In my treatment journey, one of the things that I am very proud is that I have remained diligent about has been my exercise regimen (thru good and bad days). Before this relapse, I was not consistent with any exercise and most times found excuses to not do them. The term ‘Coach Potato’ fit me to a T! Now with a weakened spine, I knew having a weakened core would not work. Also, many exercises would not work especially the upright ones (treadmill, cycling, Zumba, etc.). In came ‘reformer Pilates’ as I knew it would support my back and not put pressure on it. So as soon as my neurosurgeon okayed it for me (which was March), I found a wonderful trainer Sara who worked on me 1:1 and we set course to strengthen my core three days a week. We worked a lot on legs, arms, abs…everything! There were days I dragged myself out of her studio and was done for the whole day! Now 6 months later, I feel stronger, in shape, and getting my energy is back! Thanks to Sara.
Also, in March I returned to work. It was hard! I didn’t have the energy, got tired and drained fast, and office setting especially the chairs didn’t work me (my doctors didn’t want me sitting but standing or lying instead but with weak legs sitting was the only option in the work setting). There were days (which were most days), my boss would send me home or allowed me to telecommute from home, which I was so grateful for. Interesting part is that my 1.5 commute didn’t bother me, and I attribute that to the car chair which enveloped my back and I could change its angle. Initially, I had to ensure that my exhaustion didn’t cause me to fall asleep on the wheel! However, as time passed, my energy got better and now I am at work full-time and fully functional 😊
Lastly in July (over July 4th holiday) and last week (over the Labor Day holiday), I took two trips to see how I would handle long distance travel. The first trip I took was to Seattle and Vancouver BC. I flew into Seattle where my Uncle and Aunt came to pick me up, and then they drove me to their house in South Surrey. It was a great getaway and my body could only handle small treks. We also drove to Victoria Island and went to Butchart gardens (which was the fastest trek I took as my back bothered me) but overall it went well. Over this past weekend, I took a road trip where I drove to Oakland. This trip was part business and part pleasure. I went for an interview and then visited family and friends in Orinda, Hayward, and then drove to Clovis (Fresno) to visit family with a stopover at Bakersfield to visit more family.
I am thrilled, happy and excited to report that I am starting to feel the old me again. Although the treatments are aiding in fighting the disease and continuing to heal me, I feel that being diligent with core strengthening is also allowing me to function as normally as possible. I am so looking forward to other adventures…. Yeeha!!!
The news of his passing hit me like a ton of bricks! I don’t know why but I feel a deep gut-wrencing loss even though the news is not a surprise, Is it because the finality of death? Loss of a noble soul (which these days we don’t see many good examples of)? or is it disease itself (cancer and it hit home)?
Regardless, the biggest loss is loosing such a honorable man; a man of principles, integrity, resiliance, humility, and grace. I consider him my hero and role-model, and one what I will honor him is to stand for what’s right even when its unpopular or when you may be the lone wolf!
RIP John, there will be not another one like you!
My beautiful 14 year old niece came visiting & wrote me such a beautiful poem. Not only is it deep but also filled with immense love & compassion! I wish her all the blessings & success in life ❤️
Last week, I saw my oncologist for my 6 month followup. Overall the visit went well, he added Palbociclib (Ibrance) to be more aggressive with my treatment. According to him Letrozole by itself was the treatment a decade ago but now with all the advances in breast cancer research, adding newer meds like Palbociclib have shown to increase life expectancy. Plus he ordered Zoledronic Acid (Zometa) infusion every 3 months to build bone! He also ordered a bunch of other tests, such as, blood-work panels to check my liver and kidney function, STAT CT and Bone scan.
The biggest concern I have is from starting Palbociclib (Ibrance) as neutropenia and lowering white blood counts (WBC)! Does that mean I am going to be prone to infection/ other diseases? One of the things I was looking forward was to traveling to India to see my sister (who’s visa got cancelled) and see family and friends. I know I can build the red blood counts (RBC) thru food and supplements, but what about the WBC? Needless to say I am bummed but I guess this means more research (before this special ordered medications comes).
Lately I have been really concerned with the amount of hair I am loosing. Perhaps the better word for it is ‘shedding’, with my bed, pillows, bathroom floor, shower, sink, clothes, etc., all littered with my hair. Ironically, it feels like I am competing with my dogs regarding who will shed more! Who knew that I, who bravely handled the worse part of my disease progression, would be so challenged with this aspect.
Truthfully, the thinning of the hair to the extent you can see the scalp in many places is very demoralizing, worry-some and very difficult to deal with. I have to shampoo daily plus learn new ways to part or style hair to ensure they remain fluffy, minimize thin spots and combat sebum that flatten the hair and make these areas visible. Dry shampoo and root touchup sprays have become my best friends!
Also, I don’t remember my oncologist, pharmacist or my online research highlighting that hair loss was a potential side effect of Letrozole. Therefore, this amount of hair loss has indeed been quite a surprise! Although my recent email exchange where he shared ‘hair loss / thinning is a side effect of any hormone blockade medication. There are varying levels of severity but I tend to see a “plateau” phase where the thinning reaches a certain point and stabilizes. In other words, it would be highly unusual for a patient to lose their hair entirely with this medication’.
I take this as great news which gives me immense hope! Now my new plan to aid/stimulate hair growth is to 1) daily massage my scalp with ‘Brahmi oil or Bringraj oil’ at night and washing it out in the morning (will need to protect my pillow and sheets); 2) restart ‘Manjishtha’ to support my blood, lymph and circulatory system; 3) incorporate ‘Amla’ for a healthy dose of Vitamin C, etc. My research also shows that topical 5-alpha reductase inhibitors (found in pumpkin see oil) and supplementation of vitamin C (Amla) and omega-3 fatty acids would support hair growth! Lets see if this plan aids me in restoring my crowning glory. I will report out in 3-4 months if this plan helps me any. Wish me luck!
On my last day of radiation, I distinctly remember walking out of the radiation center feeling very jubilant and hopeful. Not only were my sessions done and over with but the nurse’s reassurance that each week thereafter will make me feel even better and stronger.
Soon afterwards, I noticed that I started having difficulty swallowing where my esophagus met the stomach. I felt pain with each time I swallowed any solid food or gulped a drink. Liquids, however, were more tolerable as long as I sipped it slowly. My strength deteriorated and fatigue worsened further, and developed tachycardia soon afterwards (and lasted till April/May, my radiation concluded in February). I was out of breath and couldn’t even climb 11 steps to second floor to get to my bedroom without gasping for breath! My face swelled up and the irradiated areas in the back (along the spine and in the front) changed color and became black and blue(and later in the stomach as well). Other things that developed and I am still feeling with in May is skin dryness, excessive flakiness, skin peeling, swelling of feet, etc.
I continued on Manjistha (to help cleanse the blood and lipids) and Ashwagandha (for strength and — stress), along with good nutrition (stews and soup with a lot of green vegetables) and stayed away from raw food/vegetables which Ayurveda says is hard for the stomach to digest. Wore loose soft fabrics. Drank mostly warm water for deep cells absorption and later added coconut water. Also in April returned to pilates!
It was a beautiful day to celebrate and honor my mother. Another highlight was getting to do so with Aunty Grewal as well. Both are such amazing women and I feel blessed.