It has taken a really long time, but I have finally realized my "normal" is not like anyone else's normal. It was pretty normal our life was just about raising five kids with Down syndrome. I mean, there are extra curricular activities and school meetings with a few doctors appointments thrown in there. The same things any other parent does. But add cancer to the mix? Yeah, we lost the normal.
Here is what today has looked like for me:
Get the kids up for school, breakfast, dressed, teeth and hair done, yada yada yada. Often after the kids leave I go back to bed for a bit while Dean and Audrey have some daddy/daughter time. Then I take a quick shower before Dean leaves for work.
But today was different. Today I had the pleasure of attending an 8:00 a.m "Chemo Class". Yes, that is right. It was a class to go over all the crappy side effects of chemo, and explain to me just how crappy I will feel during treatment and how to manage those side effects. The nurse conducting the class asked if I was getting a port. I told her no, I wasn't planning on it because it is only four rounds. "Are you hard to get an IV in?" she asked. Apparently one of the drugs I'm getting causes burns to the skin (as in 2nd degree burns) and if you're a "hard stick" this can really be a problem. Well, the last two times I've needed blood drawn or an IV started the nurses have had a really tough time. Hmmm The nurse took a look at my veins. Because I've had lymph nodes removed in one arm, that only leaves them with the left to use for IV's, and they can't use the ones at the bend in the elbow. That leaves only my left hand and she didn't like the looks of the veins there. So, a port it is. Doggone it. I was hoping to avoid some of these steps! Like another surgery - however minor - to have a port put in. I know in the spectrum of life its not a big deal, it just bothers me it has to be done in the first place. One more step down the road of not having any control over my life. I'm waiting for the hospital to call me back. It looks like that procedure will be done on Monday or Tuesday next week. I did come away from class with a free thermometer. Score!
From there I raced over to Tyler's house because he'll be helping out here this weekend. It sure is nice he is around to help!
My next appointment was with the Fantasia Salon. They specialize in hair loss and wigs (among several other things) I wasn't planning on getting a wig, but my insurance covers it and I figured there would be an occasion or two where I would rather have hair than wear a hat or go bald. I have a very small head which is flat on the back and am a bit difficult to fit. Of course I am! Surely you have figured out by now that I don't do anything the easy way. …..sigh….. I was a bit shocked at how much hair is on the wig! "Is this how much hair normal people have?" I asked. My hair has gotten so thin that I had forgotten! "This wig has (insert number) hairs per square inch, which is the average amount for women." Wow! I might have half that amount of hair. Now I'm wondering, what if I like the wigs better than my new hair after chemo? I might just keep my head shaved and buy nice wigs!
This is it. This is my new normal. Buy wigs, raise some kids, toss some surgeries into the mix here and there, attend some school meetings, get some chemo.
Ain't life grand????
Here is what today has looked like for me:
Get the kids up for school, breakfast, dressed, teeth and hair done, yada yada yada. Often after the kids leave I go back to bed for a bit while Dean and Audrey have some daddy/daughter time. Then I take a quick shower before Dean leaves for work.
But today was different. Today I had the pleasure of attending an 8:00 a.m "Chemo Class". Yes, that is right. It was a class to go over all the crappy side effects of chemo, and explain to me just how crappy I will feel during treatment and how to manage those side effects. The nurse conducting the class asked if I was getting a port. I told her no, I wasn't planning on it because it is only four rounds. "Are you hard to get an IV in?" she asked. Apparently one of the drugs I'm getting causes burns to the skin (as in 2nd degree burns) and if you're a "hard stick" this can really be a problem. Well, the last two times I've needed blood drawn or an IV started the nurses have had a really tough time. Hmmm The nurse took a look at my veins. Because I've had lymph nodes removed in one arm, that only leaves them with the left to use for IV's, and they can't use the ones at the bend in the elbow. That leaves only my left hand and she didn't like the looks of the veins there. So, a port it is. Doggone it. I was hoping to avoid some of these steps! Like another surgery - however minor - to have a port put in. I know in the spectrum of life its not a big deal, it just bothers me it has to be done in the first place. One more step down the road of not having any control over my life. I'm waiting for the hospital to call me back. It looks like that procedure will be done on Monday or Tuesday next week. I did come away from class with a free thermometer. Score!
From there I raced over to Tyler's house because he'll be helping out here this weekend. It sure is nice he is around to help!
My next appointment was with the Fantasia Salon. They specialize in hair loss and wigs (among several other things) I wasn't planning on getting a wig, but my insurance covers it and I figured there would be an occasion or two where I would rather have hair than wear a hat or go bald. I have a very small head which is flat on the back and am a bit difficult to fit. Of course I am! Surely you have figured out by now that I don't do anything the easy way. …..sigh….. I was a bit shocked at how much hair is on the wig! "Is this how much hair normal people have?" I asked. My hair has gotten so thin that I had forgotten! "This wig has (insert number) hairs per square inch, which is the average amount for women." Wow! I might have half that amount of hair. Now I'm wondering, what if I like the wigs better than my new hair after chemo? I might just keep my head shaved and buy nice wigs!
This is it. This is my new normal. Buy wigs, raise some kids, toss some surgeries into the mix here and there, attend some school meetings, get some chemo.
Ain't life grand????
3 comments:
I'm sorry it seems unavoidable but a port is so not minor. At least it wasn't for us. Hope yours goes well.
I am on my second port. I got my metastatic diagnosis about 3 weeks after I got my first port removed. For my new port I was able to choose the location based on my experience and it has been a lot less painful and much easier to access than my first port. It is very obvious though because I wanted this one up higher. Given that I only have one breast I don't ever wear low cut tops so it isn't a problem to have it a bit higher up than usual. They usually put it just into the fatty bit at the top of your breast on the non-surgery side.
I can tell you that a port is so much easier in the longer run. They can take bloods through it if you get there early for chemo and you don't get the vein collapses and other vein issues. I have nearly run out of veins they can use but at least I know that I can get treatment and bloods done through my port. I love having a port. :)
You are right though, it is another thing where you don't have control over what is done to your body.
Your allowed to be ticked about the port. When your hanging on to normal like mad, one thing extra is just too much!! Ismiled when i read, where you said you don't do anything the easy way. I was born with MRKH(basically no uterus). when dr's need to check something i'm like it won't be where you think it is so look around. They look at me funny, but i'm always right. MRKH have issues between T1-T5 but of course mine is C1 & C2. I broke my back and should be pain free in six months, 14 yrs later i'm still waiting. The dr's have still to work out exactly where the pain is coming from. I have heaps more stories like that. God sure made me one of a kind ha ha. So if you want to wear a wig after chemo cause you like the wig hair better than yours, do it. You could have a Cher wig for the bumble bee song days or red hair for your I'm too sexy days or a blond one cause blondes are supposed to have more fun days. I'm sure you could find a way to get up to mischief and have some fun. Hugs
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