November 30, 2005

Saw my primary care physician today, Dr. Cortez. Unfortunately, none of my test results had been sent to him so we mostly just talked. We called and left a message at the oncologist's office to ask for copies of everything. BP was 124/84 which is a little high for me, but I think I'm under little stress. Weight up 1.5 pounds. Dr. Cortez called them Turkey Day pounds. I think they are more likely stress-induced-comfort-food pounds.

We talked about my upcoming chemo and the heart issues. He listened pretty thoroughly to my chest. He wants to keep close tabs on my heart and wants to see me about once a month for a while. We talked about exercise and I told him about walking up the hill (which is 6/10 of a mile straight up) and he feels that is not the right thing for me. Too hard on the knees and gets the heart rate up too high. We decided I should walk the perimeter of the farm (slightly hilly, but lots more level) and keep going around so the heart rate goes up moderately and stays that way for at least 30 minutes per day. I will supplement that with some water exercise as well. Next appointment with him is December 29.

November 29, 2005

I went to a meeting of the breast cancer support group on Tuesday evening. It was held at Teshima's restaurant upstairs in their banquet room. I was greeted at the door by some very friendly survivors, given a name tag and a little pink ribbon pin. There were about 35 people there - mostly women, but a few male spouses/partners. There was a benediction, and then food. One of the Kona Hospital nurses who is a survivor herself had talked Dr. Kashef (the new/only oncologist) into coming which was very nice. Once we all ate and talked a bit, those of us who were new introduced ourselves, then a few others also spoke to give updates on their treatment, their lives, whatever they wanted to talk about. I met another patient of Dr. Park and it turns out we will both be seeing him on Friday. Another woman is getting her first herceptin treatment on Monday. She has had a months long battle to get the insurance to cover it and won. So I'll probably be seeing her at the infusion center on Monday. I received several offers to call if I want tips on handling chemo side effects. All the folks there were very nice and welcoming and full of lots of information. They hold these meetings the last Tuesday every month except December.

November 16, 2005

More good news today. I saw the surgeon, Dr. Park, and the pathology report is as we hoped - the margins are now clear. Yay! I am healing well and had the major bandages removed. He told me they used so much betadine as an extra precaution against infection. That's also what has made my skin itch since it is very drying. He wants to see me again before we start chemo just to be sure it is healed well. So I have an appointment with Dr. Park on Friday, December 2 at 10:30 am. I will go get my labs drawn when we get back from seeing him in Waimea. He also said I could get in the pool in about a week as long as I just float around and am careful to pat the incision areas dry afterward. Still no lifting or heavy duty work with my right arm for a while.

One note he said to keep in mind for the future if I ever have surgery again (hope not). He said to be sure to inform the surgical team that I did much better with nausea after anesthesia when I did not have any muscle relaxants. That's the major thing they did differently on my second surgery and I was able to go home in a couple hours instead of having to stay over night with nausea and light headedness.

November 14, 2005

Hallelujah! Just heard from the oncologist this afternoon. My scans were negative! He said the echocardiogram was a little lower than he'd like it but that he doesn't foresee a problem. I am now scheduled to start chemo on December 5, which is a Monday. I go the Friday before to get labs drawn. Monday I will meet with the doctor at 9:00 am and then have my first infusion that day. My attitude is the sooner the better, let's get on with it.

November 10, 2005

Surgery day. We saw Dr. Park in the hallway while we were waiting our turn for the registration people. We explained the decision not to have the axillary node dissection. He said he thought it was a good decision. He also told us that they were waiting for the pathologist to arrive from Kona so the surgery wouldn't start at 10:00 but more like 10:30. This time we were going to have the pathologist look at the margins before they close me up so we can be more confident that we got it all.

As usual, they had a lot of trouble getting my IV started. We can only use my left arm since I've had lymph nodes removed on the right plus that's where the surgery would be. Took 3 tries and the anesthesiologist to get it placed. We (Jo, Jonathan & I) were good about telling them what trouble I had with nausea three weeks ago. So this doctor was very conscious of what she gave me and didn't. They put on a scopolamine patch as well as had me drink some vile thing that would help settle my stomach.

They gave me fluids and antibiotics and even some "happy juice" right as I was wheeled in. I vaguely remember moving to the table from the gurney and that's it. When I woke up I was very groggy but not too sick. That was about 12:20.

They decided that without the additional lymph nodes removed (hence no drains) that if I felt okay in a couple hours I could go home. So Jo, Jonathan & I just hung out. They gave me some coke and a couple animal crackers. My blood pressure was staying up where it was supposed to be. By around 2:30 I was dressed and ready to go home.

I now have a port-a-cath on my left side just below the clavicle and to the right of my bra strap. So no more zillion pokes to start an IV.

My left side (where the port-a-cath is) is more sore than the lumpectomy sight on the right. I don't look very lopsided (I think), but it does "feel lighter". May be I should have asked for a reduction on the other side and tummy tuck to go with it.

I hope this entry makes sense because I'm a little loopy from percoset.

November 8, 2005

One of the most important things to happen today was that Dr. Robinson called. He told Jo that they discussed me at Tumor Board today. This was a regular meeting of the breast cancer oncologists, surgeons, oncology radiologists, PAs, etc. They all agreed that they would not recommend having more lymph nodes removed. He said that was especially true with the surgeons. The prognosis doesn't change, would not change the recommended treatment and we have to radiate the underarm anyway. He also said that Dr. Park's estimate of a < 1% chance of lymphedema was really higher than that and not worth the risk.

So I have decided to refuse the lymph node dissection on Thursday.

Jo drove me to Waimea for the CT scan. Last night I had to drink a barium sulfate suspension they try to pass off as a banana smoothie. No food or water after midnight. Oh joy. The barium sulfate causes diarrhea. More barium sulfate in the morning on the way there (it's about an hour and a half drive from Captain Cook).

I checked in and within a few minutes I was taken in the back for a chest x-ray. Dr. Kashef had ordered that too since I'd never had one. The CT scanner was busy with an emergency so we did the chest x-ray first. Then went to the CT room. It had been too long at that point since the last of the barium sulfate so I had to drink some more.

The big deal was that they needed to place an IV (oh goodie) for the iodine tracer used for the scan. They explained that the barium "lights up" the digestive tract (esophagus, stomach, intestines) and then the iodine will light up the blood vessels and other organs like the liver and kidneys.

Sure enough, they try digging into my left elbow - ow! She got it in but it wouldn't let the catheter slide in so had to try again. Everybody slapping my arms and hand etc. They called in an ER nurse to get a better expert. She tried my hand, got it, but it blew immediately. So finally she got it in my left forearm.

The scan itself is not too bad. It's like a big ring with a table that slides back and forth within it. The ring is only about 16-18 inches thick and the opening is pretty wide so it is not that close to you. So it's not like an MRI tube at all. I was a bit worried that I should have requested a sedative but it didn't trigger any claustrophobia at all.

They did one scan first - take a breath, let it out, take a breath and hold it. They did that twice. Then they started the iodine tracer which makes you feel all warm and weird. I'd had to sign a release beforehand that explained the side effects, but the technician also explained further and that was a good thing. The flushing warmth extends to the groin and makes you fell like you have to pee. Glad she warned me about that or that would have been pretty freaky.

With the tracer two passes again. She came back in and disconnected the IV, but didn't pull it yet just in case (I think they wanted to make sure I didn't have an allergic reaction or something and need the IV). Then we had to wait five minutes and do another scan of the bladder and kidneys. I was all done and told to drink a lot of water to help flush out the chemicals.

I've been having more GI trouble with the barium all afternoon and evening. I guess with diarrhea it will all get out of my system quickly.

November 7, 2005

Dr. Park called on the phone and we discussed the surgery slated for Thursday. He told me he thinks he can get the clear margins without a full mastectomy. He wanted me to be aware that if the margins are not clear this time, I should consider a mastectomy if more surgery is warranted. He advised me that I should have 10-15 more nodes removed. He termed it as additional "staging". I guess he means to find out if more of them are positive. This isn't quite the attitude he had at the last appointment since back then he wasn't advocating more surgery. But Dr. Kashef was positive that this should be done.

Jo called Dr. Bill Robinson at The University of Colorado Hospital in Denver (breast cancer oncologist) and asked him his opinion about removing more nodes. He said he saw no value in it and it does have risks. But he wanted to ask the surgeon he works with for her opinion. Jo had already faxed the two breast cancer specialists my pathology report as soon as we got it. Both had already recommended going after clear margins but neither mentioned more node removal.

I told Dr. Park that I was waiting on a second opinion from Colorado about the nodes and he suggested we schedule the OR for Thursday for doing everything (wider excision of the margins, placement of the port-a-cath and removal of the lymph nodes). Then I can delay the decision about removing the lymph nodes until we get more information without messing up the OR scheduling.

I wanted to see what the cancer professionals in Colorado had to say and also maybe find out something more from the CT scan the next day.

This means that chemo will start on or about December 8.

November 4, 2005

Bone scan today. I went to Kona Community Hospital (KCH) at 10 am to have an injection of a tracer or radioactive "dye". Again the technician tried to start the IV in my left elbow and failed. The other technician came over to help and they found a good vein in my left hand. She injected the tracer over a couple minutes and sent me on my way.

I returned at 1:00 for the scan. I remained dressed in my own clothes since I had been advised to wear something without metal. They wrapped me up in a blanket like a burrito on a table so you can relax but not move. The scans last only a few minutes each. I wasn't too thrilled with the one over my head since this big plate is very close to my face and I'm a little claustrophobic. I just closed my eyes and tried to breathe and remain still.

Dr. Park was in surgery all day so I wasn't able to talk to him yet. Ahulani told me she'd get back to me on Monday with a surgery date.

November 3, 2005

Met with the oncologist (there is only one in West Hawaii). His name is Dr. Kashef. He seems to really know his stuff. He told us that we need to go back in and try to get clear margins. I was expecting this since Jo had consulted with the breast cancer doctors back in Colorado and they immediately said that they would do that. What I wasn't expecting is that he'd want to go remove the rest of the lymph nodes under my arm. What we learned was that since Dr. Park had not done a sentinal node biopsy (which uses dye to find out which node is the first in line from the tumor), we are unsure which lymph nodes had cancer and which didn't, if they were in a line and if the positive ones were at the sentinal node and the next one positive, then the others clear, or what.

His recommendations for chemo are pretty much what Jo had expected except he wants to do the AC as "dose dense". That means we'd do them every 2 weeks instead of every 3 weeks. And add neulasta to try to keep my counts up. This is a tough regimen but if I can tolerate it that means I'm done with that part in 8 weeks instead of 12.

Next would come taxol once a week for 12 weeks and herceptin since I'm HER2 positive. Jo's docs would have done radiation at this point, and then started taxol. Dr. Kashef wants to do the radiation at the end. Prognosis is the same either way, if I understand correctly, but that way I'd get the nasty chemo parts over with sooner. A few more weeks to recover from from the taxol and the radiation for 6 weeks, 5 days per week.

Dr. Kashef's staff was able to get me a CT appointment for November 8 in Waimea so I canceled the one at Kona Community Hospital fro the 14th.

We went over to the infusion center after my appointment to meet the nurses and see the "demo". Mr. Johnson has a port-a-cath that he doesn't mind showing or talking about. He is a very nice man. I will also get a port-a-cath installed to help with the chemo. I have awful veins and starting an IV is tough with me. This was proven when they said I could have the blood drawn for the labs right there at the infusion center. The nurse who tried to draw blood dug into my left elbow and it just wouldn't bleed well. They do have an IV nurse named Patty who got it from another vein in my forearm. She was much gentler.

Dr. Kashef sent me home with lots of chemo drug information and promised to call Dr. Park to discuss and schedule the additional surgery. He also sent me to Dr. Satta in Honalo at 2:45 that afternoon for a echocardiogram. Several of the chemo drugs he will use for me have potential effects on the heart so we want to make sure it's in good shape to begin with.

Chemo will start 4 weeks after surgery to allow time to heal.

November 2, 2005

I finally got a call about the bone scan and CT. Bone scan could be done Friday but CT was backed up until November 14. I took both appointments and planned to push the oncologist into pulling whatever strings he has to get them done sooner.

November 1, 2005

I called to see when the scans would be done and the woman in the office had not yet even called them in yet!

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