Archive for October, 2010

Aloha!

October 29, 2010

Maui could not be better even with rain came rainbows! The air is so magical and healing here. I just wish we could stay for a month. We have been doing everything and anything and laughing, smiling all the way. We have been celebrating our anniversary every day! Nothing is better than family time. We definitely hit the symptoms with a sledgehammer of drugs, so I was fine but very drugged for some days. It is better than any side effect! At least for next time, there will be a lesser drug plan, so I can see the daylight earlier rather than later. Looking forward to enjoying the remaining days in Maui! Just thought I would post a note so you would know how much we are ALL enjoying this and that everything is going, going, going, Aloha!

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“Each morning when I open my eyes I say to myself: I, not events, have the power to make me happy or unhappy today. I can choose which it shall be. Yesterday is dead, tomorrow hasn’t arrived yet. I have just one day, today, and I’m going to be happy in it.” Groucho Marx

October 23, 2010

Yesterday, was standing room only in the chemo closet. Thank goodness I wasn’t a minute late or I would have been sitting in a folding chair. Was it a 2 for one special? Or were people trying to get their chemo in before Halloween? It wasn’t a pretty picture, but at least it did not smell that bad. There was only one nurse for the entire closet. There was my friend from last time who ran out of the closet waving for pain meds, but it took a lot of waving to get the drugs. He was the only one making me laugh besides my cousin Margie and he was in pain. He has a great attitude and told me all about his way of thinking. He convinced me to avoid really looking around the closet of people because it will really depress you. I got the last chair and it was what I call the Alice and Wonderland chair (not to be confused with Alice in Wonderland because the closet is no wonderland). This is more the sinking in the chair never to get out unless you have a lift out. It is better than the eject chair which basically kicks you out of the chair. The wonderland part is more about my body being a wonderland similar to the song by John Mayer.  At least, a relaxing thought for my avoidance of all grey, bald, smileless people in the closet. Of course, things turned a bit worse when they were out of soap, paper towels, and toilet paper. Being the only mobile one who was able to go to the toilet and not have a “crisis”, I became maintenance for the day, but I did not clean the toilet, just re-stocked. With the addition of the pre-meds, I was there longer than I wanted to be…especially when I encountered some of the people from my day of over medicated and chemo while texting incidents. Of course, they reminded me how out of it I was…one told me that her daughter was very concerned.  So as for tonight, I do not recommend doing a chemo closet visit prior to vacation. Things took me a lot longer to do today and my mind is fuzzy, but hey, I am not itching. So, in honor of the musical South Pacific or heading towards it, I am going to wash that chemo right off of my body (not my hair since it is still sprouting). Aloha! I will dream of tropical drinks, floral breezes, and the three R’s, Relax, Refresh, and Rest!

Mascara here I come, well, almost!

October 17, 2010

I am seeing the sprouts of potential eye lashes. They are far from being lashes, but it is nice to see something other than the naked eye. Plus, my brows have sprouts too. My only complaint is the sprouts on the head are so ugly looking and are growing back in a strange pattern. You would think that after this, cancer chemo patients would get a free pass to the Bosley hair clinic or would automatically get the hair color, texture, style of their choice. It could come in a pill form since the iv is too much.  At this rate, I look forward to my halfway mark in February 2011 and am thinking that I will have lush nice texture sprouts versus what is happening on the head. I know it is bad since Alex has this look he gives me when he sees it and says, “it will grow back soon Mommy”. I hate to tell him that this is the grow back. All I know is that when the eye lashes grow back, I will be applying many layers of mascara and never curse mascara again!

With Thursday coming up and now my short visit turning into a longer visit with the pre-drugs, I am doing a little dancing, a little praying, a little singing, a little of anything, that this plan works as I would rather not take steroids and want to be itch and swollen free during my flight to Maui. I will definitely do what I have to, but I am also bringing some dark sunglasses in case I have to witness the “yech”  in the closet again, so maybe I will not have to see so clearly. I will also bring several small bottles of perfume to sniff. Plus, eating is a must BEFORE the visit to the closet.  I am definitely focused on the days instead of the weeks ahead. While it is raining in So Cal (or is this spit or mist), I will enjoy the coolness of the air before the warm tropical breezes of Maui!

I am the mom of that lizard baby!

October 11, 2010

It is now confirmed with the scaling skin on my hands and feet that the lizard baby was mine! This allergic reaction or whatever it is called depending on which of my doctors you talk to is just delightful. I will just add this to my list of weird ailments. Of course, my itching and swelling took 3 days of steroids to start diminishing. After finishing my steroids, I am only left with the scales. (okay, it is just dry peeling skin) We were waiting to hear from the team at UCLA what the plan would be and they decided that I should definitely continue, but do the pre-drugs before the infusion. Hmmm…I never understand why they did not give those to me, but things are like this. Oh, you are really really nauseous, then we give you a pill. Oh, you have a rash on your body, guess we will give you those meds before your treatment next time. No one really knows, but this is what we are going to try since I did not have a rash before….AND I cannot be on a plane to Maui itching for 5 hours. Yes, the countdown begins for Maui. In just 2 weeks, I will be breathing that clean floral air and really doing nothing. It is strange that I used to run around like a crazy person trying to get things done, but instead I seem to get barely anything done these days.  My list gets longer and I am focused on the every day tasks of getting myself ready to exit the house and being with Jim and Alex. I don’t really want to stress myself out, so I ignore the list as it continues to grow. Who knows if it is important stuff because I really don’t look at it much. I just quickly add another item without really looking at the items above…not sure how this will all end up. When you end up with weird ailments, the simple things become important like tasting your food. I still cannot taste my food and I think the steroids did not help. Yesterday, I enjoyed just walking along the beach with Alex and Jim and feeling that very cold Pacific Ocean on my feet. So, I think if  “the list” was important, someone would be calling me to remind me about something, right? Otherwise, it will all get done some day!

The 7 day itch?

October 5, 2010

All weekend long I was trying not to itch this rash, but in my sleep I had no control. Sleep became more difficult and benadryl did not do anything, so Monday I called all my doctors and my male nurse. Of course, my male nurse told me to see the doctor. The rash was creeping up my legs and arms and wasn’t pretty. I went to my local doctor and she called UCLA as I was sitting there. Oh, yes, this is an auto-immune response to my chemo drug. Oh great! I decided not to panic and just focus on not scratching. I was then told that nothing will help, but steroids which I did not want to take, but after the disgusting description of what this type of rash would do, I chose to take the steroids. After many a phone calls with my doctor team, they had to tell me that this was extremely rare. My local doctor had taken photos to send to UCLA via email. If I would have known, maybe a manicure/pedicure would have been a better sight for them. So, I am still itchy and it is a tiny bit better. I was so happy to not have the shot and bad nausea, but I did not think I would have to trade it for an itchy rash. My doctor reminded me one day at a time, but I had to think that I cannot be on steroids for a year. It just figures. No hair and then, I would have chest hair and a mustache? This definitely does not seem to be right. Since the rash is on the soles of my feet, I am just hoping that clears up fast so I can stop looking like a 100 year old walking. Instead, I look forward to going to Maui itch-free and without facial hair and a deep voice!

Chemo Closet stinks…literally!

October 2, 2010

Ooh, never before have I smelled such a smell.  I should have known from a conversation I had with a new patient who almost ran out of the closet to where I was waiting in the waiting area. The nurse was telling him to sit down and he asked me 3 times if he looked grey or bad or “not right”. After several times of having the nurse tell him to come back to the closet and he kept refusing, I should have known that there was something not so special in the closet today. He was chanting, “I am going to beat this” . As  he walked out,  I told him he would since he seemed pretty feisty! I did enjoy my drive with a friend who made the drive go very quickly! The closet was filled with a stench that made me want to be sick and the visual was to match. There were hairless women who all appeared to be very grey and some men too. Luckily there were 2 chairs empty on the other side of the bathroom which “splits” the closet in two. This way, I did not have to look at the depressing visual even though I was still smelling the smell. Like the man I met outside in the waiting room, I started chanting to myself too and thought there are those who are worse off than me. I was the only one who could walk to the bathroom fully erect. Most of these people were not old, but in such frail health. My chanting stopped once the nurse told me that my platelets were NORMAL! So, my red count is not, but it will be eventually. Things got much better when my cousin, Margie arrived after searching all closets for me. We laughed a lot and before we knew it, it was over. Unfortunately, the smell still stayed with me. I was happy to have a short infusion and they told me that I could expect to be tired and maybe a little bit nauseous, but nothing like before. They were right except that I have no appetite and would not call it full nausea. I am fine with this. I also learned that the lovely rash I have on my body is from the chemo. It will eventually go away. Good to know! So, lesson learned again about feeling good to feel as good as I feel?! I know I can do this and I will not let the “stinks” get me down.