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Meenakshi's Journey

On December 12th, 2018 I was diagnosed with Breast Cancer. 9 days later I started my first chemotherapy session. This is a website to update friends and family on the s[...] read more

Latest journal entry

Posted 2019-08-31T19:02:00Z

The endless journey..

It has been a little over 8 months since I was diagnosed with breast cancer (December 12) and I have now completed active treatment -chemotherapy, surgery and radiation.  Even though I knew this was not the case, it was easier to think that this journey was limited to these treatments and had an end date - 16 weeks for chemo, 4 -5 weeks recovery and rest, surgery, 4-5 weeks recovery and rest, 6-7 weeks of radiation and then it is over.

After Dr. Lee Char told me she removed 9 lymph nodes, I started to learn about at least one of the long term consequences and side effects of the cancer treatment that I would have to worry about– in this case a chance of getting lymphedema. A couple weeks after surgery, I had an appointment with Dr. Jeske which I thought would just be to discuss next steps after radiation.  Unfortunately, at that appointment she told me that I would need to get a shot every month for the next 5 years.  (More on that below). It is one thing to take a pill every day - another to have to take a monthly shot.   I did not write about it at the time because I could not wrap my head around the fact that every month I would need to go back to the doctor for the shot.  Moreover, since I still had 7 weeks of radiation to get through,  I shifted my energy to the daily radiation.

I was starting to get more anxious about the future the last few weeks of radiation.  There are so many things to think about and manage for the next 5  to 10 years, or for life and I am starting to feel a bit lost.  In order to prevent lymphedema, I need to strengthen my arms with light stretches– so no weight bearing exercises right now. However, the shot and medicine I will be taking can cause osteoporosis, so I need to do strength training to try to prevent that.  One of the keys to prevention of recurrence of cancer is not gaining weight specifically in my stomach.  Of course, one of the side effects of the medicine I will take is weight gain in the stomach. 

Every six months I will need to take a breast MRI or a diagnostic mammogram to make sure the cancer has not come back.   I also told Dr. Jeske that I would like to take a PET scan to make sure the cancer has not spread outside the breast.  Right now, I have so much radiation in me – so the earliest I can take the test is December. In addition to that, I need to continue physical therapy, see a nutritionist, and find another psychologist or counselor. 

I will admit I am overwhelmed – and much more anxious than I was when I was diagnosed because at that point I told myself there was an end to this, and now the journey seems endless.

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I finished radiation on July 30 – Here is a picture with Cora Espina and Don Chan – the radiation therapists who were with me at most radiation appointments. 

I also met another patient in the locker room (another Margaret) a few times while I was getting radiation. She was diagnosed around the same time as me but started her radiation later. On my last day of chemotherapy, she gave me a gift, which was completely unexpected and so sweet.

A few days later, I went for a check-up and took pictures with the rest of my care team- Dr. Roy Abendroth and nurses Tina Huynh and Ivy Wong.

 

Finally, here is Saskia Thiadens who is the lymphedema specialist I mentioned last time; I will follow up with her in October.

I went back to work about 2 weeks after radiation ended. The fatigue is still there but getting better.  My skin did get worse after radiation ended which was expected.  I also started to feel pain on the right side.  A couple of weeks later, I felt stiffness and had a hard time lifting my right arm.  I thought it could be lymphedema – but it also is a side effect of radiation.

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Radiation was long and tiring so I tried to meet up with friends and family when I could. Here are some more pictures with family and friends in July. 

July 4th weekend:

I went to Boston for work –we stayed near the harbor during an extremely hot weekend. I had lunch with  Rich a friend and former colleague of mine, went to the California Academy of Sciences with Girish, Angie and their sons, and had a surprise family picnic to celebrate my mom’s birthday:

I also had a chance to start celebrating the end of radiation in July – I will post more celebration pictures in my next post. Here is a picture of the first celebration with Pauline and Kathy on July 31st.

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I was diagnosed with a hormone positive cancer (Estrogen and Progesterone) so in order to try to prevent cancer from returning, the hormones need to be suppressed. I originally thought I would need to take a daily dose of tamoxifen for 5 to 10 years.   Dr. Jeske said that there have been studies that show aromatase inhibitor plus ovarian suppression is better for pre-menopausal women.   Ovarian suppression uses drug therapy to stop the ovaries production of estrogen.  This is what the monthly shot of Lupron does.  Aromatase is an enzyme that also produces estrogen in the fat tissue. The daily pill I need to take is an Aromatase inhibiter to stop the aromatase from producing the estrogen .The Aromatase inhibitor I will first start taking is Arimidex.

The combination of the two will force my body into an early menopause.  Unfortunately, the side effects will be worse since it will be a forced process.  One of the side effects of chemotherapy was hot flashes – I am expecting them to be worse now.  The others are as I mentioned before, osteoporosis, bone pain, weight gain, mood swings, fatigue, etc.  I have had four shots so far and will start the pills soon.

One thing I learned about hot flashes – it does not just make you hot- it also makes you very cold.  I was at a meeting for work and ended up sitting a bit away from everyone because every few minutes I had to either take my sweater off or put on my sweater and wrap myself with a shawl.  This is going to be fun!

Another thing about Arimidex – I will need to request the brand name not the generic drug.  The generic drug has been made in companies internationally that have recently been in the news exposing issues with some generic drugs.  Since this is something I need to take daily to prevent cancer from coming back, I cannot take a risk.  See this article from NPR.  'Bottle Of Lies' Exposes The Dark Side Of The Generic-Drug Boom

Dr. Jeske has an amazing team – and I am glad to have their support during this time. Richard DaBella has been part of my care team since the beginning.  I had my chemotherapy orientation with him back in December and he has been very helpful answering many of my questions.  I finally was able to take a selfie with him:

At one appointment, I saw this. I will need to remind myself of the message many times during this endless journey.

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