  This is acceptable, but the decrease is outside the margin of error.  It may be from the Adriamycin, or it could just be where my heart was at that moment in time.  I'll have another scan in 3 months.  The Herceptin I'm getting with the Taxol can also cause heart damage, which is why I'll continue getting these scans.  Usually the damage is reversible once the drug is stopped.
I suppose the title of this blog should say "Taxol and Herceptin", but the Taxol is the one most likely to cause side effects.
Sunday when Pastor Mark Spencer wanted to pray over me I mentioned how I'd be starting this new chemo the next day and was a bit anxious about it.  I told him and the others there that everytime I walked into Regions Hospital I started feeling sick to my stomach, even thinking about it made me start to feel that way.  So he prayed for my mind, that it wouldn't cause me to feel that way.  Well, it worked!  I didn't want to take an Ativan before I went like I usually do, because I didn't want to mix it with the benedryl I knew I'd be getting (both make me sleepy!).  I remembered the prayer, and thought that I would rely on God to get me through this.  I didn't have any of that usual nausea going in there--and not from the alcohol wipe, or the saline flush--nothing!  THANK YOU LORD!  He continues to amaze me and take care of me!
Rachel is having a garage sale to raise money to adopt the down syndrome boy they want.  If you are in the Shoreview area (near Hamline/Lex.)Thurs-Sat. please stop by!  This boy needs heart surgery and it costs ALOT of money to adopt him (or another down syndrome child , if they can't get him).  Its a huge sale--lots of stuff!  Donations are welcome!  :-)
God bless you all!

Sunday, August 22, 2010

Well, I've been feeling really good lately.  I hope that doesn't end tomorrow!  I was going to say that it will end tomorrow, but I really don't know what this chemo is going to be like.  Even though other chemos I've had have hit me pretty hard, I shouldn't assume this one will too!
A few of the pastors and some others at my church prayed over me again.  Mark, the senior pastor, told me he wants to keep praying for me each time I make it in to church (which is most Sundays that I feel well enough).  There was a missionary from India there today, and he came over and prayed too, then he reminded me that a headache and cancer are all the same to God.  Cancer to us seems so much worse, but to God its all the same, and he is bigger than any illness.  It just was a reminder to me to keep my focus on God, not the cancer.  Of course I wish I didn't have to go through yucky stuff like chemo, but I do what I gotta do!
Its still so weird to me when people tell me I'm an inspiration.  Me? Seriously?  Everytime someone tells me that, I give thanks to God that He's allowed me to 'inspire" someone.  What an honor! It really makes what I've been through worth it.
I've had a busy week, and weekend.  My nephew got married to a wonderful girl on Sat.  The wedding was in Red Wing--what a beautiful view from the historic hotel where they were married!  Lots of windows with views of the river and bluffs--almost as pretty as the bride! :)  Its about an hour drive from here.  It was nice to be out having some fun.  I do have to say, however, that finding something to wear (not too low cut, and need a scarf to match) is not much fun these days.  Oh well, the important thing is I didn't let it stop me from going and having a good time.  It was nice to visit with people I haven't seen in a while.  Everyone was so kind and supportive.
Today was church, then lunch with Alyssa and Jaren, then some grocery shopping.  After that I didn't do much else--which was nice!  Oh--I made Rich some cookies, but not homemade--I used the pre-made cookie dough that you spoon onto a pan and bake.  Rich likes to keep a bucket of it the fridge--there is not much he likes better than warm chocolate-chip cookies!!  (no oatmeal, no nuts, etc--don't mess with his cookies!)  If I'm feeling well enough this week, maybe I'll make him some real ones--or some brownies--yum!  For Rich, it has to be chocolate!  :)  I have a new crock pot recipe I want to try too.  See?  I'm planning on feeling well enough to do something this week--not just lie in bed!!
I'm missing my baby girl--haven't heard from her the last few days.  Trying not to bug her, and just let her be "independent", but it sure is hard!!  Love you Shonna!
Tomorrow is going to be a looong day!  We have to be at Regions at 8:30, and the infusions will take several hours, because its the first time getting Taxol and Herceptin, so they go real slow to watch for reactions. I better get to bed!
Love and blessings!

Wednesday, August 18, 2010

Time for an Update!

Its been awhile!
The trip to KC to move Shonna there went pretty well.  I guess the worst part was the heat!  Even hotter than it was here!  Rich, Alyssa, and Shonna left Sunday (the 8th) and Rich got back home about 11:30 the following Tuesday night.  Poor Rich had to drive through heavy rain and thunderstorms starting in mid-Iowa, and lasting all the way home!  Shonna is doing very well.  She has been staying by herself, because the family that she is living with left on vacation the night of her first day there.  I think the hardest part has been killing spiders on her own.  :)  There was an adjustment time for her, being so far away from us, but, like I said, she is doing very well.  She is relying on God now.  I am doing pretty well too :), but I do miss my baby!
IHOP (Int'l House of Prayer--we call IHOPU the "pancake school"! lol!!) has a prayer room that has prayer and worship 24/7, and they have a live stream. I've been listening to that alot lately, esp. in the morning when I have my prayer and Bible study time.  I have it going now too.  I wish I would have thought to listen to this when having rough days from chemo.  But, I'll remember to turn it on during this next chemo--even though I'm SURE I won't have any rough days!
Speaking of which, I start Taxol and Herceptin next Monday.  NOT looking forward to it.  I heard a great saying on the BC forum "You don't have to be brave, you just have to show up".  And that's what I do, I just show up.  Put 1 foot in front of the other....I will need to take an Ativan before though.  It seems everytime I walk in the door of Regions Hospital I start get sick to my stomach now.  Its really annoying.  I was nauseated the whole day Monday from being there to have my MUGA scan.  It hurt when they accessed my port, and that just made the nausea worse.  I can feel it even now, just talking about it!  Anyway, the Ativan helps with anxiety and nausea--maybe I'll take 2.  :)
My MUGA scan went well, the test itself takes about 20 minutes.  I have to lay with my arms above my head, and my left arm (mastectomy side) really hurt when I finally got to put it down.  But, thankfully, the pain didn't last long.  I probably won't know the results until I see my onc. on Monday.  I'm assuming its fine.  If my number is a lot lower than my first one, I wouldn't be able to get the Herceptin.  I had an EKG at my primary clinic today, and that was ok.
Yesterday I saw my radiation onc, Dr. B.  I really like him, and esp. his nurse Doni (who took good care of me last year!), but when I left last year I told them I never wanted to see them again!  They weren't convinced when I told them yesterday that it was good to see them!  Soooo, its just as I expected, I do have to have radiation.  It will start 2 or 3 weeks (depending on how I feel) after chemo is done, and it will be daily (Mon.-Fri.) for 6 or 6.5 weeks.  Dr. B hasn't decided yet.  But he was sure that radiation would lower my risk of recurrence.  He feels, given my "young" age, that we should be as aggressive as possible.  I agree!  I know I'm getting the strongest chemo treatment too, so bring on the radiation!  I want to be around for many, many more years!
The main side effect of rads will be sunburned-like skin.  It can get quite painful.  Given my history with rads last year, the doc said if it gets too bad we can take a break.  He said last year I was an "outlier" meaning my reaction to rads was outside the "norm".  I am supposed to start moisturizing my chest area now, to get it ready.  Fatigue can also be a side effect.  Sometimes they don't know if its actually the rads causing the fatigue, or the stress of having to go there every day, and after being beat up by chemo.
(Cool--I hear thunder!)
I sent in my letter to HR requesting another medical leave of absence.  I said that I plan on being back to work on Jan. 4th--that is the first day back after Christmas Break.  My treatments should be done the first week in Dec., and of course that is if I stay on schedule.  Last year I didn't stay on schedule, and I ended up going back a lot later in the year than I planned.  I've also been filling out my paperwork for long term disability.  If I qualify (I did last year), I will get 2/3rds of my pay.  That will help alot!
Its been so nice to have this 4 week break from chemo.  I've been getting some things done, and getting out to some lunches.  Last week I went to see my friend at church and helped with some stuff there (I used to help weekly).  It felt good to be "useful" again! 
Brennan is getting so big now!  He's 10.5 months old.  He finally figured out crawling, but he LOVES to walk around (and around and around!) holding onto your hands.  Then he gets mad when you stop!  We get to watch him tomorrow--I have his pack n' play little crib here in Shonna's old room for him to nap in.
Jaren started a new job as a CSO (Community Service Officer) at a nearby police dept.  Its where he's always wanted to work.  And they've wanted him too.  He'll continue to go to school, then eventually he can become a police officer there.  Alyssa has been busy with cheerleading, and classes start next week.  She was a very good substitute for me on the trip to KC!
Rachel and Ken are looking into adopting a special needs child, and are starting the process for that (it takes awhile!).  Rachel has a new insulin pump and it is working very well for her.  Her diabetes is under good control now!  They are also busy with some beehives!  They got about 5O lbs of honey and plan on selling some.
Well I think that's enough for now!  I'll try to update sooner next time--but it probably won't be until after chemo on Monday.
Hope everyone is having a great week (and if you live nearby you better be enjoying this BEAUTIFUL weather!!).

Sunday, August 8, 2010

Empty Nest

I haven't posted here all week, because I've been busy helping Shonna get ready to move--and when I haven't been doing that, I've been resting! 
Wed. I started having a lot of pain from my radiated area (from last summer).  I don't know if I posted about this before, but its called radiation recall dermatitis. Certain chemos "recall" the skin irritation done previously by radiation.  It's been bothering me on and off, and Wed. it was really painful, so I took percocet throughout the day (low doses).  Thurs.  I just needed 2 half pills to keep the edge off.  Friday I went to the cancer center to see the PA, Stephanie.  My onc is out of town for 2 weeks.  She gave me some ointment to help, and told me to keep taking the percocet as needed.  I always worry that they (the docs) are going to think I'm some sort of junkie when I tell them I took some pain pills (even though I hardly ever take them!).  Its nice when they ask if I need a refill!
I've been feeling better since then, and able to do more physical stuff yesterday.  We loaded up the van and Shonna's car to have it all ready for her leaving this morning. Oh--I decided not to go with.  Alyssa went instead.  I was feeling so crappy all last week, I just didn't think I could make it. I can hardly go up 1/2 a flight of steps, and I wouldn't have been much help moving all Shonna's stuff up to the 2nd floor (or 3rd?). Rich would have spent too much time worrying about me.  This way they have more help (Alyssa), and don't have to make any special stops for me.

It was tough saying goodbye this morning!  Tough for Rich and Shonna too!  She'll miss her "mama bear", and I sure will miss my baby!  From previous experience I know that everything will be ok--that she'll still be living here sometimes, and that it will be fun watching her grow into an independent young woman.  I so enjoy my relationship with Rachel and Alyssa now, and that has helped me to not be too sad. It also helps to know that God is really in this, and Shonna is following His will for her life.  He will take good care of her for me! Besides--I have a spare room!!!  You have no idea how exciting this is to me!  I've never had a house that had any extra storage space.  My mom lives with me, and her stuff takes up alot of room downstairs  (not complaining--just saying!)  I hope I can get the room painted and put together before too long. I'm looking forward to growing old with my hubby, and being a good grandma.  :)
Tomorrow will be 2 weeks since my last chemo, and 2 weeks until my next.  I hope to enjoy this break as much as possible.  Next week I have a MUGA scan and EKG on Monday, and an appt. with the radiation doc on Tues.  The MUGA is a heart function test that I have to have done before I start Herceptin.  Adriamycin (one of the chemos I just finished) and Herceptin both can cause heart damage, so this test will check to make sure no damage was caused by the Adriamycin (they will compare it to the test I had before starting chemo), and then make sure everything is good to go for the Herceptin.
The Radiation Therapist (Dr. Bisignani, or Dr. B.) is the same one I had for radiation last year.  Told him I never wanted to see him again!  Oh well, I really do like the guy, but radiation was really tough on me (and still is!!).  He's the one that gets to decide whether or not I need radiation this time.  I had 3 nodes with cancer, and 1 of them the cancer grew through the node to the outside.  4 nodes definitely need radiation, and 3 is sort of a "gray" area.  But with the cancer growing through the node, I'm pretty sure I'll need it too.  I will pay more attention to what the side effects might be and I want reassurances that there will be no heart damage (its the left side).  Since I had a mastectomy, I think it'll just be the underarm area that'll need the radiation, and I hear they can pinpoint it pretty well to minimize damage.  The skin will feel and look sunburned, but the good thing is that area is still mostly numb from the surgery.  If I do have to have radiation, it'll be after the Taxol is done (2 months) and while I'm still on Herceptin.  Radiation would probably be daily (except weekends) for 6-8 weeks.  Yeah, I know, sounds like fun doesn't it?  I was just telling a fellow bc survivor today that I have to keep in mind that my prognosis is good after all this treatment.  Just gotta get through treatment!
Well, I've decided to not be too mopey, and enjoy this "quiet time" I'll have the next few days.  Some woman pay to stay in a hotel to get this--I can just stay in my own home and do what I want for the next few days--every mom's dream right?  I had lunch with a friend today (yeah--had to quickly wash away the tears from the "goodbye" and re-do my make and head off to lunch!)  Tomorrow I am having dinner with mom and Dee (and maybe Rachel?).  Sadie (my 11 yo dog) and I are gonna have some "girl" time!  Maybe I'll paint her toenails....hmmm.
Have a great day everyone!!

Sunday, August 1, 2010

The Last of the Bad Days

I'm hoping and praying that yesterday was the last "bad" chemo day I'll have.  I feel a bit better today, so things are headed the right direction!  Yesterday I was so weak and out of it, I could hardly stand it!  I kept trying to sit out on the couch and be a part of what was going on around the house, but I just couldn't shake the fog.  Probably one of the worst fatigue days I have had.  I am thankful that the nausea is not bad. I've taken one or two anti-nausea pills each day, and they are working.  Yesterday and today I was very weak in the shower--I take a quick one and then go lay down until my heart stops pounding!  So, even though I'm feeling a bit better, I still won't be doing much!  Each day I should get a little stronger. 
I've got so much to do this week!  Shonna is moving to KC next week!  We are driving her down next Sunday, and we'll come back on Wed.  I'm not sure I'm ready for this empty nest thing!  Sometimes I'm excited, sometimes very sad. I guess that's all normal when your baby goes to college!  I am very excited, though, to watch Shonna grow and shine, and see what God has in store for her.  Same way I felt about Rachel and Alyssa as they went off to college.  I'm so proud of them all!  Yes, the relationship will change, but it is a new and exciting time!
Ok, enough of that!  Last Monday when I had my last AC chemo (yay!), my onc and I talked about the next steps.  I have to have another chemo called Taxol, and that can cause neuropathy.  Dr. J checked my hands and feet and decided I should have the Taxol every 2 weeks instead of weekly, because its better for the neuropathy (which I already have from chemo last year).  Some of the other side effects may be a little worse though--but hopefully not nearly as bad as what I've been through!  I'll only have to have 4 treatments of Taxol instead of 12, so I'll be done with it in 2 months instead of 3!  I will also start the Herceptin at that time, and have it weekly.  He said something about it working better when its started weekly.  After the Taxol is done, I can get the H every 3 weeks if I want.
My first chemo appt. for this new stuff is Aug. 23rd--so I have a 4 week break!  Next week I'll be in KC, and the week after that Dr. J is on vacation.  He said it is ok to wait.  That first appt. will be a long one!  The Taxol will take about 3 hours--they give it slowly the first time to watch for allergic reactions.  I'll get decadron and benedryl in the port first.  Not sure what anti-nausea med I'll get--Dr. J and I will talk about that first.  I guess he usually just gives a compazine pill, because the nausea isn't too bad, but the nurse said since I have a history of more nausea (lasting for days), he might stick to what's worked for me in the past.  Then I'll also get my first infusion of Herceptin (H), and that takes a long time too.  The following infusions of H will only be a 1/2 hour, and the Taxol will go quicker too, as long as there are no problems with it.
Well, that's my update for now.  Starting to get hungry, which brings on the nausea--better go find something to eat! :)
Love and blessings!