Alpha’s Story

Site created on January 6, 2014

(details added by my co-editor/husband, David, are in italics) 

I felt a lump in my right breast July 2013.  My doctor thought it was "dense breast" and advised me to make sure I got my annual mammogram when it was due in Sept.  In August, the lump was getting bigger and would hurt every once in a while.  I went to see another doctor, who also said it was dense breast and recommended ibuprofen for the pain and a mammogram.  The mammogram was negative. 

So I put it aside but would occasionally wonder what would cause my breast to get more dense. (Everything I could find said it would get less dense as we got older.)  Finally the growth changed the shape of my breast and the pain was more frequent.  

When I finally went back to my regular doctor after Thanksgiving, he requested a biopsy, which was done by a surgeon two days later.  The surgeon did the biopsy but requested an ultrasound, another mammogram, and another biopsy.  The 1st biopsy results were positive for breast cancer [grade III, poorly differentiated].  The 2nd biopsy was done on my lymph nodes.

At the return appointment with the surgeon, we got the news that I had cancer but would need to go through further testing to determine how far it had spread. The surgeon requested the tests that the medical oncologist would ask for anyway so the results would be available by the time they could get me in to see an oncologist. [full body CT scan, bone scan, heart test, MRIs on each breast, blood tests], all looking to see if the cancer had spread to other organs] 

When breast cancer metastasizes (spreads to other organs), it typically 1st goes to the lymph nodes.  Because the lymph nodes feed into the blood supply, from there the cancer could migrate to almost any other organ.   


The lymph node biopsy came back positive, meaning the cancer has spread from my right breast to the lymph nodes in my right armpit. The mammogram was still negative but the ultrasound showed a tumor.  

I was diagnosed with Stage III Infiltrating Lobular Carcinoma in December 2013.  The tumor in my right breast was about 10 cm by 11 cm [about 4 inches in diameter].

The 5-year survival rates for localized breast cancer are almost 99%.  The 5-yr survival rates drop to 84% when the cancer has spread to the lymph nodes, and plummet to 24% when the cancer has spread to distant organs.  


So the good news is: Cancer was *NOT* detected in any of my distant organs.  

The bad news is: There are likely some cancer cells in other organs but not numerous enough to be detected by medical tests at this time.  If left untreated, they would eventually spread the cancer to the other organs.

My cancer doctors [the surgeon, chemo oncologist, and radiation oncologist] recommended that I do the chemotherapy first.  There were several reasons:



- Stopping the cancer from spreading is probably the most important goal, and chemotherapy is a whole body treatment and the best weapon to stop the cancer from spreading.
- The tumor is so big that surgery cannot remove all of it.  Apparently there is an issue of closing the incision when too much material has been removed.  Chemo should shrink the size of the tumor and make the surgery easier (and maybe more effective?).
- Doing surgery 1st would delay the chemo treatment.  And there is always a chance of infection after the surgery, which would delay the chemo even more.
- Surgery cannot access all of the lymph nodes under the right armpit.  
Because of the fast growth and size of my tumor, my cancer doctors recommended an aggressive treatment with 2 chemo regimens of 12 weeks each, followed by surgery to remove breast tumor and the accessible lymph nodes, then radiation treatment, and then an anti-hormonal receptor pill for 5 years.   [My cancer tested positive for the estrogen receptor, which is a good because it can be used as a target for treatment]. 

The 1st chemo regimen is called AC (Cyclophosphamide & Doxorubicin) and is administered 4 times via IV once every 3 weeks.  (12 weeks total).  The 2nd chemo regimen is a drug called Taxol and is administered once a week for 12 weeks.  Radiation treatment (after the surgery) is 5 days a week for about 5 weeks.  My treatment is a long haul, probably close to a year. 

I had my 1st chemo infusion was on Dec 27.  More about that in a later post.  One of the big dangers of chemotherapy is that the white blood cell count drops dramatically 7-14 days after the chemo infusion.  During that period, the patient has such a weak immune system that a cold or the flu could be life-threatening.  Because of that, I will have to abstain from most social contact.  I hope everyone understands.  Circumstances may improve later on, but for now we are being conservative. The kids all got flu shots (not quite kicking and screaming) as recommended by the doctors.

[Dave wants me to write down my feelings during this time] I alternated between being in shock, scared, frozen, and trying to not obsess about it. The testing and waiitng for the results was very stressful so I am grateful that Kaiser was able to get me scheduled for the tests so quickly, especially during the time of year than many of the staff would want to be on vacation (5 days from surgeon's referral to oncologist appointment and test results that it was Stage III; 10 days from oncologist visit to chemo infusion). Stage III is better than Stage IV and once I actually started the chemo, I think we all felt better.  Now something was actually being done now to stop the spread.



Newest Update

Journal entry by David Doo

It has been 3 months since Alpha’s funeral service, so I think it’s time for an update.  I waited a few months hoping I would have some perspective, but I can’t be sure whether I have that or not. 

First of all, thanks to the many people who came to Alpha’s service at Pacific View.  It is natural and common to cry at a service, but I also tried to put in some lighter moments – mostly via some stories about Alpha and me.  I hope I managed to do that, even if I did mess up one of the punch lines.

Second, thanks for all the cards and gifts that people sent.  There were over 200 cards and gifts, so I apologize for not thanking people individually. As I said at the service, some of the handwritten words on the cards moved me to tears. 

Third, thank you for all the donations to the Guild for Infant Survival and to Relay for Life.  

As for how we are doing, I generally answer that with a lukewarm “Ok”.  Someone said to me today, “I know that ‘ok’, because I say it a lot, too. It means you’re doing the best you can.” And she was right. 

A month ago I talked to another widower who lost his wife after 30+ years of marriage.  He [Adam] said it was like “only half of you was there and the other half was missing”.  That is the best description I have heard for how I felt.  

After 36+ years of marriage, the division of labor and responsibility is so ingrained, it is unconscious.  And the feeling of loss pervades your entire life.  It is not just the dreams and plans that go unshared, but also the little everyday conversations. In many ways, Alpha was the "glue" that held the family together.

Adam also said that you are never prepared for the actual death, even if it is not sudden.  And that was true for me too.  With all of Alpha’s recoveries from near-death scenarios, I subconsciously thought we had more time. 

But life goes on for each of us.  At first the focus was to get through the next day and the next week, e.g. planning the service, cleaning some stuff out of the house, keeping my performance commitments for the groups that I play in, etc.  I do okay focusing on the next week or two.  I have trouble with longer term planning – meaning it just doesn’t get done.  Maybe it’s an avoidance mechanism.  Hopefully, it will improve. 

As for the kids, Jackie is graduating from UCSD in June with a double major in chemical engineering and math & computer science.  [I know it sounds like 3 majors, but the math & computer science is 1 major.] 

She has accepted a job with Bechtel Corp. in Charleston, SC to train Navy personnel on nuclear reactor maintenance.  Of course, first they have to teach her about nuclear reactors!  She has 6 months of class work and another 6 months of hands-on training to get certified.  She just submitted her application for a DoD security clearance. It will probably take 2-3 months for the clearance, and she won’t start until the clearance is granted. 

Joanna just received her masters in library science from San Jose State University.  [It was an on-line program, so she lived at home.]  She is looking for librarian jobs now, but in the meantime still works at the Anaheim Public Library as a clerk.

This will probably be my last post to Alpha’s Caring Bridge site.  To paraphrase someone else’s Caring Bridge post after their spouse passed away: This site was about Alpha’s story and now that she is gone, it doesn’t seem like the right vehicle to talk about the kids and me.  

So I wish everyone well, and thank you again for your support to Alpha and us over the last 2+ years.

--ddoo

Patients and caregivers love hearing from you; add a comment to show your support.
Help Alpha Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Alpha's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Comments Hide comments

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top