This is Life...Hold on tight

2010-02-07T14:22:00.005-07:00

I have been thinking about posting for way too long. I was just hoping so much that everything was in the past and I wanted things to be better and something to finally work. I didn't have the heart to post when things weren't "perfect". Everybody wants to read about a happy ending, and I didn't have one to give them.

I decided to continue writing, not so much anymore to keep people up to date on myself, but possibly to help somebody that may be going through the same thing.

Just a few quick bullets to bring this blog up to date, then I will expound on the details further:

Continued to have left sided weakness and numbness
Right hip pain from being off balance because of the "complex migraines"
Developed lymphedema in my left arm
Came out of menopause
Continued abdominal bloating

It has been a rough few months. To make a long boring story very short, I wasn't able to stay on the steroids, and by the third day it seemed to cause more problems than help. I established with a local PCP. She put me on Amitriptylene to counter the steroid symptoms. I went back to the Neurology

Clinic in Gilbert for a follow-up and saw the P.A.. It was a complete waste of time. She told me to continue to stay on the Amitriptylene and increase the dosage. She also gave me a headache journal to fill out. So basically, I drove 600 miles for absolutely nothing. The biggest problem was that I didn't see the same doctor, and although the PA was nice, she really didn't offer me anything.

If I were to fill out the journal, it would either be 100 pages long with constant (non-pain) symptoms or it would be blank since I rarely have "headaches", I have constant numbness and weakness. And I didn't want to be on medication for 6 months! I really think that the first physician that I saw probably could have helped eventually, but since I wouldn't be seeing him for all the visits I cancelled my follow up with the office, and I won't be going back. At this point I was close to giving up and "living with it". The only problem is, that my family has to live with me.

My left side was weak, and I was compensating with my right side, so my right hip was extremely sore. If I sat down for more than five minutes, I could barely walk when I got up. I was still having numbness in my jaw and my left foot. I was still taking the Amitriptylene, which didn't seem to be helping, it only made me really "draggy" during the day.

With all this going on, I quit swimming because I didn't have the energy to get up in the morning. So, things continued to spiral down. If you really stop to think about cause and effect, everything you do has some impact on something else. It is only when you finally "crash" that you realize where it all started.

....and things started to look brighter.

I quit taking the meds and tried to get back to my "baseline", which wasn't saying much, but it was better than what I was dealing with.

My friend, who does Cranial-Sacral therapy came down from Phoenix for Thanksgiving. I agreed to have her do a treatment on me. It was the first time I had ever done anything like that. I just really didn't see how it could help. But it did!!!! I just wish I had know this months ago. The numbness in my jaw went away, the numbness in my left foot and hand decreased, and my right hip didn't hurt. I have had a couple other treatments from her since then, and so far, she has been the only one that has truly helped.

So, that part is much better, but I did develop lymphedema in my left arm. That is the side that had the lymph nodes removed. It wasn't doing a lot of swelling, but it would get very sore, and I could feel the lymph nodes. I think I have had it for about a year, but when I asked the doctors about it, they didn't seem to know what caused it. I am going to a lymphedema specialist in town, and that has helped tremendously. She showed me how to do manual lymph draining and use Kinesio Tape (amazing stuff by the way) and I got my lymphedema sleeve last week. As long as I keep up with the manual lymph drainage, I am fine.

I think I will save more for a later date. I am tired from all this writing.

...And I say Yah, Yah, Yaaaaah!!!!

2009-09-23T05:32:00.008-07:00

Could it possibly be true? Can it really be this easy? I sure [insert other words here] hope so. I was starting to feel a little hopeless. One of my "friends" stated, "Maybe it is something you are going to have to live with." That statement about put me over the edge and made me want to really give up. It isn't like living with just a crooked smile and swimming like Nemo. It is the entire "me" that the migraines have changed. It has altered me waking up with new ideas and wanting to complete them. It changed me being the extra obnoxious mom and friend (that was before by the way). As much as my friends and family say they don't miss that, I bet they do. It was all a part of who I was, or should be, instead of a walking zombie.

I ended up going to a headache specialist in Phoenix yesterday. The first doctor at Barrows was at a loss for what to do for me, and wanted to send me a specialist that only dealt with headaches. I called the two doctors that he referred me to. The first doctor was at Mayo, and they don't take our insurance. The second doctor had a clinic near Glendale, so I called and made an appointment with Dr. H, the O.D. for October 1. They had asked if I wanted to be on the cancellation list in case anything else came up earlier, and of course I told them yes. I got a call from them on Tuesday, and they had a morning cancellation for the next day with my previously scheduled doctor, and an afternoon, cancellation with another doctor in the office. I asked her briefly about the other doctor, she just said that the entire office only dealt with headaches and he was qualified to work with me. Okay, I am desperate, and hopefully there is a God working for me, so I took the afternoon appointment. I could have taken the morning appointment, but I would have to get Mike up really early... so I took the afternoon option.

The doctor (Dr. F)was very pleasant and thorough. He had a great sense of humor. You know, so far the best doctors that I have dealt with have an amazing sense of humor. It probably rubs some patients the wrong way, but I find it refreshing. It makes me feel less like a piece of meat. Dr. F came in, shook our hand and said, "Okay, I was looking over your chart...". This is the part where I usually repeat everything that I have written on the chart, but this time was actually a little different. As he is flipping through the chart, he says "It looks like you have had a few bad years. Did you check to see if your warranty is up?" This comment was received by a raised eyebrow and a smirk from Mike and a crooked smile from me. I responded, "It kind of looks that way, doesn't it". From there he asked a few questions to clarify what was on the chart, but didn't have me tell him word for word what I had already written or what the other doctors had documented. I am glad that I decided not to put "I am suicidal and I carry a gun in my purse" in the comments section. I have thought about doing that just to see if they really know how to read.

We continued the appointment and physical exam. That was the first really complete physical exam I have had since the ER doctor checked me. He explained a few options that normally help with complicated migraines. They start with one of the least invasive and go from there. I was thinking there was nothing else to do, but they have other options, which was nice to hear. For starters, he wanted to try to get rid of the migraines by putting me on a 10 day regime of steroids. That is supposed to break the cycle and hopefully take care of the neuropathy (my crooked smile among other things).

I took the first Prednisone last night before I went to bed. I recall that when I took it for the chemo, it made me a little light headed and gave me a "stuffy head feeling". I was also prescribed a "psycho" drug to help me sleep, because the steroid tends to keep you awake. I love how the pharmacist looked at me when he was explaining that one in his "Indian accent", "Okaeee, theese wun is wheen yor mude eez not so gude" as he so gently put it. I almost started laughing, but that would just prove that I really am psychotic.

I did wake up with a complete smile, that hasn't faded, and my brain is going a million miles an hour with new ideas, I had the urge to blog, run, swim and do cartwheels (okay maybe cartwheels is pushing it), but I do feel more like my normal "self". The steroids are causing me to feel a little "fuzzy" and stuffy, and the "psyco" drugs definitely helped me sleep. I didn't wake up until 5am. I had some crazy dreams, but I am just happy that I woke up feeling like I actually slept. The neuropathy has faded to almost nothing. I haven't done any physical activity yet. That will be the true test to see if the numbness returns.

Well, I really have to get back to work and write down all my ideas before they slip away.

BTW-I forgot to mention that it was EXACTLY one year ago that I finished my chemo.

It has been awhile..

2009-09-06T07:12:00.002-07:00

I really haven't had the urge to write. It isn't really the "energy" to write, it is lack of desire.

The visit with the neurologist went well. He was very nice and spent almost an hour with Mike and I discussing my symptoms and history. He came to the conclusion that it was caused by "complicated migraines". He said that they don't always have to be painful (mine weren't) and they can mimic TIA like symptoms, which mine did. He gave me a prescription for an antihistamine that he said would take care of the symptoms immediately if they were caused by the complicated migraines.

I picked up the prescription in Phoenix and started taking it that evening. I didn't really notice a whole lot of difference in my left sided weakness, but the medication caused me to have severe headaches, so by day 4 I had to quit taking the medication. Isn't it ironic that I was given medication to combat "complicated migraines" that I didn't have any pain with and it caused headaches. It would almost make me laugh.... but it doesn't.

So I called the doctor in Phoenix and told the nurse that the medication didn't work. I wasn't too concerned, but then I did start having headaches along with the symptoms. I never heard back from them, so I called again. For some reason, the doctor didn't get the message and so nobody ever got back to me. They then gave me a prescription for Topamax, which I started taking and immediately felt better the next day. With Topamax, I started out with 1/2 pill, then was supposed to work up to 3 pill per day by increasing the dosage each week.

I couldn't even believe the difference the Topamax made. I was really excited that something finally worked. I felt almost 100 percent better, minus a few minor side effects. My smile was normal for the first time in months and I felt like my brain was functioning like it was supposed to. When I get excited, I always feel like dancing or doing cartwheels. I really felt that good, but the fourth time I took the medication, I had a "minor" allergic reaction. I was having trouble breathing, tremors, my temp went to 96.6 degrees and I was having difficulty speaking. I say it is "minor" because I could still breath, walk and talk (kind of). That reaction passed, but I had to stop the medication.

Anyway, I am pretty much back where I started. I still have a lopsided smile and I stumble occasionally. I only have painful headaches sometimes, but I do find it hard to concentrate and I have memory lapses. I know, everybody says, "that is what you get when you get old", but it is a little more than that.

So, here I am again, waiting to hear back from the doctor.

Finally...

2009-07-10T04:39:00.003-07:00

After several calls and lack of calls from the office staff here in town, I finally have a follow up appointment with the neurologist at Barrows in Phoenix. The appointment isn't until July 21st, but I guess that is the best they can do. It normally takes 2 months.

The new seizure meds, Lyrica, I was put on make me feel like a complete zombie. They don't make the symptoms go away, they just make me not care whether or not I am having any. "Good drugs man...."

The doctor here says it may be a "complicated migraine". If that is true, why did it come on suddenly? I don't buy it. I have never had a migraine in my life, and rarely get headaches. It just seems like the "easy" answer to something more complicated.

Follow up

2009-07-06T20:00:00.002-07:00

Well, it is confirmed that there is definitely "nothing going on" in my brain. The EEG didn't show anything abnormal,so that rules out epilepsy. I am still not any closer to getting an answer, just ruling out one thing at a time.

I have been having problems with hip/back pain and my asthma, so the doctor changed my meds. I am still having left sided weakness and started having problems with the right side of my face today. My smile is really wacky now.

The neurologist in Phoenix is out of the office this week, so the doctor here was going to see about a neurologist in Vegas.

Still waiting....

EEG

2009-07-03T04:11:00.002-07:00

I had the EEG done on Wednesday. I have a follow up appointment on Monday to get the results. I wasn't scheduled to see the doctor on Wednesday when I had the EEG, but I met him in the hallway after I came out of the EEG room. He asked how I was doing and I told him that I was still having several episodes. He asked if I had made an appointment with a specialist. I informed him that the neurologist at Barrows wouldn't set up an appointment until they reviewed my chart, and that it may take awhile unless my current doctor thought it was necessary to expedite the appointment. He told me to have my hospital chart over-nighted to the specialist at Barrows and he would call them to try to get me in next week.

I haven't heard from the neurologist at Barrows yet, but I intend to give them a call today to see if they received my chart.

The episodes are quite frequent, but not debilitating. I have a crooked smile and my balance is off. I have been more tired than usual, but that may have to do with the medication. Yesterday I also had an asthma attack along with one of the more severe episodes. I haven't had problems with my asthma in several years, so I no longer have an inhaler. Mike was ready to take me to the ER, but I "breathed" through it. I suppose I should go get an inhaler just in case it happens again. I figure it has something to do with the other meds that I am on.... this is a classic case of piling on more meds to treat symptoms caused by other meds.

Have you ever gone to bed wondering if you will wake up the next morning?

Are you Kidding me?!!!

2009-07-01T05:55:00.002-07:00

I was so sure that everybody was correct when they kept telling me after my cancer was diagnosed... "a year from now you will have perfect boobs and this will all be behind you." Yeah right! I almost believed it.

I haven't blogged since my life has been so blissfully boring! Boring is good for me, bad for blogging. I started on Facebook just to post day to day "blah" stuff. I bet you already guessed that my boring life has produced a minor twist. My mom said, "I keep getting calls from everybody, maybe you should start blogging again." So here I am...

I was admitted to the hospital Monday, June 22 for left sided weakness. And this is how the story goes...
I was at a swim meet on Sunday and had some numbness in my left foot and I was a little tired. I really didn't think too much about it. I figured I had been out in the sun all day, and I was wearing sandals that I don't usually wear.I went to bed early on Sunday, and I woke up at around 4 a.m. on Monday. I did my usual routine, which is make coffee and go out to my shop to do some work. I messed around on the computer for a little bit, then started working on my decals around 5 a.m.. As I was working, I felt a twitch in my left eye and noticed that my jaw felt numb. I got up and looked in the mirror and noticed that they left side of my face was drooping. I went and woke up Mike. By the time I woke him up, it was starting to go away and my smile was returning to normal. I wasn't quite sure that I wanted to rush to the Emergency Room, so I called a friend that is an ER doctor and asked his opinion. He asked me a few questions and told me that I should be seen that day. Shortly after I got off the phone with him, I had another episode of left sided facial droop. This time Mike was awake and noticed it. We decided to head to the ER.

I checked into the ER around 6 a.m. and they actually got me in fairly quickly. Luckily they weren't too busy. The doctor did an assessment and noticed a left side deficit. He ordered a CT, MRI, EKG, Carotid Dopler, Chest X-ray and bloodwork. It all came back negative, so they admitted me to hospital for observation. They assumed I had a TIA. I was admitted around 9 a.m. to the 3rd floor. The ER doctor had ordered 4 baby aspirin to decrease my chances of having a full stroke. The only problem is that I never got the aspirin. The ER nurse had documented that I got the aspirin, but it was never given to me. I can kind of understand them not believing me, but Mike was with me the entire time and knew that I never got any medication in the ER. So, I never did get the 4 aspirin. I was admitted by the Hospitalist, who was very pleasant, but was a bumbling idiot. I couldn't believe he was actually an M.D.. Maybe he would have done better if he would have stayed at a Holiday Inn Express. They did notify the neurologist for a consult.

They ordered numerous tests, including a complete cardiology work up, checked my thyroid. I had another CT and a TEE, which checks for clots or holes in the heart. Everything came up negative. I was released on Tuesday and put on blood thinning meds, anti-seizure medication and another med for cholesterol.

I am still having periods of left side weakness and facial droop. I am going for an EEG today and will be following up with a specialist in Phoenix. Hopefully I will have some answers soon.

Cutest Little Lizard!

2009-02-25T18:18:00.001-07:00

Isn't this the cutest lizard ever? It was on the neighbor's wall.

Yesterday I tried to get a picture of a couple of coyotes walking down the street, but I wasn't able to grab my camera fast enough... Do we live in the desert or what?!!

A Little Less Than Perfect

2009-02-19T19:38:00.002-07:00

It is hard to explain why I am not completely happy with my final surgery. It isn't that it doesn't look good. They do look good, but I wanted perfect. I know better than to expect perfect, but after going through a year of hell, I figured I might get a little more than "good".

I came up with an analogy (mostly for guys) for those of you that don't quite get where I am coming from.... so here it is...

Let's say you decided that one year from now you are going to enter a triathlon. You want more than anything to win, and you figure it is an obtainable goal. You are willing to do whatever it takes to win, so you get a professional trainer and start training every day. You change your diet and eat nothing but healthy natural foods, you avoid fast food and turn down yummy desserts.

The day of the race finally comes, and you are expecting great things from yourself, because you know you have worked hard to achieve your goal. As you are warming up on your bike, you crash and bend your derailleur. The derailleur is hanging a little lower than it should, so the bike mechanic says that he can fix it, or you can use your mountain bike as a backup, but your mountain bike has two flat tires, and even if you fixed them, it would be slow. You decide that you will have them try to fix the derailleur. It is fixed, but the bike mechanic says don't put too much pressure on it when you are switching gears, because it might break again.
You aren't super happy, but at least you are still in the race. After all that, your trainer comes up to you a hands you a thong. You look at him like he has lost his mind. "What is this for?" you ask.
"That is for the swim portion of the triathlon" he replies. "It will help keep everything in place, and make you swim faster."
You are a little on edge because of the bike problem, so you understandably throw it at his head and tell him to wear the &%*@ dental floss.
The race finally starts and you finish with a really good time, but you didn't win. You are a little pissed off because it was your goal to win and you didn't, therefore you lose.

The End.

So, even though the twins look good, they aren't perfect. I am sure that I will get over it, but it just seemed like for an entire year I was looking towards this one "goal" and I didn't reach it. Normally I wouldn't care whether or not I even had breasts. It really isn't about the boobs. It is more about looking forward to getting something, then being told you can't have it.... "I know you REALLY wanted this Harley Davidson, but will the 250 Honda Scooter work for you?"

Do you get it?!!!

All Done...

2009-02-13T19:22:00.002-07:00

The surgery went well, I was home by 1pm. I didn't have any pain, except for a sore throat from the anesthesia... go figure. Maybe if I had a little pain, I would slow down a bit. It is hard to stay still when it doesn't hurt. I didn't swim, bike or run, I just did a 4 mile walk... I want to go easy.

So, hopefully everything will stay where it is supposed to, and I can get back to "normal" in a month or so.

I am getting my chemo port out on Monday, then I have a follow-up visit with the oncologist in March, from there, I guess it will just be occasional check ups, blood work and MRIs.

Surgery Day

2009-02-11T03:46:00.002-07:00

I am going in this morning at 5am for what will hopefully be the final surgery. I can't have coffee, so I am sitting here with a cup of coffee grounds, that I lift up and occaisionally inhale.... hey whatever works, right?

Since I ripped the one side out, and it feels to me like it is hanging down to my belly button, the plastic surgeon will be using a "lift kit" to try to bring it up and try to make it even with the other side. The physician looked at me and said "Susan, it isn't hanging down to your belly button." He proceeded to get a ruler and measure the distance it was off from the other one. It was about an inch, but it seems to me more like 3 feet. He said that one of the options would be to lower the left side to match the right side. ARE YOU KIDDING ME!!!??? This is the only thing that I have had to actually look forward to throughout the entire year, that I was going to get new improved boobs, and you are telling me to compromise.... NO FLIPPING WAY!
I was ready to rip it out and start over if that is what it was going to take, but he said that he though he could do a decent job of bringing the left side up. He said it is more difficult, but doable.

So, I guess you consider it as my water breaking! (You know, get it? The expanders are filled with water) And I will be bringing home the twins today. I will have to let you know if they are colicky.

Oh, and one more thing.... the doc banned me from any strenuous physical activity for 6 WEEKS! No Swimming, running, biking.... he said I could walk. He said that he tells most of his patients 2 weeks, but for some crazy reason, he thinks I would over do it.... hmm, wonder why?

Happy 12th Birthday Hailey

2009-02-01T06:25:00.003-07:00

This is for Hailey...

Helga and Gertrude...

2009-01-31T04:46:00.003-07:00

I am going to have my FINAL reconstructive surgery on February 10, 2009, almost one year to the date that I found my "lump". I have decided that I am going to name my new implants Helga and Gertrude, then I can lovingly refer to them as "the twins".

I have been checking out sizes, so now when somebody asks what size I am getting, I look at them and say "Yours look good, can I see them?" ... this only works when it is a female asking me the question. (Most of the time anyway, I have seen a few guys that have bigger breasts than I do.) I have even asked a couple people to come to the office with me, so I can say "this is what I want". I can't believe they turn me down.

I am really ready to be done with spending my life in a doctor's office. It isn't that I don't like my doctors, I do, but I really hate waiting in the office, especially if I don't have a really good book... which brings me to my vision...

My eyesight in the last year went for "so so", to "why do they write things this small?" I got my eyes checked, and she said I need "readers"... What? That is what OLD people wear! I guess I am going to have to give in and get some. I think purple with yellow polka-dots would be nice.

Next time I write, hopefully I can tell you about the new "twins". :)

No Sugar Added...

2009-01-26T05:19:00.003-07:00

I realize that I haven't blogged for several days. I hear from people that I don't see on a daily basis that they keep up to date by reading my blog, so I guess it is only fair to write something.

I was getting REALLY tired during the day, so I decided to implement some diet changes to see if it would help. The first thing I did was eradicate, (NO NOT COFFEE) sugar from my diet. I completely cut out anything processed with sugar. Including soda and imitation sugar products. I figured I would cut out EVERYTHING just to make it easier. I did this the week before Christmas... do you KNOW how many sugary products are around at Christmas!!!? It wasn't easy... I did have a half of a piece a fudge or chocolate per day. This is the first time that chocolate products have lasted more than two days in our house. I actually still have some chocolate covered coffee beans from a month ago. That has NEVER happened!

Breakfast hasn't been easy. Have you ever tasted oatmeal without sugar? It's disgusting! Take a look at the list of ingredients on your cereal box. The second ingredient in most cereals is some form of sugar, including the so called "healthy" cereals. I know, fruit is good.....

I have had a lot more energy during the day. I am still exhausted after dinner, but I think that has more to do with getting up at 3:am, not my diet. I eventually want to cut back on my coffee intake... I actually have. I am down to one pot of coffee per day. :) And I want to increase the water I drink. I think that would really make a difference.

Anybody want to join me??? It would be fun! We can call it the "Winter Sugar Challenge".

Can you say "Cantaloupe"?

2008-12-23T04:13:00.003-07:00

I got my breast expanders filled. I would give you the cc amount, but that would be meaningless to most people, so....
......go to the grocery store and pick up a medium size cantaloupe, cut that in half. When you cut it, make sure you are off just a little (because they aren't even), hold those up to your chest. You want half of the cantaloupe under your armpit and a two inch gap in the middle of your cantaloupes. Real SEXY huh? Now... try and get your Speedo on and go to the pool and see if anybody notices that your breasts just doubled. I still don't understand why women would purposely do this to themselves. Could somebody please explain?

Hopefully I will only have one more expansion, then I can go in and get the permanent implants. I have to wait for the skin to stretch, so it won't be until I will February or March. Then I can get my face taken care of, because I am afraid I will probably fall on my face if he fills them much more.

I am going to think positive... when I get done, my speed in the pool should double. They are kind of like a built in "drag suit".

Okay... I am off to go swimming!

Back to Palm Springs

2008-12-20T04:59:00.002-07:00

I had a follow up visit with the oncologist in Palm Springs yesterday. It went well. My labs are back to normal. The results of the tumor markers weren't back, so that is the only thing that I don't know yet. I have to go back in March for a MRI and check up.

I really haven't felt like writing.... it seems too depressing, so I don't do it... sorry.

Updates:

I have been staying busy with the swim team
My hair is growing like crazy ( a little faster than normal it seems)
My eyebrows need plucking and my eyelashes are back
I hate hot flashes - It is kind of like being locked in a dry sauna with no way out.
I think I got used to the bald look... and no hair drying! I think if I keep on coaching 5 year olds, I won't have to worry about having any hair.
I am finally working on something for myself.... check it out! www.swimmerdecals.com

That is all... Merry Christmas!

Post Surgery

2008-11-09T05:04:00.003-07:00

I thought I was doing pretty well on Thursday, but I started to run a fever that lasted through last night. I didn't have any pain from the surgery, but I was wiped out from the fever, and I am assuming that just by the way I feel, my blood count probably dropped again. I am having excessive hot flashes, but no fever so far today.

I started my Tomoxifen yesterday, so that may be why I am having hot flashes again. They started to subsided last week, so I wasn't experiencing them constantly. It was a nice change of pace.... almost back to "normal".

I guess everybody is correct, that you have to get a new "normal". I just wish that I could settle down long enough to know what that is.

I find it a bit odd, that whenever I don't feel well, my taste buds revert to "Hawaiian shaved ice, cotton candy,ginger ale, chicken strips and instant mashed potatoes with gravy". What is THAT all about?

BTW- My hair on my head, eyebrows and eyelashes are coming in quite rapidly. No underarm hair growth yet... yeah!

That went weawwy well...

2008-11-05T18:16:00.002-07:00

I called a friend and tried to leave a message that the surgery went well, but I was having a hard time talking. She probably was thinking it was Elmer Fudd leaving messages.

Oh well... I am going to go get some West and wewaxation at wast!

It really did go much better than I expected. I came out of the anesthesia easier this time, and that was my biggest worry.

I got a call from the Palm Springs scheduling, and I will be seeing the oncologist December 19 for my f/u visit. It really makes me feel more at ease.

Brittney's Birthday was today. She is 19. When I turned 19, it was the legal drinking age. I must not have had too many friends, because I remember my Dad's friend that I used to babysit for, took me out to the bars and gave me "shots". I think I did some dancing to... for some reason I don't remember much.

I Don't Want to Go Rick....

2008-11-05T00:31:00.002-07:00

I had to get up before midnight to do my pre-surgery ritual of drinking the last cup of coffee. If you have ever experienced a caffeine withdrawal headache, you would understand.

When I talked with the surgeon on Monday, he was originally going to replace both expanders, then when he examined me, he said he was just going to replace the one that leaked. Hopefully he will stick with that. I am going in at 7:30 a.m., my surgery is scheduled for 9:30 a.m.. I am going to bring my Ipod and a book just in case I have to wait 8 hours, only this time, I am not putting the stupid ted hose on until they wheel me to the waiting area, and I am keeping my underwear on.

I decided to return to Palm Springs for my follow-up care. I just feel that they are more knowledgeable there, and they know who I am. Even after 5 months, the receptionist and nurse both remembered me after only meeting me one time. The receptionist said, "Oh yeah, how did your husbands picketing go during the surgery?" I had told her he was going to hold up a sign that said "Save the Nipples!" I am not sure if that is how I want people to remember me, but she did remember! The girls in the office in Havasu saw me every other week for 4 months, and they still don't know who I am. And, I can't guarantee it, but I bet the doctor doesn't get me confused with another patient.

BTW- My hair is growing quite fast, and my eyebrows and eyelashes are filling in. Hopefully I will have enough hair soon so that my swimmers will stop calling me "Coach Russ".

*Note- the title was borrowed from an SNL skit. Hailey and Brittney say that all the time.

"Do Not Wash in Hot Water"

2008-10-28T03:16:00.003-07:00

They forgot to give me the instructions for the expanders. They didn't tell me they would shrink if I washed them in hot water. I guess I shouldn't have taken that hot shower!
Actually, the truth is, when the doctor filled it the needle punctured the expander, so I "sprung a leak" on one side and I am now back to a crinkly, sagging bumpy lump of flesh for a boob. It is quite attractive if you are into that sort of thing. I am quite lopsided- it looks GREAT in a swimsuit....not! I wonder if the new Speedo competition suit would take care of that.

So, anyway, I have to go in for another surgery next week to replace the expander.

To top things off, my computer crashed the same time my boob did, so I took that to my computer guy to get it fixed.(My computer) Too bad he doesn't fix expanders.... "Here, do you think you can fix this to?"
He doesn't think I lost any of my data, which would be good, because I am not the best at backing up my stuff. I backed up a lot of it, but not everything. I think I am way beyond the point of crying... I am too numb to care. But I did learn not to ask "What Else?" I did that, and the contents of the top shelf in my cabinet landed on my head.

On a positive note, my hair, eyebrows and eyelashes are coming back quickly. I have a "5 o'clock shadow" that the kids at swim enjoy "petting". They had better watch out, sometimes I bite.

Fill 'Er Up!

2008-10-24T02:24:00.003-07:00

Well I got my first "fill" in my expanders... 250cc on each side. They are already bigger than what I had before the mastectomy, and I go back in for another fill in a couple of weeks. I am glad that I don't have dented breasts, but I felt a little self conscious when I put my swimsuit on to go to practice. I almost wore a drag suit or my rashguard, but Brittney convinced me that they didn't look over sized. I don't know what I am going to do when they get bigger. It is kind of like breast feeding all over again, but they are filled with saline instead of milk.

Maybe people will quit calling me sir, or they will just point and say "check out the dude with the big boobs". I guess I should wear pink.

My hair is already 1/4" long, except for my two "long" hairs that are 1/2" long. (I really did take a ruler to measure it.) I am also starting to get itty bitty microscopic eyelashes. I can't see any eyebrows yet, but hopefully they will be filling in soon.

I am getting more energy back. I would probably be even better if I could sleep past 1AM.

PS. I made sure I didn't take a hot shower.... I don't want anything to shrink, so I wash in COLD!

Happy Halloween From the Pumpkin Patch

2008-10-23T11:18:00.000-07:00

Tastes Like Chicken!

2008-10-20T06:17:00.002-07:00

Mike, Tina and I have been walking Hailey to school in the morning, and Mike enjoyed it so much that he wanted to continue walking while Hailey was on break and on the weekends. We start out at around 6 a.m. when the sun is just starting to come up, and we always see the same walkers. One of the walkers that we see in the morning asked if we had seen the pack of 7 coyotes. I told him that I had seen them one morning, but Mike and Tina weren't with me when I saw them. After we talked to the man, and continued on our walk, Mike mentioned that maybe he should carry his BB gun in case we run into the coyotes. I laughed at him and said, "So you are going to walk down the streets carrying a gun?"
Mike replied, "Yes, what if they try to eat Tina?"
I told Mike I would tell the coyotes, "Take the tall guy, he tastes like chicken!"
I think I hurt his feelings. :}

Anyway our walks are going well and we haven't been eaten by coyotes yet.

And the Results are....

2008-10-19T05:28:00.004-07:00

....Positively, most definitely yes, but maybe not. Okay, let me explain. I got my results for the hormone tests last week from the oncologist, which for a normal person, would show that I was in menopause. Dr. O was all set to put me on the new aromatase inhibitors for the next five years, instead of the Tamoxifen for premenopausal patients. So Mike and I both questioned whether or not the test could definitely tell whether or not I was in menopause. I did some research of my own, and chemo can put me into a temporary menopause for up to a year. I am having hot flashes, but they are getting better and I felt as though I was still ovulating. (TMI for some, but those of you that have pain during ovulation know what I am talking about)
So..... to make a short story really long.... he gave me the prescription for Femora (the aromatase inhibitor) but told me not to fill it until I talked with my OB doctor, which doesn't work on Fridays, so I will have to talk to him Monday. My hunch is that I will be on Tamoxifen until they know for sure I am in menopause.

The results for the genetic testing for iron-overload didn't come back, and the results of the liver ultrasound weren't back. I have an appointment with the gastroenterologist on Monday, and hopefully will get the results of the liver ultrasound.

As for the WBCs and RBCs, my red blood cell count is still low, and I am still anemic, which I can tell, because I get tired quickly, but my white blood cell count is above normal because of the Neupogen shots, but that should level out and hopefully stay where it is supposed to. The chemo nurse said it could take from 3-4 months before I started feeling "normal" again. I forgot what "normal" is, so I am really looking forward to that day!

My hair is growing like crazy...

2008-10-15T05:07:00.003-07:00

...both of them! :0 I have two dark hairs that stick straight up right on the top of my head. They seem to be growing at an advanced pace compared to the rest of the peach fuzz that coats the remainder of my skull. It is going to be time for a haircut soon.

I am finding that the bare skull can be a little cool as the temperature drops, so the other day I tried out a funky but comfortable beanie that one of the lady's from the morning swim session gave me. It is made out of multi-colored soft furry stretchy yarn. It kind of resembles a punk hairdo. When Hailey saw it, she said I looked like a clown, and Mike tried to refrain from laughing out loud. I then decided to try one of the wigs with another beanie. Hailey then told me I looked like a homeless person. I didn't want to stop at homeless, so I put the multi-colored hat on with the wig and came back out to show off my new look. Hailey said "Now you just look like a homeless clown".

I think I will stick to my plain gray soft beanie.....