And away we go . . .

My daughter gently (?) reminded me that I really needed to update my blog - so I am.  Let's say that I've been busy! 
The last couple of weeks have been a real roller coaster - even more so than I would have every guessed.  The kids had been helping get the house put back together after our major re-do - so they got the dining room all set up and we have an upstairs guest room that we can even use for a guest room.  Well, little did I know that part of the reason they wanted to get things put back together was that they were planning a major surprise for me.  They had talked with my bff Marlene and she showed up at the pizza party we had planned with the kids and grandkids on Sunday, August 28 - after Carrie & Justin brought her here from the airport.  Well needless to say I was very surprised.  Since we weren't going to be able to meet up at Mt. Pleasant, IA we were going to have to miss our yearly get-together.  That was also the reason that they had persuaded me NOT to start chemo until after Labor Day - although that really didn't take too much persuasion!  Of course no one told me that I needed to take a little time off work cos I was going to have company - so Marlene went with me to work on Monday so I could do paychecks.  Tuesday was Dr. Bill's last Staff Meeting with us, so we had a little party at church - and John & Marlene did some running around - seeing Marlene's old houses on H Street and Irving Street, etc. and chasing after some of the black squirrels in our neighborhood so that Marlene could get a picture of one to take home to show her family.  Carrie joined the three of us for lunch at Gringo's and then the three of us girls made a couple of stops in Fremont before we took off for Omaha to go to Bravada's to check out wigs.  Well that we did, and I found one that the girls thought I looked really good in and that matched the natural color of my hair.  (One of the side effects of the chemo that I took from the pump before was hair thinning, and the texture of my hair has gotten real thin - and since I can't do a perm because of the upcoming chemo - Carrie thought we needed to go check out wigs while I was still feeling good and having Marlene here was just an added bonus.)  I needed to get a prescription for it from the oncologist, and needed to check with the insurance company too.  Wednesday was Dr. Bill's official last day and also John & I's 37th wedding anniversary - and we did a cook out here with our company, and also Pat & Denise came to town to join us too.  I got to meet my new boss, Jon Ashley on Thursday morning - the first time in person cos unfortuately I couldn't be at church the day he candidated - we were still trying to figure out the wafer for the ileostomy bag at that point.  I really like him - he is very calm and laid back!  Thursday we had lunch together at our house with Marlene, Jeff, Carrie, John, me, Pat, Denise, Randy, Brian, Chrissy and Amber (my nephews & nieces) - there's a reason that we were all together, but I'll put that in another post.  Then we had to have Marlene back to the airport by about 4:30 p.m. so that she could catch her 5:45 flight.  Friday I spent the day at work resting up - I must have done one too many trips up to the balcony that day though, cos I had started down the hallway with some paperwork to put in one of the committee boxes and my legs started feeling weird - so I went back and grabbed the first chair I could find.  It went away pretty quickly - I call it "jelly knees" and they show up periodically - sometimes I wake up with them!  On Saturday the 3rd I decided I needed to do some work outside on the rosebushes, so with gloves and pruner in hand, I cleaned them all up.  Sunday John & I went to modern worship - then in the afternoon Jeff took #13 to US30 Speedway to try the new 6 cylinder out, Jill and the boys went with him too.  John took #31 too so Jeff could chase him around the track - and I went too.  Because there were only 4 cars - the 2 GOTRA cars, a late model and a modified, we could park real close to the pit grandstand area.  I helped Jill try to keep an eye on Brody & Brant.  When we got done there, we all went to Pat & Denise's for a cookout - what a good time.  I was tired when we got home, but nothing too bad.  Then on Monday I decided that I really felt good and wanted to see how much energy I had - so I started mowing the lawn.  I didn't mow all of it, but I mowed a big share of it.  Once again I went to work on Tuesday to rest up.  On Wednesday, John and I went to see Dr. B - she had good results from the test I did at Methodist and so we set the date to reverse (or take down I guess in medical terminology) the ileostomy - that will happen in October.  She thought things were coming along very well and was very pleased with how the recup after surgery had gone.  For that surgery I will be in the hospital for 2 or 3 days (not counting the day of surgery) and will spend a couple of weeks recuperating.  During that time, I will not have chemo either.
Speaking of chemo, I saw Dr. H on Monday, September 12 - my son's 35th birthday.  He did an exam and then they sent me off to take some blood and then start the infusion - it takes 2 hours and 15 minutes - we started at 2:00 and got done at 4:15.  (The port worked great - this one has been day & night different from the other one.)  After that was done, they hooked me up to the pump (this is the same chemo that I had before in the pump but I will only wear it for 46 hours instead of 7 days like before).  I went back in on Wednesday afternoon to get the pump taken off.  It was "relearning" what to do with the pump - like to remember to take it with me when I get up in the middle of the night.  I lay the bag on my sewing chest next to the bed at night - otherwise, I have the strap over my shoulder.  It is a lot easier to only wear it for 46 hours as opposed to every day!  The weeks that I am doing the chemo treatments are the weeks that John has Monday off, so that he can go with me (at least for the first few) to see how I tolerate things.  I picked up the RX for the wig on Monday - and after we got done at the oncologist's office John & I went to Omaha to pick up the wig that I had ordered the week before.  Then we went to Fazoli's to eat - my fav Italian restaurant!  By that time I was feeling pretty tired so we headed back home.  On Tuesday I went and got my hair cut - so now I have straight hair - I haven't had straight hair since I got all the long stuff cut off when Jeff was about 2.  So far I have been wearing it like this - don't know when I'll break out the wig.  It is certainly different when I look in the mirror!  I also thought maybe getting it cut a little shorter will help with putting it up under the wig.  Today is Thursday and - knock on wood - so far no side effects from the chemo.  I have been spending a little more time resting this week and going to bed early and a couple of days taking a little rest after lunch.  Yesterday I spent an hour or so on the phone with my cousin Curt from CO - so that was a little extra rest time too.  So . . . I will keep you posted on how the second treatment goes!

The end of August and the first of September

This upcoming week will be a roller coaster I'm afraid.  John & I will celebrate our 37th anniversary on August 31 - it hardly seems possible.  Not too mention that we have known each other for 39 years.  Also on Wednesday we will say goodbye to our Interim Pastor Dr. Bill - he has been with us for 20 months and we have worked very well together.  On Thursday, September 1 we will get our new Senior Pastor - Jon A., who is coming to us from AZ.  The only constant is change, and that seems to be especially true in the church.  There will be some adjustments I'm sure, but we are all anxious to start this new adventure.  Our whole family had been planning a trip over Labor Day to Mt. Pleasant Iowa to meet our friends the Krivi's and their family - but unfortunately because of all this stuff going on with me, we will not be going - I know that I probably couldn't handle the trip, nor would I be able to handle all of the walking, etc., there.  Of course this trip was planned long before any of this came up.  We're looking at making it happen next year.  Brody would like me to come to one of his first soccer games.  Jeff will celebrate a birthday on September 12 and John will celebrate on September 19.  I will have to contact Dr. H to see what we need to do before we start the chemo - which I would like to do on John's short week, so that he can go with me on the days when I have to do the infusion, etc.  Then I'll have to see if I need a driver for the days when I have to go and get the pump unhooked.  I guess I'm still in a little bit of limbo - but once things start I'll have a better idea about how all of this is going to work.  And of course, I will try to keep the blog updated appropriately!

Nurse Carrie & I

Since we had such a difficult time figuring out the wafer, etc. for the ileostomy bag to begin with, I just had to report that we did finally get it figured out.  A different size wafer was ordered through the pharmacy and we began using an Eakin seal (it's a brand name, but much easier to "size" than the adhesive in a tube that we were using before - we're not sure which part was the solution - but since we've been using both, there have been no problems with the bag.  And I have been changing it out on my own, first under the watchful eye of the home health care nurses, and then under Carrie's watchful eye more recently.  It is very helpful to have a set of eyes looking "straight" on when I am putting on the seal and the wafer, as my perspective looking down sometimes doesn't let me see how well things are fitting around the stoma.  I also have to thank Nurse Carrie and Nurse Kathy R. for helping redress where the right port was while it was healing, and also dressing the left port!

My journey just got longer!

In case you missed it in the last post, Dr. H wants me to do 12 treatments (6 months of chemo) - he explained it as a recommendation from NCCN (National Cancer Coalition network or something like that).  So instead of being 3/4 of the way through my journey, now I am only 1/2 way through.  John and I went to see Dr. B on the 27th of July - Dr. H had sent her a letter explaining what the next plan of treatement was . . . and in her usual wonderful bedside manner explained it a whole lot better than Dr. H.  The additional chemo is my "insurance policy" that the cancer won't come back.  Although the tumor was gone when she did the surgery and the path reports had all come back clear, because this was an invasive type of cancer, we certainly didn't want it coming back.  Well, I'll say AMEN to that!  She told me that she thought we should wait until after all the chemo was done before we do the reversal of the ileostomy - I almost cried!  Dr. H had told us that he would give us a "window" in the chemo to do the reversal and then give me a couple of weeks to recuperate.  (The reversal surgery will mean a couple of days in the hospital and then a couple of weeks of recuperation.)  John & I had finished up the appt with her and were waiting back in the inner waiting room when Dr. B came down the hallway and said - let's see how quickly you can get into Methodist to do that test - and then maybe we could do the reversal sooner.  My feeling was that the sooner we do the reversal, the sooner I could go back to a more normal diet (not the low fiber diet I have to be on now with the ileostomy) - which I think would help with dealing with some of the effects of the chemo.   On July 28 I went in for outpatient surgery to have the port on the right side taken out, and then went back to see Dr. L on the 8th of August to have the stitches taken out.  John & I & Carrie went back to see Dr. H on August 1, and that appointment went much better than the previous one.  He had the head nurse go over what the chemo regimen would look like - I will do an infusion in the office for about two hours, along with some anti-nausea meds and a calcium that they have found to make the chemo work better.  After that is done, they will hook me up to a pump that will have the very same chemo that I used before - only this time I will only be hooked up for 46 hours instead of a week.  This will be an every other week thing - on the "off" week I will just go in for labwork so they can keep a handle on white & red blood count, etc.  If I don't tolerate this regimen, then I would do a weekly regimen with a less intense chemo.  On August 10 John & I went to Methodist Hospital to do a test to see if things on the inside were healing.  (I won't gross anybody out by explaining what they did to me.)  The Dr. that took the x-rays and examined them sounded pretty optimistic that things looked good.  Went back for a check-up with Dr. L on the 15th of August - he thought the wound where my port had been was healing very well . . . and we set up the appt to put another port in on the left hand side - for August 19.  That went very well too - it seems like the worst part of both of the last surgeries was finding a good vein in my right arm (since we can't use the left arm for that or for blood pressure).  The last time the anesthesiologist got it in - in the back of my wrist!  I had kind of felt like I had been living in limbo for a few weeks - getting the right port out, letting it heal, putting the left port in, and letting it heal.  (Dr. L & I are wondering if I might be allergic to the prep [can't think of the name right this minute] as I had some itching, etc with this port too, and they didn't use any paper tape, only silk tape.)  Then waiting on the report from Methodist as to whether things are healed well enough that we could do a reversal of the ileostomy.  We go back to see Dr. B on September 7, so I'm hoping that she has good news for me.

Now that I'm home

Well, I came home on Thursday, June 30 - thanks to Carrie.  The reason that John couldn't bring me home was that by the time I got discharged he was already at Junction Motor Speedway, McCool Junction where GOTRA was going to race that night.  I took a pain pill before we left the hospital so that the ride home wouldn't be so long and bumpy - and it really did the trick.  I remembered that I was a little drugged up when we got to the front steps and my legs felt like they were moving on their own when I went up them.  I spent the rest of the night and overnight on the couch - I didn't even hear John come in when he got home.  Friday was spent resting too - although going back and forth to the kitchen and to the bathroom constituted as major exercise.  On Saturday the home health care nurse came to take my temp, my blood pressure and my heart rate - she thought I was pretty boring (believe me that would change).  Saturday night Jeff & Jill & Brody & Brant came to town, in tow with some fireworks for Dad to help Brody with.  He did some snappers, smoke balls, then a boat, a motorcycle and a car.  I went outside to partake in the festivities and after about half an hour had decided that I better get back inside.  So when it got dark and Jeff lit off the fireworks I watched them from inside the house! John, Carrie & Justin and Jeff & Kathy Rehder all went to the races at Harlan, IA where GOTRA was racing.  Sunday and Monday were resting days.  Then we come to Tuesday - the home health care nurse came to change out my ileostomy bag, which she did.  That has been a continuing issue I'm afraid - and that week I had a home health care nurse here every single day!  Thank God for home health care nurses!  Not only did we have ileostomy bag issues to deal with - but I was also dealing with some lightheadedness, that we weren't sure was a blood pressure issue or a blood sugar issue.  The blood sugar issue was checked out and it was good - the blood pressure on the other hand was pretty low - so our task was to make sure that I was getting enough protein, and drinking enough water (5-16 oz bottles a day!)  So that was the regimen we started on.  Unfortunately, Thursday was when this all was happening, and John had to to go US30 Speedway to take care of what he needed to do for GOTRA and I wasn't feeling well, and didn't want to stay home by myself - so my favorite son-in-law Justin came and stayed with me.   Carrie had gone to Minneapolis with a friend to a Brittney Spears concert (with front row seats and a meet and greet with B herself!), but she wasn't planning to be home until later on that night.  Friday was a better day!
The next week went a little better - I was making my main job taking care of me - eating three meals a day, and the protein thing and the water, plus some snacks and also drinking some ensure.  GOTRA went to Albion, NE for the fair races at Boone County Raceway on Monday, July 11. 
This last week has been pretty good too - I am feeling stronger every day.  This week proved to be a real roller coaster for me though - on Monday I went back for a post op checkup with Dr. H with my chauffeur John.  He hit me out of left field with the news that he wanted to do six more months of chemo on me - my reaction was "you're kidding - right".  Unfortunately he was not kidding.  Which led me to my next appointment on Wednesday with Dr. L to look at my port, with my chauffeur Carrie.  His recommendation was that we need to take the port out and then put another one back in.  At this point, I was afraid I wouldn't be up to having surgery to take one port out and put another one back in all at the same time - so we will do it in two separate steps.  So then I had a pre-op physical with Dr. S on Thursday - hadn't seen him since my normal checkup in January (before all of this "stuff" started).  The scale gave me some good news on that day - I have lost 20 pounds since that January visit!  (Although I would not recommend this diet plan to anyone.)  I had an appt set up with Dr. S on the 7th of July - but I cancelled it, which was a good thing the way that week turned out.
On Friday Jeff came to town, not only to help John get the #31 racecar ready to take to Riviera Raceway in Norfolk that night (this has only been abut the second or third time this year that he's had the car out!), but to also help put the dining room back together.  Remember the whole house makeover that we did before my surgery - new carpet in the living room and flip flopping the family room and the dining room around?  Well we did get the living room pretty well put back together (and me working on the bookcases to put things back a little at a time, before and after surgery).  But the dining room was still a major mess - but we put a big dent in putting it back together.  It was nice having a little mother-son time, we don't get to do that very often. 
Then on Saturday Justin threw a 30th birthday party for Carrie - her actual birthday is TODAY!  And I went out and got to spend some time with friends and family.  It turned out to be a lovely night, there was a nice breeze and so it didn't feel as hot as they said it was!  Besides Justin & Carrie of course and John, Jeff & Jill, Brody, Brant (so I got my grandkid fix), Pat & Denise, Breanna, Donovan, Chrissy & Rich, Emylie, Izabell, Richard & Donna, Jake & Rachel, Katie & Ty, Jeff & Kathy - just to name a few.

Surgery and Beyond

Well, they wheeled me off to surgery at approximately 9:15 a.m. on the morning of the 20th - the next thing I remember is seeing a clock (I think it was in recovery) that said 3:10 p.m.  After four hours of surgery and approximately two hours in recovery I ended up in Room 631 bed 2 at Methodist Hospital.  Everyone associated with racing wanted to know how I ended up with a room number with John's car number in it (31) - pure luck is my guess!  Methodist has 2 bed rooms (hence the bed 2) - so I had four roommates during my 10 day stay - let's just say, some were more interesting than others!  The first night there was a high wind warning - and so all of the patients were put out into the hallway because of it - luckily they let me stay in bed and just rolled me out into the hall.  (That was the same night that Fremont had a lot of tree and wind damage.)  John and all of the kids were there during my surgery - John also had Tuesday off work, so he spent both days with me.  My sister Denise came and spent Wednesday & Thursday with me.  On Wednesday they were concerned about some pneumonia - so they took me down for a chest x-ray, they also were concerned about my high heart rate, so I had an EKG done and then wore a heart monitor throughout my stay.  I was having trouble with some nausea too (that was a sign that the organs weren't waking up).  Friday was kind of a bad day - I was still feeling nauseous - they took the catheter out, did a bladder scan, and ended up putting a catheter back in (the bladder was not quite ready to start working on its own yet).  I knew they were going to access my port to put the iv in - that was good timing, as where they had placed the iv in my arm had started to infiltrate.  At this point Dr. B took any sort of food or water away - all I'd really had up to that point was jello and apple juice.  On Sunday, the 26th I had another chest x-ray to see what the pneumonia was doing - there was still a little bit there, and also I was running a fever, so they did some lab work.  (I was on an antibiotic via iv during my whole hospital stay.)  Whenever I had started running a temp, the nurses prompted me to blow into the spirometer and that usually took it right down.  This was my second experience with a spirometer - they sent me home with one after my hysterectomy surgery too.  On Monday, Dr. B wanted me to try some food again - so I worked almost all day on an instant breakfast - then I ordered an Ensure to try.  Well, by that evening I was feeling nauseous again - and had lost all of the instant breakfast and the Ensure.  On Wednesday they took the catheter out and I also had a CT scan (Dr. B wanted to make sure it looked like everything was working like it should be) and yes I had to drink that awful tasting stuff.  For the first time since I'd come into the hospital I could order up some real food - scrambled eggs & toast & apple juice for breakfast and a tuna croissant for lunch - can't remember what I got for supper.  I also got the IV out then.  Each day that I was in the hospital, they wanted me to walk at least three times a day and get up and sit in the chair at least three times a day.  There was a flurry of activity Thursday afternoon - they were planning to discharge me, because they weren't sure that insurance would pay for another day's stay.  So I made a call to Carrie to see if she could come and pick up me - which she did - I took a percocet for the ride home and about 5:45 p.m. we headed for Fremont.  It was great to be home!
Thanks to everyone for the cards, flowers, calls & visits - these people stopped by to see me or called me:  John, Jeff & Jill, Brody & Brant, Carrie & Justin, Dr. Bill, Tracy Kindler, Marianne Simmons, Joy Jensen, Lyle & Ginny Nelson, Denise Miller, Tim & Odetta Wacker, Carol Stohlmann, Joe Gasper, Mollie Brown, Peggy Iverson.

update - still in hospital

this is Carrie yet again...wanted to give a quick update for those who are following along at home.

Mom has had an up and down week with this surgery recovery but overall, things are moving ahead and on the positive side! She looks good and feels pretty good too. She makes her laps around the hallway {at least 3 times a day}and is spending more time sitting up in the chair than laying in the bed...so thats good! Hoping to get out of the hospital early to mid week this week. Thats all I've got for today. :)