Exhaustion and Isolation

Hello, Reader!  Here’s what happened this weekend in my world.

I had a wonderful visit from a dear friend on Saturday afternoon.  And she brought food!  Wow!  The food was delicious and it was so nice to visit with her.  I just had chemotherapy last Wednesday and I was pretty tuckered out, but that is normal, really.  Everyday is exhausting, just a different degree of exhausting, you know?  I am so grateful for the visit...this condition has a way of isolating the people who are fighting it.  

It actually is the fatigue that plays a major role in the isolation.  You have little to no energy to even move around your home some days.  “Getting out” can be quite ambitious.  Not that I am house-bound.

A visit from a friend can do so much for someone like me.  It keeps a person connected to their community in a way.  And there is nothing like a hug in real life.

This is just a quick post to let you know I am alright...moving forward...counting my blessings...

You are my blessings.

My husband and I sporting our twin domes.

I have a bit of blog updating to get done!

Hello Friend!

I just realized that I have quite a bit of work ahead of me in updating this 14+ year old blog.  I have changed ISP since this blog was published in 2005 and there are bad navigation links that need attending to. I have also changed oncologists so...yes.  Work to do.  I will get to that in time.  Yes, I also got engaged in 2006 and my fiance was diagnosed with testicular cancer in 2007.  We got married shortly after his diagnosis......a bunch of good living to write about!

Let me tell you about how I am feeling today:
I feel good.  I didn't sleep well last night...but I took a nap today and I think I am good.  I feel somewhat bloated and I am pretty sure that is the Decadron that I am allowed to take during the nabpaclitaxel (Abraxane) chemotherapy.  I take it to step down more slowly than "cold turkey" on the third day of the cycle.  During the first cycle of Abraxane (I am on my third cycle now) I was knocked off my feet.  Zero energy...like ZERO.  Turning over in bed was a struggle.  Yes, this treatment regimen is my first time back on systemic treatment via IV since 2005.  I was caught off guard by the lack of energy on day three back on September 25th.   I should not have been surprised, though, because I clearly recall my own experience in April 2005 with Adriamycin,  Cytoxan & Taxol.  It was rough.  Can you imagine having to take a couple of minutes on the edge of the bed in order to summon up the energy to just to get to the bathroom for your first tinkle of the day?   Brutal!    It was like that.  I mean 2005 was almost 15 years ago and I was not in the best physical shape then, I am certainly in worse shape now.   39 years old seems so long ago heehee.

DON'T LET YESTERDAY TAKE UP TOO MUCH OF TODAY.

So let's look forward:
I have completed my third cycle of Abraxane and the next step would have been a PET Scan to see what effect this drug has had (if any) on my cancer.  Unfortunately my insurance would not authorize a PET Scan for me at this time.  So, I am scheduled instead for a CT Scan tomorrow at DVOH and a Bone Scan at JMWC on December 3rd.  I was pretty anxious for PET results because Abraxane's side effects are rough, and, well...we want to know if we have found something to quiet this cancer.  Nothing this year has proven effective at even keeping the cancer stable.  [sigh]  However, the insurance company makes the rules most times, so I comply like a good subscriber.  It just means a couple of weeks delay in finding out if Abraxane is working.  I fell that it is, but we will see.

That is a little bit of what is bouncing around in my bald head this evening.  I will post a photograph of my husband Mark and me...we have twin chrome domes these days...

SEP 2019 PET scan results & next steps

So I had a PET scan on Monday, Sep 9 and I got a phone call from my oncologist two days later.  She wanted me to come in (presumably to hear the results of the PET) the following day.  Yikes.

In the past the results of my scans would be phoned to me by one of the medical assistants letting me know that the cancer is “stable” or “nothing new”.  That I needed to come in to see the oncologist for my results had me thinking the results were not so good.  But, I calmed down by reminding myself that this was my new oncologist and that this was my first scan....maybe she wants just to give these results to me in person the first time.

Yeah, no such luck.

The PET scan results showed progression of the cancer in my liver.  Another lesion.  And more intense activity in the existing tumors.  Deep breath.

Okay, that means I can stop taking the CAPECITABINE (brand name Xeloda).  Hurrah!  That drug has made my palms and soles of my feet dark-colored and spotty.  The skin is tight and peeling.  The nurse practitioner says my skin will go back to normal in a few weeks.

Next step: intravenous chemotherapy.  Agent: nab-paclitaxel.

Hopefully I will start the nab-paclitaxel this week....like Friday.

Cheers!

Shitty to have something to write about.  

My breast cancer, previously metastatic only to my bones has now spread to my liver.  Pfft.  Not good news, but not the worst news, either.  The universe has gotten my attention by adding the cancer to my liver.  Not too much cancer, only one solitary lesion, really…but a little cancer is just a different amount of cancer.  Sucks in small portions and large.  That’s where I am at.  I feel like I am at the beginning of a ride at an amusement park…and I have no idea how long the ride lasts, or what kind of horrors lie ahead of me.  What am I to do?  Nothing else to do but get my head in the game.  Be ready for the next appointment, procedure, co-pay, claim, deductible and balance due.

Shitty to have something to write about.

This is a warm-up

Okay, I am going to make this a quick post so I can actually post it.

It is 9:26 pm on the evening of September  25, 2018.  I am feeling OKAY today

Even though I felt pain yesterday I am happy that I pushed myself to get out.  Mark took me to see Neil LeGrasse Tyson at Davies Symphony Hall (War Memorial) in San Francisco!  That was the second time we saw him in the City, but the first time we got there for the beginning of the show {LOL}.  The man is funny!  He seemed a little grumpy.  Thinking about it now, that's probably just the act.  He was poking fun at the USA (us), and our lack of excellence in science.

As I do 21 evenings out of every month I have taken my Ibrance medicine with other stuff I take to manage the side effects of having cancer.  The Ibrance is taken by mouth like a birth control pill: 3 weeks on, 1 weeks off.

Thanks for reading.

I titled this post a "warm-up" because it really is not going to talk much about my journey, it is just to get my fingerprints used to typing again!

Next time though...

Welcome to 2014!

I have put my seatbelt on.  Got my helmet on.  Gameface?  You know it.  (just in case...)

Today I saw my primary care physician, Dr. Patrick Jolin.  I saw him today because I noticed my left breast didn't feel exactly right. [go ahead and laugh..."left didn't feel right" heeheehee]  What I mean to say is that it didn't feel normal.

You see, some days my cat, Li'l Katie (or Katie 2.0), is so happy to see me when I get home from work at the optometrist's office that she can't help but climb up on me to get petted.  If I happen to have my iPad in front of me, she is even more likely to climb up directly in between my face and my iPad.  Recently, I was on my back the floor checking in with my mother-in-law via FaceTime and along comes Li'l Katie...walking all over me eventually pawing her way across my chest.  One of her paws hit me right square on the nipple of my left breast (the breast that had cancer back in 2005). This smarted!  Yowch!  I removed her from my person immediately, of course, with a few harsh words.  But a couple of hours later I realized my left breast was still a bit tender.  Weird...shouldn't still be hurting, right?  Hmmm, I thought.  So then the next day I was aware that my breast was a teeny bit sore still so I made an appointment to see Dr. Jolin for a clinical breast exam.

I called Dr. Jolin's office and he was able to get me in today = awesome.  I described to him what I think happened and I showed him where in my breast I thought I felt a little something that might be a lump.  He felt around, but we agree that we didn't feel an actual lump but what would be better described as a "thickening", which was one of the descriptors on the form he completed to request a diagnostic mammogram for me.

Dr. Jolin is very nice.  He is my husband's doctor, too.  He became my doctor when my previous primary care doctor sent me a letter advising me that she is closing her practice to work strictly with the hospital, and telling me that I need to look for another doctor.  Nice. So, time passed - probably two years -  and I had not yet found a primary care physician, but I needed knee replacement surgery.  In order to have the surgery, I would have to have my regular doctor clear me for my knee replacement surgery, so when the orthopedic surgeon's admininistrative staff asked me who will sign off I asked them to send it to Dr. Jolin.  Heehee!  He called me shortly after receiving several faxes from my surgeon's office - I was so embarrassed!  I apologized and told him I had been meaning to call to set up an initial appointment. Isn't that nuts?  Anyway, the point is, he is very nice, and a cancer survivor, himself.  I think he is a 5 year survivor at this point.

So Dr. Jolin wrote a referral for me to get a diagnostic mammogram which is a mammogram plus an ultrasound.  I called and made the appointment as soon as I got to my car in the parking lot.  I will give you an update on that when I get it done.

Cheers!

Happy New Year 2009

I had my monthly appointment at the infusion center on Friday. I went in for my Zometa and also a shot of Lupron to keep my ovary function stopped. I forgot to get my labs done - I think because of the New Year holiday - at least that's what I will blame it on. I met another wonderful lady also getting treatment for cancer. She is a lung cancer patient. She was also getting Zometa. It was nice talking to her...I was able to talk about something I don't get the chance to talk much about - and that is menopause. She had breast cancer about 14 years ago - the lung cancer is her second primary cancer - What a woman! Her breast cancer tumor was also estrogen receptor positive - like mine. I even shed a few tears while talking to her. It is difficult when you go into menopause at the age of 39 years old because none of your friends understand what you are going through. Thanks you Noriko, for talking with me, and understanding.

3 years later...

HI there! I just wanted to put up an update on my condition - since it has been three years since I have done so! LOL! Okay. I am still in treatment. I go in every month for some bone medicine. It gets pushed through my IV. I am still on Arimidex - to curb estrogen production (also a shot of Lupron every 3 months to keep my ovaries out of order) because my tumor likes estrogen. On the second anniversary of my diagnosis (Feb 3, 2007) I went skydiving with my husband (then fiance) in Lodi, CA. FANTASTIC! I'd do it again in a heartbeat. I recommend this - highly. No pun intended. Unbelieveable thing happened in March of 2007. Right after deciding that it was time to get married, he was diagnosed with testicular cancer. I know: no luck, right? Well, my Mark handled it like a champ. He went through 4 grueling cycles of chemotherapy. I am going to say it had to have been 4 times worse than mine. I went only once every two weeks - his regimen was 5 days in a row plus every Tuesday in a three week cycle. He was a wonderful patient. AND, he is keeping himself bald. He got so many compliments. He loves it. I do, too. I have to admit I feel like I am living a charmed life. I got married in 2007 to my best friend. That's what's been going on. Thank you for your care and prayers. I am sorry for the absence and lack of updates. You are so nice to think about me. Back to Christmas baking!

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.