I saw the surgeon yesterday and there wasn't a lot of necrotic tissue that he could clean out. He and his nurse were also quite impressed to see how much the area had changed in just one week. No more raised mound, no more Mount Herminator. The area now looks more or less like the right side. Except of course, it has a deep wound that goes down to the chest wall - about 4 cm.
It isn't draining as much. If the plastic surgeon is available, it looks like I may have the surgery in December, after the next round of Abraxane.
Also, more of the satellite tumors seem to be shrinking and disappearing as is the swollen lymph nodes elsewhere in my body.
Had lunch yesterday at Pastini's with the other models from Puttin' on the Pink (now, POP for short). I thought there was only four of us, but it ended up being about 11! It was fun! Randy Millstein, our photographer, was also there and he distributed CD's of photos of the night, including me doing the shimmy-like surf move! AS soon as I can download the photos, I will post them.
Another of the models, M, knit a pink winter hat for me. And, my colleague N gave me a new scarf and earrings plus she gave me four more beautiful scarves on long-term loan.
Eddie and I are heading to Bend today, for the night. We'll see a friend and colleague there - she has a new baby girl. I think we'll also talk about work some. And, I'll take Eddie to Sun Mountain Fun Center to play at the Arcade. We may even play in the snow. Another friend, B., who went to the coast with me last month, will join us for the trip.
All in all, life continues to be good. Good news on the cancer front; friends are giving me gifts again; I get to celebrate life this week-end. I love holidays!
A big thank you to M and N for the gifts! As I've said before and I'm sure I've said again, I have great friends!
Saturday, October 30, 2010
I saw the surgeon yesterday and there wasn't a lot of necrotic tissue that he could clean out. He and his nurse were also quite impressed to see how much the area had changed in just one week. No more raised mound, no more Mount Herminator. The area now looks more or less like the right side. Except of course, it has a deep wound that goes down to the chest wall - about 4 cm.
Thursday, October 28, 2010
Today, I didn't have a lot of time between acupuncture and a meeting on campus, so I went to Famous Footeear to look for socks, to see if they had hats or scarves. My brother, Kevin, had given me a gift certificate for my birthday. I have tried to use it a couple of times, but never found anything, so I thought I would look around.
Today, the store had a sale on boots, and in the end, I found a comfy dark brown pair that come to mid-calf. So, I finLky found myself my brother's birthday gift!
Then, some old friends of mine called to invite me to dinner . . . They missed my little birthday celebration in July and now theyndecided to buy me dinner. So, of course I was free! I had a mozzarella, tomato, and basil salad! Yum!
So, thank you, Kevin, and thank you, R and T! I had a great birthday, three months after the fact!
Wednesday, October 27, 2010
Today was a day when I didn't have any medical appointments! I also feel fairly normal and not tired. That is due, of course, to my blood transfusion yesterday. I thought that I might feel this burst of energy, but instead, it's more like my normal self. I like that.
I saw the wound care nurse, first, yesterday. She said when she saw how much the wound had changed in one week that it was "exciting". She said the same thing last week, too. So, I asked her why she was so excited at the changes in my wound and she replied that usually, when she and others see a cancerous wound/tumor as large as mine was, it usually keeps growing and eventually the patient goes home to die.
Whoa. I didn't realize it was as bad as that. Good thing, too! Anyway, she said that the whole area seems to be responding very well to the Abraxane treatment (which I believe is working in conjunction with the immunotherapy I had through UW). The wound/necrotic tissue has gotten smaller, from a high of 12x15 cm to what is now a 9x7 cm area. In only a few weeks, too. So, yes, I guess that it quite amazing!
I had the blood transfusion yesterday and it took about 5 hours from beginning to end. It went off without a hitch, as far as I can tell. I worked some, I called and made/rescheduled appointments, I played on facebook, I answered work emails, etc. I love all those nurses up there. They are very nice and sweet.
So, today was a good day. I met with my grad student; she now has a plan of action for the next few months. I taught my class. I have so much material I want to share with them and I always run out of time. But I guess over prepping is better than under prepping. It's a good class.
Then, I received an email about a co-authored journal article submission after I returned to my office and it got me all riled up. I won't go into details, but it seems that personal politics played a role rather than an objective reading of the article. I wrote a draft response - sent to a friend - so I can get it all out of my system. Otherwise, I might sit and fume about it.
Then again, maybe not. I think I'm changing inside and am learning to let go of stuff easier. Plus, I'm dwelling instead on the good news that after only three Abraxane treatments, I seem to be having an excellent response. Oh, and I got two cute crocheted hats in the mail today from a friend from high school. Thank you, C! Reason to celebrate! (I've said that before, huh?)
Ah, so no complaints. Life is good.
Monday, October 25, 2010
How am I feeling these days? In a word - happy. In love with life!
When I look back at the last few months, I see just how much my physical symptoms and side effects impacted my sense of well-being.
First, beginning around my birthday in July, I had an "inflammatory flare" in my left armpit due to the t-cell infusions and Herceptin. This inflammation caused a lot of pain and I ended up on pain pills for several weeks. So, I either felt pain, or some slight nausea and dizziness and fatigue from the pain meds.
Then, I had withdrawal symptoms from the pain meds - about late August.
Then, I ended up with an open skin wound. Got the news of disease progression and discussions with doctors about next steps. The whole area is still swollen and somewhat painful, not as bad as in July/August.
Then, I ended up with an infection in the wound and it started to grow. Fever, chills, and/or nausea/fatigue from the antibiotics. That was late September into early October. More discussions about what was going on - worry that I'd be hospitalized, worried if I should start treatment while still fighting an infection, placement of the P.A.S. port, starting a new treatment, learning about side effects.
Whew. A LOT was going on. In one sense, it was like I was a ball in a pinball machine, bouncing from one symptom and side effect to the next.
But now? Now, I am settling into a kind of routine again. Side effects are predictable. Side effects are doable - just fatigue and hair loss. My work is going well - when I'm there. I have a plan of sorts. I know what will happen in the next few months. There's evidence that the treatment is working. Mount Herminator is now a witch's cauldron. I don't have to lift my arm up constantly anymore. I can sleep on my left side again.
My heart, my soul, my mind - all feel lighter; I feel happier. A big weight has lifted. I guess because for the first time since I found out that the cancer had gone into my left lung 18 months ago, I am finally responding to treatment (t-cell therapy combined with Abraxane).
I wish to give a huge thank you to everyone who has helped me over the past six or so months. From my family who takes care of me daily, to my chauffeurs to Seattle and in Seattle, to the people who donated funds so I can make the trips, to my medical team who takes care of me, to my friends who keep me amused and entertained, to all the many people who keep me in their thoughts, prayers, who send me blessings and positive energy and little gifts. Thank you all! I have a huge wonderful support system and I can't thank you enough. Because, you see, you help me. I am doing so well because of you.
Cancer's on the run, baby. Time to celebrate!
I had coffee with Cat and Robin and Robin's family on Saturday morning. As Cat and I walked back to her house, she observed that I am definitely in the Halloween holiday spirit!
First, I'm bald. Hair was falling out as we walked that morning.
Second, I told her that I was likely to get a blood transfusion this week (think, vampire).
Third, I told her that some of the dead tissue from the wound fell out while I was taking a shower. It's this tissue they call "slough", which is this creamy almost cheesy consistency stuff. It even sometimes acts like melted cheese, like on pizza, that has that strand of cheese that elongates . . . okay, I think you get the picture. The idea is, though, that I am like a mummy shedding flesh . . .
Now, this morning, I decided that Mount Herminator is no longer a mountain. As I mentioned, it had turned into an eagle's beak, then a floppy flapinator. Now, however, the cheesy creamy slough is located within a somewhat circular depression in my armpit - no more flap of skin over the area.
I decided it's a witch's cauldron, complete with some strange potion of dead cancerous flesh, Herminator-2 cells, and fluids. This particular potion leads to . . . no more cancer!!
Happy Halloween everyone!
I saw Dr. K today . . . it was great to confirm with him that the whole area with the wound has changed - in particular, the satellite lesions are smaller and a couple of the lymph nodes are smaller. So, I am responding to the Abraxane treatment. He asked how the treatment is going in terms of side effects, and other than fatigue and hair loss, it's doable.
He also took a look at the wound - morbid curiosity he said - and I'm glad he did so that he knew better what the surgeons and the wound care nurse are seeing, And, he's willing to let the surgeons decide if and when we do surgery to remove the rest of the diseased and dead tissue and to use plastic surgery to rebuild it.
Which means that I do the next round of Abraxane treatments, through November, and if the surgeons decide to go forward with surgery, then I'd go ahead with it in mid-December. However, if the plastic surgeon is away and I end up waiting until January, I will get the third round of Abraxane treatments in December, then take a break and do surgery.
After I recover from surgery, then I would do another few months of Abraxane. AS long as I keep responding, then Dr. K would keep me on it for six months total (with a break for surgery, if that is what we decided to do).
Fine with me. So, I've got several months more of being bald. I will definitely get a Henna tattoo at some point! : )
Sunday, October 24, 2010
Here are some pics from last week, when we went to Bauman Farms in Gervais, for some fall fun!
Eddie on some of the attractions for kids:
This past week, my hair started falling out. The nurses said that some people only get thinning hair with treatment, so initially, when I started seeing a few strands on the pillow on Tuesday, I just had it cut short and spiky on Wednesday in case I kept some of the hair.
Friday, October 22, 2010
I will write captions later, but for now, here's the pics!
Thursday, October 21, 2010
In honor of our upcoming holiday, I want blood.
Why oh why, might you ask? Have I become a vampire?
Well, it would certainly be more exotic to be a vampire, but sadly, no. I am anemic.
My hemoglobin went down to 8.0, only down 0.3 in a week, but since the Abraxane will likely put me below 8, they want me to get a blood transfusion. I guess if you are in the 7.0-7.9 range, your heart really has to work that much harder to deliver oxygen to your body. So as not to tax my heart, I will get a transfusion.
But a transfusion will likely take 4.5 to 5.0 hours. I am having lunch with a colleague tomorrow and I teach at noon on Monday. So no big 5-hour blocks of time when I can be tethered to my IV pole. (Hmm, I have seen YouTube videos of people dancing with their IV poles. Maybe I should bring stuff to decorate my pole somewhat it can resemble a human dance partner? Hmm, what do you think? I can bring my iPad with my music and dance down the hall or something!!)
So, I will have a blood draw on Monday morning, to check my hemoglobin level and the blood typing, and will get the transfusion after I see the wound care nurse on Tuesday morning.
Some of you may be wondering what is going on with the wound. Some of you may think, "no, that's too much information!" if you are in the latter category, go to the post above this one, where I talk about my anemia.
As you might remember, the tumor in my armpit became Mount Herminator. Then, the surgeon lanced the wound and over the last couple of weeks, The wound has been debrided of dead tissue. Last week, when it was debrided, it looked like a cave with an overhang of tissuenthat I likened to an eagle's beak which kinda covered the cave opening. It had a crook in the beak and everything.
Now, over the last couple of days, I can see the cave and the eagle's beak is becoming a floppy flapinator (I am rhyming with Herminator).
So, yes, between Abraxane and debridement, I have gone from Herminator to flapinator in just three weeks!
Now, who else might be able to say that? Not very many people, I would wager!
Tuesday, October 19, 2010
Over the past few days, I noticed a few (3 or 4) hairs on my pillow, so I wondered if I had started the "hair thinning" process.
When I got up this morning, I saw about 10 or so on my pillow.
Then, when I took a shower, every time I put my fingers through my hair to wash it, a couple of strands would come out.
So, the hair thinning has started! I see my stylist tomorrow and I think we're going short and spiky! I don't know yet if I will lost all my hair or just some of it. We will see. But I don't mind. Time to break out the hats!
Once I get to another computer, I will post pics!
More energy today. Which is a good thing. : )
Monday, October 18, 2010
I've had two Abraxane treatments so far. In terms of stomach/nausea/digestive problems, I seem to only get a gurfly stomach that night. Also, the anti-nausea meds cause some constipation, but that goes away after a day or two.
The biggest side effect is fatigue. This is explained by the fact that Abraxane affects your blood counts; when they tested me last week, I was anemic. My red blood cell counts (total red blocd cell, hematocrit, hemoglobin) were low, especiallyt he hemoglobin at 8.3. They were potentially thinking about giving me a blood transfusion, but my doctor thought I was still okay.
But I have certainly been fatigued. I exacerbated my fatigue with staying up too late on Friday and Saturday nights. Friday, I went to a grad student's house for dinner, but they didn't eat until 9pm, so we didn't leave until 10pm. And, Saturday, I was at Puttin' on the Pink all day. Sunday, we spent five hours at Bauman Farms in Gervais. I spent the last hour or so in the food tent while Eddie hung out with his cousins in the Dark Maze and then the Obstacle Course and the inflatables, which were all close to the tent. It was at the end of the day, so there weren't as many people. I got to rest and Eddie got to play. Also, dad drove up and back - a huge thanks for that! Thanks, dad!
I got to bed early enough last night, but I'm still fatigued. I got through class, but partly because I could lay down on the couch in my office and read and prepare for class.
I also feel that at least one or two of the lymph nodes and maybe some of the satellite lesions are smaller (lymph nodes) or softer (satellite lesions), which I think indicates that Abraxane might be working.
That's a good thing.
Sunday, October 17, 2010
I forgot to mention that I had my hair stylist fix my hair prior to the event. She ended up trimming the hair a little and then used a lot of product to kind of spike it up and out. I really liked it. It was fun!
But the best thing about it was that she would not accept any money from me!! She donated services for my big night!
Her name is Michelle Beaubien and she just opened her own salon, called "A Wild Hair Salon". It's in downtown Corvallis, near Starbucks and Noah's Bagels.
Please stop by and say hi. And, tell her that I sent you! And, that I say, Thanks!
Even if I say so myself, I think this event was a success. There was a lot of sitting around and waiting, but fortunately, all I needed to do was mingle, then dress, then walk down the runway. I got touch-ups on my hair and make-up when I got there - my hair was really fluffed out and I hope to post pictures at some point. My cocktail outfit was a pretty black dress with heeled sandals and a black sweater over it.
Then, about 8, we changed into our model outfits. I had these comfy khaki slacks from Ex-Oficio and a plaid shirt, with a pretty North Face vest (which got HOT under the lights), and matching Keens. I am definitely buying the Keens - they have a strap and are a pretty violet red. I think I may have had red shoes only once before in my life . . .
When we showed up in the afternoon, we practiced walking down the runway. I had forgotten that they wanted us to do a flourish as we paused, like wave or dance or whatever. So, on the way to get my hair done, I told my sister I should do that '60s/'70s move, where the girls (I'm reminded of surfer girls) hold on to their nose, raise their other arm and shimmy down. Rena said I should definitely do that.
I wasn't sure if I would or not, but during the cocktail hour, I drank two glasses of red wine. Also, when we greeted the model coming back up the runway, we were to do some kind of fun interaction. There was a male cancer survivor in front of me, who was fun and a complete ham, and he thought that we would do a "high 10", then turn sideways to each other, lick our fingers, and point at each other's rear ends (as in "hot stuff"). So, between his antics and the liquid courage, when I reached the end of the runway, I held my nose and shimmied down and after my turns, I did it again. I think the crowd really enjoyed it.
I was so glad my sister, Rena, and my friend, Amy, were there! We ut streaks of pink in our hair beforehand!
I got lots of compliments on my hair - other models kept saying that it was fun and edgy.
I chatted with OSU's President Ray. When I introduced him to my sister and Amy, I said, "Dr. or President Ray" and he immediately said, "Call me Ed". He remembered me from the Phyllis Lee Award day last January so he very graciously asked how my treatments were going.
I ran into the past and present breast cancer coordinators at the clinic, Sue Merrill and Joanne Stutzman. Also, Dawn Jones from Project H.E.R. I also saw the radiology techs and other staff from the Cancer Center there - all really friendly. I got hugs all around. My own oncologist was there, too, and I got to meet his lovely wife, who makes the most beautiful quilts which are on display at the Cancer Center and the Infusion Center.
I had fun. I was more uninhibited than I expected - I just decided to be silly and fun and channel my old softball team's energy from the Reedsport Tournaments years ago. A couple of people kept saying afterwards, "Wow, where did THAT come from?", meaning my holding the nose and shimmying thing. They complimented me on my smile and my hair.
It was fun. I am still really really tired.
A huge thanks to my sister and Amy for being there to support me, and to my sister for being my escort! I was so glad they were there! A big thanks to the organizers of Puttin' on the Pink. It is a big event, with lots of auction items, lots of community people, food, drink, decorations, etc. A big thank you to Linda Howard and Roseanne and Dawn for helping the models - thanks, Linda, for getting me out of my comfort zone! Thanks to the audience for supporting all of us models. Thank you for everything! I had a great time!
Saturday, October 16, 2010
I will be a model this evening for Puttin' on the Pink, a fundraiser for a local breast cancer organization.
At 1pm, my escort (my sister, Rena) and I will go to the Alumni Center to practice our walk.
At 2pm, dad will take Eddie to a birthday party.
Then, at 3pm, I get my hair styled by my stylist.
If I am done, I will pick Eddie up from the birthday party at 4pm.
At 5:00pm, Rena and Amy (a friend of mine) will come to my house to get ready.
At 5:30pm, I will go get make-up.
At 6:30pm, we have the cocktail hour/silent auction/snacks/wine. I'm wearing a black dress I got for a friend's wedding and will also wear a sweater I got at Macy's this week.
At 8:10pm, I go back to put on my model outfit. Models come out at 8:30.
We end about 10:00pm.
It should be fun!
Friday, October 15, 2010
In an earlier post, I mentioned that I thought the plan with the wound in my armpit was to allow the chemo to kill the cancer, so then the good healthy tissue could start rebuilding new tissue in my armpit. And, when chemo kills more of the cancer, the surgeon would debride the dead tissue away, making it a better environment for new tissue growth.
Well, I guess that's not the case. The surgeon, Dr. F, didn't want to resect (remove) the dead tissue surgically because it was attached to too many other structures (muscles, etc.). But today, after he took a look at the wound, there was a lot more dead tissue. He feels that I'm responding to the chemotherapy treatment rather well. He removed a lot more dead tissue. And, now the whole area in the armpit is "loose", meaning that it's not attached to the structures underneath. This means it will be easier to resect. The whole area is about 6" x 8" big.
Dr. F asked how long my course of chemo would be. Dr. K planned for me to have two months worth (3 weeks on, one week off). Dr. F felt that at that point, there would be enough cancer/tissue death for surgery to remove all the dead tissue. But since the area is so large, we would need to use a "lat flap" (tissue from my shoulder blade area) to replace the tissue in my armpit. That tissue will probably never come back on its own. That was something I guess I didn't understand before.
(My red blood cell counts were rather low and they were talking about doing a blood transfusion, but I guess it isn't low enough, so no transfusion. I also haven't had many side effects yet from Abraxane - just fatigue. My stomach gurgled a bit last night. Some constipation from the anti-nausea meds. But it's doable. We'll see next week what happens with my hair.)
So, sometime before Christmas, after two rounds of Abraxane and a couple of weeks to get my blood counts up, I will probably have tumor resection in my armpit, followed by plastic surgery to replace that tissue. I hope at the same time that Dr. H (the plastic surgeon) will be able to make my boobs level again (i.e., probably lower the left implant a bit) and take the corner off the scar at my belt line.
I am getting used to the idea of this surgery - Dr. F mentioned it last week, but at that point, it was hypothetical. But now it looks like it's reality.
I kinda wondered in the back of my mind about the amount of tissue death and if my body would be able to repair such a huge hole. So, I guess I know now.
I'm kinda relieved, to tell you the truth. I'm supposed to go to a workshop in Hawaii in February. This means that I will be able to go into the ocean! Because I won't have an open wound!!! This means I may only have an open wound for two more months!!! Even better!!!!
Thursday, October 14, 2010
I was part of a conversation recently, in a social gathering. I don't want to give details about who or where the conversation happened. I don't want to embarrass or shame people, so I will even avoid the use of gendered pronouns. I do hope that I can change peoples' perspectives.
The conversation had to do with new college students adjusting to roommates in dorm situations. In this case, one roommate liked to go to bed late - 3am - and wake up at noon while the other roommate had to get up at 8am for class.
Then it turned out that the night owl student did not have reliable parents - the mother was a member of what they call "the world's oldest profession" and the other had legal problems (I will give details of these legal problems later in the post. So the night owl student had for the last several months (or maybe even through his/her last year in high school) lived with friends. So, the night owl student really had no home to go home to on the weekends. This student also worked late hours - often until 3am - on the week-ends.
Think about this night owl student. What if this student was white/Caucasian? One might assume that the conversation might revolve around how this student was being responsible and was doing everything he/she could do to improve his/her life. Work his/her way through college. Get an education. Get a good paying job so they can be contributing tax paying members of society, etc.
But that wasn't what was said. Instead, the question was asked, "I wonder how this student could afford to go to college in the first place. I bet that student is using my tax-paying dollars."
Because, you see, this student was Latina. Her father had been deported back to Mexico. So, it was assumed that she was milking our tax system by getting financial aid because she was probably an illegal immigrant. But the people discussing the student don't really know for sure. They just made assumptions that because the father was Latino and probably illegal (since he was deported) that she was an illegal, too. However, any child born on U.S. soil is a U.S. citizen, even if their parents aren't.
See how the stereotypes surrounding immigration in this country play into peoples' perceptions of how their tax dollars are spent - and how they have automatic assumptions that good American paying citizens are being duped by non-tax paying people into getting an education or welfare dollars or whatever. The rhetoric is frankly tiresome. At least, for me. I don't usually get into these kinds of political arguments - and I don't intend to, really. But since this conversation happened in my presence, I felt I needed to address it.
You want to know my reply? I said to the individuals: "Well, you know, I got a lot of financial aid from the government as an undergraduate, and now I have a Ph.D. and am a professor at a university, earning a decent wage, paying good tax paying dollars."
Their reply, "Well, that's good."
Afterwards, I should have said, "With my example, don't you think supporting this student's education is a good investment for taxpayers? This person, with a good education, will pay more taxes into the system and because this person is grateful for the aid (as I have been), they will probably help mentor others like her so that they, too, can become good tax-paying citizens."
Think about it. Please. This night owl student is not just getting a hand-out. This student is also working very late hours so she can go to school. She's helping herself. We, as Americans, should celebrate that fact.
I just got my CEA results from last week, Oct. 5th. I didn't really want to see them since I had disease progression and have more little sites of cancer. I expected it to be at least 75, up from 50.9 in August, I think.
So, today, after the nurse accessed my port, I asked her to see if we had CEA results. And surprise surprise! IT WENT DOWN! My CEA is 41.6, and this was BEFORE the Abraxane.
But as I mentioned in an earlier post, the big tumors in my left armpit and my left lung really didn't get bigger. I think this means that the t-cell therapy worked on the large tumors that were present, but since the immunotherapy is not completely ramped up (and won't be until winter or spring), the t-cells aren't in enough numbers to attack the new little sites of cancer. Thus the Abraxane.
So, good news, I think.
I am waiting on lab results at the moment before getting the Abraxane. The surgeon, Dr. F will debride the wound tomorrow. Mount Herminator is looking more like an eagle's beak, with the high mountain overhanging a cave. Total weirdness. The body is an amazing weird thing, you know. Now that the infection is gone, my good spirits are back, and so is my energy. I like that. I can handle the wound. The needle stick today was easy. The port is less sore now. Life is good.
Here is the history. Anything 3.8 or less is "normal".
I just had my blood drawn today - we hadn't checked my CEA results for over 4 weeks. The number went up to 50.9, from 44.3 last time.
Dang! But another argument for starting a new treatment. Here's my history:
1/2008 - 1.2 ng/mL
3/2008 - 0.9 ng/mL
6/2008 - 1.0 ng/mL
8/2008 - 1.1 ng/mL (need to double check this number, but it was in that 0.9 to 1.2 range)
9/2008 - 0.5 ng/mL
10/2008 - 0.9 ng/mL
10/31/2008 - 1.2 ng/mL
11/28/2008 - 1.2 ng/mL
12/30/2008 - 1.1 ng/mL
3/2/2009 - 1.4 ng/mL
4/8/2009 - 1.6 ng/mL
5/5/2009 - 1.9 ng/mL
6/4/2009 - 3.0 ng/mL
7/2/2009 - 3.7 ng/mL
8/3/2009 - 4.2 ng/mL
8/31/2009 - 5.1 ng/mL
10/2/2009 - 5.7 ng/mL (or was it 5.8?)
11/2/2009 - 7.6 ng/mL
11/30/2009 - 10.5 ng/mL
12/28/2009 - 13.2 ng/mL
3/8/2010 - 22.9 ng/mL
4/22/2010 - 28.9 ng/mL
6/7/2010 - 46.3 ng/mL
7/19/2010 - 44.3 ng/mL
8/19/2010 - 50.9 ng/mL
10/05/2010 - 41.6 ng/mL
We like downward trending numbers! : )
Tuesday, October 12, 2010
Yesterday was my first almost-full day at work in about two weeks. I took it relatively easy and was happy that I had a few hours to prepare for my noon class. I think I am managing to get that class caught up with my string of absences. That feels good. I think I'm engaging the students, too.
Then, it was off to my appointment at the hospital to have the P.A.S. port inserted (installed?). There was some delay waiting for the IV nurse and then they thought that they had an emergency heart cath to do before me. The good news is that a softball buddy of mine was part of the crew who worked on me to put the port in my arm. Thanks, A! It was nice to have the distraction of chatting and visiting with you. They gave me some mile sedatives, so I think I was coherent, but relaxed. I only felt three pokes/pinches the whole time. It was over fairly quickly (i.e., in and out of the procedure room in about 45 min) but then they had to observe me in Short Stay for an hour to be sure I was recovering without any problems. I got home about six. So, it was a long day.
I had dinner and then rested in my room. I think I fell asleep at 7, woke up at 8, fell back to sleep until after 9pm, then I got ready for bed and was probably asleep by 9:30pm. I may have awakened once, but at 2:30am, I woke up to a weeping wound dressing. Sigh. Finally got up at 3:30 to change it and fell back to sleep at 4:30.
Then, it was up around 5:45 to get ready to go to Portland. Eddie had an appointment at Doernbecher's Children's Hospital for a check-up for his Marfan's Syndrome. A huge thanks to dad for driving - they didn't want me driving today because of the sutures in my arm. It was a good visit - his heart was fine. So, we continue to monitor him in case his aorta changes in the future. He will see the ophthalmology specialist in a couple of weeks.
We stopped at Macy's to look for a sweater/shrug/fancy jacket to go over my black dress for Puttin' on the Pink, which is on Saturday. I think I found a nice sweater, with big sleeves for the armpit and for the port. I need to put them on together to be sure.
We got home about 3:45pm and I've been relaxing since. Particularly since I now have diarrhea. Probably from all the meds yesterday. Sigh. My dressing also started leaking again; I need to change it, but I'm waiting as long as possible so it can last throughout the night. I wish . . . .
Sunday, October 10, 2010
Yesterday, I wrote 5 pages on a grant proposal and drafted the budget. I also had lunch with a friend - yummy Indian food! But later, my stomach felt a little bloated or full. I guess it's off from the Abraxane? It's better today.
Since I worked yesterday, today was a play day. So, mom, dad, and I went to Spirit Mountain Casino - played some slots and ate at the buffet; I had yummy salmon. I tried not to eat too much thinking that maybe if I erred for less food, I'd be less likely to feel bloated. I donated money to the Grand Ronde. Not much. Figure I have probably broken even over all in the last couple of months.
Then, we picked up Eddie. And, we've been relaxing ever since. Did laundry. I need to read some for class tomorrow. I needed to pick up some more dressings and spent $45 on them today. Sheesh. Having a wound is expensive business.
Tomorrow? Get ready for class, then have class, then off to the hospital for my P.A.S. port. Tuesday? We take Eddie to Doernbecher's for his Marfan's check-up. I see wound care on Wednesday and will also have acupuncture in addition to class. Then, Abraxane on Thursday. Puttin' on the Pink next Saturday. A busy week ahead, that's for sure!
Saturday, October 9, 2010
Well, today is a rainy day in the Willammette Valley. I feel the need to get out and about. But what to do, what to do?
I slept okay last night. Got about four hours then was awake for two hours, then back to sleep for four hours. So, that means I am up for something.
- work on a grant proposal, start editing some articles for my book, and read proposals
- shop for some appropriate cocktail attire for Puttin' on the Pink; my sis found a really pretty dress. I have a nice black one that will work, but the dressing in my armpit is noticeable. Maybe I will just wear a shawl or something over it. I also need to organize "girly-time with Rena and Amy" so we can all go together next weekend.
- maybe grab lunch with a friend
- write thank you notes to Tara, Cat, and Loretta
- work on a new mosaic
-maybe visit Eddie at Kids Day for Conservation
I need to return "Universe", a little stuffed giraffe that Miss Finn let me borrow to keep me company during the Abraxane treatment.
I would like to go to the casino for a bit . . .
Well, rather than talk about it, I guess it's time to get my butt in gear and DO something!
Friday, October 8, 2010
I'm doing okay today. Well, I got up in a bad mood because I couldn't get to sleep until midnight. And, I have to get up at 6:30am. I know how important sleep is and it tends to elude me recently.
But even though I thought I'd be exhausted today, I found I had more energy than expected.
Remember Mr. Exu Date (weeping wound)? Well, Exu is crying up a storm lately. My clothes and my bed linens don't like that, but it is what it is. It seems, though, that Exu has decided to run off and get married to De-Bride.
Exu and I went to the surgeon today, who proceeded to introduce Exu to "de-bridement". "Debridement" means to remove dead or infected tissue from a wound to help in its healing.
My wound care nurse started this process yesterday but she didn't want to go too far or too deep - that's the surgeon's job. So, the surgeon today took what he could, until he encountered pink tissue. He said he went about three inches deep . . . I don't want to know any more!
The other interesting thing that both he and I noticed is that some of the satellite lesions around the main lesion have grown softer after the Abraxane treatment, which may indicate that the cancer in there is dying. He also felt that there was more dead tissue in the wound, maybe due to the Abraxane. So, there may be a couple of signs that Abraxane is doing what it needs to do, which is kill the cancer. I'm monitoring the other swollen nodes - the ones near the collar bone seem the same size, but the node in the groin - and the lymphedema - seemed better. If I can notice these outward signs that it's working, I'll willingly go to the treatments.
It may be weeks or even months before the wound heals. It's going to be a process of allowing the tissue to die, debriding it, etc. He doesn't want to do a surgery because the area is way too big, if you count the satellite lesions. However, they will do a larger surgery if I get a pretty bad infection. If they did do surgery now, I'd need a skin graft and maybe even a Lat flap (where they take tissue from around my shoulder). But for now, I think the hope is that we continue with Abraxane, which will kill the cancer, the tissue will die, they remove the dead tissue when it shows up and keep the wound clean, and wait for the whole area to heal itself as the cancer goes away.
Speaking of Exu, he just wept through the dressing. Sigh. Off to change it. Have a great night and a good week-end.
P.S. I just changed the dressing. Mount Herminator has a couple of craters. A good thing . . .
Thursday, October 7, 2010
On my way to see the wound care nurse, I got a call from Radiology. They didn't have the P.A.S. port in stock. It has to be special ordered. This meant that my appointment to have the port inserted was canceled!
Yay! A reprieve!
I wanted to celebrate, so we went to McGrath's for lunch. Salad and fishermen's stew. Yum.
This gives me a few more days to recover from Abraxane and also from the infection next week. I'll feel stronger. It had been feeling like I was getting beat up - one thing after another. Yay! I may actually get some work done tomorrow.
The wound care nurse also felt that the surgeon needs to debride the dead tissue from the wound. It goes fairly deep into that lesion - about an inch. And, it's about an inch or more around. Dead tissue can be a nice place for bacteria to hide, so it's best to get rid of it. Maybe he'll also get rid of the dead tumor. Maybe I won't have as much of a dressing. Maybe I can actually wear something a little nicer next week for Puttin' on the Pink. I see the surgeon tomorrow morning. And, see what happens.
It may still be months before this thing heals. But if it gets smaller, I won't mind. Not one little bit.
Or, I could've titled it, "The Mind is Willing but the Body says maybe".
Or, I could've titled it, "I want to join the land of the living."
I had a good night's sleep last night - about eight hours. First time in at least a week or more. So, after I dropped Eddie off at school, I went in to my office to pick up a file and then to my Humanities office to pick up a file there. Because, you see, I want to start being productive, so if I bring it home, maybe I will actually get to it. I want to start writing. I want to start thinking about something other than my health. I want to think about work.
A good sign, eh?
But I feel a bit weak and shaky today. And, after running around for an hour, I'm kinda tired again. I figure if I can weather the next few days, I will enter a new normal where I can work and put all the health stuff on a sort of back burner - where I don't have to talk or think about it all the time. I will get into some kind of routine, which will feel nice, so I can plan ahead.
I haven't had Phenergan (an anti-nausea med) since dinner time yesterday. My stomach feel mostly okay. I do have some diarrhea.
This afternoon, I have the P.A.S. port inserted into my arm. They will give me a sedative, so I expect to be kind of out of it again tonight. I hope I recover enough so that I can do something tomorrow.
Oh, yeah, fever's gone. The wound is still not a pretty sight, but parts of what used to be a very hard lesion is now kinda soft and mushy. Not sure what that means.
See you on the other side . . .
Wednesday, October 6, 2010
I had insomnia last night - couldn't get to sleep until almost midnight and then I had to get up at 6:30. So, I've been tired all day. About 11am, my tummy felt a little gurgly. I didn't feel nauseous, just like the stomach was a bit too active. So, I took Phenergan and it was fine. I woke up a couple of times and at 5am, it was gurgly again, so I took another one.
I took Eddie to school and then came home and napped twice for about 30 minutes each time, then I took a shower, had lunch, then rested - maybe napped again - then picked Eddie up from school.
I wanted to go to qigong tonight, but I took Phenergan right before dinner (they said to do it about 30 min ahead of time, but I didn't) and my stomach felt a little upset again, so I rested yet again - maybe napped about 15 min here and there.
I've got stuff to do, but I can't seem to concentrate on it. I'd like to pay bills, read, do something that makes me feel productive, but it seems the most I can muster is updating my blog and posting on Facebook!
Here's to a more normal day tomorrow. Then again, I get the P.A.S. port inserted. So, I may be a little knocked out from the meds/sedatives they give me to do that. Maybe by the week-end, things will be back to "normal".
Tuesday, October 5, 2010
First, I'd like to thank dad for hanging out with me today and for picking Eddie up from school. Things took longer than expected because they were waiting for orders from Dr. K . . . but I didn't stress about it because I didn't have to be anywhere at any particular time.
They used my right arm because the left arm is too close to the open wound. They found a vein fairly easily. Then, they gave me saline, then the premeds (anti-nausea with a small dose corticosteroid). I finally got the Abraxane, then it was flushed, and then I got Zometa.
Two of the nurses I know were there - J, who worked with my sister at one time, and P, who introduced us to cob cottages. I guess P has decided to build a cob wall in her backyard. I told them about Mount Herminator - they laughed at my description and P called me a "Conehead"!! LOL I really like the nurses there. A pretty cool bunch of ladies.
We also had an ongoing discussion of the port. Dr. K doesn't want me to have it. But the nurses do. In the end, they thought my risk of infection was higher because of multiple needle sticks then if I got the port. I'm opting for a P.A.S. port. While many of their patients have chest ports, there are some that have the P.A.S. port in their arm and they love it. None of them have had infections.
So, I get the port on Thursday and then my next Abraxane appointment is the Thursday (the 14th) after.
I colored October's Mandala of the Month - appropriately labeled Yin Yang! - and I colored red spots where the CT shows possible places of cancer. I think colored yellow A's (Abraxane) flowing through the mandala to the red spots and then put them on fire. The A's were "alarms" that called the HT cells (Herminator-2 cells or t-cells) where there were hanging out in the lymph nodes. The HT cells were called to put out the "fires" in the cancer areas. The whole area was colored a spring green with a darker blue on the outside. That signifies healing.
I also finished coloring another mandala by Maureen Frank, the Mandala Lady. It was one I started several months ago. It had roses. The nurses enjoyed looking at the designs in the three coloring books I had and particularly liked some of the colors I used. We had a fun chat about home remodeling, painting, and choosing color.
So, it was a relaxing time at the ol' Infusion Center. Great nurses. Good company. I'm just tired. Stayed up too late last night (midnight) - anxiety and some frustration at the medical team. As my therapist said today, this is why this is why we need electronic medical records!!
I also saw my therapist and my acupuncturist today. Thank goodness for both of them! I think by talking through my frustration with them, I was better able to let go of that negative energy so that I could welcome the chemo so it can do what it needs to do. I'm imagining Abraxane sending the alarm to the t-cells and the two working together to shrink the areas of cancer.
Thank you's are in order: First, to my dad and my parents for taking care of me and Eddie this past week or so. Second, to the other cancer bloggers and all my friends who are keeping me in their prayers and thoughts! I appreciate it all! And, third, I thank the nurses and my acupuncturist - it's very nice to have more than just a professional relationship with them. I think I would call them friends if they were not part of my medical care team. Well, they are my friends. Fourth, I want to thank Cat who graciously agreed to take on my class tomorrow. I visited her and Auntie Cecilia and Uncle Aakagak today to give her the materials. Uncle Aakagak is really a happy baby and climbing all over things. Reminds me of when I went to King Island with Uncle Aakagak - he scrambled up the right side of Kuuk so easily - with seemingly no effort. Scared the heck out of me! Cat, that's why Baby Goo likes to climb! You need to start him early on rock climbing! : ) And, finally, thanks for Dr. K for putting up with multiple phone calls and questions yesterday. I really needed to hear it straight from him so I could make decisions. I don't like being kept in the dark.
Thank you all again, very much!
Monday, October 4, 2010
I saw the wound care nurse today - she feels everything is fine and she gave me enough dressings to last until Thursday.
I still had a low grade fever, but I still went into my class to update them on what's going on with me and to explain the film "The Fast Runner". They also started watching "An Inconvenient Truth".
Then I get a phone call from my doctor's office scheduling me for a port insertion on Thursday. WHAT?? Last we discussed, Dr. K said that I shouldn't have one!
I also asked whether or not I really should do chemo tomorrow since I still had a fever. To me, the Levaquin and Flagyl were not working, my immune system was depressed, and therefore no chemo. I get a call back from the nurse after they talked to Dr. K and he said, "chemo tomorrow". I then filled the nurses in on what had happened while Dr. K was out of the office and my visits with Dr. O and Dr. F. But still the message was not to delay.
I sat and stewed for about 30 minutes because first he tells me one thing last week and then tells me another. And, apparently, the docs from Thurs and Fri had not filled Dr. K in on their diagnoses and actions. So, I called back and said that Dr. K and I needed to talk and I was going to refuse chemo until I got the lab results and asked him about the fever and the port.
He called me back awhile ago. First, he said that he ordered the port because the nurses had called him and said that my veins couldn't handle Abraxane and I needed a port. Nice of everyone to talk to me about this - the nurses should've called me and/or Dr. K's office to tell me WHY I was scheduled for the port.
Then, we discussed the lab results. There's no evidence of an anaerobic infection or of an "invasive" infection (by which he means that it's gone into the blood stream, I think). He feels that my continued low grade fever is caused instead by inflammation and by my immune system trying to fight the cancer and keep any infection at bay.
He also felt that Abraxane won't affect my blood counts too much. So, Abraxane tomorrow, if my veins can handle it. I believe he also said that I may feel worse for awhile until I feel better. And, I will get a port on Thursday, that is, if the nurses felt it necessary, although Dr. K doesn't really want that to happen.
I also asked him if he has ever heard of a case of a body expelling the tumor and he said he hadn't. I asked him what might cause the necrotic tumor to raise a cone like that. He didn't really have an answer.
Okay, I need to begin my visualization of Abraxane, sending the alarm so the t-cells can attack the cancer throughout my body.
Sunday, October 3, 2010
The surgeon on-call called me with the preliminary lab results. Dr. H said, "It's a staph bacteria". I replied, "Oh great" (sarcastically). He responded, "Oh, no. Not THAT kind of staph, but the ordinary staph that lives on everyone's skins. They don't know yet if there is an anaerobic bacteria, too, or if this is antibiotic resistant. We'll know that tomorrow."
IN the meantime, I still have a low-grade fever. Felt chilly into the early afternoon. Have had a little Tylenol this morning and some Ibuprofen a couple of hours ago and my temp is still about 99.6.
Saturday, October 2, 2010
My temperature got as high as 100.7 so I called both the surgeon and the oncologist on call. In the end, they said that they wanted me to give the Flagyl and Levaquin time to work. At least another day or two. The surgeon said he would check on the lab results for the sample they took to culture yesterday. He would call me tomorrow once he found out anything.
So, I wait. I check in with the docs and the wound care nurse on Monday. If my temperature gets as high as 102.5, then call.
The surgeon also said I could take out the packing in the cavity. So, I did. I tried not to gag. I'm glad that's over and done with.
Sigh. I want this over and done with already. I want to get back to my regularly scheduled life.
I'm starting to get a temperature. I just checked it: it's 99.4 to 99.6, up from 97.6 to 98.4 earlier today. Then again, I had an Ibuprofen (one pill) last night because of aches and pains, one Tylenol at 5:30 when I woke up with a headache and then another Tylenol about 9:00 when the headache wouldn't go away. So, that artificially depressed my temperature.
If it goes up to 100.5 then I'm calling.
Thank you, Joanna, for your advice and for telling me your experience. I haven't been on Herceptin for two months as it exacerbated the pain in the armpit.
I am doing better today. No fever, so therefore no aches, pains, and chills.
I continue to take Flagyl, but I wake up with a headache and it took me almost to lunch for it to go away. It's also the most foul tasting pill I have had. If it so much as grazes the roof of my mouth, I about gag. So, now I really don't want to take it. Wish I had those lab results . . .
The wound is ugly and is draining like crazy. I do think that I will run out of dressings that keep the fluid in by Monday. That sucks because when it seeps out, I can smell it. It isn't a disgusting smell - sorta vaguely mildewy. And it gets on my clothes. My dressing is now about 6 by 8 inches. I have to psych myself up to change it, so I waited until 11am to take a shower. I have to look at it as if that thing isn't on me but on someone else.
I have been having pain in my right forearm. I suspected it was using my index finger to scroll up and down or side to side on my iPad. Also, because I can't use the virtual keyboard like a standard keyboard (I like to set my fingers on the keys to keep my place, I type a lot of garbage characters), I use my index finger to choose letters and my thumb to hit the space bar, but it often hits the n, m, or b keys, which is why some of my posts have those letters between words. After I posted my frustration last night, my forearm was throbbing, so I confirmed that it was indeed the way I was typing on the iPad. I end up backspacing a lot as I go, so I use my index finger a lot. So, today, I splurged a little and bought an iPad keyboard dock. I am now practicing on it. It's a bit stiff, but I like it and it's already saving my forearm.
I think that means I spend too much time on the computer, huh? : )
Heck, what else am I going to do when I need to rest!
It's nice out. I'm going to get Eddie out for a walk later - maybe to the Jackson Frazier wetlands. It's a beautiful fall day here. Hate to waste it resting in my room.
Friday, October 1, 2010
I saw the surgeon today and in the end, hem palpated the lesion and then decided to lance it and drain what fluid was there. He only got about 5-10 cc's of fluid and it was a bit creamy (I will take his word for it as I didn't want to look.) It wasn't pus. Then, he rooted around under his cut (about 4 inches around) and didn't feel any more pockets of fluid, only what he feels is a necrotic tumor. His diagnosis: a layer of bacterial infection ocher the dead tumor.
Now I am confused. One doc says one thing and the other says another thing.
He did take a sample to send to the lab. Not sure when I will hear those results.
He packed the hole with gauze in order to keep it from getting infected. I may or may not see the wound care nurse on Monday, depending on how things are going.
I need to keep an eye on my temp and if it rises again, I need to contact the on-call docs because that means the antibiotics aren't working.
He also felt that the armpit needs radiation sooner rather than later and wondered if I could do Abraxane and radiation at the same time. But that will be something to ask Dr. K about.
So, it's wait and see again. I got a bit confused with the "if-then" scenarios because there were several of them and they dependedmon each other. In other words, if this happened, then this is what we would do -then if something happened with that, then this was the next step. But if it didn't happen, then this was the course of action. Trying to keep the order of it all was a bit overwhelming. Will I get chemo on Tuesday? Or not?
Which just made me realize, as I typed thus, something I advise my grad students: don't worry about what's going to happen next year for the moment. Just focus on the task at hand.
That means, stay the course this weekend. Take both the Flagyl and Levaquin, watch for a fever, change the dressing when I need to, and rest. Next week will take care of itself.
I am such a planner and now that the plan, such as it was, is in the air, I have become discombobulated.
Live in the moment, right, P? (A friend who just emailed me today to offer encouragement and to remind me to live in the moment. Thank you, P!
P.S. Struggling with the living in the moment attitude. Truth is, I am feeling a bit like I have been abandoned by my medical team. All offices are closed for the weekend, but there are things I am worried about and want to know tomorrow. Like, is it an anaerobic infection? After I changed my dressing tonight, I am not sure the surgeon today is right. He thought that I wouldn't drain as much and it turned out I drained more and then used a lot of wound care dressings to try to keep it contained for the night. He was wrong about drainage and so could be wrong about the type of infection. I would like to know the lab results of the sample TOMORROW. On the other hand, I just remembered that bacterial cultures usually take a couple of days. I am also worried about running out of dressings. Then I worry about having to be hospitalized and thinking about coverage for my class. But I need to let go of that -hard to do when it is a class you care about- and let my colleagues deal with that if that happens.
The good news is that I have only had Tylenol since the morning and no temperature. I will cling to that.
Mom and dad and Rena, please don't worry. I don't really want to talk about it. It would help me tons if we didn't discuss too much in person. I want to save my energy to talk about other things and to take care of Eddie. Just continue to read my blog. I just think you understand it better if I write it all down rather than talk about it because sometimes I feel like you don't get the right message and it takes energy to correct you. Also, mom, I know you like to know my schedule - always a mom, right? LOL - so I will write it down. It will be easier than trying to say it in person. Just known that I love all of you very much. So really, let's talk about something else for a change? : ) I will try to get out of my own head enough to interact more. Love you!
So, last night, so as not to mess up with my sleep, I didn't do any research on anaerobic infections. I was also way too tired.
This morning, I got curious enough, so here's the first site enlisted on Google: http://www.faqs.org/health/topics/37/Anaerobic-infections.html
Good thing I waited until today when I don't have a fever and am rested! Words like gangrene, pus, infections in deep cavities, tissue destruction, etc., are all in the description. If not treated, it could result in even bone destruction.
So, treatment is to take Flagyl and the fine needle aspiration to remove any pockets of pus. I see the surgeon at 3:30pm so we can more.
Based upon what I read, Mount Herminator is probably pus, or maybe it is a pocket of gas production.
So my metaphor of a volcano was pretty much on target.
Imagine if I didn't ask for appointments yesterday when the wound changed?