Tuesday, June 30, 2009

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.

Sunday, June 28, 2009

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.

Thursday, June 25, 2009

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!

Wednesday, June 24, 2009

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.

Tuesday, June 23, 2009

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."

Monday, June 22, 2009

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)

Sunday, June 21, 2009

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.

Saturday, June 20, 2009

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.
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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.

Friday, June 19, 2009


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

Thursday, June 18, 2009

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.

Amy and Tarsha, from Dana Farber, came by while I was away. They helped Elsa put on one of her hospital fashion creations and made her stand up for a while. It's the first move you have to make on the way to going home- getting up.

The diloted has been removed from Elsa's cocktail so she is feeling less nausea, but any exertion still causes it to come back.
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Diloted = Nausea

The pain doctor's came by and decided to remove the diloted from Elsa's pain cocktail. That is the most likely reason she is feeling so much nausea. Elsa just remembered that last year they had to take it out too, because it was causing her so much nausea.

Day 2 early morning.

Not bad eh! This is how I found Elsa this morning. She has been experiencing some nausea, but otherwise it's been fairly uneventful. She does not feel any pain, even though she has not been using the pain cocktail they have her hooked up to. They did not have her connected to oxygen this time, so she only has the NG tube connected through her nose. This is usually the main reason for her prolonged discomfort, so hopefully she will be able to get rid of it soon.

The hospital installed a new paging system for nurses. Before you would press a button and an assistant would come and ask what the patient needed. Then, if it were necessary, a nurse or a doctor would come. Now, you press a button and some person in the nurse's station answers the call and finds out what the patient needs. Sounds good, except the system sucks and it is hard to hear what the person is saying through the speaker and, Elsa's case, when the patient has a tube through her nose, it is hard for the patient to speak so the attendant does nor hear.

So, even though Elsa had been asking for nausea medication since 5am, it was only after I intervened when I came in at 8am that it finally became clear to the attendant that if a patient has a tube through her nose then it will be hard to hear what that patient in saying. What amazed me was that the attendant never actually bothered to take the ten steps necessary to see what was going on.


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Wednesday, June 17, 2009

In the room

Elsa is already in her room. She is doing great. I already showed her all my entries and read all the comments to her. She enjoyed them very much.

Cheers,
Z

Blogger Fuel

Just saw Elsa. She is doing very well so I came down to Au Bon Pain to re-fuel. I ordered a palmiere, French Roast coffee and a fresh fruit cup. It's what I call a balanced blogger meal.

The nurse said that Elsa was doing well, but complaining of nausea, so she was going to keep her in the recovery room until she felt better. I will go again in an hour to see how she is doing.

The anesthesiologist came by and said that the tumor was the size of a medium cantaloupe, but that it had come out easily. Elsa lost some blood but did not require a transfusion.

The anesthesiologist is Chinese and Elsa is going to the 8th floor, room 33. Wow! Right? Is there a more auspicious indicator that things will turn out well than that?
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All went well

Just finished talking to Dr. Bertagnolli. She was very happy with how it all went. It was, according to her, the easiest one so far. Both the larger tumor and the small tumor that was hiding deeper inside came out easily.

Now I have to wait one hour so that I can go see Elsa. The doctor said that Elsa should have a quick recovery, so Elsa is going to be happy to hear this.
Elsa at pre-op June 17, 2009.


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Surgery Day

It's almost 1:30 pm and I just managed to sit down for some food. I left Elsa at pre-op at around 1:00 pm. She was supposed to have surgery at noon, but things got held up so it was only at noon that she actually made it to the pre-op room.

Everything went as routine. She was a little anxious and tearful. I think mostly because this is all deja vu for her. The doctor's and nurses all came around to meet her and to ask those questions that they ask, over and over again. "What are you having done today? What are you allergic to? What is your birth date? What happens when you take Bactrin? etc." The only relaxation was when the reiki nurse came by. She did a reiki session for some twenty minutes., which left Elsa relaxed and a bit giddy. It only lasted until the anaethesiologist came and then it was back to reality. They finally kicked me out when it was time to place the epidural.

After I turned on my cell phone again, I got a message from Filipa. She was not feeling well and so went to the nurse's office. I called the nurse but Filipa had rested and gone back to her last period class. So now I am worried about Elsa and Filipa.

While I was in the pre-op with Elsa, I took some pictures, which I will try to post later. Elsa also wanted me to get the velcro she brought for the surgeon to place in her belly so that it will be easy to take out any new tumors after this surgery, but I felt it was just one tiny bit far of silly so she ended up not getting the velcro. I am sure I will never hear the end of this, so I am going to have to learn to deal with it.

I am going to finish my lunch now and wait until Filipa gets out of school so that I can call to find out what is going on with her. I think both her and Maya were a bit nervous this morning so hopefully that was all. Then I am going to wait the three hours it usually takes for her to finish her surgery.

Cheers!
Z

Tuesday, June 16, 2009

Brave Woman

Tinhas-me contado horrores da mistela que te obrigam a emborcar antes de cada intervenção. Sempre sofreste por isso, e chegaste a dizer-me que era o pior de tudo. Hoje quis ajudar-te, acompanhando a tua penosa ingurgitação em directo e ao vivo, via video-chat. Era crucial saberes que essa não era a cicuta de Sócrates, mas a seiva que salva (tu sabias, claro). Deste lado, Barenboim tocava então Beethoven, e subi o som para que a sonata te servisse de lenitivo, juntando-se à tua peónia, cujo aroma aspiravas. Foste corajosa, a Elsa que adoro, a minha heroína – que tu és há muito. Os snapshots mostram quanto te custou, mas pelo meio houve o teu sorriso, a que nada se compara no mundo – e é ele que sobretudo retenho. Um bom augúrio para amanhã. Good night and good luck. Beijo.



(posted by Joaquim Vieira)

the day before


Today is that lovely day. The Bowel Prep Day.
The good news is that I DON'T have to drink the TWO liters of that halflyucky stuff. Instead I am drinking a 296ml bottle of Magnesium Citrate (Thanks Bob). I'll let you know how it goes.

Saturday, June 13, 2009

o trambolho


o jardim





My garden is feeling abandoned due to my attempts to become a steamstress.

Wednesday, June 10, 2009

Hospital Fashion

I have been busy designing and making the ideal patient gown. If you are wondering why I can't just take my regular sleepwear or why I don't want to wear the hospital gown here is the reason.
(photo from surgery #7, day 3)

In my design I had to consider that I wake up from the surgery with the following:

Arterial Line
Central Line
Epidural Catheter
Foley Catheter
Heart Monitor
IV Line
NG Tube
Oxygen Pump
PCA Pump
Pneumatic Boots
Pulse Oximeter

... and the doctors and nurses need to have easy access to my body.

No wonder the "one-size-fits-none" hospital gown has been around forever and no one has tried to change it.

"Medical historians believe the current gown evolved from nightshirts patients wore in hospitals in the 1800s that were slit open in the back. Variations of the current style have been in use since at least the 1920s." If this topic interests you (hopefully it doesn't, because you have never been hospitalized), read the entire article from the WSJ here.

Monday, June 8, 2009

ursus americanus

A black bear has been spotted on our road. The police is warning that the bear is looking for an easy meal. To reassure Maya that there is nothing to be afraid of I looked for information on what black bears like to eat.

About 95 percent of the black bear diet is plant-based and includes roots, buds, nuts, berries, fruit, clover, dandelions, and wild oats. The remaining 5 percent of their diet consists of the larvae of ants, bees, and hornets. Black bears are relatively ineffective predators, and seldomly capture larger prey. On rare occasions, they catch fawns, moose calves, and beaver.

oops I think the black bear is not going to leave my back yard. I have most of what the ursus americanus likes.

(Maya: all your other questions can be answered here)




Maura's story

Sunday, June 7, 2009

Dear friends,
Thank you for all the comments and messages you have written to cheer me up. They worked. I am back to my normal self.

Usually my surgeries take place just two or three days after I find out that I need one. The great advantage is that I don't have time to think about it. This time I have extra time to google liposarcoma surgeries on YouTube... don´t try it.

Maya is keeping track of how many days I have left. She is telling me, right now, that I still have eleven days until the surgery. I am exercising, resting and eating well. The internet says it helps. My friend Michelle is also getting ready for her sarcoma surgery. I am glad she heals as well as I do.

My next 2 weeks will be filled with juicing, cleansing and eating really well. I heal so well and want to be in great shape going into this surgery.

Yesterday we ate the first salad from the garden.

With lettuce, watercress and every herb I have growing: oregano, thyme, parsley, mint, basil, sage and chives. I covered the salad with lots of tumeric, black pepper and olive oil (a combination that many say is a good ally in this battle).

I wish my mother or tia Pilar lived closer to help me with my hospital pajamas. I'll show you the end product when I finish it. Yesterday I bought fabric and Velcro. I am only using the white Velcro, the skin tone Velcro is for my surgeon. It will be this time that Dr. M. B. will put some Velcro on my incision.

Today, I am going to the beach. I need to dive in the (cold cold) Atlantic.

Abraços

Friday, June 5, 2009

Comfortably Numb

I disagree, . I am not sad. I am just numb.
I have become comfortably numb ;-)

Numb or not, I am thinking of designing and making my own hospital gown. If you have been hospitalized you know what I am talking about.
.

My main complaint is that besides not being comfortable the gowns are too big for me. Tomorrow I am going to a fabric store. I found inspiration here.

What Elsa's doing.

Since she assigned me the task of updating this blog, Elsa has not done so herself. Her surgery has been re-scheduled for the 17th, which is when I was supposed to start my updates, but now she wants me to post even before then.

Well, for the past couple of days she has been sad, not wanting to do anything, but today she went to the garden and worked some. A good sign, since the weekend is upon us and it will be a drag if Elsa is not in a good mood. Oh, she also went to Maya's school and planted some flowers on the kid's garden and then she stayed on adding the Elsa touch to the rest of the garden.

Now, it's raining and in return for me writing this post she is making some Capeverdean cuscus. My stomach is grumbling in anticipation.

Cheers!

Wednesday, June 3, 2009

Another one

We found out today that Elsa will be having surgery on the 18th. Almost exactly one year since her last surgery, after several drug trials, including weeks of traveling back and forth to New York City, it ends again with yet another surgery.

So again we are mustering our strength to face the ordeal that accompanies each surgery. The anxiety before the date, the prep before the surgery, and then the recovery in hospital, dealing with pain and angst.

Yet, life goes on and it will soon all be water under the bridge. There is no choice in the matter, so, as in every other of her eight previous ones, we will face it head on, trying in every way to minimize the preoccupations that add nothing to the outcome and therefore are relegated to the realm of forgotten thoughts.

Elsa, as always, is facing the news with the same strength and resilience that she always displays when this disease throws set-backs her way. There is, of course, a little crying, some anxiety, but it is all transitory. Soon her enthusiasm for life takes over and she begins to look forward to another vacation from the trial drugs and probably in Portugal? Macau? India? Who knows. I only find out days before she makes up her mind.

Anyway, she has nominated me the interim major contributor for the time that she is hospitalized so count on me posting regular updates on what's going on.

Cheers all!

Let's get rid of it!



I saw my dear super-surgeon, Monica Bertagnolli, this morning. The bigger tumor moves, which is always a good sign (it means that it should be easy to remove it). We are getting rid of it on the 18th.

Tuesday, June 2, 2009

She is gone

From across the street, Trudy's nest seemed occupied. So I thought that she was still sitting on top of her eight (or nine) eggs. But when I approached, with my phone camera, I had a surprise.


I smiled and thought that the eggs had hatched, the proud octo-mom had left with the young turkeys and someone put the silly ducks on her nest. But when I was getting my vital signs, at the CRC, Cheryl told me what happened last week:

- Someone alerted the Environmental Police, the officers came and took her. They released her somewhere and did something to her eggs.

- So they relocated her and are having her finish "her pregnancy" somewhere?

- Do you really want to know what they did to her eggs?

- Yes.

- Someone told me that they destroyed her eggs because the turkeys are invading Boston.

I didn't believe Cheryl. They can't destroy eggs that are almost hatching. That can be considered a late term abortion, right? So I chose to imagine that Trudy was relocated to the country and was missing Binney St...

... when I went to the Dana building I met Kerry. A nurse from Dana 1 that recognized me as the (red shoes) blogger that is following Trudy ;-). I told Kerry that I was thinking of calling the Environmental Police so she told me that one of her patients had called. And yes it was true, they destroyed Trudy's eggs.

(David, thank you for sending me this photo. I don't know who took it to give credit)

When we take the case to the Supreme Court, the Environmental Police will know that Trudy was not just another wild turkey ;-)

Meanwhile I have news on the liposarc. The CT scan I did yesterday confirmed what is visible to the eye. I am off the trial.... I will tell you more after I see my surgeon.

Monday, June 1, 2009

If It Be Your Will



If it be your will
That I speak no more
And my voice be still
As it was before
I will speak no more
I shall abide until
I am spoken for
If it be your will

If it be your will
That a voice be true
From this broken hill
I will sing to you
From this broken hill
All your praises they shall ring
If it be your will
To let me sing
From this broken hill
All your praises they shall ring
If it be your will
To let me sing

If it be your will
If there is a choice
Let the rivers fill
Let the hills rejoice
Let your mercy spill
On all these burning hearts in hell
If it be your will
To make us well

And draw us near
And bind us tight
All your children here
In their rags of light
In our rags of light
All dressed to kill
And end this night
If it be your will

If it be your will.

My Leonard and his superb band

Suzanne

Democracy


from
Leonard Cohen
Live in London 2008 (DVD)


sorry, I am still under the Leonard Cohen spell...

Leonard Cohen in Three Acts

If you like Leonard, don't miss this recent interview.
Since I can't figure out how to get it embedded, here is the link:

CBC.ca | The National | Archive | Arts | Leonard Cohen in Three Acts