My First Weekend!

Remember how I thought that I would have my energy back right away?
Well, last Saturday I felt great - so I was trying to catch up on some things around the house.  Evidently that, or the week before had caught up with me.
I got up Sunday morning to have donuts with Carrie & Justin & John after they came home from sunrise service - but then decided I needed to go back to bed, so I did - and I didn't wake up until after lunchtime.  When these"down" times hit - they come on really fast.
But I rested up the rest of the afternoon . . . so that when Jeff & Jill & Brody & Brant came back from having Easter at Jill's family - we had promised Brody that he could spend the night.  Well spend the night he did and then the three of us went to see "Rio" in 3D on Monday.  It is a very funny movie, and we had a great time.  Even went and got ice cream as a treat afterwards.  Jeff picked Brody up on his way home from work - although he wasn't really ready to go, and we weren't ready for him to leave either!

Side effects

Since I had done radiation with my first bout of cancer - I thought maybe the symptoms would show up in about the same way this time - not until the treatment was almost through. 
Well, I was wrong about that too! 
Actually the side effects started showing up about halfway through the radiation & chemo.  Diarrhea was the first thing to show up (that was a side effect of both) - and I found that Immodium might be a very good friend to keep on hand.  The couple of times that my mouth started getting a little "tingly" I rinsed it with some baking soda - I never did get any sores in my mouth.  Some of the other side effects were skin irritation (this might not be for the squeamish among you) - when that started to happen I used baby powder and preparation h to take care of that.  Believe me, you don't have to have hemorrhoids to use preparation h.  Dr. H had prescribed some anti-nausea pills to take if I needed, but I never did.
This is not really one of the "side effects" of the radiation treatments - but when you start receiving your treatments, you are "marked" with some "tatoos".  Now these are not tatoos like you would think - but actually little round black dots that they use to set up the lines for doing the radiation treatments.  So I now have approximately six tatoos (three from the first time around and three from this time) at various places on my body.  So I guess if I am asked if I have tatoos - I can say yes!  I'm just not going to tell you where - or let you see them!

I am a free woman!

Or so to speak anyway!
On Friday, April 22 (Good Friday) I finished up my 28th radiation treatment - and also did my last day of chemo (about 5 weeks total).  Wow was I anxious to be done!  And, in my mind, as soon as I was done with all that I would automatically get my energy back.  Of course I was wrong!  I'm hoping that will come in a week or two!  Actually I am feeling very good and love having everyone tell me that I look good!  So now we wait to let the radiation & chemo continue working to shrink or get rid of the tumor completely.  The next step will be surgery - but at this point I don't know when that will happen yet.

The Wall

Half of April is gone - and we officially passed Income Tax Day . . . here in Fremont, Nebraska, we celebrated that with some rain and then some wet, wet snow.  At least here it only stuck to the roofs and the grassy areas - not like out west where the interstate was closed for 17 hours because of all the snow they got!
Anyway this has been an exciting week - I was looking forward to the next to the last week when I finish up radiation and hopefully chemo.  I started off the week with radiation treatment #20 on Monday, April 11 and started week 5 of chemo on Wednesday, April 13.  This was also the week to get the newsletter out at church.  Everything was going along fine - until I got home from the Lenten service Wednesday night - gosh was I tired!  So, as is not uncommon, I fell asleep in the recliner and woke up around midnight or so and went to bed.  Got up not feeling too bad on Thursday morning, was still really tired - but I went to work because after all, my volunteers were coming to get the newsletter out.  Well by the time we got done putting things together I knew that I had to get it ready to go to the Post Office and go home!  (Thanks to Marvin & Myron it actually got to the Post Office.)  So that's exactly what I did - and went back to the recliner!  About 2:30 I called Dr. Z's office to say that I wasn't feeling well and thought I should stay home - they thought so too!  And I stayed home from Small Group that night too - I really missed you guys though!  So no radiation treatment on Thursday, April 14.  On Friday,  I had radiation treatment #23 - and they will add the one I missed on Thursday on to the end - so I will have radiation treatment #28 on Friday, April 22 (Good Friday).  I'm still not sure what I did to over extend myself, cos I hadn't had a very busy week at all, although I felt like I was fighting a cold - but I definitely hit the wall on Thursday.  Friday I went to work for half a day, and then came home and rested after that.  I hate to be such a weinie!  But Dr. Z told me on Friday that my energy and my immune system would bounce back pretty quickly after the radiation treatments and chemo were done.  I am hoping that when I see Dr. H next week he will tell me that I'm done with the chemo too, but we'll wait and see.  Either way - I'll keep you posted on where we're at!

Low Fiber Diet

While going through radiation in this process, I was given a low fiber diet by the radiation oncology office.  At first I thought this was going to be my free pass to eating junk!  Instead it has been a whole new learning curve for me I'm afraid.  I have been on a high fiber diet from the time we started looking at my cholesterol and blood sugar issues.  So this has been quite a change!  I went from wheat bread to white bread, brown rice to white rice, whole wheat pasta to white pasta.  I was also told to avoid fresh fruits and vegetables.  Like I said - this is a learning curve:  so I decided to go to the internet (doesn't everybody do this) and see what I could find about low fiber diets.  Of course, some of the information contradicted itself, but I did find that there were some things that I could try - like cantaloupe, and watermelon.  I am eating all of my vegetables cooked nowadays - and I can have as much yogurt, milk products, jello, pudding, fruit cups, fruit cocktail and cottage cheese, eggs and tuna as I want.  And also can have as much protein as I want - except for crunchy nut butters, tough meat or meat with gristle and dried beans.  And I have found that tomatoes (in any form - including pizza sauce) are NOT a good thing.  Makes me hungry for mostaccoli just thinking about it!  The purpose of the low fiber diet is that it lessons the irritation to the GI tract and can help it heal.  I will have to stay on this diet through the initial surgery, and then probably through the reversal of the ileostomy I think.  For the time being, I just have to put a little more thought into what I eat and what I cook!

Up To Date

Well I think that brings us up to date - As Carrie told you I did radiation treatment #14 on Friday, April 1 (that was no April Fool's Joke!)  That was the halfway mark!
I have had no terrible side effects from either the radiation or the chemo except for diahrrea - which they told me would be a side effect of both.
The first week that I started radiation & chemo I thought I was superwoman I guess and could do it all - but by that Friday I had found out differently!  I saved up my energy for Saturday when I knew I was going to get a visit from my two favorite little guys - Brody & Brant!!
That weekend we also had the GOTRA Spring Meeting - and I was there to do my Secretary / Treasurer thing for that!
The next week I decided to go home and rest after my radiation treatments at 3:00 on Monday through Thursday - and I felt much better.
This week I have been going back to work after the radiation treatments and that seems to be working well.
(My Friday radiation appt has bounced back between 11:45 a.m. and 8:30 a.m. so I've been working all day on Friday.)
I had decided that maybe I should cut back on going to Chancel Choir - we had started doing some long practices getting ready to do a Cantata on Easter.  I think it was a good call - but I really miss seeing my choir friends on Wednesdays - and singing with them on Sunday mornings.
I have been going to the Lenten Services on Wednesday nights since Ash Wednesday and I went to church for the first time in three weeks last Sunday.  It was great to be there - and the choir's song on Sunday was absolutely beautiful!  I had a lot of comments about how great I looked - and my response was that it was great to be seen!

A Note I Forgot To Tell

In addition to all of the excitement on that Friday when I was at Dr. Z's office once and Dr. H's office twice, in between the visit to Dr. D - when I got back to church all of a sudden my pump started beeping really loudly - saying "high pressure" on the screen.  So I put a call into Dr. H's office - and got the answering service - I told them what was going on and they would have somebody get back with me.  Well, it stopped beeping about as quickly as it started - so I thought maybe whatever it was had taken care of itself . . . Until it started beeping very loudly again with the high pressure message.  I got a call back from Dr. H's office and was told to look for any kinks in the lines - but I couldn't see any - so I was told to look at the plastic clips to see if any of them were closed.  AHA - one of them was, and as soon as I unclipped it - the beeping stopped and the message went away.  By that point I was more than a little frazzled, as was my coworker - so we decided that it was a good time to call it a day.  I went home and crashed in the recliner for the entire evening!

I also forgot to say that the highlight of this whole crazy day was my lunch date with my friends Barb & Deb!!

Thank You's

At this point I really need to say some thank you's.
Have I told you what a great support system I have?
My family has been wonderful through all of this and I love them very much!
I also appreciate the support from our friends, my coworkers and Personnel Committee, our church family and our racing family - the cards, meals, prayers, phone calls, emails, notes and messages on Facebook - they have all meant so much to all of us.
I also have to give high praise to my friends at the Radiation Oncology office and Dr. Z and his staff and also at the Oncology office and Dr. H and his staff - they have been very helpful in all this process and have tried to answer all my questions as best they can.

My Repreive

So I was without my constant companion, my pump from Sunday morning in the ER to Wednesday afternoon when I went to see MY surgeon Dr. L after I got done with radiation treatment #12.  Have I told you how much I like Dr. L?  Besides his great bedside manner - he explains everything fully to you, so usually you don't have any questions by the time he is done.  And once again he came through and explained to me that they create a little pocket for the port to rest in and of course that is where the blood would pool.  Then he told me that when the blood starts to coagulate that it turns into a more gelatin like substance and then is absorbed back into the body.  I told him that I had started taking my fish oil and baby aspirin again - and wondered if that had been a problem - he didn't think so.  He wanted to know when Dr. H would like to hook the pump back up - I told him that they wanted him to tell them.  So they went and called Dr. H's office and the nurse came back in to say that they wanted to hook it back up that afternoon.  I said I was afraid that's what they would want to do.  So I got my "baby" backpack back and started on week 3 of the chemo.  Dr. H's nurse told me that they didn't think that I would have to add any days on to the chemo to make up for the days I was without it because they would want to finish up the radiation and the chemo at the same time.  Carrie had met me at Dr. L's office for moral support, since we had no idea what was going to happen.

Here We Go

Well on Monday, March 14 John and I headed out to the hospital early in the morning to first do a PET scan and then to do a CT scan.  The nice young gentleman who would do the PET scan got first shot at putting in kind of an iv port - that's what they would use to put the tracer into my body.  I say he got first shot, because he couldn't find a vein.  So they brought a nurse out from the hospital (oh I forgot to tell you there is a PET scan trailer that comes to the hospital once a week and parks outside the imaging center) - she got tries number 2 & 3.  When she couldn't get it in, they brought another nurse out - and luckily she got it in on the first try.  At that point I wasn't looking forward to anymore poking, so I had them check to make sure that I didn't need it left in for the CT scan - luckily I didn't.  At some point I had asked if they could use my port, but was told that they didn't like to put the tracer through the port ?!?  The PET scan was for Dr. H.  Anyway we got all done there, and then went to another part of the hospital to get the CT scan - I understand that the CT scan was for Dr. Z and they would use it for some measurements to do the radiation.
On Tuesday, March 15 I had my first radiation treatment, and Dr. Z went through what we were going to do with me again.  Also on that day I started the chemo - Dr. H told me that the PET scan showed the tumor - but also showed the other organs too.  He told me that if the breast cancer had metastisized that it would show up in the liver and my liver looked good.  We then went to "hook up" the pump.  I had a couple of people tell me about some cream that would "deaden" the site at the port (thanks Amy & Kendra for the heads up.)  The nurse told me that the cream was a prescription, but she thought that since we would be taking the needle out and then putting it right back in, it probably wouldn't be necessary.  But she did have some spray that would deaden it.  So we used that - it is very, very cold, but it made me not feel the needle go in at all.  Guess I should back up a little because Dr. H was not sure that we should even use the port to begin with because of all the irritation from the tape.  He told me that maybe we should do a pick line - did I know what that was Miss Cheryl?  I said no I didn't and he said it was an outpatient procedure.  At that point I said NO - that I had been prodded and poked so much the last couple of weeks that I couldn't wrap my head around another outpatient procedure.  And could we try the port and if it didn't work then maybe we could look at Plan B.  He agreed to that.  So the needle went in and the pump was hooked up to be with me 24/7.  It's in a little satchel that I wear over my shoulder.  I had radiation treatments #2, 3 & 4 through that Friday.  The next week I was noticing a little bleeding and so I would go to Dr. H's side to get cleaned up and have the tagaderm changed out intermittently.  I was doing radiation treatment #9 and was on week #2 day 4 of chemo when the bleeding was really bad - so Dr. H looked me over - and he talked to the surgeon's office.  Once again the surgeon that had put it in was not available - so they sent me over to see the other surgeon, Dr. D.  He thought things looked fine, and so I went back to Dr. H's office to get the pump hooked back up.  Dr. D also told me that he would be on call that weekend, so if it started bleeding again, to come to the ER.  So on Sunday morning, Carrie, Justin & I went to the ER.  Dr. D was there, as he was scheduled for some surgery, so he looked things over and decided to take the needle out - and that maybe it needed a few days to heal . . .

Calm Before The Storm

Things were very calm the week of the ultrasound, maybe giving me a chance to take in all the information and things that had happened up to that point.  The next week would go from the calm to the storm.  On that Tuesday I had an appt with Dr. H - and I would get an explanation of the side effects of the chemo and what the pump would look like that I would have.  On Wednesday I would get a call to say that the surgery for my port would be on that Friday - and that I would have an exam in preparation of the surgery that afternoon!  My first thought when I got the call was that John had to work that Friday, so maybe I should try to reschedule.  I told them that I would see if my daughter would be able to take me and drive me home, if not, then I would have to reschedule. I saw the PA that afternoon.  Then on Thursday I had an appt with Dr. Z - and I would get an explanation of the side effects of the radiation treatments and what the plan was.  Friday morning Carrie & I were at the hospital bright and early to get my "vascular access device" or port put in.  When they had to try two times to get the iv into a vein, I was already thinking that maybe this port was going to be a great idea.  Things went well and I was in recovery getting ready for them to send us home when all of a sudden I felt something running down my chest - I looked under the gown and it was blood running down my tummy.  The nurses grabbed some washcloths and cleaned me up as best they could.  Carrie said she was glad that had happened before we left - instead of after we got home!  We were home, including the stop at the pharmacy on the way home by about 11:30 or so.  I started taking my pain pills right away, and things were going along just fine - until I started throwing up at about 11:00 p.m.  I got sick again three times on Saturday - so Carrie called the answering service for the surgeon to see what they thought.  Unfortunately the surgeon that had put it in was not on call - so we got a call back from the other surgeon - and he thought it might be best to go to the ER to have it checked out.  So off to the ER went John, Carrie & I.  By that time we were pretty sure that it was the pain meds that were making me sick, because the vomiting had stopped when I stopped taking them.  This might have been the shortest ER trip in history.  I told them what had happened - and if I could take some tylenol for the pain.  I also had quite a nasty irritation from the tape that they had used to cover the port up after the surgery, so the ER Dr. had suggested we pick up some Benadryl to help with the itching from that.  I had found after my hysterectomy surgery that I have a sensitivity (not sure that it is an allergic reaction) to tape - including paper tape, which is supposed to be the least sensitive.  The rest of the weekend was spent vegging.

Half-way = HOORAY !!!

Ok, so this is Carrie...I know Mom hasn't gotten up-to-date on telling the whole story yet {we've been soooo busy lately...and when it gets all updated, you'll see that!} but I just wanted to take a quick minute to say that today Mom finished her 14th radiation treatment of 28 total which means...{drum roll} she is half-way through the radiation!! 
It seemed pretty newsworthy to report this!!

She is doing pretty good...had a rough weekend last weekend but it seems we've got any of the bumps ironed out now so that is great news! {darkness makes us appreciate the light, right?}I've taken some photos of her to keep you updated that she is still looking very good and I will try to get them uploaded this weekend {have I mentioned how CRAZY our lives have been lately - ha!}

Well, thanks for tuning in and I hope to keep updating with more great news!!