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.

Thursday August 28, 2014

It has been a while since an update.  Not much going on.  That is until next week.  Tomorrow is a CT scan.  Roger has lymph nodes that started showing swelling in April and the scan from June indicated more swelling.  The option of checking out options or waiting on another scan 6 weeks later was there and Roger chose to wait the 6 weeks and now we are there.  The April scan showed close to 20% increase which indicates the presence of the cancer increasing.  The scan is tomorrow and the doctor visit is next week.  Options to be discussed then.

Update July 23, 2014

Lymph nodes swollen, indicating a progression of the cancer.  Another CT scan in 6 weeks to assess whether to continue the Zytiga (current chemo) or move on to the next drug.  PSA 3.4, no increase there.  Not good news, yet not altogether bad.  It is what it is.  Roger continues to mow the lawn and enjoy the card games with friends.  Stop on by.

April 19, 2014

It is May and a month has passed since the last hospital visit.  Forgetting to update just another thing I've forgotten.  April's ER visit was short, just a night, but a step down for Roger.  Roger is now on oxygen 24 hours, or as much as possible.  It does help him sleep and he does not snore so loud, of course when the cannula comes off, he starts snoring and I wake him up or try to put it back on.  The oxygen is more or less the confirmation of the emphysema worsening.  He is in the last stages of cancer and emphysema both now.  The last stage of cancer began in 2010, and pallative care has brought him this far.  The emphysema can not be controlled any further, it is merely a day by day care situation.   The medicines to help with the breathing -the steroids, and inhalers, and nebulizer, and now oxygen, and quitting smoking in December have brought him this far.  Roger is starting to fall, his sense of balance is really out of whack, he cannot stand in the shower alone to wash his hair, when he closes his eyes, he loses balance.  He has slipped and fallen a couple of times down on the dock and he tries so hard to find an excuse.  (he still can make it out to fish, I try to make sure someone is down there or he has his cell phone).  He has lost a lot of his vanity to the cancer and now the emphysema---does not care any more if someone sees his urostomy bag or he has to tell someone he has to run to the closest bathroom, or other things that happen that would be embarassing to him a year or so ago.  It is hard for me to watch him sometimes.  It is just hard.  I try to make him laugh at least every once in a while, but it gets harder every day.  And it gets more frustrating trying to keep up with all the medications, and cleaning the equipment, every day some thing comes up that should have or could have been done, but I forget.  I just forget...

Oncologist visit

Good day, good visit with oncologist.  Scan shows potentially problematic lymph node or two becoming inflammed, PSA is down from 6 months ago to around 3.  Current cancer medication Zytiga will continue at least until next scan.  If lymph nodes show further inflammation, might change to the next drug in line in protocol.  Roger had Lupron shot (the one that hurts for a week) and Xgevia ( the bone strengthening shot) so will be limping around.  Oncologist says emphysema affecting health more than cancer, emphysema does not get better.   Roger good and mowing lawn!

A caregiver nightmare

One of the worst feelings is finding yourself in a bad situation which you feel you created.  Today I discovered splatters of poop in the bathroom, and a washrag that had been used to clean some of it up.  Roger was just too embarrassed, I am sure, to say anything and I still refer to the hysteric incident of the projectile vomiting incident, which occurred a few months ago.  I have regrets for yelling at Roger when he is vomiting, but that was discussed in a previous post.  And I know, his trying to clean up poop is not solely a product of the incident but as a caregiver you sometimes feel more responsible for the care recipient than you really should.  Anyway, I finished up the poop clean up without any comment.  It is what it is.  Tomorrow, or I should say today, Roger has a CT scan in the morning.  I need to get some sleep and will try to update on Friday when we go to visit with the Oncologist.  Love, grace and peace!

It is the end of March

Well, I must say, I am ready for some spring, even summer at this point.  Ordinarily, I would be all for winter, but it has been or seems to have been a long winter.   Maybe, just maybe, I want Roger out of the house.  I am hoping he goes fishing soon.  The fishing license has been renewed and the lake level (1120) is just right.  Now, if the weather would just cooperate.  It needs to be 70 degrees ambient temperature, no wind, and the lake temperature needs to be around 50 degrees.  Roger has developed very strict criteria for fishing.  He wants to be comfortable.  I understand this, however, there are times when I want to shove the fishing pole and tackle box in his hands and push him out the door.  You see, the first fishing season after I met Roger, he had me out on the pontoon when it was barely above freezing.  I held out, when you are catching crappie, you don't notice the cold so much until the trip home.  Then you start to get cold, really cold.  Well, anyway, I toughed those days out and you know the rest of the story.
   Today was a visit to see Roger's general doctor.  He's had a "cold" of sorts and started coughing.  To avoid the COPD emergency (such as what occurred in December) I thought it best to get him to a doctor.  (Roger likes to see the doctor who has known him for 30+ years, since now Roger can brag about quitting smoking cigarettes, after 30+ years of this doctor ragging on him to quit smoking.)  We return home with a prescription for antibiotics.  I have the same thing going on, but am about over it, and did not have the cough Roger has, and being a sickly sort of child (I was the runt of the litter, so to speak) had enough antibiotics as a child to become rather immune to their restorative effects.  And so, Roger has started a 10 day regimen of amoxicilian. (No, I just don't want to look up the correct spelling and would rather write an entire sentence about looking up the correct spelling, than to actually look it up.)   After the December incident where upon Roger developed a heart flutter from all the coughing, I convinced him it would be best to make an appointment for a regular visit with the doctor rather than risk the 80 mph, 11 mile trip to the ER in the middle of the night.   I get a little antsy with slight irregularities when it comes to Roger's health--something about all those trips down New Hope Road at 80 mph, passing ambulances and all that.
   Roger is not feeling great, still having trouble breathing, gets out of breath easily, but the report is- Roger is doing okay.  He has a CT scan the second week of April.  It has been six months.  The Zytiga and prednisone he is currently on was/is working well enough to have skipped one CT three months ago.  The cancer side of things are going rather smoothly, no increase, no decrease--stable.  
   And that is the way it is-March 27, 2014.
Love to all.

Fire tending February 6, 2014

Here I am again, 2 am this time.  I am tending the fire tonight, low of 4 or so.  It is cold out, Shasta is in the laundry room.  Shasta and Roger are both sleeping.  I have Turner Classic Movies on the TV, love old movies.  Tho I don't pay much attention to the TV.  It is quiet in the house.  It is good.  Have cleaned up most of the kitchen with Caldera- lemon, sea salt, neroli cleaner.  It is good.  It smells wonderful.  I love cleaning without interruptions.  Although, I do have to keep it quiet, so as not to wake either of the sleeping giants (Roger and Shasta in case you did not catch that.)   Lot of thoughts go through my mind, but alas, when I finally get to put words down, they allude me.  If you have not tried Caldera cleaning products, you should.  They are VERY expensive, but I found some at Dollar Saver in Rogers, at 1/2 cost and another 20% off some time ago.  $8 for a quart of concentrate.  Makes about 64 gallons, lasts a long while.  Good stuff.
Roger is starting to have problems breathing again.  Gets out of breath easily, tried to load the wood in our indoor cart and had to take a break getting it loaded.  Feels bad about me having to do so much around the house.  He does not like being dependent on anyone much less being dependent on a woman.  He has not had a cigarette since the hospital stay in December.  He is using his e-cigarette tho comments about how he would like a Salem cigarette.  The statement from the doctor about drowning in his own juices, really made an impact on Roger.  He is good about taking his breathing treatments and I try to keep tabs on his meds, between the two of us, he rarely misses any doses of all the things he is taking.  He is a good example of staying alive with modern medicine.  Each time he has had prostate cancer issues, there is a new treatment to try and there are more in the works.  The prostate cancer is the least of his problems now.  It is what it is.
Don't know what tomorrow will bring, just day to day matters.
God's grace is with us.
Love to all.

Early Sunday 1 am

Pat is up tending the fire tonight.  We keep the woodstove going on nights when it gets below 32 F.  The heat pump relies on electric strips to heat below 32, greatly increasing the electric bill.  The man who sold us the unit has the same unit with no other source of heat and his electric bill was over 400 one month this winter (our house is about the same size as his and our electric bill runs around 140 and even with the cost of wood, it is far from 400.  It has been a winter with some really cold nights.
So, I am here at 1 am tending the fire.  I like the wood heat, it takes the chill out of your bones.  True, it is very drying for your body, just drink lots of water and use a good lotion.
There are days, here at home, when I wonder what I am doing.  I find it hard to keep up with anything, much less everything.  Some days I am worse at taking my meds than Roger is at taking his, simply because I am more adept at taking care of him than I am myself.  It has come to my attention though other caregivers, family, friends, and my doctor.  At least I am still at the point of only having to deal with one doctor, I would prefer to keep it that way.  Roger has 6 on the present roster,4 other doctors are in his background, having been replaced or out of their care for one reason or another.  And each of those doctors has his/her set of drugs- for cancer, heart, lungs, sleep, and aches and pains that occur with each of those and the interactions of those.  It is confusing and to add to the pile, there is the dealing with health insurance, medicare (for Roger) and prescription coverage.
Roger received a letter from medicare stating his current sleeping medication was not on the formulary list.  I call the number on the letter to find out what I need to do.  The first person takes the info, then transfers me to another person "a dedicated team member for AT&T", who then suggests 2 other drugs for Roger to take.  I then call the oncologist, who is currently prescribing the sleeping meds, and talk with the phone nurse about the situation and she calls in a prescription for one of the new drugs.  I have to call 2 different pharmacies to find the prescription and I find it and go pick it up.  And a couple of days later, Roger gets another letter.  The new drug is not on the formulary.  I call back the number on the letter, talk with the first person, who transfer me to the second person.  This time the second person tells me the AT&T coverage pays for the drug and even tho medicare does not, it will still be available for Roger, and so will the drug he was taking previously.  I think to myself about the hours on the phone, the drive to town to pick up the new drug and more hours on the phone,  well, I just don't know what to think...
And now since I am getting bleary eyed, I bid adieu.  The fire needs tending.

Update from October 2013-present (January 2014)

On December 26, 2013, while Roger's son Kyle was here, Roger was having trouble breathing, really raspy and sleeping most of 2 days.  After a couple of calls to United Healthcare nurse and Oncology nurse, Kyle drove us to the ER.  Oxygen was really low and he was admitted.  Treated for COPD and a respiratory infection.  Roger was at the hospital for 3 days or maybe 4 (don't really remember).   This hospital visit resulted in Roger laying down his Salem cigarettes.  He has taken up vaping, the e-cigarette thingys and he has not lit up a cigarette since those 3 cigarettes he smoked when I had to go to town to get a new e-cigarette.  (the first e-cigarette did not last very long)l  During the time Roger was in the hospital and for two weeks after discharge, he was on a high dose of predisone, resulting in quite an increase in his energy level, both physically and mentally.  If you did not receive a call or visit with him during this time, I am sorry you missed it.   He remains to this day very jittery and restless, the result of all the steroids he is taking in breathing treatments- nebulizer, advair and inhaler.  Cancer remains in check, nothing new, but emphyzema continues continues to be bothersome.  He does not yet have oxygen at home, that would be the next step, as he is once again having troubles breathing even with all the drugs.   Please visit or call, it is a delightful distraction for him and a chance for me to breathe.   Love to all.

Friday October 25,2013

Friday-appointment with oncologist
discussed bloating in abdomen, doc looks at scan, Roger might
and be a bit blocked
Roger will be taking 10 doses of miralax each day for 3 days
that is 30 doses of Miralax.
Rest of news is great, PSA remains at 2.6 and cancer is stable.

Saturday-Day one of Bowel Performance
After the 5th dose today, Roger begins to complain.
I tell him, I could just give him a "bomb" and call it a day.
A "bomb" is 6 oz of prune juice, heated, and 2 tablespoons of Milk of Magnesia.
Roger says no, he loves me and he will behave.
He does not like the hot prune flavored chalk.
I feel like I have a new lease on life with this new threat.

Will update, I suppose I do not need to tell you where Roger is at this time.  It should be apparent.

Love to all!

Saturday October 5, 2013

About 4 weeks ago, Roger was getting short of breath easily, just getting up to move to another room had him out of breath, and after only a small plate of food.  His abdomen looks like it will bust, whether you call it swollen or distended or what.  So, I call the oncologist to see if they have suggestions for what to do.  Mainly, whether I should schedule him to come in to the clinic earlier than his end of October scheduled visit, or check with his primary doctor, or perhaps the cardiologist.  Roger ended up at the cardiologist for a couple of different test, to check for heart problems that might be causing the problem.  Since we did not received any news after the 2nd test, and the NP said they would call if something showed up, we assume his heart is okay.  So I call back to the oncologist this week and they suggest coming in to see the NP there. and we do.  and they take blood and do the blood magic thing to see if any anomalies show up. and no. and Roger's CT scan is moved up to Friday 4th  (he was scheduled for his regular 3 month scan on the 26th).  and they take more blood on Friday, and do the IV for the scan.  (Roger feels like a pin cushion, and his arms look like years of shooting up drugs.)  at 11 am and we received a call back at 3 pm.  nothing new shows up, no fluid build up, no new lesions, suggestion that it is gas, but the oncologist will review the scan and we should get a call back.  So, we wait.  Have given and giving Roger natural remedies (charo tabs and pro-biotics) to try to help in case it is gas.

September 25, 2013

Worsening lower back pain, taking hydrocodone on a regular basis for a couple of days.  Heating pad helping.    No news on the echo cardiogram.

September 11, 2013

Visit today with Cardiologist to check on shortness of breath, met with NP, had EKG and scheduled an Electrocardiogram for tomorrow.  Visit today to rule out heart problems causing shortness of breath.  Quick visit, not a lot of waiting time.  Roger not happy about having to return tomorrow, but has accepted the situation because wife insists on keeping him around.