Grateful — Thank you for being there for us!!
What can I say — It is so tough for me to put it into words. Thank you for the overwhelming response to the part-1 blog. My phone was buzzing with messages and calls on the day my blog went live. I got to speak with some friends after many many years and cherish our school and college days. With the craziness we deal with daily, it means a lot to know that I am in your thoughts and prayers. You all are truly amazing!!! I appreciate the power of social media to be in touch and share my journey with you. It moved me immensely to learn about the personal stories that so many of you were comfortable sharing after reading my blog. I am thankful to you all for sharing my blog with your network and helping me spread awareness.
I don’t particularly like sharing this data, but I have come to know of 3 people who got diagnosed with breast cancer and lost an acquaintance (a young mother) in the last couple of months. This morning I got the news of my aunt succumbing to cancer. I was not close to her, but she was close to someone very special to me at home, so my heart goes out to my uncle.
However on the positive side, the warriors — survivors, continue to inspire me to fight my battle. I get to personally experience a few in my clinic during my chemo sessions. I am very happy to receive messages from friends and family when they get their mammograms done. Get your check-up and follow-ups as suggested by your doctor.
Please continue making health your priority — everything else can wait.
How am I doing?
In part-1 of my blog, I had shared many things from diagnosis to treatment of the phase-1 harsh chemo cycle experience. In Phase-2, there is a total of 12 chemos to be taken weekly. I have completed seven so far, and there are five more to go. There are many types of cancer, and in breast cancer itself, there are seventeen types. The treatment course and medication are different for each, and every person reacts differently to the medicines, so the side effects that one experiences also vary. With my triple-negative, invasive cancer, I have to undergo 16 chemos for now before surgery.
On a positive note, I have been responding well to the medicines so far. I go in for my chemo on Tuesdays. After I check-in, the typical routine is they do my blood work followed by a meeting with my chemo coach or the doctor. I numb the port about a half-hour before my appointment. During this phase, the port kind of acts up most days, which is common. I did not know that and the first time, I almost panicked and was in tears when the nurse couldn’t draw the blood. So sometimes hand exercises work, sometimes I have to lay inclined and sometimes almost flat. Thank god for the recliner chair — I make the best use of it to ensure the nurse is able to draw the blood.
After this 10 minute drama and discussion about the issues around the world with my nurse, the chemo process starts with steroids, nausea medicine, antacid, Benadryl, and then the two chemo medications, each chemo medicine lasting for an hour. So on the whole it’s about a four and half hour visit. I am functional for the first couple of hours, but once the Benadryl kicks in, I am in a deep sleep — transposed to a different world. The medicines are through IV, so my eyes automatically shut with the last drop of Benadryl going in. It gives me the rum and coke effect without the alcohol. Hahhaa!! It’s just amazing to see the effect almost instantly. So it’s a deep two-hour sleep for me on Tuesday mornings.
With the steroids, though, I am wide awake the entire Tuesday night and hit the bed on Wednesdays by 6.30–7 pm. Just don’t ask me what I do on Tuesday nights — it’s catching up on many things from TV shows to work to reading. Wednesday during the day its a drag but not as bad as it seems for not sleeping an entire night. I strongly believe that the engineering days have prepared me for these night outs.
Chemo and side-effects go hand in hand. Chemo is a cumulative effect — more the chemos, more the side-effects. While this cycle is comparatively lighter from a medication standpoint, however, there are still side effects that I have to deal with every week, even in this phase.
More than cancer, it’s the chemo that takes a toll and tests you constantly. I experience stomach cramps on and off; however, they have significantly reduced over the weeks. Nose bleeds are a common occurrence as well. I have lost almost all eyelashes and 95% of my eyebrows. Not being much of a make-up person is leading to some experiments now with the eyebrow pencil. Discoloration of the nails — you can see in the picture. Periodic constipation is still on the cards, so milk of magnesia comes to my rescue. Memory loss and not getting the right words when needed are conspicuous changes with this phase. I continue to take a lot of notes at work and home. To put into perspective, if I select a new song on youtube to watch or listen to, I am blank and cannot recollect anything after a few hours. I have to strain my brain a lot to get it, so I opt for the easier path — checking the search history 🙂
The medicines are so potent that they affect the entire body. However, one of the most prominent side-effects of my phase-2 chemo medications is neuropathy, which is the damage of the peripheral nerves.
As a result, I suffer from nerve-tingling, stabbing pain in my legs and pain in the tip of my fingers. My fingertips feel like they have been squished between a door, making it difficult to open jars, bottles, and sometimes even to button. Thursday evenings, I experience fatigue, and it’s the on-set for pain, but my worse days are from Friday to Sunday afternoon. I use a massager, Robin helps by pressing my legs for hours on Saturday. My younger daughter lies on my legs and reads her book to help relieve the pain. All these have very temperoray effect. I have a good pain bearing capacity but on a scale of 1–10, this pain over the weekend is almost 8–9. By Sunday evening, my energy levels come back up. Monday, I am back to feeling a lot better, a reminder from my body to get ready for the Tuesday chemo.
Good news — The FDA approved a new medicine for triple-negative breast cancer, the first immunotherapy drug, towards the end of July. I got my first-course last week. It has similar side effects as chemo, but I am so glad I could get one. People like me have a better chance to be cancer-free!! Because of the tireless efforts of researchers in every field, we see so much progress around us. I am certainly counting my blessings for such researches.
What went wrong during this phase-2 cycle?
I lost three weeks in-between of not being able to take chemo. Twice because of my low white blood cell (WBC) count and once because I was tested COVID positive. The weekly chemo cycles bring down my WBC count as low as 1.5, making me very vulnerable and challenging for the body to fight against any infection. During one such week, when the count was down, I developed fever at night. With chemo, if you get fever it could lead to sepsis — a life-threatening condition that occurs when the body’s response to an infection damages its own tissues — leading eventually to organ failure due to a severe drop in blood pressure. Late at night, around 11 pm, my temperature went up to 102, and we were waiting for the on-call doctor to call us back. In the meantime, Robin started applying cold water strips on my forehead and continued for almost an hour, which eventually got my temperature to 99. However, I was advised to go to the emergency to get all my vitals checked. The entire drive to the emergency, I could see an apprehensive Robin, touching my forehead continously to check on my temperature.
Austin right now has a very high number of COVID cases, and the emergency room that night, more than a month back, was a testament to it. Being a cancer patient, they asked me to stay away while getting the room ready for me. They had to do multiple tests to make sure all my vitals are good. I was first immediately given antibiotics through IV while they did all the tests in parallel.
After the test results came in during the emergency visit, the doctor said that everything looks great, and I am good to go home. He then walked in after 10 minutes and said — Sorry, I spoke too soon; you have tested positive for COVID. At this point, I looked up and said — OK, BRING IT ON!! Honestly, though, if the internal organs could talk, I am sure they would have wanted some clarity from me — Lady, be clear about what do you exactly want us to deal with — cold, cough, cancer, chemo, COVID? Pick one at a time. We cannot multitask, and why are you fighting everything starting with a C –adding to the confusion 🙂
Knowing I tested positive, the nurses and doctors continued being kind to me and taking excellent care. They were feeling bad for me, that even though I was fully vaccinated, I tested positive and had to deal with the fever because of my low immunity. For the next 12 hours, I was in the hospital under observation. With the increased hospitalizations because of COVID, I was safer at home, so I was discharged around 3 pm the following day.
I owe it to the vaccination for not showing any symptoms, even with my condition and quick recovery.
Unfortunately, there is nothing much I can do to get my WBC up with these weekly chemo cycles. So Tuesdays become a guessing game if I will be able to get my chemo or not. I walk in to the clinic with my mind fully ready for the chemo but my blood rejects it (with low WBC) — it’s becoming more powerful than I had imagined it to be. I need to see more love from my WBC to feel protected and continue the chemo without any interruptions.
What’s next?
Got five more chemos to go, including this week. So I am hoping if everything goes well, my chemo cycles should be complete by the end of September. Get a 2–4 week break before going in for my surgery. With my low immunity and increased COVID cases in Austin, I am not going out anywhere other than the clinic for Chemo and not meeting any friends in person. I have declined the request to many of my Austin and other city friends even though I would loved to meet you in person.
As my friend said — mentally and physically my body is going through a tornado but I have the goal to be cancer free as soon as possible. Please continue keeping me in your thoughts. It truly keeps me going.
Breast Cancer Journey 