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. :)

surgery is done for today

this is Carrie: Mom's surgery went well today. THE CANCER IS GONE!! [cheering] The surgery took about 4 hours and she is in anesthesia waiting for about another hour or so. I'll update when I know more information and such...otherwise, Mom will be back on here before we know it! :)

June

June has been very busy!
On the 1st I went to the choir potluck at Woodcliff.  That was fun, since I hadn't seen some of my choir friends since I quit doing choir way back in March!
The 2nd was GOTRA racing at US30 Speedway in Columbus - I opted to stay home . . .
. . . so that I could be up for the Family Reunion on the 3rd & 4th here in Fremont.  We met at the church on Friday night for supper and visiting and then the Airboat Club on Saturday for lunch, visiting, some photo ops, hayrack rides, dinner, etc.  What a great time - the weather cooperated perfectly - and it was great to see all those cousins from NE, CO, AR, MI, MO, etc.  (I hope I didn't miss any states.)  Then some of us even met for lunch on Sunday, which was a great time too!  Thanks to John, Denise, Jeff & Jill, Carrie & Justin and Pat for all the help for the weekend!  Couldn't have done it without you.
On the 6th John started pulling up carpet - and had help moving furniture into the dining room - Carrie painted the two walls on the 7th in anticipation of the new carpet.
Friday, we got the new carpeting put down during the day - and then went out that night to celebrate Justin's birthday!
The 11th & 12th we moved furniture back into the living room and bought new furniture.  Things are slowly all getting put back where they are going to be.  Thanks to Carrie & Justin for helping move "out" & then back "in".
John, Jeff, Carrie, Uncle Richard and cousins Lloyd & Holly all went on the Great Nebraska Tractor Ride on the 18th & 19th.
Saturday, my good friend Dottie and I went to lunch - and ended up spending three hours eating and yakking.  Please keep Bob & Dottie in your prayers, as they are currently relocated because of the flood.
And today - Happy Father's Day to all the dads out there - especially to the father of my children, my wonderful husband John, and to the father of my grandchildren, my wonderful son Jeff.

May

This has been a busy month - as May always is!  I've already told you about some lunch and dinner dates and also my Dr. appointments.
On the 13th we had a graduation open house to attend for a couple of special girls - then we met our friends Bob & Dottie F. at the Longbranch in Leshara for supper!  Dottie surprised me with my birthday present - some beautiful earrings.
On the 14th we went to one of Brody's soccer game.- the other team only had four players, so Brody's coach was asking if any of the kids would like to play for the other team "just today" so they could play 5 on 5 - he'd asked some of the kids and Brody was raising his hand - the coach asked if he wanted to play for the other team and he said YES!  Of course it was a little confusing because he was used to getting the ball to the one goal - and now he had to get it to the other one.  But they were all having a good time running around.  Toward the end of the game they were at Brody's team's goal and he tripped and one of the kids got him in the nose with the side of his shoe - so he had to be taken out of the rest of the game so we could get the bleeding to stop.  But at the end of the game - he not only got treats from his team - he got treats from the other team too!  He told them thank you of course.  Then it was cute as he went to tell the little boy he'd had the collision with "that it was all right!"
On the 15th we were supposed to race at I80 but got cancelled because of the weather - turned out to be a pretty nice evening and I got some flowers planted.
The 18th was a bad day for me - not sure exactly why - but I just couldn't navigate getting out of bed that morning, so I stayed home in the a.m. and went in for the afternoon.  I haven't had to miss much work due to my health - thankfully!
On the 20th I went in and had my port irrigated - have to do that once a month.
On the 21st we celebrated Brody's 4th birthday - but instead of going to the lakes with the threatening weather forecast (funnel clouds were spotted by North Bend and the State Lakes on that day) - everybody went fishing at Lake Cunningham instead.  Even Papa Ferguson who is not much of a fisherman was catching his share of fish - and then letting Brody reel them in for him!  (It was all catch & return fishing.)  I stayed back at Jeff & Jill's with Brant - and the two of us had our own fun playing and napping!  Then when everybody came back to the house we had supper and cake and the birthday boy opened up his presents.  The theme was "John Deere" and Jill had even made him a John Deere tractor cake.  (Jeff has a John Deere tractor - Papa Ferguson has an IH Farmall (red) - and Aunt Carrie has an Allis Chalmers (orange).)
Our rain out at I80 was rescheduled to the 22nd, so I was planning to try going along for the evening - John talked me out of it, which was a good thing, cos I wouldn't have been able to make it!  I also wasn't up to attending the two graduation open houses that we were invited to that evening.
On the 25th I celebrated my birthday - with all of my family!  Had a wonderful pizza dinner and got some pretty flowers!  John got me a gazebo.
On the 27th I had lunch with some good friends from high school - Kathy R., Jody P. and Pam K. - what a good time we had reminiscing!  Also got to meet Dr. G who delivered both of my grandsons - it's a small world - my friend Kathy R. used to babysit for Dr. G!  John & #31 and Justin & Carrie & #45 went to Junction Motor Speedway in McCool Junction, NE that night racing - I stayed home.  John said they drove in rain all the way until about ten miles from the track - and then even got to see the sun!
I had done some weeding in the flower beds on the front and the side of the house - and John had put down new mulch.  I wanted to do something different with the bed in the southeast corner of the house, so we put a shepherd's hook in the corner and placed our "GOTRA" rock and our "Gone Racin'" rock there, then we went shopping for some hanging plants to put on the shepherd's hook.  It has a nice fresh look to it!
On the 29th we were supposed to go racing at Raceway Park in Jefferson, SD - but got cancelled because of the rain.  So instead we watched the grandsons for awhile - then did some carpet and paint shopping - I'll tell you more about that later.  We brought Brody back home with us to stay the night and watched Gnomeo & Juliet - Papa & Brody started watching Rango, but didn't get very far . . . and I'm not sure who fell asleep first - the old guy or the young guy!
On the 30th we took flowers around to the cemeteries - stopped to visit our friends Desi & Steve R. - then came home and John bbq'd for supper!
The 31st was a very nice day (translate that as it was nice enough to put the top down on the convertible) - and I felt like I still had some energy when I got home from work, so I pulled some weeds, John helped me get the plants I bring in for the winter back outside - and I even repotted a couple of things.  I cooked supper - and the burgers were pretty good if I do say so myself.  I even got the refrigerator cleaned out while I was cooking.  I really like four day weekends - they just don't come often enough.