Weaker and Weaker

I am watching my very frail husband get weaker and weaker. He told me this morning as he got out of bed that he would not be leaving the bed in a few days.

I am seeing changes to his skin, coloring and his heart seems to beat so rapidly as I hold my head to his chest in a hug. Today was the first day that he was unable to read. The magnifying glass he asked for the other day was of no help. Larry has the TV on for noise but I see that he is not paying much attention to it.

All the crisis situations, all the stress of the last few months, does not compare to what I am feeling now. I am losing him forever. There is nothing I can do to stop this from happening.

I can do as I promised him and make his last days or weeks as comfortable as possible. He is constantly staring off into a distance. He has a look of fear and disbelief.

Larry is talking even less now. I sit next to him holding his hand and hugging him. No more words are needed. It has all been said.

Falling

I have a lot of fears. They enter my mind at the oddest times. They come and go throughout the day. The worst is when these fears visit me in my dreams or during the middle of the night when I find myself awake. All I can do is tell myself that I am safe and that I am doing the best that I can do taking care of my husband.

One of the fears I had spoken to Larry about a few times over the last 2 months is the possibility of his falling. He could not see himself that weak and told me it would never happen. Tonight he found himself more depressed as one more bodily function is failing him.

He fell this evening on the ceramic tile in the bathroom while getting up off the toilet. As I already knew, I was unable to lift him or move him-could not budge him. His fall was before he took his bedtime meds. After all visitors had returned home. After my brother who was staying with us for the past two nights had left. After our son had left for downtown. Just me with him on the floor.

His face showed the panic he was feeling. Since I could not move him, I got down on the floor with him. I rubbed his back and talked to him for about 10 minutes until I could hear his breath become calmer. I then asked him if he felt he could lift himself up with his arms to a chair I brought in. He was able to do that after a lot of difficulty. He sat for another 10 minutes while I again tried to calm him. He finally was able to stand and with his walker made it to his hospital bed.

I still do not know if he hurt himself. He seemed to be able to move ok after. Tomorrow I will know more. He does not want to return to the hospital. I am praying that nothing was broken.

After his meds, our praying together and my reading a bible passage, he asked me what I thought the quickest way was for him to die.

I asked him if he really wanted to know that or was he just reacting to his fall. He told me he was ready to die but did not know how to do it. I stated that his body may not be ready yet even if his mind was. Larry just does not want to linger on in the state he is in.

I had been told by a hospice nurse that if he stopped drinking liquids his body would shut down in about a week. I was not ever going to share that with Larry. I had decided that they could tell him if they wanted and it should not come from me. What a difference a few days make.

It is amazing how my decisions have continued to reverse themselves throughout this experience. When I shared the information with Larry, he cringed. So, did he really want the information? Or was he just reacting to a very bad day. I told him he was not ready for that and never had to make that choice.
I moved his bottle of morphine upstairs.

My heart is broken watching him endure this slow degredation.

Larry is now in Hospice

It took 2 tries but I have found a hospice organization that is very helpful. The nurse came out yesterday. She does live 45 min away but says there is always a nurse on call for emergencies that is closer. She answered all my questions and more. Meds will come from Glenview, not Evanston like I thought.

Today a social worker came out and is putting a bereavement counselor in touch with us. A volunteer will also be in touch to allow me time each week to get a few things done. An aid will also be available to help with cleanliness. A walker, wheelchair, gel pad for the hospital bed and bed table were delivered today.
I remember how efficient hospice was for my parents. It takes a special, caring person to work for hospice.

My first hospice choice did not go well last week. I do acknowledge that the contact person who came to our home may not represent their hospice program. However you would hope that a hospice organization would make sure that their intake person has a suitable personality to make the first contact with a patient.

What a hospice staff person should never do:

-continually sort through her papers and look very disorganized
-not be able to find contact names and numbers
-answer a cell phone call not related to patient they are speaking to
-not be able to explain the difference between palliative care and hospice
-make the statement that "all of our hospice patients are on narcotics even if they are not in pain."
-insist that IV hydrations are not done even if ordered by a Dr.
-ask the patient what he does for a living and then respond negatively by saying "isn't accounting the most boring of all jobs"-especially to an Accounting Professor of 31 years.
   After the last statement was made, I stood up and stated that our meeting was over. When we walked out of the house I told her she was rude and that I could never use their services. I then reported her to the hospice admissions dept.

Nothing, Absolutely Nothing has been easy since Larry's diagnosis!

40 day FAST

It is such a relief to Larry to not be vomiting. After a month of it, he still carries his bucket around because he does not know how to interpret all the upset he feels within his body. The only time he feels a bit better is after a IV hydration. I would give it to him everyday if I could.

I am still struggling with the stomach tube drainage. I now have a routine down but the problem is now mental. He drinks something then a few hours later I drain it out. He eats a pudding or jello and then I see it drain out of him. I feel that every time I drain his stomach I am draining out his nutrition. Why isn't more going down. Why does it seem he still has a blockage and it all just stays in his stomach?

The Dr. did feel that he would get some nutrition but was unsure how much. Larry looks so malnourished. His statement of his starving to death is accurate. It is not just the cancer and it spreading to his organs.
He has not been able to eat for over a month and his body is emaciated.

He has often said that he is on the same 40 day fast as Jesus. However, Jesus survived his fasting.

The Hummingbird Visit

I have tried for years to get hummingbirds to visit my yard and my hummingbird feeder. I even took a wonderful class on hummingbirds. Nothing. Even with my dedication of keeping the nectar fresh last summer, still no hummingbird visits.

I have not seen a hummingbird since my visit to Rocky Mountain National Park, Colorado in 1993. I gave up after last summer. Did not even think of putting the feeder out this year. How mysterious life is.

Yesterday, for the very first time in 14 years, and the first time at my home, a hummingbird came to visit while sitting outside. I was awestruck and it made me feel a happiness I forgot I still had inside.

When Larry and I had our talk this morning, I told him I finally figured out what his sign should be to me after he has crossed over. A hummingbird visit. He looked at me and said "thanks for something easy!" Up to yesterday we could not come up with something meaningful. Had the feather drops, the hawk visit, the butterflies and the wasp. We both said it should be something different.

I believe the hummingbird paid me a visit to tell me that it may be my new animal totem from my hubby.

He sees "the Door"

After spending a lot of time looking around we ordered a new front door 4 months ago. There was a mfg delay and with everything going on I just forgot about it. Rec'd a call and finally the door was installed Friday. The door really looks good. I could not understand why Larry would not get up to look at it. He was the one who had insisted we get one because of the noise the old one made. I knew he felt weak but was very puzzled why he would not give himself the joy of seeing it. The next day he told me, without speaking about our new front door.

Larry is still struggling to talk. Last month it was the hiccups and spasms that kept him from being able to talk. Then if he tried to talk he would vomit. Some days were better than others but talking has been an unexpected issue.  Now he is unable to from the 2 GI procedures. I called his Dr and he said it could take up to 2 weeks. Back to back EGD's is very hard on the throat and esophagus. So he does his best with whispering.

It has now been 4 days since the 2nd EGD. For the first time in a month, no vomiting.  Larry finally has the relief that he/we so desperately wanted. A big thank you to his new GI Dr.

The vomiting has stopped but it is almost as if his body had endured too much over the last month and is unable to rebound. Larry no longer wants to walk or even climb the stairs to a different floor in the house. He tells me he is just too tired and weak. I tell myself that he just needs some nourishment and more time. He just needs more time. I just need more time.

This morning, Saturday, I awake in tears knowing we need to have "the talk" again. It has been obvious to me these last few days. I realize this is going to be a teary day and just allow it to unfold.

I ask Larry how he is really feeling. He tells me that he feels his body is shutting down. I ask him what that feels like. He tells me that his legs no longer want to move and his entire body feels different. He also tells me that he sees "the door" getting closer. I tell him what I have felt for awhile. That there is something very important for him to do and that is why it is getting closer. We both sob together.

Geyser of Stomach Fluid to the ER

As I see Larry changing I find that my anxiety is increasing. What was simple for me is now becoming harder. To me, it is one of the worst things in life to watch someone you love steadily decline from cancer.

I panicked yesterday. With all of Larry's problems with infections, that was the only thought on my mind. Wanting to prevent another infection from occuring. So to the ER we went. I now know it was not necessary. At the time everything happened, I made a decision and acted the only way I know how.

I have given Larry IV hydrations, IV antibiotics, watched him vomiting for over a month and made it through the awful C.Diff. Why am I having such a difficult time with this stomach tube?

Maybe it was because I was not given directions(other than from a booklet) or because I did not know what was under all the bandages. All I know is that my first attempt at draining his stomach was a complete disaster. I was not prepared for the volume or the geyser flow of liquid that came from that thin tube. I had it all over Larry, all over me and all over my bathroom. They had given me a small pint size container to drain the fluid into. How could they not know that I needed a much larger container for the gallon or more of liquid that came pulsing out? To describe this as one big mess is an understatement. All I could think about was that this gunky brown stuff was all over his incision area and I wanted someone to take care of this NOW. I was scared to remove his soaked bandages. So, we changed clothes and drove to the ER.

They took him in immediately, per my request, since the ER waiting room was filled. Now the nurses in the ER thought the situation was funny. I however did not. Have I lost my sense of humor?
Since he was already there, they decided that he needed another IV hydration and they drew blood. They removed all the bandages and to my surprise there was not an incision, only a large tube that had 2 smaller ones connected to it. They then showed me 2 different ways of draining it and how to clean it. Of course they wanted him to stay the night but Larry refused another night in the hospital.

I still was all fingers today when I drained it and found myself still getting the stomach fluids in areas other than the bucket. I am hoping this will get easier and like everything else will just become something that needs to be done a few times a day. Larry of course says to give myself a break, it has only been 2 days.
Sigh, if it just wasn't that dark brown color.

Duodenum Blockages and Feeding Tube-9/11/12

Larry had decided a few months ago that he did not want a feeding tube. He put this in his directives.

Yesterday, prior to his procedure the GI Dr. explained what he thought he might find but was not sure until he got back in. He believed that Larry had more blockages beyond the stent placement of last Friday(why wasn't this found during the original EGD?). He also felt that the organ fluids that are generated from the stomach, liver and pancreas were not being absorbed by the body any longer because of the malnutrition. Normally these fluids go back into our tissues.

He discussed with us that a feeding tube could be inserted into Larry's stomach. Not just for feeding but to drain the accumulated fluid no longer being absorbed by his body. He could also burp the tube whenever he felt nauseous. Larry immediately agreed stating that he would do anything to feel more comfortable and no longer vomit. I asked him twice if he was sure. He said that he was allowed to change his mind. I agreed and told him he can always change his mind whenever he feels the need.

The procedure ended up being 2 hrs long, much longer than the first one. When his Dr came to talk to us he had taken the time to draw a diagram of what he had done. There were 2 additional blockages beyond the original stent. Within just a few days of placement of the original stent there was also tissue in-growth that was squeezing the original stent and causing a small narrowing. He ended up having to reinforce the original stent with another and do the same with the other blockages so that all 5 stents were overlapping. He used a dye to make sure that the remaining portion of the duodenum was clear.

He also discussed that Larry will probably only be able to tolerate liquids for awhile. He said that things could improve so his digestive system may handle some very soft foods like applesauce and mashed potatoes. This hit Larry very hard. The realization that you can never again have solid foods is very difficult. I reminded him that my Sister, Donna tolerated that for a long time and so could he.

The general anesthesia left him with memory issues. When he saw the tube coming out of his stomach he was upset and angry that it was there. I kept reminding him that it was his decision and that he had signed a form agreeing to it before the procedure.

Larry is now on pain meds for the first time. He has never taken them before and loves that he is sleeping and feels ok with no nausea or vomiting. I will read the booklet and figure out how to drain the stomach tube later today. We also have home health care and could call someone out to show me. It is complicated because the home health care is through the original Dr and hospital. I will figure this all out today or tomorrow.

The Trouble With Celery

After Larry's 2nd GI procedure, his Dr. came to talk to us about what was done, the hopefully good news and the problems. He spent a lot of time with us at 7pm and still had one more patient to work on.
At this time I am skipping the details(will post later) to share an underlying story that he was telling that was meant for only me.
I had a wrong picture in my mind of what the metal stent looked like that he had put in Larry to relieve the obstruction last Friday. I thought is was solid metal. He described it in detail as a mesh piece of metal with tiny holes that allows for fluid to pass through it.
He then told Larry that he can no longer eat any fiber. No fruit, no vegetables, especially celery. Stay away from celery. I stated that I always put celery in my chicken soup. Like the kind I made on Sunday that Larry could not keep down. He told me that you can make chicken soup without celery. I told him that I took the time to cut my celery and carrots into very very tiny pieces so it could pass through what I thought was a solid piece of metal stent. He then told me that those very tiny pieces could end up getting caught in the holes of the mesh stent and blocking it. He then changed the subject.
A minute or less later he noticed the horror on my face. He went back to the subject of what Larry cannot eat. He also said while looking at me to remember that Larry had other blockages and if some food had gotten caught in the mesh it would not have mattered, he still would not keep his food down.
After another very lengthy conversation about what new procedures we now had to deal with at home, he ended our talk with remember no fiber, especially no celery.
Larry: He really doesn't like celery. Then a look of fear and just shaking his head.
Larry Kyo: Intrigued with the tubing coming out of his Dads stomach.
Laura: Who had not seen her Dad in 2 weeks was stuck in a box of Kleenex.
Me: Reminding myself that I can and will handle this new change. Then thinking how I could put 1/2 stalks of celery in the soup while cooking it, then just remove it.

Another EGD Endoscopy Tomorrow

Larry's vomiting did not get under control with the stent. He vomited food again last night. Which means that there is another obstruction somewhere in the small bowel. The cat scan had showed the tumor on the outside of the bowel area. Scans/small bowel tests are not showing a true picture.

During the last EGD, he did not go into the small bowel with the camera because it is much more invasive and was hoping the one small stent would keep him from vomiting.

Larry is now scheduled for another EGD endoscopy Tuesday afternoon. The Dr. will make sure the stent has opened fully and go through it into the small bowel and look. At this point, all Larry is asking is for the vomiting to stop.  

Now his legs/feet are swollen and very painful and he is having a difficult time walking. Our home health nurse(from the other hospital) referred me to our Dr.
 Hmmm, which one do I call?  We are now with 2 different hospitals. Do I call his most recent internist or do I call his previous one who has not been kept up to date but is with the practice of the current GI Dr?

Did you know?

Our stomachs can hold up to a gallon of liquid. I was very concerned because Larry was vomiting a large volume of something dark. We found this out last night after I called Larry's new GI Dr. He told me it was not blood but stomach liquid. This Dr is being very considerate and gives me the details I seek. He said that is not usual but when he went in yesterday he had to drain barium from 2 weeks ago and a lot of liquid that was just sitting there. He did not go into the entire stomach and was only in the area of the pylorus obstruction. He did not want to risk running into tumor growth. Larry was told to be patient and give it 48 hrs. So that is what we are doing. So far today has only eaten 1 scrambled egg, 1/2c rice and gatorade.

We are again hoping that everything will settle down and he can keep some food in.

PANCREATIC CANCER GASTRIC OUTLET OBSTRUCTION

I am full of many many emotions right now. The GI Dr from another hospital did find an obstruction where Larry's stomach meets with the small intestine. The tumor has not grown within but is pressing on all his organs. He installed a stent that will hopefully allow him to eat and drink(with limitations) now. All I want is for Larry to regain his spirit and some strength. To feel that he is no longer starving to death as he kept telling me throughout the day.

The next steps will still be his decision. I just do not how I could return to his Dr's and hospital. Yet I will if that is what he decides.

I do not know what to do with the anger I have right now. How could I possibly keep quiet about this. Why didn't they find the obstruction?  9 days in the hospital and I could not get the pancreatic GI Dr to come in for a consult. Why didn't the GI Dr who gave him the endoscopy see it? Experience levels make that much of a difference? Aren't they trained to look for obstructions? What about his Oncologist? He claims that he works mainly with PC patients. Why didn't he know to look for this?

Gastric Outlet Obstruction

Pancreatic cancer is the most common malignancy causing GOO. A common manifestation of end stage pancreatic cancer, gastric outlet obstruction results from a tumor growing into the duodenum. In a 2011 article in the journal "Surgical Endoscopy," Dr. Y.T. Wong notes that gastric outlet obstruction is seen in 15 percent of patients with pancreatic cancer. The preferred treatment for biliary obstruction in pancreatic cancer is endoscopic duodenal stenting.  Most are able to tolerate a liquid diet immediately and go home.

Read more: http://www.livestrong.com/article/172967-end-stages-of-pancreatic-cancer/#ixzz25ou5ZGsI

Another Round of Hope

We left the meeting with Larry's oncologist yesterday with very heavy hearts. He could not explain why this ongoing vomiting was not being contained with the meds. He also did not have any options for what we could do.

I awoke this morning with another idea. A big thank you to whoever is guiding me during this very very difficult time. I called the original GI Dr who had diagnosed Larry with the PC from a different hospital.  His nurse was very responsive. Telling me it was the Dr's day off but she would contact him. An hour later he called our house and had an idea what may be going on. Larry is now scheduled for exploratory surgery Friday morning at 10am. He believes the cancer is causing a minor blockage in the intestine which could be corrected with a stent. He was cautionary that this could end up only being a temporary solution. However, to have the vomiting stop for any length of time would be well worth it.

I am hoping that this will then lead us to stopping all the madness of going in circles at our current hospital/Dr location. I have wanted Larry to move from there and go somewhere else for well over a month. Maybe this will now convince him.

Please pray that this procedure is successful and leads us to the Dr's and hospital that will help Larry extend his life.
Love.

New NCCN 2012 Guidelines for Pancreatic Cancer

Though I found nothing new here, this could be helpful for those who are not living in metro cities or near teaching hospitals.

A patient-friendly version of the new national guidelines for care/treatment for people diagnosed with Pancreatic Cancer were published online today.

NCCN = National Comprehensive Cancer Network

They are written by a group of Pancreatic Cancer expert doctors who gather regularly to keep up with new developments. The guidelines are endorsed by PanCan.

http://www.nccn.com/cancer-guidelines.html

Another All Nighter

Was it the outing this morning to the Gardens? Larry is unable to talk much because he feels it worsens the vomiting issues. Is he thinking too much and causing anxiety for himself? Does it really matter if he waits too long before eating?
This was his longest run of vomiting yet. Twelve hours. From 6pm until 6am. Every 15-30 minutes. Neither of us can understand where it is all coming from. He eats so sparingly.
We will test again today. This time making sure he eats a very small portion every 2 hours to see if it will help. He is scheduled for a hydration and blood work this afternoon. I will also ask for an IV of anti-nausea meds again. He(we) are completely drained and saddened that his body is doing this to him.

THE WATERFALL

I struggle with how much I should share with everyone. Sometimes too much information is not wanted. This was one of those times. I decided I would share this because it gives you an insight as to what we are dealing with. It also lets you know a little more about our relationship and how families can create beautiful memories during the simplest of times.

Larry wanted to visit one of our favorite places, The Chicago Botanical Gardens, on Labor Day morning. He feels his best in early morning but I really did not think it was the best choice. We usually do not go there on holidays because of the crowds. I could not change his mind to somewhere closer, so we went. It never entered my mind that he had an agenda.

We have many special places at the Gardens. One of our long time favorites is the Waterfall Garden. At the very top the pool of water is peaceful. We have had good times, with and without our children, having leaf races. Sometimes our leaves would never reach the first waterfall and just swirl around in the calm water. Many times it would slowly move around the outer edges of the pool before it made its descent. Other times they would go straight to the waterfall and plunge downward. Fun memories.

When we arrived at our spot, Larry told me this is the place that he wants us to put some of his ashes. I did not see this coming. My whole body reacted at first by stiffening with watery eyes. After catching my breath I then realized that this was actually a perfect place. My thoughts wandered to the leaves and our races. They could be a symbolism for life, personalities, even end of life journeys. Yes, it is the perfect place.

Very sick today, Sunday

Another terrible day of vomiting. I know he is getting dehydrated again. Only got a light breakfast down and has been vomiting all day. He does not want to go back to the hospital and I don't blame him. I will have to see if we can get a home health nurse out tomorrow to give him IV fluids.
It is horrible to watch him get so wrenchingly sick.
Why did the vomiting stay under control for 3 days and then back to it again? We are not doing anything different. Why hasn't the meds worked the last 2 days? He cannot even talk he is so nauseated. I am having trouble coping with this and not knowing what to do for him.

Today is Another Day

Larry did not have a good day Saturday. Ate decent but again 4 hours of vomiting in the evening and little sleep.

We of course analyze the day over and over. What was different? Why did he have 3 good days of keeping his food down? Was it what he ate? Too much food? Going 5 hrs from lunch to dinner without any food?
Did going to church the first time in almost 4 months upset him? It was a difficult service for us.

Today, Sunday is another day of trying.

"Breaking Into Chaos With Blessings"

Friday, August 31st. The last day of a very difficult chaotic month. Another month gone.

We had planned a very restful day. A day filled with healing only. No chaos.
God had other plans and I believe a lesson for me.

We had an afternoon apt with friends from The Healing Touch Spiritual Ministry from our church. They were coming to visit and give us both a Healing Touch session. Healing Touch has been a very big part of my life since my own cancer. It is restful, spiritual and renews me. Larry has been open and also very grateful to receive this wonderful experience. A big hug and thank you to Gretchen, Inger and Karen for providing us this respite.

A few hours before our scheduled apt, I had taken our dear doggie, Paji for a very overdue grooming. Shortly after I received an emergency phone call that they had to take Paji to a nearby vet because there had been an accident. The groomer had injured her eye with  scissors and it was bleeding very badly. I told them I would meet them there. This began my afternoon of chaos.

The vet that the store is contracted with was on vacation and they had no one there who could handle this type of injury. So, the store manager, the groomer and I went to Paji's regular vet. 

I was beside myself. Overwhelmed with everything in my chaotic life. Sadness, grief-everything came forward. I wanted to lash out at the groomer. This is when I realized I had a choice on how this would all be handled. Driving the 10 minutes to the vet I somehow found the strength to calm myself.

I realized that I did not want this young girl to lose her job. Yet I wanted her to learn from her mistake so that this would not happen to another pet. When I arrived and took the time to really look at her, she was about my sons age, shaky and covered in Paji's blood. I surprised her with a hug. Then I talked to her about the importance of not being distracted and giving 100% attention to the pet she was grooming. She admitted to me in front of her manager that she was talking to someone else when the accident happened.

Paji  was taken into surgery and luckily it was an injury to the bottom eyelid and not the eyeball. Of course the $600 billing became a problem. They wanted me to pay the bill and they would then reimburse me in 6-8 weeks. After a trip back to the grooming store and a conversation with the corporate office I was then able to get it settled so that it would be between the vet and them.

Since Paji would be there for a few hours I went home to see if I could at least have a shortened HT session.
They stayed longer and gave me a full session. It was a session much needed.

Gretchen handed me a card before she left. The front of the card was titled "Blessings in the chaos"  The back of the card read "Breaking into Chaos with Blessings" by Patricia Livingston.  I walked over to my desk and looked at the 5x7 framed poster I have that reads "Cutting Through Chaos".

I had thankfully recognized how I could change the situation into something positive for myself and the groomer.

Paji is healing. She has to wear a cone around her head during the day so that she does not bother the stitches. She is uncomfortable but coping as we all are.
Her 2 meds are given 4xD on the same scheduled her Daddy takes his meds.

Note: Patricia Livingston  has a book that I ended up ordering titled. "This Blessed Mess".

Benecalorie for Weight Gain

A big thank you to BJ on  http://www.cancercare.org/. She told me about Benecalorie food supplement. It is   a colorless and flavorless liquid with 330 calories and 7 g. of protein. It comes in 1.5 oz that can be mixed in oatmeal or scrambled eggs. However, it is very high fat so we will see if he tolerate it. It would be ideal if he could just drink a few a day. Still not able to drink large liquids at one time, only sips. Boost does not sit well so he has given that up. He did drink a small smoothie I made for him yesterday but felt awful after.  His routine is to eat a small meal and then sit quietly without talking for 30 minutes. Always being nauseous after eating is difficult but better than losing it.

Thanks for everyone's contribution to cooking meals for us. We are going to take a break from your kindness. I now have a freezer full of food that you have made for us. It is hard for me to have a full plate of food when Larry has so little on his. I have been doing more grazing since I feel it has been difficult for him to watch me heartily eat. He even wishes he could eat all my veggies that I have tried for years to get him to switch over to. I am surprised how difficult this has been for him. It is probably because he has never had to diet or give up any foods he liked. Also, he just feels lousy. Lets hope he can tolerate the  Benecalorie and bring in more calories each day.