Home from Hospital

Came home from the hospital today. The doctor came to see me in my hospital room before I checked out. He said the surgery went well. He said I’ll go home with the drains but they can probably come out after 5 days. On the right side - just under 50 ml. Left - about 10 ml., not even enough to cover the bottom of the drain container. I asked about smaller drains, but he said the suction’s not as good so keep the ones I have.

I feel just fine. No pain or discomfort. Just a bit inconvenient to carry these bloody drains around. And I mean “bloody” literally, not as an expletive.

The cytology report for the blood taken last week showed no cancer cells in the bloody fluid. What a relief!

I was worried about how Josie would react to seeing her mom with tubes of blood coming out of her body and into a plastic container. She looked at the barrel-shaped containers, which were only filled a little bit, and said, “Mommy, why did you drink it all?” And then she didn’t take any more notice of it. I guess a 3-year-old doesn’t know yet to be scared of blood. The first time I saw a woman with drains at the doctor’s office, I was shocked and immediately felt sorry for her. Kids are so much better at handling this type of thing. They’re so amazing.

Surgery Number Two

Checked into the hospital at 6:30 a.m. for my 8:30 operation. Was back in my hospital room by 10:30 a.m. Chest is completely flat now - no more pockets of blood. Never thought I’d be so happy to have a flat chest! There’s very little blood in the drains -- about a tablespoonful on the right side and none at all on the left. I feel no pain, except my throat, which feels a bit sore. The nurse said that’s due to the anesthesia down my throat (Did she mean a tube?) during the operation.

I have feeling back in my right inner arm and armpit area. That area had gone a bit numb before, probably due to the fluid build-up and tension on the skin as a result. The surgeon came to see me after the operation and said everything went well. He cut open the old mastectomy scars and scraped out the blood clots. He said I can be discharged tomorrow. Yay.

Pre-Surgery Check

Went back to my mastectomy surgeon to have the dressing on my skin lesion changed before my surgery tomorrow. We noticed the drain had dried up -- the tube was empty and dry. The doctor said to just leave the drain in place until my surgery tomorrow to avoid any risk of infection. He said he’d write a note to my new surgeon to give him background on my condition before the surgery.

Had a “bleeding time” test done. They prick your ear with a tiny sharp knife and see how long it takes for the bleeding to stop. The result was normal -- 1.5 minutes. So that’s more evidence that there’s nothing wrong with my blood-clotting mechanism and it’s not a systemic problem but a local problem that can be fixed with surgery. Good to know, since I’m going under the knife tomorrow!

Going for Another Opinion

After a week of going back and forth between my surgeon and my chemo doctor, we came to an impasse, with neither of them sure of what’s causing all this bloody build-up in my chest. The surgeon said he could open me up again and investigate to see if there are blood clots he needs to scrape out, but he wasn’t sure if that was it, since I’m bleeding on both sides. So maybe it’s a systemic problem. The chemo doctor thought it was a systemic problem but couldn’t figure out why I kept bleeding when my PT/PTT (blood clotting) test came out normal.

So when I went to see the surgeon, he said he could do another surgery. Then I went to see the chemo doc and she said surgery might be dangerous now because we don’t know if my platelet adhesion is okay (implying, I guess, that I could bleed to death on the operating table). So we were stuck. I went to find another surgeon for another opinion.

But I’d run out of doctors to go to -- I’ve already been to every oncologist and breast surgeon in Singapore. So I went back to the surgeon I’d seen back in December when I was first diagnosed (Surgeon #2, actually). #2 immediately knew what the problem was -- same as what my mastectomy surgeon had suggested: blood clots. But unlike my mastectomy surgeon, this doctor had seen this happen with several of his patients who had neo-adjuvant chemo after a mastectomy. So he was sure this was the problem. Finally, some certainty and a course of action. Going in for surgery in two days.

There’s nothing more worrisome than seeing your doctors confounded and unsure. If THEY don’t know what’s going on, who do you turn to? I’m now a firm believer in second opinions. My advice -- when it comes to something serious, never ever go with just one doctor’s opinion. Doctors are human. They can make mistakes and have only their training and experience to draw from. Anything outside of that and they’re just as lost as we are.

I’ve now been to sixteen doctors since my diagnosis -- 15 in Singapore and one in the U.S. One doctor told me I’m famous among oncologists in Singapore. He said I’m known as the patient who tape-records doctor meetings and does research and asks lots of questions. I think ALL patients should do this and all doctors should expect this.

Diet Causing Bleeding?

Asked surgeon if he could test the blood for cancer cells. Maybe continual bleeding is caused by presence of cancer cells not letting the mastectomy wound heal? He said it’s highly unlikely, since the bleeding is on both sides, and there was no cancer on the left side to start with. But to put my mind at ease, he’ll send it out to the lab for a cytology report.

He drained bloody fluid from my right side -- from the lantern drain, which was fresh blood. Looked like tube was blocked, so he flushed it out and drained more fluid -- this was dark black. Total 22 ml. drained. Skin pouches are forming again, so now I have blood in the drain AND blood in my chest. Yikes.

Hemoglobin level has started climbing back up -- 9.9. Hooray. No blood transfusion needed.

Chemo doc says my platelet adhesiveness (hence bleeding) might be affected by lack of protein in my diet. I should be getting 60-80 grams of protein per day. She said to go back to eating lean meat and eggs. Stay off dairy, though. There’s no hard evidence, but she personally believes the fat in dairy promotes cancer. She said radiation will have to be delayed until we can get the bleeding under control.

After the doctor visits, Tony and I had prime rib for lunch -- first meat since January. And for the first time, I finished my meal before he did! It was yummy. I had to play the cancer card when they wouldn’t accommodate me and replace the side dish with vegetables. The waitress called the manager over and he refused to change the side dish for me until I pointed to my bald head and said, “Look, I have cancer. I’m on a very strict diet.” He immediately agreed to let me have my veggies. So in this unbending, rule-following country, you’ve got to have cancer if you want to make any kind of request that’s off the menu. Big sigh.

10 p.m. Noticed purplish discoloration (bruising?) on skin near armpit and skin lesion, at top of mastectomy scar. No pain though. Worry? Too tired. Will worry tomorrow.

Supplements Causing Bleeding?

Result of PT/PTT (blood-clotting) test was normal.

Drain full again, so surgeon emptied it. Said fluid looks like fresh blood so there must be bleeding in the chest. Called chemo doc with this update and she said to go see her right away.

My hemoglobin level has dropped “significantly” from 10.5 yesterday to 9.1 today. If it goes to 8.5, I’ll need a blood transfusion. Chemo doc put me on an IV drip for Cyklokapron (blood clotting), Venefos (iron), Recomon.

Both surgeon and chemo doc say to stop taking all my supplements because some may have interactions that we’re not ware of that could be causing bleeding.

Chemo, Good. Bleeding, Bad.

Went for my routine Herceptin treatment. While there, I showed chemo doc my lumpy chest. She was alarmed and said I couldn’t start radiation on Thursday as scheduled. She told me to go to my surgeon to have a tube drain put in on the right side to drain out the blood. I could have the less accurate 2D radiation with a lumpy chest, but she said she’d prefer I got the best radiation treatment possible, i.e. 3D conformal, even if it meant putting in a drain and risking infection. She said she’d monitor me closely for infection and give me a prophylactic course of antibiotics. Said she’ll talk to my radiation oncologist and convince him to give me 3D with drains in place.

Off to the surgeon. He put in a small “lantern drain” on the right side under local anesthesia. Left side can stay lumpy since I’m not getting radiation on that side. Drained 60 ml. after putting in the drain. Drain filled up before I even left the office, so emptied another 15 ml.

Surgeon consulted with my radiation oncologist by phone. Radiotherapy will have to be delayed for two more weeks, until bleeding stops and skin sticks flat onto chest wall. Radiation oncologist said he’ll have to do the simulation again, since the draining of blood has changed the shape of the treatment field. Need to go back to him once the fluid is all gone and chest has completely flattened out.

Radiation Simulation # 2

Went for my second radiation simulation session, this time with radiation oncologist # 3. He said due to the fluid build-up in my chest, not a good idea to do 3D conformal radiation since the shape and size of the radiated field will change day to day. Better to do 2D, which will administer an even dose of radiation to the entire treatment field -- hence, variations in skin elevation won’t affect it. But it also means the dosage can’t be varied to make cancerous areas get higher dose and lungs and heart area get lower dose.

Not happy with this compromise and asked if I could have a drain put in to drain out the fluid and flatten out the radiated field. He said there’s too high a risk of infection with putting in a drain, so just settle for 2D. He got testy with me so I just let it go. Bad idea! But I’ve already seen all the other radiation oncologists in Singapore, so I’ve run out of options.

Simulation took only 15 minutes, compared to one hour for the previous one. And this room had arm rests and a different machine -- a CT scanner, I think. The markings were also MUCH smaller. I asked the radiation therapist to use tattoos instead of markers to ensure accuracy and consistency, so she used them for the main three marking points in the middle of the chest and on two side areas of my torso. They’re just tiny little dots the size of pin pricks. I’ve often thought about getting tattoos. This wasn’t quite what I had in mind though.

Ready for Radiation?

Surgeon looked at seroma (fluid build-up) in chest and skin lesion. Did not drain seroma -- said leave it for radiation oncologist to see. Said skin wound looks a little better. Hope it heals by Thursday for radiation. If not healed sufficiently, radiation will have to be delayed.

Why isn’t this skin lesion healing when the mastectomy scars, which are MUCH bigger, have healed just fine?

Reconstruction Surgeon # 4

Went to see my fourth reconstruction surgeon after seeing on his Web site that he’d spent a year at the MD Anderson Cancer Center in Texas. And unlike other plastic surgeons who only listed breast augmentation, liposuction, and the like, he actually listed breast reconstruction as one of the procedures he does.

I liked him a lot. His U.S. training definitely shows in his professionalism. More doctors in Singapore should go to the U.S. for training in doctor-patient communication skills. He was clear and methodical in his explanation of the reconstruction options I had; he listened very well to details of my case and my goals; and he was articulate, kind, and smart. I’ve decided that when it comes time for reconstruction, I’ll go with him.

Chest is already filling up with fluid, and again, it feels thick like gelatin, rather than liquid. The bulging on the right side is creeping up toward the collarbone, so that it’s overlapping with the skin lesion. Skin lesion still looks like a red, raw, gaping hole.

Began course of antibiotics.

Black Blood

Went to surgeon about pockets of fluid building up in my chest. He drained 80 ml. from the left side and 60 ml. from the right. Unlike previous drained fluid, which was watery with slightly red tinge, today’s was very dark red, almost black.

Doc said it might be a cut or popped blood vessel that’s filled the cavity with blood. Said stress on blood vessel may have caused rupture and bleeding. Need to refrain from too much strain on arms and chest. No more yoga.

The fluid build-up has worried me for a while. The bulging was bigger and more solid than before -- not like liquid, but a sack of gelatin. On the right side, it was like a crater where the scar is -- flat in the middle with a donut-shaped hard mass around it. Surgeon said it’s unusual to have fluid this long after surgery, but maybe because he did a skin-sparing mastectomy, there’s a lot of room in there for fluid to collect.

Doc also look at the skin lesion, which looked worse than before -- raw, red, open wound. He wasn’t sure why it was taking so long for the wound to heal. He prescribed a course of antibiotics to prevent infection. He said to avoid shellfish. There’s no scientific evidence, but he said the Chinese believe that shellfish impedes wound healing.

Since I’ve given up meat, I’ve been eating more shellfish than usual. I’ll stop now.

Pre-radiation Check

Surgeon said skin lesion still needs to heal some more before I can start radiation. He’ll talk to my new radiation oncologist about it.

He said fluid build-up isn’t excessive and it should reabsorb into the body on its own. I told him that the last reconstruction surgeon I went to see drained 15 ml. of fluid from each side and another reconstruction surgeon removed some sutures from the skin lesion -- both on April 24.

He said to go back to see him one more time before radiation starts on May 25.

Herceptin, Radiation Oncologist # 3

First dose of Herceptin (sans other chemo drugs) after surgery. Took just under two hours.

I asked chemo doc if it’s okay to delay radiation until I find a radiation team I’m comfortable with and she said no prob. Said no worry about cancer growing during delay because PET-CT scans before and after surgery showed no cancer. But I pointed out to her that tissue removed during surgery still had cancer in it, despite the pre-surgery scan showing negative. She said scans don’t pick up microscopic disease, but no need to worry because cancer can’t grow that fast. Hmmm... I recall that my cancer was the most aggressive grade of tumor and it DID spread to the skin and neck during the two weeks we were away at Christmas time. Worried. Showed chemo doc my radiation markings and she agreed they didn’t look great.

Went to a new radiation oncologist (# 3). Seemed nice enough. Took down my history, looked at my records. Said he would give me slighter higher dose of radiation than the first two radiation docs I’ve been to -- 5040 Gray in 28 sessions as opposed to 5000 Gray in 25 sessions. He’ll talk to my surgeon about radiating axilla near the neck lump. Will consider using 3D conformal radiation to ensure getting internal mammary chain without harming the heart. Will get a bit of the lung and liver, but liver is not a worry because liver cells regenerate themselves. Lung is unavoidable but will minimize risk. Said no worry about waiting until May 25 for radiation to start (he’s booked until then) because I’m on Herceptin so risk of cancer coming back is not a worry.