New Communication

Alright - so I had a talk with the doctor about the way my appointments have been going. It was pretty tearful. Dr. Sherman is great.

I am very happy with my oncologist and wouldn't trade for anything.

Mammogram Results

I got a letter from the hospital the other day. They say they cannot give me the results of the test until they have comparison films from my prior mammogram, and also from my PET Scan. Apparently there are a couple of areas of concern that they need to review.

Cancer Knocks You Down

These are some of the ways Cancer breaks you down:

1. You are diagnosed with cancer. It feels like you've got a dog's choke collar on and you just peed on the carpet. Only, you haven't. Cancer just peed on you.
2. The surgery. Think about it: you are having surgery to remove one of the things that make you a woman. Oh yes, let's not forget the discussion you get before surgery ...you know the one about the advanced directive? And the form you have to fill out "just in case"? Nice.
3. The appointments. The waiting rooms, the forms, the endless scans, tests, exams, IV's, tech's searching for veins, bruises from their unsuccessful efforts. Basically you are poked and prodded over and over again. It leaves you wanting to hire that one person who could actually find the vein to come with you to every appointment that involves a needle.
4. The effect it has on your career. Cancer treatment must be aggressive. And it takes a long time. Cancer doesn't care how long you've been on the job or what your project plan is. It doesn't care if you have health insurance.
5. The chemotherapy weakens you physically. Chemo is made to kill cells. If you were active before diagnosis, you are stopped. If you were sedentary, forget it. You may have been able to do anything you wanted to. Cancer has a different idea about you now. And you will be brought to your knees. Literally.
6. The chemotherapy makes you bald. You are a woman, but you look like a _____ (who knows what?) People don't know what is going on with you, and they don't ask. I wish they would ask.
7. The hormone therapy. The chemotherapy will usually take a woman like me - premenopausal - and make her postmenopausal. I will never ovulate again. Imagine, you are a 39 year old estrogen-rich young woman in February, and then in November you are like a 55 year old woman. Oh yes, since my tumor is hormone receptor positive, it means that I will never be able to use hormone replacement therapy. Just another way Cancer takes away your womanhood.

There is no deciding how you proceed after your diagnosis. You attack back. You must. It's not easy. And Cancer has experience at it's job. It's good at it. So we fight. We fight the anxiety, we fight the depression, we fight the urge to vomit, we fight the urge to flee to someplace with a beach and no hospitals. It feels like we probably won't die in treatment, but we could come pretty close to losing control of our faculties and in doing so, lose our dignity. We wear those damn gowns open in the back.

But I can tell you that I am glad to endure all of it. Because as hard as Cancer tries to strip me of everything I was, I know there is more to me than my body. If there is cancer in my body, take it...take it any way you must to rid me of it...it wasn't mine and it didn't belong here. I am glad to be rid of it.

"What does not destroy me, makes me stronger."

-- Friedrich Nietzsche

"Endure and persist; this pain will turn to good by and by."

--Ovid

Emotional Doctor Appointment

I was pretty emotional on the day of my last doctor apointment. Here's why:

My dad passed away 10 years ago at the end of October. My mom died in December 2000. Their birthdays were in September and October, respectively. Plus, it's the holiday season. Joy to the freakin' world, man. Kidding aside, there are times when I get down and can still feel that empty feeling of loss. This day was one of those days.

Dr. Sherman explained that I might also be emotional because of the phase of cancer treatment I am in. I am in the maintenance phase. He explained that the initial attack on the cancer is over - we've done all we can for now. Now it is like waiting for the other shoe to drop. We wait and see what will happen - ever on alert, but not actively killing cancer. We wait until it presents in some symptom. I still need to attend to the side affects of cancer, like my numb leg and my blood clot (both of which I very well may have for several years). I must take my hormone therapy drug every night. And for the rest of my life I will have to get Zometa infusions. Dr. Sherman says this is the hardest part - the waiting. Yes, it has crossed my mind. What a great addition to my holiday emotional buffet of Joy!

Another Zometa Infusion

I had another Zometa infusion recently. I am getting Zometa because the breast cancer has spread to my bones.

It is always nice to visit the nurses at the doctor's office. When I got there the place was packed! (not really good to see so many people with cancer...) The room was so full: it had only one chair left. Good thing about that was that it was easy to choose a chair. Heeheee!

There was a time not long ago when most everyone who approached me asked me to remove my top so I could have a breast exam and then they touched my breast. Times have changed. Oh, they still come wanting to touch me, but now...they want to feel my new hair. I prefer this.

One of the nurses that used to set my IV up is now retired...her name is Mary. I miss Mary. But thank goodness, I still have Gwen! She is the sweetest thing. Gwen caught me with a puzzled look on my face and we talked a little bit about what was puzzling me. Then she brought my file over and explained things. She made sure I was satisfied and okay with the answers and made copies for me. Gwen is wonderful. She does the nursing, and she interacts with the patients in a very kind and caring way. She is never too busy for the patients.

I have only one complaint about the Infusion Room: the candy dish is out of Snickers Minis.

Blood

I went to see my buddies (Marevil and Alice) over at Quest Diagnostics for a blood-letting. Just kidding, it was for "big labs". It is always so nice to see the two of them. Marevil and I have been comparing Filipino mannerisms for the last few appointments. (She and I have Filipino blood) She is funny. I have a lot of fun when I am there. I look forward to going to the lab.

Speaking of blood, I got a call from the doctor's office: it was Kathleen, the Nurse Practicioner. Kathleen monitors my coagulation time (my PRO-TIME). We had to increase my daily dose of Coumadin because based on my last lab work, my blood was clotting in 19 seconds, which is too fast to be therapeutic in dissolving my DVT (Deep Vein Thrombosis -aka blood clot).

One more thing on the subject of blood: there is a mobile blood drive bus parked on one of the very well traveled roads here in my city. I get a twinge of sadness every time I see that bus. I used to give blood whenever there was a blood drive at work. Because of cancer, I can never donate blood again. This is only one of the changes to my life because of cancer.

Chiropractor AND Physical Therapist, too!

I have been seeing another man. Two of them, actually. One of them is my chiropractor and the other is my physical therapist. I have been seeing them three times per week in the hopes that eventually the numbness in my left leg (one of my side affects of the cancer treatment) gets resolved. Nothing yet. I have been noticing muscle spasms in that leg and sometimes I feel some other kind of activity in there -I am guessing that it might be some electrical impulses. I have learned how to walk on that leg pretty well now.

Regarding Mammograms

1) My first mammogram (a few years ago):

(Screening mammogram) You park the car, you go in, you check in with the receptionist, you fill out one or two forms. After just a short wait, one of the technicians calls in and out of the reception area, you change out of your top and into a gown in a small private stall, and then you are brought into a room where your breasts will be imaged by the xray machine. I was quite a bit uncomfortable with someone touching my breasts. The nice technician lines you up at the machine and places your breast on the glass. Under the technician's control, the machine brings down another sheet of glass until your breast is as squished as it can get. If the tech doesn't get a good image (breast too large to fit on the film cartridge, patient moved while the image was being captured, etc.) , the process is repeated. This is done for both breasts. Then you're done. You put your own top back on, and you will get a call from your doctor the next day with the results. Results are "negative" (for anything suspicious).

I remember the ladies I worked with at that time telling me how they hated getting a mammogram because it hurt so much. They said that their breast was squeezed soooo hard that it hurt very much. I didn't think it hurt at all, though. Yes, the procedure was the same for all of us, but it didn't hurt me like they had warned me it would. As a matter of fact, I used to joke about it to them. I'd say, "I always did like my breasts squeezed..." They would laugh.

2) My second mammogram (in February 2005):

(Screening mammogram -that's what they call them when they are certain there is a lump) Procedure might be the same as the first experience, but it didn't seem like it. It may have been due to the circumstances surrounding my exam. Hello! The differences in this experience from the first - a.) the receptionist must have given me about 12 pages to read and sign/complete. (thanks to the new laws regarding patient privacy, I guess) b.) waiting for one of the technicians to rescue me from the waiting room felt like forever. c.) I still felt a little uncomfortable with the technician touching my breasts but you just have to get it done, right? d.) ultrasound is included for a diagnostic mammogram, and I had never had an ultrasound of my breast before. e.) different results this time. (Suspicious for Invasive Breast Cancer or "Invasive Ductal Carcinoma") And, I didn't have to wait a day for the results - I got a phone call from my doctor 30 minutes after the exam asking me to come to see her at her office as soon as I could.

This time around, I was afraid the mammogram would hurt because of the lump, but it did not. The ultrasound, however, hurt like crazy.

3) My third mammogram (last week):

(Diagnostic follow-up based on PET Scan concern) I am now an expert at completing medical forms. Nothing much bothered me about the waiting room - I have learned not to sweat the small stuff. I am no longer shy about having medical personnel touch my breasts. As a matter of fact, I have to be careful because now it is a natural reflex for me to remove my top and bra when I go to a medical building, even though one of my visits was to a dermatologist...and I was there for my foot. If I had a dollar for every time someone in scrubs or a lab coat touched my breasts this year, I'd be a rich woman. Still waiting for the results of this exam.

I was in so much pain for this mammogram. I mean, YOWEE! Oh my goodness, it did hurt. It didn't hurt much at all on my right breast, but the left breast imaging was excruciating, and it was because of the scar tissue in that breast. The technician told me that I could count on it to hurt that much every time from now on in that breast. Doesn't that just suck?

Before my diagnosis - in 2004:

I never looked forward to routine check-ups in the doctor's office. I knew about monthly self-exams, but I didn't check my breasts. I kind of avoided checking them. I kind of avoided the doctors' office, too. I was not yet 40 years old so I wasn't on schedule for yearly mammograms yet. Yes, I knew a little about breast cancer - we are all inundated with pink ribbon stuff every October during Breast Cancer Awareness Month, aren't we? We raise money for breast cancer reseach in the hopes of finding a cure - we see pictures of smiling bald women who are "beating cancer" - they are "survivors". We hear stories of advancements in medicine and unbelieveable survival rates for people with breast cancer.

Now after I have completed treatment for breast cancer - November 2005:

Now, I look forward to my doctor appointments. And now I check my breasts REGULARLY. I was nervous about getting screening mammograms once a year, and now I will have to have a mammogram every six months. I really know about breast cancer now. And now, even when it is not October, I see the face of breast cancer. I see it every time I visit the chemotherapy infusion center, I see it at breast cancer support group, and I see it everyday in the mirror.

If I had known in 2004 what I know now, you wouldn't be reading this blog.

Mammograms can be uncomfortable to say the least. But you have to get them - you just have to. Once a year, that's it! Do it.

Giving yourself a monthly breast self-exam may make you nervous the first time. But keep it up, and you'll get to know your body.

If you need any further motivation to get your mammogram and to perform your self-exams, try picturing yourself with no hair on your head.

a-HA! Information on Hair Phases!

Hair on the scalp grows about .3-.4 mm/day or about 6 inches per year. Unlike other mammals, hair growth and loss is random and not seasonal or cyclic. At any given time, a random number of hairs will be in various stages of growth and shedding. There are three stages of hair growth: catagen, telogen, and anagen.

Catagen - The catagen phase is a transitional stage and 3% of all hairs are in this phase at any time. This phase lasts for about 2-3 weeks. During this time growth stops and the outer root sheath shrinks and attaches to the root of the hair. This is the formation of what is known as a club hair.

Telogen - Telogen is the resting phase and accounts for 10-15% of all hairs. This phase lasts for about 100 days for hairs on the scalp and much longer for hairs on the eyebrow, eyelash, arm and leg. During this phase the hair follicle is completely at rest and the club hair is completely formed. Pulling out a hair in this phase will reveal a solid, hard, dry, white material at the root. About 25-100 telogen hairs are shed normally each day.

Anagen - Anagen is the active phase of the hair. The cells in the root of the hair are dividing rapidly. A new hair is formed and pushes the club hair up the follicle and eventually out. During this phase the hair grows about 1 cm every 28 days. Scalp hair stays in this active phase of growth for 2-6 years. Some people have difficulty growing their hair beyond a certain length because they have a short active phase of growth. On the other hand, people with very long hair have a long active phase of growth. The hair on the arms, legs, eyelashes, and eyebrows have a very short active growth phase of about 30-45 days explaining why they are so much shorter than scalp hair.

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I will tell you that just last night I was telling Mark that I would be happy if my hair never grew longer than it is today. It would be fine with me. If it grows, it grows. If it doesn't, it doesn't! I am not sure I would like it any longer, actually. I am enjoying how little time it takes to get ready to go somewhere. And I like the feel of it. We'll see. :-)

Crackling

I keep forgetting to write about the fact that when I breathe, I hear crackling in my chest. I have told Dr. Sherman about it and he dismisses it in many ways. He listens to my chest with the stethoscope and says he hears nothing, he checks my neck and feels nothing, he checks my ears and throat and says he see nothing, and then tells me I may have caught a virus or something. But I have been coughing (dry coughs) for the last two months and I can hear myself rale when I breathe. What gives?

Hair

A few posts ago, I posted a picture of my head, so I could show off my hair. Well, I have been telling Mark that I think it (my hair) has stopped growing. I mean, come ON...it is taking soooo long to grow any longer than it already has. Mark says it is in "the thickening phase". I think he is joshin' me. You know what else? I haven't had to tweeze my eyebrows in a couple of months. Also, my underarm hair has not been growing like it used to, either. Harumphf! I wonder why...

Maybe it's because of the new drug I am taking: Arimidex.

???

Pet Scan Report

The doctor called me last week. He said "The PET scan is clear!", and that was it. I said, "Okay." and we hung up. Well great! After a couple of days, however, I realized how short that conversation was. I have a copy of a previous PET scan, and it has a lot of information in it. So, I called the doctor's office and requested a copy of the report. It says, "No definite evidence of disease." Alright!

However, it does mention several things:

It mentions some hypermetabolism in the right A/C joint due to degenerative activity in there (I have no idea about this). It also mentions residual hypermetabolism in my lumbarsacro spine (I have no idea about this either). It also mentioned some hypermetabolic activity in my lumpectomy scar in my left breast. I have noticed that my left breast feels a little sore sometimes, but I don't know why. The radiaolgist who wrote this PET report suggested followup to this area soon. Well, lucky for me, last time I saw Dr. Sherman I asked him, "How will I know the difference between my scar tissue and a lump?" and Dr. Sherman wrote up an order for a mammogram. He appeared to have forgotten to set me up for routine screening mammograms. Kind of like how he seemed to forget (until we asked) to tell us about tumor markers, and how he forgot to write me a prescription for Coumadin when I got the port put into my arm....he forgot until I came in with a clot. Things like this don't instill a confidence in us. And they seem to happen too often. Heck, forgetting to tell me about something in my treatment once is too often for me thank you. The report also showed some symmetric hypermetabolic activity in my tonsillar areas which, the radiologist says, is most likely physiologic. This explains the swollen glands in my jaw from last week and the earache I just got over.

This is why I love the report! It shows me how my body works. If I had not read the report myself, I would have wondered about the earache...and I would have probably called the doctor to make an appointment.

Anyway, my appointment for my diagnostic mammogram is coming soon, and thank goodness. I have read that many times, recurrence occurs in the scar area, and my scar area has been a little sore. While the PET scan shows "no definite mass" in the area, it definitely shows activity in the area. The radiologist thinks it is important to follow up on, and so do we (Mark and I).

Oh yeah, one other thing on the PET scan report is that the seroma in my left armpit is getting smaller (it is now 2.7 cm). It's about time that sucker is shrinking! My surgery was on February 28th, for goodness' sake!

The report could be better..it could have said, "No evidence of disease" instead of what it actually did say ("No definite evidence of disease") But then it could have been many, many times worse.

Radiation Burn

Mark pointed out a radiation burn that I not seen before. it is on my back, and appears to be where the radiation exited my body. Cool!

Halloween

We had a nice Halloween, thanks to my sister Erin helping me with the decorations. They were fantastic! I went and picked up a pumpkin on Halloween Day. I carved it myself, with a very large knife. I was careful not to stab myself, lest I bleed to death due to the anticoagulant I am taking. My sister took a picture of the pumpkin with the candle inside, I will have her email it to me so I can post it here. We had only a handful of Trick-Or-Treaters in my neighborhood, but my niece and nephews enjoyed the decorations, so it was worth it. I went out to ride along with my sister and her kids a few blocks over, but I got tired after just a short trip out. Earlier in the afternoon, my sister, Erin, and I drove over to the Radiation oncology department at the hospital. I was wearing my Sumo Wrestler inflatable costume and my white mask. I was trying to be scary but everyone just laughed! That's cool. I think my job on earth has been to make people laugh. I think I am pretty good at it, but I am sure I am not as good at it as I think I am. I just sent an email asking Kristen (from the Radiation Oncology dept) to send me the pictures they took. We then went over to my other sister's place of business, but the visit was short, as I was getting short of breath and felt like I was going to faint. My body felt cool, but my head was pretty warm from the "hair" that came with the costume, and the mask.Can you see me there, in the Sumo Wrestler suit? I am holding open the door...

Another PET Scan Today

I just got back from another PET Scan. I asked for a copy of the scan and they gave me a disk! Awesome! Luckily, the disk came with a viewer so I could read the images on my pc... Lot of good that does me, though. I have no idea what the results of my scan were. LOL. The report is the thing I need. Although, it is quite fun to go through the images real quick...it's like what you see on Discovery Channel...slices of my body...one slice at a time....very cool.

My Hair Is Growing

Zometa Infusion

I had my Zometa infusion on Monday morning. That wipes me out for a couple of days. I get a fever and the sweats...not pretty. I wasn't sure about why I was switched from Aredia to Zometa, and I asked Dr. Sherman about it. He said, basically, it's too expensive. I guess too expensive for him because I don't pay anything for it. What has me worried is that I met an older gentleman in the infusion room who had been on Zometa, but it badly affected his liver so he was switched to Aredia. Now I have been switched from Aredia to Zometa! But Gwen, one of the infusion nurses told me that it is the patients' Creatinin levels that they watch...to see if the liver function is good...an, in fact, my Creatinin level has dropped by a point (which is good). So it appears that I am still safe with Zometa. Plus it takes less time to infuse than the Aredia. The elder gentleman told me he was switched to Aredia after the second infusion of Zometa. This was my second infusion of Zometa...so we'l see. He said he didn't feel any change in his body when his liver function went bad...so it is just the big labs (blood work) that tell if the Creatinin is going out of whack. Come on liver!

Uneventful Event

I went to the doctor's office yesterday (medical oncologist). He gave me a flu shot, a shot of Lupron (which shuts down my ovaries and keeps me post-menopausal), and a prescription for Arimidex (hormone therapy for my cancer).

Houston 2, LA Angels 0, Top of 6 (Game 2 NLCS)

Well I got the confusion about blood tests figured out. I just go every two weeks to get BIG LABS, and now that I have my PRO-TIME at the right TIME (2.3) I only need to check that every month. Another thing that helped was having the doctor's office rewrite the standing order for BIG LABS to include cc:'s to me and the radiation oncologist. The original goes to my medical oncologist.

I have recently discovered a newsgroup for breast cancer folks like me (with metastatic cancer), thanks to a link from a link from a link I found on someone else's blog. I can't even trace it back to the original blog! Shame on me. Anyway, the url is bcmets.org. I love this site! Sooo much information for me, written by people with Stage IV cancer like myself.

My white blood cells are still low, and I am told to expect that for some time to come.

I went for a walk tonight with Mark. Didn't go far, but we went and that is what's important.

I have been having dry coughs at night, and when I am not, I have really heavy and thick chest congestion. Don't know why...

I am taking new drugs for my numb leg: Neurontin and Lyrica. Both are anti-seizure drugs that are also used in patients with neuropathy. It'd be nice to have a drug primarily for the neuropathy and maybe secondarily for seizures...SINCE I DON'T HAVE SEIZURES! What do I know? The spine surgeon who is prescribing the Lyrica [new drug on the market, btw...he prescribed it after i started crying in his office when he told me "It may or may not work (at getting rid of the numbness in my leg), it will do what it wants..."] said that a cortisone shot in my back and leg is usually indicated in cases such as mine, but since I am blood thinner (Coumadin) he won't give it to me. WAAAA! I feel like such a prisoner! Pisses me off, frankly. Oh well, God wouldn't close doors without leaving one open...so picture going around the *house* banging on walls trying to find the darn window!

Cheers!

For the past several months I have been trying to fit my cancer into the three months allowed to employees in the United States in the Family Medical Leave Act. I have now realized that this cannot be done. I have worried about this since February. Thanks to a wonderful lady at my office (she was interim Director of Pharmacy-M.I.S.), I am being afforded time to recover from the effects of all of the treatment I have received since February. This woman is truly an angel. This has been a long tough road...and the thing of it is, it is not over. I have been pretty hard on myself, too. I have expected to be "myself" again shortly after radiation therapy was complete. I'm not the same old me, and frankly, I won't be for some time. I have been depressed about it. It is like I have refused to give myself the time to heal. The truth is that I have been worried about work. You see, even though I completed "treatment" for breast cancer, I am not yet ready to get back to work. Okay, the FMLA is great for pregnancies, maybe or other non-chronic medical issues. But my situation might be a little different than those. I have stage 4 cancer. Don't get me wrong, I do not plan on giving up on myself....I just know now that I need to give myself time to heal. Thankfully, I am being afforded the opportunity to do just that. Work has approved my working from home until I am better. I am blessed with wonderful, understanding people in my life. I am anxious to contribute to my department, although the logistics of getting that underway are not straightened out yet, but I am assured they will be. The wonderful lady of whom I speak is Paula D. Thank you, Paula, for your concern for me. And thank you also for the opportunity to contibute from home while I recuperate from treatment.

I Swam A Mile

I checked my blood count on Friday afternoon...and I was okay to swim on Saturday! Whew! It was so hard to swim after not swimming for a couple of weeks. The first week of swimming I missed was due to the infected open skin from radiation, and I missed another week of swimming because of low white blood cells. I am happy to report that I made it! I swam the entire mile! It was a great day at Mills College. The weather was hot on Saturday: very hot when the sun was out, and tolerable when the clouds obscured it. But being in the water was good...not too hot, not too cool. Mark and I picked up my sister, Erin, and drove out to Oakland. My sister, Arlene (she also swam a mile), brought her husband and three of her children. Arlene and I were able to swim in a lane to ourselves. I have got to tell you, Arlene is a great swimmer. She has such stamina!

Anyway, when we got there we found the parking lot was a long way from the pool, so Mark dropped off Erin and me up by the pool and went to park the car himself. Arlene and her family got a late start out on the road so they got to Mills College a little bit later than we did..but only by a few minutes. We got in line and checked in with the registration desk where we were handed our tshirt coupon (every swimmer got a free tshirt) and we were pointed to Desk #1.

At Desk #1 we filled out our personal information card. On this card we put our name and who we were swimming in honor of and/or in memory of. We could also indicate if this was our first Swim A Mile.

At Desk #2 we were sorted by speed. I was sorted as a medium speed swimmer and my sister Arlene was sorted as a fast swimmer. She got a card that had a shark on it and my card had some other kind of fish. These cards help the staff with lane assignments.

At Desk #3 we were given our Swim A Mile goodie bags. They are nice! Inside were a few goodies: a local publication, some flyers for WCRC activities, and a Luna Bar! I had never had a Luna Bar and I enjoyed it very much. At Desk #4 we were directed to the locker rooms to change. Arlene and I are veteran swimmers and arrived in our swimming suits and towels so all we need was a place to drop our clothes. We chose a spot on the opposite side of the pool where no one was. It wasn't that way for long, though. Soon after we put our things on that side of the pool, it filled up fast. It was just too small in the locker rooms and way too crowded and humid. Plus, I am uncomfortable with too many naked female bodies at once. My sisters are the same way. Anyway...

At Desk #5 there were several Sharpies and spcial cards and an Honor/Memory Wall. We could use the pens and paper to indicate whom we were dedicating our swim to. I swam in memory of my mother, Angie Cronan, and my paternal gradmother, Ruth Viola Truesdell Cronan Dunton.

And finally, Desk #6 is where we swimmers would wait for our lane assignments. We were escorted to our lanes from this point.

So, we swam. And we swam. And we swam a mile.

We had our very own lap counters: Erin and Mark. We had lots of support in Arlene's kids and Duke. Laneia, Arlene's youngest, was very busy with the camcorder, and The Cybershots were going crazy. I don't have a picture to post yet (I am waiting on Arlene to send me some). Arlene is good. She swam her mile in about 34 minutes. I finished in about 40 minutes.

It was a great event. Lots of volunteers. Very well organized. There was a big food area. They served sandwiches, fruit, salads, ice cream sandwiches, chips, water, juice...it was a regular smorgasbord. Our registration entitled us to a raffle ticket, but we didn't win anything. But that's okay! We did it for cancer research...and the giving is the greatest gift we got. Ok, that and the cool bags.

Doctor Sree

I went to see Dr. Sreenivasan recently. She had mentioned that if I was concerned about losing weight she might be able to help me. So I went to see her. Can you believe she said, "Don't worry about your weight, Sweetie. You're beautiful!" OMG. I am so not fine. I don't feel fine. I don't care how I look at this point. I feel horrible. I am also concerned about diabetes. My mom was diabetic and I don't want to become diabetic as well. Dr. Sree assured me that I am not in danger of becoming diabetic at this time. She said no problem at all.

What she was concerned about, however was my low white blood cell count. She told me I am at great risk of infection, so I stayed home from work for the last few days of the week. The first couple of days this week I was exhausted and had a fever. I think it was because of the Zometa. I hope to be back at work on Monday.

Liver Function

I got a call from my dermatologist's office today. She (the dermatologist) as going to prescribe me Lamisil for a fungal infection I have developed, but when she got my blood test results, found that my liver function was off. So, I can't use Lamisil. Great. She even offered to fax my results to my primary physician and my oncologist because she is concerned about my liver. Wonderful. If it ain't one thing, it's another.

New Drug - Zometa

I went to the doctor's (medical oncologist's) office yesterday. I got a new drug in my IV. It's not Aredia anymore. Now it's Zometa. I felt feverish yesterday and really exhausted. On top of that I feel like I am getting an earache. I hope I can still participate in the Swim A Mile For Women With Cancer on Saturday.

I am worried about my Norco prescription. I only have six tablets left. I don't use it all the time (I take it for pain in my back and leg). In fact I only take it maybe four nights a week and only at night. The Norco was prescribed initially by my surgical oncologist, but then it was refilled by the nurse practicioner at my medical oncologists office because I was in chemotherapy when my sciatica and the numbness came back in my left leg. (what I had used before for my leg was Ibuprofen 800, but since I am blood thinner/anticoagulant: Coumadin, I can't use it) It doesn't seem right to ask my medcical oncologist to refill the prescription when I am seeing a new doctor for my back problems, so I am going to get an appointment for the back doctor. The problem is, my appointment is not for two weeks from now and I am afraid of the pain coming back once I have run out of pills.

A Walk In The Park

On Sunday, September 25, 2005, Mark and I went to a ballgame: Oakland v. Texas. It was a fantastic day. It was Breast Cancer Awareness Day at the park. Here is how I got invited... I was in Longs #94 one day picking up one of my many prescriptions and I met Teresa. Teresa is a breast cancer survivor. Teresa was checking as a cashier at the time and wore a few Oakland A's pink ribbon pins on her collar. Since I am a big A's fan who had just been diagnosed with breast cancer, I asked her about them. She told me the A's have a breast cancer day every year and she gave me a number for survivors to call to get an invitation. So, in July, because I am a survivor, I got my invite. Here is what the day included:

• two tickets (one for me and one for a companion - I took Mark, of course)
• bagels and cream cheese, juice, water or soda, jamba juice when we arrived to check in
• a goodie bag packed to the brim...I mean this thing was HEAVY with free stuff!
• a pink tshirt to wear on the field
• sandals
• a catered lunch - cafeteria style...yummy
• a luncheon with several guest speakers from the bay area....tv news anchors and popular radio hosts included as well as players' wives
• the promotion for the day; Bobby Kielty Troll Dolls!
• finally, we all got to walk on the field during a pre-game ceremony. The survivors marched on the field and moved into position to make a huge pink ribbon, while the supporters marched along the dirt track all around the field. my sister, Arlene and her husband Duke were there to show their support for me on that day, in addition to Mark, of course.

During the ceremony, white doves were released in remembrance of those who did not survive the deadly disease, and at the end of the Star Spangled Banner, all of the survivors released the pink ballons that we marched out with. It was a glorious sight.

After releasing the ballons, we marched back off the field and to our loved ones. Then it was time for baseball. The A's didn't win that night, but that's okay. I had a great day. I felt so important that day. Plus it was all free!

Both Mark and Arlene and Duke told the same story: as they were walking down to the field in between s survivors, they were applauded. However they were confused about getting applause. They figured WE, the survivors deserved the applause. I told her that we didn't choose to have cancer. Having cancer doesn't really require courage (in my opinion). She says, "We didn't do anything to deserve that clapping". Untrue. The survivors got free tickets to the game and all of the festivites. But the supports had to dig in to their own pockets to take part. Their tickets cost $25.00 each and included the walk in the park. The supporters are the ones that made this whole giving event a giving event. You see? God blesses us with those who give from the heart. They bless those of us with cancer, and those of us who will get cancer and don't yet know it.

I Miss Radiation Therapy

Yep. I miss all those silly people. No, I don't miss the radiation...just the folks. They said I can still come around and visit them in Radiation Oncology at the hospital, and if I feel like it, I can even put on the gown. Yeah. Right.

They are really such special people. They have become so much a part of my world over the last six and a half weeks (I guess they would, since I have had to go to the radiation oncology department every day of those six and a half weeks. Everyday except for weekends and the Labor Day holiday.....because we all know that cancer doesn't grow on weekends and holidays..lol).

I wanted to do something special for them on my last day of radiation, so I stopped at Jamba Juice on the way in and picked up about sixteen smoothies for everyone. I think they liked them. It was a fun "last day of radiation". They (the therapists and Kristen and Margaret [the boss]) hummed "Pomp And Circumstance" for me when they presented me with my certificate of completion...like a graduation diploma. The day before I picked up a bunch of cookies from Cookies By Design.

I was dreading my last day of radiation therapy. They really are an amazing bunch of people. So caring! And it turns out...SO FUN! I cried and cried on my last day. I came away with a few email addresses and telephone numbers, though...so I am good.

I pulled one other stunt on my last day of radiation therapy. I drew a happy face on my left breast. What the heck? They wrote on me everyday with their Sharpies! I thought I would surprise them with a little design of my own and hopefully get them to laugh, too. Mission accomplished. Heck, I was proud of my handiwork I was showing my boob to folks who weren't even therapists! Sherry took some digital pictures of my left breast with my drawn-on artwork. They said, "Put the pictures on the blog!". As if. I only agreed to let them take the picture so they could put it in my file. There it will be protected by HIPAA. God, I hope so. =:o

My last appointment on the Primus (that is the name of the machine that was administering the radiation) was not the last time I will go to radiation oncology. I have a three month check up in...you guessed it...three months. And then, after that, I will have a six month checkup and then annual check ups.

Open Skin

I haven't been feeling up to posting to this blog because of the open skin on my chest near my neck. The radiation made my skin so thin around my supraclavicular area and that, coupled with the chlorine in the water at the pool drying my skin caused my skin to break open and get weepy. I was given some FlexiGels to put on the area and it felt sooo good. I was also given Domeboro solution powder packs and they have really helped the skin grow back. I guess it also proteced the area from infection, too. It was pretty gross. It was getting all blistery. Yuck! Anyway, it is much better now, but I was home from work for the week because in order to use the Domeboro soak four to five times per day, I had to lie down and there is no place to do that (lyingdown) at work.

Saw Ralph Today

Yep. I puked. Yuck. That was this morning. I felt a little pukey after radiation this afternoon, as well.

Monday Monday

I went to work today despite shooting pains in my left underarm and left nipple areas. I tried to not let the shoulder harness of the seat belt irritate the broken skin on my radiated area on my neck. I tried to forget about the burnt skin on my left arm rubbing against the burnt skin on my left side while I was at work. And I tried to follow doctor's orders about not wearing a bra, but come on!

Other than that, everything went fine today, physical therapy included. My PT is Garrett. He is very nice. We are teaching me to not favor my left leg (the one that is numb). It's tough. So far no improvement regarding the numbness. Rats.

The A's beat the Indians this evening. "Wahoo!" Er..."Yeehaw!" (hehehe) Last year, I bought post-season tickets from a friend who has front row season tickets to A's games. Too bad they didn't make it. I am trying to time my purchase just right this year so as not to jinx anything.

Everyday I try and think of ways I can thank the folks in the Pharmacy Development department for all of those get well cards they sent me (two each week!). They signed so many of them over a four month period. Those cards were always filled with so many wonderful kind and caring thoughts and wishes. I was thinking about bringing in a huge cake that said THANK YOU on it, or maybe a huge basket of fruit... I had sent in a card, but I am not sure that they all saw it.

Joanstone is so nice. She gave me a Grande Mocha today...the effects of which I am sure to feel long into the evening hours. Sorry, Mark. HA! [yaddayaddayaddayaddayadda.....repeat.]

The Oakland Athletics are having a Breast Cancer Awareness promotion on September 25th. Because I am a survivor (and because I called the A's Community phone number to tell them that I was a survivor) they mailed me information about their Breast Cancer Day. So I called them again and they have sent me two free bleacher tickets to the game and I am registered to walk on the field during a pre-game ceremony to make a big pink ribbon along with hundreds of other survivors of this awful disease. The A's will be treating us (the survivors) and one other guest (Mark is coming with me) to a pre-game and ceremony luncheon. Plus, the game is going to be on ESPN as the Game of the Week! So watch! You might see me!

Swim A Mile For Cancer

I am registered to Swim A Mile For Women With Cancer on Oct 1, 2005 at Mills College in Oakland!

As you know I was diagnosed with Breast Cancer on February 3, 2005. I am currently undergoing Radiation Therapy. By the time of this Mile Swim I will be done with radiation! WOOHOO! Hopefully I will have more energy then. I know I can swim a mile, but have been so tired from the radiation I am glad the swim is a few weeks away still.

My friend, Mitch, told me about this fundraiser for cancer, and I couldn't pass it up.

Please sponsor me or my sister, Arlene. You can use this search page to find us under our nicknames: "Deirdre" or "Arlene". (creative, huh?)

Thank you very much,

Deirdre

https://www.wsdsecure2.com/secure/wcrc2k5/pledge/index.cfm?mode=Pledge

Update For The Week

Man, I have been so tired. I went to work on Tuesday, but I left at 11:00 am because I was not feeling well. I went to physical therapy on Wednesday, so because I had two appointments that day I took a sick day. Physical therapy was hard, and since then I have had a deep pain on the left side of my tailbone. When I left radiation therapy on Wednesday, it looked like I had a gunshot wound on my neck. It was the dressings that the girls put on my neck, actually. My neck is almost purple from the radiation. It feels bad. Anything that brushes against my neck is sure to rip the skin and make an open wound, that is why the girls at radiation put the bandages on my neck. My breast also has broken skin on it. Sherry says it must be a scratch, but I haven't scratched myself there. I think it must be from radiation. Who knows? All I know it that I am dead tired most all of the time and my neck and chest is very tender. The doctor told me I shouldn't wear a bra, but how would that work for going to work? Not well, I bet. Well I thought I would just wear a bra anyway, but I can't do that anymore. Too much irritation. I don't want an open wound.

I am considering signing up for the Swim-A-Mile For Women With Cancer. It will take place on Oct 1 and 2. If I do will you please pledge support for me?

So Tired!

I am sooo tired. I met with Dr. Carmel today and he says it can be attributed to the radiation therapy. The weekend was good. My supraclavicular area (left side of my throat at my clavicle (where shoulder meets the front of my neck) is pretty doggone red and burnt from radiation. It feels rough. Doctor says to use 1% hydrocortisone along with aloe vera gel to help. Dr. Carmel is also expecting for me to have trouble swallowing soon. Luckily, I only have a couple more shots to my supraclav. Soon I will be getting my boost. I am going to call them my boobie boosts. This is the end of my radiation regiment and it consists of high dose radiation to the area where the tumor was....exactly. I will get a couple of weeks worth of boobie boosts.

Labor Day weekend was good. Mark and I went to the Earth, Wind and Fire and Chicago concert this weekend. It was fantastic. I started getting uncomfortable early on, though. I wasn't able to stand and dance like I would have liked to (I did dance some), but just being there was great. I had to use some vicodin to get through it.

Being back at work got a lot harder today than it was last week. The fatigue is really coming on strong. I am contemplating taking more leave for the next few weeks and maybe getting dial-in access so I can access email and such. Just a few weeks to get me past the radiation therapy. It is hard to sit at the desk all day. I go for walks around the office because sitting in the chair is uncomfortable due to the degenerative disc disease that has worsened since the cancer came on.

I am starting physical therapy (PT)tomorrow. This is to work on my back and the disc problem I am having. (did you know that disk and disc can be used interchangeably?) I have been prescribed PT three times per week for four weeks to start.

Kathleen called me today. Kathleen says my pro-time is up to 1.99. Not therapeutic, though. I will increase my coumadin intake to 5 mg every Monday, Wednesday and Friday and 4 mg every other day of the week. I will recheck my pro-time in two weeks.

Back At Work

I went back to work on Thursday, September 1st. That's why I haven't posted a blog entry in a few days. Work was okay. Only 1588 email messages to sift through. By the time I left on Friday afternoon, I was down to 160.

I left work earlier than I had planned on Thursday. I left at 2 pm absolutely exhausted. I went straight to radiation therapy (they took me even though I was an hour early), and after that I went right home and had a four hour nap. I was tired.

Friday I managed to stick it out until 2:45 pm. I will make sure I bring my Norco (pain medication) to work with me from now on. Sitting in the chair at work is hard on my back. I took a couple of walks during the day to help take the pressure off my back - it seemed to help.

On Thursday morning I went down the hall to introduce myself and to thank Paula D. (interim Director of Pharmacy- MIS) for her intervention with the H.R. Department on my behalf. Paula is a wonderful lady. She let me know that she cares about me and that she will help me in any way she can. I told her I was a little frightened bythe pressure my supervisor was putting on me. She said she would talk to the new director and let them know that I will need time to get up to speed. She also assured me (and will remind my boss and new director) that she approved contract help for the department while I am recovering and she asked me to do only what I feel up to doing since I am back at work already.

Seeing everyone again was wonderful. It is nice to be back.

Radiation Side Effects Are Kickin' In

They say the fourth week of radiation is when the side effects of radiation start to kick in. They are so right.

"Sun Burned" skin? Check.

Evening nausea? Check.

Exhaustion and fatigue? Check. Double-check. Exclamation point.

I had another bad day the other day. It was the day I really started to notice the side effects. I actually thought the side effects were early...or rather, I didn't know what I was feeling was the side effects because I didn't expect them until after the fourth week. Actually, the side effects come IN the fourth week, not after it.

I was just feeling so darn tired! It was like the tiredness I was feeling when I had low red blood cells after chemo about a month ago. With the tiredness comes a depression because you feel so helpless. However, once I figured out that I was feeling the effects of the radiation, the depression started to ease. It is helpful to know that there is a reason for the fatigue and that the fatigue is important for me to feel - I AM KILLING CANCER!

I am still feeling exhausted all the time, but I know that I only have a few more weeks of radiation therapy left, so that makes it bearable. I also feel heartburn and slight nausea at night when I go to bed.

Pro-Time Update

My blood clot time went down again to 1.72 (17 seconds to clot). So, in order to get the Coumadin to be therapeutic, gotta increase my daily dose from 4 mg per day to 5 mg on Mondays and Thursdays and 4 mg all the other days in the week.

Is this boring information? I think it is. Maybe it gives you, the reader, a sense of how much blood testing I have to do regularly.

Kathleen, my chemo nurse practicioner, tells me that as long as I have the chemo port in my arm, I will have the clot. No one has told me to get ready to have it taken out. I ran into a woman I met in my breast cancer support group - she finished her chemo one month ago and her port has already been removed. I am not sure how long I will have my port in. I hope I don't have it forever, but you never know. After all, I am stage IV cancer. I guess that gives me the highest probability that I will need the chemo port again at some point in my life. As it is now, Dr. Sherman says I will probably have to take Aredia, the bone strengthening drug, for the rest of my life. Aredia is administered via IV (intravenous) drip once a month, so we use the chemo port for that.

My Radiation Therapy

I got some information from Dr. Carmel about my radiation. I had him write it down so I could share it with my friend, Mitch. Mitch used to work with nuclear energy. Here is what Dr. Carmel said:

6 & 15 MV (megavolt = 1 million volts) xrays are what they are using for my radiation therapy.

200 cGy per day

centigray (cen·ti·gray) (sen¢t[ibreve]-gr[amacr]²) a unit of absorbed radiation dose equal to one hundredth of a gray, or 1 rad; abbreviated cGy

That's a lot of lightbulbs.

Here is a link to an article about The Basics Of Radiation Therapy that I found helpful.

Lance Armstrong's Autograph

As I was getting radiation treatment today I noticed someone was hanging this on the wall: A bicycle jersey signed by Lance Armstrong! How cool is that? I asked if he had actually come to Walnut Creek to sign it. Margaret (the boss) told me he was slated to come to dedicate the new brain machine at John Muir - he is the brain machine company's spokeperson - but his kids got sick and he had to cancel. So, we send him the jersey and it came back signed. Nice, huh?

Jennifer

Here is a picture of Jennifer. Jennifer works at Dr. Sherman's office as a Medical Assistant. Jennifer is usually the one who calls me into my appointments with Dr. Sherman. She takes my blood pressure and pulse and temperature. And sometimes she can be persuaded to "just skip the weighing part this time?"

Kristen

I finally got a picture of Kristen. She's nuts. She is so funny. You would love her. Kristen works at Radiation Oncology.

Luau At Radiation Oncology

Aloha! Wow, what a nice place, that Radiation Oncology department. Today there was a all-day party - a luau to celebrate the end of summer. Isn't that nice? I am going to have them email me photos of everyone to post here. They gave away leis (everyone got lei'ed today), gift bags (water bottles, bandage dispensers, sunscreen and mints), and there was tons of food on a big table in the reception area. Those folks really know how to make it a nice place - if you have to come everyday. They even had Hawaiian music playing in the radiation room.

Aredia Drip #2

We had an interesting day at Dr. Sherman's office on Friday. Once a month I get my bone strengthener medicine: Aredia. Friday was my second infusion.

I was there for about ten minutes when a nice older man (83 years old) sat down in the chair next to me. He was a quiet man. Didn't say much. I did overhear that he was there for the same thing I was: Aredia. His name was Mr. S.

I noticed he had a tattoo on his left arm. I asked him what it was. He told me it was his tattoo from Auschwitz. Gasp!

Mark and I were in awe, and we were all ears. Through a few tears, Mr. S. told us about his internment, how he lost 70 of his family members and was the only person left of his family. He told us of the job he did while in the camp (airplane scrapper), and he told us of his arrival in the United States.

Mr. S. looks good. He looks strong. He lives nearby and has a single daugther, no grandchildren. Gwen (the chemo nurse) asked Mr. S. and me when we'd like to come back in for our next appointment and I said, "I want to come back the same day as Mr. S.!"

You never know who you will run into at the doctor's office. It isn't hard for me to start a conversation because in a doctor's office, you always have something in common.

One thing I have learned with cancer: I have a lot to learn. I do a lot more listening than talking these days.

James Taylor Concert

I went to the James Taylor concert last night at the Greek Theater. I was pretty nervous about it. I was nervous about the walk to the theater from parking, about how I was going to climb the stairs to our seats. Until you experience chemotherapy, you might think you know how difficult it can be to move around, but you don't. I didn't. Not until chemotherapy. This was my first real outing since the chemo. I have been afraid to go out. I tried once before: Cleveland v. SF back in June. We (Mark and I) ended up going home before the first pitch. Well, last night was successful. I made it out. Yeah! Chemo drains all of the breath out of you. I feel so proud of myself. Thank you, Yolanda and Saul for a great evening.

This picture was taken by my sister, Arlene. Arlene came over after she got off work yesterday to help me with my makeup. I wore one of the wigs she gave me when I was diagnosed with cancer. Last night was the first time I wore a wig out (besides the few times I wore wigs to the radiation oncology department - which is another story I will get to later). She helped me with the wig, and drawing in eyebrows and helping me with mascara on the very few (5) eyelashes I had left, and all the of new growth I have in the way of new eyelashes. I am so excited to see the new eyelashes growing in! I am not so excited about the eyebrows that I will have to start tweezing again, or the underarm hairs that I will have to start shaving again. Anyway, Arlene does great makeup work. Arlene was here with me when my hair started coming out, and got me through shaving it off. Now she is here with me while my hair grows back in, and here for me to get my makeup on again and go out. It is so nice to have a sister to go through those things with you. I am very lucky. I have two of them.

Which Blood Test When?

I am so confused about when I am supposed to get which blood test. I can't figure it out.

Here is what I do know:

• I see Dr. Sherman every month, right before I get my Aredia IV drip. This is so that he can look at my liver function and verify that I can get the drip. The liver panel is available on the Big Labs, which takes three days for the results to get back to my Dr. Sherman.
• I need to get my pro-time checked (for my blood clotting time) as directed by Dr. Sherman or Cindy or Kathleen. Sometimes they might have me check it in a week, or it could be two weeks. It depends on if there has been an adjustment to my Coumadin or not. The results for the Pro-Time take about three hours and Quest Diagnostics usually runs the results upstairs (I don't have to wait for them).
• The CBC is what I used to get every two weeks before chemo. This is to check my white and red blood cell counts. Until last week I was continuing with the cbcs every other week because it took that long (since the beginning of July) to get my reb blood cells back in shape. I don't know if I am supposed to get cbcs anymore.
• The BIG LABS includes the cbc and the pro-time, too.
• Dr. Carmel just sent me over to Quest last week for a cbc for his office, too. He asked me if whenever I get blood work done, to have them send Dr. Carmel a copy as well.

(I asked Quest if they could just send Dr. Carmel a copy of the one for Dr. Sherman and they told me I would have to have Dr. Sherman authorize that Dr. Carmel can get a copy. Geez. So, I did ask the receptionist up at Dr. Sherman's office to add Dr. Carmel on the list of "folks who get a copy" and it never happened, apparently.)

Maybe I will just go every week to Quest and get Big Labs drawn. Twice. Once for Dr. Sherman, and once for Dr. Carmel.

Another Adjustment

My Pro-Time is too high still. Cindy called me last week to let me know my pro-time was 3.43. She told me I should take 2 mg of Coumadin nightly instead of what I was taking already.

That confused me. At that time I was taking 5 mg per day. Now she wants me to go down to 2 mg per day. Seemed kind of drastic to me.

I saw Dr. Sherman the next day and he said the information in my file was incorrect - they didn't know I was on 5's....so he adjusted me to taking 4 mgs per day.

That's why we are a team. ;-)

The Blasts (of radiation)

In case I didn't mention it....you can't feel the "blasts" (as I call them) of radiation at all. You hear the machine, but you don't feel a thing. ;-)

No Spam!

I just changed the settings for this blog. Now, if you want to leave a comment on a post (and I wish you would!), you need to be a registered user. It just takes a minute or two. I had to change it because someone figured out how to send spam through blogs on blogspot. This has not been a problem up until last week. Since last week I have received several comments that were just pure spam.

So, sorry that I had to change the comment requirements. I really do appreciate bona fide comments from people who read my blog. I really do enjoy them: they let me know someone is reading this thing!

Radiation Oncology ...continued

Okay, so I'm lying on my back with my arm way up over my head. They keep the room is pretty cool (which is kinda nice, since it's about 96 degrees outside). Now I have my hospital gown over whatever pants I wore to radiation and my left breast is exposed. The radiation therapists are in the room, Sharpies in hand (locked and loaded).

Then, all of a sudden, it's like I'm in some weird kind of bingo hall. Everyone starts shouting out these weird numbers and coordinates and settings: "Tilt is 20" or "First tabletop = 20.8" and "SSD (source to skin distance) 100" and "Shift 9.2". Sometimes they say "2 cm inf (inferior)" or "353.5". What I've come to learn is that these are my personal table and machine settings. These settings assure I am lying on the table in the exact way every time, so the radiation machine hits me in the same place every time. I THINK that they use them to trace the lines cast on me from the radiation machine to help "line up" the next blast I get. The radiation machine has something like cross-hairs and they are projected on my chest like a projector projects onto a movie screen. Once the therapists have me on the table in the correct position, they make tick marks on my chest which they use to line up successive shots. Once while they were drawing on me, I said, "when I put my arm down it looks like a smiley face". When I got in the shower the next day, I saw that Gretchen had actually drawn a smiley face on my shoulder. HA! Who says those therapists don't have a sense of humor?

And so it goes. The therapists come in after each blast of radiation to adjust me (or the table I'm on) in some way, or to change the block.

[When they are radiating my breast they put a cartridge on the xray machine that has a block on it to shield my face from the rays. When the machine moves to shoot the breast from the other side, they switch out the cartridge - which seems to be made from acrylic or plexiglass or something like that, and the block is made or sero (I think that's what Robert called it - it looks like pewter or some kind of silver metal) - so that my face is protected from the other side - kind of like putting on a right handed baseball glove to catch with your right hand, then putting on a left handed baseball glove to catch with your left hand.]

The machine gives me a blast of radiation to my left breast from the right side, then a blast of the same breast from the left side. Then the machine goes upside down and blasts my axilla area ( underarm) from the bottom up, and finally a 40 second blast to my supraclavicular area.

Yesterday, however, we added another field to the "radiation dance". We added my left humerus. Ha Ha. Very funny. (I couldn't resist)

So, after my supraclav blast, I get up off the table and the therapists lean over the table and after five or ten seconds and a flurry of arm movements, the table is transformed. It is now flat and the leg rest has been removed and the headrest replaced. I lie down (again, on my back) and hoist my arm way back and flat on the table above my head.

The arm doesn't take as long to blast. Just two shots: one from the top and one from underneath.

The entire radiation appointment is quite pleasant, now that I am getting to know the therapists and the procedures. It was a little frightening at first: all sorts of activity that I had no clue about and I didn't know the people who were touching me. I was told not to speak, you know. I guess speaking moves your body.... Anyway there was a point where I was considering using my own sharpie on my left breast before my appointment. I was just going to write "Hi! How are y'all doing?" ...hoping that would get them to laugh and maybe loosen up a bit.

I didn't have to resort to defacing my own body, thanks to every patient's advocate, Kristen. I told Kristen I was lonely because no one would talk to me or tell me what was going on, and she went screaming down the hall "Talk to Deirdre! Make SURE you talk to Deirdre!" Except she said "DEE-Dra" or maybe she said "The Blogger"..she likes to call me "The Blogger".

Now I can't get any quiet in the radiation room. ;-) (just kidding)

I really enjoy my radiation appointments. I do. And the ice cream is only part of the reason.

The Radiation Machine

Radiation Therapists

Keith

Iris and Gretchen

Lourdes (intern)

John

Paul

and Sherry

Sherry giving me "the finger"

Radiation Oncology at John Muir Hospital

What a great place to go everyday! They give ice cream to the patients while they wait. Can you believe it? You get a choice of either vanilla or orange sherbet. I like the orange.

Here is what happens when I go to radiation therapy:

When I come in, I get the best greeting by the amiable Kristin (who flatly refuses to be photographed). Kristin calls me "Blogger". Kristin (or someone like Kristin) sees me enter the reception area at Radiation Oncology and they "queue me in", meaning they let the technicians know that I have arrived. I wave at Kristin and go through the swinging doors (like in a saloon) to the patients' queue area. I call it the "VIP Lounge". It is nice in the VIP Lounge because that's where I get to watch TV and have ice cream!

After some time in the VIP Lounge, I get "the finger". Meaning: one of the technicians comes out of the door and wags his or her finger at me. When I get: "the finger" it is my turn on the radiation machine.

Once in the radiation room, I lie down on the bed thingy and they have something they put under my knees to make my back comfortable, and I rest my head in a cup-like thing and my left arm goes over my head and into some contraption to keep it there. Then after it is confirmed that I am lying in the correct position (it must be the same every day!) out come the Sharpies and the artistry begins.

...to be continued.

Great Appointment Today

We had a great appointment today with Dr. Michael P. (as in Paul) Sherman. I found out why I sometimes need "big labs" and I found out why cancer comes back when it seems like it was gone after chemotherapy, and I got a couple of referrals to doctors for a couple of other nagging concerns (my toe and my left leg). Dr. Sherman also explained how radiation (xrays) kill cancer cells. I can't explain that for you here, though...maybe Mark can remember.

I need "big labs" every month so Dr. Sherman can watch my tumor markers! Actually, he said he will look at my tumor marker results every three months but we should have the "big labs" every month so he can look at a graph instead of a couple of points. Makes sense to me. I just have to remember to get to the lab (Quest Diagnostics) three days before my monthly appointment with Dr. Sherman so he can have the results in time for my appointment. (it takes three days to get results back on "big labs"). My CA-27.29 were a little high last time so we will continue watching them. My pro-thrombin time was also high (3.43) so he told me to take 4 mg of Coumadin per day instead of the 5 mg I have been taking (that's for the blood clot - Coumadin is an anticoagulant). My red blood cells are good this week so I didn't need a shot of Aranesp. THANK GOODNESS! Those shots hurt. I also need "big labs" every month right before my IV Drip of Aredia (bone strengthener) so Dr. Sherman can check my liver function and make sure I can take the Aredia.

I showed Dr. Sherman my toe on my left foot and he referred me to a dermatologist. He says it looks like I might have a "_______ _______ melanoma". I forgot what he called it..except for the last word. Kind of stuck in my memory for some reason...duh. Dr. Becker is the name of the dermatologist. My appointment with Dr. Becker's Physician's Assistant is next week, Aug 24th.

Dr. Sherman also referred me to an orthopedic surgeon for the numbness I have in my left leg. I forgot his name, but I am going to call him this afternoon, too. I am waiting for them to call me back to get an appointment. I think it's going to be at Muir Orthopedics.

Fuzziness

My hair is coming back in. I noticed the other day: I saw some peach fuzz on the sides of my head. Ha!

I don't see much on top...maybe I am going to turn out like George Costanza? Nah...it's probably because I can't see the top of my head as well as I can see the sides.

Mark was telling me I had stubble, but I have had stubble the entire time...the stubble just doesn't grow. But I took a closer look and yes, in fact, I do have new growth!

I did notice at swimming on Saturday that the goosebumps on my chest had very short, fine hairs coming out of them. This is also new.

So Mark teases me about having 5 o'clock shadow on my head. Cute.

Distortion

Now is the hard part. Now it is hard NOT to think I have cancer popping up in the slightest sniffle or cough or other minor malady. For example, I have been coughing quite a bit lately. Dr. Carmel told me I might experience some of this in the last couple of weeks of radiation thereapy, so I am coughing a bit early. I am not sure if the coughing is due to the radiation, or the fact that I have slept with the windows open fo the last week. OR, is it cancer in my lungs? (highly unlikely) I have also noticed a black spot on my left big toe's toenail. There is also slight swelling at the base of my nailbed on the same toe. Is it cancer? (again, highly unlikely - but I will defintely get this checked this week)

I went swimming this weekend. 52 laps. Amazing isn't it? What I wish I could do now is sit up for more than 30 minutes at a time. Anything more than 30 minutes now and I can no longer take the strain on my lower back and I need to lie down. Swimming really makes me feel good - there is no strain on my back when I swim. I wish I could spend the day in the water. Dr. Sreenivasan is going to refer me for physical therapy (for my back) but not until after radiation therapy is complete...which won't be for another five weeks. I am worried about how I am going to make it through an 8 hour day back at work starting two weeks from now if I can barely stay in a sitting position for 30 minutes.

Not Much To Report...

Nothing much to report. I still have neuropathy in my feet. Not so much in my fingers so the buttons on Mark's shirt no longer give me problems. Still have numbness in my left leg due to the sciatica.

Feeling Better - Thank You Lance

For a while there I wasn't feeling well at all. I was so tired all the time. Even getting up in the night to use the restroom left me panting when I got back into bed. This brought on a bit of depression, I believe. It is a very difficult thing to get sick. We take our health for granted, don't we?

I have been feeling better. I don't get out of breath using the bathroom anymore, but I have a long way to go to get back to where I was before cancer. I try to do something at least three times per week, either going for a walk or swimming.

I have been reading Lance Armstrong's books. It is only because of these books that I realized that the fatigue was normal for a cancer patient. I was getting down on myself because I thought it was the weight gain. (OH yeah! Here's something: Dr. Carmel - my radiation oncologist - tells me that 9 out of 10 cancer patients gain weight during chemotherapy!) Lance's books are great and so inspiring. I would love to meet him one day.

Lance is going to be on HBO tomorrow night: CostasNOW at 9:00pm PDT. The Discovery Channel is also going to be re-airing the series CHASING LANCE on Aug 27 and 28 so check it out. I plan on spending the entire weekend in front of the big TV.

Nausea

I just had my sixth radiation treatment and I am wondering that has anything to do with the nausea I felt for the last two nights. It's just a little nausea...but noticeable.

They Will Remember Me

When I was first diagnosed with breast cancer in February of 2005, one of the things that worried me was how I would be treated once my hair fell out. I wondered how I would handle myself if anyone made a comment about it, or if anyone stared or laughed at me. What a wonderful thing: I have felt so loved! In fact, I have felt that I am better taken care of by the general public as a bald woman that I had been treated before I began cancer treatment. People are gracious and courteous. Wonderful.

Well I was batting .1000 until a couple of weeks ago - when I went grocery shopping at Raley's supermarket. I was making my way through the store with my cart, and as I passed by a group of three black children, they exploded with laughter on sight of me. They apparently tried to stifle their laughing until I went down a different aisle, and then again broke into laughter and made comments about my bald head among themselves when they could no longer see my face. However, they were to be faced with me again, as the aisles we were traveling converged. I made it a point to look into each of their eyes. I wasn't mad at them. But you know what? I want them to remember me.

They are young now, and maybe they haven't seen a bald woman before. But they have now. They may have never seen a woman with cancer before, but they have now. Maybe they just don't know what it is about. I believe they knew that laughing at me was not a nice thing to do...they appeared to be trying to hide it.

One day someone near to them will be stricken with this ugly disease. This is not my wish, it is inevitable. Maybe then they will know what cancer looks like. Cancer is not something you get at Christmas because you asked Santa for it. Cancer is nothing you sign up for. You can't even earn it if you try.

When they are touched with cancer, they will remember me. I will be the woman they laughed at in the grocery store that one day. The one they poked fun at and talked about all that afternoon. I will be the woman who did not cry when they laughed. I will be the woman who looked them in the eye without judgement.

They will remember me.

Xrays

Mark asked the doctor about the radiation therapy...what kind of rays would be used... Dr. Carmel says they are using high powered xrays. I counted and the last blast of xrays was for about 38 seconds (the one to my supraclavicular area). Whew!

I am starting to see and feel a little sunburn already on the left side of my chest. It seems a little early, but....whatever.

Sherry, one of the technicians, set me up with an appointment to "sim" my arm next Monday. I am looking forward to that. After this happens we will be ready to zap my laft arm, too. That is where the metastasis occurred.

I got an email from a mailing list I apparently signed up for in February (hehehe). First one. It is from The Wellness Community. The Wellness Community (TWC) is a national nonprofit organization that provides support, education and hope to people with cancer and their loved ones.

Anyway, the interesting thing about that email is that is had an link to an article on a guy named TOM CRONAN who did a wonderful thing: he made a W.A.R. on cancer. Read about it here.

Here is an exerpt from the article: The Wellness Community of San Francisco East Bay welcomed cancer survivor, Tom Cronan, on May 19th as he celebrated the final stop of his 6,600-mile cross-country motorcycle journey to raise cancer awareness. A pancreatic cancer survivor, Tom embarked on his challenging cross-country journey in March, visiting 22 affiliates of The Wellness Community nationwide to raise awareness about cancer survivorship and the free services available through The Wellness Community.

(I am thinking that by his last name we MUST be related...there are only a handful of CRONAN's in the USA)

Radiation Therapy Is TORTURE

Well, not really torture. It's just that I can't talk, and I can't move AT ALL. That means no cracking jokes, no getting to know the technicians. For crying out loud, I want to know the people who see my breast every day, and most times TOUCH IT, ya feel me? Hehehe.

And, get this, in the radiation room they play music that I know and would normally just sing right along with...and I can't even do that. Not fair.

I met with Dr. Carmel after my appointment today. I guess it was just to check in after I had been through a couple of radiation sessions and to give me the opportunity to discuss any concerns. I had none and neither did he. He is very thorough!

Dr. Carmel did say that he spoke with Dr. Sherman about my arm and treating it with radiation. Dr. Carmel said it would only be ten treatments. He put a note in my file to have someone schedule a simulation for my arm sometime in the next few weeks. Plenty of time. He said I should be happy during those treatments: I can talk and sing as much as I want.

Dr. Carmel

Here is Dr. Carmel.

CARMEL!

I got the doctor's name wrong. It's not Dr. Carmello, it's Dr. Carmel. I'll try to get a picture of him next time I go in (tomorrow).

Radioactivity

Well, I just got back from my very first radiation therapy session. I didn't feel a thing! I get four different shots (for lack of a better word) of radiation per session. One is aimed at my left breast from the right side. Another they call the "lateral", which is from the left side. The third one is aimed at the axilla. And the last one is for the supraclavicular area. Here is a link that shows an example of the area that gets radiated for breast cancer. The folks at the radiology oncology place told me I am "unusual". They were talking about my settings for the machine. I think. Just kidding. They were referring to the machine settings. Oh well, not like I ever considered myself normal. Ha!

I went to Longs today to get the recommended deodorant (no aluminum!) and some Aloe Vera gel for the sunburns that I will be developing.

Looks like I am going to be off work another thirty days thanks to the nice people at my office. See, what happened was that I miscalculated the length of time the FLMA allowed me to be off for this cancer treatment. I thought it was three months, which would have me back to work on Monday, August 8th. In actuality, it was twelve weeks off, which should have had me back to work already (July 31st). Rats! I didn't know I was mistaken until I got a notice in the mail from the HR department telling me that my thirty day personal leave was approved. Thanks so much, Paula!

All in all it was a good day today. I feel happy to start my radiation at last. I am happy to do whatever it takes to get my life back in order...to be healthy again.

A note to Marina: Thank you for reading my blog. I noticed when you guys took me to lunch. You had all the information I had put in this blog. I am impressed, and humbled. You are a very nice lady.

As a matter of fact, thanks to all of you who read my blog. Again, I am humbled by your interest and concern. Oh yeah, a couple more things:

• Thank you, Pharmacy Dept. for the gift - it was too much, but I will do my best to spend it all!
• Thank you, Quality Assurance Team - the orchid and the colorpot are beautiful additions to my home.

Thanks again to everyone who came to my party. It was great to have you all around me again. Lots of people don't like to have birthday parties when they get older, but I have to tell you: I recommend them! And believe me, I didn't have a party for the presents (although that was a nice bonus!), I had a party to be with the people I love. It was priceless.

Lordy, Lordy! Deirdre is 40!

Happy Birthday to meeeeeeee! I have so much to be thankful for. So much to live for! I had a party on Sunday to celebrate. It was a great time! My brother came and brought his guitars and he and my uncle George played and sang - Eleanor Ripalda, too! (She is family to me as well!) Mark did a fantastic job at being chef and also was the host with the most. It was a great night. Did I tell you what Mark gave me for my birthday? A BRAND NEW CAR! It's a 2005 Ford Escape XLT Sport! Woohoo! ...for getting back and forth to cancer radiation treatment, of course ;-)

Tomorrow I have an appointment at the radiation oncology department. It is another preparatory appointment with Dr. Carmello. The radiation will begin (for real) on Thursday, August 4th.

Radiation To Include My Arm

Dr. Sherman is going to speak with Dr. Carmello about including my arm in the radiation therapy. I guess that means that the area to be radiated will be enlarged to include my humerus....the part that had the cancer in it. I think this means that I will need to spend more time getting "mapped" out for the CT Scan at the radiation place. I wonder if that means I will need another appointment?

Aredia

Dr. Sherman is going to start me on Aredia on Friday morning. Aredia is a drug I will be getting through an IV to help strengthen my bones. It will take three hours to administer.

Aredia - Use and Side Effects Information

	What is the medication Aredia used for? What are Aredia' side effects? What happens with some types of cancer is that cells break away from the original tumor, travel through the bloodstream, and begin to grow somewhere else in the body. This process is called metastasis. In certain cancers such as breast, multiple myeloma, kidney or prostate cancers the bone is a common site for metastasis. The bone metastases secrete substances that can cause cells called osteoclasts to dissolve or "eat away" a portion of the bone. These lesions weaken the bone and can lead to complications. Some of the complications are bone pain, fractures, and less commonly, calcium levels in the blood can become dangerously high as a result of the bone breakdown. Aredia is one medication that fits into the class of medications called biphosphonates. Biphosphonate medications are used to slow down the osteoclast's effects on the bone. In doing this it can be useful in slowing down or preventing the complications (bone pain, fractures, or high calcium levels) of the bone breakdown. Biphosphonates may be given while a person is receiving other chemotherapy to treat cancer, or it may be given alone to treat high calcium levels, or bone pain. Aredia side effects: Some of the more common side effects that have been reported in studies of patients taking Aredia were; fatigue, fever, nausea, vomiting, anemia and skeletal pain. However it is thought that some of these reported side effects of Aredia may be due to other treatments patients were on or the cancer itself. Sometimes patients reported muscle and joint pains within 1 to 3 days after the second or third treatment of Aredia. The doctor may recommend a mild pain reliever that may help prevent or relieve these symptoms. Aredia is cleared from the body through the kidneys. Even if a person's kidneys are not working properly, studies show that changes in the dosage of Aredia should not be necessary. However, Aredia has not been studied in many patients with severe kidney problems.