Archive for September, 2012

In the words of Pink-“Just when I think it can’t get worse, I had a sh-t day (no!) You had a sh-t day (no!), we’ve had a sh-t day (no!)”

September 28, 2012

First there was the chemo fog, then came the blood transfusion, and now the infection. Oh, plus the cancellation of my vaccine at Scripps because my blood counts were too low. Then, came the breathing issues and threats to go to the hospital. Almost went to the hospital, but a quick save from my great internist calling in some last minute drugs to avoid the visit to the hospital. Yes, I have never been this non cancer sick in FOREVER! Drugs starting to kick in, but back to the bed once again. So much for my weeks free! I am annoyed with the situation as my docs tell me that my body has weakened from the ongoing chemo. I have learned that it is a fine line balance between the toxicity of the drugs and killing a patient. I keep joking that my insides are that of a 90 year old. I am tired, but thankful. My rock star husband and Alex keep me smiling  and calm even when I only had air to squeak out few words.  Alex’s stories from school keep me entertained, shocked, and curious to hear more, but wondering how that “machine” of middle school works. I love hearing about those teachers who still make learning fun and teachers who still use handouts from 1950. Especially shocking are the locker room stories which I must have blocked out from my own middle school days.

So, all my great plans of going for walks with friends or hanging with friends were postponed to another week. There is always tomorrow, and again I am reminded how important today is. I am thankful that I am breathing easier and healing even if it is slow. Baby steps…

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“Gray skies are gonna clear up. Put on a happy face…”

September 18, 2012

Yes, I am in the time warp of chemo. Luckily, the fog has cleared just enough for me to realize that tomorrow is Alex’s birthday! Thank goodness for online shopping and advance planning (or at least a little bit of advance planning)!

When I went for my chemo way back last Wednesday, I had a “reserved” seat. I was also told that they were behind from Labor day. Who knew? (It was the 12th?!) I had a nurse who I hadn’t seen in a while and he was trained by the best, so he is VERY detail oriented. We had the ongoing joke that knowing my body, my blood would just be one point below the limit of when they could give me chemo. Not sure if these are guidelines set by insurance or doctors. Of course, my numbers came back ONE POINT ABOVE the limit. So, I had my chemo or so it began. I was already tired of sitting there, so I thought that we could cut off some minutes here and there. I didn’t know what I was thinking being my bossy fake doctor self, but I nearly vomited because of my error. All was fixed thanks to my nurse. I didn’t think things through enough as Alex was on his own for all his before school, after school, and snacks. I did forget that this chemo takes a long time and didn’t plan for his dinner. Luckily, we came home just in time.

I managed to see both doctors while at chemo and told me not to get excited too fast as we all know there are ups and downs with cancer treatment. (Oh I hardly know?!)  One doctor who has no sugar coating to his explanation said I had 2 choices either stay on chemo or not live.  I asked him if he thought I would get a break of any days or weeks. He said that I needed a break even if it was days, weeks, or months. He told me that my body needs a rest from chemo or the chemo will kill me. Good to know and I have been saying this, but somehow no one listened or maybe they knew all along. We all negotiated this chemo since they don’t want me to get in the habit of getting blood transfusions. I will now get my chemo once every 4 weeks instead of once every 3 weeks. This is an improvement since I was just feeling good the day before I went for chemo. The only other option is to reduce the amount of chemo which they don’t want to do since they want my tumor marker to get in a range where I can digest my food and not feel after eating a spoonful that I have eaten a 8 course meal. I will go and get a blood transfusion on Thursday to get ahead of this “game”.

So, I had to get the shot which increases the white cells, so I can have an immune system. This shot causes so much pain and between my pain of chemo, it is not a fun deal. I don’t know what happened in the days since my chemo, but I remember a lot of moaning, groaning, and crying with Jim rubbing my back. I also remember Alex helping me back to bed, so who knows what happened with these days passing. I am finally at some moments of clarity, but it is amazing how the mind just fogs up. As usual, I lost the words that are so familiar that we play games of charades daily without me realizing the game. Of course, for more fun and excitement, my hair is raining on my ipad which is really annoying. I am afraid to scratch my head or my eyebrows for fear the rain showers will begin.  Honestly, I know I have a good wig, but I am not ready for it and not ready to add that to my list of things to do.  I am thrilled that my foot syndrome of the hand and foot syndrome is gone. I just wish my digestion and eating was a bit easier.

I am looking forward to more fog clearing and sunny skies ahead.

The Unknown…to have chemo or not that is the question

September 12, 2012

There is so much unknown with cancer which is why I choose to only focus on today’s cancer job or tomorrow. If tomorrow brings with it too much unknown, I choose to ignore the reality of it and focus on anything but tomorrow. This makes it difficult for everyone around me (including Alex who has a birthday next week). I am just not there yet. I was never one for last minute is the best minute, but life has become the “what are we doing now, this minute”.  On Monday, my platelets were low enough for a transfusion and for reasons too many to mention, my doctor felt that it was better to wait and see if my body would kick in and do some magic. I have never been a believer of magic, but I am starting to whisper little magic spells to my body hoping it hears me. To mentally prepare for chemo is one thing, but to do the drug prep not once, but twice does annoy me. I can think through all the scenarios about postponement or not of the chemo and will this work or if I wait will I be in pain again or if I have to come back will I get the best nurse or best seat or willl I have to rearrange all the Alex pick up and taking plans again….but as I type the thoughts are in and out of my mind. Since my memory and focus is not what it used to be, this works for me.

So, off I go to UCLA and now my focus is what fun shoes to wear, plus attempting to remember all those drugs to bring. I will wait and see.

 

“When you’re trying to motivate yourself, appreciate the fact that you’re even thinking about making a change. And as you move forward allow yourself to be good enough.” Alice Domar

September 7, 2012

This week was difficult for all of us in many different ways. As Alex began middle school, he faced so many new and exciting challenges along with trying to balance what was happening at home. His first day went so well that I could hardly imagine what happened yesterday. My new side effects are hard to hide despite my thinking I am hiding what I am truly  feeling and thinking. The emotion is seeping through the foundation of our home.

The chemo is eating my blood cells, but I managed to have enough of an immune system to exit my house. The unfortunate issue is not having enough platelets, so I made my promises to Hoag Irvine and my team of docs that I would return on Monday to see if my body kicked into gear or if I will need a blood transfusion. The other side effects are now clearer than ever as my focus is still cloudy, I seem to be allergic to one of these chemo drugs (one of them I was allergic to in 2010, but unless I was convulsing on the ground, docs felt that all is fine), and I am back to my hair “situation”. I think the fog is what is so annoying to me the most. I do have moments of clarity, but I am really only able to do one thing at a time. Alex’s fast forward thinking is too much for me to process and I know this is frustrating for him as much as it is for me. So, while I thought picking up a few items from a store would be easy, it became so mentally exhausting that I felt as if I was doing calculus all morning and juggling  10 balls at the same time.  My other issue being allergic to the chemo  is that I am unable to taste my food and to smell my food. Who said we eat with our eyes…well, now I am finding this more important. Also, now that I have a 90 year old digestive system which is fighting with my cancer in the same space, I can only eat bird meals. I learned my lesson on that one. One night it seemed like I had swallowed a bowling ball.  Lastly, my hair situation… back to the prepubescent days and now my head on my hair is thinning like a 90 year old man. It is not raining hair and my eyebrows remain for the time being. They tell me after the next cycle, hair will be raining again. It is so hot here now that I am hoping to have my patchy short hair until the rain begins.

All this happening while not being at my strongest and sleep is difficult to come by as well. Alex had an incredibly successful day 1, but day 2 came with a phone call from him with only a couple of hours left of school. He followed the procedure that we had established with the school and went to the office to call me. When I heard the worry in his voice, I tried so hard to be cheerful and positive that he had asked what was wrong with my voice. All he could tell me was that he was worried and overwhelmed. He seemed better once we talked for a few minutes, but I hung up feeling angry and frustrated. I wanted him only to have a normalish middle school start.

Today is a new day and hoping it will be better. Off to talk to my nurse about my series of side effects…have a wonderful weekend. Thinking this weekend will be better than last and I will get out and about.

Late night talks….

September 4, 2012

I was thrilled to exit our house on Sunday for a visit to Laguna Beach. I was even happier to walk along the beach and not be around the major crowds. As it was my first exit, I was exhausted and slept too much of the Labor day away. We did manage to get in a few talks about middle school and reminding Alex that all the 6th graders are new at this. What I didn’t expect is the late night talks of what was really on Alex’s mind. He always reminds me that his 6th grade “brain is not what other 6th grade brains think about”…I usually take this as his big thoughts about what he has seen on the cruise only to have the reality of the situation once again brought to the surface. The conversation started with, “when I am 40, you will be how old…when I am 20, you will be how old…” All of this really was asking, “will you be okay Mom?”. After this back and forth and a few mention of the 90 year old relatives he had met, he proceeded with, “do you know anyone who has survived your exact same cancers?”. I am never good at these questions and trying to remain positive and my good cheerleader self responded that I will do everything I can to be here for him. He didn’t really like that answer and answered himself, “so, you don’t know anyone who survived your cancers?”. As my chemo brain was still not fully thinking, I tried to change the subject only to get him increasingly frustrated. This is when I usually call Jim to the rescue to put into words what Alex is thinking and to allow him to vent his feelings without having me cry in front of him.  This worked for about 5 minutes. Then, Alex walked into our room and said, “I cannot stop crying because I am so worried about you.” It is all completely understood as we are all feeling the same way, but we are adults and choose to focus on the positive and the small baby steps. So, while most of the 6th graders are thinking about friends, new school, where to find the classes, Alex has a different focus. This is why it takes a village. This is why our every day is so different. So much unknown exists for the middle school student, but with Alex the unknown is greater. Our goal is always to maintain as much “normalcy” as possible while always focusing on the positive. This new chemo trio does not help this goal as Alex cannot help but to see me in bed.  With school starting, this new routine may be helpful for the avoidance of seeing mom in bed for a week. We will take baby steps in so many ways and I will continue to focus on day by day. Tomorrow is again another blood test…and the first day of middle school for Alex. Thinking positive thoughts for both!

“Show kindness whenever possible. Show it to the people in front of you, the people coming up behind you, and the people with whom you are running neck and neck. It will vastly improve the quality of your own life, the lives of others, and the state of the world.” — Ann Patchett

September 1, 2012

I am now out of the fog, but with a new set of side effects. I am super glad to be out of the fog, but still have that “what was I just doing?” problem. I also have a whole set of new issues of lowering my expectations and plans for myself. I love looking at the book my dad made for me from the cruise. It seems like a year ago instead of just a month or so. I am so proud of myself that I did the trip and saw all that I did (never missing a minute!).

Even though I lost a week of time, I was happy that it was summer.  Each day I had a grand plan of going for a walk or taking a shower or getting out of bed. Some days, it happened and some days not a lot happened. So, this is a new phase and I am taking things minute by minute. I cheer my little accomplishments whether it is walking downstairs or taking a shower. Each day, things improve and I must focus on the little things. Unfortunately, gone is the day of multi tasking and telling me a lot of information at once. I am moving at a different pace and now accept it even though it is frustrating at times. I am thankful for those of you who either are good mind readers or just remember that I told you last week what I needed even though I have forgotten.  I am thankful to all the sunshine you have brought me during my foggy and cloudy days. I really do appreciate all the small tokens or gestures of kindness. I appreciate anyone who just solves my problem of the minute even though you may not even see it as a problem.  Often the small things now turn into big things for me. This will change too as my I find the rhythm of this new chemo trio. I am still on loose footing and not quite finding it yet. I have the intention of exiting my house this weekend, but I cannot say exactly when that will happen. Until then, I am walking up and down the stairs and I did shower today. One day at a time. Enjoy yours.