Autumn Leaves

Many of you requested my daughter, Laura's reading at her Dad's Memorial Service:

AUTUMN LEAVES BY JOE MAZZELLA

Seeing all of the beauty and color of these wonderful Autumn Leaves has made me decide to do something that I haven't done in a few years. I am going to jump in a pile of Autumn Leaves again. I am going to dance in them and hear them crunch under my feet. I am going to lay down in them and feel them brush up against my face. I am going to smell them and let them invigorate my being. I am going to play in them with both the heart of a child and the appreciation of an adult. I am going to enjoy these glorious gifts from God with all my heart, all my soul, and all my mind.

  It doesn't matter if you are eight, forty or eight four, it is never too late to enjoy a beautiful Autumn. It is never too late to play in the leaves. It is never too late to laugh like a child. It is never too late to gaze with wonder and awe at the beautiful world that we have been blessed to live in. It is never too late to fully live your life.

  May you live your own life as beautifully and wonderfully as a forest full of Autumn Leaves. May you share the color of your heart and light of your soul with everyone you meet. May you bless this whole world with your kindness, goodness and oneness with God. May you live a life of such giving, sharing and caring that even after you pass from this world what you did and who you were, will continue to nourish the hearts and souls of those still here. May you live in love and joy today, tomorrow and forever and may you always remember to jump in the leaves.  

Loyola Memorial

Thank you Agatha! I knew I would not get downtown and wanted a picture.

Remembering Professor Metzger

Online Obituary

The Cremation Society of Illinois has posted Larry's obituary. Scroll down the page until you see his picture.

http://www.cremation-society.com/_mgxroot/page_10893.php

Thank you to everyone for all of your kind words and support. Our family is breathing in all the love to help us with our sadness and grief. 

Melody Metzger

Memorial Service

A Memorial Service will be held for Lawrence M. Metzger on October 20th, 2012 at Our Saviour’s Lutheran Church, 1234 N. Arlington Heights Rd., Arlington Heights.

Greetings will be from 10 to 10:50am. The service begins at 11.

Immediately following, you are invited to a luncheon in the church Fellowship Hall and then to the Metzger home in Mount Prospect  for dessert and drinks as we continue to celebrate Larry’s life. 

In lieu of flowers or gifts, donations may be made to Loyola University Chicago, either The Lawrence Metzger Award for Excellence, a monetary award for Business students, or The Accounting Department Gift Account, for scholarships.

LARRY'S JOURNEY HAS ENDED-October 1, 2012

My Dear Husband, Larry, took his last breath at 1:45 am this morning with his family holding his hands, talking to him and hugging him. He crossed over peacefully, just like he lived his life. 

A big thank you to everyone who has been reading and praying for us along this tragic journey.

I am forever changed both good and bad because of this experience. Yet I am the luckiest gal on this planet. He picked me to go along for the ride. 

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.

Diet is so limited

Yesterday was Larry's first day keeping food down. Only eating very small amounts. Saw a posting of how important it is to take his meds at least 30 min before eating so it coats his inside. They did not have that instruction on the script. He was taking it just before he ate. What a difference. Those little details matter.

He had 1 c of oatmeal for breakfast. Lunch was a cup of chicken soup with 1/2 pc white bread. Dinner was 1/2 grilled cheese with no butter, only used pam, and 1/2 c cooked applesauce. 30 min after bedtime meds he had 1/2 soft cereal bar. Only seems to be able to tolerate non fiber foods. White bread, only white rice-all the stuff they tell cancer patients to stay away from. Anything with fat and he is unable to digest it. Larry  again is not drinking anything. I need to get it set up so that I can get him IV fluids at home. He went in for another blood test today. They are watching his levels closely.

Larry looks so much better today. It is amazing how well he does look after what he's endured. He is talking more. Talking has been very stressful on his GI tract. Made him very nauseous. His mental state also seems better.  If he can have a few days of keeping his food in him things should improve more.

We were told last week that the cancer had spread to the peritoneum. That is the membrane that surrounds the internal organs. At this time Larry is scheduled for another chemo treatment next Wednesday. Oncology nurse called yesterday and said the Dr wanted to talk to us first. We are wondering if he is going to tell us that it is too late for the chemo to help. Do oncology Dr's ever do that? Or do they push for you to keep going. Two chemo treatments spaced 5 weeks apart had no effect on the cancer. Can his body handle another treatment?
  

What is Gastroparesis

Larry vomited 5 hrs last night. He is so strong to be tolerating this. His body is enduring a lot right now. It is very difficult to watch him struggle with trying to eat but not able to keep it. 

I went online to my PC support group sites. A nurse from the John Hopkins site sent me a message asking why he was not checked for gastroparesis. There is a test called gastric emptying that can be done. I was told this vomiting is not typical for PC.

I had never heard of this. A call has been put in to his GI Dr and Internist.

Does anyone have any experience with this? I can read about it online but discussing this with someone who knows of it is more valuable. He is already taking Reglan medication. Thanks Everyone.

No Nutrition for 2 weeks

Larry is having a terrible time eating. Breakfast of oatmeal or eggs is ok. Lunch is harder. By dinner nothing is good. Starts out feeling ok when he awakens then it is a downward spiral to bedtime. 
Has lost the little he ate the last 2 days. The Reglan med was suppose to help with the nausea/vomiting. I am not sure who to even call anymore. 

The Visiting Professor Goes Home!

Larry is finally home! Our goal is to keep from having to return to the hospital. He was saying that it is never good when the nurses recognize him and say hello by name. He is now known as the visiting Professor on the 3rd and 4th floor.

Still is nauseous but kept his food down yesterday and today. His list of meds has lengthened. Larry feels that Reglan has helped him most. However it has terrible side effects and cannot be used for more than 3 months. http://www.fda.gov/downloads/Drugs/DrugSafety/UCM176362.pdf

We are both looking forward to a quiet week. No Dr's, no decision making, no chaos-just rest and walks.

Our Anniversary, August 25th

I awoke this morning with tears and sadness that Larry was not by my side. Thinking of 3 years ago when we spent most of our 25th with me in the hospital. Tears of knowing that this will probably be our last celebration. As my thoughts progressed, I found myself thanking God that we are be given this time together to celebrate our 28th Anniversary.

There will be no long weekend away that we had planned. There will be no champagne toast or eating of good foods. However, there will be Hugs, Kisses and Holding Hands. I will put a Do Not Disturb sign on the hospital door. We will light our Wedding Candle and repeat our Vows as we have done for 28 years in a row. We have been blessed to have had 28 years together as a married couple.

GI Clear

Larry's entire GI system is clear. All tests show no blockages of any kind.
Today he will again go back to trying to eat something liquid. Tomorrow more solid.
I have talked to the Oncologist, GI Dr, Hospitalist and a Palliative Care Dr. To each I said that they need to talk together and come up with a plan to go home with. Larry went into the ER with spasms and pain. They do not have a definitive reason for it. I am hoping they come up with a plan of meds so that he can eat without the spasms/pain taking hold. Palliative care has ordered a hospital bed for the house in hope that he can sleep better. He needs to sleep in an upright position.

Today he felt better and tolerated the GI Bariums he had to drink for the 5 hour test. Yeah, it seems his vomiting has ceased! Now if he can start eating without those spasms/pain occurring things will be much better. He was talking this morning about doing another chemo treatment next week. He very much wants the chemo to start working against the cancer.

Trying to keep moderate during all these ups and downs is very challenging. Every day brings something different. I am very very thankful for today. 

Bravery

I had received an email from a friend(Thanks Holly) about how brave she feels I am. Yet I do not feel that way. Not after seeing what Larry is enduring.

Larry is by far the bravest, kindest, loving person I have ever known. Even in the middle of all this, he continually is still thinking of the kids and I.

He found out at 5am this morning that he would be having the small bowel testing. They would be taking him to radiology around 8. He stayed awake so that he could wait until 7am to call me about it. He did not want to wake me up. With tears in my eyes I hugged him and thanked him. How do I get him to put himself first?

Day of Spasms/Pain

I reread my last post and realized that I was hoping it was the C. Diff causing Larry his problems. I guess that tells you where we are at this point.

He was able to keep down about 1/4 cup of cream of wheat and 1/4 cup of broth as of this posting. They may or may not set him up with this nutritional IV called TPN, toal parenteral nutrition. I was told it has numerous side effects. They will have to give him another vein catheter to use since he still needs his port open.

They may or may not do a lower bowel test tomorrow. His Oncologist feels it is a waste of money. The GI Dr says that the cat scan does not always show everything(the Oncologist did agree)  Larry seems to want the test feeling he has a bowel obstruction. However, he is still going everyday so there probably is no obstruction .

Since eating even a small amount he has been in a lot of pain with those horrible spasms. They are worse now, vibrating more of his body. The morphine is a low dose and does help much. Nothing he has been given has taken the spasms or pain away.

He had a very difficult time even talking today. Seemed to make the spasms worse and brought back those hiccups. Had the hiccups for 4 hrs straight.

The only time he seems to look good and feel better is after he receives a steroid injection.
Things keep changing, this is what today brought.

Cancer or C. Diff Leftovers?

Larry's endoscopy showed some inflammation in his esophagus but no reason as to why he cannot keep food or drink down. After the procedure and when I left the hospital very late last night he was miserable. His stomach spasms are back and he is very anxious. It has now been 8 days since he had any food or drink. We are very worried that the pancreatic cancer is causing his problems. Looks like I will again have to ask about additional testing without someone deciding that it should be done. We have not had any Dr. explain what is next. Tomorrow I am contacting each Dr personally. I am also going to set up an appt. with someone in hospital administration about the lack of coordination, communication, poor decision making, poor response and why we are still in the dark after the 5th day of hospitalization.

Could his colon be messed up from the C. Diff? I was not able to find any information on spasm or vomiting with C. Diff. Larry had one negative stool culture C. Diff test. When I asked about false negatives, the answer was very vague. Again per the web, not the Dr's, I find that 3 negative stool tests is the best proof that it is under control. False negatives occur when specimens are not promptly tested or kept refrigerated until testing can be done.Clostridium difficile toxin is very unstable. The toxin degrades at room temperature and may be undetectable within 2 hours after collection of a stool specimen. Molecular tests: FDA-approved PCR assays, which test for the gene encoding toxin B, are highly sensitive and specific for the presence of a toxin-producing Clostridium difficile organism. http://www.cdc.gov/hai/organisms/cdiff/cdiff_faqs_hcp.html

Endoscopy Tomorrow

Larry is scheduled for an endoscopy tomorrow afternoon. Finally, a GI Dr came to visit him. Only took them 3 days to finally contact someone. He visited Larry today and Yep-another opinion. He does not think it is the liver tumor causing his pain/spasms. He feels the type of problems with not being able to keep down food or water is more likely coming from the stomach. Hopefully tomorrow we will know more after the procedure. He was switched back to the morphine because he didn't get any relief from the dilaudid.

Tomorrow the oncology Dr will also be in. I don't know what he is going to say at this point. He may convince Larry to keep at the chemo-I don't know. I am not giving an opinion about this one, Larry needs to make the decision himself. None of this is easy.

I woke up this morning feeling like a cold is coming on-the LAST thing I need right now. Took all my supplements and feeling better now, hoping I caught it in time.
I also went to see my palliative care Dr. My Post Mast Pain Syndrome from 2 yrs ago has occurred again. She is hoping it is from a different pain receptor than the original because of the fibromyalgia. She explained how our bodies have memories of what occured during high stress times and will often go back to that. They have actually studied pain receptors and how they will soften, relax and you get relief. If you end up returning to a similar high stress situation the receptors can go back to the way they were. If only I could put in place everything that helped me to get out of that cycle of pain.

More Depressing News

After another day of the Hospitalist, Infectious Disease Dr and Oncologist all having a different opinion we are left with confusion and depression.

Latest scan shows a brand new 3X2 cm high probably of cancer on Larry's liver. The oncologist ordered a stronger dose of steroids. The hospitalist previously told us she thought it might be the steroid he was given with chemo that caused his spasms. ??

He still cannot keep anything down. Could not even tolerate liquids today.  I believe they want to first try one more time with liquids in the morning. If again he cannot keep it down, most likely they will be giving him a nutritional IV tomorrow. ??

Latest scan showed C.Diff stranding in his colon. Yet his culture came back negative. So now they are saying he no longer has C.Diff. We want to believe this is true. ??

Larry's spasms are gone but the pain is not being relieved. They have switched him to dilaudid injections. The location of the pain is mid lower chest area. Oncologist feels it is referred pain from the new liver tumor. Hospitalist previously told us it was reflux/GI distress. I had asked for a GI Dr consult this morning.
This evening inquired about it only to find out it had not been processed. Tomorrow I will call myself.

Larry asked me to inquire about home hospice.

3rd Trip to the Hospital

Larry never got his shower. By 1am this morning, Larry had enough of the hiccup spasms and vomiting, back to the ER we went. Their protocol for hiccups is to relax the body, yet nothing helped. 1:30am a shot of activan. 2:30am a shot of valium. 4am a shot of morphine. His body was completely relaxed except for his stomach area. Spasms and vomiting persisted. These spasms are awful and very painful. They actually seemed to get worse with the relaxation. They took him for a cat scan at 5am. Prior he had to drink a contrast solution. I am not sure how much actually stayed in him.

The cat scan results were verbal between the radiologist and ER Dr. His colon is in bad shape from the C.Diff. They called it a pseudomembranous inflammation of the colon. There was no evidence that the vancomycin had helped. They gave him a flagyl IV which actually has less response in helping get in under control in the research done. He has been on probiotics also, which have not helped so far. Could be due to his vomiting. I could not get a copy of the cat scan to see the pancreas results since they did not have it printed yet. It is Sunday and we will have to wait until tomorrow for the specialists.

I questioned 4 nurses and the Dr as to why they do not wear gloves in the ER. They have boxes of them on the wall. The only time they were put on was when they had to access his port. Blood cultures taken in each arm, IV fluids, shots into his port line, handling his vomit bag-NO GLOVES. I was told it was not necessary. I did not have the mental or verbal strength to disagree, at that time.

http://www.usatoday.com/news/health/story/2012-08-16/deadly-bacteria-hospital-infections/57079514/1

Awful....

Up all night with intense hiccups(meds not working) and vomiting/dry heaves(meds not working) until 6am. He slept for 5 hours. Ate some toast and it started up again. He is now pacing around the back yard carrying his bucket. This really is awful. Day 4 of this.

Ditto Today

Last month we did not feel any symptom could be worse than those rigor attacks and his infections. Well, we found another. 5 different nausea meds and none of them are working. Larry's vomiting and intense hiccups did not respond to yesterdays IV treatments. He went back to the Cancer Center today getting another double IV of fluids and steroid/nausea medication by IV.They again wanted him admitted to the hospital. This time Larry told them no. They said that if his symptoms continue through the weekend they will want to do an endoscopy.  He has not had anything to eat or drink of any substance for days. Eating just a few crackers and he loses it. To me, this has been far worse to deal with.

The clean up and having to work with the smell of bleach has activated all my health issues. Which in turn makes it harder for me to be patient with all that is going on. I am trying to give myself a break but find it hard to concentrate on anything else. I have learned today that it is OK for me to be teary.  I am having an emotional day-ok I said it!

Hopefully with Larry being done with the chemo today, his body will find its way. He did well last time with his blood levels. That will be known next week. He is so much weaker this time around because of all he has been through over the last 6 weeks. This is the first time in over a month that his line is disconnected from his port. That gives him a feeling of some freedom. He can also shower. That alone should make him feel somewhat better.

I am NUMB and Larry's the Energizer Bunny!

I do not know what will come next. We are afraid of the next.

Larry's chemo treatment of Folfox went fine until 6pm last night. Vomiting for 5 hours. I believe he lost an entire weeks of food from the amount of the cleanup. He was also awake ALL night with intense nausea. He cannot sit still from the steroid. Last treatment he welcomed all the energy. This time he is unable to sleep and can't stop talking. Is even talking to himself and the dog when I am not in the room.

I was on the phone with the oncology Dr at midnight asking for some meds that he could take sublingual. At Walgreens at 1am waiting in line. He had none of THIS the first time around. He has not vomited since he started the new sublingual med but is very nauseous and cannot eat or drink anything. Larry and I had discussed that he will not return to the hospital unless I am not able to handle the situation. I do not want him exposed to any more infections or unnecessary antibiotics.

Last nights Oncologist and this morning received a call from a different Dr(our Dr. is away for 2 days) wanting me to take him to the hospital. They must think I am mean but I told them both-No way! I agreed that he was probably dehydrated and needed an IV fluid. I told them that I wanted him to have it in the Cancer Center and then return home. I do understand their reluctancy. I also asked them to set it up with home health to teach me how to give it but they said they could not do that since I was not a nurse. Hmmm-I could give him a potent antibiotic but cannot give him fluids??

I am not handling this very well today. Just numb and don't want to move. Larry is now getting his IV hydration at the Cancer Center-yes they finally agreed. I dropped him off and came back home. First time I have not been with him. Just hoping they don't admit him.

As I said, we are afraid of the next.

Gearing up for the next Chemo Treatment

Thank you to everyone who has called, posted, emailed, sent cards and prepared food. It is comforting to know that so many are helping to build up his energy through their own.

Larry had a great day yesterday. His infection seems to be improving. He took an hour walk for the first time. He also lifted weights, stretched and worked on projects. He felt well until last night. He was up until 3am this morning with intense nausea. Meds would not give him relief. I believe he is trying extra hard to stay active because of increasing symptoms.

There have been changes over this past week. He no longer wants to sit on the couch. Only wants to sit in upright chairs. Lower back pain and stomach pain seems more consistent. This morning he used the word pain for the first time. Previously he would call it a little uncomfortable, sensations he can't describe. Yet mostly still saying to others he feels fine.

Mentally we are all being challenged. We could not help Laura move into her new apartment that she has a year lease on. Ended up paying one of her friends family to get her furniture moved. I am driving there today to see what she needs. My son and her will then move the rest of her boxes/bags from home tomorrow. This is not how it is suppose to be. This should be an exciting time for her and us. She is very excited about her new place but it feels all wrong because we were not there. All this is very depressing to Larry. He wants to go but still feels his infection is not completely cleared. He also knows that he is too weak.

Larry talked this morning about how much he misses work, his colleagues and his students. In another week he would be gearing up for the fall semester. He came up with a plan for himself to do some writing in hopes of being able to publish another paper. I believe this will help to keep his mind occupied and feel close to what he is comfortable and familiar with.

Today is the last day of my giving him an IV antibiotic-YES!!  Hopefully this will then keep him from running that fever and having rigors after this week's chemo. Without the ID Dr getting back to me, we started tapering his vancomycin dosage. Along with that we are upping the probiotic dosage.
I believe we will both feel better once the chemo starts to do its work.
Let's all pray that his second treatment will go smoothly. Love to all.

Melody

What is C. Diff / Clostridium Difficile?

I am sharing this information so that others become educated about this serious infection. The average person's chance of contacting this is probably low. Yet, I feel that the more people are aware, the chance will then be even lower. It is a lot of information. I compiled it from C. Diff support group sites, articles and a few medical sites. Interestingly, the medical sites had the least amount of information.
We do not know how Larry contacted it. The logical place would be in the hospital or one of the Dr's offices bathrooms. It is also possible that with his body being so immune compromised, it occurred all on its own. I do know that it has complicated his situation this past month so that he was not given a fair chance to slow down his cancer. We are both hoping that this week brings better results.

What is C. Diff / Clostridium Difficile?

C. Diff is a very tough bacteria that exists naturally in the world, but is usually associated with being prevalent in health-care settings. If the bacteria is ingested, the good flora in the intestines usually fights it off.  However, if  you are immune compromised, or if you are currently on antibiotics (or were recently), you may not have enough good flora in your gut to fight off  the bacteria.  Given this environment, the bacteria can take hold and multiply in the intestines.  This bacteria releases toxins which can result in very serious illness.  C. Difficile is also very smart.  When the bacteria is in a hostile environment (like when C diff treatment begins), it can form a hard shell and become a spore.  This spore can then lie dormant in the intestines until the next opportunity arises to thrive and multiply.

C. Diff Symptoms

Not everyone will necessarily have the same symptoms. Some may experience episode after episode of watery diarrhea, with or without mucous.  Others will experience colitis symptoms and may expel blood, and can also have intense abdominal pain and fever along with the diarrhea.  Quite often, ingesting food or water will almost immediately cause the patient to race to the bathroom as the body is always trying to expel the toxins, and anything else that exists in the intestines.

If you ever get stomach flu symptoms after taking antibiotics, get to the doctor, and do not take any medicines that will slow down the digestion process. Immodium and other anti-diarrhea OTC products  just trap the bacteria and toxins in your system even longer.  

Keep in mind not every case of stomach pain/diarrhea is caused by C. Diff. Yet if it is persistant you will want it diagnosed ASAP.  Wherever you go for diagnosis, make sure you tell them you have been taking an antibiotic, even if it was 2 months prior, so they know to test for C. Diff.  As a warning, much of the medical community is not real familiar with C.diff, so don’t let the doctor dismiss you by saying you are too young or too healthy.  C. Diff does not discriminate!  A stool test is not the most fun test to take, but a proper diagnosis is crucial to get Clostridium Difficile under control, before damage is done to your colon. Be sure that you get a PCR Assay test done on only the watery portion of your stool. This is the most current accurate way of testing in 2012. 

 Examples Of C. Diff Events

A Dr. prescribes you some Clindamycin (a MAJOR offender when it comes to C. Diff.- Dentists love to dispense it ) to prevent infection. You take the antibiotic for 7 days and the next thing you know, your intestines are suddenly revolting against you. You may or may not get a fever, along with any combination of the symptoms that were listed above.  At first you might think you are coming down with stomach flu.  However, it is a flu like you have never had before. All you know is that you are in misery, getting dehydrated, and losing weight.  What you didn’t know was there was a war going on behind the scenes in your intestinal tract.  That Clindamycin was destroying all your wonderful, good bacteria in your gut, and at the same time, you were unknowingly exposed to C. Diff somewhere out there in the world.  C. Diff had no natural enemies in your gut, and since it is an opportunist, it took over and started multiplying, releasing those toxins along the way.

Doctors offices/Hospitals are the highest risk areas. High touch surfaces-including door knobs, toilet handles, faucet handles, blood pressure cuffs can contain spores.  In the hospital-bedrails, call buttons, remotes, phones, flow control devices for IV's can all be contaminated. In one study spores were found in 49% of rooms occupied by patients(CDI,apic, 2008). It is important to understand the persistence of C. Diff in the environment. Several studies found that spores can remain on hard surfaces, which have not been cleaned properly, for as long as five months.

C Diff Prevention Tips:

1.    Avoid antibiotics if at all possible.  Make sure what you have is a bacterial infection, as antibiotics do nothing against viruses.  (NOTE: This includes topical antibiotics, especially clindamycin-based creams.)  

2.    Altering the acidity of the stomach and GI tract can kill off good bacteria, allowing C-Diff to grow out of control. Proton Pump Inhibitors (PPIs) such as Prilosec and Nexium are now thought to put people at more risk for developing C Diff. http://www.fda.gov/safety/medwatch/safetyinformation/safetyalertsforhumanmedicalproducts/ucm290838.htm

3.    Wash your hands constantly, and make sure you wash for 20-30 seconds, being sure to scrub under the fingernails.  There is also a very small percentage of adults that naturally carry the bacteria, but are asymptomatic.  These carriers may be leaving C. Diff bacteria just about anywhere (like on shopping cart handles), so vigorous hand washing is crucial no matter where you are.

4.    As a follow-up to point number 3, do not put your fingers in your mouth.  Do not bite your fingernails.  Do not make it easy for the bacteria to get into your system.

5.    Change toothbrushes after every illness.

6.    Take probiotics every single time you take antibiotics, and also eat some yogurt or kefir. Lifeway makes a Kefir smoothie product that tastes much like yogurt and is loaded with great probiotics. Just be sure to purchase kefir/greek yogurts with no sugar. Add your own cinnamon, fruit or stevia. Also, oats contain beta glucans and are highly beneficial in helping to re-establish the gut flora. Purchase organic when possible.    

7.    There are 2 probiotics that have been found to help fight C. Diff:  Saccharomyces Bboulardii  and Lactobacillus GG. SB is a yeast-based probiotic which is unaffected by the bacteria-killing affects of antibiotics, so it can be taken any time of day.  Lactobacillus GG is a bacteria-based probiotic. It is best if you take your bacteria-based probiotic 2 hours or so after you take your antibiotic, so the antibiotic does not destroy the good bacteria in the probiotic .Continue to take the probiotics for a couple months after you finish your antibiotic to help keep building up that gut flora.  

8.     If you are ever hospitalized, bring your own cleaning solution and wipe down that room.  The ONLY thing that may kill the C. Diff bacteria is bleach.  Bring a spray bottle with a 10:1 bleach/water solution and wipe down the bed rails, the phone, remote, etc. Regular wipes will not work.  In addition, make sure your hospital roommate does not have symptoms of C. Diff.  Patients with C. Diff should be placed in isolation, but hospitals do not always take the illness seriously enough, or recognize it quickly.

9.    Insist that health care workers wash their hands before treating you, or ask them to put on gloves.  Do not settle for them to rub a little hand sanitizer on their hands, that does nothing to kill C. Diff.  It is the vigorous hand-washing that will get Clostridium Difficile bacteria off the hands, along with good paper-towel drying.

10.  There is much conflicting advice on effective treatments against the spores. Alcohol based cleaners are not effective yet are still being used. Soap and water can help remove spores but does not kill them. It just washes them away. Yet this is still one of the best methods of prevention. Spores have shown to still be active after 10 minutes of washing with bleach. Yet this cleaning method is the only method cited as a factor in reducing the incidence of C. Diff. in hospitals. However the study that sites this also notes that the results were not constistent.

11.  C. Diff can strike up to 60 days after completion of an antibiotic, so don’t dismiss the possibility of C. Diff just because you didn’t take antibiotics in the last couple of weeks.

 What If You Need Antibiotics

Overuse of antibiotics has become a real problem as bacteria mutates and the drugs become less effective. Doctors have over-prescribed for decades and now they are becoming much less effective. Unfortunately, most people will need an antibiotic at some point in their future.   Assuming you have a bacterial infection and you have no choice but to take an antibiotic. If you feel yourself getting sick, start taking probiotics to try to build up the gut flora.  

 Ask for sputum cultures if you have a sinus/respiratory infection.  That way                                                   you will know if the illness is viral or bacterial. If you have a Urinary Tract Infection (UTI), make sure the bacteria is cultured so that the doctor knows what type of antibiotic will kill the bacteria instead of just guessing with a broad-spectrum antibiotic. If you must take an antibiotic, ask your doctor for the most narrow spectrum antibiotic you can use that will still kill the infection. The following is breakdown of how ‘safe’ different antibiotics are.  

Following List is compliments of Cdiffsupport.org.  This website provides a wealth of information and is a great resource for anyone who needs C. Diff support.

 MOST LIKELY TO CAUSE C. DIFFICILE:

Clindamycin (aka Cleocin)
Keflex
Ceftin
Ceclor
Cipro (this was just moved to high-offender from medium)
All other cephalosporins
Amoxicillin
Augmentin
Penicillin VK

MIDDLE OF THE ROAD:
Levoflex (also Levaquin)
Tequin
Avelox
Bactrim
Doxycycline
Erythromycin
Biaxin
Zithromax

SAFER TO TAKE:  (Remember, no antibiotic is 100 percent ‘safe’ when it comes to C Diff)
Macrodantin (Macrobid)
Sulfa
Tetracycline
Aminoglycoside
Flagyl (metronidiazole)
Oral and IV Vancomycin

 Tips For Dealing With C Diff:

If you do get C. Diff, consider combining your treatment with the above mentioned probiotics.  Drug treatment does work but not for everyone. It can suppress the infection but not eradicate it. About 20 percent of people will relapse within a couple months or so of ending treatment, and it can be a very difficult bug to kill if you have repeated relapses.  So, build up that gut flora as much as possible so you create as hostile an environment in your intestines as possible to keep the C. Diff away.  Also, if you are infected, clean the bathroom with a bleach/water solution, and always close the lid of the toilet before flushing to prevent any bacteria from being propelled out of the toilet bowl.  (Closing the lid of the toilet before flushing is a good idea regardless.)  If you have a second bathroom make sure rest of family members use that bathroom, and you use your own, if you use good techniques your family will be spared. Again, hand washing is very important.  Also, try to eat a variety of foods if your stomach can tolerate it, and eat yogurt and/or kefir daily to help build up the intestinal flora.

 

C Diff Treatment of Vancomycin

 

The first treatment is usually for 14 days.  If diarrhea is not under control,  the doctor may consider prescribing 6 weeks or so of tapering/pulsing the Vancomycin

Week 1:  125 mg 4x/day

Week 2:  125 mg 2x/day

Week 3:  125 mg 1x/day

Week 4:  125 mg once every other day

Weeks 5 and 6:  125 mg once every third day

The reason for the pulse/taper method is so that the body has a chance to rebuild the flora as the amount of medicine is decreased. Doses are later given on alternating days to attack any spores that hatch back into bacteria, in hopes of killing off the remaining spores.

If Vancomycin does not work, there are other drugs that can be considered.  Dificid (Fidaxomicin) is a drug that came out on the market in 2011 that is said to have a lower relapse rate than Vancomycin. However, most insurance companies will not cover this as a first drug.

Treatments on the Horizon For CDiff

C Diff has gotten a lot of attention in recent years, mainly because there have been an increasing amount of cases each year.  However, there is a lot of research going on regarding C Diff, which will hopefully lead to more successful treatments in the future.

A few of the treatments currently in development are as follows:

1.    Monoclonal antibodies.  This therapy would still require standard antibiotic (vanco/flagyl, etc) treatment.  However, monoclonal antibodies would be injected via IV during antibiotic treatment in the hopes of preventing relapse.  This treatment is currently in phase III clinical trials.

2.    Vaccine.  There are two different companies that have a vaccine in progress.  Intercell just completed a phase I trial and Sanofi-Aventis is in phase II trial for C diff prevention (as of Feb, 2012).

3.    Non-toxigenic C Diff treatment. Viropharma is in phase II trials for their c diff treatment, which actually uses C diff against itself in a sense. The patient would still take standard C diff antibiotic treatments such as vanco, dificid, etc.  After completion of treatment, a two week oral dose of the non toxigenic strain of C diff called VP 20621 would be taken.  In this case, the non-toxigenic c diff bacteria would multiply and take over the intestine, which would crowd out and not allow for toxigenic C diff to take hold.  Over time, normal gut flora would develop and repopulate, but while that is in progress, the VP 20621 would prevent toxic C diff from recurring.