Update Coming Soon!

...I swear. In the meantime, you can check out http://yomarky.blogspot.com

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

Typical 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!

I think Dr. Sherman might have had his mind on Thanksgiving Dinner during that last appointment. He was not sure which hormone therapy I was taking. I don't think he could even tell by looking at my file (which was open on his lap). ARIMIDEX. He also forgot that my appointment was for him to review my lab work, just like he does every month before my Zometa infusion. Another example: at the end of my appointment he writes up a slip that I give to the scheduler on my way out. This form tells what I will need for the next visit, and when that visit should be scheduled. He had me down to see him again in two months - but I am supposed to be seen every month. "Ah, you're right, " he said. He corrected his form. Imagine if I did not question that? He also forgot to make a note on a new lab order that results should be sent cc: to my primary care physician.

I know everybody has bad days. I just wish he wouldn't say "How did we forget that?" or "I can believe we overlooked that prescription/shot/lab order form" or "I thought I had scheduled that for you?" as often as he does. Maybe HE has chemo-brain...

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.