Many have noticed I have been quiet or less present and some worried about what is wrong!

To be honest, last week has been incredibly rough. The post-Radiation fatigue picked up, then I started running high fevers and ended up in the ER with a major work up and scans that showed that liver looked even worse, put on antibiotics, the next day I developed excruciating pain in my right shoulder that had me reduced to tears and wails.

Then I was drugged up for pain after which I received chemo. For the past four days I have done nothing besides taking naps or respond to a text here and there. Now I have mouth sores so I have that to deal with. Tomorrow I get my second dose of chemotherapy.

It has been overwhelming to just take a pain free breath with my liver mets causing pain with every deep breath.

I wish I could say things are great but they have not been. I don’t like to post complaints on holidays when everyone is jovial and trying to have a good time but when I am quiet most assume the worse ( which this time is kinda true).

It has been a tough year. Last thanksgiving I was post-op from ovaries surgery. The new year came as I was running fevers from liver ablation. A craniotomy and many failed treatments later, here I am . The average survival with skull metastasis is 10 months ( so I am few days short of beating those odds)

Hopefully!

I am trying to keep hope and stay the course but there are times it takes the best of me. I lose motivation.

It is a lot to deal with along with being a wife and a mom. There are days the reality of my illness sinks deeper and what may happen and there are days I brush it off and go my way.

However I do notice physical decline and to deal with that I am starting rehabilitation later this week to get my strength back if I can.

This is a long bumpy road and I am thankful for all of you who are willing to listen.

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Hope is …

Lets face it. Last year has not been the most encouraging in terms of the cancer on my scans. Every scan has been worse than the one before. I was diagnosed with metastatic breast cancer in Feb on 2016 on a Breast MRI which caught the edge of the liver and it showed spots. These spots thus changed my life and my universe. I was then moved to the incurable category and labeled as the one that needed ” quality of life” discussions. I was treated first with Ibrance that kept me some what stable for 8 months or so. Then I grew metastasis in my skull bone. A daunting neurosurgery later, I was signed up for chemotherapy with THP. My tumor had changed its receptor type and was outwitting the drugs and treatment. The five cycles of THP failed and mets had progressed further. Then I was started on Xeloda, an oral chemotherapy agent. Two and half cycles of that and then scans showed even more progression. So here I am with a year’s worth of progression on my scans. I still look good. Good enough to do a shoot for a beauty company. Good enough to pass as “normal”. But I know that it this tumor doesn’t retreat, I will start looking sickly and cancerous. That is bound to happen some day but my hope is “some day” is really far off. It is wishful thinking having a disease that given an average of 3 years to the sufferers. However all my life my path has been somewhat non traditional so this couldn’t possibly be any different.

My medical oncologist was apologetic for my scans but I told him, I need to make this worth all the medical experience he had. He needs a good challenge. He is very accomplished in the field of Breast Oncology and smiled at my wise crack at him.

I am certainly not overjoyed with these awful reports and the fear is real. The fear of imminent suffering, potential liver failure and all the medical complications that I can rattle off based on my training. The first procedure I witnessed as a medical student was an ascites tap. The one where you stick a giant needle in someone’s belly to relieve the tension and drain the accumulated fluid. A common event for those who have failing livers. I know all about the symptoms, the loss of appetite, the weight loss and the jaundice. Another set of cancer cells sits on my skull so saying cancer is perpetually on my mind would not be an over stretch. I have a titanium plate in my skull already and as I joke about it, it makes me less biodegradable.

I literally live with cancer and my family. An unwelcome guest in our home. Someone who goes around messing things up, schedules, parties, activities, meals. Not leaving either. We accommodate. We put up. We endure. Me, my kids, my husband, my friends.

We are getting used to this on going intrusion and loss of control. We are getting good at winging it, of letting go or being ok with homework being a late. For the first time yesterday, I got the days wrong and missed my daughter’s conference at school. I have the cancer card but don’t use it. Its like one of those magazine subscriptions that someone gets you, and it arrives promptly every month. But you never really read it. That is my cancer card. I have too much independence yet to hide behind it. But some day I will need it.

Things in my body are changing although they cannot be seen by someone who looks at me. Fatigue is a constant companion. I try hard to stay active. Xeloda was a kill joy and I could not walk much on it because of Hand Foot Syndrome. Now that I am no longer on it, I am hoping to get back to my walking. Life is changing too. Its a constant exercise in humility. Keeping up with change and being okay with it. So far I feel I am succeeding.

I remain hopeful in a very practical sort of way. I know what I have and what it means. But I define hope in my own way. For me hope is living each day with intention ( yeah I know cliché) and purpose. For me hope is getting up and getting dressed and knowing that my life means something to others. For me hope is still keeping up with my projects and art knowing I may never get time to excel in my craft as I would have wanted. For me hope is still being interested and caring about the politics of the country and the world. For me, hope is trying to effect a change I may not live long enough to see its impact. For me, hope is keeping up with my anti aging skin cream and waiting for wrinkles which I hope I never have. For me, hope is seeing my laugh lines as a sign of life well lived. For me, hope is the little post it note from my daughter that says I am the best mom. For me, hope is a hug from my son and a kiss from my husband, a call from a friend, a bouquet of flowers and a nice smelling soap. I am surrounded by hope that comes with every morning. Hope is a beautiful thing that accompanies my gruesome reality. But I am not losing it, no I am not. Hope, some day, will be a meaningful death in the comfort of my home with peace in my heart of a life well lived. Until then it remains warm in my coffee mug and in the keys of my lap top.

Here is to hope and good coffee!

 

Messing with the wrong person?

I read the heart breaking news of Julia Louis-Dreyfus being diagnosed with Breast Cancer yesterday. She has a special place in my heart as “Elaine” of Seinfeld. I loved her character and her candid ways. I was upset to read her announcement about being diagnosed and really hope that she goes into remission soon.

She said on twitter ”

One in eight women get breast cancer, today I am the one”

So happy to see the outpouring of support for her. However what is even more upsetting is the pressure that is starting to mount on her.  Apparently “cancer doesn’t know who its messing with!”
Well here is the reality, just as breast cancer happens to people without a clear reason, through no fault of theirs, it doesn’t go away because it suddenly realized that it was “messing with the wrong person!”
Yes cancer, please look for really weak, emotionally dead and frail people to attack because you need to pick the right people. Do you realize how dumb this sounds?
The truth is that cancer does not discriminate. It happens to all ages, all genders and to rich and famous and regular people alike. I love the anthems of inspiration and the encouragement to fight but I don’t know if folks ever consider the pressure these expectations put on the person diagnosed?
John McCain who is a hero in every sense of the word, is being cheered on to beat Glioblastoma of the brain , one of the most aggressive and mean cancers out there. Look, people don’t have the power to beat cancer. All they can do is maintain peace with the diagnosis, go through treatments, cope with the horrendous side effects and hope for the best. The internally resilient cope better with the let downs that come with cancer but it does not mean that they are exceptionally qualified to “beat” cancer.
We as a society need to realize the limitations that exist in cancer treatment. There are cancers that cannot be cured. Oncologists some times are just life extenders. Modern medicine has no cure for stage four breast cancers. It is ironic that Stage 0-3 of breast cancer are in the category of warriors who will beat cancer and the Stage 4 metastatic group who is likely to succumb to the disease is considered not worthy of being the cancer poster child even though it is the group that will suffer most at the hands of cancer. And don’t I know the suffering I have endured in the last four years!  I am a physician and a psychiatrist, if there were secrets to beating cancer, believe me I would know. But there aren’t. We know of risk factors and mitigating factors but no recipe for complete success.
As a society we have gotten very confused about how to support cancer patients. We make cancer about the person who is suffering from this disease. That somehow this person has some magical personality characteristics which allows them to be that one person who defies numbers and statistics and medical data. Yes there are exceptions and super survivors who live beyond the averages. Studies are being done to find how.

I truly do understand we are people not numbers but let’s not put the burden of an outcome on the patient. When was the last time we as society forced a diabetic to beat their disease and become a non diabetic warrior? We channel our fears of cancer killing our loved ones into transforming them as magical heroes beyond ourselves so the fear of losing them abates a bit. We all know heroes win, so it necessary emotionally to make them different and superhuman.
I often am told myself, “If anyone can, you can (beat cancer)”, I feel flattered by the conviction of my friends and followers but tell you a secret, I have nothing extra to put myself into remission than another breast cancer patient. I don’t think that the 113 women, who die of metastatic cancer every day, were less of “fighters” than I.

Cancer is a vicious disease and one can stand tall in the face of it with conviction and resilience but the outcome is the draw of luck and to a certain extent, good and timely treatment.
We still don’t know for sure, why cancer recurs after many years of dormancy. There are theories and studies but none point out that it was because it was messing with the “wrong” person.
We all conclude based on our faith and personality, why we were spared by cancer or not but let’s move away from putting the pressure on the survivor to somehow change the course of a disease that they have no control over. Someday, we will know more.

Let’s support those diagnosed with cancer with love and listening. Let’s cheer them through their treatments and keep their hopes alive with encouragement but let’s not set them up to be responsible for what is so beyond their control. Cancer is an unfair fight to begin with. Let’s not out more pressure on an already burdened souls. Some succumb to cancer and some don’t. That is life, raw and honest.

14 things women with MBC want you to know!

Metastatic breast cancer is an ongoing struggle
A lot of people don’t realize that treatment for stage 4 breast cancer never ends. “I often get asked how many rounds of chemotherapy or infusions I have left, but the truth is there’s no endpoint,” says Uzma Yunus, a psychiatrist who has stage 4 breast cancer that’s spread to her liver and skull. “I will be on a medication until it stops working, and then I’ll look for the next agent that might help.”

http://www.health.com/breast-cancer/what-to-know-about-metastatic-breast-cancer#01-metastatic-breast-cancer-intro