LIVESTRONG:

What started as IDC (Infiltrating Ductal Carcinoma) in 2011, then turned into CHF (Congestive Heart Failure) in 2013, probably partially caused by chemotherapy along with a genetic pre-disposition. Here we are now in March 2016 and I am newly diagnosed with Stage IV breast cancer in the left breast and liver (LMBC - liver metastasized breast cancer).


So the focus has shifted yet again, BUT... I continue to THANK YOU for your prayers, love & support. I receive them with open & loving arms. My wish is that I will gain strength from you, will provide helpful information and strength to others & will help to strip away the fears we each experience.


I am strong. I am loved. I am healthy. I WILL SURVIVE!

Have you or your loved one had their annual mammogram? PLEASE, don't put it off. Speaking from experience, I highly recommend monthly self exam as well. And if you are now cancer free of breast cancer, do everything you can to insist that your doctors follow up with an occasional PET Scan and labs for tumor markers.

WARNING:
Contents may be uplifting, sad, funny, scary, downright depressing ~ THAT IS CANCER .... at it's best, at its worst.

PLEASE ~ Feel free to share this blog with anyone who is interested to learn about my journey. While I welcome their support, I hope that by sharing this experience freely to the universe I may help to support others by breaking down some of the barriers and fear associated with breast cancer and the treatment.

*****************************************************************************************

Tuesday, March 29, 2016

And Today Continues on the "Positive" Side of the Meter

Our drive into San Francisco was beautiful this morning. Traffic was not too bad. We allowed 2 full hours and had about 20-25 minutes to spare to get settled and use the restroom. Alura arrived just seconds before us too.

We had barely entered the reception room when Vickie, a SVHS Classmate, called over and said hello. We met once before at the Round Barn Cancer Center about 4-5 years ago, when she was accompanying her friend to treatment, as she was doing today too. Her friend is LMBC too (Liver Metastasized Breast Cancer). We had a moment to chat briefly.

We were taken back to a room pretty promptly, and they took my vitals down. Then one of UCSF Hospital Fellowes came in and introduced herself. She was to do a full review of my case, update it with anything new, then report to Dr. Michelle Milesko right before she comes in to consult with us. And it pretty much went that way. There were a few nuances of things that took place over this past year that I shared with her. Then I'd say they each spent nearly an hour with us; and the Fellowe took notes for us while we met with Dr. Milesko. I also recorded the session on my phone.

Basically, we learned we are on the best path right now with everything we have in place and are considering going forward. This is pretty much what I expected to hear, and it was very reassuring. We also learned of some other options that might present them to me down the road; and that is helpful and hopeful.

Here is a brief summary:
  1. If I experience significant side effects that are intolerable or there is progression to the disease, there are other chemo regimes, including taxol, that can be used.
  2. We'll be doing a CT Scan after 2 chemo chcles (6 weeks) of carboplatin/gemcitabine. If the liver responds and/or breast, then we would continue this cocktail for possible 4-6 total cycles.
  3. Based upon my response to chemo, I could consider palbociclib and fulvestrant. Timing would depend upon response to chemo. And keep in touch with UCSF since other clinical trials using other cyclin dependent kinase inhibitors or MTOR inhibitors may be an option in future.
  4. Immunotherapy has a slow response rate in BC and since this is growing quickly, we would hold off on this now. Maybe an option for the future.
  5. You will be on lifelong treatment with different combinations of chemo or hormonal therapy.
  6. Any questions, please contact us.
So no real surprises; just new names of medicines we hadn't heard before. And then we found a sweet deli across the street from the hospital to debrief and get some lunch. 




Yay, we're done. Let's get some lunch!


We were home by 2:30pm and I have been relaxing and catching naps since then. 

Hoping for less brain fog tomorrow; but really, this is much more doable than last week. And I have all next week off too, so should have time to hopefully kick back a little, maybe take a walk, who knows. Time will tell...

Another Good Day!

THANK YOU for continuing to keep me in your thoughts and prayers.

Life is Good... SOMETIMES

Debbie... aka the cancer FIGHTER, no longer a SURVIVOR, 
AND a Cardiomyopathy warrior!!!
LIVESTRONG

• I AM STRONG • I AM HEALTHY • I AM LOVED •
THANKS for visiting! Comments are good. I look forward to your comments.
 

Another Good Day in the Neighborhood...

Yes indeed it is. I woke this morning still very groggy, so to speak, but feeling more like I can listen and comprehend; at least a bit. Oh; and enough energy to walk around a hospital would help. I'll be slow, but we can do this.

So I keep racking up the good days, and that makes me happy. 

Off we go today to UCSF Hellen Diller Cancer Center for a second opinion/consult with Dr. Michelle Melisko. I think that between Mark, Alura and I, we will get the necessary questions answered and hopefully learn about other options, or things down the road that are about to be available for use. I can hope, right? But either way, I am excited for this opportunity in my future treatment.

Stay tuned...


Another day in the right direction!

THANK YOU for continuing to keep me in your thoughts and prayers.

Life is Good... SOMETIMES

Debbie... aka the cancer FIGHTER, no longer a SURVIVOR, 
AND a Cardiomyopathy warrior!!!
LIVESTRONG

• I AM STRONG • I AM HEALTHY • I AM LOVED •
THANKS for visiting! Comments are good. I look forward to your comments.
 

Sunday, March 27, 2016

Feeling Better About This Infusion Cycle... So Far

And that is because I'm feeling decent still. By this day last week, I felt as though I was gonna die; no kidding. This morning I awoke at 5am feeling a bit foggy headed, fatigue, but so much better. I have a low grade fever, but only mid-high 99+; as compared to spiking up to 102 last week this morning. 

You may recall that this last infusion only contained the one drug Gemcitabin (aka Gemzar). And my Oncologist was hopeful that this would be easier on me. He also indicated that the next round in two weeks of the two-drug cocktail, Gemcitabin (aka Gemzar) & Carboplatin (aka Paraplatin), may be easier too now that my body has an idea of what to expect. Time will tell.

As the day progressed it was a relief to find I could spend all day in the recliner; rather than laid out in bed like last Sunday.  Although obvious that I would not do much more -- It was a recline and sleep kind of day. My brain was a total fog and I really couldn't function. The breast pain didn't happen this time either, thankfully; and nausea was minimal. I'LL TAKE IT!

But meanwhile we got in a lovely family day yesterday as pre-Easter and Celebrating Sarah's 40th Birthday. Wow! How can that be??? 


I'll take anything positive I can get!

THANK YOU for continuing to keep me in your thoughts and prayers.

Life is Good... SOMETIMES

Debbie... aka the cancer FIGHTER, no longer a SURVIVOR, 
AND a Cardiomyopathy warrior!!!
LIVESTRONG

• I AM STRONG • I AM HEALTHY • I AM LOVED •
THANKS for visiting! Comments are good. I look forward to your comments.
 

Family Filled Day of Love and Laughter

Today, Saturday, March 26th, we are celebrating Easter and Sarah's 40th Birthday. I know... it is a day early for both, you say. But typically my Sunday is very bad after a Friday Chemo Infusion, or so it was last week. It later started as an okay day, but we couldn't take the chance so celebrated on Saturday.

We started by meeting both the girls and families at 10:00 am at Dunbar Elementary School for the Annual Egg Hunt put on by Glen Ellen Fire Protection District. It was a gorgeous morning and we had a lot of fun. Nico, Gaige & Madeleine all found their share of eggs and then had fun playing on the play equipment for a bit. It was so great to see so many Glen Ellen faces, especially from the Fire Department, and friends from Sonoma too. The crowd was a perfect size, too.


I think we all found five each.







So I was pretty fatigued after the egg hunt and feeling very thirsty that whole morning, unlike usual. So getting home around noon was perfect. And Nico was a huge help with feeding the alpacas. Look how grown up he is getting. And he tells you right away he is 4.5! So cute.


And then we got some help around the farm.

Mark prepared a wonderful early dinner for us all; pork chops, applesauce, grilled asparagus and two flavors of ravioli. It was just so deliciouso. He is a great cook and loves to prepare for the girls and their families. I was only sorry that Stephan couldn't join us, but I'm glad he stayed home with cough, he missed out on some yummy chops, though.  Just saying...

And Chris took off outside with the Weedeater and did some clean up in the yard. I am so Thankful for my family.

After some yummy Scandia Princess Cake to celebrate Sarah, it was play outside on the stomp rocket, look at the cute alpacas while they look at us as the curiosity. Or was it the bunny? 

And then it was time to pack everyone off home and collapse.



Love my family!

THANK YOU for continuing to keep me in your thoughts and prayers.

Life is Good... SOMETIMES

Debbie... aka the cancer FIGHTER, no longer a SURVIVOR, 
AND a Cardiomyopathy warrior!!!
LIVESTRONG

• I AM STRONG • I AM HEALTHY • I AM LOVED •
THANKS for visiting! Comments are good. I look forward to your comments.
 

Friday, March 25, 2016

So Far So Good on Second Chemo; but Jury Still Out

Today went well during my second chemotherapy infusion.  I had a single drug,  Carboplatin (aka Paraplatin - an alkylating agent

It is always a joy to spend time with my daughters, and my chemo partner for the last two infusions has been Sarah. How can you go wrong with chemo, Target for Easter goodies, and Cannibas shopping? And so much thanks to Gaige's Nana for taking him today so she could be there with me.

First we stopped at Target for me so I could get a few goodies for the Grand Kids. Man that was hard, I held onto and leaned on that cart for sure. It was my walker for the excursion. We didn't stay long but found some fun stuff.

Yesterday I had to go in alone and it was so overwhelming. Today, their Notary was in so Sarah is now my Certified Care Giver, which means she can go into the product room with me and even pick up things if I am not able to. Because I referred her, I got a coupon good for a free Rice Krispy bar, which I didn't pass up.

Yesterday at the Medicial Marijuana store, we purchased a chocolate bar of 50/50 CBD and THC. The flavor was overly strong for me and I think the THC was too much. I didn't like the taste in my mouth or the way my head felt. But the tincture we got 18/1 CBD/THC, was much better. The spray nozzle seemed to be malfunctioning and they professionally swapped it out for a new one. That was great to know.

So today we looked at teas, candy stars, honey. I skipped the tea thinking I can use the home in my own tea, and bought some hot cinnamon and watermelon candies. You never know, they may be the trick again.





But his day isn't  usually a bad experience in my chemo cycle. It just brings a very foggy feeling. Then tomorrow the steroids wtill still be on board and it is usually another good day. I sure hope so because we plan to celebrate Sarah's 40th Birthday & Easter, both a day early, since it is Sunday that I'm very anxious about. Hopefully it won't be as bad as a week ago. 

I do have to relish in the fact that it was a gorgeous afternoon out and about Bennett Valley and Santa Rosa. We couldn't have asked for more Spring Beauty. So for this I am very thankful.

Now I am home and will put my feet up and recoup for tomorrow.


THANK YOU for continuing to keep me in your thoughts and prayers.

Life is Good... SOMETIMES

Debbie... aka the cancer FIGHTER, no longer a SURVIVOR, 
AND a Cardiomyopathy warrior!!!
LIVESTRONG

• I AM STRONG • I AM HEALTHY • I AM LOVED •
THANKS for visiting! Comments are good. I look forward to your comments.
 

Absolute Worst Chemo Week Ever!!!!

 But there was a bright light at the beginning of the tunnel, which I'll share first...

First chemo went smashingly well on Friday, March 18th. Sneaky sun of a gun.

The following day we attended a beautiful Celebration of Life for dear friend and cousin, Denise Emery.  -- We called each other sisters-in-law, since our husbands grew up almost like brothers. We came home with both daughters and all their families, and Christopher was so wonderful to take family photos of us all out on the deck. I knew I might be losing my hair, and wanted to beat it to the punch. We haven't really done this, except for wedding photos, and I never seem to get the exact combination of immediate family when we do. Got some fabulous ones. Here is just a tidbit I stole from Christopher's contact sheet, so it doesn't quite show the beauty of his work. Man, those littles are hard to contain at the same time.


My wonderful family

Then a lovely dinner here with everyone and Sarah and Chris off to their nearby home and Barsuns to do a sleepover. Everything was peace, and quiet, and innocence.



WATCH OUT - THE HURRICANE HAS ARRIVED.

The next morning, Sunday, I could hardly lift my head from the pillow, needed assistance walking anywhere, could barely speak, could not eat or drink, AND FELT LIKE SHIT. And I was spiking a fever. I could not get out of bed except to the bathroom. IT WAS HORRIBLE. Like nothing I expected, or experienced during my chemo regime 5 years ago. But this is a new cancer, and these are new drugs to kill the cancer.

Of course we called the doctor and I was taking all the meds the sent me home with after Chemo. I was to start an antibiotic in case of infection and we would see if Tylemol would control the temp, which spiked from 99+ to 104. I know this doesn't sound bad, but with chemo, they watch for anything over 100.5

Then the next few days goes like this, 3 bowls and towels placed strategically around the house, ginger ale and soda crackers, thermometers, rarely leaving my bed, etc. I think this paints a good picture. Let's just say, or perhaps I already did, but it was REALLY BAD.
  • Monday wasn't much better.
  • Tuesday the bowls came out, but I could lift my head and navigate to the bathroom on my own -- walls are very helpful.
  • Wednesday it felt like I might survive, but still very nauseas, fever up and down, hard to drink or eat anything, Tylenol and then more. But the end seemed to be in sight. And we drove into Oncology for labs so they could see how everything was - a little anemic, but white & platelets all within normal range.
Then Thursday I woke, and vomitted again. My stomache hurt, fever, I felt worse. I cried and told Mark I didn't think I could do this. But the Good Lord, the stars above, my guardian angels, you name it, I survived again. We had my pre-chemo appointment with my oncologist. I dreaded it. I didn't know how I could attempt Friday's chemo and didn't want to disappoint him or my family.. 

But we did get some good news and answers from Dr. Anderson, and I felt hopeful.

The most important:  The good news from my Oncologist-- today's  treatment shouldn't be as bad hopefully, and now I have my new MM to help me get through it if. It takes me a while to get ready these days and chemo infusion is early this afternoon.

For those for who have suggested beads and spikes, or some such thing for the liver, I'm not a candidate. At least not yet. My cancer is too spread out in the liver and those are for something more localized. So if we can knock this thing, and there is a pesky one, or few fighting to the end, we can consider this treatment.

The single drug in my chemo tomorrow, one from the cocktail from last week, hopefully won't be as hard on me. And now that my body has experienced the two drug cocktail, hopefully the next repeat of it next month will be easier.

We discussed much more, including what if I wasn't up to my UCSF appointment, since this Tuesday was not one I would have wanted to drive to SF, so a repeat next week had me frightened, and just a bunch of stuff.

Each time we have met with my Oncologist, he has mentioned medical marijuana as an option. Today, I jumped at it. I am now a prescription member of that club. Wow, what an experience.

The place in Santa Rosa was quite impressive. 😃 It almost felt like you were in a Macy's or high end cosmetic department, mainly because of the counters and such, but dark lighting... REALLY. Most sales people appeared to be  young hip people with rings here and piercings there. But a very upscale place, AND security everywhere‼️‼️




Yippee, it's working. I am so thankful! I was at my wits end. It was just almost unbearable you guys. And Mark can tell you I can dig deep and take a lot. So anything that will help me I am so glad to try. So we chose a chocolate bar & a tincture.



THANK YOU for continuing to keep me in your thoughts and prayers.

Life is Good... SOMETIMES

Debbie... aka the cancer FIGHTER, no longer a SURVIVOR, 
AND a Cardiomyopathy warrior!!!
LIVESTRONG

• I AM STRONG • I AM HEALTHY • I AM LOVED •
THANKS for visiting! Comments are good. I look forward to your comments.

Friday, March 18, 2016

The Busy Week Ended On a Positive Note ~ Frist Chemo Infusion Complete

As a preview, we had appointments all but Thursday this week:

It is 11:30 pm on the night of my first chemotherapy infusion under the new diagnosis of LMBC (Liver Metastasized Breast Cancer), and everything went smashing well, if that is even possible. At least at this moment in time it seems so. But my eyes are WIDE OPEN, with no hint of sleep. I did get a bit groggy the last couple of miles on the drive home from the infusion, and then fell into a deep sleep for about an hour at 5pm. But what is really the culprit are the steroids they administer during the infusion.

My appointment was at 1:30pm and Sarah was my driver and partner in crime. We said it was as if we were sneaking off for a girls spa day. Well, not quite. But we can dream, can't we. :-) 

My nurse, Tim, was a sweetheart. As he was getting me settled into my chair, an old friend from my first diagnosis in 2011, who has also been a friend and supporter all along since that time via Relay For Life Sonoma and Facebook, and is a St. Joseph Oncology Nurse, Jill Guidry, came by and gave me a hug and we chatted for a moment. That was so wonderful and heartwarming. 

Tim reviewed the drugs he would be infusing today and had me sign off on a release. I got copies of descriptions of the two drugs: Gemcitabin (aka Gemzar - an antimetabolite) & Carboplatin (aka Paraplatin - an alkylating agent) and a long list of possible side effects and how to deal with them.

In addition, the infusion was started off with Dexamethasone (a steroid, used primarily in my case to prevent nausea and vomiting) and Zofran (aka Ondansetron, also used to prevent nausea and vomiting). I also have Ondansetron in pill form as one of my anti-nausea drugs I am to take for two days following infusion.

In order to understand antimetabolites and how they work, it is necessary to briefly discuss the processes that are being targeted by these agents. The term metabolism refers to the many chemical reactions that take place in our bodies. We are constantly breaking down food into usable components and using those components to build our proteins, DNA and other cellular structures. Metabolite is a general term for the organic compounds that are synthesized, recycled, or broken down in cells. Materials that provide us with key metabolites enter our body as food. These compounds can be broken down into simpler structures that can be re-used in our cells. Examples include vitamins and amino acids. Metabolites that are the end products of a process or pathway may be excreted by the body. An example is urea, the end product of protein metabolism, excreted by the body as a component of urine.

Antimetabolites are structurally similar to metabolites, but they cannot be used by the body in a productive manner. In the cell, antimetabolites are mistaken for the metabolites they resemble, and are processed in the cell in a manner analogous to the normal compounds. The presence of the 'decoy' antimetabolites prevents the cells from carrying out vital functions and the cells are unable to grow and survive. Many of the antimetabolites used in the treatment of cancer interfere with the production of the nucleic acids, RNA and DNA.(1) If new DNA cannot be made, cells are unable to divide.

Carboplatin

Usage: Carboplatin (Paraplatin®) is an alkylating agent used to treat a variety of cancers. Malignancies for which carboplatin is used include: Ovarian cancer, Germ cell tumors, Head and neck cancer, Small cell and non-small cell lung cancer, Bladder cancer, Relapsed and refractory (resistant to ordinary treatment) acute leukemia, endometrial cancer. Carboplatin is usually administered intravenously.

Mechanism: Carboplatin creates fragmented DNA, prevents DNA synthesis via cross-linking of DNA, and creates mutations in nucleotides.
Considering the three hour infusion time for the pre-drugs, and the two cancer drugs, we were out of there at 4:00 pm, so the expected 3 hour visit, only lasted 2.5 hours. Next week I will only get infused with Gemzar, so my session is expected to last 2 hours. Perhaps it will go faster as well.

During today's infusion, I felt a bit fuzzy headed, but nothing more really. Sarah and I were able to visit quietly, which was absolutely wonderful. She helped to get me scheduled for next week and for the next cycle of infusions in April. So all went very well. Sarah also got to meet our new car and chauffeur me home in it too. We nibbled on Biscotti for a snack during the drive. She stayed for just a moment and then scooted off to pick up her little guy at Nana's house.

We get the pleasure to spend time with both our daughters and their families tomorrow, and have the Barsun's for a sleepover, finally. We had to postpone the last two due to my new diagnosis and not feeling very well, and then the big storm last weekend.


All the necessary supplies; ipad, knitting, water, medication lists, and my sweet Sarah visiting and taking the photo.


Please continue to keep me in your thoughts and prayers.

Life is Good... SOMETIMES

Debbie... aka the cancer FIGHTER, no longer a SURVIVOR, 
AND a Cardiomyopathy warrior!!!
LIVESTRONG

• I AM STRONG • I AM HEALTHY • I AM LOVED •
THANKS for visiting! Comments are good. I look forward to your comments.

Wednesday, March 16, 2016

Pre-Chemo Oncology Appointment

What do you call those times when you start a new program, break out into a new plan or regime? Well this is that week. Appointment upon appointment upon call upon.... My brain is about to explode with information. But we are taking time to throw some fun diversions in there too. AND, Mark got are tax information off to the accountant. So all is good for the moment.

I have a new acronym to use:  LMBC - liver metastasized breast cancer. That is me!

The pre-chemo oncology appointment was on Wednesday. All went well in our meeting at the St. Joseph Fountaingrove Cancer Center with Dr. Ian Anderson. Our drive through Bennett Valley for the third day this week was just so beautiful again. After a week of 10" of rain, we've been having beautifully sunny days, even up into the low 70's, and everything is a magical green. 

Mark was much more at ease in their office, thank goodness; and he was amused at the age of some of the magazines in the waiting room. It's as if people bring in there very old Simple Life, Martha Stewart and Oprah magazines and leave them there. But I did notice him taking pics of recipes and ideas for future.

I started out with a blood draw -- YIKES -- five vials! But apparently one of theme was used to flush the IV. They were running way behind and after 1.25 hours, we were taken back to see Dr. Anderson. This is the new norm of our lives, so we just roll with it.

Dr. Anderson reviewed the meds I will be taking after chemo to help with nausea. There is one I take for sure for two days following chemo (Ondansetron), then two others I have, just in case I need something after those two days (Prochlorperazine & Lorazepam.

My chemo regime will start out with a cocktail of two drugs together (Gemcitabin & Carboplatin) Then later on they may also use Dexamethasone and/or Taxol. I will have one infusion each week for two weeks in a row and the third week there is no infusion. After two cycles (6 weeks)they will do a new Pet Scan and labs for tumor markers to see how all this is working. Chemo will most likely cause nausea, but I have all sorts of options here to help with that (see above).  And problems with platelets is pretty common. So before the next infusion, the labs will check for that and I may need a Neulasta shot. Neulasta will help to correct the dip in my blood count, but might cause bone pain. And this is where some claritin might help. One thing leads to another in this game of chemo infusion.

Dr. Anderson reported some new information gleaned with his conversation with Dr. Melisko of UCSF. Apparently I may still qualify for a clinical trial, if there are any for my specific cancer, since my heart EF is at 40%. That is wonderful news to hear. And Dr. Melisko feels that our plan of attack so far is very appropriate for me to start with. She will be reviewing all my information and scans and we'll talk more on the 29th. And I may be meeting with one of the UCSF Fellowes first and then Dr. Melisko. My job now is to go over all the links UCSF sent to me and come up with a comprehensive list of questions for that appointment.
 
We ended off Wednesday's trip into Santa Rosa with a lovely meal at Rosso Pizzeria, one of our favorite places.

Then we took Thursday off cancer, if that is possible. And we took our "new to us" Honda CRV for a drive to the coast on what turned out to be a beautiful gorgeous sunny day.


SRJC drive-by & lunch at Rosso Pizzeria

St. Paddy's Day fun at Doran Beach State Park on a gorgeous day

For now, I just must tolerate the chemo infusion tomorrow to knock the cancer down in its tracks. And thankfully, for now my liver is functioning normally according to blood work. 


Please continue to keep me in your thoughts and prayers.

Life is Good... SOMETIMES

Debbie... aka the cancer FIGHTER, no longer a SURVIVOR, 
AND a Cardiomyopathy warrior!!!
LIVESTRONG

• I AM STRONG • I AM HEALTHY • I AM LOVED •
THANKS for visiting! Comments are good. I look forward to your comments.

Tuesday, March 15, 2016

Second Power Port in Place

I am now the proud wearer of a brand spanking new Power Port.  A similar device I had implanted almost five years ago exactly, and then removed one year later so excited to be through with, and "cured" of, cancer.

I wonder if the grandsons will be impressed. 😉


Thank you to Dr. Cacavalle (sp), his techs and nurses, Jennifer, Jacob, and Brian, and all the wonderful nurses in pre- and post-op, who attended to me. It was a very pleasant experience and I can't speak highly enough about St. Joseph's Hospital (Memorial) and all the staff we encountered today. They even found my vein in one try, and that is uncommon for me. But now with my Super Duper Power Port, that is all behind me. 




A little ginger ale at 1 pm after fasting since midnight last night.




I was excited to return home to a call and email from UCSF explaining some of their wonderful services I needed to look into, which I will share in an upcoming post.

Then it was off to lala land as the "twilight" drug they use for this procedure gave me just enough time for some much anticipated lunch and then a good 2+ hour nap. Now I am nearing bed time and the breast is giving me more pain than the port area.

Tomorrow I see my Oncologist Dr. Ian Anderson for the pre-chemo visit. The first chemotherapy infusion follows two days later.


Please continue to keep me in your thoughts and prayers.

Life is Good... Most of the time

Debbie... aka the cancer & cardiomyopathy FIGHTER!!!
LIVESTRONG

• I AM STRONG • I AM HEALTHY • I AM LOVED •
THANKS for visiting! Comments are good. I look forward to your comments.

Lots of Resources from UCSF

Later in the day on Tuesday, March 15th, I received a call from April of UCSF. She reviewed a service that they offered where one of their representatives will sit in on a patient's appointment and takes notes, as well as record the meeting. I was offered this service and am now on a wait list. I hope it works out. My appointment is on March 29th.

She then sent me to a weblink for a private online survey to get all my basic information into their system, which I have completed. In addition, a followup email arrived a short time later. The amount of information contained in this email, and all the web links, are a bit overwhelming. For now I have set it aside and will go back to it next week to make headway. But one of the links I am in the process of watching is a slideshow to educate patients all about UCSF, their different campuses, parking, etc. I imagine the rest of it will be just as helpful once I get there.

The following summarizes most of the information contained in April's email which might be appropriate to others:

• Carol Franc Buck Breast Care Center http://cancer.ucsf.edu/breastcarecenter/treatment/metastatic_breastcancer

• Healthwise® Knowledgebase Breast Cancer Metastatic or Recurrent: Topic Overview

• Living Beyond Breast Cancer www.livingbeyondbreastcancer.com/Audiences/Living-with-Metastatic-Breast-Cancer Offers news on advanced disease, treatments and updates on clinical trials.

SMARTPHONE APPS
These links point to places where you can make your own question-lists and staff record your appointments
• Cancer.Net: www.cancer.net/multimedia/mobile-applications 
This free app is available for iPhone, iPad, and Android phones. It provides detailed educational information for many cancers and offers a long list of sample questions organized by type of doctor. Breast cancer specific questions can be searched for. Information about medications and symptoms can be stored on the app. The app does not create audio-recordings.
• Pocket Cancer Care Guide: www.canceradvocacy.org/resources/pocket-care-guide/ 
By National Coalition for Cancer Survivorship. Free iPhone app to build a list of questions, links the questions to the appointment in your calendar and allows you to staff record the answers. Offers questions to choose from, a glossary of terms, and allows you to create your own questions.
• Appointment Buddy: www.appointmentbuddyapp.com 
This free iPhone app allows you to staff record audio, take pictures, and write notes for your appointments. No need to register; simply download the app and begin organizing appointments. Recordings, notes, and pictures can be emailed to others in compressed files. The app does not help build question lists.
• HerStory Free downloadable app (iPhone or Android) that virtually connects women with breast cancer to women like themselves. You can choose to listen to stories or contribute your story. Stories are organized by topic such as Surgery & Recovery, Reconstruction or not, and Emotional support. http://www.22otters.com/herstory.html
• Smart Voice Recorder: https://play.google.com/store/apps/details?id=com.andrwq.recorder&hl=en 
This Android app allows you to staff record appointments easily and share via email. Easy to use interface but only creates *.wav files which means the files can be quite large for longer appointments.
• Super Voice Recorder: https://play.google.com/store/apps/details?id=com.enlightment.voicerecorder 
This Android app is not as sophisticated as others, but creates mp3 files and shares them easily.


I hope some of this information is helpful to others. This is just a small portion of resources provided. I omitted anything which appeared to be specific to patients of UCSF.



Please continue to keep me in your thoughts and prayers.

Life is Good... Most of the time

Debbie... aka the cancer & cardiomyopathy FIGHTER!!!
LIVESTRONG

• I AM STRONG • I AM HEALTHY • I AM LOVED •
THANKS for visiting! Comments are good. I look forward to your comments.

Monday, March 14, 2016

Echo Unchanged

The outing Tuesday through beautiful Bennett Valley on these gorgeous sunny days we're experiencing was to my cardiologist, Dr. Sanjay Dhar. I was there on Friday for an Echocardiogram to check the condition of my heart and get a baseline before chemotherapy treatment. At the time, Dr. Halpern, who performed the Echo said it looked like my EF (Ejection Fraction) was pretty much unchanged at 40% from the Echo performed at Stanford in July 2015.

The official written report from Dr. Dhar confirmed an EF of 40%. He checked my heart and everything seems to be just fine. When I explained to him I was told that the chemo drugs I would be given were heart safe, he replied, "Nothing is heart safe". And then followed up to say they will be following me very closely during my treatment and I would see him again in six weeks, rather than the usual 4-6 months. So this made me very pleased.

Then I splurged and stopped by Costco to pick up a Vitamix blender for us. I've heard wonderful things about the Vitamix, and have used my daughter's several times. So I am very excited with our new gadget, although I haven't used it too much yet. I think I'll take a couple of smoothies with us to chemo tomorrow for a snack.



Please continue to keep me in your thoughts and prayers.

Life is Good... Most of the time

Debbie... aka the cancer & cardiomyopathy FIGHTER!!!
LIVESTRONG

• I AM STRONG • I AM HEALTHY • I AM LOVED •
THANKS for visiting! Comments are good. I look forward to your comments.

Sunday, March 13, 2016

Anticipation of the Chemo Train

Late last week things started to fall into place for my treatment plan, which was after my initial visit with my oncologist this past Wednesday.

But a couple of nice distractions happened first -- I was able to fit in my Tai Chi class on Thursday. It was challenging as I've been tired of late, and taking a couple of really good naps a day. Maybe that is why I keep waking at 5am. Or perhaps it is the early bird waking that then causes the need for a nap or two. Either way, I'm rolling with it. Then we got out one evening for a fun time with good friend's Cathie, Gene, Kate & Jon in Sonoma. The girls had a bite to eat and then walked to Sebastiani Theatre to see the movie The Lady in the Van. The boys had their dinner while we were away. Then we all gathered for desert before heading back home. It was so nice to be talking about things other than doctors and cancer, although we did do a tiny bit of that too.

On Friday I talked with Amanda,  the Oncology Nurse Navigator at St. Joseph's Cancer Center (formerly Redwood Regional). My prescriptions are waiting at CVS Sonoma for me -- a couple for anti-nausea, one for sleep and/or anxiety, and one other. I skipped the numbing agent for the port access as I didn't need it back in 2011. 

Amanda put me in touch with UCSF and I called to get registered into their system. Then Sharon, the New Patient Coordinator at UCSF, called to say everything was in order and that they would be calling very soon once Dr. Michelle Melisko has reviewed my file. The expectation is that she will see me in about 7-10 days for a consult/2nd opinion and I'll also get a brain MRI at UCSF as well.

I will see my Cardiologist on Monday to get the official report from the Echo I had on Friday. Although they told me right then and there my Ejection Fraction had remained at 40%. This is great news!

Then the knitty gritty stuff begins...
  • The Power Port will be implanted on Tuesday.
  • Wednesday I will have my first oncology appointment, which is a pre-infusion appointment.
  • Drum roll please, I have my first infusion on Friday.
I need to call and ask about labs, as I am a bit confused since my phone conversation on Friday. And I also need to ask Amanda if the appointment for FoundationOne is in place or do I need to initiate it.

I'm exhausted already just thinking about all of this.

We had plans for the weekend to get together with our two daughters and their families, just for fun, AND to do some family portraits, something we have never really done before. Can you tell where my mind is going with all this now floating around in my thoughts. I'm hopeful to get this in before the hair loss. But because of the huge storm we experienced, and a runny nose in one family, and full blown head cold in the other, we postponed it until next weekend. Hopefully the weather will cooperate and we can get some photos outside. But Sunday evening we did make it out to dinner close by with friends. I hadn't been to Glen Ellen Inn for quite some time, and we both agree we need to frequent there more often. Dinner and laughter; just what the doctor ordered.

That's the latest in the Stage IV breast cancer saga for little old me.


Please continue to keep me in your thoughts and prayers.

Life is Good... Most of the time

Debbie... aka the cancer & cardiomyopathy FIGHTER!!!
LIVESTRONG

• I AM STRONG • I AM HEALTHY • I AM LOVED •
THANKS for visiting! Comments are good. I look forward to your comments.