Houston & MD Anderson

AKA returning to my roots in more ways than one

For years, I've been a bit of a roamer - going where the wind takes me. I don't know where the itch to travel and explore came from, but it's been there, under my skin, a very real, very alive "thing" for as long as I can recall. Regardless of where I've traveled, home has always had a dual meaning for me. It has been both where I'm living in the moment but also Houston. My sister and I refer to our parents' home as "home home" to help distinguish from our day-to-day residence aka "home". Knowing that family and a sense of stability exists in Houston has made it so much easier to be a wanderer for all these years.

And so when the big "C" made its grand debut in my life, it was only natural for me to come "home home". And what a fitting place to be. Aside from being close to family, Houston is also home to MD Anderson Cancer Center, one of the foremost cancer treatment centers in the world. And in another return to my roots, MD Anderson happens to be the place where I volunteered at as a high schooler for several summers in a row. While its since expanded quite significantly, knowing that my care is taking place at a facility I'm at least somewhat familiar with provides a sense of comfort that is difficult to quantify.

Finding myself on the other side...

As a teen volunteer, I was always impressed with the grace, resilience and good humor so many of the patients I encountered displayed. Now being on the other side of the table, my admiration for those individuals has increased at least tenfold. If my own irritability and tiredness (directed towards my family, naturally) are any indication of the journey to come, then I can only imagine the reservoirs of strength and patience that these individuals were drawing from.

For myself, I started a series of appointments at MD Anderson beginning on 11/14/2017 focused on determining if the cancer had metastasized from my right breast and to also introduce me to the multi-team of doctors I'd be working with. Despite the amount of sitting and waiting involved in each of these days, I am usually entirely drained by the end of it. The emotional roller coaster each day is taxing, and for someone who hates not being in control of her emotions, it is vexing as well. A vexed Reema does not a friendly/considerate/cooperative Reema make (much to my Mom's chagrin).

I pride myself on being able to snap out of an emotional funk fairly quickly. But when the news and information to learn come pouring in and decisions need to be made quickly, managing the emotions that arise becomes secondary. It also means that by the time I'm "free" to deal with the emotions, my reserves of energy are used and I'm a surly mess. Being an introvert also typically means that I want to just be left alone. I sound like I'm a real joy to be around, huh?

Tests and research and news

Moving care so quickly after my initial diagnosis meant that there was quite some coordination that needed to take place between my initial place of care in New Jersey and MD Anderson in order to transfer biopsy tissue samples, test results, CDs of imaging, and more. In the meantime, there were still a number of diagnostic tests to be run in order to establish whether the cancer had metastasized or not, and to establish the biomarkers of my cancer. Between 11/14/2017 - 11/21/2017 (excluding weekends), I had the following:

- Mammogram

- Ultrasound

- Full day introductory appointments with my multi-care (medical oncologist, breast surgeon, and radiation oncologist)

- Full body PET scan

- Brain MRI

- Breast MRI

- Follow-up appointment with my medical oncologist to discuss chemo options

- Biopsy

- Echocardiogram

These don't include the number of vials of blood drawn, the number of IV lines set-up, the number of informed consent disclosures I've been asked to sign, and more. To MD Anderson's credit, every person I've interacted with has still made me feel human first and a patient second (and never a number). But I've also honestly never looked forward to Thanksgiving as much as I did this year. Besides selfishly demanding that my family actually make a proper Thanksgiving meal, it meant a reprieve from the information, the appointments and from being poked and prodded.

Please know that I don't list everything above as a complaint, but rather as an illustration of just how exhausting this process can be. I have the benefit of having friends and family who are physicians and who have been able to guide me and advocate for me along the way. My previous exposure to MD Anderson also means I'm not overwhelmed by the general idea of large hospitals, cancer, chemo, radiation and some of the language around cancer. I can only imagine what someone without this support and prior exposure goes through when learning they have cancer.

Even for myself, it can still feel a bit like drinking from a fire hose. It's also a delicate balancing act between remaining optimistic while recognizing the reality of the situation you're in and digesting the good and bad news that comes along the way. I can't hide from the fact that my minimum diagnosis is Stage III and that I have the equivalent of an "orphan" cancer with limited research behind it. In terms of news, I've learned that the cancer hasn't metastasized to my skin (YAY!) in the same moment that I learned that I'm triple negative on my biomarkers (bad news bears). I've been told that my diagnostic tests look good (I'm probably Stage IIIB) but that yet another diagnostic test is needed for one teensy, weensy thing they want to double check (holding my breath again).

And news of course takes you to the wonderful world of the internet. Like all advancements, the internet is both a boon and a bane. Without it, I would never have been able to learn about IBC so quickly and pursue diagnosis in short order. But there is certainly a large, very deep rabbit hole of "information" just beckoning. Having wandered into the shallow end of some of the messaging boards has been enough to make me turn tail and run. I've quickly learned to limit myself to specific questions (e.g., what type of personal care items are helpful while undergoing chemo) rather than reading through messaging boards at will.

I'm not going to lie, the temptation to read those boards is certainly large, especially for someone as curious as I am. Knowing more makes me feel like I have some semblance of control over this crazy process. The reality though is that more knowledge of the facts (e.g., chemo sucks balls) isn't really going to prepare me for what's to come. Some things are simply meant to be experienced.

But I suppose that's true of life in general, huh? One more diagnostic test on Monday, 11/27/2017, here I come!