I’m Still Here! But the Cancer Isn’t!

Lest you think Our Philly Row has gone the way of the Dodo bird, I’m Still Here! But the Cancer Isn’t! Woo Hoo! Gosh, where do I begin? First, I’ve been wanting to write this post for long while (I did my first draft in early January), and it is way overdue but here I am. Sorry if I kept you hanging. Warning, this post is not about the house, but about me and my health, and it’s a bit long (sorry, not sorry). But, stay tuned, there are house posts forthcoming, I promise…. The end of this post will touch on the upcoming projects, and what’s next.

While it may be late February, I can say that 2020 is so far going better than 2019. Last year was a very difficult year for me. I always try to see the brighter side of things, but last year was filled with loss, sadness, depression (or what I thought was depression), and serious health issues. 2019 was also filled with gratitude for all that I have, and for those who are in my life. 2020 is a new year, and I am (literally) a transformed person in many ways, all unexpected.

The year started out just fine. I was making plans to work on the master suite as well as figuring out the parlor. I finally found the color I wanted for the parlor walls (and it wasn’t what I was expecting). But then at the end of January, my Mom died unexpectedly, which set off a chain of events resulting in my difficult year. After losing Mom, I fell into a funk (which is not unusual) and found myself lacking interest in working on the house.

Then as spring arrived, having accomplished almost nothing on the house, I began to suspect that I was depressed (something I have dealt with at various times in my life). My energy level had plunged, I found every time I would start working on something, I would get very tired within 20-30 minutes and spend the rest of the day wiped out and on the sofa. As the months wore on into summer, the general exhaustion only got worse. In early August, I got started on demolition of two 1980’s closets in the future master suite. I found that within 15-20 minutes of starting to work, I was wiped, pooped, and found myself just taking a nap. I was so perplexed. Why can’t I do something that should not be that hard? I didn’t even have the energy to clean up the sheetrock on the floor (it is still there).

 

Simultaneously, in the spring, I had begun to notice that I was having difficulty swallowing during meals requiring me to drink large amounts of water every meal to get the food down. Then at the end of August, after a few visits to specialists, I had an Endoscopy and the doctor ran into a large tumor in my esophagus just above my stomach. The biopsy came back positive for cancer. Holy Crap! I have cancer!

The next 15 days were a blur… Multiple tests, multiple doctor appointments, and coming to the understanding that I had cancer of the esophagus. So much happened in such a short period of time, which in hindsight, I am grateful for. My medical team was on top of it, and wasted no time in getting me in for treatment.

Suddenly, it all made sense… I wasn’t tired because of depression or sadness, I was tired and exhausted because I had cancer. Duh! This damned tumor inside was sapping all of my energy and causing me to be exhausted much of the time. I immediately stopped beating myself up for laziness and felt exonerated for not being able to get things accomplished. I probably did experience some depression after my Mom passed, but that wasn’t what was slowing me down for almost the entire year.

Cancer is Hell… Good Riddance!

So as to not bore you to to point you never come back, I will be as brief as I can (which is still quite wordy, sorry). In late September, I started five weeks of radiation (25 sessions) and five weeks of chemotherapy (once weekly). Following radiation and chemo, I spent the next few weeks feeling much worse than I had ever felt before in my life (fairly common after chemo and radiation). I experienced endless nausea, muscle weakness, exhaustion, and so much more. Finally by the end of November I began to feel better.

As it happens, back in August on the day before my diagnoses, I purchased airfare for my Father to visit during Thanksgiving week (the timing could not have been better). When he arrived a few days before Thanksgiving, I felt pretty good. The tumor had shrunk and I was drinking less water than before to swallow. Thanksgiving Day was wonderful. My in-laws came in from NYC, and the five of us went to dinner at a nice restaurant in Center City.

I had the turkey dinner, with all the accompanying sides, and two glasses of wine (I was not driving). Little did I know that meal was to be the end of an era in my life. The same day my father arrived, I received notice that my surgery was scheduled for the following Monday. And by pure coincidence, my Father was not scheduled to return to California until Tuesday the 3rd. So he was able to be at the hospital during my surgery and see me afterwards (of which I only have vague memories).

 

Surgery was supposed to be six or seven hours, but complications stretched it out to eleven hours. After which I was moved to ICU for recovery. (Sorry if the following is too graphic). I had an Esophagectomy with Gastric Pull Up. Essentially, they removed the lower half of my esophagus (including the cancerous tumor) and the upper half of my stomach along with the valve between my stomach and my small intestine. They then reshaped the remaining stomach into a tube and connected it to the remaining esophagus (I will explain more below). I only had four tiny incisions in my belly and two on my right side. I’m told the entire procedure was done with robots, however I cannot confirm as I was unconscious at the time.

The next eight days were spent in the ICU where I had a really nice large private room, and shared a nurse with only one other patient. I was tended to quite well, but much of this time remains a blur. Most of my days were spent sleeping, dozing, and pushing the button for more pain meds. I was on multiple IV’s, and not able to eat or drink for a week. My only respite was that I could suck on a sponge dipped in ice water every few hours. It was agonizing… I was so f’ing parched! All I could think about was water.

Finally, seven days after my surgery, I had a contrast scan and I was approved to have water. They also began to bring me liquidy foods (broth, yogurt, juice, etc…). I remained in ICU until the the night before my release when I was moved into a regular room. It was only when I got home that the reality of all of this began to sink in (and continues to sink in).

Learning to Live Stomach Free…

To say this has been life changing is the biggest understatement of my life. For all intents and purposes, I no longer have a stomach. Think about that for a moment… I have no stomach. Crazy right!?

 

How does one live without a stomach? Well, I am still learning. Basically, I have to learn an entirely new way of eating for the rest of my life. Not having a stomach means I need to eat six for seven tiny meals a day. About every two to three hours from the time I get up until an hour or more before I go to bed. When I say tiny meals, I am talking 3-5 ounces. Often less than half a cup of food. And because I have no stomach, liquids take up the same space as food, so drinking more than a sip of water during a meal means less room for food.

I say all this because those who know me personally know that I have always had a battle of the bulge. What can I say, food is delicious! But now I am faced with a very different reality, getting enough calories in each day. Because I have such limited room for food in my gut, I have to be very judicious with what I eat. I have lost a lot of weight (50lbs since August), and because I cannot overeat, I will probably never be the large person I’ve been for most of my adult life. That said…. I cannot say I am upset about the idea of being a smaller person. I am down to a size large t-shirt and am thrilled that my fashion options have greatly increased.

While the notion that I will be more normally sized is amazing, the flip side is accepting that I will never again be able to just sit down and enjoy a full meal at a restaurant with a glass (or two) of wine. Basically, I can eat a third to half of a portion, and rest goes home. I have been trying to rethink how I will handle this… Perhaps I will just order an appetizer as a meal, and a Jameson on the rocks as a drink (which works out to 1.5oz of booze). But what about wine? Good question….. In the past, drinking a bottle of wine over the course of an evening wasn’t a big deal. But an opened bottle of wine doesn’t keep long. Now I wouldn’t even think of opening a bottle of wine at home without others to help me finish it. My beloved wine will probably become a beverage I have on occasion with lots of planning.

It’s been nearly 12 weeks since my surgery and I can still feel discomfort in the area where they did the work (although it is very tolerable). The nerve endings are still reconnecting so my belly is all tingly. I can still get tired and winded quickly, but I am walking 30 min a day on the treadmill. There’s still the chronic post surgery cough which I am told will go away (I hope!). And most recently, I have developed some new issues involving my thyroid in my neck, for which I had a biopsy yesterday and expect the results next week. From what I’ve been told, thyroid issues are common after chemotherapy and are often chronic, but treatable. I’ll take that over cancer any day!

At the moment I am to be considered cancer-free and have a follow up with my doctors at the end of June to confirm that continues to be true and, fingers crossed, beyond an annual endoscopy, I should have my life back…. Just a bit differently than before.

 

One more big change for me is that I am not supposed to be upside down, or lay flat to sleep. Because there are no valves to stop bile from coming up from my intestines, I am at high risk of Pulmonary Aspiration, a condition in which food, liquids, saliva, or vomit is breathed into the airways causing me to choke.  I must sleep with my head elevated, even bending over to tie my shoes can result in digestive fluids flowing into my throat. I first tried one of those foam wedges, but kept slipping down the bed each night. So to resolve, we invested in a split king adjustable bed, with each of us having our own mattress. This way I can elevate my head and my feet as well as get a magic fingers massage all from the ease of a remote control.

Gratitude to the Max!

With all that has happened, I have so much to be grateful for. My medical team, the doctors, nurses, and support staff at Jefferson University Hospital in Center City Philadelphia were amazing and took great care of me. I am very thankful that we have insurance for the nearly $300k in costs incurred in a mere four months. I am grateful for the love and support of friends and family who reached out to me, sent me flowers, visited me in the hospital, and kept up with regular texting. Above all, I am endlessly grateful for the constant care, support, and love from my amazing husband Yoav. I cannot imagine having gone through this as a single person.

 

All that said, I want to say THANK YOU! to all of my dear readers. So many of you reached out to me, left me comments and well wishes, both here and on my Instagram @ourphillyrow. It is very comforting to know that strangers can care too. All this reinforced my knowledge of just how fortunate I am to have everything I have.

 

As for the house…..

Well, now that I am getting my health back, I am super ready to re-focus my attention to the house. Whats happening right now? Well if you remember, last fall I did a post on our staircase. I am excited to say that the Staircase Restoration Project has begun! Last week, a team from R&B Restoration Carpentry began the arduous process of restoring our 167 year old staircase. We are super excited to have this first phase of the staircase restoration project started. I am working on an upcoming post about this, but in the meantime you can see some pics and view saved stories on my Instagram @ourphillyrow.

Other project statuses are as follows:

Master Suite: This was supposed to be the big project of 2019, We still plan to get to it but have decided to get some lower hanging fruit taken care of first.

Parlor: This has been moved up in priority because we just want to have one nice room completed. Every room in our house aside from the temporary lipstick on a pig kitchen facelift is in chaos. We want one room which we can retreat to that is mostly done and the parlor is it.

Vestibule: This is a tiny 3’x5′ space which should be an easy job and will have much impact when entering the house.

Reception Hall and Staircase: Once the restoration of the staircase is complete, we plan to hire strippers to come in and strip the multiple layers of paint on the staircase from the third floor down. After which the treads and handrail will be finished wood, and the rest will receive a fresh coat of new paint.

Door Stripping: It is my goal to strip every original door in the house down to wood and finish them. I want to set up a spot in the basement to work on one door at a time. I hope to have finished wood doors, but if after stripping they are not amenable to being finished wood, I will prime and paint.

Whole House Air Conditioning: Not a sexy thing, but necessary. This will be incorporated into the master bath project because it just makes sense to do it then. We will also incorporate new hookups for the laundry in the basement, a new utility sink in the basement, and plumbing for a utility sink (and future bathroom) on the third floor in my studio.

There are also dozens of small projects which I want to get listed out with completion goals.

So, stay tuned… More to come!

Wait!… One last thing….

My soon to be 81 year old father lives alone in Sacramento (all family has either passed away or moved away over the past 30+ years). He has been active at this church since the 1940s, and stays busy with a daily coffee group at a local Peet’s and he has been involved with a model railroading club for decades. I am proud of how well he has adapted to not having my Mom around. That said, we do a daily check in via text and it brings great joy to me when he sends me adorable hearts, hugs, bunnies, and more. We weren’t always close when I was young, but I am so grateful for how deep our relationship has become over the past few years. Love you Dad!