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.