Race for the Cure October 2 in Vinoy Park, St Petersburg, FL

Yes, I am walking the 5K. My friend, Lee Bice, is walking with me. I joined the St Anthony's team, since that is where I was treated and I feel I know them so well. I hope that was proper protocol. Guess I'll find out. Below is a link to my Race page:

Race for the Cure

I guess I better start training.

Melatonin 4mg isn't working for me. I still wake up after 3-4 hours but I am groggy. Sigh. I heard there is a time-release one so that will be my next step. Sigh. I really need to get some sleep. It's killing me slowly.

Melatonin is a wondrous thing

I finally got a shrink appointment for next Tuesday and I took the advice of friends and started taking 2MG melatonin before bed since Tuesday. Believe it or not, I actually slept 6-8 hours each night!! The nice thing is, it is natural and even can kill cancer (although the therapeutic dose is 30MG...I would be a zombie with that much in me). Fingers crossed.

Another interesting thing. I stopped eating peanut butter as peanuts are estrogenic. But Wednesday, I ate two slices of toast with crunchy peanut butter and noticed my stools were less watery. ??? Did the same yesterday and actually went 24 hours with no bowel movements! Not since March has that happened. So peanut butter is on the menu for a while.

My cousins Cindy and Mike are coming today from Texas. My mom's 80th birthday is tomorrow and I am taking her (and everyone) to the Rays game. It is a concert series night so after the game is Adam Lambert. Should be fun. She doesn't know my cousins are coming so that should be a great surprise for her. AND Marty 's band is not playing until Sunday afternoon at the St Pete Pier so he can come. Sunday will be fun, too.

Not sleeping...not good

You know, it's never good when you can't sleep and I have probably 3-4 nights per week where I fall asleep fine then am awakened either by diarrhea or dreams of breast cancer. Ugh. Don't know which is worse. Those nights, if I manage 3-4 hours, I am doing great. I toss and turn for 2-3 hours then surrender and get up.

I think I figured out that I am suffering from PTSD. This whole BC thing is very stressful and the thought that never leaves you is "What if it comes back?" Anyway, I took the bull by the horns and called the American Cancer Society and asked for a referral to a breast cancer shrink. They called me back three days later (good thing I'm not suicidal) with a phone number for a Dr. Jimmie Holland. I Google her and her website is basically promoting her book on how to deal with breast cancer. She is in NY so I can't see her. I suppose they will press me to read the book then I will feel all better.

So called the onc to get a referral. They called back and said they had a shrink on staff in the onc practice and they would have her secretary, Mary call me. This was at 10 AM. It is now 5 and no call. Again, good thing I am not suicidal.

I recently had a genomic assay done to see how I metabolize various drugs. Can't take anti-depressants. Pain killers need to be administered at 1/8 the dose otherwise, I am gone for 24 hours on 1 pill. Plan to take the test results to the PCP so I can ensure he checks this before Rx-ing something.

A fine mess I am, eh Ollie?

Here we go again

Well, visited PCP doctor Monday about the diarrhea and told him I had no faith in the gastro doc since he could have killed me. He suggested going to see him to find out why he wants me on the steroid, since I do not have IBC or Crohn's. After we get the answer to that, I can switch gastros (got a great reference from a coworker) and keep on trucking.

So I go see him this afternoon. It'll be interesting to see if he treats me with kid gloves (like everyone in his office since the RX screw-up). I guess with this being a litigious society, he should be worried. I won't sue him because everyone screws up but I hope this serves as a wake-up call for both him and his staff (who should have doubled-checked his order).

All in all, feeling OK if I could only get the diarrhea solved. But I am feeling very depressed and short-tempered. From what I have read, these feelings are most likely PTSD. Sigh. Another doctor. But I really need to address it, as it is getting worse and worse. I'll make an appointment for next week.

Hope everyone has a great weekend!

Aaaahhh! 4 days away from Breast Cancer!

Marty and I headed south to Anna Maria Island and the Harrington House B&B last Sunday. We had a lovely gulf-front second floor room with a huge open porch overlooking the gulf. We came home yesterday afternoon all rested and relaxed.

Here is how the days went: AM - wonderful B&B breakfast with fabulous homemade breads - coffee on the porch and reading - PM - dip in the pool - hang around the pool and read - drink a cold beer maybe or just water - afternoon nap- Evening - shower - head out to one of Anna Maria's 5 star restaurants - chow down and head back - look at the moon and the stars - to bed.

Nothing like 4 days/nights doing pretty much nothing. I didn't think about BC during the day but I still dreamed about it. Ugh.

So back to reality and the colonoscopy biopsy found no cancer. Great, I guess but what's up with the diarrhea? So the gastro called in an Rx. I went to pick it up today and insurance won't pay for it (my cost=750.00). ARGHH! Looked up the drug online and it is used for people with ulcerative colitis and Crohn's disease. But the real kicker is, it has sulfa in it. I AM ALLERGIC TO SULFA AND EVERY DOCTOR I HAVE KNOWS THAT!!!!

So what I want to know is:
Whose job is it to check the drug allergies in my chart before calling in a prescription? Whose ass would have been fired when I ended up in the ER after taking one of those pills? Whose insurance would have had to pay for a hospital stay to treat me? Who would have had to sue to cover all the extra expenses? Who HATES the whole tort thing but would have had no alternative?

The moral of the story is: TRUST NO ONE! And be sure to read all contra-indications on any medicine you are prescribed. BTW, After I left a rather ascerbic message around 11AM yesterday, the nurse practitioner called me back at 4:30 PM and said he would prescribe another drug. She told me what it was and I told her I would check it out and get back to her. Needless to say I am very wary of anything they prescribe. I checked it out and it is a steroid. Not wanting to take steroids (steroids for diarrhea? steroids make me GET diarrhea!) so I made an appointment with my PCP. He is on vacation so I can't get in until the 30th.

So I am hanging loose for the weekend then Gyn Wednesday then Birmingham that evening. Back to town late Thursday. On the road again and it feels great!

Thank the Lord that's done with!

It is true what they say about colonoscopies...the prep is worse than the act. But remind me not to let them schedule the stupid thing for noon (or later). While sitting in the waiting room, I was ready to rip off some one's arm and start gnawing. I was SOOOOO hungry. I had not had solid food in 43 hours at that point. And jello and broth doesn't exactly cut it in the hunger-slaking department.


Anyway, they were running behind. Nice. Finally went in around 1. By the time we got home, I was still shaky from the anesthesia so I settled for some toast and chicken noodle soup. Nectar of the Gods! Had to take a nap and really didn't feel 'normal' until the next day but boy oh boy did I make for lost time in the eating department. I ate everything I could lay my hands on.

On Sunday, I did run to Publix and picked up some Jello. At least I could chew it and pretend it was food. I will NEVER eat Jello again.

So the verdict after the test is 'everything looks fine'. Not what I wanted to hear but he did take biopsies. Should have results some time next week. We will be on vacation and all that stuff can just wait until we are back.

So Tuesday I had a DEXA (bone) scan. I asked for it since the onc wants me on Arimidex. In fact, he wrote the Rx already. I didn't fill it yet and might not ever fill it. Jury is still out. I see a holistic GYN on the 25th. She worked with a friend of a friend with breast cancer and helped her regulate her hormones. If she can help me with that, I am good to go and no 'A' needed. Fingers crossed. While I REALLY don't want to take that poison, I REALLY don't want the breast cancer to come back. I am sort of of the position that at my age, it's all about quality of life and not so much quantity.

Prep Day - Uggghh!

Ok, the directions say to take 4 dulcolax at noon then start drinking the stuff at 3. Well, I want to go see the band and they play from 2-7:30 so I took the laxatives at 9:30. Started drinking the stuff at 10:45. Ugh. Double ugh. I drank the entire half gallon. YUCK! Made me gag, as 64 ounces of liquid is about my total liquid intake for 4 days!

The stuff really does work, though. I will be clean as a whistle. The bad thing is the actual procedure isn't until noon (I have to be there at 11). It is now 2:30 and I am STARVING!!! (Done with the bathroom, but starving). They told me clear liquids from midnight last night and nothing after midnight tonight. I already drank a can of chicken broth. Didn't even touch how hungry I am.

The surgery center did tell me beer qualifies as a clear liquid. Maybe after I get two or three in me, I won't mind being so hungry. Hey, just saw that jello is on the OK to eat list. On my way to Publix. At least I can chew and pretend it is filling me up.

No Cancer Dreams!

Last night was the first night I had NO cancer dreams!! Could this mean that life AC (after cancer) is beginning?

So after my day spent with the vampires, I had to head to TIA for a trip to visit a prospect in Birmingham. It's a cool town but this was a quick in/out trip. So the plane was supposed to leave at 6:50 and arrive at 7:30 (they are Central time). We board (plane was 15 minutes late) and then sit there for 2 hours. Nice. Finally get to Birmingham at 9:45. By the time I got the car and drove to the hotel, it was 10:30 (11:30 for me). I am starving but it's too late. I crash.

Up in early AM and chowed down on the breakfast. Then off to prospect who is supposed to be 4 blocks from hotel. I allow 30 minutes to get there to be on the safe side. Can't find it. Call salesman (he drove in) only to find my address is a satellite office. Back to hotel business center and Google maps. Off I go. Fortunately, it is only 10 minutes away. Whew. Ended up 25 minutes late. HATE to be late.

Back at the airport for a 5PM flight. Supposed to get into TIA at 7:30. We board...and sit...and sit...and sit. Finally we take off and land at 9:30. Home by 10. So I had two 12 hour+ days in a row. Ugh.

But yesterday was great. We went to the marina and joined friends Betsy and Tom on their boat. We motored over to Gulfport and docked. They were having their Art Walk (first Friday) so we walked around, listened to different bands then had dinner at Backfin Blue. LOVE their crabcakes. Then back to their condo for Key Lime Pie then home. A great evening.

Tonight is GreenFlash at the Porpoise Pub then tomorrow is....

Prep for the colonoscopy. UGHHH! The doc was going to make me drink a GALLON of that stuff but I put my foot down and said:
'Look, I weigh 110 lbs. I have had diarrhea for 4 months. If I drink all of that you will be visiting me in the hospital Sunday afternoon.' Mind you, a gallon is what they give a 300 lb person to drink!!!

He relented and said 1/2 gallon. Right. I am doing a quart, maybe. That will be plenty. So the center called me up to remind me and to tell me clear liquid diet Sunday, nothing after midnight. Marty's band is at Jimmy B's 2-7:30 so I asked her if beer was a clear liquid. She said yes but to overdo it. So I am doing the clean-out in the morning then heading to Jimmy B's around 4. Should be mostly OK by then.

Marty is taking me to the center. The stupid thing isn't until 11. I will be VERY thirsty by then.

A Day with Vampires

So I showed up at the onc's office at 9:30 to be greeted by his crew of attractive female vampires. First they weigh you then they blood pressure and temp you then they bite you (I mean stick you). Only one tube this time. Then I hung out and waited for the onc. This one is easy on the eyes also. He came and we discussed me taking Arimidex, which I really don't want to do but it can help me prevent recurrence so... anyway, I asked him to test my estrogen, etc levels and he agreed. I about fell on the floor! Really didn't expect that.

So he gave me the scrip, along with one for Ambien (having problems sleeping) and off I went. While paying the copay, the vampire came out and said she needed another tube. ARGHHH! I had a demo in 20 minutes so I told her I would have to come back.

Did the demo and back I went. She tried to bite me in the same vein. No dice. So on to another. That one worked. 15 minutes later, I'm gone.

Finishing up interview questions then off to the airport and Birmingham for a meeting tomorrow.

The good news is: I do not have to see the vampires until November. YAY!

A post from Dr. Vincent Tuohy - Cleveland Clinic

I am proposing a national initiative to develop a vaccine program that protects us against adult diseases like breast, prostate, ovarian, and colon cancer in the same way we were protected as children against polio and measles. We have a giant and obvious hole in our health care by facing adult life with no protection against these hideous, and in my opinion, totally preventable diseases through prophylactic vaccination. I am trying to make people aware of this enormous deficiency in our health care and have recently published results from my lab program showing feasibility in mice for developing a safe and effective prophylactic breast cancer vaccine.

This study simply represents a first step and is clearly prototypic and embryonic. However, I think it is feasible to develop such a vaccine for women. If we can do it in mice why can't we do it in women? The single best way (and maybe the only way) to reduce healthcare costs long-term is to dramatically reduce the incidence o f these diseases. The childhood vaccination program provides the instruction manual on how to get rid of diseases, and we simply must apply the same principles to continue vaccination against adult diseases. It is necessary that we do this as a society, that we take the next big step and continue moving forward until we have vaccines that prevent these horrific illnesses.

First, we have to believe it is possible then we need the will, determination, commitment, and resources. Breast cancer is a true and real terrorist amongst us that takes our mothers, wives, sisters, daughters, and friends. It is time for us as a people to prevent this disease because prevention is the cure. Thanks to this discussion group for contacting me. I wish you all good health and much hope.

Doctor day - Ugh!

OK, doctor number one was the easy on the eyes radio oncologist. Remember the one with the arrogant, 'I am God" attitude? Anyway, he is really good so I went. I was thinking this would be the last one, because he doesn't need to do anything to me again, right? I guess I was wrong. I have to go back a month after my one bad boob mammogram in October (which they scheduled for me). I have a both boob mammo in April then the one boob in November. I guess this is the new normal.

So he takes a look and says "You got great cosmetic results!" and I am like, "What, did you think I would end up with a fried boob and a char-grilled nipple?". Anyway, I am glad to see what I thought would be the last of him but it's not to be...yet.

Then on to the gastroenterologist. This is the guy I had when I woke up in St Pete General (after having an emergency perforated ulcer surgery) and there he was. I didn't even know where I was let alone who this dude was. Anyway, I went to him every three months for a year to make sure the ulcer was under control. He told me I would have to take Nexium for life and I told him NFW! I do not have a problem with my stomach. I GAVE myself the ulcer by taking 20 Advil a day for 4 months. I did take it for a year to make sure I healed up OK. After that, I reluctantly let him talk me into an endoscopy to take a look at the ulcer to be sure it was healed and gone. No prob. Then he tries to talk me into a colonoscopy and I was outta there so fast, I broke the speed of sound.

So, today I go to him because my PCP tested my stool and blood to try and find out what my diarrhea is all about. He wanted me to have a colonoscopy. I went to see the dude, albeit reluctantly. So fortunately for me I saw my friend Kas and she said they will have 110lb me drink a gallon of the stuff and that is the SAME amount they had her 220lb husband drink. NFW!! I asked him about that and I said, listen, I have had diarrhea for 4 months. If I drink all that, I will be in the hospital. So he agreed to a half gallon. Right. Maybe a quart. SO these guys don't snooze because they know you will back out so I am headed there next Monday. Ugh.

Having cancer is a PITA.

Next week is doctor week - UGHH!

Monday I see the radiological oncologist. Lucky me. You know from earlier posts just how much the little twerp irritates me. But the good news is - this will be the LAST time I ever have to lay eyes on him (although as I said before, he really is easy on the eyes). One last eyeful then sayonara, twerp!

Following that visit, I go to the gastroenterologist. This is the same dude I had when I had the perforated ulcer back in 2004. My primary care doc is trying to get to the bottom (no pun intended) of my diarrhea and want me to do a colonoscopy. Well, so did the gastro back 6 years ago. I side-stepped that but did agree to a follow-up endoscopy to make sure the ulcer was dead and gone. It was, since I did it to myself by eating 20 Advil a day. No problem with ulcers anymore. So I go see him then he will schedule the dreaded colonoscopy. Having never done one, I can only go on what friends have told me: the prep is worse than the procedure.

Final doctor is my oncologist. I am dreading this one because he will want me to start taking Arimidex. I really don't want to take it but I am sort of ambivalent. On the one hand, it is proven to prevent recurrance but on the other hand it is proven to cause osteoporosis, joint pain and there are MANY other side effects it can cause that are too numerous to list. I am going to ask him if he is going to test my estrogen levels because the drug is supposed to drop them like a rock. I am suspecting he won't do it.

I have a problem with the blanket assumption that the drug works the same for everyone. I am not everyone and I want to know it's working if I am going to poison myself.

So after him, I head to the airport for a trip to Birmingham. I love that city. Anyway, only there for the day then back home.

So Marty is off tonight...shock! A Friday night where we can actually have a date like real people! Have to think of somewhere to go that I really have been wanting to try.

Since I have been taking the B12 supplement, I have tons more energy. So tomorrow is "clean out the garage" day. UGH! But it needs to be done.

Three Year Anniversary and Results of my Saliva Test

Kind of an odd combination: anniversary and test results but WTH. First the anniversary: last year we went to the Grand Canyon (awesome) and year one we went to Key West and stayed in a cool B&B (also awesome). Due to the BC, I had no planning time (or energy) but managed to cadge 4 days off work the week of 8/15. We are going to Anna Maria Island to stay at the Harrington House B&B. We stayed there on our honeymoon and had a blast eating in every 4 star restaurant on the island. This year will be a repeat eating fest (I will TRY to stick to my anti-cancer diet but may cheat with dessert).
Anyway, yesterday was the day and we went to our local fave restaurant, O Bistro. I cheated a little and ate veal (I am sure it was hormone-fed) but no dessert. 2 glasses of Cabernet. Woo hoo!

Now, the test result was very interesting. It is a saliva test that measures hormones. The results and optimal ranges are different than the blood hormone tests and I wish I knew the saliva level for estradiol that taking an Aromatase Inhibitor would generate. I have been taking AI-type supplements as well as eating AI foods. One woman on my BCO forum said her estradiol was 10, which her doc said was great but hers was a blood test. Mine was .7, which the saliva testing company said is low. Optimal for menopausal women is .5-1.7. ??? Sigh. So much I don't know and haven't a clue how to find the answers.
But I will keep plugging away.

Cluster Headaches in late Feb-early Mar lead to BC diagnosis

Well, before the BC diagnosis I had an attack of cluster headaches. I have had 3 episodes of these in the past 6-7 years and you REALLY don't ever want to get these. They are migraines only worse. In me they start out slowly. One a week, then 2 then one a day and gradually they build up to their peak which lasts about 3 weeks. In the peak, they happen 4-5 times a day. Unless you have had a migraine, you have NO idea and even if you have had one, imagine SIX in a row!!!.

For me the only thing that could even touch them was Imitrex. It is a miracle drug for migraine-sufferers. The key is: you have to get the pill down BEFORE the thing kicks in fully. Now these miracle pills cost 25.00 each CO-PAY and my insurance company will allow me THREE pills per week. I am having headaches SIX TIMES A DAY!!!!!. So I am paying out of pocket. Luckily, Walgreens has an Rx program where you pay 20.00/year and they discount all drugs and Walgreens brand stuff so for the standard 9 pill refill I ended up paying 90.00. Not bad but in case anyone wants to know, I spent 1995.00 on generic Imitrex. If I didn't have the money, I would have pawned everything I owned to get the pills.

Anyway, I was coming out of the peak period and was having them maybe 2/day and decided "Gee, it has been a long time since I had a physical and a mammo and a PAP. Maybe I should find a primary care doc and get it done." I have always been healthy..cholesterol fine, BP low/normal. I had a GYN whom I didn't like so hadn't gone to him in 7-8 years. So I pick one and go to the doc. She Rx's a mammo and thus began the BC saga. I had a UTI and she RX'd Cipro, which I took for 3 days and that did it.

So long about this time frame, I develop diarrhea. Very annoying but I sort of ascribed it to the generix Imitrex. Now it is 4 months later and I STILL have it. After I got the BC stuff out of the way, I found a new primary (fired the other one - see The Beginning post) and he ordered a ton of blood tests and stool tests and also a urine test. Those results came back yesterday:
Stool - fine
Urine - mild UTI
Blood - Slightly low red blood cell, very low B12, sugar 100 = high side of normal, cholesterol = high side of normal

So he gave me a B12 shot (YIKES!! NEEDLE!) and told me to take a 1000 mcg supplement. Meanwhile, he has me going to a gastroenterologist whom I see on the 2nd. He wants a colonoscopy. I REALLY don't want to do it but I need to fix this so I am doing it.

Zappage Continued

So happy to have the biopsy yesterday behind me. I woke up this morning and man oh man did my jaw HURT!! There is major swelling (looked like a toothache you see in cartoons) and major bruising like someone hauled off and whacked me in a bar brawl. Come to think of it, a bar brawl never hurt this much. The bruise is about 6 inches and runs from my neck below the jaw joint up onto my cheek. Nice. Fortunately, no client visits so no need to try to cover it up. I can see one of my well-meaning clients trying to do a spousal abuse intervention.

So I have to break down and take an XS Tylenol. (BTW-Had to do 3-4 XS Tylenol per day for a week, that's how bad this thing hurt.) Off I go to the rads. They give me a parking pass and a card with my name and a bar code. She shows me how to swipe the bar code and explains that the board back in the treatment area lights up to let the techs know I am here. Woo. High tech. I go change and sit in the waiting area. As soon as I click on the TV, they come get me. Name DOB and in I go behind the two foot thick walls. Up go the arms, commence prayers then chant "Die cancer die". Done 3 minutes later and since it is Friday, I see the doc. (Every Fri.) So since it has only been two days, not much has happened so I ask him about whether my heart and lung are getting hit. He says no heart and a teeny tiny bit of lung. I ask how much is teeny tiny. He says negligible. I'm like "It's not your lung. " and he basically dismisses me.He tells me he is on vacation next week and he will see me in two weeks. I change and go.

So I wake up on Saturday and have a dry cough. At first I thought it was the stopping smoking. Then I scared the crap out of myself by Googling. So then I was convinced I had radiation pneumonitis, despite the fact that this side effect only shows up 4-6 weeks after treatment is over.

Lesson from Breast Cancer 101: No Googling; research only trusted sources such as breastcancer.org, cancer.org, mayoclinic.org. or you may not make it through treatment since you will either be confined to a loony bin or be dead because you just couldn't take it anymore.

The first full week begins and I settle into the routine. Wednesdays they xray me to be sure the positions are OK, then do the treatment. So the first week passes and I see the substitute doc. First thing I ask him is about the cough. He tells me it must be not smoking because rads can't do that to anyone unless it is 4-6 weeks after. Then I ask him how much lung is getting hit. He says 1%. I ask how many Grays that is. He says 6 Gy. I leave, head home and go straight to Google.

I know, I know. Never go to Google but the good sites don't have what I need to know. I want to know how much my risk for lung cancer in that lung increases my getting 6 Gys of rads. Well, I find out: 25-35% greater chance of lung cancer.

REMIND ME AGAIN: WHY did I quit smoking?

So Marty's band is playing that night and I am tired so I figure I'll take a little nap and lie down at 5:30. I wake up needing to pee and it it 6:45...in the MORNING!!! Man, the radiation fatigue just whammed me. And did the same thing Sat. Lie down for a nap and next thing I know it's morning. So Sunday around 2, I get the overwhelming fatigue washing over me so I lie down and just veg but don't fall asleep. After 15-20 minutes, I get up and am OK. So I add this to my coping arsenal.

The fatigue set in right at the halfway point, just like my support websites said it would. So since day 1 I have been using emu oil. I reasearched it and not only is it a moisterizer, it is an anti inflammatory as well. Rads swells the breast as well as burns it so this is working for me so far.

Monday is the 4th of July holiday so I got a three day weekend. Only 9 more to go.

Wed is xray day and Friday I see the rad onc, back from vacation. Meanwhile the boob looks fine. I am emuing 3-4 times a day. The nipple is tan with red dots (?). The rad onc says I need to put cortisone on the boob now and writes the Rx. I try it over the weekend 2/day and emu 2/day and it gets redder so on Sunday I switch back to all emu. Noticible difference. No more cortisone.

5 more to go. Still have the dry cough. Boob still tan with red dots and chest above boob itches. Emu gives great relief. Final xray Wed then final treatment Friday followed by the 'See ya don't wanna be ya' with the rad onc. Spoke too soon. He wants me back for one final visit in 3 weeks. Can't wait to kiss him goodbye (figuratively with a raised middle finger).

For a the techs' 'see ya don't wanna be ya' I sent an edible arrangement of fruit dipped in chocolate with a card that said:

'It's been real and I hope I never see any of you ever again.'

The ABC's of Zappage

The radiation planning session consisted of a CT scan that the rad onc reviews with a physicist who assists in determining the angle of the death beams.

So here I go again into an 18" diameter tube and immediately I start hyper-ventilating. Have to go to my happy place and CLOSE THE EYES QUICK! I tell myself at least there are no needles. After that is done, they tell me to come back the next day for my first treatment. Oh I forgot to tell you that I basically made the rad onc treat me with the Canadian protocol. He agreed (one battle I did win). A normal course of rads treatment is around 32 zaps. These are administered Monday-Friday for about 6-1/2 weeks. The Canadian protocol is 16 treatments. So I am starting on 6/17 and will be done on 7/9. YAY!!!!

So first zap: I have to take off top and bra and put on the backless gown, tech comes, I give my name and date of birth then they take me in the room. The room has a 2 foot thick door with a sign that says 'DEADLY RADIATION!'. Nice. The machine is rather unprepossessing. It is about 2 feet square and is on an arm that allows it to rotate. So they make me lie down and raise my arms over my head and grab on to these hand grips. They draw dots and x's on me with magic markers then zap me. It is about two minutes per side. It starts out from my left side zapping across my left boob then it rotates down below the left boob and zaps up through the boob. First you can hear clicking sounds as the machine takes aim then sound changes while the zap happens. I pray during the aiming for God to protect my good cells then during the zap I chant "Die cancer die!". Worked for me.

They tell me they will tatoo the markings on me next week. I object but they assure me they are dots like a freckle. I guess that would be OK if I had black hair but I now have 5 black freckles to go along with my brown ones and blond hair.

I leave and head over to the Breast Center for the biopsy.

WARNING - NOT FOR THE SQUEAMISH
I arrive and all my friends come to say hi. They take me into the ultra sound room and the doctor explains that she has to get three different samples to be sure the pathologist has enough tissue to test. So first she injects me with xylocaine. In my neck below my jawbone joint and up through the jawbone flesh into the cheek itself (that's where the gland is). You know how when a dentists give you novocaine and it takes forever to get it all in? That is exactly what this was like. And we all know how much I LOVE needles. So after that is done, she takes the US machine in one hand and the biopsy needle in the other and starts digging. Yes, I kid you not...digging. I can hear it but not feel it except for the pressure of her digging. She puts tissue on three slides then tells me I have to wait there until the pathologist gives her the OK that he has enough to test so I can't leave because she might have to take more.

I'm laying there sort of zoning then she comes back in and say "BENIGN!" YAY!. All my friends are high-fiving me. All I want to do is sleep. The stress has been killing me.

Now What????

So on June 2, 2010 I go to the Gilmore Clinic to do auricular stimulation for quitting smoking. Amazingly, it worked. I walked out of there with no nicotine addiction. Still have the situational cravings but no "I'm going to kill someone if I don't have a cigarette." cravings.

I get to the easy-on-the-eyes radio onc on the 7th and tell him my concerns about radiating my armpit. I truly believe (from the path report) that the slide of the supposedly cancerous node was contaminated. That is a whole 'nother story I won't bore everyone with. He laughs at me. (Arrogant, patronizing little sh*t). He said I could not find any radio onc in the entire area who would treat me without zapping the armpit. I didn't bother to tell him I already had because I was too busy trying not to punch his lights out. So I make an appointment for the following week for my planning session. (I really was tempted to change docs but the guy really is good so I just bit my tongue).

Off I go to the ENT so he can read the PET. He looks at it and says there are two growths on my parotid gland. These are salivary glands located where the jawbone meets the cheek. He wants me to get a biopsy. YIKES! More NEEDLES!

I call my nurse navigator and she says to come to the Breast Center and they'll do it there. So that's scheduled for the 17th.

Surgery #2 - or Watch Barbara Pitch a Fit

Show up at the place at 6 and the first thing I do is ask what time my surgery is scheduled for. They say 1:30. I start yelling and threw my pen down on the floor, along with my newspaper, and yelled that I had to lay around and wait 10 days ago for 6-1/2 hours and by God I wasn't going to do it again. I told them I would come back at 10. They got the head nurse to get me out of there because I was scaring everyone and she assured me that she would speak to the doctor to see if they could get me in earlier. I am still IRATE.


I show the nurse my 5 inch long bruise from the last time and ask her if they can do better than that this time. She has this excellent nurse do it and I didn't feel anything except a little sting when she gave me a little local before she put the big needle in (they use a HUGE one in the OR that's about as big around as pencil lead).


At 8 they come to take me to the Breast Center for the needle loc (see previous post). They crunch me in the mammo and the radiologist said there are no micro calcifications so no needle loc. YAY!!!!! And a big double YAY because no needle in the nipple!! So I'm back in my gurney at 9 waiting. I told them NO ATAVAN so I am aware as I wait. Since my last surgery, however, they installed TV's in the pre op rooms so Marty and I watched Supernatural. Then the doc came in and told me he would get me in earlier. He said after he finished this one I was next. Well, that one took him about 1-1/2 hours but at least I didn't have to wait 6-1/2 hours. So they get me on the table and it is FREEZING in there. They give me a blanket and that's all she wrote until I woke up in the recovery room shivering so hard it woke me up. Perfect timing as the nurse was just covering me with two warm blankets.



They brought Marty in and we hung around for another 30-45 minutes so they were sure I was OK. I felt fine except the booby was a lot sorer that last time. I asked for some ice and that helped. We took off and got home around 3. I felt fine, other than the sore boob. I continued to put ice on it and finally, around 6 I was forced to concede that 2 surgeries in 10 days was more than I had bargained for and took and extra strength Tylenol.



I took 2 of those each day for two days then I was back to normal.

After surgery, the oncologist had ordered a PET scan for me on the following Monday AM. If you have never had one, listen up, and you will try to do whatever you can to get out of doing one. This is another test with a NEEDLE. First thing they do is email me instructions on what I can't eat or drink for the 24 hours preceding the test.

No carbohydrates
No sugar
No caffeine
No Nicotine

So what the hell am I supposed to eat or drink? But dig this: Marty's band is at Jimmy B's Sunday from 2-7:30. Can anyone even remotely conceive of being at Jimmy B's all afternoon and NOT having a beer? It's un-American!! Well, I did it, grudgingly. Had my last cigarette around 3. That was the best I could do.

Get to the place. They put me in this recliner and I am pretty much prone. They start the IV of glucose (she was not too bad) then they stick this radioactive stuff in you. Then they tell you to lay there for 50 (FIFTY) minutes and don't move, read, think. Oh man, this is pure torture for me.

They had one sign on the wall that said something about how the tech could not stay close to you after you get injected so don't take it personally. I read and re-read it then I started doing anagrams with the letters. I was basically going beserk. Finally she came and got me and took me into the bathroom, telling me to pee it out of me. Signs in the john said to stay away from pregnant women and little kids for 12 hours. Nice, huh?

So now I'm on my back and the tube is a LOT smaller than the MRI tube. Having panic attacks so I try to go to my happy place. This test is blessedly quiet but it, too, is an all-or-nothing test. Meaning, if I move we start over. It consisted of tests lasting 3,4,6,8,7,11,9,etc, minutes between which I could move. She would tell me how long then I would try to count backwards to give myself something to do and so I would know how much longer. Oh this was pure, unadulterated torture. This test lasted about 45 minutes. After they give you OJ or apple juice and a graham cracker, I grabbed the juice and got the hell out of Dodge. Thank God that was over with.

So I stop in at the Breast Center to see if my path is back and it is: not one cancer cell anywhere. So he got it all the first time. YAY!! Now we wait to see if I have to do chemo.

Have an appointment with the onc in three days, on Thursday and the test should be in by then. I go in and he tells me the score is 17. Low is 0-19, intermediate is 20-33 and above that means chemo for sure. So he tells me that my risk of recurrance rate is 14%. If I do chemo, it goes down 3%, if I do a hormone drug it goes down 4%. So hating drugs as much as I do, I figure I can do this with diet and supplements. He rolls his eyes at me. I tell him I will consider the hormone drug but chemo is out. So he tells me that a couple of spots on my jaw lit up on the PET scan and he wants me to see an ENT. Just what I need, another lousy body part failing me. Make that appointment for 6/7.

Next up - radiation. That appointment is on the 7th as well.

Post Surgery Blues

So, they said the pathology would take about a week and after that, they said I would most likely not need chemo and could start the radiation shortly thereafter. Path came in on Friday (5/14) and one node of the 4 (that tested negative in the OR) came in with what they call micrometastases. Plus, they did not have what they call clean margins around the tumor. So now everything is looking REAL different. Saw the radio onc on Monday. He said because of the node, I couldn't do Mammosite. For those who don't know what this is, it is a 5 day twice a day radiation treatment where they insert a balloon-type thing into the excision area then drop a seed of radioactive stuff in twice a day, taking it out after each 10 minute treatment.

He also said I would most likely need chemo. Bummer. So home I went, awaiting the appointment with the surgeon on Tuesday.

The surgeon said I could 1. Do a mastectomy 2. do a double mastectomy 3. Do another excision (called a re-excision).

I picked re-excision for the same reasons as before. The boob felt fine. I didn't even need any pain pills or even a Tylenol after the surgery. He felt comfortable that we could get clean margins and I felt comfrortable that another surgery was no big deal. He said he would put the chemo port in during the surgery saving me an out-patient surgery for that. He also said that the pathology was not real clear and that they were having a tumor board meeting the next day to discuss my case. The tumor board consists of my three doctors plus the head pathologist. He said he would call me if there was any change from the plan. Anyway, we went to schedule it. His first opening was Thursday, 2 days from then, so I went for it. Just wanted to get it over with.

The next morning the surgeon called. He had GREAT news!! They were pretty sure I wouldn't need chemo so no port on Thursday. The onc ordered a genomic test called the OncoType Dx test which looks at cancer at the genetic level and comes up with a recurrance score. The test takes two weeks so I won't know anything for sure for two weeks.

So surgery the next morning.

Surgery - DISCLAIMER - not for the squeamish

Oh boy here we go! Told to be there at 6AM. Yuck. Marty and I go to bed at 8 PM. Right. Anyway, up we get. No coffee for me. Off we go. Check in. They take me back to pre op and make me put the gown on. Nurse comes in to do the intake. Then puts the IV in my arm. OMFG! It hurt like a MF (and I do not mean mondo fajita). In the FYI category, the bruise on the arm lasted for THREE weeks.

Next, they tell me I am off to Radiology for the needle locator (commonly referred to in hospital slang as the needle loc). Back down to the Breast Center. At least they are all my friends by now. They mammo me and with boob clamped, the doc (after xylocaine) inserts a wire into the tumor. Unclamp the boob then I have this wire sticking out my left boob at about 2 o'clock. They place a styrofoam cup over it so now my arm is sticking out kind of like a weight lifter with lots of muscles who can't get his arms to lie straight down. Nice.

Then I sit in the hall way for a while and they take me to nuclear medicine.
NOTE: This is where the squeamish need to stop reading.
I get there and the tech says the radio-isotopes have not arrived yet. So I sit in the waiting room for 15 minutes. They arrive and the tech puts me on a table that is part of a gamma camera. I'm laying there and he gives me ice and tells me to ice my nipple down. I am like, "Are you nuts? I need xylocaine!" He said that they can't give anesthetic because it impairs the movement of the isotope. Then he gets this spray can of numbing stuff and sprays me several times. The the doc comes and does the first of four injections into my nipple. I shriek "F#%$ Me! F*&^ Me! F%*& Me" about 10 times because not only does the needle hurt like a B*&$ch but after it starts going in, my breast felt like it was entirely on fire. I mean it felt like someone had poured boiling oil on my boob.

Then the doc says "All Done." I didn't even feel numbers 2-4 as my poor boob just shut down and gave up the ghost. Have to admit it was kinda cool watching the isotope moving around with the gamma camera. They had a little monitor so I could see it. Back to Pre Op.

Arrive back at 10:00AM. Hanging around waiting. And waiting. And waiting. I overheard that my surgery wasn't scheduled until 1:30. I WENT BALLISTIC!!!! I paced up and down the hallway saying "3-1/2 hours of sitting here waiting with a freakin needle sticking out of me? Are they crazy or just sadists?" This was followed by (a lot of) muttered obscenities.

The nurse came back and told me to get on the gurney. She shot me up with Atavan and it was lights out until the next moring when I woke up in my bed.

Surgery went well. Doc told Marty no node involvement (he took 4).

I was a real PITA for Marty to deal with what with the Atavan in me and that stuff makes me nuts anyway. After we got home I was sitting in one chair and would pass out then I would move to another and pass out and I must have this for over an hour until he dragged me upstairs. That was when I decided I had to have a bath. I have a saint for a husband who allowed me to get in the bathtub around 8 that night and made sure I didn't knock myself out or drown (I remember nothing).When I woke up the next morning and kissed him and said good morning he said, "Thank God you're back."

I love my husband sooooo much!