Round 2 day 3

Round 2 Day 3

I don’t think that I have told you but since I came home from the hospital last week I am being seen twice a week by the VNA.  They are monitoring my progress with the blood clots in the lungs, my injections, and use of the oxygen that I am now on. Today my case manager was back to work after taking a vacation, she was Mom’s case manager when she fell a year ago. She took a very complete background on my health history.  She says I am doing great when it comes to giving myself the injection. It doesn’t bother me to do it at all. When she listened to my lungs she says I have clear lung sounds. However, developing these clots is a side effect of my chemo due to the type of cancer that I have so I need to be monitored so that they never get as bad as they were a week ago.  She says that I can walk around the house for short periods of time without wearing the oxygen.

Yesterday a different VNA nurse was here just to check my oxygen use. She tested me to see if my body would trigger an on demand oxygen tank, and it does. So now I have two smaller portable oxygen tanks that work only on demand. Each one is only half the size of the constant flow oxygen tanks. They also last between 4-5 hours instead of just 2 hours.

Last Sunday I could only attend Church for Sacrament meeting because I did not want to carry two tanks with me. Now if I feel up to it on Sunday I should be able to attend all the meetings. That will be great to have the choice.

The VNA case manager has suggested that I consider being transferred from med/surg VNA care to palliative VNA care. This is NOT the same has hospice care. This is care for people with long term illness’ and a group of nurses that will be able to help me know what could be coming down the road for me and help me with my care options. Next week I see my primary oncologist and plan to see what she says about this care switch. I want more information before I make any type of change. I am glad the case manage made me aware of this option because I knew nothing about it.

I don’t think I thought to tell you in yesterday’s post that I saw my radiation oncologist and he is so delighted in my attitude about being treated here at D’Amour that he asked if I would be willing to be interviewed on video for within the Center promotion of the center. Of course you know I said I would be happy to. I am very pleased with the care I am getting there. They have a great staff and truly seem to care about me and my comfort and well being.

I hope those of you who are following my blog find at least some of this day to day stuff interesting or at least comforting in knowing how I feel about my care along with how I feel physically. Today has been a great day.

PS the back ache is gone.

Round 2 day 2

Yesterday I learned that I had bald spots in the back of my head. So seeing that my hair is not just thinning until gone I chose to have my head shaved. It was driving me crazy hairs everywhere.  It was a startling sight to see my face under that bald head, but I will be fine with this.

NO ONE needs to shave their head to support me! If you want to support me than wear a hat once in a while.

Today's chemo went well, but for some reason I have a very bad back ache so off to sleep and hope all is better in the morning.

Here is the Bald Suzie

Chemo Round 2 Day 1

Round 2 Day 1:

Is it worth doing anymore chemo-therapy? I can only speak to for myself. It is worth it in my case? When the oncology doctor saw me last week she said that just looking she could see a change in the mass on the left side of my neck, it was smaller by about half. She then examined the mass and it was softer, and now my hair is falling out. I was just told by my nurse that not all chemo will cause hair loss. Now in my case I was told that I would lose my hair. So to answer my own question, yes in my situation I think it is worth it to do the next round of Chemo! I do respect that each person must make their own decision not all forms of Cancer are the same so for other they must make their own mind and must base it on what their body is doing.

While I was having my chemo I placed a call leaving a message for my primary doctor asking her to order refills of some of my medications. After I got home and we were about to sit down for dinner my doctor called me. She wanted to talk to me and wanted to make sure that she had the messages straight and that I would have exactly what I needed.

Some people put down the medical care in our country. I may not have the “best” health insurance company, or the most expensive policy. While I was having my chemo- therapy my insurance company called to check and on my care for this last hospital stay. I think that checking on me like that was very good care.

I count my blessing for the medical care I am receiving throughout this experience with cancer. I feel very sorry for those who don’t feel they are getting good care or don’t feel they can trust their doctors and nurses.

Tonight one of my granddaughters said she could see a bald spot in the back of my head. So I think in the next day or two I will go ahead and have my head shaved. I wouldn’t mind it if the hair just got thinner, but having bald spots all over the head is not cool in my mind. 

Best of all to all of my friends. I really like the cards, notes on facebook, etc. they all bring me a great deal of happiness.

Memorial Day 2012 & Hair Falling

Memorial Day:

Being the mother of two vets, the ex-wife of a vet, the daughter of a vet, and so on all the way back to the Revolutionary War, I do not think of today has just a day for a good ole BBQ. I don’t think there is anything wrong with having a BBQ as long as you remember those who gave us the freedom to do so.  Due to lack of funds, health, and weather, we choose to stay home and observe the day quietly. I hope that no matter what you did today that you thought about those who are willing to wear the uniform and write that blank check.

Today has been a good day. I am finding that I am still getting tired very quickly but that is okay. I try to take all of the tasks I would like to do and break them down into manageable bite size pieces that I can handle. I do give myself deadlines to get things done by but they are not carved in stone. Each day I look at my to do list and see what I can do for the moment. I do that cross it off my list and say well done.  I am finding that if I work based on time rather that how far I have gotten I actually am getting more things done.

I have rewritten my medical information paper that I take to the ER. The last one seemed to confuse some nurses. Some of it is because the hospital pharmacy does things very differently than the public one does. (How was I supposed to know that?) Then the other problem was caused by a lack of common sense. I had just one nurse who thought that while I was vomiting was a great time to give me a pill to prevent vomiting!!! I have learn, at least for me, that if I take that pill about 1 hour before I eat, the food stays in me much better. So now I have a two page sheet of information. The first tells who I am, my medical history, and the name of the ONLY doctor I refuse to allow to treat me. The second tells them exactly when I take each medication and the grand total amount of pain medication it take. They don’t make it in a pill that size. Then the fact that I take the vomiting medication 1 hour before my next meal is also spelled out on this sheet. I hope this will reduce the confusion the next time I have to get admitted. I also plan to carry two copies of these papers, one for them and one for me to hang onto so that I can show it to them and ask them what they don’t understand.

Hair falling out is a good thing!

My hair is falling out by the handfuls. Everyone yesterday said that they would find that very upsetting. I was told that if your hair is not falling out then the chemo isn’t working.  Now while in the hospital the head oncology doctor, Dr. Hu said she feel that the growth on my neck is down by about ½ of what it was and it is softer. So those two factors and then the hair falling out is a great sign to me. I believe that the chemo is working and doing just what we want it to.  So if going bald means the chemo is working I will be very quick to say that in my case BALD IS BEAUTIFUL, and bring it on!! Now that you have read this and if my information is correct please be happy for me. I expect to wear hats, wigs, wraps, and other things to cover my head. But I also just might go out bald. It depends on what they tell me about sunburn on the scalp. Just one little step at a time.

I have had a great quiet day and I hope each of you have too.  Love to one and all.

Nasty Ole Blood Clots

Thursday, May 24, 2012, I am home after four days in the hospital again.  Sunday evening I was having respiratory problems. I knew that I was having chest pain and trouble breathing, but I had no idea why. I called 9-1-1 and told them that I was having chest pains and trouble breathing. I was then taken by ambulance to Baystate Medical Center.  While in the Emergency Department they did a contrasted CT Scan of my lungs. It turned out that both lungs were covered with a thin layer of blood clots. This is a side effect of cancer and its chemo-therapy.  Of course, this meant that I would be admitted. I was sent to ICU. So here was another first, I had never been in ICU before or is it has an adult? They were not use to having a patient that not only could but was awake enough to talk to them.  The people there, in ICU, where just wonderful to me, what a great team of people they are to work with.

On Monday evening they decided that I was no longer sick enough to stay in the ICU any longer. This started a downward spiral emotionally for me. I was terrified of being put in any other section of the hospital. I didn’t want to be anywhere near that Dr. Philip Huh, that had discharged me so incorrectly in the past. It turned out that on the Monday evening shift I was assigned to the night nurse manager. Well, when she started talking to me about transferring me out of ICU I actually started crying. She naturally wanted to know why I was so upset. So I told her my complete tale of woe. After hearing the entire story and asking a few questions to be sure she understood what had happened to me, she assured me that I would not be seen by that doctor in that hospital ever again. Mary, the nurse, started by writing a paper note saying that he was never to treat me and taping that to the outside of the paper file. Then she wrote the same note on the paperwork inside the file. Finally she brought the computer into my room and after writing a note to go into the electronically keep records, she read me what she had wrote and asked if she had summed the situation up correctly. I told her yes and she then saved it into the electronic file. With all this done I thought that I felt a great deal better.

Tuesday, I found that things weren’t going quit as smoothly as I thought they were. The first part really started on Monday evening they had a great deal of trouble understanding just how much pain medication I am supposed to get every 8 hours. They also failed to use any sense about when to give me medication to PREVENT vomiting. They thought it would work after I had already started vomiting? I don’t understand their thinking, but they now know how I think it should be done, at least for ME!!!

Then I realized it was the 11^th anniversary of my Dad’s death! Pow, knock my feet right out from under me. Emotionally I hit rock bottom, and just has I did that the hospital care coordinator stopped by. That poor young lady got a lot dropped in her lap, but took care of all it as much as she could. I told her my tale of woe with Dr. Huh and she has referred the matter to the person in charge of hospital and quest relations. She told me it could take 3 or 4 days before I hear from that person, but that is okay with me. When she saw the emotional state of mind I was in she offered physc help, of which I said yes PLEASE. We then talked about the medication misunderstanding and she had that straighten out in a very few minutes. Just after supper a man from the physc unit stopped by to see me. Although he could not solve my problems it did me a great deal of good to talk to him. One of the things that was happening was I was having nightmares. I even had one of my hospital roommate dying, and 86 year old lady whose name I didn’t even know.

When I had called Mom to update her about my care I found that she was in just as a blue mood as was in. That is really spooky. But of course, Dad was her hubby for over 53 years so it makes sense.

The great thing that happened on Tuesday is that my Dr. J. Hu stopped by and she is certain that the mass on my neck is almost shrunk by half of its size and it is softer also. So the chemo is working!!! I am so thankful and excited by this news. To me it makes more sense to continue with the chemo treatment I was able to figure out that the treatment was not the cause of my blue mood. I feel it is a lot of things coming together.

So just maybe I can really get the right help. I think what I am going through is a complex set of issues. I think my Mom is going through the same issues, just from a different; view point. Several professionals asked me if I thought it would do any good talking about them. I think it will do me some good. I figure between the teaching of the Lord, within the scriptures, and whatever they teach me I should find some final common ground and get some help. I have had counseling in the past and I usually find it very helpful. So I will pray about the man I am being referred to and what the Church teaches, us as long as the two things are not worlds apart I will be just fine. Besides I don’t have to stick with the person Stephen suggested. I need one with similar ideas has the Church then I will check him out.

The next day the nightmares where gone. And all of us agreed that I was ready to go home.

It is now Sunday, May 27^th and I have been home since Thursday afternoon. I came home needing to use oxygen and give myself a daily shot of lovenox, a blood thinner, until I follow up with my primary care doctor sometime next week. I was taught how to give myself the shot while in the hospital and I am having no problem with it. I am also not having any problem with the oxygen. I can be either in the living room, (first floor), or in my bedroom, (the second floor), without a problem. I can actually be off oxygen long enough to walk down stairs. Setting up the oxygen so that I could do this took a little work but between, my son, Frank, and the technician from VNA they had it set up in no time.

Hopefully my next post will be a short one with little to tell. Until then I hope you are all doing well thanks for keeping me in your thoughts and prayers.

exhausted Friday

Blah, what a rotten day, I am having. I don’t have enough strength to go up or down the stairs. It’s a good thing I have some food and water in my room to hold me. It is also nice that I have a half bath up here. Just using it wears me out for a good hour. I pray this passes before the baptism on Sunday.

I hope all of you are well.