46 is the new 62.5

About 6 years ago or so I burned the bottoms of my feet. No it wasn't a fire-walk gone wrong... I was dancing. It was a beautiful summer day at Snowbird Utah. The dance stage was outside and uncovered. The floor was made of this bouncy black rubber material. Not realizing it I went on stage barefooted. It didn't feel so bad while I was dancing although I could tell it was hot. Afterwords when the adrenaline of performance wore off I was in tremendous pain. I had to walk up a long hill to get to my hotel room at the resort. Each step up that hill was horrendous. Pain from the bottom of my feet like you cannot imagine. By the time I got to the room they had already started to form blisters. I had several huge, silver dollar sized blisters on the balls of each foot.

I thought I would never feel such agony again. I'd learned my lesson, always check out the stage for foot safety before going on.. but now I wake up to that same type of pain every day.

I don't know why, I think perhaps it is from the herceptin heart problem and maybe I'm not getting good circulation during the night. It's excruciating when I first get up and stand, but then after moving about awhile I goes away. I find that I get stiff and painful after any laying down or sitting for more than a few mintues.

So it was on one of these mornings a few days ago that I hobbled to my computer and found one of those emails offering to tell you your "real age". That morning I felt about 80. I decided to give it a try.

Armed with very current information from my recent visit to the cancer clinic I took the test on the site honestly as I could. I didn't even think they would have a place to list cancer; but they did. You also list your treatments, how long ago you were diagnosed and a few other details.

After going through the test you click to send, and then wait... and wait. About a day later your "results" show up in your email box. I opened mine to find out that I was scored at 62.5! 62.5??? really?? Wow.

Of course now comes the genius of their program; you get to click back to their site and they have lots of options to lower your age by making purchases etc. I'm envious. I want to create a "know your love life" site where I score peoples relationships and then send them a low score and direct them back to JungleRoses.com where they are promised a better score if they buy. Sounds good eh? Then I can get on Oprah... again...lol.

62.5. Ugh. That hurts. I knew the cancer thing would throw it but I thought maybe 10 years... My Mom died at 70, my Dad was 82. My Dad never had cancer, my Mom did, so did all my Mom's sisters that have passed. Scary.

I'm sure my age would come down if I resolved a few things; like that mystery blood pressure reading. I have to admit I have not yet had it check again. And I could reduce my BMI. Ah well... I always felt like the oldest in my family anyway... even when I was only 10.

One good thing came from the test site. I got bounced to a site ran by the company that makes herceptin. I signed up as a patient taking the medicine and agreed to email "advice" from them and such. But much to my surprise I received a nice package in the mail that included a lot of information booklets on Herceptin and a pink tote bag that I think is cute enough to use as a purse...I think the approximately $1500.00 every three weeks that Herceptin costs makes it quite a status symbol.

If you want to take the test yourself go to www.realage.com. The Herceptin site is www.herceptin.com

"your heart needs a rest Londy..."

That's what I heard today, "your heart needs a rest...". Yes I agree, my heart has been through a lot in the past 6 years or so... times of complete joy, times of total grief... yeah, it is tired.

But that's not what he meant. My recent MUGA scan showed that my heart is starting to not work as well as before. Most likely due to the herceptin of course. Herceptin can cause heart damage and symptoms like congestive heart failure. So after today's infusion I will be off herceptin for a couple of months.

Damn. Yes I know how important heart function is, but it also scares the crap out of me to go off it. I voiced my fears to Dr. Johnson "I'm afraid I'll start growing cancers again..." and he pointed out that I was "still on Tamoxifen right?" and that is very good at prevention. Then he added in that serious no-nonsense tone "but if you notice anything call me right away".
I also finally remembered to ask him what everyone asks me all the time... "how long do you take this drug?" He said he considers herceptin a "maintenance" drug... so in therory I could be on it all my life. Except for this heart thing of course.. I guess with periodic rests and if my heart recovers during those rests....hopefully I can be on it for a long, long time.

Naturally as soon as I could I googled it and found that I do have several of the indications of a herceptin heart reaction. Some of them I've passed off as part of my surgery recovery or lung problem or perhaps even my recent sinus infection.... I guess we shall see what problems disappear during the next couple of months.

I also had crazy-high blood pressure. I've had it nearly every time I've gone in for my chemo and my infusions without chemo. But I've also not had it when I had it checked at my OBGYN.... hmmm... curious.

I asked Susan, the chemo-nurse dynamo, (whom I realized today I now like more than my friends.. but that's a different blog...) if it could be a result of the heart problem and she said that the heart problem usually causes low blood pressure.

She mentioned some other causes such as gaining weight, stress and then she said "it might just be how you are now...this could be how you will be..." Hmmmm... okay. Both her and Dr. Johnson suggested monitoring it at times other than my treatment visits. Dr. Johnson said with a chuckle; that "most people's blood pressure goes up when the come to see the cancer doctor." Point taken.

So the next couple of months will be an interesting time. I'm going to monitor the blood pressure, keep track of changes in how I feel and in my body. I'm going to try the low-sodium diet thing and as for lowering my stress.. well... uh...sure...where do I even start?

There used to be a British comedy on the PBS station here. I don't remember what it was called but in it a couple buys a farm and tries to become "self sufficient". I used to fantasize about that. They live on food they grow on the land, heat with a fire burning heater, barter for services, bake their own bread and so on... and of course they have disapproving upper crust neighbors much like the Clampets did on Beverly Hillbillies. Much comedy follows... and it seemed so fun to me at times. I would think "yeah, I could do that..". So if you see me ditching my appliances for wood burning stoves and I start hang drying my laundry outside you'll know why....

Happy New Year!

He invented "snow swimming"

Christmas ain't what it used to be...

Christmas used to be a big deal. It used to mean a large family gathering at my parents house with a turkey dinner and all the trimmings. Sure my big sister would get bored a few hours into it all and need to go shopping or something.. anywhere... Dad would fuss over the dinner cooking and the cleaning up and make everyone feel like they weren't doing enough. There was some drinking and few outside smokers...a grandkid or two here and there. It was heaven. It may not have been appreciated by all of us at the time... or perhaps just not appreciated enough.

A few hours after dinner eveyone had to go somewhere; other families, drop in's for dessert, whatever. There was often a feeling of "oh we just have sooo much to do...". There wasn't enough enjoyment of the moment and now it's gone.

My parents are gone... there is no "home" to go home to "go home for Christmas" anymore. I suppose that happens in all families. Once the parent generation is gone it all changes. Everyone has their own "families" or somewhere else to be.

That is what I am still struggling to do; make Christmas for my family. My family of me, my son and our two cats. It's just us. It seems wrong; like I'm cheating my son out of the big joyus Christmas that you see in all the TV shows. I wish there was one kid's TV show with a single Mom. They either have suspiciously absent parents or some cozy bear family that lives in a tree.

This year had extra complications. It takes all the energy I've got to get through a normal day; forget fighting crowds and shopping. A lot of the traditions I had tried to build were just impossible for me to do; I couldn't put lights up outside or bake the endless cookies I did the last couple of years. Plus how do you buy for Santa when your child is with you? There was no way. At least I got my child's Father to put up the tree...

Then on about the 22nd I realized I had no gifts for my child... none. I had to do something fast or we would not get a visit from Santa.
In tears of desperation I called my big Brother Lee who jumped to the rescue. He braved a blizzard... really.. you should see the snow here...and went shopping at midnight. He then wrapped and organized all the gifts and in the wee hours of the snowy morning when most people are still sleeping; snuck them into the back of my truck.

I braved a new foot of snow at about 7a.m. to get them from the truck and sneak them into the garage so they could go under the tree that night. Without Lee we would have had no Christmas.

As I was sneaking the gifts into the house after my son finally went to sleep around 1am I realized that I forgot to mention to him to get something from Santa for me and the cats. So my stocking had a few odd things in it; batteries and a head-strap flashlight.. lol. And well.. I had to convince my son that the cats woke up early and ate all their gifts because Santa brought them such yummy treats. I'm not sure he believes me.

Some day when he is older I'll tell him about Lee and how Christmas came about this year. And I have a new appreciation for my Mom who used to stock away odd gifts "just in case". She kept a shelf of things that you could go to and find something for someone at any time. She was one smart lady.

A whole year?

I've had a few people drop me emails and tell me to "keep writing"... lol. I guess I haven't posted to my blog as much lately. I intend to continue, it's just been a busy time for me. Especially now that we are again nanny-less. I don't get a lot of spare time.
I had a MUGA scan last Friday. That's to check my heart for problems that can be caused by herceptin. I left my son with his Father for a couple of hours while I went to have it done. I asked him to put up our Christmas tree because I didn't think I could manage it. We have an 8 foot tall, pretty, fake thing that came from my Father's cabin. It's heavy and tricky to put together. So I left the task to the two boys.
When I got home my son was running around excitedly putting decorations here and there; his Father was plopped in a chair - exhausted. Seriously, he looked like he was going to pass out. lol. A few hours of decorating and he looks like I do after a full day...
He was worried about the tree because my son had placed about 100 ornaments at his eye level of about 3-4 feet. He thought I might be mad about that because the tree didn't look "perfect". It made me smile. I told him "that happened last year too...to me it is perfect" and then I realized that I have been sick for an entire year.
Last year I had pneumonia at this time and entrusted the tree task to an employee. Who also was worried about the kid's eye level ornaments. Damn.. a whole year. A year of my life has been sucked up and derailed by cancer.
I often feel bad about that.. not for what I have missed out on, but what my son has missed. In the last year we made it to the park once, he didn't get to do karate or boxing or swimming like I promised. And playdates have been non-existant because of germ fears. There are so many places he wants to go and things he wants to do that I'm not quite strong enough for yet; it breaks my heart.
At my last infusion a week ago, I got some antibiotics for a sinus infection. That seems to have helped my energy level a lot. I must have been fighting an energy zapping infection. But I'm still not what I used to be... I wonder how much of it is me. By that I mean that I know I used to push myself, and do more than "normal" people. I've always been sort of crazy that way... worked 2 jobs, owned businesses, taught dance classes and gone to University all at the same time.. that sort of thing.
For me a normal day just a few years ago used to be working from 9-5 at Jungle Roses, then teaching 2 hour long dance classes and then perhaps working on my own choreography for another hour or so. I was extremely strong and could easily sustain 45 minutes of hard aerobic activity and still be able to carry on a conversation, not to mention flexibility and muscle strength. Those days are gone... I try to do a couple of moves now and then and my body backfires...
But there is a part of me that somehow even if it is irrational thinks I can do that again.. right now! It kind of makes me crazy... or well crazier..
Expecting less of myself is an interesting concept. Is it right to expect less of yourself? I have adjusted my expectations of other people, but not myself.
It brings up the whole "what's important in life..." lesson. Yes, I know that being with the people I love is the most important thing. But I also refuse to live in poverty or give up and just sit in an easy chair and tell my son to play by himself.
I've adjusted to some things though. Like right now; there is 6 inches of snow on my driveway and sidewalk. In past years I would be out there shoveling it... guess what? It ain't happenin today... lol.
But I feel like I should be out there doing it...

What's happening to my fingernails?? Yikes!

Gee; I was so proud. Thinking I had avoided yet another chemotherapy side effect... nope. I guess I just was able to stop chemo so quickly that it hadn't had time to surface yet. Now that my finger and toe nails are growing out and the parts that had been damaged by the chemo are reaching about mid-way point.. holy crap! I lost one nail just below the half way down point... painful and frustrating. I tried nail-glueing it; that worked for a couple of days. I have been faithfully using the super nail hardener... sort of helps. But as of today I can see splits and cracks about half way down on 4 fingernails and 2 toes. wow.

I can work okay, but typing is a little sting here and there. When I work with the roses I just put floral tape on them and I can do just fine; although it looks a little funny. Bandaids fall off when they get soggy; the floral tape doesn't. But if any of my clients get a mysterious looking wad of floral tape in their box of roses...um.... it'd be from me. Just kidding... I'm really careful, that won't happen. I'm sure florists have millions of uses for floral tape, and viola' I have found a new one!

I can even see rings on my nails; like you count on a tree to determine age. One ring for each chemo treatment.

So you don't think I'm addicted to Lortab then?... Can I have some more??

Yesterday I had my what is now my every 3 weeks routine; an infusion of anti-cancer drugs. I was looking forward to talking to Dr. Johnson. For the past couple of weeks I have been in pain... a strange type of pain I haven't felt before. It would wake me at night, stop me during the day and make me really crabby. It is like a throbbing, flu type ache in my legs and sometimes my arms too. If upon waking in the morning my Lortab had worn off and I was in pain it was difficult to walk. I was baffled and frightened.

I also noticed that my Lortab didn't last as long as before. It used to be that I only had to lick a Lortab and my pain would go away... okay maybe not quite that. But a year ago 1/4 of a Lortab 10 would have me pain free. Even free of that February 13th, 4 p.m. kind of pain that only a florist knows. While I was on chemo my need jumped from that to first 1/2 and then a whole pill to rid me of the pain. Then when I was in the hospital it jumped to 2 whole pills with supplementation for breakthrough pain...

After my surgery I was on 2 Lortab 10 every 6 hours. When I tried to taper off to 1 pill every 6 hours the problem began. I figured it's been over a month since the surgery now; I should be able to do without painkillers. My rationalization was backed up by the fact that I had exhausted my perscription from Dr. Goff weeks ago. I was using some from an early prescription from another Doctor. So you see... I started to think I was a Lortab addict.

I knew it wasn't cancer pain; and it wasn't localized... wtf? I also knew I was miserable and yesterday morning at 5 a.m. I took my last Lortab on a no longer refillable prescription. Slight panic set in...okay more than slight.. kind of huge panic.. Naturally I searched the 'net for withdrawl symptoms etc. I'm starting to think I'm going down the Rush Limbaugh path....

So I ask Dr. Johnson about all this and describe my pain. He says "I think you are just trying to wean off it too fast". whew. So then I ask if I can "have another presciption?" Oh so you don't think I'm addicted? Great! Can I have some more??? Sort of funny... but I was very relieved when he said "yes". He also suggested another non-narcotic pain killer to slowly change over to that I can take for a longer period of time if necessary. And so far it's all working well.

My tumor markers remain in the normal range and the dead tumor in my breast is shrinking! And I have learned that pain killers are not such a bad thing if you use them correctly... I'm not so afraid of them anymore Ahhhh.. only 2 more hours and I can take another......