Saturday, June 28, 2008

Clean Margins

Surgical success! I heard from my surgeon, and the tissue removed in the 2nd surgery was negative for cancer, so we've achieved the clean margins we were looking for.

Next step, resume chemo, with a new drug mix: adriamycin and cytoxan (the standard breast cancer treatment) paired with Avastin (trial drug), starting July 16. The date was pushed out by 2 days because we couldn't start chemo until at least 3 weeks after surgery to allow for healing.

Tuesday, June 24, 2008

2nd Surgery

Second lumpectomy was completed today, and again we need to wait about a week to find out if we got clean margins this time. Keeping all my fingers and toes crossed! Using my port was once again a drama. I absolutely insisted that they use it, though the anesthesiologists suggested several times that it would be easier to just run a new IV in my arm. Yeah, for them, maybe. The nurse in the surgical unit who was supposedly experienced with ports tried to poke the needle into it about 4-5 times, but couldn't get it to work. This was with 1 other nurse and 4 anesthesiologists observing so they could learn how to do it. I don't mind the observers (all of whom had a good feel up of the port as well), because I know that's the only way they can learn, but I felt like a sideshow attraction. Eventually they called my regular nurse in the infusion unit (where I get my chemo), where they do these things all day long, and she agreed to send someone over to help. The audience reconvenend and she got the job done in one try with a lot less painful poking, to many oohs and aahs of appreciation. Hooray for oncology nurses! All my advocating for myself paid off, and hopefully for future port patients as well. The infusion nurse offered to give a port education talk at a future surgical nurses' meeting, and also said she could arrange for the surgical nurses who were interested to spend a day in infusion getting more port practice. I'm feeling good that I didn't back down and let them give me an IV this time.

Not much to report on the actual surgery as I was asleep. I assume something happened because I woke up bandaged and sore.

Assuming I get a good result from this surgery, we're now planning to resume chemo on July 14th. Any ideas for how to celebrate Bastille Day in the hospital?

Tuesday, June 17, 2008

Surgery: Somewhat Successful

Lumpectomy was performed June 11th by my surgical oncologist, Dr. Michelle Specht. Adding cruel insult to injury, Colin and I were required to check in at 6:00 a.m. for a 11:15 a.m. scheduled surgery. This followed a hot night in which we slept with the windows open for some breeze, and our stoopid neighbor decided to set off fireworks at 11:00 p.m. Naturally Sarah woke up and cried off and on for the next hour, requiring me to go into her room about 20 times. Plus I couldn’t eat or drink after midnight, so I arrived having a head start on being tired, hungry, and grumpy which would only worsen over the course of the morning.

The first event after check-in and changing into a hospital gown was a lengthy disagreement over whether they would use my port or place a new IV line. I insisted to the day surgery nurse that I wanted them to access my port and use that for any IVs. First she said that the anesthesiologist wouldn’t want to use the port (out of fear it would get ruined – huh?). Then after talking to a few people, she changed her story to say that since I needed to get a mammogram after having the line placed, the people in radiology told her we couldn’t use the port (which is on the upper right side chest) because it could get in the way of the machines. I gave in and let them put in an IV in my hand, but made it clear I was very unhappy about this. Since I was being a difficult patient, at least they called in an anesthesiologist to do it, and he did a beautiful job. As opposed to the other nurses who’ve tried IVs on me, he took 4 extra steps: first he warmed my had on a bag of heated saline solution, then he put the rubber tourniquet around my wrist instead of the usual arm location, he injected me with Lidocaine first (ow, but less so than otherwise), and finally choose a smaller than normal needle for the job. If they ever talk me out of my port again, I’m demanding this luxury treatment!

Next came the worst part of the day. I was sent via wheelchair (hospital rules) to radiology to have wires placed on either end of Chucky so the surgeon knows exactly where he begins and ends to aid in removing it entirely. On smaller tumors they may put one needle right in the middle of the cancer, but on my last MRI they had spotted some calcifications next to Chucky that “are probably nothing, but we’ll take them out too just to be sure.” Picture this: I am in the mammogram machine, undergoing “compression,” in other words with a squished flat left boob and no way to escape, and then they start poking more needles into me! The doc put in some Lidocaine, followed by a needle with a wire inside it. But the wire part hurt so much I began to cry so she gave me more Lidocaine. Now, why wouldn’t she just give me a crapload (this is a technical term meaning “lots”) of Lidocaine in the first place, just in case? So then I was miserable and scared and in pain, but wanted to get it all over with so we continued. She poked the two needles in – way way in – and then went and took a picture to see where they were inside my breast. Then she came back to me, jiggled the wires around a little bit, and took a picture again. Repeat about 6 times until she had them exactly where they were supposed to be. After about 20 minutes in the machine I was finally released. At the end of all this, I asked the nurse who was still in the room why my port couldn’t be used for my IV, since that part of my body was really not near the mammogram machine after all. She said, “oh, it would be fine to use your port, we have people come down here with them accessed all the time. Who told you it couldn’t be used?” This injustice set me off again so I was wheeled out to a waiting Colin all weepy and undoubtedly scared everyone in the waiting room.

Back upstairs to day surgery, where we had to let the wires sit for 2 hours before we could do the surgery, I’m not exactly sure why (maybe it’s like Jello). I read my Janet Evanovich novel which nicely fit the escapism bill. Dr. Specht came to talk to me about the surgery and warned me that there was about a 20% chance with this procedure that we wouldn’t achieve clean margins, which means that when the tissue is looked at under the microscope afterwards, they find that the tumor reaches the edge of the tissue, which means some of it could still be left in the body and they have to try again. Finally another anesthesiologist arrived to ask me what kind of sedation I wanted for the surgery – something that would let me be awake and talking while it was going on, or something that would knock me out entirely. He didn’t even get the question out of his mouth before I said “I don’t want to know or feel a thing!” Really, who would? Especially after the horrors with the wires. I was wheeled into the OR, given a mask, and woke up about 2 hours later, groggy with a chunk of missing breast.

Colin took me home and I napped the rest of the afternoon. He stayed home with me for 2 more days, and though I was sore, I wore a sports bra 24-7 and took lots of painkillers so I was capable of getting around and we even went to movies during the day, a rare treat (“Zohan” – good, “The Happening” – didn’t). When the weekend rolled around each kid managed to bump me on the surgery breast at least once, which was mighty painful.

Now, just as I’ve been on the mend, Dr. Specht called this evening. The pathology results are back on the tissue they removed from my body. The good news – there was dead cancer in there, showing that the chemo was working. The less good news – there were also live cancer cells, which we’d prefer not to see. Also the tumor was 4 cm across, larger than the 2.5 cm we thought it had shrunk to. The rotten news – while there were clean margins on almost the whole thing, there was one little spot of dirty margin. Therefore I am going back to the hospital next Tuesday to do this all over again. At least we get to skip the wire thing next time.

Friday, June 6, 2008

Prepping for Surgery

My surgery date is fast approaching - I report for duty at 6 a.m. on Wednesday, June 11th. Colin is taking 3 days off work to be there for the surgery and recovery time. I'll only be under the knife for about 45 minutes, but I'll be at the hospital for 6-8 hours. I don't know what I'll be doing for all that time, but will let you know afterwards! A few days ago I met with Dr. Ryan, my oncologist, for a final exam to give me the green light for surgery. She reviewed the results of a bunch of recent tests (MRI, EKG, mammogram, blood work, radioactive heart scan - alas no superhero powers arose) and said they all looked fine, no problems. Good to know my heart at least is working right! She also warned me that the surgery to remove the lump can be tricky because the tumor is not a solid ball, but kind of a blobby shape. She said there's maybe a 50-50 chance that the first surgery might not remove the whole thing. The way they know if we got it all is that after the surgery, the tissue is sent to pathology, and they check if it has "clean margins." Think of an egg - the tumor is the yolk, and the white is the margin of healthy tissue. They want a 2 mm margin of healthy tissue all around the tumor. So they have to test all the edges as much as they can by taking slices and looking at them under the microscope. If there is any area where the tumor touches the edge of what was removed, this means that there could still be some cancerous cells left inside me, which is bad. So that would require a 2nd lumpectomy. And if they still don't get it all by then, it may still warrant a mastectomy. It will take 7-10 days to get the pathology results after the surgery before we know if we have the clean margins we need. Oh, and we can't start scheduling any of the next rounds of chemo until we have the pathology results to know if the surgery was successful.

Dr. Ryan also reiterated that they'll need to take more tissue than I might expect, and I should expect to be permanently lopsided once everything heals. Cheerful lady! But I understand she wants to give me all the worst case scenario stuff up front so I'm not disappointed. I'm actually happy to be at the surgery phase of my treatment because it seems like a little vacation from chemo. Sure, I'll be in pain for a while, but at least I'll be kind of a normal person for a few weeks. And I should be feeling better just as Ethan finishes kindergarten and has a week of no school before day camp starts. Together with Rachel, our babysitter, I'm planning some fun outings with him.

Speaking of camp, I'm gearing up to go myself this weekend. Officially the program is called "Knowledge Strength & Grace: Living Through Breast Cancer 2008 retreat" but I just call it Cancer Camp. I'll spend 2 nights at a YMCA camp in New Hampshire doing traditional camp stuff (beach, canoeing, sleeping in cabins) plus they have lectures on cancer topics, yoga, nutrition workshops, breakout group discussions, etc. And it's all completely free as they have a bunch of sponsors - well, the price is having a life-threatening illness, I guess. I'm very excited! I get back the day before the surgery, so the timing is absolutely perfect as I should be feeling fine while I'm there. Tonight Colin and I are going to a Red Sox game, and my college friend Kathleen is visiting this weekend, and I'm still not bald, so all in all things are great just now. Ciao!