Eat whatever you want

My doctor told me that many women gain 8 to 10 pounds while on chemo for C. I haven't exactly figured out how. Between the diarrhea which hit me again and the way food tastes now, it is hard to imagine how one could overeat. I remember pre-chemo enjoying food, well it wasn't really that long ago. 

Now I wonder each time I put something in my mouth how it will actually taste. When we went to North Carolina we were drinking tap water with ice made from tap water. I fixed myself several glasses and drank it. Finally, I asked Steve why we were drinking such awful tasting water. It turned out that I was the only one who thought it tasted bad. I find very few liquids that taste good to me, but I am drinking apple juice and peppermint iced tea with some small enjoyment. (peppermint tea courtesy of Cameron Smith)

Food can taste good one day and not the next. During my stomach upset I lived on bananas and banana bread. I will make sure to always have a loaf in the freezer ready if needed. When I talked to the nurse yesterday she said to eat whatever works. If all I can eat is candy bars and junk food than so be it. Chocolate does not taste so great right now, so I am not going there. I want to eat a healthy diet especially while I am on chemo, but it is a trial. This is the first time in my life that I was told by a doctor not to lose weight. I wish that I could enjoy that thought. 

Also, they gave me some relief for the hand-foot syndrome. I am off the pills from my evening Friday night dose until Monday morning. If my situation improves, then I will resume the pills at a lower dose until Wednesday. For the 3rd cycle I will begin the pills at the lower dosage. Hurrah, they listened to me and gave me a viable solution. I hate the Xeloda. 

Another day in discomfort

No, my  hands and feet aren't better today. The nurse suggested that I put my feet up. Okay, I can do that, but I wish that I didn't have to today. Oh, well. 

Last night I had horrendous diarrhea. You didn't want to know that, but it helps to describe my overall well-being. Not so great. Immodium is a wonder drug though it is so nasty tasting that I could barely get it down. 

If you visit the blog to see that I haven't posted in a number of days, there are two possible explanations. The first is that I am doing so well that I don't have time to stop and write because I am busy enjoying myself out of the house. On the other hand it could be that I am doing so poorly that I don't have the energy or fitness to sit at the computer and type. Since I can bring a laptop to bed, it must be that I am really out of it. 

Side Effects- each day something new appears

For two weeks after the drip I take this pill called Xeloda. On the first day that I received it, they handed me a pile of literature highlighting all the side effects. Then they said don't focus on these because there is a good chance that you won't have any of them. Well, I now have palmar-plantar erythrodysesthesia (PPE) or in layman's terms hand-foot syndrome. It is not so bad looking-I have redness on the palms of my hand and the bottom of my feet. The reason that I am miserable is because every step that I take is painful, every time I touch something to pick it up it is painful. There is no magic pill to make this go away except a reduction in dosage. I have a call into Ochsner. Hopefully, they will be able to recommend something and I will be able to walk more comfortably tomorrow. 

Chemo is the pits. 

Feeling the effects of the 2nd treatment

I wanted to let you know that I had my hair sheared on Friday. My already very short hair was coming out in handfuls. I went to Kenneth to have him cut it as close as possible. I have about one half inch fuzz all over my head, and he left the hair in front of my ears. I imagine all that is left will eventually fall out. When you see me, I will be in scarf or hat. I did buy a wig, but I am not sure how comfortable I am wearing it. Kenneth has been cutting my hair for over 20 years, and I reminded him that I will be AWOL for awhile. He invited me to visit, but I don't think visiting the hair dresser will be high on my list of to dos. Too depressing, yes I am feeling not so good about the bald head. Though Steve is being very supportive, and if you have met some of the men in my family then you know that bald is a very common look.

My sister visited the traveling Fight Back Cancer Bus while it was in Atlanta. You can see the back of her large straw hat in the picture below. By the way, she has not had two bouts of breast cancer. She is a two time survivor though: breast cancer 12 years ago and thyroid cancer last year. The bus will be in New Orleans on June 30th at the Patrick F. Taylor Hope Lodge on River Road. I plan to make a trek over there to sign it too. Here is a link with information==> http://acscan.org/events/view/event/175

Now to my state of being after the second treatment. Actually, day 3 and 4 of this cycle were better for me than the first cycle. Today is day 5 of the cycle, and I am still house bound. I just don't feel good. I am slightly nauseous and very tired. I have fingertip pain which is a side effect of the drugs and now pain on the bottom of my feet. It hurts to walk. I hope that will be fleeting, but I don't know. Each day is new for me.

Chemo treatment #2

Today Steve and I met my new oncologist, Dr. Larned. Click her picture below to follow a link to her resume. We were very pleased with the way that she handled all my questions about the side effects that I have been having. She had read my file and seemed to get a good sense of what we expected from the treatments. I think that we will be happy with her. She has promised that she will be at Ochsner for the long haul.







My friend Leslie McDermott (15 year C survivor) met us after the doctor visit so Steve could head off to work. She sat with me in the chemo room. As you can see in the picture she did a bit of work while I received the drugs. Ha ha, we actually talked most of the time. Leslie discovered that the woman who ran her C support group is now working as an oncology nurse. They were thrilled to see each other, and it was a happy reunion. Leslie still meets with her group several times a year for social get togethers, and she hoped that Christine will join them next time. I am hoping to go to the next gathering too.


My next treatment is 3 weeks from today. My friend Jo Ann Moinet has offered to sit through the long procedure with me.

Two down, six more to go.

Trip to the Outer Banks of NC

We stayed in Nags Head, NC for four nights. By day Steve and I traveled around seeing the sights. The highlights included the lighthouses at Cape Hatteras and Bodie Island and the Wright Brothers Museum.

Here is Steve standing in front of the Bodie Lighthouse.

In the evenings we shared a meal and spent time with the whole Simon clan. The family was gathered to celebrate the 50th wedding anniversary of John and Louise. Visiting with the kids was fun because we don't get to see them very often. From left to right: Kieren, Taran, and Bronwyn Smith children of Julie and Cameron who live in Dayton, OH. Bronwyn is holding Dennery Simon; her brother Kaleo is sitting on the far right. They are children of John and Elizabeth who recently moved to Sugarloaf, NY from NYC. Lenka Simon is sitting next to Steve and Nik is on Steve's lap. They are children of Richard and Olgica and live in Oakland, CA.

As you can see, I am now wearing a head covering full time. My hair started shedding a week ago and now needs to be cut off as I am losing hair by the handful.

Leaving town

Tomorrow we are off to Nags Head, NC for a much deserved vacation. We are joining the whole Simon clan on their yearly family summer trip. They will be 8 adults and 7 kids strong. Louise, the matriarch of the family, is a C survivor for about 20 years-give or take a few. We get to see our 4 year old godchild, Kaleo, who we have not seen for way too long, and we finally get to meet his baby sister, Dennery. It should be restful and relaxing.

Don't worry, I am bringing plenty of sun screen and long sleeves and do not plan to hang out in the sun.

Meeting my new clinical trial nurse and battle scars

When you sign on to be part of a clinical trial, you are assigned a nurse who is there to hold your hand through all the phases of treatment. I called my nurse last week to speak to her about some of the side effects that I was having and found out that she no longer works for Ochsner. I was surprised and upset. She had promised to be there for me and now she wouldn't.

I have a new nurse. Her name is Melanie. When I was at Ochsner yesterday to see my surgeon, I made a date to meet Melanie. She was very sweet, and I am sure that she is going to be a big help to me. I just hope that she isn't so overloaded with new patients now and that I will not receive personal treatment. Unfortunately, she will be on vacation when I have my 2nd chemo treatment so someone else will be filling her shoes that day. That should not be a big problem. On the 19th I will be meeting my new oncologist as well as getting my next treatment.

My appointment with the surgeon was just a check up for him to see how the port-a-cath site looks. The port is used to administer the chemotherapy drips and to draw blood. It has already been used, so I know that it is working fine. I won't see Dr. Corsetti again for a few months. He wants me back after my last chemo, which will be around the end of October. He will then schedule my surgery which should happen about a month after my last chemo treatment. We are still hoping that the tumor will shrink and that I will be a candidate for lumpectomy. Dr. Corsetti is very confident that this will occur. I had a number of questions for him about my C, but he said that he will be able to give me answers once he performs the surgery.

Feeling really good these days. I have a week off of meds. Yea! I can eat again too!

It takes a lot of meds to kill C

Here are some of the medications that have been prescribed to me since I was diagnosed April 11th. I have also included some of the helpful over the counter drugs that I have needed. I am not a pill popper so having to take medications on a regular basis is very foreign to me.

Taking time in the garden when feeling good

Another day on chemo

This was another bad day for me. I just didn't feel good this morning, and I didn't want to get out of bed. As a matter of fact I am tapping away on the laptop in bed right now. I did get up and get dressed and make a trek to the store for food that I can eat. The side effects have started. So if you don't want to know about them, don't read any further.

The pills that I have to take for 2 weeks, I will have one week with no medication, cause mouth sores or mucositis in doctor-speak. That means it hurts to eat and swallow. My morning grape nuts are a nightmare. The nuts that I enjoyed, well they are out the window. I haven't eaten pudding in years, but it sure works well now. Yogurt that is great too. I am not much on soup, but I guess that I will learn to like it. Jello, well I haven't eaten that in years either, but it is quite soothing to the throat even if it doesn't give much nutritional value. I am trying to eat a healthy diet, but when the main consideration is softness and ease of eating it is hard to find good nutrition. One website suggested baby food, but I don't think that I am there yet.

The up side to all this-I have the time off from school to stay in bed if I choose. Tomorrow I made a lunch date with my friend Deborah Oppenheim, and I hope to feel well enough to go. Deborah is a breast cancer survivor for at least 6 years, maybe more.

Chemo = good, Cancer = bad

I had a revelation of sorts while waiting with Elizabeth in the Chemo room. I looked over at her sitting in the chair with these powerful drugs dripping into her body and realized that chemo isn’t evil; chemo is good.
Chemo is a dreaded experience, one that most people will avoid at any cost. The negative side effects are discussed over and over. Everyone is aware of them. Every Doctor and every Nurse we talk to is constantly warning us about the problems that may develop. No one has spent any time telling us about all the good that will be done. We never hear how these drugs attack the fast growing cancer cells and destroy them. How the tumor inside her body will be eaten away. I find it very odd that chemo is looked upon so negatively. It needs some positive pr. Chemotherapy: happily killing cancer cells 24/7.

In the dumps

Yesterday was not a good day. I woke up queasy. After some ginger candy to settle my stomach, I was able to eat a piece of toast and drink a cup of tea. I barely got out of bed all day. Steve urged me to join him on the evening dog walk, and I was able to manage that. This was the first time since my diagnosis that I actually felt bad.

Today I feel better, but I am very, very tired.

I am taking an oral chemo medication for 2 weeks. Even though the drip was last week, I still have fresh drugs coursing through my body every 12 hours. I get one week off from chemo before the next drip. I sure hope this tiredness does not last.