Archive for October, 2012

Out of the fog and into the questioning phase

October 28, 2012

Don’t get me wrong, I love my week of freedom. With the clarity brings many questions as far as my aches and pains. Is this pain cancer or just gas? Is this itchiness a reaction from chemo or a new weird skin disorder? Is the increase in movement causing my new fatigue or is it the cancer? or is it my blood? All these questions just bring more frustration and the desire to have more weeks of freedom. Why is it that I still count down my hours of “acting fine” until the time I can sleep? Is the cancer making me so tired? Is my body still fighting much harder on the inside making me so tired? I can question the questions, but realize that it doesn’t help.

Then, my week “off” proved to be a week of cancer job organizing for the potential visit to Houston.  The main plan involves getting my chemo on Halloween. I am still not sure if I am upset about the timing or the magnitude of what is now involved since I had that bad reaction. Since none of my doctors advised me to stop planning for Houston, I had to organize Alex’s school and schedule which seemed like an easy thing to do. Then, I decided since I would be in Houston, a “second” opinion would be good at MD Anderson. All I can say again is I am glad I am not truly in “crisis” or sick like I was from my cancer because it took me a full week of hours and hours of effort to obtain an appointment. Again, I think of all my grey faced warriors and wonder how the real cancer patients do it?!

Then, comes the potions and pills before the chemo plus the blood test and possible outcomes and transfusions. All this requires tons of planning on my part and tons of follow up. How do people who live with cancer work a “real” job? The planning is not done because once I will be given the “go” for leaving for Houston on the 8th, many other things will have to happen. I never like leaving things for the last minute, but I have no choice. At least, I am somewhat familiar based on the trip to Europe except this flight will require a mask. (flu season) I am reminded by my docs that I am only left with one antibiotic to use which is in the hospital if I get sick again. I get it.

So, back in 2010, I used to have my chemo nesting mode, but now this new “normal” leaves zero nesting time and only truly the focus on the day and what we need to do to make this all happen.

I read a new study that came out about patients who live with cancer should be reminded that there is no cure and chemo is possibly prolonging their life while at the same time causing stress on your body killing the good cells along with the bad. I think these doctors don’t know what they are talking about! Most patients are not in my mode of living with cancer. I know I wouldn’t want to be reminded about the reality. I also know my fellow patients some who are on the pity pot or really do have little time left would rather focus on the day, the now, and the moment. I would rather these doctors focus a study on more important things like nutrition or exercise or even attitude to calculate PFS (progression free survival). We are all different and each have our own method to this madness. There isn’t a right formula as I have adapted mine to meet my goals each time. I do wish I knew a magic formula. Until then I will still follow what I know to be true, live for today since we do not know about tomorrow.

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Never knew how bad I felt until I started feeling better

October 23, 2012

This weekend was a weekend of firsts! It has been over a year that I have been able to put Alex to sleep meaning been awake when we is going to sleep and have a conversation or read together or just hang out! This weekend I was finally able to put Alex to sleep. I noticed the next morning an immediate change in his behavior like a huge weight was lifted off his shoulders. He was bouncing down the stairs. Again, it is always the simple things that go a long way. Plus, I was able to have a full weekend of activities without taking one step forward and five thousand backwards. I realized that I was so sick on our cruise and am surprised I was able to do what I did!

Don’t get me wrong, I didn’t take a magic pill, but now I am able to almost function in a day without a huge catastrophe of my battery life failing me. I admit that this requires more planning on my part and much help from my friends with silly things. It is all worth it for a nightly ritual with Alex.

So, I will make the most of my very first week of freedom in over a year. My chemo hasn’t been kind to my cancer or my body.  Plus, it is our 14 year anniversary on Wednesday. So, my freedom couldn’t have come at a better time. I will enjoy every moment because I forgot what I was missing during my year of fog and fight. I am still fighting, and I think I am winning over my cancer for today. Until tomorrow…….

“You aren’t the typical cancer patient. This is why we like you.” (nurse)

October 19, 2012

I have been thinking a lot about having cancer or living with cancer. Frankly, I am tired of this job. I have been keeping notes on every reaction and documenting all the pills and potions. I have a second binder which is as big as the first one and we are only in October. It is getting blurry and I have not written anything down since last month. Of course, this has caused me many issues, but I am being a rebel against my system. I am not sure this is the logical thing to do, but what is logical for someone to have ongoing chemo since April 2010 or was it May? I was thinking that I don’t want to have this cancer define me, but it does by consuming my every minute. Damn my efficiency! I don’t write things down and I cannot remember as I emerge from my fog. Who suffers? Of course, being a rebel you pay the price. So, I spent a couple days living in the bathroom.

These days I have brought my boys down my crazy path. Alex says he understands, but wishes that I wouldn’t act crazy. Jim just takes a lot of deep breaths and gives me many hugs. I know he wishes this all would stop. I had my breakdowns because who knows what triggers what or why I start thinking a different way. I think it is the frustration of it all. No one can understand what we deal with every day. Some days require so much effort to just walk to the bathroom let alone exit my house. Other days, I have some energy, but it is as if I am one of those electronic games losing power. Unfortunately, I am unaware of the power loss. I used to be better at this. I think since I had been “real” sick and this last chemo that I lost my ability to judge when too much is too much. In some cases, I just have to do what I have to do. In other cases, my desire outweighs my “battery pack”. I was unaware of how bad my last reaction was just like I was unaware of how much energy it required to go to Alex’s school for a mini conference.

I know I am not making much sense these days, but I think it is because I have no clear answer and there are many unknowns.  I had to have a meeting with Alex’s teacher since he explained he had the same level of frustration since the beginning of school. What I did not consider was the logistics of the meeting! Alex informed me that my make up would not really help since I should not look like a clown.  I thought we were meeting in the office, so I planned my walk from the parking lot. As we were speed walking to the teacher’s classroom, I could barely catch my breath or keep up. Luckily, either my cancer look or cancer job has put off my “escort” so he starts on some random subject making no sense to me about birthdays, picking a nose, and camping?! I kept thinking that my chemo fog was back, but I am still unclear. I forget since I have had cancer for so long that it still is like the olden days for some people who used to and still do whisper “cancer” as if it is either contagious or just to frightening to say out loud. I do forget and often joke about things like not breathing which others do not find funny. Our meeting was very special and I tried to maintain a sense of calm as I looked at my notes. I felt like I was a student too. Alex told me before we started that he would bet a zillion dollars that the teacher would say how messy his writing is…Of course, he was right, but I told him that we want solutions. We already know he doesn’t have the best penmanship. I decided to make some requests which did get addressed and others I decided were not worth the energy. I only lost it with a deep breath when a comment was made about Alex’s focus. I had to do the mama bear and say that Alex is the most auditory learner I have ever known who can play music by ear, imitate language or accents, and repeat a phrase said by an announcer from a month ago. I also said and reminded all the participants of this fun meeting that Alex told them he is unlike any 6th grader and has worries very different from the regular 6th grader. We all came back to the topic with somethings unresolved, but Alex said he felt better. I was glad to make this effort, but realized that I needed to take a break before I returned to my car. I decided to visit the office for a rest. While I waited, I watched the 30 odd students enter the office. Some were very well mannered and others were in the “entitled” category which received a very specific look and reaction by those working in the office. You would never notice this look, unless you yourself have done this while dealing with students or kids in the area. While watching all of this, I realized how difficult a day in this place would be. It is a different time combined by where we live that has created this unusual breed of middle school students. I am so impressed when I see well mannered students that I almost come out of my fog completely. I realized that everyone has their “stuff”. My stuff seems worse to me, but it is all relative. I say try to imagine walking a day in someone else’s shoes and you will appreciate your shoes all that more!

I am still entertained by Alex’s middle school stories. If he had free time away from his 30 page grammar packets and tests every day, I would have him write a blog about it. I am sure he would say it would be too embarrassing. Yesterday, I was told that a certain student who will remain nameless has not been wearing underwear for 3 days. Alex explained with a look of horror that this student was sitting his naked behind on the bench when changing for PE. Alex told me, “it wasn’t pretty, mom.” I reminded him not to sit on that bench.

Who knows what a typical cancer patient is…I know I have never wanted to be a typical anyone doing a typical anything. This cancer job proves to be too much some days for many of us. I never like to sit on the pity pot, but I have had my moments this past week. I thought I was losing my sense of humor, but I think it is coming back.  I think I will pick up Alex from piano just so I can hear his fun Spanish song and watch his faces as if he knew what a flamenco dancer would do playing a piano?!

One day at a time…more sunshine and clearer skies ahead are the forecast.

Only the unknown frightens men. But once a man has faced the unknown, that terror becomes the known. Antoine de Saint-Exupery

October 11, 2012

Maybe I had some underlying hint of what was to come. As Jim said in the car, I had never been as anxious and nervous. How could I be nervous since I was armed with the cutest pumpkin cupcakes, yummy cookies, brownies and layer bars. I tried to get into a state of calm, but nothing was working. I knew that my blood counts taken the day before were just 1/10 of a point for the “go zone” for chemo. Who knows if it was the fact that I had been sick since last chemo and did not have the full strength like I usually did.

Traffic was horrible as usual, but we made it in time for delivery of all treats and greeted with friendly smiles and excitement. I did get one of favorite nurses and the top VIP seat with most window view. My weight wasn’t down as much as I thought it would be, so my plan of just eating when I could seemed to be working. Yes, I know I should work harder on that, but last time much effort was spent on getting well.

I guess one hint could have been the IV issue.  Since the first attempt for getting my IV line was not successful, I hoped the second would be. All was ok when we started to try for the other arm. The order was fixed correctly for a reduced dose in order that I can get my next infusion on Oct31st. I met my pod neighbor who has had more breaks with her cancer (years in between) and we both decided costumes are necessary for next infusion on Halloween.

All seemed like we were on tract until the second drug was administered. All of a sudden, I felt a tightness in my chest, heart racing, and was unable to catch my breath. The voice in my head kept telling me to remain calm, but this was unlike anything I felt before. I asked Jim to get the nurse, but instead all the nurses arrived,plus the charge nurse and other doc. They gave me oxygen, a giant boost of Benadryl plus steroids. After some minutes, I gained back my breathing. All nurses and doc remained calm and asked questions which I was unsure I answered. Poor Jim, this was just what he didn’t need to see. The doc told me it would be fine and they were going to try to finish this infusion in 3 hours (instead of the norm 30 minutes), so much for getting out of here early. He also said there were other alternatives if I couldn’t take this. He is the one who tells it like it is, so I felt reassured that he seemed confident and even smiled. I passed out from so much Benadryl and was able to complete the cycle.

In the meantime, I came home to Alex having a minor breakdown and needing me to be there, but I was so drugged that it took everything for me to focus on his concerns. Of course, it was more middle school normal drama along with his continuing saga with one of his teachers. I told him not to worry and as soon a I was out of my fog, we could have a meeting at school. He seemed fine with the plan. Always good to have a plan for him (and for me too).

Today, I woke up to the fog and feeling very drugged. I know it will pass, but now have to make efforts for getting my shot at my internist today. Plus, the next new plan in 3 weeks which include most likely a transfusion and much drugs to get through next cycle. Plus, my main doc is out of town working on funding for research, so how can I bug him now? Just one day at a time. Hoping to think or find something fun for the weekend for my boys to do….if anyone has any fun ideas, just email me.

Always excitement, never a dull moment. The thunder and rain is a nice change from the heat. I will be enjoying it from my bed with a few mindless tv shows all the time taking my anti nausea pills. Enjoy your day and try to avoid the crazy drivers who drive 15 mph in the rain.

 

Blood work no bueno

October 2, 2012

This real sick thing is getting to be a bit frustrating for all of us. I was supposed to get the vaccine if my blood work was okay, but now realizing with some help from my Hoag buddies that the chemo trio is really eating all my good blood. I am feeling a bit better every day, but who knew that real illness could be so inconvenient.  I am wiped out during the week I was supposed to be getting stronger. I am thinking that with this flu season being so bad (according to all docs) that I must have my chemo dosage reduced in order for me to get through all the cycles. Alex is a walking germ magnet. With Alex’s lovely description of a band member with “boogers” blowing his trumpet, I am thinking in Middle School students go to school no matter what is ailing them. (unless really bad stomach virus)

So, now I have to most likely have blood taken next week before chemo (really don’t want to think that in a week I will have chemo again). This way if I need another transfusion, I can get it and be “fake” strong enough for my chemo.

All is too annoying for words and don’t get me going on my $40K claim for one time chemo! I am thankful that our insurance covers this, but $20K for each drug seems a bit ridiculous for  life saving drugs. Got to wonder what is in it?! I am not wondering too hard as long as it works.

So, back to the resting phase I go….