My husband and I were on our way to my chemotherapy injection at the hospital when we started talking about my hair & the fact I had been growing it out. I told him how much better I liked my hair long, but that it was so much work that it takes twice as much time & energy to do something with it.  However, I have kept it short for the past 6 years or so purely for the wash & go factor. He posed a question to me that I had never really thought about. He asked me if I wished, at times, that the chemo would make my hair fall out. Hmm….

I have never really thought about it but in a lot of ways, yes, I do. To be clear, I am grateful that I am lucky enough to have kept my hair & that I “Look healthy”.  I say it like that because it really is a double-edged sword. The types of chemotherapy drug I get don’t cause you to lose your hair, or if it does happen it is very rare. When I go into the oncologist’s office I don’t get the same treatment as some other people who get chemo because I don’t look like I am in chemotherapy, so therefore it must not be that bad.

Typical chemotherapy patients would get a form they filled out to rate their symptoms they have with the chemotherapy, such as how tired they are, if they have nausea, or vomiting, and other normal side effects. I don’t get this form to fill out, even though I have the same side effects as traditional chemotherapy minus the hair loss.  The exclusion me feel as though my cancer doesn’t count and that my side effects are less important than everyone else’s.

The double edge sword is that sometimes people don’t get it. They see me for how I look on the outside and they have a hard time understanding I have cancer. That even though I look good on the outside it doesn’t mean I feel good.  I don’t want people to feel sorry for me, but just once I don’t want my illness to be questioned: “You look so good… You can’t be that sick.”

So yes some days I do wish my hair would fall out.

Tonight PA decided she was going to cook. I heard her in the kitchen making all sorts of racket. I called after her and asked her what she was doing & she said “I making Cheese  Lettuce Delight momma.”

So I went to see what she was up to because there was a lot of noise in the kitchen and this usually is not a good thing. Sure enough she had the lettuce and cheese out. She asked me for a plate, so I got one for her. Then I went to grab my camera, because this is always something to document.

The following is in her words (as far as the explanation under the photos).

“First put lettuce on plate”

“Then cheese on it”

“Have to put in bowl cause it messy”

“Stir it up”

“Now eat it mom. I make for you”

Of course she made it for me, after all it is green and she would never eat anything on purpose that was green. Not only because of the color but because of the texture. I have to give her credit. She did do a really good job. She also did a good job telling me what she was doing. I guess sort of a lesson in being able to explain something in steps. Something that is rather difficult for a child with ASD (autism spectrum disorder ).

I have recently taken up an old hobby again just in a new way. I love photography always have, but since I do not own an actual camera I thought my days of “real photography” were over. That is until I discovered the camera in my Blackberry Style phone a while back. It actually takes some great photos that I have posted in the past. I am not savvy with photo shop & have been looking for something easy to use.

Then thank you to some awesome apps for Blackberry phones I can do some pretty neat stuff. I found this free app called Photo Studio: Editor and I have used it quite a bit over the past couple weeks. It can be quirky & temperamental at times (it kind of stalls out here and there), but over all I am pleased with it. I am just using the free version right now. I will be purchasing the expanded version this next month. I look forward to being able to do more with my photos & maybe start using some of the apps for Blackberry Playbook.

 

Below are some of my favorite photos I have put through the Photo Studio: Editor App.

My husband loves sweets. We all do, but last year he was diagnosed diabetic. I wanted to continue to make the food he & I love. So I started experimenting with the recipes I had making them more diabetic friendly. Here is one of our favorite.

Pumpkin-Zucchini Bread

(low sugar & whole wheat)

Sift together

1 ¾ cup wheat flour

½ tsp. baking powder

1 tsp baking soda

1 tsp salt

1 tsp cinnamon

2 tsp pumpkin pie spice

 

Cream together

½ cup sugar

¾ cup splenda

1/3 cup butter

2 eggs

1 cup pumpkin

1 ½ cup zucchini

1/3 cup milk (or soy milk)

1 tsp vanilla

 

Mix together both the dry mixture & the wet ingredients together.

Add 1 cup raisins

Put in a greased pie plate & bake at 350 degrees for 45 minutes.

I have gotten many requests from friends for this recipe so I thought I would post it. It is a different take on traditional pumpkin bread. Being my husband is diabetic I have taken to making many of my husbands favorite recipes healthier. Mostly what I have done is substitute white flour for wheat giving it more of a nutty flavor & adding fiber. I also substitute regular sugar for a Splenda/sugar mixture.

A Healthier Pumpkin Bread

Sift Together

1 3/4 whole wheat flour

1/2 tsp baking powder

1 tsp baking soda

1 tsp salt

2 tsp cinnamon

2 TBP pumpkin pie spice

Cream together

1 c. Splenda

1/3 c. sugar

1/3 c. butter flavor crisco

2 eggs (large)

1 c. pumpkin

1/3 c. milk (I use almond milk unsweetened)

1 TBS vanilla

Add

1 c. raisins mix in at the end

Put in two greased bread pans (optional sprinkle with brown sugar op top) and bake at 350 for 1 hour.

I’m bored & my husband has accused me of hovering. I asked him what I should do and he told me to write a blog post about being bored. So here goes and for the record he cannot come back and say anything because he told me to do this.

I’ll admit it I don’t entertain myself well & after I have been sick for a few days I need to get out to do something. I already picked up the living room & have dinner in the oven and to set the record straight I did try to entertain myself. I went on to Facebook no one really was on line so I could not chat with anyone. Unless you play games (which I do not) then Facebook becomes boring after about 5 minutes. I went onto Pinterest too & well nothing was peaking my interest there either. I trolled Twitter for a bit & you guessed it. It did not really pull me in either. I also thought about some of the unfinished projects I have, but soon realized I needed something for just about everything so I was back to not being able to go anywhere. Besides sometimes I just want to be entertained. Is that so bad?

See everyone in my household all have something they go & do during the day. My husband has school so he gets out most days to study at our local Starbucks and has school every Wednesday night. My 17 year old has High school and also has church activities every Tuesday night. Even my 4 year old has school most days. Even if it is just 4 hours a day even she gets out of the house.

The only time I get to get out is when I can con someone to take me.

Unfortunately I cannot just get out of the house on my own. See I am not able to drive any longer because of health and vision problems.  I have to depend on others for rides. Usually when I am bored & want to get out to do something, I just hover around my husband & he usually gives in. Right now I can’t think of anything to do that doesn’t cost money & somewhere I don’t have to walk too much. Being it is getting ready to storm outside he doesn’t want me out in it. I feel like a little kid stuck indoors watching the world go by.

Of course there is always housework **sigh**

So I have written in the past about PA’s fear of flies & ants (well bugs in general). This is not a “Yikes a spider” type of thing but an out right screaming tantrum refusing to step into the room with the bug wakes up with nightmares type of fear.

I made the mistake last summer to take PA horse back ridding in hopes it would help her core strength & balance issues. Well it backfired on me. What is the one thing you cannot get away from around horses? You guessed it Fly’s & Ants. After that disaster of an outing it took her 2 weeks before she would sleep the 4 continuous hours a night before waking.

Now back to the present. We are very carful about the bug issue around here & it’s not easy because for some reason we moved to a place where the flies are HUGE and abundant. My husband is always on the look out for flies & actually carries a flyswatter around the house with him. One of these days I will make him a holster for the thing **laughing**.

So over the past few months we have not had a bug incident & no real mention of them (thank heavens). That is until very early this morning (4am to be exact). I woke up to her screaming at the top of her lungs that there were ants in her bed & just sobbing about how they were crawling all over her. It took my husband & I a long time to get her to calm down & had to move to the front room before she would calm down. Even then she was still acting like she had ants crawling on her. Needless to say she did not get back to sleep & thank heaven to my Shann (her 16 year old sister) for taking over for us after she got home from seminary (early morning bible study). My husband & I were able to get another hour or so before we actually had to get up & get going.

The rest of the morning was traumatic & she was whiny & defiant. I felt bad for sending her to school that way, but we needed a break. Now she is home & obviously tired. I still have no idea what brought this on. The only thing I can think of is that she has been picking at a hangnail she got & she is interpreting the sensation of that like she has ants crawling on her. We often have to cover up sores on her or she will pick obsessively at them until they are covered & out of sight. However she will take Band-Aids off & will not keep them on. Then she keeps picking at her sores. It really is a no win situation.

So I am left wondering how long she will not be able to sleep & how long she will keep having nightmares. I actually had thought she might be hallucinating this morning, cause she was wide awake & still was picking at her skin like she had ants crawling all over her. I am just not sure how to approach this. Even if we try to talk to her about it just makes her think about it more.

So frustrating sometimes when you just don’t know how to solve a problem like this with a small child let alone a special needs child.

I have no idea how she can sleep after getting all those steroids & albuterol. I feel so bad for her. This is her life…She’s a trooper…

Tonight I went to a women’s church group. I like going to these because they are usually fun & they get me out of the house. One of the few times I get out of the house by myself. Not being able to drive kind of sucks & limits what I do.

Lately it has become near impossible to get through one of these evenings without having to answer some uncomfortable questions. I have come to the conclusion that people are really curious in general about death. They are also curious about how people deal with being told, “You have __ years before you will die from your disease.”

In the past I have been able to avoid these questions by turning the conversation around or jumping subjects. I have also been lucky to keep most of what I deal with under wraps so to speak. Not talking about it doesn’t work much anymore because of all the time I have spent in the hospital in recent months & people have actually found out that I have cancer.

It doesn’t bother me to talk about it. In fact anytime I can raise awareness about Carcinoid cancer the better. Being it is so rare I often have to go into great detail with people about what exactly it is & how it affects someone with it. It is fairly easy for me to talk about it because I can detach myself from it all & become the teacher. It’s easy to list facts & numbers.

Now where it gets tricky for me is those uncomfortable questions I mentioned earlier. Like I said the questions about the cancer itself are easy to answer, but when you get into the more personal questions is where I get tripped up.

I had someone ask me not just tonight, but I get this question A LOT… “How do you go on every day?” I always want to look at them & say… “REALLY?” Well let’s see, I get up out of bed everyday take my shower, take care of my kids, husband so on & so on… What do you think I do lie in bed & cry about it? I still have a family & husband to take care of. I still have a life to live. I just have a little obstacle (some days more than others) that gets in the way. I think about it, but I don’t obsess over it all the time.

• How do you handle knowing you are going to die in a few years?

It’s not like I am going to die tomorrow. I don’t dwell on it, if I did I would be a very unhappy person & no one would want to be around me.

• How do your kids handle this?

I dislike this question a lot. My almost 17 year old has full knowledge of what I am dealing with & frankly knows more than I would like her to know. When I was first diagnosed we took her out to a really nice dinner (she was 11 at the time) and we told her over dinner. We told her I had cancer & she asked if I was going to die. I told her not for quite a few years. She said ok and asked if she could have the shrimp. She doesn’t like it when people come over to help. She thinks its charity & she says she’s not a charity case. Other than that I think she handles it pretty well.

The one thing I dislike more than everything else is when people look at me and tell me they know what I am going through. Please don’t compare. If you suffer from an aliment which most of us do. That’s fine you are allowed to be sick to have a bad day/week/month. You are allowed to feel crummy & sick. I will not take that right from anyone, but please don’t tell me you know how I feel. Don’t tell me you know what I am going through. Unless what you have is going to kill you please don’t tell me such things.

People are curious by nature and I know that. I don’t mind answering questions from people I encourage it. For me it is the type of question. Questions like the examples I stated kind of put me in a weird place. I never know how to answer. I don’t want to come off sarcastic, but yet I don’t want to sound like I am feeling sorry for myself either. I am just living day by day the best way I know how. I still have a family to raise I still have a husband I need to be there for. I am going on like anyone would. I just have a shorter amount of time, in which get this life done right.