Staying Powered in the Cancer Marathon Journey

Since my previous blog – I choose to SMILE, I have been holding up pretty well. I posted emotional blogs the last few times and wanted to share a quick update on my health and address some commonly asked questions – How do I Motivate myself? How can Friends and Family help? How are my children adjusting to the new normal? 

Health Update

I have undergone four more chemos, and 2-4 more are coming up before we do the scan again. Usually, I get my chemo on Thursdays. It is back to back two Thursdays, and I get a break week. Of course, losing hair, diarrhea or constipation, nerve pain, and low White Blood Cell (WBC) counts are common side effects. So the profile picture explains the hair loss since my last blog. One morning during the shower, a bunch of hair came off my hand. Robin again helped with the trimmer to give me a new look. 

I have been dealing more with constipation than diarrhea. Experienced diarrhea only once during these three rounds of treatment so far. Nerve pain has been there on and off – Robin does the massage to release the knots on my nerves which have helped me get tremendous relief.

One more thing that I have to mention here is that I continue to do my Peloton biking almost every day. It ranges from 30-45 minutes with a 5.5 to 8.5-mile distance I average. The workout has helped me get an appetite, relieve constipation, not form too many nerve knots on my calf muscles and ankles, and keep my stamina at reasonable levels with the ongoing chemo. 

WBC count has been playing an important role throughout my treatment. With it going low after the first chemo during this new 3rd line of treatment, I went down with shingles. So after that, I got a WBC booster injection after every two chemos. A significant side effect of the WBC shot is bone pain. Although I take Claritin, some days after the WBC shot, I experience fatigue and severe bone pain. I have also experienced increased pressure in the skull several times, where I almost felt like my brain would explode any minute. With my limited medical knowledge, every nerve, bone, and muscle of your body hurts, which I am guessing happens when the bone marrow is over-functioning to produce the WBC. At that time, Robin has to press my entire body to help me get relief which I usually do within 5-10 minutes. But during the pain, it almost makes you feel immobile with only your eyes moving, and the rest of the body is so stiff, or at least that’s what I feel like someone has wrapped me up very tightly. 

An interesting thing about this chemo treatment – the chemo medicine name is TRODELVY. Triple-negative metastatic breast cancer patients, along with a few other cancers, when the patient has already received two or more prior treatments, there is a spread of Cancer to other parts, and when Cancer cannot be removed surgically, receive TRODELVY. In the clinical trial, TRODELVY showed it could slow the progression of metastatic triple-negative breast cancer. I was happy to read that some patients who took TRODELVY lived nearly 3x longer – almost five months without cancer progression than those taking traditional chemotherapy. You bet I will take those extra 3-4 months any day – which means I can experience my girls going to middle and high school after summer. 

I recently told Robin and my sister I would make it through 2023. The Will to Live is substantial, and I often wake up feeling nothing is wrong with me.

That brings up my next topic – Staying Motivated and Managing Self-Esteem. 

Dealing with Cancer as a patient makes you constantly juggle between short-term vs. long-term objectives. Starting with ensuring the ship doesn’t sink and, if it still does, it doesn’t plunge poorly. What is the best win-win situation? I am still struggling to find the right balance for this situation.

So while everyone is rooting for me, I still find myself alone, handling the ups and downs of the illness and the treatment and defining and managing my Coping Strategies. These strategies continuously evolve to keep my sanity intact because Cancer has disrupted my core – everything that I valued.

I am staying on top of my health – meeting multiple doctors of different specialties to manage my overall health. I am also actively scanning for medical advancements/treatments/clinical trials aligned to my condition to see if I can benefit. My looks are compromised – with no hair, eyebrows, or eyelashes. I am one of those women not affected by it, and I say this with a lot of pride, but I empathize with others who do not. There is a constant reminder to myself – that my family and friends enjoy my company because of who I am.

Every time a treatment fails, that’s a failure for me, and I do take it very personally. There will come a time when doctors can’t do anything more for me. So I have to make the best of what I have in hand. That’s when the question – WHY ME/ WHY AGAIN- comes to mind.

While I am independent and manage to do everything for myself and my family at home on my good and bad days, I depend on everyone. Those are the days when I want to give up, but then I look at the opportunity that life has presented me with, which re-energizes me to get up and continue the fight. That’s why I wrote in my last blog that I want to do that with a smile, and most days, I do.

Behind all this, remember that my self-esteem takes a hit and goes through a whole range of emotional state – anxiety, depression, anger, pride, shame, and happiness. Self-Esteem is all about how one feels about themself. I have recognized this more in the last few months and started my day by loving myself daily. I value my achievements, mental and physical strength, outlook on life, and many other things, but sometimes it is too low. Feeling useless, unable to do anything, and guilty about the illness’s impact on my loved ones. That’s when anger, depression, and shame take precedence – I struggle those hours and usually listen to my favorite songs and motivational podcasts to bounce back. My workouts those days are instant success measures because I push myself to beat my previous record or cook a fav family meal.

Though Robin and I were always best friends, it has grown even more now – there is no filter now, and I share anything and everything with him. The constant reinforcement Robin gives me helps me cope with my low self-esteem days.

It is still tough to stay motivated with limited resources – energy being a primary factor here and someone with little hobbies because all my hobbies were associated with my kids’ activities and career growth. I still find ways to stay active most days by spending time with my kids, going for their games, traveling, talking to friends and family, helping my colleagues in my area of expertise, reading news, watching TV, cooking some days, working out, planning for my following short-term goals and identifying new things that have piqued my interest recently.

Short-term goals have helped me plan and celebrate the success of meeting those goals. The satisfaction of making short-term goals and enjoying the accomplishment has kept me going. For example, my next short-term goal is to attend my nephew’s college graduation April end. I would have to travel outside of Austin to another state for it. Fingers crossed, but I do hope to be able to make it without much concern. 

How are my children adjusting to the new normal? 

If you have read my blogs, you know by now that we have been transparent with the kids. For them, I am a functioning mom, and often, they are not aware of my pain because they are away in school. I have also noticed that when they see me down, they are more willing to help Robin, and during my good days, they take advantage of me being active. I also get asked if they read my blog. My older one might read sometime, but the younger one has not. They are aware of my blog and see their pictures in it. We have been conscious about them reading the blog – I don’t force them, but they share it with their teachers or friends’ parents if a conversation concerns my health. I don’t ask them to read my blog because I know they will surely do as they grow up, and for now, some innocence around my health is good for them.

Even during my down days, if I am sleeping, they will text me about their day; that way, I am always in the loop. They have grown very close to Robin in the last two years and don’t hesitate to voice their opinion with us. At the same time, they are incredibly adjusting, with family coming over to help us out.

From food to TV options, engaging in conversations, and being flexible around the schedules. They constantly remind Robin and me about their resilience and how we start building walls around us as we grow up and become more rigid with things with age. I am so proud of them for adapting to this adverse situation without confining themselves to any boundary.

For the fear that they experience on and off, we do address it directly and indirectly. Indirectly, watching documentaries of celebrities from all walks of life who have dealt with challenging times, either by losing a parent or both parents, or having to deal with some life-threatening illness, etc. Our takeaway has always been – There is always hope, a rainbow at the end. We have to put in our best fight for that rainbow and not give up and regret it. 

There is always much more to write about kids; I will leave with this information for now.

How can Friends and Family help?

Honestly, this is something that I am struggling to respond to every time someone asks me. I am trying to take a stab at it again and hopefully bring more clarity.

When it comes to help from family, I feel terrible every time my sisters and SILs have to leave their families and come down to help us. But we are also extremely grateful that they are with us whenever we need them. I say terrible here – connect it with my self-esteem.

The help is to ease Robin to balance between his work, kids’ school and activities, and my hospitalization and treatment. Our usual expectation is plugging into our routine – which means the things that I generally do; a family member coming in and taking that up. Also, with the treatment, sometimes we are stuck at home, so with family around, it helps us disengage from the ongoing stress.

With friends, they all have been there for me on my good and bad days – laughing and crying with me, and I say this literally. Friends have been of massive help to us by taking our kids to soccer and basketball games and practices. Although my kids are now old enough to plan their playdates, thank you to all the families for supporting our kids.

Be it with family or friends; our one common ask is to walk in with a SMILE and walk out with a smile. No Gifts or flowers or anything is needed when one comes to visit me. SMILE is the only thing.

Many send me links to interesting articles, videos, positive and motivating thoughts, prayers, wishes, etc., inspiring me to continue my fight.

Every Cancer is different, and every person’s journey is unique. Just like every person’s cancer journey is different, one’s approach to knowing their friend or family member is dealing with Cancer is different. There are too many variables, so please do not compare or judge one with another.

I get asked if my friends have been the same with me after the diagnosis. While I have been fortunate with the over-pouring support, and the bonding has only increased with so many of my friends with my journey, some are hesitant to reach out, and some don’t even want to acknowledge. I respect it all because I do not know how this has impacted them and what they are dealing with for them to be quiet.

Loneliness is one of the most painful side effects of Cancer, which gets rarely addressed. Through my blogs, I pitch my story to people to understand how to support cancer patients. I want women to know how important it is to have your circle of trust, your ecosystem, and cheerleaders to help you come out of crazy situations in life. I am bold and able to transcend my problems because of my solid support group, with whom I am transparent and inclusive and engage in my small wins, so they are emphatic with positive thoughts during my bad days.

So personally, I am blessed with many friends who have been with me on this journey, but for someone else, you could be one of the few they have, and that’s why it’s integral to reach out to them. So, if you have yet to reach out to a friend going through a challenging time just because you do not know what to ask or how to approach, or if you are assuming you are not important enough – rethink. One does not always need a solution, nor should we wait for the best time or way to approach someone – letting them know you are there will go a long way. That is, at a minimum, what we can do for someone.  

All I can say is when I get messages from friends telling me they are thinking of me, praying for me, fasting for me, asking how I am doing, or sending their kid’s pic and many such messages – all these lift my spirits and make my day. It also comforts me that someone is thinking of me and will continue to do so for my family. I sincerely appreciate all those family members, friends, and messages.

Ironman Triathlon 

It will be two years in April since my diagnosis. For Ironman Triathlon, they say you must be comfortable to be uncomfortable. One gets challenged mightily. I say, the Ironman Triathlon has been on for me, and after a point in the race, when the body gives up, it is the mind game. My body has not given up yet, but my mental strength, which has a more prominent role, has been my solidity. 

The race is on; the finish line is variable with the short-term goal, but the objective is always to cross it.