Tooth and Nail

It’s been a long time since I updated my blog. It’s not because I haven’t wanted to; it’s because it’s terribly difficult to get my son away from the computer. He loves researching things and looking up really old lego instructions and then building what he finds. He will soon be 8 years old. I cannot imagine where the time went.

I spent the last couple of weeks getting the multitude of scans, blood draws etc.. that it takes for Dr. J. to decide if I am finished with this round of chemotherapy or not. The answer was not. However we are getting a lot of good results. Just a few spots that didn’t get taken care of yet around the outside of one of my lungs and some close to the surface of my skin on my chest.

My body is tired of chemo though…my toes are nearly numb. And I am losing some of the toe nails. My big toe’s nail is about completely off. Ouch. Dr. J. advised me to keep holding them on with Band-Aids, which I had been doing, and eventually they would grow. The toes hurt. I can’t stand to even have a sheet cover them at night. And my hands are getting harder to work with, a little numb, but mostly just weak. I have a hard time opening a package of crackers and things like that.

Then about the same time I surprisingly had a tooth fall out. My jaw has been a mystery for a couple of years now. I started to have tooth pain right before I started radiation 2 years ago. I went to a Dentist who did the usual x-rays and turns out I only had a couple very small cavities to fill. I was surprised because I was in a lot of pain, especially in one area on my upper left side. He said I had sensitive teeth and was grinding them at night, and that was the source of the pain. True; I do have sensitive teeth and I tend to grit my teeth during the night.

I also was on a drug that has a rare but devastating side effect of causing the jaw bone to fall to pieces. Fearing that possibility Dr. J. eliminated that drug right away and I haven’t been on it since. So here it is; two years later and I suddenly have what I thought was a loose cap. Interestingly on the tooth I had the most pain from. Working hard to baby it so it doesn’t fall off before I get to the dentist…my whole tooth came flying out. I’m momentarily stunned; my son is excited because he wants me to put it under my pillow for the tooth fairy.

I look at the tooth and it strangely looks as if it was sawed off at the gum line. And even weirder to me all of my jaw pain disappeared and I felt a huge relief of pressure. I saved the tooth and took it to my next appointment for chemo and showed it to Dr. J. I was fearful that I had a jaw that was about to fall apart. But thankfully no. My jaw is fine. He said it looked to him like I had an abscess and finally it caused the tooth to fall out. Whoa…how does that happen? I have yet to visit the dentist. I find myself reluctant because this is the first time in 2 years I haven’t had jaw pain. I don’t want to mess that up! Lol. Of course I will go eventually.

I’m happy to report that the cortisone shots in my knees are working fabulously. And the generous gift from my sister of the stair chair has helped enormously. Every house should have one. Yes of course we send laundry down on it and believe it or not, one of the cats loves riding it up and down. But the pain it has eliminated every time I had to up and down those stairs makes it indispensable. Thank you Joan. What better present could there be than something that takes away someone’s pain? I’m very grateful

And so it begins...

...the loss of my third head of hair. I guess this means it's real, not just my imagination. Today it's coming out in handfuls. I wonder what the next hair will look like? After my first round of chemo it came in very, very gray. After radiation it came in darker with just a little gray but more coarse in texture. This time I'm hoping for blond. I've never been a blond. Might be fun to try.

I had a lot of x-rays done yesterday. Including one where they sort of took the picture inside my mouth and down my throat. The technician let me look at it and I have to admit; it was kind of cool. He told me it was the prettiest one of those x-rays he's ever seen. It made me laugh.

The results were good. Strange but good. I was told that there is "evidence" of cancer in my bones, but no bone damage. Good. I wonder exactly what "evidence" means? Live cancer? dead cancer? a "last one to leave turn out the lights" sign? I will have to ask the Doc next time I see him. I am very happy that I don't have to undergo any kind of surgery to stabilize damaged bones. whew.

I'm so looking forward to fall and winter. I love Halloween,Thanksgiving and Christmas. I even like snow. It's wonderful to build snowmen, have snowball fights and make trails for the cats so they can get through the snow to the door easily. Just watching my son catch snowflakes on his tongue is a joy. He's growing so fast. I think we are going to have to take a lot of "snow days" this year. I don't want to miss any of it.

I had just gotten my hair to look sort of normal...

If I combed it just right, wore a headband and made sure I wasn't standing around people taller than me, which is fairly easy since I'm 5'10. I thought I looked pretty good. Enough to get flirted with here and there and not get scared looks from people.

Then the dreaded day came. I eased on into my routine check up with my Oncologist, expecting the usual "I think your doing quite well, let's keep on this, it's working" Instead the Doc said that my tumor marker was up from 17-32. Egads, this cannot be good. He set up a PET scan for me which I took the very next day.

The results were disheartening. New growth in knee, hip, thigh and a spot inside the pleural space in my lung where they did the fix before. Dear Dr. Johnson looked angry and confused as he read the results to first himself and then to me. Baffling.

The conclusion; time for more chemo. I suppose I have done fairly well. It's been about 2 1/2 years since my first chemo experience. I had 5 infusions and then just herceptin all this time, until now. I did have the brain radiation about a year after that initial chemo treatment...so this will make my third head of hair!

I started treatment yesterday. Not used to the 4 hour session...it seemed to go on forever. But I must say that it was not nearly as miserable as my very first treatment. I can only think that my better condition now has made a big difference. My first treatment I had a collapsed lung and could only walk a very short distance; like from the house to the car without having to stop and catch my breath. Now I am much, much stronger.

None of the effects; except tiredness have kicked in yet. I'm hoping for an easier ride this time.

A photo of my son snuggling with me during my treatment. He is the thing I love most in the world.

Blind in one eye...can see out of the other....

It's true. I have lost the vision in my left eye! Did not expect that! It all started a couple weeks ago or so. I can't exactly pin-point the moment that I noticed; but suddenly I could see nothing out of that eye but a large silvery grey cloudy thing. Kind of how it looks when you fly through a cloud on an airplane and you try to look out the window.

I rationalized it for a few days; allergies, lack of sleep, shampoo in my eye. But it didn't go away. Finally I thought maybe I had an infection of some sort, so I got myself into the neighborhood insta-care. The insta-care doc looked at my eye for a minute asked a few questions about allergies and then suddenly left the room. I could hear him talking to a couple of people outside the door. (Do they honestly think you can't hear them????)I heard him say "she has a bubble in her eye" and then someone said "she needs to go to an ophthalmologist. He came back in the room, noticeably nervous and suggested I get to my eye doctor asap.

So the next day I went to my eye guy. I got dilated, took the exam and at first the doctor was stumped. Finally he came up with a diagnosis Ocular Neuropathy caused by radiation. Huh? He explained that basically he thinks damage from the radiation I had about 15 months ago has caused my pupil to be unresponsive. He booked a brain MRI for me the next day. I have yet to get the results but expect them next monday.

Of course the next thing I did was google. Yikes. Frightening. It's a rare side effect of brain radiation that usually makes it's appearance somewhere around the 12-18th month after receiving radiation. I'm at about 14 months. It can also happen to the other eye! Reading that gave me a cold chill of fear. Holy crap. How would I live, raise my son? I read that if the second eye is going to go, it usually follows the first in about 2 1/2 to 3 weeks. But it can happen anytime. I figure I'm at the 2 week point now. When I wake up in the morning the first thing I do is test my eye. Any clouds? floatie things? no..whew.

Getting used to just seeing out of my right eye has been an adventure. I have run into a few walls when trying to walk and turn to the left and today when I drove through Wendy's to get my son a kid's meal, I had to turn to the left and get next to the window...no big deal. Except that I realized much too late that I was miles away from the window. Thought I was right next to it. And it bothered me while picking up a few things from the Walgreens and I couldn't see my son out of the corner of my eye when he walked on my left side. I think a few more days and I'll have the hang of it.

I'm not sure how to do it with no eyes. I keep telling myself that there are blind people living greatly productive lives all over the world. That helps a little. And I just keep staring at things, trying to memorize my sons face, the cat's stripes, the mountains. It's an amazing question...if you thought there was a chance you could lose your sight in the next three weeks what would you want to see? I decided to stare at my son, watch his facial expressions, moods, dances, everything.

There is only one treatment they use for this condition; hyperbolic oxygen. You know one of those things Micheal Jackson used to sleep in? It won't give me the sight back, but it can stabilize the vision I have. I looked at photos of it on google. You get shut in a space-age looking tube thing for up to 2 hours. Claustrophobia...yikes. I'm going to need a lot of valium.

2 year anniversary

I am now a two year, two time cancer survivor. It was about this time two years ago that I had that phone call I will never forget..."you have really bad cancer Londy". Nothing in my life had ever made me feel that frightened and that alone.

I've learned so much in these two years. I've learned about this disease that is so common and yet takes so many lives. I've come to appreciate the older people that I run into in the treatment rooms who always seem happier than most people I know. I've come to appreciate what is really important in life. Things that used to really get me steamed, I really don't give a damn about anymore.

Recently an old friend who is going through marital problems told me that she thought when her husband got cancer it would make him come back to the family. While I empathize with her; I also know that cancer makes you take stock of your life. At first I was in shock, then I started to think about time. Time. Suddenly I didn't want to waste any of it. Didn't want to be with people I don't like, do anything I don't like etc. And for a moment I understood her husband.

Two years have passed and I'm still the same way. I've ended a few relationships and renewed some that were important to me. I used to fantasize about contacting old boyfriends and other people that I am still holding onto anger about and telling them what jerks they were... lol. I thought that might make a funny movie; a woman getting cancer and knowing her time is limited she stalks all her old flames and causes chaos in their lives. Sandra Bullock could play her...

I'm excited to see what the next two years bring. My son is about to turn 7. This alone awes me. 7? Where did those years go? One thing, now I love every day and every moment I get to spend with him. I am grateful.

Retiring??? noooooooo......

I had my herceptin infusion on Monday. Nothing unusual. But I found out that Super Nurse Susan is retiring next month. Yikes! She is so amazing, I've never encountered a nurse like her. Her vast amount of knowlege and experience meant so much to me. Without her I would have been much more insecure while going through treatments.

Don't get me wrong; I think anybody that can afford to retire should do it and enjoy life. She said she plans to enjoy her new Grandbaby and do some outdoors things like kiaking down the river. I don't blame her. I'm sure she has witnessed what is ultimately important in life...and it isn't the paycheck.

She was the person who gently explained what was going to happen to you the first time you got chemo. Honest, reassuring, empathic. I heard her do this many times and each time she showed the same concern and respect for the patient. I can't quite imagine who will fill that role now.

Meanwhile... I am feeling so good. I still get tired at times, but I have more energy and way less pain than I did just a few months ago. My hair still hasn't grown all the way in since radiation. Still a bald circle on the top of my head. But I don't care. I've become fond of hats.

I'm focusing on getting my life caught back up to normal. Hey; I even finished my taxes..ha! and..um..in case your reading this IRS..it was my pleasure to finally get them done for you...forgive me?

A clean mind...

I've been having a bout of headaches recently. Bad enough to scare me. I thought.. "oh no...more tumors". I had a follow up head MRI already scheduled so I waited and took painkillers. They were so intense I would have to take 2 Lortab 10's in order to get relief.

After having to re-schedule the appointment a couple times because of a lack of transportation. I have to take valium to get through a head MRI and thus I need a driver to take me to and from this procedure. Finally the day came. After dozing through the noisy MRI I was to meet with Dr. Whipple.

I went through the usual weight, blood pressure routine. And waited for him to come in for the appointment. We talked for a minute and then he ran out to look at the results of my test.

He returned looking like someone that had just won a small jackpot in vegas or something; you know that kind of happy smirk. He first said that it was the fastest test result he had ever gotten back. Then he said there was "nothing there". Which of course gets some giggles, like you have an empty head... But the important thing is MY CANCER DISAPPEARED! My head is "clean".

Yes! I knew it would. There is no way I was meant to have brain tumors. It's been a long haul. It was harder than I thought it would be and I think I am still recovering. But let me tell you; it is an amazing feeling. My hair is trying to grow back. I still have bald spots. But I can wear hats forever!

Now for those headaches.... I think it is stress and jaw problem. But they don't scare me anymore :-)