On Beyond Cancer

My life with metastatic breast cancer

Komen 3 Day: Please Support Cheryl September 30, 2012

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My good friend Cheryl is walking in the Komen 3 Day.  It’s a 3 day walk, 20 miles per day.  :-O Yes, it’s crazy.  Cheryl is walking for her mom, a breast cancer survivor, and also for me.

 

I’ve only known Cheryl 2 years, but it seems much longer.  We met when both of our sons were in the same preschool class.  Cheryl is always willing to help out.  She often watches Ryan for me so I can go to doctor’s appointments and takes him to story hour at the library when I’m working.  She picks up Ethan from school or camp.  And, when I’m having a tough week, she makes me a casserole or listens to me vent.  She is $500 short of her goal for the walk (she has already raised $1800).  Please consider supporting her or forwarding this along to someone who might be interested.

 

Support Cheryl Here

 

So proud of you Cheryl!!

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Had a tough morning – CT scan September 28, 2012

Filed under: Uncategorized — onbeyondcancer @ 10:08 pm
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Today I had a CT scan.  My last scan was only 6 weeks ago, but my doctor wanted me to have another one since I started chemo last week. I’ll have another one in 3 months and we’ll compare the two to see whether the Xeloda is working.

 

This time the technician suggested I drink about a quarter of the barium the night before.  That made things a little easier this morning.  There were two accidents and a road closed for construction, so we were a half hour late for the scan.  Luckily they took me anyway.  Must be my VIP status. 😉

 

I started having some side effects from the Xeloda – stomach problems, dry mouth, and dehydration – which may all be related.  I did try drinking lots of water, but it just wasn’t enough.  For the CT scan, I have to have an IV. They tried my hand first, which was very painful.   On the second stick, they got the IV on the inside of my wrist.   I had to have an IV once when I was a kid and they taped my forearm to a board for a week so that the IV wouldn’t fall out – ever since then I’ve had an issue with needles in my hand.  Also, the barium and the side effects from the Xeloda were not a good combo.  The point is, it was not a fun morning.

 

I took a long nap this afternoon and have been drinking lots of water and gatorade.  Mike and I went for a gelati tonight too because it just sounded good.

 

The doctor called about 5PM with the results.  Compared to six weeks ago, the cancer in my lungs has not changed and the bone has decreased in size.  That’s good news.  Unfortunately, there are two new liver lesions and the previous lesions have grown.  So it’s a mixed bag.  I’ll talk with the doctor more about it at my next visit, but I think this means that the Faslodex may be a possibility in the future, especially if I get the liver mets under control.  I’m also going to talk to her about making these scans more manageable.  Maybe I can try gatorade the day before so I don’t get so dehydrated.  Another patient told me that she takes a more concentrated version of the barium with lots of water, so I’m definitely going to look into that.

 

Heading to bed now to rest up.  Hope everyone has a great weekend.

 

A care package arrived for me today :-) September 26, 2012

Filed under: Uncategorized — onbeyondcancer @ 1:56 pm
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My friend Candi sent me this lovely little care package of spa goodies. I think she actually made them herself. Too bad this isn’t a scratch and sniff blog, because they smell wonderful. Thanks Candi! If you are reading this can you tell me what is in the tiny pot? I’m definitely taking a nice long bath tonight.

 

Got a great massage last Friday September 25, 2012

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With the new treatment plan, I forgot to mention that I had a great massage last Friday.  My in-laws, Jeff and Jolene, were kind enough to treat me to a massage at the spa where I went for my Diva Day.  It was supposed to be to help me recover from my Faslodex shots which were canceled at the last minute.  I had a different therapist this time who was also excellent.  I really enjoyed the hot towels and the aromatherapy eye pillow that she incorporated into the massage.  I also took advantage of the steam room and had a cup of tea in the lounge before going back to reality.  Thanks Mom and Dad!

 

I should also mention that I frequently come home from work to find that my mother-in-law has washed all my dirty dishes  and bought us groceries.  What a huge relief!  Without her we would probably have no food or clean plates. 🙂

 

Maybe socks like these.

In other news, our cat Neo is really enjoying the Bag Balm.  He must realize that it’s for animals too.  Maybe I ought to get him little cat socks so we can moisturize his paws.

 

Learning to pace myself September 24, 2012

Filed under: Uncategorized — onbeyondcancer @ 5:09 pm
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So today is day 5 of Xeloda, 9 more days for this “cycle”.  Still doing OK.  Today I am going to pick up a special cream called Bag Balm to put on my hands and feet at night.  Apparently, it’s original use was for cow udders.  Just lovely.   But if it does the trick then who cares right?

Blood test results from last week’s visit are in.  My tumor markers went up again another 50 points to 347.  Not really too surprising considering my symptoms.  I guess we can say that they are a decent predictor of what’s going on.  So that will be the baseline for Xeloda.  My potassium and liver function tests still look good.  Thanks to sudden menopause and not enough exercise, my weight is up 5 lbs since May.  Need to try to do a little exercise and a little less late night Edy’s chocolate peanut butter cup icecream. 🙂

 

My mom took the kids Friday night (thanks Mom!) so we had a nice dinner at a restaurant without crayons.  I slept 11 hours Friday night.  The kids had a fun time too.  With my burst of energy, I went wild removing wallpaper in the bathroom, went grocery shopping, dropped off a box of books for donation at the library.  Tonight I’m taking it slower.  I’m still learning to pace myself.  Scraper at the wallpaper was somehow very therapeutic…

 

Xeloda – OK so far September 20, 2012

Filed under: Uncategorized — onbeyondcancer @ 12:40 pm
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Thanks everyone for your comments yesterday.  I’ve taken 2 doses of Xeloda and so far, so good.  Last night I swallowed the pills and then left for the PTO meeting at school.  Life goes on.

The two week supply cost me $2.  The original retail price is over $4,300.  My insurance co-pay is $10 and I applied for a special discount card which gives me 80% off the co-pay.  I feel really lucky to have good health insurance, but that is just crazy.

The nurse gave me a little “goodie bag” from the pharmaceutical company with a pill case, mini-cookbook, lotion, and medication info.  It was the last one left, but unfortunately it was all in Spanish.  Even the pill case.  Luckily I can read the days of the week in Spanish…

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Ethan really liked the case and wanted to keep it to hold all of his “treasures.”  I gave him the zippered bag (also in Spanish) instead.  He had a few questions for me which I thought were very insightful for a 6 year old, but he seems OK with everything.  I told him that he could help me by reminding me to take my medication, which he has done a good job of so far.

 

Doctors appt today – on to chemo September 19, 2012

Filed under: Uncategorized — onbeyondcancer @ 2:42 pm
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Today was my monthly checkup with the oncologist.  Over the past few weeks my hip pain has been getting worse and radiating to my lower back and down my leg at times.  I’ve also been having more liver pain and some trouble catching my breath. Sleeping has been tough.  During the exam, my doctor found that there were “decreased breath sounds” from the lower right lung.

 

All of that together means that maybe the Faslodex hormone shots are just too slow right now.  It’s very possible that they may work, and we will probably try them again in the future, but for now I’m going to start an oral chemo called Xeloda.  I take 4 pills in the morning and 4 at night for two weeks, then take a one week break.  The most common side effects for this drug are upset stomach and something called “hand and foot syndrome” where the skin on your hands and feet gets red and irritated (do yourself a favor and do not do a google image search for that ;-)).  To prevent that, I have to use lots of heavy duty lotion.  Today I had a chemotherapy teaching session with the nurse practitioner where she reviewed the side effects, how to take the medicine, answered questions, and explained when I should call the doctor.  If the side effects get bad, they can lower the dosage or change the schedule to one week on, one week off.

 

On the positive side, I get to keep my hair.  This is really great since I just got some fabulous highlights.  Also the kids get a little worried seeing my bald.   I don’t need to be quite as paranoid about exposure to germs as with some of the other chemos.  There are also no “pre-medications” like steroids or anti-nausea pills that I have to take.  This is a good thing because they can sometimes cause more trouble than the chemo.  I do have Compazine and Zofran for nausea/vomiting and Immodium for diarrhea just in case.  Since the chemo is in a pill form, I don’t have to sit in the “healing room” with all the old people (no offense to old people) watching daytime TV to get infusions via my port-a-cath.  Also, this shouldn’t effect the trip to Florida or the two work trips I have planned over the next few months.

 

I’ll start the Xeloda tonight.  Next week I need to have another CT scan as a baseline.  I’m going to continue to have monthly checkups, bloodwork, and Xgeva shots.  I’ll also get bloodwork done after each 3 week cycle of the Xeloda, just to check my immune system functioning.  We’ll watch the tumor markers, scans, and my symptoms, but as long as the Xeloda keeps working, defined as things either getting better or not getting worse, I’ll keep taking it.

 

Thanks everyone for your love.  I just want you to know that I am OK.  I feel like Dory the fish on Finding Nemo, “Just keep swimming, just keep swimming…”.

 

I was interviewed for a news article last week September 17, 2012

Filed under: Uncategorized — onbeyondcancer @ 10:08 am
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My friend and co-worker, Dr. Shawna Hudson, recently did a research study on cancer survivors preferences regarding their follow-up cancer care.  It was an interview study with survivors of breast and prostate cancer.  You can read her original  article about the study for the Annals of Family Medicine, a primary care research journal.  This is an important issue because there are many side effects from treatment for cancer that need to be managed.  Also the number of cancer survivors in the US is increasing and oncologists will soon be unable to care for all of them long-term. When I finished treatment in 2010, my oncologist gave me a list of possible symptoms of recurrence; things like body aches, fever, headache –  all of which could have been caused by the flu, overdoing it at the gym, etc.  So it is a tricky balance for patients knowing when to call the oncologist and when to just take an Advil and quit your whining. 🙂

 

A reporter from an online wire service wrote a summary article about the study.  She wanted to get the patient’s perspective, so Shawna recommended me.  You can read the news article here that includes my input.  Just part of my career as an uncompensated cancer model/celebrity…

 

Stand Up to Cancer Telethon September 13, 2012

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Did anyone watch the Stand Up to Cancer Telethon last Friday?  If you did, how was it? 

 

About a year or so ago, we got rid of cable and switched to Hulu and Netflix to save money.  It has been great, except for special broadcasting like this telethon or the Olympics.  I know it will eventually be available on their website and it is also on Hulu now, so I might check it out.  Apparently, they’ve already raised $81 million.

 

I remember tuning in to the Jerry Lewis telethons as a kid.

 

I’m thinking that their Star Wars cancer t-shirts might make good gifts…

 

Not-so-boring medical ID bracelets September 11, 2012

Filed under: Uncategorized — onbeyondcancer @ 1:43 pm
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During my first cancer surgery all of the lymph nodes were removed from my left underarm area in order to check for cancer cells.  Lymph nodes are part of the circulatory system and they basically help fluid to get back to your heart and fight infection.  When you don’t have any in a certain part of your body, fluid can collect in that area and you are prone to infections.  So the bottom line is that since that surgery I have had to be extra careful with my left arm.  Sunburns, bruises, bug bites, and cuts all heal slowly.  Also I can’t get any shots or have blood pressure taken in that arm.

 

I wear a medical ID bracelet to remind myself, my sons, and healthcare workers that my left arm is off limits.  The typical medical ID bracelet is stainless steel with a small metal tag that has your medical information or a number that emergency workers can call to get your medical information.  It’s a very practical, but somewhat boring, piece of jewelry.

 

So I did some searching on the web and found out that there are lots of fun ones now.  Mine is still stainless steel, but it has “mood” beads that change color with body temperature and a little butterfly charm.  My sister-in-law Jennifer picked out this particular style for me as a birthday gift a few years ago.

She ordered it from a website called Creative Medical ID.  They have lots of other styles, some with pearls, swarovski crystals, leather bands, etc.  If you want to get really fancy, you can buy several bracelet pieces and swap them out to go with your outfit.  They also have kids and men’s styles.  They make the bracelets custom sized to your wrist, which is especially nice if you have a small wrist (like mine).  There are many other websites that offer similar items as well.  A few of my friends with medical conditions or allergies were interested, so I thought I’d share this on the blog.