I ATE REAL FOOD !!!

Tuesday

Updating Notice

It has been brought to my attention that several people were left in the dark because I was not able to update my blog myself and I had no one else to do it for me. Well, I have changed things. My daughter-in-law Brooke has sweetly agreed to keep you updated on my behalf the next time I am in the hospital. On good days I will write up what I want on the blog and give it to her. On bad days she will have to figure out just what to tell you and how. I hope this will put all of you at ease the next time I end up in there. Let’s pray that if there has to be a next time that it is a long time from now and the stay is less serious and shorter. I just want the same great care. I want to say that I am sorry that you were left in the dark during this last hospital stay.

I have finally met my VNA Nurse, Katie, in person. I really like her and believe that we are going to be able to work well together. She is into the details when she needs to be but she can make do with what she has to if she needs to. Katie was very helpful with going through all of the supplies that had been delivered by the VNA and let me know which ones are here for when she or another nurses comes and which ones are for my use.

It seems that instead of expecting the nurses to carry a car full of medical supplies they have the appropriate stuff sent to each patient’s house. That way it doesn’t matter which nurse comes what she needs is here just waiting for her. Now I just need a better way to store the supplies. I want them out of sight, the world doesn’t need to know that I have all this stuff.

Taking “granny’s” formula is staying down today.  But that only takes me through lunch. Now what will the rest of the day be like.

I treated myself, after a very short visit to my PCP I stopped at Walgreens to get a couple of scripts and found a beautiful sundress on sale. I brought the dress. I haven’t gotten any new clothes since I learned I have cancer, but in that length of time I have lost 30 pounds. Sadly I lost the weight the hard way. But now I have something to wear that is the right size. Hurray, for the small blessings in life.

I decided to live dangerously when it comes to my dinner. I had a hamburger patty, a glass ginger ale and a small dish of sherbet. Now I need to wait about 2 hours to see what happens. But boy, did it taste good! Also, being able to eat this shows that my sore throat is going away. Now I have greater hope on being able to eat instead of using the G Tube.

But let us be realistic and understand that this is only a short lived thing. We have no idea if or how long it will take before the mass grows back into my esophagus. I plan to enjoy each day for the own great things. At the end of the day I try to think of all the good things that happened to me that day. For example last night one of our neighbors’ stopped by with some fresh cut flowers from his own garden. He gave us an arrangement of Blacked Eyes Susan’s and some Queen’s Anne’s Lace. That was a great act for this old friend of the family to do. He said he chose the Black Eyed Susan’s because I am a Susan. We have known this man for over 50 years. Thanks Eddie.

Today I could do a Snoopy Dance or two. All of my food has stayed down. And it did not hurt a lot to eat it. Thank you Lord!!!

Nursing Myself

The World of Home Nursing

Today has started out very well. I am still having to play around with just how much I “eat” and when. I am trying to make it so that my “breakfast” is the big meal of the day then have my meals get smaller throughout the rest of the day. I need to figure out just how much “food” to eat at lunch. Today I am going to stick with eating granny’s formula. It has no taste so I will need to use my imagination to make believe I am actually eating something that I would really enjoy having.

I think I need some guidance on some simple exercises that I can do to help keep my digestive system stimulated. Before I have any of granny’s formula they have me do a simple test to see if the last “meal” has been digested or not. Of course if it has not then I am not supposed to “eat” anything. Due to the results of this test it seems that my lunch and dinner are taking forever to digest. Mom and I have noticed that I am more active in the morning then during the rest of the day. This is why I am thinking I need to get up out of the chair or bed and actually do something. Do any of you have any “simple” exercise suggestions?

Now get this I am on a high level of pain medication for my cancer, I get it via IV, you would think that it would take care of any pain in my body, but no I still get headaches. I feel that when I stepped out of the hospital this last time I came home to a new world. I call this new world the: World of Home Nursing. Here I am required to be a nurse to just me! Although I wanted to be a nurse when I was a little girl I think we all know that I never did it. So, of course, it feels like an entirely new world where I have no idea what I am supposed to do. Thankfully those who work at the VNA understand just how confusing this can be for their new patients. So far they are being great to me. I called last night and was gently guided through what I could do for myself. This morning I still have a slight headache so I did more of what I did last night, took some Tylenol.

One thing that I am nervous about is drug interaction. I don’t know what over the counter medications I can take and which to stay away from. It is nice to learn some of the ones that are okay to take.

The Feeding Tube

The life of the Feeding Tube

I am going to try to do my part to make the life of using the feeding tube for most if not all of my diet is in my hands and I need to start now to end that facture. The only reason for not eating a soft food diet right now is the soreness of my throat caused by the radiation therapy. Slowly that pain is going away I was told that it would last from 8 to 10 days.

So here is my plan. I will take and during that time period I will try a few bits of “real” food each day. By doing this I will keep my throat muscles strong and keep my stomach use to digesting good ole fashion food. After the worst of my sore throat is over I will need to build up what my stomach can handle due to the length of time that I was unable to eat. I was not eating a “normal” diet for well over a month. So I will need at least that amount of time to get back to that.

Before I was discharged from this last hospital stay I was given a book about diet during and after cancer treatment. Now please try to understand that I have a live in cook. All of my life my Mom has never let go of the control of her kitchen and that has not changed even though she has broken her hip and is in her late 80’s. Go Mom Go.

When I got home from the hospital my COOK took the cookbook and she is reading all of it. She backs me trying to keep using my throat and stomach, but she guides me every time I go near the kitchen.

I know that the doctors are concerned about my weight and therefore my calorie in tack. But until I can eat three meals a day in my book they are just plain out of luck. Keeping the food in me is my primary concern.

My primary VNA nurse, Katie called me this morning to check on my pain medication amount. After getting some information and doing some sort of math problem she calculated that I have enough medication for over 100 hours. This is great news. Katie or someone she works with will call me tomorrow and do the same thing. If I do NOT have enough to get me through until Katie comes on Tuesday than someone will come out and change the cartridge of medication in my pump. Katie also told me what I call my panic number. When I look at the machine and it gets to this number than I need to call the VNA right away because I am running to low of the medication. It is great to know this number. Now about three times a day, about meals and bedtime, I can check the machine and know how I am doing. In the meantime I can go about my day doing other things and not worrying about my medical care.

Today my “rigged” following of a schedule fell apart. We had company I lost track of time and didn’t give myself the 2 pm feeding until 4:30 pm. (Oh, horrors, the world will come to an END!!!!! HA, ha, ha) Oh well that is life and I am living it. I am certain that I will be just fine.

How to scare yourself

Morning Fright

I started the day by stepping on the IV tubing, which is so short I should not be able to do that. So I checked out the tubing and sure enough a small section of it had come disconnected so I had a problem. After shutting off the pump I called the VNA service and the on call nurse called me right back. She was very calm and walked me through how to reconnect and restart the machine. So I was back with my friend the medicine within just a few minutes.

I have had a great day. Around 4 pm I started feeling crappy. I have a headache and an upset stomach. I wish I knew just what I could do for myself. I am surprised that I have any pain with all the pain medication I am on. The upset stomach crap is getting to be the norm. I pray that it will change soon.

I am hearing that a lot of you were looking for word on how I was while I was in the hospital. Before this type of thing happens again I will try figure who I can get to help me by going on to the blog and updating others. Sorry about leaving all of you wondering.

Mom says that I think too much. So today I thought I would give you a sample of some of the things I think about. I hope you find something interesting and maybe even uplifting.

Mom and I are still sitting here in awe of the miracles of today’s medical world. With a feeding tube how long ago would that have kept me in hospital for the rest of my life. Also it wasn’t that long ago that the pain medication would have kept me in the hospital. Actually it still depends on just what is wrong with you if you get to use this technically. In fact I had a doctor who tried to me that I could NOT go home with this IV machine.

These two items have not only allowed me not get out of the hospital but these things will also allow me to really live my life. President Gordon B. Hinckley, (late president of the Church of Jesus Christ of Latter-day Saints) was known for saying that we live in a great age. I have learned from his comments to look for all the good that things have to offer.

I am also amazed at how the treatment for cancer is processing. I have no idea just how long ago people with my form of cancer would have suffered with the problem trying to swallow and not being able to eat. Do people without insurance or in third world countries still suffer and die from this form of cancer. I actually wondered just how much care I would be able to get for myself. Due to how rare this form of cancer and the fact that Springfield is not one of the country’s largest cities. I wondered if I could find a doctor who had any experience treating my form of cancer. I was afraid that I could not get treatment because I could not afford to travel to where the doctor was located. But I am being blessed; I have a local doctor who has treated this adrenal cancer before. I hope you can look at your life and find all of the good that you have been able to receive instead of just looking at all the bad.  (Count your blessings!)

Home Sweet Home

Home Sweet Home

It is really great to be home.  Dorothy, in the “’Wizard of Oz”, got it right when she said “There is no place like home.” It is so nice to do things at my pace. But I still feel that if I had to be in the hospital then I am very glad that I was on the floor I was on.  I am very happy to say that even the housekeeping staff were offering to help me with anything they could.

The major part of my stay in the hospital I really don’t remember. So I can only tell you about the last five days of my stay. To those of you who came to the hospital to visit me or tried to talk to me on the phone I am sorry if I was rude to you in anyway. One couple came to visit and must have seen how out of it I was and cut their visit short. According to my Mom, I called her after their visit and told her how grateful I was that they were so sensitive to my health.

After I came back to myself in the last few days of this hospitalization, Mom said something about this same couple offering to come to the house and help her with things here. When she told me of their offer she said that they were thrilled to hear that I had made such improvement since their visit to the hospital. It was then that I realized that I had lost several days from my memory.

On my last day in the hospital while traveling to D’Amour for treatment, I said something to the team on the ambulance. One had never transported me before but the other team member had and said that one time I was clearly not myself. I was much better on my last day.

So I have no idea who called or took the time to stop by. Either way thank-you for thinking of me, I pray that the Lord has or will bless you for such thoughtfulness.

I said it is nice to be on my own schedule, but today I have had to spend half of my time giving myself a “feed” through my feeding tube. The back of my throat is still too sore for me to try any soft food just yet, but it is getting better. The other half of the day I have spent sleeping to let my food digest.

July Hospital Stay

Hi Everyone:

I know it has been 3 weeks since I posted anything. I have spent that time in the hospital. I went to the ER on 21 June 2012 expecting to be admitted due to dehydration. I couldn’t get enough fluids in me for the normal person, let alone the sick like myself.

Anything I put into me came right back up. Sure enough they did admit me. Not only was I dehydrated I was also in a lot of pain. During my time in the hospital I had a period of about a week that I have no recall of.

It took me coming back to realm of this world to get the pain under control. Because of a crazy rule about how much pain medicine was allowed to be kept in reserve on the floor.  I needed 9 units of this medicine and there were 10 in the storage. Because of there being another patient on my floor needing this medication they could not give me mine. There system would let them give me a partial dosage of my medication. By the time I had learned this I had been waiting for pain medication for over TWO hours!

I requested to speak to whoever was in charge and I raised a bit of HELL!!! It was night time and the real big bosses of course where off for the day. However, the next day those who could really do something did resolve the problem. In fact while I was taking a sponge bathe the next day the head of the pharmacy came to apologized to me. But without knocking in any way he walked in on me! He was more embarrassed than I was! Modesty is something you lose in the hospital.

The reason that I could not keep any food down was the mass on my neck was crushing my throat to the point that I could not swallow. Because they needed to get food into me without waiting for radiation to be completed and if it was successful, they put in a food tube. They wanted to scope my throat to see what if any blockage I had and asked if they could insert a tube if they found one. I do NOT feel that I am at the end of my battle with cancer so I told them yes.  I expected that there was some sort of blockage so I gave them permission to insert the food tube. I am now able to eat soft foods. However, the radiation of my throat caused a side effect of a wicked sore throat. I was transported by ambulance from the hospital to D’Amour Center for Cancer Care so that I only missed 1 treatment. I only missed that treatment because the pain was not under control yet. The guys and gals that work on the ambulance service were great. They not only treated me professionally when it was right we all laughed.

I was also blessed by having the same treatment team at D’Amour for this round of treatment that I had had before. They are a great team and we get along wonderfully.

It is supposed to last for 8 to 10 days after the last day of treatment. TODAY, was the last day of treatment, they let me take my mask home. I had to wear the mask to keep my head stable during each treatment. So my sore throat should go away somewhere between the 20th & the 23^rd of this month.

The last few days of my hospital stay was all training for me. Both my day and night nurse stopped using the feeding tube and took the time instead to teach me how to do it. Although I made a few minor mistakes at the very beginning before I was discharged I had it down. They teased me that I looked like the “mad” chemist watching me do it to myself. I can’t swallow pills of any size until the sore throat clears up. So I was taught how to crush them and flush them down into me through the “G” tube. So I fixed dinner, ate it, had my meds and cleaned up in just 20 minutes. It used to take me an hour to have my formula in the hospital. The body doesn’t like this change so I don’t “eat” has much at each meal. So far that is working very well. Before I reduced the amount of “formula” per “feed” it would not stay down. But now, so far, no trouble; I expect this to last for about two weeks. Half a can of “formula” at a “feeding” seems to work so it will take more time to get the “food” down.  Rats! Rats! Rats! About a third of dinner just came up. But that is better than all of it yesterday.

I am very happy to say that the last three days of my hospital stay was great. I made a great new friend, Caroline.  She is a great gal we laughed and learned from each other. The nurses described us like a couple of high school girls having a sleep over. We were up most of the night one night. At times Caroline and I were laughing so hard we were crying. I look forward to getting a hold of Caroline in the next few days. I felt really good, and I learned a lot.

My nurses Debbie and Renee are the tops. They did a great job of teaching me and working with my learning techniques. They both told me I could teach classes or become an RN. For a few minutes Renee put her RN ID badge on me. We had someone else take a picture of the two of us with my cell phone.  These gals encouraged me every step of the way and when I ran into a problem they gave me a chance, if they could, to figure out the problem and its solution. This is the way I feel I learn the most.

I spent the last three days in the hospital trying to learn what I needed to not just about my ‘G’ tube but about any and all services that I could get for us once I got home and doing what I could to get them in place before being discharged.

The beginning of July each year is when new Interns and Residents come to work at the hospital. So I said good-bye to one (Dr. Lee) and hello to another one (Dr. Yang). Both seemed to be very good I really liked them. The attending doctor over the new group was really great. He came in with his entire group of “student” and guided my doctor along with the rest. When he learned that I was dragging my feet about going home because I wanted everything properly lined up at home first he was great. He turned to the students and asked them what has my doctor they could do to help move that process along. And my goodness did they ever move it forward. The very next day I say so many doctors and social worker type people that I had one talk to me while I ate my dinner. But thanks to their help everything that could be done from the hospital got done.

Now I am home and completing that process, the things that had to wait till I was really home. I came home a couple of days earlier than I thought I wanted to. But my nurse Renee explained the benefit of coming home before the weekend and she was very right about it. Yesterday when I got home the “formula” that I need to live on had not been delivered even though the company had been here. I made one phone call and it was resolved. It would have taken a lot more work on a Friday or Saturday to correct this type of problem.

If the last three weeks were as crazy for you as they were for me then I hope I hope it was better stuff than a stay in the hospital.