On Beyond Cancer

My life with metastatic breast cancer

Running the store April 30, 2014

Filed under: Uncategorized — onbeyondcancer @ 8:05 am

The store manager of the boutique where I volunteer took Thursday off last week.  She asked me to come in anyway and open up the store.  I thought this was pretty funny because I’ve maybe done about 7 or 8 days of volunteering so far.  Most of the volunteers are nervous about using the computer, so the store manager is really happy that I am willing to help with the register, inventory, and insurance.  


I was by myself in the morning, so it was a very busy day.  I got the cash register set up and sold about $150 worth of chemo caps, jewelry, and little gift items.  I also handled an exchange, scheduled some appointments, helped a few ladies choose headscarves, and added some purses into the computer inventory.  Around 1PM the afternoon volunteer came in to do the “styling” – arranging the displays and making things look fancy.  I finally closed the store at 2:30PM because it was time for my monthly massage.  A great way to relax!


Mouthsores April 29, 2014

Filed under: Uncategorized — onbeyondcancer @ 9:26 pm

Well, the mouthsores have started getting bad.  I now have maybe 4 or 5 in different spots.  The worst ones are on the inner part of my upper and lower lip and inside my cheek near my bottom molars.  When eating started getting tricky, I called Dr. T’s office.  I spoke to her nurse practitioner, Maria, and she said it was definitely time to treat them.  I have been doing a baking soda and warm water mouth rinse as well oral lidocaine, but she suggested something called “Magic Mouthwash”.  I had heard of it before but this is the first time I’m trying it.  It’s a combination of 3 or 4 different ingredients and is often mixed at the pharmacy.  Mine has Benadryl, Maalox, something for pain, and something to treat the sores.  After Maria decided on the exact recipe she thought I should use, she called my pharmacist (an awesome guy named Frank) to see if he could mix it for me.  He had 3 of the 4 ingredients, so he special ordered one for me and mixed it up last night.  I have to swish with it 4 times a day as well as continue the baking soda rinses as often as possible.  I also took a pain pill yesterday and today which helped a lot.  Right now I’m eating mostly soup, milkshakes (with peanut butter for protein), and other soft things.  Hopefully the mouthwash will do its magic soon. 😉


Afinitor not affecting TMs yet April 26, 2014

Filed under: Uncategorized — onbeyondcancer @ 2:28 pm

My tumor marker is 136.  Two months ago is was 125, then last month after my surgery (where a large piece of tumor was removed), it dropped down to 109.  This wasn’t the result I was hoping for, but it may be just too soon to see the effect of Afinitor.  Whatever the numbers say, I’m still feeling better so I’ll take that as a positive sign.  My other blood work showed low white blood cells (which fight infection) and low hemoglobin and hematocrit (which can effect energy levels).  Nothing serious, just means I should pace myself a bit.


Doctor’s appointment April 23, 2014

Filed under: Uncategorized — onbeyondcancer @ 8:45 pm

I had my monthly appointment with Dr T today.  She got a copy of the genetic test results, so we reviewed them together.  We are still waiting for the recommendations from the team of 10 or so oncologists from the Cancer Institute of New Jersey.

My only side effect from the Afinitor has been mouth sores.  I typically have 1-3 at a time and each goes away on its own in about a week.  When they get painful I use a numbing gel and avoid acidic foods like tomatoes and citrus fruits.  Dr T said that since I am not having trouble eating we don’t need to reduce my dosage.

I got my Xgeva shot for my bones and also had blood work including a tumor marker.  Since I’ve started Afinitor about 5 weeks ago the bone pain in my left hip has gone away, so Dr T and I are both hopeful that we will see a change in my tumor marker.  I should know Friday.  Of course she said that it could still be too soon to see a change in the number.


Train trip April 22, 2014

Filed under: Uncategorized — onbeyondcancer @ 5:23 pm

The boys and I took a trip on Amtrak to visit my aunt, uncle, and cousins in Rhode Island during their spring break.  Train travel is easier for me than car or air because I have more leg room and can get up and move around, which is key to minimizing pain in my radiation damaged left hip/thigh.  I’ve traveled a few times to Virginia for work on Amtrak.  My sister and I also used to visit my dad in Maryland on Amtrak’s fast train the Acela when we were teenagers.


I wanted to have something to keep the kids busy on their time off and give Mike a break.  They were really well behaved and we had a great time.  I made the mistake of asking Mike to carry the luggage on for us and he got stuck on the train!  He had to get off at Newark airport and ride another train back to Metropark to pickup the car before it got towed from the temporary parking area.  It worked out OK in the end, but that was definitely not part of the plan.  It was also a bit tricky finding 3 seats together in coach, especially before we got to NYC, but a kind gentleman must have seen my look of despair and offered his two seats since he was getting off at the next stop.  A few minutes after that I was able to get Ethan a seat across the aisle from me and Ryan and we were set.  The boys enjoyed looking out the window, reading, and working on the activity sheets I printed out before we left.  On the way home we also went on an adventure to the cafe car (about 3 cars up) to get lunch.


Waiting at the station for their first train ride.

We had lots of fun with my aunt, uncle, and cousins in Rhode Island.  One of my cousins has a 3 yr old daughter and 2 yr old son, so the boys had kids to play with.  There was a birthday party for the 2 yr old while we were there.  We also went duckpin bowling, to a marine center with lots of touch tanks, and a children’s museum.

Ryan trying to "steer" the bowling ball.

Ryan trying to “steer” the bowling ball.


Ethan touching a shark at the marine center.

Ethan touching a shark at the marine center.


Playing in the construction area of the children's museum.

Playing in the construction area of the children’s museum.


Overall it was a great trip.  I didn’t get too tired, the kids had a blast, and Mike got a nice break.  I’m hoping to take a slightly longer trip this summer when the kids are off from school to visit my dad and friends in Virginia.


Afinitor delivery April 21, 2014

Filed under: Uncategorized — onbeyondcancer @ 2:55 pm

My current drug, Afinitor, is available only through a specialty pharmacy.  I have to call an 1-800 number to request a refill.  Then they ask how many pills I have left and give me a delivery date.  UPS brings the package and it is signature required.  The pharmacy rep told me that if did not want a signature required, I would be liable for the cost of the medicine, should it be lost or stolen.  A one month supply is $30,000, so I will happily wait for the UPS guy once a month.


Second genetic test results are in

Filed under: Uncategorized — onbeyondcancer @ 2:32 pm

Dr H gave me a call last week to let me know that the genetic tests on the tumor sample from my surgery in March were complete.  I have not yet seen the results or recommendations based on the results, but she gave me a quick overview on the phone.  The two mutations found in my previous sample were still there, plus two new mutations, for a total of 4.  Unfortunately, there are currently no treatments either FDA approved or on clinical trial for either of the new mutations.  While I am still glad I had the testing done, that was a big disappointment.  New drugs are always in development, so its possible a matching drug will be available in the future.  The testing also showed that the cancer cells from my liver were very different from my mastectomy sample, which I think indicates that the treatments I had four years ago worked well on most of the cancer cells and that the cancer has had work hard at changing to survive all the treatments.


Rest of blood work was good April 11, 2014

Filed under: Uncategorized — onbeyondcancer @ 12:41 pm

The doctor called yesterday to give me the rest of my blood work results, the metabolic panel and blood cultures.  Blood cultures were fine, so no infection.  My liver enzymes were mildly elevated which is nothing new.  My potassium was low, so I have to take potassium pills for a few days.  Everything else was fine.  So it looks like I just had a plain old regular virus last week.

Also, I’m excited that my mouth sores went away, at least for now.


Caught a bug April 8, 2014

Filed under: Uncategorized — onbeyondcancer @ 10:58 am
Tags: ,

It seems that last week I caught something that was going around.  I was really sleepy Wednesday and Friday, and on Friday I got chills so I call my doctor.  She had me come in just to check my vitals and run blood work.  I did have a fever by the time I got there, but my white blood cell count was fine and I was not anemic.  Having both a fever and low white blood cell count can be very dangerous; it means a neutropenic fever where your body can’t fight the infection on its own and requires hospitalization and IV antibiotics, so I was happy to hear that I didn’t have that problem.  She also ran a metabolic panel including liver and kidney function tests and did some blood cultures to check for infection.  This was late Friday afternoon, so I haven’t got the results of those yet.  I brought my hospital bag just in case, but I was able to go home Friday with antibiotics and instructions to get lots of rest and have some soup.  By Saturday night I felt quite a bit better and today I just have a lingering cough.