Friday, February 25, 2011

An Apology from Dr. #*@

Hmmm. Dr. #*@% sent me a letter of apology. It arrived sometime in the last week, maybe while we were in Portland, but I just opened it today. Things have just been too busy - I thought it might be a survey or just info about OHSU, so I didn't open it. I must admit to being surprised at getting the letter, but I'm glad that he wrote it.

In the end, there was some kind of miscommunication between him and me. I don't think I framed my questions in such a way that I could get the information I wanted from him and for his part, he didn't take the time to really listen to what it was I was asking. I also still think that he implied that I should give up on the idea of a new implant or getting rid of the "dog ears" because I had bigger things to worry about.

He did say, and rightly so, that he would fix the dog ears if I ever wanted to come in and schedule the procedure. I just haven't scheduled it because I was waiting for a time when I reached stable disease again. I didn't think I should go through such a procedure while on chemo, for example. It was two months after reconstruction when I found out that the cancer had metastasized to my lungs. While the lung tumors seem to be resolving, the one under my armpit hasn't, so the time for such a procedure has never presented itself.

He also said that he couldn't have prepared me for the removal of the implant. It wasn't so much preparation I needed so much as a simple, "I'm going to take out the implant right now" would've sufficed. When I showed up that morning with the implant showing through the wound, he said, "it has to come out" and I said, "Yes, I understand. But when will you do it?" and he never answered. He just proceeded to take it out.

I accept his apology because he seemed sincere and ended with this statement, "I went into our last meeting as a surgeon feeling inadequate that I had nothing to offer you. You remind me that as a person I could have done much better." I doubt, though, that I will go to him again. After seeing the surgeon and plastic surgeon in Portland, there was such a difference in empathy and spirit. I felt no arrogance or dismissiveness from either of them.

I really like the surgeon here in town - in fact, I saw him this evening when we went up to see my dad and he joked about whether or not I sent out any letters. I told him that I asked my dad's surgeon to not bark orders at my dad and to request things in a gentler bedside manner. He just chuckled and said something about how there were maybe 8 other surgeons like my dad's in town.

I think I need to process this a little bit more . . . but it was an interesting find this evening!

Thursday, February 24, 2011

Home from Vegas; Dad is doing better

I got home from Vegas last night - roads were okay since the weather system didn't hit until early morning today. I picked up Eddie - it was great to see him again!

This morning, we woke to a few inches of snow, but I still drove Eddie and me to our appointments. Then a friend of mine, R., kept me company to go to OHSU, just in case the roads were bad. But the roads were fine.

I met with both the surgeon and plastic surgeon - I really like both of them! They are going to try to schedule me for surgery ASAP, which may be the week of March 14. I will keep you posted once it's scheduled. It's going to be a long surgery - maybe 7 or so hours. But they feel they can take care of the area under the armpit and reconstruct the tissue there. They said that I have the distinction of being a "unique" (or "unusual"?) case. Dr. P (the surgeon) kept saying even though one or two options are closed because of prior treatments, there are other options. They will take the latissimus muscle on the left - probably the whole muscle - to reconstruct the armpit. They will take out the implant - so I will be flat for awhile. But a much more positive experience than with Dr. *##!

Dad is doing okay. She got up to walk around twice today. I saw him this morning and was able to tell one of the docs to "stop barking at her" and to "ask gently" to move. The nurse (N.) gave me a thumbs up and said I did the right thing!

I am about to go up and say hi. We had to wait for the nurse shift change to see her. I'll write a P.S. with news . . .  

P.S. Dad was okay. Drifting in and out of sleep. Chatted with the nurse about his recovery. Send healing energy her way somshe can get a good night's rest. Love to you all . . . Thank you for your good energy, thoughts, and prayers so far.

Tuesday, February 22, 2011

Dad is in ICU

Yesterday, dad's angiogram showed three blocked arteries and a leaky aortic valve. So, they decided to do open heart surgery ASAP. They wanted to do a triple bypass with aortic valve replacement. Then while they were there, they discovered a severely damaged mitral valve. They repaired that, too.

She's in the ICU (Liz, my dad is transgendered). Today, the EKG results were not "good" or as good as they wanted, so they planned to do an echogram. Still no word yet.

I ended up going to Vegas as planned - there are plenty of people around to help my mom and I needed a mental health break. Dad said it was okay for me to go.

Enjoyed Red Rock Canyon very much! We'll see Zumanity this evening.

I'll keep you all posted on my dad.

Sunday, February 20, 2011

Vegas from Mon to Wed, OHSU on Thurs, Cabin Fri to Sun

A few weeks ago, as I was chatting with my Hawaiian friend and colleague on the phone, I invited myself to visit with her and her family when they are in Vegas this coming week. I leave tomorrow afternoon and come back Wednesday evening. We plan to see Cirque Du Soleil Zumanity and also go to Red Rock Canyon. We need to tie up some loose ends from the Hawaiian workshop, too.

While I was in Portland, I got a call from the doc's office at OHSU - I will see him and the plastic surgeon (a female) on Thursday afternoon. I'm not sure how quickly they can work me in for surgery, but I'll know more next week.

Then on Friday evening, I head to a cabin in the woods with my coauthor - we are writing a paper called Seabirds of King Island. It'll be good to have that time to chat together.

And, I have two applications due March 1st and one on March 7th.

Dad had chest pains the whole time we were in Portland, so she went to the ER last night. They've run all kinds of tests, all came back negative (or normal) until the stress test today, which she couldn't finish. The doctor also listened to various arteries and heard abnormalities, so they suspect it's angina or clogged arteries in her heart. They will do an angiogram tomorrow to be sure and then they will decide to do.

It's gonna be an interesting week . . .

Friday, February 18, 2011


My son is having a great time here in Portland.

We are here for his school's annual academic tournament - they have multiple competitions in academic, music, and sports.

He participated in the Knowledge Bowl yesterday. Unfortunately, they lost their first two matches. He didn't seem too disappointed. He was anxious to get into our hotel's indoor swimming pool.

We're staying at the Embassy Inn and Suites - it has a wonderful inner courtyard, complete with a waterfall and koi ponds. They also have a nice continental breakfast plus a "manager's happy hour", with free drinks and also snacks.

Eddie didn't get much time with kids while in Hawaii. Here at the hotel, he's getting as much time as he can handle. He's having a great time playing in the pool, running with his pals through the hotel.

While he does that, I'm visiting with the other parents and the teachers.

I feel like I should be doing something . . . my folks came with us and I just want everyone to have a good time. So, I feel like a tour guide, but I'm trying to get everyone to voice their opinions about what they want to do. Hard work!

Eddie would love to just hang at the hotel. But I want to get out and look around Portland. So, this morning, after watching part of the Spelling Bee, we went to Ikea. Finally found a TV stand for the flat screen we bought before Thanksgiving. We also bought a few other little things.

Then we had lunch with a dear friend of mine.

Eddie was in the pool for an hour and a half, then we came back to the room to relax. Then I picked up dinner from Red Robin. Then it was visiting time for me - and pool time for Eddie. I stayed down in the courtyard/snack area and Eddie hung out with his friends. He ended up staying the night in a friend's room. It is like one big slumber party for him.

All in all, it was a good day. Ed seems to be having fun. I'm having fun chatting with the other parents. My folks seem happy, too.

We head home tomorrow, then Monday afternoon, I fly to Vegas and come back Wed evening. Then Thurs pm, I have an appointment with the OHSU docs.

Busy month. I'm just glad I had energy to do it all!

Wednesday, February 16, 2011

Need a Personal and a Professional Secretary! Holy Cow!

Yesterday, I had three appointments and then I tried to attend to some details at work. Took care of some details on Monday but didn't get to all of them. I felt unsettled all day. I couldn't remember what it was I needed to do at work - luckily, I printed out stuff I needed to respond to and finally got to that today.

Then, I had to sit and think about those things I needed to follow up on with regard to my medical stuff. I ended up spending 45 minutes on the phone this afternoon talking to the wound care supply company (yes, I need those dressings sooner than the 30-days that was authorized; the wound is draining more! It's 15cm x 11cm big! I go through 8 packages of drain sponges and it's still been leaking out onto my clothes! - I said that three times, I think) and also waiting on hold with the surgeon's office in Portland. That office was supposed to call me back yesterday. I also had to call my oncologist's office to see if they refilled my Flagyl prescription - I crush the pills and sprinkle the powder on my dressings to cut down on wound odor. They had forgotten to have my doc authorize the prescription on Monday and apologized for their error so they took care of it this afternoon - I can pick that up any time.

Luckily, the wound care nurse has supplies that I can use until I get the reordered supplies from the wound care supply company.

The doctors' office in Portland apologized because they realized they had forgotten to call me yesterday to tell me that they need to have the surgeon make the call about whether or not he can squeeze me into his schedule sooner rather than later. They will see him tomorrow and will call me back.

I need a personal secretary to help me keep track of these phone calls to doctors' office and wound care supply companies.

My mom just told me that she put the clothes that I washed into the dryer because I forgot about them.

I also need a Professional Secretary to remind me who I need to respond to on email. I got about 50 messages today, about 15-20 of which needed answering . . .

I needed to take care of these details because I will be spending the next few days with my son, who will be attending his first academic tournament with his school. He is on the Knowledge Bowl team, who compete tomorrow. We are staying in Portland for this and I expect to have fun. He'll be able to play in the pool at the hotel with his school buddies. We hope to go to Powells and maybe to Ikea and to visit with some of my friends there in Portland.

Then, Monday afternoon, I fly to Vegas for two nights. I will be hanging out with my friends from Hawaii and we plan to go to Red Rock Canyon and to see Cirque du Soleil Zumanity!

Life settles down a bit after that - oops, no wait, I will spend a weekend at a cabin in the woods cowriting an article with a colleague. Then life settles down a bit.

That is, of course, until I have surgery.

Then spring term classes start again.

Good thing I'm drinking a glass of red wine tonight! Ha!

Monday, February 14, 2011

Referral Tag - Why am I always "it"? LOL

While I was in Hawaii, both my (ahem) former plastic surgeon and my regular oncologist referred me to surgeons at OHSU in Portland. I figured I'd wait until today, after I got home, to call to make appointments. I was too busy to call.

I decided that I should call the regular surgeon (referred by my oncologist) first and get his referral for a plastic surgeon before I make any appointments.

So, I verified the OHSU surgeon's name with my doctor's office and called to make an appointment.

The scheduler said that she can't schedule an appointment until she receives my records from Dr. K.

I called Dr. K's office and told them that while Dr. K may have already discussed my case with the surgeon - and the surgeon has apparently already agreed to do the surgery - the surgeon's office still needs the records.

Dr. K's office said that they FAXed my records to the OHSU surgeon's office sometime last week. But just in case, they would FAX the records again for me.


I called the OHSU's surgeon's office and reported that Dr. K's office FAXed the records last week. The OHSU surgeon's scheduler said she hadn't received them. I informed her that Dr. K's office was sending them again.

So. I wait.

Somehow, I became the go-between "it" person in the tag game between these doctors.

The OHSU surgeon is apparently out of town until the first week of March, so now I have no idea for when my surgery might be scheduled.

I can't make plans - like colleagues taking over my classes - until I know more.

Ah, there's a lesson here. Live in the moment! LOL


Last week, I was the recipient of many gifts from my hosts in Hawai'i. I'm still mulling over the stories they gave me, which means that they are now part of me. I like that idea and I appreciate those gifts. Thank you Kekuhi and Tangaro!

Then, in the mail today, a dear friend sent me a check. I think it was in response to my worry over finances before the holidays. She said, "buy something for you or Eddie".

Okay, my dear friend. I will buy something fun for us. Eddie has already picked out a new wii game! : )

So, thank you, friend! It is much appreciated since the bills from the new year are starting to trickle in - I need to meet the $1,000 maximum out-of-pocket expense for 2011. That means nothing extra for awhile . . . but that's the way it goes.

I really am blessed by friends old and new. Thank you everyone!

Pele and Me

I will talk more about my trip to Oahu later. But for now, I'd like to talk about my experiences on Kilauea.

We went up near the top of the volcano last Monday afternoon. That evening, we had a welcoming ceremony to the place and then the next morning (Tuesday), a sunrise ceremony where we offer ava juice to the crater and other people (i.e., plants and rocks) that we found there. Before the ceremony itself, we went through steam from a steam vent (maybe as a way to purify ourselves).

The steam is considered to be a manifestation of the female energy of the place, so I imagined the steam replenishing my yin energy (according to Chinese medicine, yin is a female energy). I am such a Yang personality (very active, hates to sit still) that I have depleted my yin so many of my acupuncture treatments revolve around gaining my yin energy back. I mention this because I think this was the start of my connection to the volcano - and to the fire, Pele.

On Wednesday, I couldn't get warm all day (our meeting room was chilly) and since I only had one pair of pants and didn't want to wear them four days in a row, I wore capris and sandals. By the afternoon, I started to feel chills. After we ended our afternoon session, I went back to the cabin, put on several layers of clothes, and tried to get warm. Then we went to dinner, but I only stayed long enough to eat. I was too chilled.

I kept on all my layers and huddled under a blanket on the coach. We had the heat way up in the cabin. I sat there for two hours trying to get warm enough. My hands and feet took the longest to feel normal. IN the meantime, I felt feverish. My brother noticed my face was really red. This was after he came back inside the cabin where he also noted the "plume" or a bright red glow off in the direction of the crater. I decided I had a fever then.

I got ready for bed - changed my dressing and took my herbs and Ibuprofen. One herb is for colds and flu; I take the Ibuprofen for the inflammation and swelling in my armpit.

I slept fairly well, although I woke up in the middle of the night perspiring a little bit - my fever broke. The next morning, I found out that the plume had died down again. As I changed my dressing, I noted a rash on my chest, radiating out from the tumor on my breast bone.

That evening, after the hula performances, some of us went to the crater to see it one last time. It was dark out. When we got the crater, we turned off the flashlights and we really couldn't see much out there except for vog (volcano fog). Maybe a bit of a glow out in the crater. Then it began to grow - the plume appeared again. Each time it grew, one of my friends, would say, "wow, look at that!". As it grew, I felt warm again - and then it seemed as if heat was radiating from the rash on my chest.

So, I think I had a connection with Pele, with the fire of the volcano. I responded to her heat or she was responding to my heat. I find myself thinking of my local volcanoes. My niece had a henna party on Saturday and I decided to put a volcano henna design on my wrist and forearm.

I'm looking forward to going back.

Saturday, February 12, 2011

I'm back home!

I arrived home late last night - I will tell more about my trip in a longer post tomorrow. I just wanted you all to know that I didn't fall off the volcano; I was too busy and didn't have a great internet connection, so I didn't spend a lot of time on the internet. I had a great time and I didn't want to come home.

I'll be back tomorrow!

Friday, February 4, 2011

I forgot to tell you . . .

I forgot to tell you . . .

I sent the letter to Dr. plastic surgeon. I sent copies to my oncologist, the general surgeon, and to the plastic surgeon's immediate supervisor.

We took a scenic drive up Kamehameha Highway today, to Haleiwa. I wanted to try paddle boarding or kayaking, but we decided to go to Waimea Valley instead, and Waimea Falls. We saw maybe 1/3 of the birds in the valley, interesting plants, and Eddie swam in the pool at the base of the falls.

We had dinner in Haleiwa and walked around a bit. We were all bushed so we didn't do much walking by then. I have more blisters on my feet (thanks to Abraxane, I am prone to them) because I walked barefoot on the beach yesterday morning. Eddie said his hip hurts when he walks too long.

The scenery along this drive was beautiful. Thanks to Scotty for driving.

Eddie woke up early again today, so got up to see the sunrise. This time I walked north on Kailua Beach, all the way to the end. I saw several fishermen. I think I saw a turtle. It was sunny blue skies all around. Gorgeous.

Then, while Eddie played for about 45 min in the water, I read a book in a chair. He went back in after drying off some. I finished my book. So, I walked about an hour this morning. Read a book on the beach for an hour and a half. Then we drive an hour and a half to Waimea Valley, walked a mile and a half round trip to the Falls. And, then back home.

No wonder I'm tired. But it's a good tired. A tired from lots of physical activity and sun.

Tomorrow we're going to the Marketplace at Aloha Stadium, then maybe snorkeling at Hanauma Bay (well, the boys will snorkel), then to see the Halona blow hole. Then, more beach time. Relaxing.

It's a good thing.

Thursday, February 3, 2011

We're in Hawaii!

We made it safely to Honolulu yesterday and after finding the place and settling in, Eddie was in the water for at least an hour and a half. Then we relaxed through the evening.

Today, we woke up early, before dawn since our bodies are still on Oregon time. Then I walked down to the beach to watch the sunset - I was down there an hour and a half and enjoyed myself thoroughly! Took some great pics, which I will post someday.

Then, after lunch, we went to Sea Life Park - Eddie and I went last year - we watched the Dolphin Show and got wet. Then because I found a coupon and saved $35 and then found out that they discounted the Dolphin Encounter by $30, I decided to let Eddie get up close and personal with Maui, the Atlantic bottle nosed dolphin. He got to "dance" with him and then the dolphin kissed him and he kissed the dolphin. (He thought that was kinda weird, kissing a boy dolphin!)

Then, after resting a little bit, Eddie and I had dinner with a friend from high school, who now lives here in Honolulu. It was fun catching up.

But I am tired. My wound has been draining more, if that is possible. It regularly leaks out. Dang! Part of the reason is that there are so many lumps and bumps, it's hard to get a good seal with the plastic adhesive over it, so when I move, a little hole is created. Good thing our place here has a washer and dryer.

Did I mention that our little one-bedroom with kitchenette place (with a decent sized sitting room), is right on Kailua Beach? It's a nice comfortable place and the owner and his daughter are very nice people.

I could get used to this . . .

We've got two more days here. I think after another sunrise walk and playing in the water in the morning, we may go for a drive to the NOrth Shore. I'll let you know what we do on the flip side!