how the bad and ugly liposarcoma looks like

Photo of the first ESTUPOR* removed in Macau on May 3rd, 2000
This ugly cystic, sotf, retroperitoneal mass was 40x40x30cm and weighed 5467g (approximately 12 pounds).

*Estupor means ugly and bad in Portuguese. It is how my dear friend Filipa calls her stupid tumors and how I will refer to mine from now on.

The rain is gone

If you live in Massachusetts/Rhode Island, you know why I am posting this video today.
Have a Happy Sunny/Painless Fourth of July.
(Yes, my pain is also gone)

blooming today

My recoveries are all like this one has been. In the hospital I recover fast and at home it takes forever. But then, finally, suddenly, there is a day like today, that I wake up feeling like my old self.

Here are photos of what is blooming and welcoming me back.

Last week

Written by Ze in his blog

It's been an eventful week: exasperating, sad, and funny.

Watching Elsa struggle to recover from surgery is exasperating. The strength and presence of mind it takes to overcome the pain, the drain and the tortuous onslaught of nausea, leaves anyone drained and realizing that one should really not make a fuss over the little mishaps of everyday life. Particularly disheartening are the moments of hopefulness, when she is feeling a little better, interspersed with the inevitable set back, when she is ravaged by an onslaught of nausea or pain. The only consolation is that it does get a little better every coming day.

Sadly, this past week, or so, saw the passing away of several cultural icons, beginning with Ed McMahon, then on an emotionally packed Thursday, a courageous Farrah Fawcett, whose battle with cancer was well known, passed away, followed by the news that Michael Jackson, the King of Pop, had also passed away.

Sad as the news were, I cannot help but notice that in one case, Farrah, there was no choice involved. Cancer comes for many reasons, some certainly aided by choice, such as cigarette smoking, but mostly due to unknown reasons, that no one can predict or prevent. In the case of Michael Jackson, however, it leaves me wondering what role the many plastic surgeries and other weird and unnecessary medical interventions and the abuse of prescription drugs, all things that were preventable, had on his eventual demise. Regardless, the impact Michael Jackson had on popular culture far outweighs the many detractors that, in the last few years, made him a far from exemplary figure. At the end of the day, not many people will live to be fifty and leave behind such an influential body of work, and for that I will miss the man.

But there was also some very funny stuff. In Nevada, Republican Senator John Ensign started things off by admitting to an extramarital affair and apologized, thus making things alright in the minds of the family values crowd. So easy. Later in the week, the Republican governor of South Carolina bested him by adding dereliction of duty to his extramarital affair, and then apologized, thus making things alright in the minds of the family values party.

It leaves me wondering if shenanigans is not the new righteousness.

Still struggling

Elsa is still struggling to recover. She's been having trouble eating as it causes nausea and pain. She looked a little better this morning, but the road to recovery is still tortuous. I think this stupidly bad weather we have been having is not helping. Filipa and Maya will both be out of school as of today so maybe this will help.

Cheers!

My Latest Maya Story

Since were are on the topic of Miss Maya, I have one of my own Queen Maya stories to share :)
On Friday of last week, while Elsa was in the hospital, Her Majesty Maya decided to NOT go to school.When I came home that day Empress Maya was the one to open the door, a great surprise to me since at the time I went to school she hadn't decided to not go yet and she comes home from school after I do.
When I expressed my surprise Madame Maya simply replied: " I took a mental health day"
"A mental health day?" I said.
"Yes, I needed one!"
"From first grade??"
"Yeah"

And that's my Dictator Maya story.

Mothers are not allowed to be sick

All mothers know this.

This morning, after another terrible night, I tried to convince Maya that grandma would get her ready to go to school because I needed to rest a little bit more. But, as I expected, Maya did not accept it.

"No. You have to do it. And besides, you are taking forever to get better," she said with tears in her eyes.

That was enough to force me to jump out of bed, get her in the shower, get her dressed, give her breakfast, pack her lunch and walk her to the bus stop.

When the school bus arrived, she hugged me and whispered:

"Now you can get back to bed and rest until I come back."

Viva mandioca

Yesterday we had a rough night. Elsa had a cough, which translated into pain due to the incision from the operation. We could not fall asleep until very late. To top is off, today, the second day of what passes for Summer, turned out to be a dreary day. It has been raining for several days and it has been rather cold. So the whole crew, Elsa, Filipa and Maya, spent the afternoon sleeping.

Tia Miete came by in the evening and brought some caldo de mandioca, which made Elsa feel a lot better. She swears by its soothing and pain releaving qualities.

Please Don't Go, dear guest blogger

Zé, if you leave this blog now, who is going to write about how the Care-Takers suffer in the first post-op week at home?

(Yes, I am old enough to remember this song, Radio Macau played it at least 10 times a day)

Sign off

So, this is where my duties as guest blogger end. Hope you all enjoyed, or at least tolerated, my rants and raves and the news about Elsa's path to recovery. Believe me when I tell you that all the comments and nice words from you really helped keep Elsa's spirits up, and contributed to her fast recovery.

Oh, and remember that you can always check my blog at www.theintentionalreductionist.com .

More importantly, if you liked my posts, do not forget to tell your friends about www.theintentionalreductionist.com and, if you did not like them, do not forget to recommend www.theintentionalreductionist.com to your enemies.

So cheers to all,

Z

Alta. Ja para casa.

Well, Elsa will leave at 1pm. The doctors are processing her paper work.

Filipa and Maya are home waiting for Elsa. This morning I made pancakes for them and my parents, who are both home taking care of their grandkids. Maya made a picture of me and gave it to me this morning when she woke me up, because it is father's day today.

Elsa is looking like she is ready to run a marathon. I am not kidding. She has on running pants and a Leonard Cohen T-shirt, and is ready to take off.

All in all, this stay (besides the disaster of the first day) went really well. She recuperated fast and well. The nurses were (the rotten apple aside) all really nice, like they usually are.

Danka Brigham and Women's.

steps to get home

The pedometer says: 2671 steps.
And the doctors say that most likely I'll go home tomorrow.
Yayyyyyyyyyy
Good Night.

Saturday visitors. Surprise, surprise! Guess who was waiting for us in the lobby when we arrived at the hospital today. Since arriving, they took out her epidural and is now one step closer to going home.

It is me posting. Zé is home trying to get Maya and Filipa ready to come visit me.

This morning I got disconnected from my IV and my epidural and that feels great. At the moment I am only connected to the foley and the internet, off course. ;-)

They put me on a liquid diet. I really hate the liquid diet from the hospital. It consists of things that I never drink when I am doing fine, imagine how it feels in my stomach right now. I have only been able to eat a little bit of yellow jello. But I have asked Ze to bring me a broth made of manioc (mandioca in Portuguese, yuca in Spanish).

My oncologist from Dana Farber stopped by to see how I am doing. I confess that I was feeling a bit anxious before his visit. I was thinking how sick I am of being sick before his visit. But Dr. Morgan has a way to erase all my fears and always brings a smile to my face. And most important of all, gives me hope that we will beat this together.

If my intestines do what the doctors want (if I answer yes to the famous questions: have you passed gas?) I will go home tomorrow. The only way to wake up my intestines is to walk walk and walk. I brought a pedometer with me (later I'll do a post of what to pack when you are hospitalized due to surgery) that I just used. My pedometer is saying that I took 999 steps this morning.

Right now I am going to drink this tasteless chicken broth that I have in front of me.

Our nephew Francisco, Elsa's little Francisco, a student at Northeastern University (how did that happen?) came by and took some pictures of Elsa in his professional Nikon super dooper camera. He is a Graphic Design student, although his pictures are more interesting (my opinion) than any graphic design I've seen.

I think they do a great job of capturing Elsa's smile.

Smiles

Why the smile?

Well, besides the fact that Elsa thinks the doctor is cute, the NG tube came out. According to Elsa, it was the best NG tube removal, like, ever.

This is typically when things will move fast towards a quick discharge from the hospital.

Yeah!

I just arrived at the hospital. Had to go to work today to take care of some business. It's raining outside, the day is rather dreary, but Elsa is not going along. She is doing great. By the time I got here she had already walked and they had the NG tube still in but unhooked to see if she can tolerate not being with it. Her nausea is much better. She went for a walk with me and I took this picture.

This improvement may be coincidental but she does have a different nurse today. This one actually has a personality and talks to you and tries to find out how you are doing. It's been thirty minutes since I got here and she has already seen Elsa more times than the other one saw her yesterday. I am glad for that. All patients really want is to go home, and Elsa does not really ask for much, so I could not understand the philosophy of the one she had yesterday. I think nurses have a very difficult job and they deserve all the recognition they receive and perhaps even some that is never given them. This makes me think that not everyone should become a nurse. If you are not interested in helping people, you should not become a nurse. Those that violate this and do go into nursing do everyone, themselves and their patients, a great disservice.

For now, I am just glad that Elsa is doing better and that you all continue to comment. It makes her feel a lot better.

Cheers,
Z

hello.
I am feeling a little bit better. Just want to say that I love you all.

Cleaning staff

They did not change Elsa's bed sheets all day so a little while ago, I did it myself.

I think this still is in accord with my 8-33 theory. You see, we will never want to come to the 8th floor again, and that is a good thing.

Comments

I have been reading all the comments to Elsa. They have been the only elixir for her constant retching.

This and Mary. She is Elsa's roommate's nurse but she took the time to sit and talk to Elsa, flush her NG tube and show some interest about Elsa's condition. She even commented on Elsa's gown and now has managed to spend more time with Elsa, in the last twenty minutes, then Elsa's supposed nurse has spent in the last eight hours. Encroyable! The thing is,
I think this is mostly due to the fact that she is totally inept. She has learned the moves a nurse makes, but not how to be a nurse.

In any case, Elsa felt better after talking to her and I am carping so I'll stop here.