On Beyond Cancer

My life with metastatic breast cancer

Navelbine next week, Paracenteses Monday July 30, 2014

Filed under: Uncategorized — onbeyondcancer @ 9:07 pm

At this week’s doctor’s visit my absolute neutrophil count (a ratio of one kind of white blood cell to another), was too low for chemo.  So I’ll start Navelbine next Wednesday.  I got started with the Fentanyl patch yesterday and it has helped with pain tremendously.

 

I talked Dr. T about getting a paracenteses, we have scheduled one for Monday.

Paracentesis is a procedure to take out fluid that has collected in the belly (peritoneal fluid). This fluid buildup is called ascites .   Ascites may be caused by infection, inflammation, an injury, or other conditions, such as cirrhosis or cancer. The fluid is taken out using a long, thin needle put through the belly. The fluid is sent to a lab and studied to find the cause of the fluid buildup. Paracentesis also may be done to take the fluid out to relieve belly pressure or pain in people with cancer or cirrhosis.

 

So I am hoping this procedure will make me more comfortable, decreasing the pressure on my abdomen.

 

Visiting nurses July 28, 2014

Filed under: Uncategorized — onbeyondcancer @ 6:46 pm
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Visiting nurses brought, so pretty.

Sorry I haven’t been blogging much lately.  Something to do with my rising liver enzymes made hard for me to get the words in my head onto the page.  It has improved quite a bit, no idea why.  As Mike told you earlier I signed up with visiting nurses, or also called palliative care.  These nurses are experts in things like pain management, home healthcare, and helping you get necessary equipment like canes, wheelchairs, etc.  They do home visits, help figure out what you might need or want, and report back to your doctor.   My visits will be one or two times a week.

I had an intro visit Sat so I could learn about the program and my first official visit with my Nurse Mary was today.  She took my vitals and checked on (my now) significant swelling in my abdomen and feet.  She explained possible treatments for my abdominal swelling using suction to remove it (done in the hospital).  If it becomes a recurring issue, you can have a permanent tube so that you could remove the fluid at home.

The most useful part of the visit was the pain management. So far, the strongest pain med I’ve been given has been percocet.  That might be because I have difficulty with uncontrolled vomiting with some meds.  I feel like the percocet is not enough now.  Mary suggested a patch called Fentanyl.  I would start with the lowest dose and patch stays on for 3 days, slowly releasing medicine during that time. This sounds like it could be a huge help.  I’m going to start anti nausea drugs at the same time so I get get ahead on that.

 

Karissa Update July 27, 2014

Filed under: Uncategorized — laziesthero @ 8:41 pm

  We went to the doctor again on Friday to get Karissa another round of IV fluids and blood tests.  After the infusion, Dr T spoke with us and explained that her calcium is back to normal, but there are some problems with her liver function tests.  She thinks her response to Carboplatin/Taxol was very short and that is probably no longer working.

 

  Next week, as long as her blood counts are ok, she will probably start a new chemo called Navelbine.  She is also planning on calling her doctor at Sloan Kettering to discuss trials she may be eligible for.  We also have a nurse service coming in at least once a week to check on Karissa and we can call them 24/7 for help.

 

  We have a lot of help coming next week to be around for Karissa and also to help keep the kids busy and happy.

 

High Calcium July 24, 2014

Filed under: Uncategorized — laziesthero @ 2:41 pm

Hi everyone, Mike here. Karissa is doing ok, but having some confusion so she asked me to keep everyone updated.

She had chemo as planned yesterday but woke up feeling extremely tired and slurring her words just a little. We figured it was fatigue, but Dr T called back saying she had high calcium in her blood. One of her shots yesterday lowers calcium, but takes a little time to kick in, so we went in today and they tested the blood again and then gave a 3 hour drip of IV fluids.

Her levels are more normal now, so hopefully she will start feeling better. I am bringing her back in tomorrow for another big bag of fluid. She has been in really good spirits through all of this.

 

No chemo today July 16, 2014

Filed under: Uncategorized — onbeyondcancer @ 6:20 pm

I did not get chemo today because my platelets (part of your blood responsible for clotting) were too low.  This is a common side effect of carboplatin and they were borderline last week, so I guess I shouldn’t be surprised. I have to take the week off and try again next week.  I asked, of course, but there was no shot or vitamin I could take to boost my platelets.  The nurse suggested that if it continued to be a problem, Dr T might change me from a 3 weeks on/ 1 week off to a 2 weeks on/ 1 week off schedule.  Just have to wait and see.  Since my chemo buddy and I already had babysitters, we went shopping instead.;)

 

Watch “Stronger | Seattle Childrens Hospital” on YouTube

Filed under: Uncategorized — onbeyondcancer @ 9:16 am

If you haven’t seen it yet, this is a cute music video of Kelly Clarkson’s “Stronger” by the cancer patients and nurses at the Seattle Childrens Hospital.

Stronger | Seattle Childrens Hospital: http://youtu.be/ihGCj5mfCk8

 

Fainting spells July 15, 2014

Filed under: Uncategorized — onbeyondcancer @ 6:00 pm
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Unfortunately, I was far less glamourous.

Last week I had three near-fainting episodes.  After the third one, where I almost passed out in the checkout line of a store and had to call my husband to drive me home (thanks Craig for helping us get my car home), I called my doctor.  She suspected my blood pressure had dropped too low, but I had to have a brain MRI to rule out mets.  My brain is fine.  I’ve stopped my blood pressure medicine and also my morning dose of Neurontin and I seem to be fine now.  I hate that every time I have an odd symptom I have to get a brain scan.  This time I was able to use special goggles to watch TV during the scan.  Waiting for the results is killer, especially over a weekend, but luckily Dr T called just a few hours later to tell me everything was OK.

 

Eating well July 12, 2014

Filed under: Uncategorized — onbeyondcancer @ 10:36 am
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This last month has been a tough one, and I’m really thankful to all of you for your positive messages, help with the kids, chemo buddies, and all the other things you do to take care of our whole family.  Lately though, lots of people have been feeding us, which has just been wonderful.  I’ve got a few photos of the yummy food we received:

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Farmers market care package from my dad and stepmom. Potatoes, tomatoes, zucchini, cherries, raspberries, peppers, peaches.

 

Baked potatoes and all the fixin's  from my friend Cheryl's mom, Maryann.  She is an amazing woman and had herself surgery only a month ago!

Baked potatoes and all the fixin’s from my friend Cheryl’s mom, Maryann. She is an amazing woman and had surgery herself only a month ago!

 

Platanos maduros (grilled plaintains) and corn tamales made by my cousin Marie.  Food was delicious but the best part was a great visit with her and her sister Sandy!

Platanos maduros (grilled plaintains – my fav) and corn tamales made by my cousin Marie. Food was delicious but the best part was a great visit with her and my cousin Sandy!

 

Rice and beans also made by my cousin Marie.

Rice and beans also made by my cousin Marie.

 

I don’t have pictures but my mom brought me casseroles, orange juice, and her famous macaroni salad.  My mother-in-law and father-in-law often invite us for swimming and dinner.  I put the kids in their pj’s and brush their teeth before we leave, then we get home and pop them into bed, so easy.  Also, my friend Cheryl made us a lovely pasta dinner this week.  Thanks to everyone, you are so fantastic.  It’s also a special treat to try new dishes!

 

Wednesday’s doctor appointment July 11, 2014

Filed under: Uncategorized — onbeyondcancer @ 8:00 am
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I had an appointment with Dr. T before my chemo infusion on Wednesday.  My awesome friend (and former coworker) Pam was kind enough to accompany me and also hangout while I slept for an hour from my Benadryl induced nap.

 

My main issue to talk with Dr. T about was the neuropathy.  I have been taking Neurontin which has been helping quite a bit.  Dr. T called me last week and told me to increase my dose to two 300 mg pills a day, but the morning dose made me far too sleepy – I was like a zombie all day long.  Now I’m on the 300 mg dose at night and 100 mg in the morning which is working much better.  In light of the neuropathy happening so quickly, we talked about possible treatment changes.  I told her that I’d really like to stick with this combo since it’s definitely working.  My dose of Taxol is so low that it isn’t possible to lower it further.  So if the neuropathy gets worse I have two options: drop the Taxol and keep taking the Carboplatin OR switch out Taxol for a similar drug called Taxotere and keep taking the Carboplatin.  Taxotere is less likely to cause neuropathy than Taxol, but instead has a risk for pulmonary edema (blood clot in the lung) which is prevented by taking steroid pills the day before and steroid via IV the day of the infusion.   You all know how much I hate steroids, so I wasn’t super excited about that idea.  I did have Taxotere five years ago as part of my curative (pre-stage IV) chemo regimen. Dr. T also said that Taxotere is used weekly with Carboplatin by some other oncologists in her practice, but it’s not a well tested combo.  So anyway, I’ll keep those options in mind if I need them later.

 

I also stared acupuncture about two weeks ago.  I’m being treated for neuropathy as well as immune system function, liver function, general stress, and the muscle pain from radiation damage to my left hip.  I’ve already felt an improvement in the muscles.  It’s hard to know if the Neurontin or acupuncture is helping with neuropathy, but worse case I take a 30 min nap in a quiet room, right?  I was treated by this acupuncturist about 10 years ago for tension headaches and I never get them anymore, so I’m hopeful this will help with at least some of my issues.

 

Chemo today July 9, 2014

Filed under: Uncategorized — onbeyondcancer @ 1:51 pm

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At chemo today with my friend Pam.