So I'm gonna dye my hair and get a new tattoo....

Yesterday my son came running up to me with a large red heart he had cut out of construction paper for me. He said "here Mom I made this for you." Touched, I said "oh thank you.." and then he said "it has words on it, do you want to know what they say?" "yes" I said. So he says "It says Dear Mommy, I love you and I'm very happy you are going to stay here for a long time." Stunned, I had to think for a minute. I've been very careful to make sure he did not get an idea of how serious my illness is because I didn't want him to worry about potentially losing his Mom. So I asked him very gently "were you afraid I was going to leave?" "Yes" he says, "I thought you were going to be an angel." I said, "you did?" and he replies, "yes, I did but I'm glad you are going to be here a long time". So I ask "why did you think that? was it because I was so sick?" "No" he says, "it's because you are so old."

It was hard not to laugh, but I managed to contain myself. And so I said "I'm not that old honey, I'm older than most Moms, but not that old." "Oh" he says, then asks "when are people old enough to become angels?" I think for a minute and then say "well it's different for each person, but usually people are in their 70's or 80's and that's along time away for me". He says "how long?" I say "that means you will be married and have your own kids and house and everything". This comforts him and he says "oh good, I was worried about who would take care of me, but I'm glad you going to be here a long time."

It's true I had him at an older age than most; it was just a few months shy of my 41st birthday when he was born. And for awhile it wasn't that big of a thing. Once in while someone would make a mistake and call me his GrandMa. Here in Utah people start their families very young and my high-school peers have grandchildren his age. So it's understandable. But now after my year of illness; I look 10 years older; and that "Grandma" thing happens constantly.

Like I will be paying for our groceries and the check out clerk will say "oh I bet this star wars book is for your Grandma and these sprouts are for you?" and he will roll his eyes with impatience and look at me. Sometimes I explain; lately I haven't. It gets built upon when I have to stop running and playing with him because I'm worn out.

And my hair came in almost completely white. It has amused me thus far. I wanted to see how it turned out. It has darkened up a bit, it looks much like Jay Leno's hair did couple years ago before he went nearly all white... except I'm cuter of course. But the hair does it. I look like a grandma. I didn't think much of it and was thinking of growing a little longer and just seeing how it looked. But now I'm thinking I need to look a little younger and stop the grandma assumptions a little.

I don't want to be one of those people with really obviously dark hair that doesn't match their face either. So I'm thinking of colors. My sons say purple.

A week or so ago I got my usual round of anti-cancer drugs. I'm back on herceptin and I found that after being on it for a couple weeks I started feeling much better. Dr. Johnson believes it is due to the herceptin. So I probably started spitting out cancer cells again over Valentine's Day when I was off the wonder drug. That's scary. I'm dependent on the drug that beats up my heart. I'm hoping this time I don't get the heart reaction and I can just stay on it. Or I guess if I do we take a break from it again and then hope for the best and get back on it as soon as I heal. It's a lot to think about. But the idea here was to keep me alive and comfortable until someone comes up with a cure. Please whoever you are - get to work.

I was mulling all this over as the chemo nurse was preping my port for the needle... she asked how I was? So I told her that "I got really sick off herceptin, so I guess I will be on it all my life..." She in all seriousness very kindly said "well you have a beautiful port...it's nice, it gives good blood.." it was so cute and it made us both laugh. So I said "yes, it is lovely isn't it? I think I'll start wearing off the shoulder tops now that spring is coming and really show it off.." by that time we were giggling out of control.

But then I thought of it... hey, what if I got a tattoo around my port? How cool would that be? Like it could be the center of a flower, or a moon with a fairy on top, or a Celtic circle of life.... my mind went crazy dreamingly thinking of the possiblities. But I'm not sure you can do that.. I'd hate to mess it up and then have to have surgery to put in a new one. Maybe it could be around it somehow and not right on top of it? hmmmm... I'm still thinking about it. Next time I'm a little bored in the chemo room I'm going to ask Susan the super-nurse... that should get a reaction.

Why the pain?

wow.. I did not realize so much time has gone by since I wrote on my blog. I've been recovering from Valentine's Day. Really! Recovering in every way. Physically, mentally, fiscally. And I have not been feeling very good. That's not good. I was in a ton of pain and extremely exhausted after Valentine's Day. I thought it would go away in a few days like the Valentine fatigue always does. But it has not.

I had an appointment with Dr. Johnson a week or so ago and got some really good news; my MUGA scan shows my heart to be functioning great now. So I got to go back on herceptin. But that good news added to my dismay; if it isn't my heart making me feel this bad, what is it?
When I explained my pain and tiredness to Dr. Johnson his face fell. Like he just got told he didn't pass a very important test that he was sure he did. The look on his face said a lot. He then asked me some questions about the pain etc. "Is it bone pain?" he says. Hmmmm... I don't know. How would I know? I tell him I think it's mostly muscular because I feel it after exertion. Like I vacumned the living room and then I'm sore for two days. He looks at me like I'm nuts. His fear is that during my time of herceptin cancer started resurrecting and is metastasizing to my bones. Oh crap.

In his way of thinking out loud; he said if so the question would be "was the treatment valid and just stopped to soon? or was it a complete failure?" Oh crap again...
But I said "what about my tumor marker?" "good, normal" he says. So of course I argue "wouldn't it be way up if that was the case"? He says "yes, but also maybe not.." Silent screams are going off in my head. He also points out though that I'm not anemic; patients with bone metasticies are anemic. So he says his plan for now is to put me back on herceptin and see how I am in three weeks and if he feels it necessary he will order a scan to see if indeed the cancer rose from the dead.

I tell him that I think I am just exhausted; you know like the rock stars get and have to go away for a few weeks? He laughs and says he "doesn't believe that exists and that he thinks I work much harder than a rock star."

After all this time I still had high blood pressure, it never went away again. So I went off to Dr. Alsup. He had not seen me in year. There was a lot of shock and awe when I strolled into his office. "Weren't you stage 4?" "Did you have a mastectomy, lumpectomy?" Once they got over the initial "what happened?" He began to prescribe stuff. He's one of those types. "here's a scrip for this, here's one for that, and this..." I came home armed with a new load of medications. Even one made from snake venom. Ha...take that blood pressure.

I've been adjusting to the new meds. It's taking a little time but it's a little better sometimes. I still have some things I need to fix that I'm sure is contributing to my pain. Like a trip to the dentist and the chiropractor would help a lot. I have those scheduled as well as the eye doc.
But even as I have been pinpointing all that; there is unexplained pain; especially around my rib cage. It hurts to breathe deeply, sneezing and yawning are torture.
Researching on the 'net I found there are two types of bone pain; metasitic and non-metasitic. Since I'm not anemic and have normal markers I think it is the latter. If not then I guess it's back to chemo or whatever Dr. Johnson deems necessary.

Today I had a short-lived break from pain. I take as much painkiller as allowed when I need it; which is all the time. But lately it's not taking all the pain away and is only making me feel sort of sick. But finally today after I got done working I sat down in my recliner while my son was building with his K'nex and relaxed and felt no pain! yay. So of course I dozed off.

Maybe 10 minutes went past before I awoke to a horrible banging. My delightful impatient son decided to wake me by banging on the chair. Both me and the cat flew at least a foot in the air. A hiss was heard and a slight scream. "Oh man...why did you do that?" I asked and he says "I wanted you to wake up and help me build". I said "but honey, you build all by yourself, you don't need my help." He says "yes, I know but I really enjoy the company." Sigh. The pain free state so far has lasted into the night. I'm hoping to get some good sleep.