Archive for January, 2011

Cancer for dummies? Who knew!

January 30, 2011

I guess I never thought to look for books in the “Dummie” series on cancer. There should really be a book stating you cannot be dumb and have cancer or cancer isn’t for dummies. Between the shots, pills, appointments, coordinating doctors, you almost have to make this a job which I would rather not. This book, “Life Over Cancer” wants you to set up team leads for each specialized area. Who wants to do that? Oh, “hi friend, could you handle all my medicines, blood tests, insurance issues?” It sure is a “fun” job paying nothing with little benefit, but ongoing frustration. For my job descriptions, it would list the duration of the job is for almost 2 years.I am sure that would get a lot of takers.  So, back to reality and I will attempt to focus on this as much as I feel is necessary. I cannot consume myself with all the details, but just the important ones. I guess this is my way of living with this situation. Unfortunately, I make mistakes along the way and forget the reality and live in my dream world.  When the reality smacks me in the face, it hurts. I hate to give in, I hate to admit that I am being treated for stage IV trifecta cancers.

This leads me to my recent reality of having 3 appointments at UCLA in February which starts next week. This also brings me to my hair reality, no not the musical which we are seeing tonight. My hair is growing back, but there are still blank patches. I am thrilled to have eyelashes and eyebrows. I still need the wig because I don’t want to look like a person with cancer and I don’t want to see myself as a person with cancer. So, I continue with my own reality. I am often thinking of the closet as the time gets nearer and wonder if other countries have chemo closets. All the more reason to travel the world and find out. Of course, my travels should focus on countries that have indoor plumbing, good food, and good shopping.  I also am thinking of bringing a 4-pack to the closet next week. No, not of beer, but of Charmin. When I saw the Lysol auto soap dispenser at Costco, I was thinking of that being a Valentine’s gift for the closet. I know I should stick with candy, so I can get the upgrade to the overflow closet.  Also, since my bruising just disappeared from my last treatment, I am definitely going with the “say no” to my last nurse.  All in all the month of January flew by, so I am happy to have more treatments down and less to go, but I am still over it.  I cannot help myself. I wrote a letter to my old gynecologist who did not make any errors except that she did not listen to me and she could have done better.  Jim said that sadly my letter will only make her think of the possibility of a lawsuit, but I wanted to tell her how I felt especially since I have friends still under her care. I also go with the motto that if it makes me feel better and doesn’t really hurt anyone, then go for it. I wrote it for the reason that I want her to want to be a better doctor and take the extra five minutes. I  wanted to remind her about what happened. I cannot make her care more, but possibly it would make her think and even if it is about a potential lawsuit, she is thinking.  As for me, I will do more thinking and more taking time for connecting with friends. I will do less of my cancer job. The job posting is still open and I prefer to live my life and continue to make mistakes along the way. Happy February!

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The hair, to wear or not to wear, that was the question….

January 23, 2011

So, I had been putting off this great gift card I had for getting a facial. This was a 10 step process. I went to the place and discussed their products hoping it would be some type of toxic mess, so I could not risk doing a facial. Of course, they informed me they had all natural products. Then, uh oh, I know someone who works there and it would be too awkward to have any treatment in the building with that person working there…of course, they suggested a date when that person was not working. (damn!) Then, came the fact of my skin shedding (the side effect of the medication) and it would be terrible with all these natural ingredients. Right? Nope, they felt it could happily help and even suggested I bought “stuff” in the shop with my gift card instead of the facial. So, I gave into the facial. This presented my next problem of wearing the hair, taking off the hair, bringing the styrofoam head, bringing a scarf, wearing the scarf, just too many steps to remember that I could have easily backed out of this “treat”. When I figured it all out, there was a call that my aesthetician was going on vacation and there was a substitute. This could be my ticket out of the facial. Instead, I gave into the process and packed up all my tools ready for an awkward moment. After timing my entrance to the changing area (area clear of any people or any people I know), I quickly took off the hair and wrapped my head in a scarf. This process was too quick and my hair flew out of my hand onto the floor looking like a dead animal. Geez, I had to save it quick before someone would either swat it, step on it, or scream. I tossed it into the locker and hung it almost safely on the hook. While debating of how much clothing to keep on (bra off or on, pants off or on), I took of my clothes while wrapping myself into the robe. I became so entangled, I looked like a manequin with clothes hanging on the wrong parts and the robe twisted along with the regular clothes. You would think that I never left my house. After my Houdini escape, I was sweating like I worked out for 30 minutes at a face pace run. I attempted to pour myself some water with some vanilla green tea drops careful not to put the whole dropper or I would be wired beyond belief and unable to take my plunge into the facial process. I met my new aesthetician who was too cute for words. She put me at ease and commented on the hair wrap. I had a bit of diarrhea of the mouth and told her about all my ailments in about 3 minutes. Then, she told me about her brother who lost his battle with cancer. To think about all my fears and time wasted about this process and it magically worked itself out. She was calm, gentle, reassuring, and my facial was the most relaxing hour I had in a long time.

Of course, all was relaxation went out the window with Alex eating chocolate cake with almond butter and having a horrible allergic reaction. He is fine now, but we had no sleep last night and were upset about the entire episode. Poor Alex! Again, a reminder to not get caught up in the little stuff and make the most of every moment. What was relaxing in one moment, turned to be a stress moment and now we are back to enjoying the sunshine. Get out and enjoy.  I will enjoy the fact that every day for me is a good hair day!

“Remember what you are fighting for: today, spend time with your loved ones.” Vickie Girard

January 17, 2011

Yesterday, I was talking to a friend about my idea for today which was the beach clean up at Salt Creek Beach. She said, “do you really feel good enough to do that? Don’t push yourself.” I am always about the push when I can and I know when to wave the white flag (well, almost). So, this morning we were off to clean up Salt Creek Beach. I felt that I had to do this. This was the place that I took my first steps with my sister (or should I say “shuffles”) after my surgery. This is the beach that I walked with my mom and dad when they were here for so many months, so I could get some air and attempt to avoid my feeling of nausea for some moments.  This was the view that we had from the summer house in the clouds in Laguna. This is the place that Alex and I went on a nature walk before cancer. Now, this is the place that Jim, Alex, and I come to look for the squirrels in “squirrel city” or just look for dolphins. The ranger informed us that the beach was very clean and they really need “us” in the summer. I would like to do that, but we were there now and I was determined to pick up as many cigarettes or trash as possible for as long as I could.  We found a turkey baster bulb-not sure what that would be used for at the beach? Even better was my walk with a long time friend who I miss seeing like we used to when our kids were small and in preschool. That seems so long ago…I guess it was…. I did manage to walk and talk and pick up trash. I enjoyed the air and felt pretty good until it was time to listen to my body and go home. It felt good for so many reasons that I cannot even name. The ocean air, the sound of the waves, friends, family, cleaning the beach and the warm breeze-who could ask for anything more!

I feel pretty good today and love this great weather. Enjoying less drugs this time around  (sounds strange to say) and it really makes a difference for me. I am so thankful for today.

“Success is sometimes just getting out of bed. Success is sometimes staying in bed. Success is surviving; you are surviving; you are a success.” Vickie Girard

January 14, 2011

Today, I am a combination of getting out of bed just to take Alex to school and going back to bed. So, I am double the fun of success! Oh, yesterday was chemo closet gone crazy. Thankfully, Margie was there and brought her sunshine, smile, and laughter because I was like a flickering candle on the brink of being blown out! Unfortunately, the other upgrade room was not available,and I should have known when I had to carry my own urine cup in a baggie that something was strange. I put it in my large bag since it was glowing yellow.  The waiting room was filled and showed no signs of improved decor,and I did meet a woman in her late 50’s who had 2 of the cancers I have and also stage IV. She is small like me and told me that this office has the best doctors as she has been coming for 20 years. Her comment was if I am still around, you will be around for a long time too. She also had to yell about how gorgeous my hair is and said repeatedly, “cannot believe that is a wig and you look beautiful.” Not sure if this set the tone for the strange vibes that came later with the many bald headed grey faced women. She also told me she eats 1lb of dark chocolate a day. I almost had a poop attack on the spot thinking about that much chocolate.

I was greeted by a nurse that I never saw before who put me in a room, so the doctor could see me. I am not sure if my anxiousness caused my blood pressure to sky rocket, but I had little hope of going to the other room. There is one closet visitor that my cousin, mom, and I have met numerous times and try to avoid her if possible. She is not the person you want to spend hours next to almost holding her hand or mine?! While waiting for a chair (bad sign), my nurse (new) wanted to start my IV. I asked her about the drip (slow drip for me) and the amount. Oops, here we go again…after some back and forth, we got it right. Lo’ and behold a chair is available. I actually had a choice which luckily Margie had her telepathic powers going and placed me in the middle facing the nurse station instead of the corner next to the the closet visitor I wanted to avoid. My favorite nurses came over and asked if they could tell their patients that my hair was a wig and if they could tell them about my trifecta and stage IV. Of course, I said yes since I know my “story” will make anyone else with cancer feel better. They also said, “you always come with a smile, so we want to give them hope”. I looked around at the many grey faces and asked if there are a lot of newbies and they both said almost the whole room. Not sure if this was the problem or my discovery of my not so friendly nurse was the issue, but the doctors were running (seriously running) and one usually does not run at all for anyone. It was a strange sight that even my river dance with boots would not help. Margie and I tried to look at my machine since I was convinced that the flow was too fast as I was way too nauseous and a bit dizzy. That has not happened for a long time. With no chairs left and standing room only, I had to use the restroom. While Margie was picking up trash, I decided to get more toilet paper. Yes, we made ourselves at home in hopes that it would help. That closet is toxic all the way around. I asked for my blood work results 4 times until my doctor finally got them for me. When we again tried to see the flow, she said it was fine, but I think I figured out later based on the time I got done that she cut 10 minutes off each drug making it just slightly faster. Slightly faster is not good. Margie and I proceeded to laugh and do our own private eye rolls. The worse was when we witnessed our favorite nurse put her back out to help a patient and then, try to help me, but my nurse barked at her. Very strange scene. With the changing of the chairs, the new patient told me that she had to wait 2 hours. Her appointment was at 9:30am. Thank goodness I had made mine earlier now or I would have been home by 8pm. No music but constant beeps from the IV machines, no sunlight, no air, and I just wanted out of there. I even had to eat something in the chair since I thought it may help.  All in all, it wasn’t the worst of times or the best of times. I did get my blood work which I looked at in the car. All the numbers are a bit messed up.

When I got home, I was wiped out and ate little food and took by blood results with my ipad to do some research. Hmmm, it looks like I have a UTI, but no one noticed. The more I thought about the pain I had been having, I thought that I have a UTI. So, instead of sleeping, I drank 4 glasses of water and attempted to sleep on and off. This morning, I saw my internist who said most of my blood counts were to be expected with my treatment and yes, I do have a UTI. So, back in bed I go until this afternoon.

Hope to enjoy the sunshine this weekend! Hopefully, for all you winter people, there is some sunshine with that snow!

 

Pity party over and off to the closet tomorrow….

January 13, 2011

Some of you have been witness to my pity party and I do apologize. It just hit me and I could not stop the tears. I know this required some of you to put on your sunglasses at pick up and/or listen to me on the phone sob and not get words out that made any sense. Yes, January is a time to reflect back on the prior year, but my reflecting was a bit too much. I never like to dwell, but somehow the year just blinked away. Then, I was attempting to think of 2011 and wham, what are the months ahead filled with? More closet visits.  I could not help it. I was and am over it, but I am reminded of the alternative or think about children who have cancer and I am done with my pity party. The thing is that we all have “stuff”. These first weeks of January have been filled with conversations with friends, acquaintances, or even grocery clerks, pharmacists, bank tellers or other random people all who face a variety of medical issues themselves. So much “stuff” and it surprises me that most people I encounter just take it all so lightly or laugh it off. I am usually the one laughing too. Today, I was told that I am the best “faker” that people have ever met. I guess it is a facade at times, but I think there is no other way to deal with it. Who wants to be around someone crying all the time? Who wants to be around the “Debby downer”? I have seen those faces in the closet and always try even harder to make them smile with my stories about my hair issues or medications or telling my doctor to change his glasses to a more fashionable pair or just show and tell with my ipad like I work at the Apple store.  I know if I am over hearing about my cancer, talking about the cancer, talking about the meds, the blood issues, my own private  pharmacy, the treatments, and the treatments, then you must be over it too. Again, I remind myself to just focus on today and the moment.

BUT, I cannot help myself to wish for the upgraded closet tomorrow. There is no place like the sunny upgraded closet. It would just make things a little bit easier. On the other hand, what will be, will be and if I am in the ole’ stinky closet, then there is a reason and I will unplug myself and do some magic. I am sure the ole’ closet would love to see me do a river dance in my new boots? Okay, maybe just some demolition IV machine derby? It is so crowded in there, it would make for some entertainment. I would promise to make sure to avoid all those on heavy doses of Ativan.

So, with my recent discovery on Facebook news that my babysitter was vomitosis today, I had to seek help from my friends who were telepathic and phoned just at the moment that I thought to myself (me with vomit phobia and cancer treatment should seek alternative babysitting asap) that I better plan before the drugs take effect or I will be sending texts to Alex’s Principal asking him to babysit. I also decided that food is not a priority since my stomach is so bad now. This too will pass. Off I go to sleep my medicated sleep and have no memory of a dream, but that doesn’t mean I am not dreaming because I do, and I am dreaming of a month without the closet. One more down……….

 

“Then give to the world the best you have, and the best will come back to you.” — Madeline Bridges

January 4, 2011

Happy 2011! I still cannot believe 2010 ended and I really cannot believe the year I had! It still surprises me when I think of all my family has gone through! I still cannot believe it!  After this last treatment, I had a special stomach issue to add to my new list of ailments. You just never know what will happen and the doctors really don’t know. It is always when I am starting to feel like my old/new self that I have to go next week for another treatment.  I am hoping that I get the upgrade again. I did get a Happy New Year email from one of my doctors who thinks we should try to reduce my steroids prior to treatment. Yipee! I hope this plan works. Those steroids are just terrible and make me more crazy than I already am! As we get back to our old routines of lunches, school, driving from place to place, let’s try in 2011 to be kind to others…really, I am serious. It may sound simple, but we do get caught up in our routines and some of us are great at the kindness mode, but we see many who are not even close to being a bit kind. So, let’s make up for all those people who find it impossible to face the kindness challenge. We all know who these people are-so why are they driving into the exit at school AND parking in a staff spot? Why can’t they stop when you walk in the crosswalk? Why can’t they smile when their kids get into their car? Why are they yelling? You get the picture…let’s do it…kindness all around! Happy 2011! This has GOT to be a better year, right?