This past Saturday I decided to go by my local stable. Right from stepping foot in the grounds, this horse and I made some sort of connection! Both of us locked eyes and started to walk towards the other as though the divine wanted me to have some sort of connection with this beautiful equine. He nuzzled my hands (I am sure her was looking for a treat) and later let me stroke him. He/she was so soft and gentle. It certainly uplifted my soul! I am sure to this again 🙂
Today in India, Holi (the festival of colors) is being celebrated. Although I am not there with my friends, I am reminiscing of all the good times I have had playing Holi. I vividly remember putting colors on each other, throwing/bursting water balloons, using pichkaris (water guns) filled with colored water on suspecting and unsuspecting folks and yelling ‘Holi Hai’ was something I looked forward to all year. Everything about it was magical to me! We wore our oldest clothes (so that we could chuck them after the festivities), assembled in the gardens of the Air Force Mess, sang ‘fun’ songs with bad dholki, tried to drink beer and eat ‘bhang’ pakoras (which was strictly prohibited by my parents; with my mother appearing anytime we attempted to try it. I swear she had 6th sense…lol!), made fun of all the intoxicated folks, etc. I miss those good old days but live vicariously thru my friends 🙂
Happy Holi Folks and may this festival of color fill yours with immense joy and happiness
For the past few months, I have been faithfully taking a concoction of Ayurvedic medications (in addition to my treatments) from Dr. Kharatilal from Clovis. Although he is up in age, he has studied from one of the premier Ayurvedic colleges, when education was more pure, and where allopathic (western) medicine was also taught. So he is very verse with the drug interactions. So every month, I take a few hours trip from LA to Clovis (and stay with my cousin) so that he can assess the palor of my eyes and skin, and check my pulse, in order to know what meds he needs to tweak.
I would say although these trips have not been always convenient (as it takes a lot of time to travel to and fro), it has been really worthwhile. My energy & stamina are up and I can take a full day of work, my hair is starting to grow…woot! woot!, I feel balanced, etc. I am keeping up with my spiritual practices (although I may not be the most disciplined) but I have set myself a beautiful meditation corner where my dogs love to hang out too! I feel like I have made a lot of progress in not holding stress or taking any stressors to heart.
My oncologist is really amazed at my progress as well but I have a confession to make…..I haven’t shared fully my Ayurvedic treatment with him…. It’s not that I am keeping things from him or trying to jeopardize my treatment plan, rather, I learnt early-on that the doctor’s medical education does not entail teaching them any aspects of holistic medicine or they have knowledge of them. So as Ayurvedic medicine does not interfere in conventional medicine treatment, I am okay it being my little secret!
My oncologist was elated with my progress. He was amazed at my bodies positive response to Letrozole therapy, how the cancer spots in my ribs and in adjoining lymph node were clear, and he he was confident in calling it resolved (in my chest area). However, he was unable to discern if the spots in my spine were cancerous or scar tissue! Taking no chances, he decided to add two additional therapies – 1) Zometa infusion every three months (to rebuild my bone so that future problems or breaks can be mitigated), and 2) start Ibrance oral chemo to augment Letrozole therapy as studies have shown that women with advanced breast cancer who take both Ibrance and Letrozole lived about 20 months without their cancer getting worse, compared to about 10 months for the women who received letrozole alone! He did, however, warn of the drop in blood counts (both red and white) seen with Ibrance and asked for greater vigilance around infection, fever, anemia, fatigue, weakness, nausea, etc.
My appointment for Zometa came first. I was given Zoledronic Acid 4 mg in Sodium Chloride 0.9% 100 mL IV at the infusion center. It was a short session and the nurse upon my discharge went over the potential side effects but mainly that I will experience flu-like symptoms, fevers and chills. That night and the next morning were was pretty uneventful, however, that was short lived! I started spiking a fever of 102.8F, then the chills came and my joints very achy. I piled couple of blankets despite being a hot summer day (with no air conditioning given the proximity of my place to the beach). It totally felt like I was having a bout with flu! Also, internally, I was feeling that I was burning up. I drank a lot of fluids (a lot!) but my month and my body felt parched. Tylenol (like the nurse suggested) did break the fever to 100.3 but the low grade fever continued. By the second day, my teeth were chattering as it does in winter time and despite being under layers of blankets. However, on the third day, I was back to normal with no fever, chills, or weakness, go figure!
Last night’s launch of Falcon 9 not only lit up the Southern California skies but also gave a spectacular treat! It appeared like a sign from heavens and looked more like a celestial phenomenon. I think I may have made a wish…lol!
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!!!
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!
Warrior Princess 