The C Word – A New Battle Day 37 - The Lull before…..

As things have begun to settle down and as the “jewelry” start coming off, it is easy to sink into an ordinary routine and not think about the journey ahead. 

George’s external physical issues are beginning to fade.  The wound on the stitch line is very nearly gone, most of the scabbing has already come off.  With the PICC line and drains gone, so too are the signs that anything was there.  With only the Jejunal tube in place, even the use of that is slowing down.  Tonight we have one last dose of Vancomycin to administer there.  After this, the only reason for the tube is night time feedings.  With Dr. Bastidas’ approval we cut back from 750mL to 500mL and will see if George is able to maintain his weight over the next few days.  The cutback in “food” intake also means that the feedings are complete between 2:00AM and 2:30AM.  At that point I can remove the tube, flush it, and George is free to get up whenever he needs to without calling out to me (that time of night also happens to be about the time one or both of us wakes up to use the bathroom so is not an “extra” waking period).  This also means that I can adjourn to the bedroom upstairs and complete my sleeping in our bed. 

With the last dose of meds being administered before going to bed tonight, this means that I get to sleep in tomorrow morning.  No need to get up to administer anything.  Of course, knowing me, I likely will wake up at my usual time!  Go figure!!

No more daytime meds means that we can be out and about during the day without worrying about needing to get home at certain times.  It also means that I can put in additional hours at work without needing to run home in the middle of the day.  It means that George will need to get himself up to get his own mid-morning snack and his make something for lunch.  All things he is capable of doing but for which he normally relies on me to get for him.  However, it is one more step to him being self-sufficient. 

For the coming weeks we will fall into our “new normal” routine with me working out of the home partial days (less than I was before the surgery).  We will have at least one more appointment with Dr. Bastidas when it is time to take out the feeding tube.  Then we should be done with him for the time being.

As George heals and starts to get stronger, it is easy to forget about the next battle which is forthcoming.  On the outside he looks good, he is feeling somewhat better and can measure his progress in his own way. He is leaps and bounds ahead of where he was 5 weeks post-op from the last surgery.  I remember how hard that was and the obstacles we faced – and can say that this time, though with difficult moments, was so much easier than the last time.  I think we both learned lessons on the journey and have been more realistic about what to expect and have been more patient and more tolerable than the first time around.

It is hard to believe that inside there is still cancer growth.  It is also hard to believe that there may not be any really good, viable treatment for it.

We do have an appointment set up with Dr. Sheh on September 12^th.  At that time he will tell us what he has found as far as viable treatment options.  We can then take what he says and do our own research, talk to others who have had similar circumstances, weight the pros and cons and determine what is best for George.  We will be attending a PMP conference in the Monterey area in October and will have the opportunity to talk to others in person and perhaps gain some insight into treatment options.

In the meantime, there will be no exciting news to report.  Life will be moving along at its’ slow pace, both of us still recuperating from an exhausting 6 weeks.  I am amazed at the toll it has taken on me (as I find myself needing AND taking a nap almost every afternoon).  I look forward to the day that the feeding tube can stop and we both can get up whenever we need or want to – and for the day George feels well enough to sleep in bed again.  I don’t think it will be too long now. 

An update on Mom:  Since her hospitalization last Saturday morning she has had bacterial pneumonia and a bladder infection – but with treatment is ready to move to a rehab facility where she can be evaluated and receive some physical therapy.  A decision will be made in mid-September about what type of care she will need moving forward and whether or not she can move back to her apartment in memory care.  The prognosis is that she has six months to three years to live in her condition – though likely will be on the shorter rather than the longer side of things. 

For now, I will stop journaling and pick up again on September 12^th after we’ve met with Dr. Sheh.  Time to spend doing a few other things, catching up on things at home, maybe do some organizing as I hope my energy level starts to pick up once I get some good sleep!  Looking forward to not having any super nursing to do for the time being, that is for sure. 

We are so grateful for all the prayers, for the visits from friends, for the text messages, for the cards and good thoughts we have been receiving these past few weeks.  We hope to get out and about a little bit more now (in short spurts anyway).  For now, in this moment, things are good… and we will appreciate this time that we have.