Endings and beginnings

Roger passed away November 9, 2015.   I just have not been able to write about it here.  It just seems so, so final.  I have not written the thank you notes to everyone who has been so kind with their memorials, cards, help here at the house.   I was and still am completely surrounded by love.  Family, neighbors, friends and even online support groups have shown nothing but kindness and love.

So what prompted me to write tonight?  Spring is nearing.  Crappie season is nearing.  Roger was my fishing buddy.  It changed 5 years ago, about this same time.  When the prostate cancer metastasized, and began spreading throughout his body.  We still fished together for a couple more springs, but I was soon taking on more than I could handle with his health care, here at home and all the ensuing doctor visits, hospital visits and runs to the emergency room (at least 12 ER visits over 5 years, most of them that first year when things started falling apart).  And our fishing together became less, as I encouraged him to find someone else to fish with him.  I needed a break now and then.  And there were many people who filled that role, you know who you are and if I tried to list you all, I would be here too long and I would inevitably forget someone.

And now I miss my fishing buddy.  It is time to put new fishing line on the poles, stock up on jigs, bobber stoppers, and corks.  I see the fishing poles on the garage wall, and I cannot bring myself to think about fishing without my buddy.

I have been moving forward with life and keeping busy,  but now I know spring will always be a little sadder without my buddy.

Update 7/23/2015

After a two month confluence of doctor meetings, I'll update on reports from all the docs.

Oncology (cancer)- no new lesions, lesion on/in bladder has increased slightly (less than centimeters), the Zytiga (chemotherapy drug, pill form, 4 pills=1000mg/night) continues to work after 30 months) normal range of Zytiga is one year. Lesions on spine, sacrun, and bony pelvis remain unchanged.  Every 3 months receives a shot of Lupron (hormones) and every month a shot of Xgeva (bone strengthener)

Pulmonologist (lungs)- only an office check, remains on 24/7 oxygen 2 liters, also using Spiriva, Breo and abuterol inhaler (although Roger feels it does not help)  His lung capacity is down to 30% (as of 2/2015) and no testing has been ordered to see if he has lost any more capacity.  His COPD diagnosis is related to emphysema.  Emphysema does not get better, only worse.  He will always be on oxygen.  He finished 36 sessions of Pulmonary Rehab (7/2015)  to learn to breathe.  It got Roger out of the house.

Cardiologist (heart)-Office visit with doc resulted in an order for a nuclear stress test to assess heart function.  This test is 7/24/2015 (tomorrow, by my estimation)  Roger has had two episodes in the last month which resulted in taking Nitroglycerin, which took care of the chest pain.

Urologist (pee-pee) - office visit to check function of kidneys and urostomy.  Both okay, no kidney stones or anything worth noting.

So, perhaps this will keep everyone informed.
All the medications have different effects, one persistent problem is controlling bowels, one day it is diarrhea,  the next day it is constipation-- this has been the "norm", the battle for 4 years now......
....and he seems "loopier and discombobulated"  more often.

April 2015 updates

Where to begin...
Roger is in Pulmonary Rehab now, learning to breathe and stretching and exercising a bit.  Class is 2 pm Tuesday, Thursday and Friday for the next 11 weeks.  Anyone wanting to transport Roger is welcome to do so...
Pat is having surgery for gall bladder removal on Thursday April 23rd.  A neighbor is taking me and bringing me home.   I will need help around the house for 5 to 7  days, as I will be recovering and cannot lift or do much of anything for those days.
Lots going on as it is crappie season... stop on by, or give Roger a call, he enjoys company any time.
Love to all
Pat

February 2,2015

After tending the woodstove last night, I napped during the day, the afternoon anyway.  Roger has learned to let me sleep. ( I get really, really grumpy and speak loudly at him when I do not get enough sleep.)  Upon waking, Roger starts with the endless list of what I need to do.  And then he says to me "I'm hot, can you come fan me?"  I let out a smirkish laugh.  It sounds as if he thinks he is in Egypt and I am his servant girl.  To which, I suggest that if we are in Egypt, then he must be Marc Anthony and I am Cleopatra, NOT the fan girl.  He laughs a bit and smiles.  There is no further discussion about being fanned.  But it warms both our souls to laugh.
Health wise he is somewhat stable.  Some days he seems to have more trouble breathing, and more phlegm in his lungs.   Appointment with the pulmonologist scheduled for the 17th.
Love to all.

Today in December

Today was a 5 hour visit at the oncologist.  Started with blood draw.  Then a visit with the oncologist.  Oncologist was concerned about Roger in a wheelchair and a fatigue level of 10 (1-10 with 10 being the most fatigued).  So the oncologist ordered a CT scan immediately, which required another blood draw and then an IV insertion.  That's 3 holes in Roger, not a happy pin cushion.  Fortunately only required 4 pokes for all 3.  Nothing particularly different on scan, so oncologist is referring Roger to a pulmonologist.  Roger's breathing continues to worsen, now on oxygen 24/7, is getting breathless just moving from one room to another.  

Extreme sports

Exteme sports seem to be all the rage these days.  Persons wanting to experience that fear, and exhilaration that comes from bungee jumping off bridges, skiing down black diamond ski trails, you know, those shows are all over TV, oh, and internet.  And it got me to thinking...
This past Monday, I made Roger go with me to the Dollar General store over in Praire Creek.  (I love that little store, using backroads, I do not have to drive anywhere near town).  So, thus, it was going for distilled water for the oxygen machine.  When pulling out of the parking lot, Roger suggests we go over to Tony C's and split a beer.  I think I must have stopped breathing for a second there...  So, thus, it was, heading to Tony C's.  Upon sitting down at the bar and ordering a beer to split, a gentleman sitting on the other side of the bar, paid for our beer and ordered us another.  So, thus, it was Roger and I having a beer, two beers, one each.  Sitting there drinking our beer, there is old country music playing on the juke box (or whatever they call those music machines these days, it didn't look like a juke box, but if you are old enough to remember those old juke boxes, you get the gist.)  So, thus, it was, Roger asked me to dance.  and there we were dancing to I don't know what tune.   So thus, it was Roger and Pat dancing in the bar at 2 in the afternoon.
And when I got home, it got me to thinking about that rush of feelings that occur when the unexpected happens.  Was my exhilaration any less than the bungee jumper.  Maybe less fearful, but measured in heart beats and that rush of adrenaline, perhaps not.   Such is the life when you are caregiving.  It is stressful to be sure.  But in those simple moments when something unexpected happens, it is no less worthy of the rush of feeling.  When Phyliss delivers a lemon meringue pie, Ike plows the driveway, Becky delivers lunch, Kittena sends BBQ, Ronny plays poker, Gary shares his testimony, any of the neighbors stop by with this, that or just to talk.  We here are surrounded by wonderful people.  For the moment, these are the exhilarating experiences that bring that rush of feelings, feelings of being loved and cared for...
So, do I miss that rush of travelling down a hill in Nebraska at 45 mph on a bicycle?  Sure, only did that a couple of times, but it IS quite a rush.  
But the rush of love and care are no less extreme!
Love to all!

thursday

It is almost a week since the oncologist visit.  Good appointment-lymph nodes are same, no increased inflammation.  Still continuing with Zytiga and prednisone.  Roger feeling really good.  Breathing still difficult with physical activity, but not worsening.  End of this month will be 9 months not smoking cigarettes.  Uses a "vape" with low nicotine.  Roger is either talking or moving constantly, yes, feeling that good!  Pat exhausted.  Love to all.