Please insert your own expletive in the title above.
I had a visit with the plastic surgeon later today. He didn't really give me a chance to respond or explain, so I'm writing this letter to him. He may never see it. But I have half a mind to send the link to his office staff so they can show him. Writing this letter is passive-aggressive, I know, but warranted. I won't use his name, but he and probably others in town will know of whom I speak.
This morning, you were condescending and dismissive to me. I cried a bit, not because you said that I wouldn't be cured but because you didn't seem to care.
I understand that the amount of tissue that will be removed is quite large. I understand, too, that this will require more tissue, which means a "free flap" procedure (one in which they have to do microsurgery to connect the blood vessels) rather than a LAT flap (in which the tissue is still attached to its own blood supply). I am okay with being referred to OHSU where they could do a free flap procedure. This email is not about your decision or about what you can or can't do. I understand the reasons why - I have a PhD, after all, and am fairly well read about my disease, the treatments, and how to cope with my disease.
This letter is meant to chastise you and to ask you to be more empathetic and caring to your next patients.
I have lived with metastatic disease for three years. I know that I will never be "cured". I know that I will be in some form of treatment for the rest of my life, which I hope is a long one. I have faith that I will enter into "stable disease" status in the next six months or so.
If I were you, I would be careful about characterizing the surgery to remove the diseased and dying tissue in my armpit as a "toilet job". I fully understand that the purpose of doing this surgery is to help me get rid of this open wound. I also think that by getting rid of the diseased tissue in the armpit, we give my body a better chance of containing the disease that's left elsewhere in my body because we remove the biggest source of growing cancerous cells. Less cancer means that we give my immune system and whatever chemo I have a better chance - it's like getting rid of 2/3 or 3/4 of the enemy forces.
As I mentioned, I believe I will achieve stable disease soon.
I am also single.
I am interested in dating again.
To that end, I would like to have as normal a looking body as possible. I don't think it's too much to ask, while I'm having plastic surgery anyway, to keep the implant and to fix the "dog ears" (i.e., what's left of the fat tissue at my waist).
Your attitude and your words, however, made me feel that since I will never be "cured", that I should be happy with the reconstructed armpit, that I should aim instead for quality of life and just move on. You implied that I should give up on the idea of having an implant and that, in the end, it doesn't matter about the dog ears. To some extent, you acted as if I wouldn't be around very much longer and therefore why worry about the cosmetics?
You said (and rightly so) that the bigger concern is my armpit. I agree completely.
But that doesn't mean that the implant or the other plastic surgery fixes are trivial to me.
As I said earlier in the post, I want to look normal.
Today, you acted as if what I wanted (to keep the implant) was not possible and you seemed surprised that I would even ask to keep it.
In terms of "quality of life", I would like to look and feel normal in my clothes. Who knows how many years I have left? I fully expect to be alive for a long time. Therefore, my quality of life would be improved if I felt more normal.
I cried because I was disappointed that you didn't seem to care about me and what I might want. You were dismissive and condescending - you talked to me as if I didn't know that I would never be cured. I know that better than anyone else - you didn't have to tell me that.
I am glad that you won't be my doctor any longer. It's best that we part ways. But for any future unsuspecting patient of yours, get off your high horse and treat them like human beings. There are a lot of smart women like me out there. Don't be threatened by us. Take the time to ask what we want and tell us what's possible in a sympathetic, caring manner. Don't dismiss us. Don't be condescending. Please. We deserve more than that.
Monday, January 31, 2011
Please insert your own expletive in the title above.
Sunday, January 30, 2011
This is an update on my wound. It's still big. It's still draining.
The surgeon noted that one of the satellite lesions seemed bigger. In fact, all the satellite lesions seem to be growing up and out. I think this is due to inflammation, though, and not necessarily to cancer growth. If you recall, last summer, after I had the t-cell (Herminator-2) cell infusions and then I had Herceptin, I had an "inflammatory flare" - the whole area became more swollen as part of an immune response. The fact that almost all the tissue in this area is getting darker with each dressing change tells me that there is tissue necrosis.
So, even with the rising tumor marker number, I'm trusting the CT scan.
Then, there's the lesion near my breast bone, on the scar of my TRAM flap. The CT scan said it was "less prominent". However, it feels like it's sticking out more. My friend, T., said that maybe what's happening there is that as it shrinks, it's contracting and therefore sticking out more. I like that explanation. The tumor is more at the surface than deep.
When Dr. K and I looked at the CT scan, it seemed like there was a layer of good tissue between my ribs/chest wall and the tumor. It also seemed like there was a layer of good tissue under the breast bone lesion.
I mentioned these observations to my acupuncturist the other day and I said it seems as if my body is pushing the cancer out of it. She said, "or maybe your body is walling itself away from the cancer".
Either way, I like the idea that my body is protecting itself, whether by walling itself up or pushing cancer out. I even think that since the wound is about 6"x4" big, the body is finding the biggest or most convenient opening to push out the last of the cancer. So, while it's really kinda yucky to see the bulbous masses swelling up and out in the wound, my visualization is kind of a good one - I picture all sorts of oompa loompas (see my visualizations in the wound in my right breast in 2008) and other unusual entities gradually cleaning up the cancer all over my body, pushing or even escorting or sweeping those nasty cells out toward my armpit. It reminds me of sweeping dirt out of the door of a tent or a cabin.
Yep, that's what's happening in my body. It works in mysterious ways!
Saturday, January 29, 2011
I actually slept okay last night. I went to bed about 10:30 (apparently the steroids didn't kick in), woke up about 2pm, went back to sleep about 3 and then woke up every hour until 6:40. So, about 6 or 7 hours all together.
I did some work on the computer - had to file a claim and then changed my profile pic on Facebook (still need to change it for the blog), then Eddie and I ran some errands. We want to start Eddie on some music lessons, so we went to the music store to see what instruments he might like. In the end, he would still like to learn how to play the harp. There's a music teacher who might let us rent one, so I'll look into it in the next couple of weeks.
Then, we checked out snorkel masks, found a wii game that he wanted, then lunch. Afterwards, I worked on taxes all day, although I'm kind mad with how H&R block set it up - I can't go directly to the forms themselves and read the instructions. I'm stuck in the interview part. I need to look into it more tomorrow.
After dinner, we watched Mamma Mia - mom and dad got me the Blue-ray movie for Christmas. It was fun hearing the old Abba songs! Now, I'm catching up on my blogs.
Tomorrow, will relax in the am, maybe look some more into the tax situation (trying to figure out if I can also claim dad on the taxes so I can get a bigger refund), and then Eddie and I are heading to laser tag in Eugene, where we will meet one of the other Puttin' on the Pink models and her 9-year-old son. I'm sure they will have fun and M and I can visit!
Well, no other news. I'm just gonna get ready for bed! Good night!
Friday, January 28, 2011
Just got my CEA tumor marker. It was 44.3, tied to the third highest it's ever been, up from 17.1 last month. Sheee-ittt!
On the other hand, I am comforted by the CT scan results this week.
Tumor markers can all of a sudden spike when a treatment is working. The CEA in particular measures the amount of dead cancer cells (cancer embryonic cells) in your blood. I started Herceptin between the last tumor marker test and this one. A new treatment - and its effectiveness - could explain the spike in this number. At least, that's how I'm interpreting these results, especially because of the CT scan which showed 1) scars where tumors used to be; 2) stable disease in the bone marrow; 3) shrinking tumors; and 4) no new spots.
Anyway, here's the 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
11/04/2010 - 7.1 ng/mL
12/03/2010 - 3.4 ng/mL
12/30/2010 - 17.1 ng/mL
1/28/2011 - 44.3 ng/mL
Would you call that a "spike"? From 17.1 to 44.3? I think I would ...
It's been a somewhat busy week - but then when are't they?
Eddie had his Science Fair earlier this week. He received a "red ribbon award" for his project, meaning he was in the 2nd highest 25% of his class. He just didn't elaborate very much on his conclusions, which was the main reason he was marked down. But a little birdie told me that one of the judges said that Eddie's project was his favorite. His project was "Game On!" in which he tried to find out which position would give him the fastest time on Mario Kart Double Dash. His results was sitting on an exercise ball, then sitting on a stool, then standing, then lying down.
I've been working on taxes, too, in the evenings. Organizing receipts and creating spreadsheets. Ya wanna know how much I spent on medical expenses? About $7,100. This included deductibles (or out of pocket expenses), what insurance didn't pay for acupuncture, pharmacy, dressings, dental, travel to Seattle, and Chinese herbs and supplements. (Criminy, no wonder I wasn't able to pay down my HELOC very much!)
Last night, I hung out with my volleyball buddies before the game, then I watched the game, and then we hung out some more afterwards. The first evening in a long time when I felt mostly normal and could stay out that late (i.e., 9:30pm). Yay!
It's interesting. As my loyal readers know, I've been feeling very fatigued and also tired of being tired, and maybe discouraged because I could see that the tumors in my left armpit aren't shrinking as fast as I might want them to. I haven't felt really social because of that. However, this week, with the good news on the CT scan, the last Abraxane treatment (and being able to start growing my hair again), the news that I'll be done with the wound in about six weeks, etc., I suddenly feel more social, so I was cheery last night, joking around with my friends, giving them a bad time while they played. Happy to be alive, in other words.
I think between the good news and going to Hawaii . . . I'd have to say that life is good. Thanks to everyone who continues to keep me in their thoughts and prayers!
I'm here at the Infusion Center, waiting to get my chemo. Turns out that they're not getting a good blood return on the P.A.S. port in my arm, so they put in some "TPA", which will break up the blood clot which can sometimes form on the catheter.
Today is my last HAZ treatment - yay! I may go back on it, but for now, I won't have Abraxane until sometime after surgery, if at all. I'm excited about the prospect of my hair growing back.
My blood work does show that I'm slightly anemic. My RBC (red blood cell) count is 3.19 x 10 to the 6/uL (normal is 3.9 to 5.1); my hemoglobin is 9.8 g/dL (normal is 11.5 to 15.4); and my hematocrit is 28.2% (normal is 36 to 46).
Also last week and through last weekend, I was taking 10 mg of melatonin at night. My normal dose is 8 mg. I hoped it would help me sleep better, but in the end, I think it was causing me to feel that dead-dog tired fatigue. I've had more energy this week since I went back down to 8mg; it probably also has to do with having two weeks to recover from the HA treatment on Jan 14.
I spent some time yesterday organizing all the reservation numbers for our flights to HI and for the car rentals. I also looked up the map and directions to the place we're staying on Kailua Beach on Oahu. I started getting excited. I found out that we won't be too far from another beach where we can kayak out to some rocks, so I think we will definitely rent kayaks one day. I also saw a satellite image of the beach - it was a sunny day, the water was blue, and the beach was light-colored sand. Heaven.
I'm worried about getting too much water while kayaking, though, because of the wound. It's about 6" x 4" (at least) large, which means that microbes could have a field day in the wound and I'd end up with a nasty infection. I need to think about the best way to protect that area . . . a friend suggested a dry suit, so I might see if it's possible to rent one.
I was also contacted by someone (S.) that I went to high school with who now lives in Honolulu, so we'll probably at least get together for coffee or something. I may also try to have lunch or something with my friend's parents, who live north of Honolulu. I might meet up with the editor of an anthropology book series. We will go to Sea Life park. I would also like to go to the swap meet/flea market at Aloha Stadium, if it still exists.
Mostly though, I expect to hang out on the beach, read a book, watch Eddie play in the water, wade in the water myself. Plenty of sunscreen for my neck and other exposed areas of my bald head, too.
Tuesday, January 25, 2011
So, what's the equivalent for sight! Maybe a "sight for sore eyes!" But that doesn't seem right.
Ah, what am I talking about? Well, it's the CT scan report, which is as follows:
1. There has been response to this patient's treatment regimen. The pulmonary nodules involving the lingual and left lower lobe are dramatically less pronounced. The irregular and linear type densities which remain may reflect post treatment changes/scarring. The conglomerate adenopathy noted within the left axilla is not completely visualized, however it also appears less prominent. There is a low attenuating structure noted more anteriorly and inferiorly, which may reflect necrosis. In addition, the right peristernal lesion has decreased in size. The small lesion involving segment 5 of the right lobe is also much less prominent.
2. No new nodules, masses or regions of adenopathy are identified.
3. Stable appearance of the sclerotic lesions involving the axial and appendicular skeleton compatible with osseous metastatic involvement."
There's a 4 and 5, having to do with the evidence of surgeries and my P.A.S. port in my arm.
Earlier in the report, it said that "The visualized liver and kidneys appear unremarkable."
Translation: The densities they see in the left lung probably reflect scarring; the lesion under my armpit, the right "peristernal" lesion (i.e., on the right side of my breast bone, near the TRAM flap scar, something in the right lung (which I didn't note before) is also smaller. The lesion that is "anterior and inferior" is a satellite lesion in the armpit, located lower and toward the back looks like "necrosis" (i.e., dead or dying tissue). I do have multiple lesions in my bone marrow, but it appears stable (and probably will never change). Most importantly, no new nodules have been identified.
Monday, January 24, 2011
Or, aka, "Some Good News and Some Expected News".
The good news is that the treatment regimen appears to be working systematically, that is, throughout my body, in my system. There appears to be only scar tissue in the lungs now - *maybe* one spot that may still be a tumor, but for the most part, the areas are smaller and it looks like scar tissue. I had multiple spots in my lymph nodes in early fall - no mention of those on this CT scan. And, a suspicious spot on the liver (which Dr. K didn't think was a tumor) is gone.
So, the treatment is working at some level. That made me feel better about how fatigued I feel. I'm not quite bouncing back from the last chemo - it's getting harder to do so. Even today, ten days post treatment, I still feel dead dog-tired.
But the CT scan still shows a mass under my armpit - which I can see, so obviously I knew it was there. The good news is that the diseased tissue doesn't extend all the way down to the bone - there's a nice layer of tissue so the surgeon might be able to get 90-99% of the cancer there. Also, there's a spot that is on the scar tissue of my TRAM flap breast, near the breast bone, is apparently a tumor. It's grown in recent months, but I didn't really notice it until a month ago. It's a hard nodule about 3cm long and maybe 2cm wide. Plus there are spots in the bone marrow, but it doesn't look like there are more of them since the last one.
So, what's the plan, man?
Because February is a busy month for me with all sorts of work and fun activities, and the surgeon, Dr. F, is away at a conference around March 3-4, it looks like I will have surgery the week of March 7. That will give me three weeks of recovery before classes start March 28.
So, I have my last HAZ treatment on Friday the 28th - Herceptin, Abraxane, and Zometa. Then, I will have another Herceptin treatment upon my return from Hawaii on Feb 14th and before we go to Eddie's school tournament. Then, I'll have three weeks off of any chemo before surgery.
I'll visit the radiation oncologist in mid-February because we might do some radiation to get rid of any residual cancer in the area. And probably do radiation on the nodule near my breast bone. That may happen through the beginning of spring term.
There's some light at the end of the tunnel, in other words. In six weeks or so, I will be done - you hear that, DONE - with the wound in my armpit. I'll say that again, DONE with dressing changes in about six weeks. DONE.
Can you tell? I'm happy about that.
Afterwards, we just need to start thinking of what to do next. That'll depend on where I stand.
This also means that beginning two weeks after my last Abraxane treatment, around mid-February, my hair can start growing back. That's good because I think my eyebrows and eye lashes are definitely thinning out lately. I haven't had bushy Eskimo brows in a few months! LOL
I also hope that Dr. H, the plastic surgeon, can get rid of the dog ears at my waist since he will be there anyway taking tissue from the Lat area for a LAT flap. He may also need to take out the implant and put in another one since Dr. K and I could both see that the cancerous tissue went all the way to the implant. I hope that they make implants that are flatter - i.e., not so round - since my TRAM flap boob is flatter rather than round. He said he can also lower it so that I'm more even.
Looks like it will be a good spring for me - no wound, maybe more even boobs, no dog ears, and hopefully, NO CANCER!!! Well, there will always be evidence of cancer in my bone marrow. But let's say NO GROWING CANCER!!
Sunday, January 23, 2011
I mentioned last week that my wound has an 8-pack a day habit. Now, that's only the number of packages of drain sponges I use each day. But there are other dressings that I use. I decided to write this post because I told my friend in Hawai'i that I would need to bring a suitcase for all my wound dressings and she said something like, "we have a Wal-Mart here that you could buy what you need". So, I told her that I had special dressings and that I get my dressings through a wound care supply company that bills my insurance directly. And, then I flippantly added, "I go through about $100 in dressings a day". In the end, that was an exaggeration, but not by far. I use about $22 per dressing change or $44/day. So, here's what I use everyday these days:
- 1.25 oil-emulsion non-adherent dressing (3" x 3") - This goes on the open skin and won't cause further degradation or bleeding since it shouldn't stick to it. The wound is big and there's a satellite lesion that has started to bleed so I cut one of them up into quarters to put over the bleeding part.
- 4 packages of AMD (anti-microbial) drain sponges (4" x 4") - This catches all the drainage and keeps little bacteria from growing. This goes over the oil emulsion dressing.
- 1.25 Mepiplex foam dressing (6" x 6") - I use this to hold the drain sponges in place. It also absorbs drainage and the adhesive doesn't stick to the skin. Unfortunately, when it drains a lot, the fluid causes the adhesive not to work, so I can't use it alone. But it's great to cover the sensitive (i.e., degraded) skin and not cause further drainage.
- 1 Suresite transparent film dressing (6" x 8") - I put this over over the Mepiplex in order to help keep the drainage from seeping onto my clothes. This is hard on the skin, though, so I only put the adhesive part over healthier skin. This is big enough to have about 1/2 to 1 inch of transparent dressing that is longer than then the Mepiplex on each side, which helps prevent seepage.
- 2 Suresite transparent film dressings (4" x 4.5")- I cut each one in half length-wise and use these halves to give a transparent overlap to the top and the bottom of the Mepiplex to prevent drainage.
Oil Emulsion dressings (3" x 3") are about $0.55 each @ 1.25 per dressing change = $0.69
AMD drain sponges (4" x 4") are about $0.56 each @ 4 packages per change = $2.24
Mepiplex foam dressing (6 " 6") are about $9.95 each @ 1.25 per dressing change = $12.44
Suresite transparent dressing (6" x 8") are about $4.63 each @ 1 per change = $4.63
Suresite transparent dressing (4" x 4.5") are about $0.93 each @ 2 per change = $1.86
So, that's $21.86 per change, two changes per day = $43.72 each day x 7 days a week = $306.04 a week.
Thank goodness for insurance! I order directly from the wound care supply company, who then calls my doctor themselves to get the prescription or order and then they bill my insurance directly. There's no way that I could afford this on my own . . .
Saturday, January 22, 2011
I found out this morning that one of my fellow bloggers, Daria Maluta, who also had metastatic breast cancer, died early this morning. She reached out to many people and had many people following her blog and lots of friends on Facebook. She will be missed. She was participating in a clinical trial and while it seemed effective on her liver mets, it may have been too much for her body.
Daria blogged at Living with Cancer. Please send her family our thoughts and prayers.
Friday, January 21, 2011
I didn't sleep well at all last night - too much caffeine I think - and then had to go without eating for my CT scan this morning. So I was not in a good mood at all. I ran into work to do some accounting stuff, then went to the scan.
I got mad at the IV nurse because she couldn't get blood return using the port in my arm - and yet the nurses at the Infusion Center haven't really had problems - so she stuck me twice in the port but rather than be gentle, she just jammed it in. Then she try to get blood by pressing hard on the port - ouch - like three times. She gave up and then decided to put in an IV on my other arm, right on the bone. Ouch again!
She was brusque, didn't apologize for her roughness, and then left.
I lay there crying in anger - and I had to be still for the CT scan - because I was just so tired to do much else. I got through the scan - it went fairly quickly when all was said and done. By that time, I had gathered myself and then told the tech I thought she was unnecessarily rough. But I said it calmly and didn't blame him. He apologized for her. Next time, I may get the IV started at the Infusion Center, where the nurses are compassionate and friendly and I know them. Then walk ocher to CT with everything ready to go.
Then, in catching up on other blogs and read about Daria, at Life With Cancer. She lives in Edmonton. Just last week, she was feeling melancholy because she felt like she was deteriorating. Unfortunately, it looks like she was right - her husband posted for her, said she wasn't able to post herself, and she was going to Hospice.
Damn cancer. Please send good thoughts and prayers to her and her husband. She has been fighting this for a long time, was always friendly, sweet, and supportive. She will be missed.
Wednesday, January 19, 2011
I saw Dr. F, the surgeon, today. He agreed that while the chemo seems to have stopped further growth of the tumors, it isn't shrinking either.
So, we talked about going ahead with surgery. Because of my commitments through February (and March 2 - I want to see Sheila Watt-Cloutier, from President of the Inuit Circumpolar Conference, when she comes to campus that day), it looks like we might shoot for the week of March 7 for surgery.
But in my last post, I may have more tissue degradation and bleeding which might argue for doing something sooner . . .
We'll know more after my CT scan on Friday. And, after I talk to Dr. K on Monday.
As I said in my earlier post, I have been tired all day. A deep fatigue that I couldn't shake with caffeine. There is an ache in my shoulder - I think there's lots of inflammation there, which I think is a good thing. The ache isn't bad enough for me to use Tylenol or Ibuprofen, although I may if it doesn't go away in about ten days.
I was supposed to go play Bunco tonight at a friend's house. But in the end, because of how tired I was, I decided to stay home and rest. (I'm trying to remember what Joanna said her doctor said, if you are experiencing fatigue, that means Herceptin is working.) Then, I decided to get into my jammies and then I looked at the dressing - I saw the surgeon today and discovered that the whole dressing had pulled away from my skin on the bottom, so then I had to change the dressing.
I took the dressing off (it was fairly soaked) and then one of the larger satellite lesions - I've been watching it for a few days because it seemed like the skin was deteriorating - started bleeding. I used one sheet of a drain sponge to try to stop it and it took several minutes before it did.
I was a little freaked out. I wondered what I should do in case it didn't stop bleeding. I'll call the surgeon tomorrow and ask for advice.
Of course, it makes me wonder things like: Will they want to do surgery sooner rather than later? What if more of the tissue dies? Will they want to remove it so that I won't have to deal with bleeding? But if they do surgery, I won't be able to fly - I don't think - and I'm supposed to go to Hawaii in two weeks.
Okay, I won't borrow trouble until I know more. But bleeding cancerous tissue doesn't seem like a good thing? Well, maybe it is, but how do you control it? I will post about my visit with the doctor later today.
I was going to post about how tired I feel today - I felt fine yesterday, didn't over do it, but probably had too much caffeine - but I don't want to talk about that. Suffice it to say that I'll need caffeine to get through today.
But one of my friends posted on Facebook how "dag nab" excited she was about something she was doing later this evening. Then one of her friends (and now one of my friends) posted that today didn't really feel like a "hump day" but rather a "hunker down day". Then some of her friends started joking - one person said he was a hunk but his wife corrected him to "chunk" so it became Chunker Down Day.
Then I saw that the "dag nab" friend posted a link to a BBC comedy sketch on YouTube. It was about an older guy whose blackberry wasn't working. Let me see if I can get the link up here:
My Blackberry Is Not Working
I couldn't copy the link at the moment - will get to it later today - but if you search on YouTube under that title, it's for a program called "One Ronnie", I think. It's quite funny. It helped me to turn my day around.
Tuesday, January 18, 2011
Caroline, over at Caroline's Breast Cancer Blog, posted this link about metastatic breast cancer patients, with some interesting statistics.
First, the median age of survival after diagnosis is 26 months.
Second, only 1 in 5 survive past 5 years.
I was diagnosed with metastatic disease almost three years ago - about 35 months and 2 weeks. So, I'm past the first statistics.
And, it's my intention to go well beyond the 5 years.
I know a few other bloggers who have survived past the 5 year mark. So, I know it's doable.
Here's to continuing to beat the odds, ladies!
Monday, January 17, 2011
I woke up this morning to a wet shirt - the damn dressing didn't hold all the leakage and I had just changed it yesterday evening, around 6pm. In other words, the damn dressing didn't last 12 hours or so. The fluid found its way through a small fold in the clear plastic adhesive.
The fluid also got on my sheets.
When it leaks onto my clothes on in my bed, I just feel so yuck - dirty and disgusting. I can't wait to change my clothes and wash my sheets.
So, I woke up in a bad mood today. Not only do I feel yuck, but it means extra work. It takes about 15-20 minutes extra to change the dressing and then more work to change my bedding, wash the sheets, wash my clothes, etc.
I got better things to do with my time.
The only consolation, I think, is that the drainage represents dying or compromised tissue. That tissue has cancer. One presumes that means that the chemo is working to kill the cancer in the skin, making the skin break down, and causing increased drainage.
In the last 24 hours, I've used 7 packages of drain sponges - about 3.5 packages per dressing change. My wound has a 7-pack-a-day habit. That's about a 7-fold increase in drainage compared to this time last week.
Criminy. When I go to Hawaii in a little over two weeks, if this continues, I'll need a separate suitcase just for dressings.
Sunday, January 16, 2011
Since I was in the middle of The Girl Who Played with Fire yesterday - and had the sum total of 2-3 hours sleep (thank you steroids!) - I decided yesterday was going to be a "lazy day".
So, what did I do? Read most of the morning and then most of the evening. Got some supplies for Eddie's Science Fair project. Ran into some other parents at Eddie's school who were doing the same. Then spent most of the afternoon and into the evening working on that with him. Writing up things, printing it out, cutting it up, and gluing it on the poster board.
I only ventured out once.
It was kinda nice. I feel pretty relaxed - and while there are work projects hanging over my head, I don't feel too stressed about them.
I really need to do this more often.
Friday, January 14, 2011
One of my blogging buddies posted this parody song. Love it!
Joanna's Parody Song
Remember that granulated tissue* - the thing growing up and out? - in which I wondered if it was a new lymph node or a new boob?
Well, I posted a link to my blog post on Facebook and one of my friends responded with, "I'm a seamstress. I can make a bra for the growth."
That made me chuckle!
Then yesterday, I posted on Facebook that my wound is draining "buckets" and then she wrote, "Oh, great. Now I have to make a diaper, too?"
I wrote back, "Yes. Can you make it out of Sham-WOW?"
She wrote, "Of course. Is neon yellow okay?"
Ha ha ha ha.
Speaking of the amount of drainage, I wrote on Facebook this morning that the wound is now a "3 sponge" wound. However, I think this is funnier:
My wound is now a 3-pack a day drainer. I had been getting by with one pack of drain sponges a day for several weeks - and even then they hardly got soaked. But now? When I got home from work yesterday, my dressing was already leaking with two packages. So, I upped it to three packages.
My wound has a 3-pack a day habit.
I'm going to have a CT scan next Friday. Because the contrast is hard on the kidneys, they drew blood for a Chem-12 panel as well as a CBC. I noticed that one of the measures (like for sodium or potassium or whatever) was for something called a "BUN". (I immediately thought of "bum" or "butt".)
Fortunately, my BUN is perfect! (BUN is "blood urea nitrogen".)
*The nurse, K, told me today that with open wounds, when the body is trying to reconstruct the tissue, i.e. granulated wounds, the granulated tissue sometimes goes "crazy" and grows all sorts of weird bumps and lumps.
The body sure is weird, eh? I have granulated tissue that needs a bra; the wound needs a diaper because it's developed a 3-pack a day habit; and my BUN is perfect. What more can a girl ask for?
Wednesday, January 12, 2011
I saw the wound care nurse yesterday - we changed the dressings we're using again because the wound started draining more the night before. Sigh. I'd gotten used to one dressing change per day with a minimal dressing. Now, it's back to more drain sponges to absorb the drainage.
I saw the surgeon today and he took a look at the wound. He felt that the satellite lesions near the back were softer. He saw that there was more white tissue that might be slough but he didn't see anything to debride. Dr. F also thought that the increased drainage was a good sign that the chemo was working to kill the cancer.
Also that red area that grew a white tip? I thought it might be cancer, but he didn't; instead, he felt it was granulated tissue - i.e., tissue that was trying to regenerate.
Really? That's an awfully unusual shape for new tissue - a long skinny bump? Am I trying to grow a new lymph node? Better yet, maybe my body's trying to grow a new BOOB!! Ha!!
(Gotta keep a sense of humor!)
He doesn't know how deep the cancer extends, so he's ordering a CT scan. I'll probably have that in the next week or so. Dr. F wants to know where the cancer is so he can make a decision about surgery. I'm curious, too, to see where the cancer's at. I fantasize that it's only under my armpit and the deposits in my bone marrow. I hope that it's gone from my lungs and liver.
My February is very busy so I don't think I'd have surgery before the beginning of March. I'm in Hawaii Feb 2-11, at Eddie's school's tournament Feb 16-18, Las Vegas Feb 20-22, and at a cabin in the woods co-writing an article Feb 25-27.
So, in the absence of any other explanation, I'll take Dr. F's opinion as an encouraging sign that treatment is working.
Tuesday, January 11, 2011
Part of the reason why I didn't sleep on Sunday night, I think, was because of all the excitement from Sunday evening. You see, I had a henna party at my house!
I have heard of people - women mostly - who sometimes get tattoos on their head when they become bald from treatment. So, rather than doing something so permanently, I decided it would be fun to get a henna design on my bald noggin.
I decided on a lotus flower - I want to know more about the symbolism of the lotus flower; I know that in Buddhism, there is an association with enlightenment. I also liked the idea that its roots are in the mud and muck and yet, here is this beautiful flower rising above it all. It seems an appropriate symbol or metaphor for someone who has cancer, doesn't it? That there's something beautiful that can grow out of something ugly. Or, even the idea that the ugly has a purpose, which is to support the growth of something beautiful.
So, I had a group of friends and family over on Sunday evening and a wonderful henna artist, Kailyn, who owns her own business here in town called Mehndi in the Morning, came over to create designs for all of us.
I changed my profile pic here on the blog to show you what my design looked like on my head - after removing the henna the next day, it's a nice light brown color. I shows up better with the dark, so I decided to use that image.
Here are the other designs that friends and family chose from our evening - I won't identify the people since I don't have their permission. I figure I can share their designs with you, though!
The first is my wrist. The design turned out a nice brown!
We had a great time . . . and now I'm seriously thinking of getting a tattoo on my head. I know it'll be there when my hair grows back. And, if I ever lost my hair again, I'd have something there.
At any rate, thank you so much, Kailyn! The designs are beautiful! I appreciate your time and effort!
Monday, January 10, 2011
When I posted the other day, I stated that my mood was generally good. I have to say, though, that I have had a couple of days (today and last Thursday) when I felt out of sorts.
Both days, it was because I was tired and hadn't slept well the night before. I tend to kick myself when I don't because I see it as my fault when I can't sleep. I gotta stop punishing myself, right? So, I need to change some habits - like not eat sugar or have more than one diet pepsi each day and also to do qigong. Make all of that habit so that I can sleep better.
I also think I'm a little discouraged with this treatment regimen. The side effects are getting worse - more neuropathy in my fingers and also I had blisters on my feet from not having good shoes. My face has been breaking out - from a Chinese medical perspective, it means I have "toxic heat", which means a build up of nasty chemicals from the chemo. I've also been noticing that I have dark urine more often, particularly in the days after treatment. That means my kidneys are working extra hard to get these chemicals out of my system. I also deal with this cycle of constipation and diarrhea with a few days of normalcy after each treatment. The wound also has a distinct smell these days - which may be caused by the cancerous tissue and/or dying tissue.
And, then to top it off, I don't know if the treatment is working. It worked for two months on Abraxane and then it stopped working. I just started Herceptin about ten days ago. But Herceptin takes longer to work, my doctor says. So, I'm suffering from these side effects from chemo with no guarantee that it's working. Kinda makes a person want to refuse treatment.
I need to bear with the treatment a little longer, though, and see what happens. I think I am seeing some small signs in the wound that something's happening. The red lesion (a mini Mount Herminator) has white tissue at its tip and today, when I took the dressing off, it started bleeding - more than a drop or two. I see the wound care nurse tomorrow and the surgeon on Wednesday and will report that to them and see what they think. Also a couple of the satellite lesions toward my back seem to be getting softer and the skin around it is darker, which may mean that it's dying tissue. Soooo, I may be seeing some positive results of treatment, but I don't know for sure.
In the end, I'm diagnosing myself with treatment fatigue. I'm tired of being tired. I'm tired of the constipation/diarrhea/normal cycle. I'm tired of the neuropathy and the face breaking out.
Because of the fatigue, I have half a mind to refuse Abraxane for the next cycle. I'll go ahead with the HA (Herceptin and Abraxane) this week, but I may see if I can skip it for month 5. It obviously stopped working on its own. Herceptin alone may be doing the trick. And, if they opt for surgery, I may go off Abraxane anyway.
So, yes, I do get fussy and out of sorts. Today was one of those days. I'm fatigued and I'm tired of all the treatment side effects. But when I remember to live in the moment, I am still in a good mood. I also just have to remember all those people out there who are rooting for me, praying for me, sending me blessings and good positive energy, and I smile. So, thank you. It helps more than you know. : )
Saturday, January 8, 2011
I haven't really talked about what's going on in my wound lately. Things haven't gotten better, but it may take time for the Herceptin to work.
The satellite lesions are still there and while they don't seem to be growing bigger, width-wise, one at least, and maybe two or three of them, seem to be growing up and out. Like little Mt. Herminators.
One of the lesions was a red one that was kinda long and skinny (about 1.5 to 2cm long and 0.5 cm wide). This is the one that has definitely grown out and is now about 2.0-2.5 cm long and maybe a little bit wider, but it is taller and now has white growing at the end.
In October, the white represented "slough" or dead tissue that was debrided over a few weeks. I'm kinda hoping that this white stuff is slough, although it seems more like an intact bump (meaning the white doesn't come off when I touch it with the gauze).
There is also more slough within the wound. A couple of places were bleeding a little bit yesterday, representing a breakdown in the outer layer of skin. I don't know how to interpret that.
So, it's a wait and see game. Dr. K finally talked to Dr. D from UW and in February, if Herceptin doesn't seem to have done the trick, then I may start using the Imiquomod, an ointment that is effective against some kinds of skin cancers. And, maybe surgery. I see Dr. F the surgeon next week.
So, it's a bit disconcerting. But there are options. I will achieve stable disease sometime soon. I can just feel it.
My mood is good, though, for the most part. I feel like I am being productive at work. I head to Hawaii for a workshop next month (and also taking a few days to play) and have also just made plans to hang out with friends for a couple of days in Vegas in late February.
Friday, January 7, 2011
As I mentioned last weekend, my new chemo cycle is
Week 1 HAZ - Herceptin, Abraxane, Zometa
Week 2 A - Abraxane
Week 3 HA - Herceptin, Abraxane
Week 4 Whew! - no treatment!
So, today was an "A" Day. It was fine. The appointment went long since we had to wait almost an hour for the labs. When I was finished, it was time for lunch, so my folks and I went to Appleby's.
Then I went to my office and met with one of my grad students. A very good meeting.
Then I had to talk to my office manager/accounting guru about a variety of budget-related topics.
Then back to my office to try to find a file that I haven't been able to find for several days. I also had to talk to my friend and colleague in Hawaii about some of the budget stuff and I searched for the file while I talked to her.
And, then!!! I found a file I had been missing for months!!! And, then, about 10-15 minutes later, I found the newer-lost file!! Both were in a drawer I had searched multiple times. I told her that talking to her helped me find the files and then she mentioned that they found their way back to this dimension from another one. I told her that I needed her help to open a portal between the dimensions! Hee hee! For me, I think the steroids I had in my pre-meds had kicked in.
I picked up Eddie about 30 minutes after that and I was fairly silly.
Yep, steroids. That's my story and I'm stick in' to it!
Wednesday, January 5, 2011
I don't usually go through the trouble of New Year's Resolutions. At least, I don't publicize them. However, in my head, I usually make some decisions about ways to change my life.
As I mentioned in an earlier post, I am recommitting to dietary changes: I'm cutting out sugar, white flour, and processed foods. I am also trying to only have one diet pepsi each day. I have been doing okay in this regard - cutting down on what I consume although I will admit that I haven't entirely cut out sugar yet.
I also decided to start running/jogging again. I started that today. My goal is to run 3 times a week, about 20-30 minutes. I walked half the way today. I could feel it in my thighs and in my right calf.
Plus, my goal is to spend as much time as possible in my Humanities Center office. I have already finished a couple of shorter writing projects and today, I figured out my plan of attack for my book manuscript. I have a contract with OSU Press to compile a set of essays that I've already published on King Island. My goal is to have the finished manuscript by April 1. I also have a few chapters completed.
I must say that I really like this (new to me) office that I get to use. We're in an older brick building; my office is the size of a bedroom. I have an L-shaped desk, another filing cabinet, a book shelf, a side table, office chair, and easy chair, plus a couple of lamps. My windows face southeast, so when we had sunny weather a couple of days ago, I had nice sunlight trickling in my window from outside. I like it because the office is fairly empty - I don't have all the stuff I've accummulated in my regular office. Somehow, the lack of clutter and files is like free my mental space to make room for these writing projects. I chatted about this with the Director and he mentioned that when he used his office, he only brought in the books he needed for writing and that it felt "liberating".
Exactly. I understood what he meant. It's like I can forget all the other stuff that I usually need to attend to. Liberating is very cool.
In other words, I've had a good few days already. Now, if the satellite tumors would behave and respond to the Herceptin/Abraxane combo, things will be peachy keen!
Monday, January 3, 2011
A few weeks ago, I started reading "The Girl With the Dragon Tattoo". It was interesting if slow start as the author gradually told the story. I only read a few pages at a time. That is, until yesterday, when my son was jumping at Wacky Bounce, the story started to move faster, so I read pretty much straight through from about 2pm to 11pm.
I haven't read like that in a long time. I miss it. Too many other things to do usually.
After a relatively quiet few days over New Year's (stayed home and enjoyed the evening with Eddie on Friday/Friday evening, buffet at Spirit Mountain on Saturday, work around the house on Sunday), I started my new work schedule today.
I am officially a "fellow" at the Center for the Humanities. This means that I won't be teaching any courses this term, and in theory, won't be serving on any committees (but there are two that I can't avoid). My purpose is to write.
I had some paperwork to do in my regular Anthro office this morning and then I went to my Humanities office. I like the location - a nice southeastern light comes through the window in the morning. I spent the morning trying to configure Entourage, to no avail. I'll just access my email via the Outlook link. I managed to do some editing to a revise and resubmit article. I still have more to do. I had lunch with a friend at Evergreen, a local Indian food buffet (yummy nan and chicken takhini). Then I picked up Eddie.
After this revise/resubmit, I hope to finish up a quick application, then it's working on my book manuscript.
No big news. Just monitoring the satellite lesions in the wound. And, work. I could use with some more sleep - hopefully tonight.
Say what? : )
This is actually my treatment schedule. For the next few months (assuming that the Abraxane/Herceptin combo do the trick), I will have a monthly cycle that goes something like this:
Week 1 - HAZ - Herceptin, Abraxane, Zometa
Week 2 - A - Abraxane
Week 3 - HA - Herceptin and Abraxane
Week 4 - Whew - no chemo or targeted therapy
So, I will be posting things like: "Today is a HAZ Day" or "Today is an A Day". Just so you're warned!
You know, you gotta have fun with this s#*t!