Monthly Archives: July 2010

Positive View of Side Effect

I had been getting emotionally doubtful of Avastin. The side effects I was getting at the beginning are not obvious now. Where were they? Was it not killing cancer cells?

Then, I am comforted by a huge nosebleed. A common side effect.

Positive Side Effect

I have been off Tarceva since Friday due to the toosh issues. While it tortures your skin, for some reason, many people have thicker eye lashes. I realized today, mine don’t look quite so dramatic. Interesting. Not worth the skin issues nor diarrhea, but interesting.

I restarted tonight, so I don’t think I’ll start using mascara any time soon.

Things I Am Not Ready to Do.

There is a bad movie, PS I Love You. The movie wins me over with the Irish effect. I am not a Hilary Swank fan. Gerard Butler yes. With a fake Irish accent, even more. So Butler is the husband that dies young. In the year following his death, his grieving widow finds letters and gifts which he planted. They exist to help her move on. It is not a great film, and I don’t think it is considered a wonderful novel. But I had a gut feeling, and I was correct: the character dies from a brain tumor.

I am not that organized. What would I write to each kid? What would I plan for the future? I did tell Steve tonight: passports, speaking Spanish, and visiting our family in Ireland. He thought we should get the passports now. Paco’s expired; Lemon is without.

Shan was saying today that it seems as though we know more and more people suffering from cancer. I supposed it is the age we are entering. In one’s 4th decade, perhaps the rate jumps. The rate of acquaintances with cancer would naturally be higher. Friends, the parents of friends are fighting similar battles; it sucks.

Today, I had a huge craving for pancakes. This is rare anomaly, so Paco, Lemon and I went to iHop. The woman in the next booth was clearly bald under her hat. We compared notes (breast cancer) and compared good attitudes. Sometimes, that attitude is hard to maintain. The simplicity of stress in today’s world is simple indeed. But, then so is solving it. Today, Paco was driving me crazy. Good words, patience, and quiet stubbornness helped. I just hope the stubborn kindness keeps this damn tumor out of my head.

Uh, Lost My Phone

I went to UCSF today for Avastin (more later) and then to Kaiser in Oakland (to follow up on the down under issues). Love the physician, but I think I left my phone in the exam room!

Drugs are Amazing

I have been feeling so awful for a couple of days: fatigued, sore, nauseous. I was not incapaciated, just icky. Today, suddenly I noticed I was not feeling as horrible (5 minutes ago). I had taken a dose of Zofran, the anti-nausea med; and my arms still hurt, my toosh as well, but I am not miserable. I drank half of a root beer. Suddenly, I am not about to pass out.

Wow. The Temodar started to wear out its welcome and the Zofran gave me a small appetite. And Tommy read in his crib and played a cool Arthur (PBS) game. I got 20 min of power sleep.

That said, the minute Steve walks in the door, I am crawling into bed.

Regarding Bea’s Comment

The irony: I bought 3 bags of peas for the kids to eat peas and for my shin splints. In 4 weeks, there were none left (Lemon loooves peas). So actually had to sit on an ice pack. My kids really love vegetables. I am nauseous and feel icky. There is laundry everywhere and the floor has Lemon’s food all over it. But I took my last Temodar for the cycle. I am off Tarceva until Monday to let my toosh heal. Tomorrow, I had better get some new peas.

Dear Bea, My Sister in GBM

Oh my goodness. You had the best advice. It is only you to whom I would have listened well. I am sitting on an ice pack. And the pain is subsiding. The itching, subsiding.

And to those of you who I have mocked in my head, those with back pain or hemorrhoid trouble; I apologize. I, arrogantly, thought that my aches and pains were worse than yours. Then I got a small, stiffening pain in my right hip, and the hemorrhoids flared.  Your pains in a small dose could be considered worse. Hives are frustrating, soreness is challenging, but at least I can move. Lemon is not sleeping and I still put him in his crib with a book, let Paco watch TV, and amd sitting on the bed, on the ice pack. I cannot take Ibuprofen, but ice is working. Ahhhhhhhhhhh

This is a Negative One…

This is a Negative One…

I just took my 3rd day of Temodar. It is not Temodar really that drives me so crazy. It is the combination of the cocktail with life that does that.

Judy, my mother-in-law (mi suegra is easier to type) has been gone for 5 days and it feels like weeks. There were things I did that I probably should not have. When we moved, I made her (she fought it, seriously) that she try out our bed that helps Steve a lot. We are also up later than she is, so rather than cram her in with the baby or make her sleep on the futon, we pushed her to the master bedroom. Unfortunately, it limited my level of late night work. But it proved the point that it improved the overall feeling of a mattress that fits one’s needs. And she used every ounce of energy to help.

Not being here is bumming her out a bit. The weather is so perfect right now (a 90 degree high, ahhh) that she should be envious. She sent us a list of questions about what is going on. She left early Saturday morning. I like that she wants to know all. But I have to tease her that if my blogs are short, I won’t be responding to her either. But then I felt I could combine the update.

I started Temodar on Monday. I met with Dr. Adams, from Kaiser. He has trepidation about stopping Temodar. I go back and forth. I will admit, my thoughts have changed directions and the idea of stopping all of it in a few months seems glorious. And I would get to continue the MRIs every other month to put things at ease. To the appointment, I dragged the Lemon with me and he smiled at all. Bringing his joy to the world.

Kate had been here Monday and Tuesday for a couple hours so I could work more on the rooms. Every adult that I had out sickened me! Kate got a staph infection and is on a miserable anti-biotic and Steve’s back went into huge muscle spasms. Thanks to Kaiser, he could get an appointment right away. It took him 30 minutes to get from the bed to the car. His doctor fixed him up quite well and Steve is amazingly functional. The power of drugs. Steve is on steroids, and gets feisty, but then seems to realize it and apologizes a few minutes later.

Paco was frustrated, and then hit a stride. I think between being second fiddle in a lot of compliments by strangers (competing with the Lemon) and any who had not read the school’s tips on avoiding hitting by walking away from frustration would not understand. The school teaches them that when they have a disagreement with someone, and want to hit the person, they need to simply walk away for a minute. For a while it frustrated me.  I was trying to give Paco a time out and he yanked my thumb back and injured the tendon (last week). I asked Dr. Adams about it and explained what had happened. Then I listed all that Paco was going through. Dr. Adams is rarely sappy, and by regular standards, he was not. But when you know him, (and this is why I like him) he is practical. So when he gently shook his head, he said it is so hard for a kid to lose a pet on top of everything they are going through watching their parents. And Dr. Adams seemed more sympathetic towards Paco’s life than anyone else. Then I realized how much Paco has been through. Again. He has not been getting any time with his hard-working dad. Baseball ended, school ended, Ally’s life ended, we moved to a house that he saw the night before we moved, and he was surrounded by an overwhelmed mother, and many people would say “ooo you are so cute” to Lemon and not a word to Paco.

He has not had much one on one time with either of us nor was golf camp at a professional level (in the park, with plastic tools, bleech).

I started thinking more and more about this and realizing I need to walk away for a minute as well. The child is bright and there is very little you can sneak by him. I was getting so annoyed at everything and I yelled a lot over the last two weeks. For Paco and Steve, they are huge snugglers. Lemon and I, not as much. So they must feel lacking, and we feel overwhelmed by affection. In the last few days I have quickly said to Paco, “I need a minute to calm down,” and walked out to the doorstep for 30 seconds. I have expressed more compliments to him and I have tried to not be so critical of everything. And he started soccer camp this week (Awesome). In 48 hours, there has been a huge turnaround. No tears about minor things, he has had bad dreams and asked for help sweetly. He did not yell today, neither did I. Baby steps we take.

My list of side effect stuff is long and insipid. Most of it skin related. But it is driving me crazy. And, I will admit, I want to wear the misery crown! But alas, I have to be the server this time around.  I was fortunate to chat with Bea so we could compare notes on the insipid level. Here is my current list

(Note: This is Gross**):

Head to toes:

Scalp: dry skin snowing off, scabs are there, but I am trying not to pick.

Eyes: have to remember to put my glasses on so the headaches go away (so stubborn every since my vision was corrected for a few months thanks to radiation).

Nose: Ugh, the dried snot caves. I finally stopped being the Moconator. (Moco in English: booger, snot). Sleeping with Vaseline up nose helps. The end of the nose skin is peeling. So lovely.

Face: Rash not too bad. Lovin’ this Revlon stuff I am trying. I am giving Kate all my leftover stuff. She actually is happy about that.)

Tongue: Actually better than usual. I am chewing sugarless gum more, to stop any reactions in my mouth. I am also sleeping more with my mouth open. I wonder if air is helping it look better. If I eat chocolate or nuts, I use Listerine right away. I miss fresh lemons.

Gums: Bleeding when flossing, but partially due to my laziness.

Throat: Slightly raw. I could not figure out why some things were stuck in my throat. I am wondering if Tarceva has damaged some lining.

Arms: Avastin makes muscles feel sore. Carrying my 20 lb. Lemon is actually therapeutic.

Torso: about 15 or so sores, kind of appear as chicken pox sores/scabs after the blisters chill. This is not that bad, just unattractive.

Abdomen: Gas, gas, gas. Cramping and a lot of deep breaths if the pain hits while driving.

**Icky part: Aside from cramping activity in the colon, having annoying issues in the private area. First, I had a bout with diarrhea last week and it caused diaper rash. About 5 in. long X 3 in wide. Fortunately, with the experience in the diaper department, I knew what to do and it turned around right away. The best solution is air. Now it is just itchy. (Laugh after the next part) Imagine this: A 38-year old chubby woman takes a bath. On the bed, squats in the Yoga child pose with her toosh in the air. I watched a lot of episodes of House on my laptop.  This backfired because:

**I wore running shorts to give my toosh air (cotton underwear) during the running about the house last week and the crevice on the pelvic joint (inside of my thigh) is raw. Raw. Raw. See, the back got tons of air, the front, not as much. So the last 2 nights there have been a lot of poses after taking baths. I have watched a lot of House late into the night.

**The Temodar helped the diarrhea end. For some, it stops people up for days. Not me, I go 6-8 times a day. And it is a decent contstipator. When I was pregnant, I got a separate hemorrhoid for each child. Paco was a size of a grape. Lemon was an itchy little raisin. Lemon is back and brought a blueberry size friend. So I am itchy and owie and need full air for the front and the back. So pleasant. (This is here I say in my head “Stop whining: You are not puking.”

Legs: have a lot of minor sores, but nothing too horrible. Avastin is causing a lot of muscle soreness, but activity works. I got shin splints tonight and actually stretched them away.

Heels: Cracking. More due to sandals, not to Tarceva. I had this a few years ago. Am doing a lot of cool-looking socks with sandals around the house.

Mental Health: I was pretty low earlier in the week.  I was pitying myself. Mostly, I felt like everyone was complaining about minor aches and pains. The house was driving me crazy. But then the Cleaning Angels came today and helped me a great deal. Lemon threw food afterwards, but all in all, it has improved a great deal. We have so much chaos in our heads; I need structure in our home. So I am working slowly and tossing a lot of stuff as I go. I did not have much time to do it before the move. But slow and steady is a good policy in the case of clearing the boxes out, little by little.

More on the superb soccer camp and such tomorrow. I am up late and have not watched House. I guess the key is a baby step to pull out of a challenging phase. I need to take advice from Lemon more often.

The Reason For Quiet

I am ok. I am on Temodar this week. The lack of organization as to how the boxes were put in piles in the garage has been challenging. I am tired, and frustrated.

Already took antihistamine and am getting sleepy. Healthwise, I am great. Mentally, I do not do well with whines and complaints. We are living. Living well. I was lucky to talk to Shan and my buddy Bea tonight via chat. They understand rashes and diarrhea and simple issues in the house. The release to complain without too much drama attached is good.

Lemon’s Sacred Place

We watched the Gene Wilder version today, Willy Wonka and the Chocolate Factory.

Paco in the Chocolate Factory

He will fit for a few more inches. He kept going back to his spot today. The last few days have been a bit challenging. Having photos such as these remind me of what is important.

Whao! You found me!

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