Looks Like WBR After All

Yesterday was my birthday - I'm now 47 and expect to have many more birthdays!

I am doing okay. I think the time at the coast helped me regain some of my mental and physical strength. I might have slept a lot, but I also took long walks on the beach, too.

I saw the radiation oncologist - the one who does gamma knife in Portland - and he suggested that I do whole brain radiation at this time. It is because of the size (about 3.3 to 3.5 cm by 2.2 cm), the irregular area of it (it is not perfectly round), and because there is a cystic component. The good news is that it is not next to the area that causes nausea or vomiting. He also didn't think I needd to start right away. But I decided to go ahead and start next week.

My digestive system is healing. I don't get the cramps like I used to in my stomach. I still just have diarrhea and the only time I really have any nausea is with Tykerb. So, I am off of Tykerb for a few weeks.

I am only going to do 10 treatments of WBR. I have already had 2. They want to do 13. I'm doing to stop it at 10. I also want to start with a lower dose next week - 200 rads (or whatever the measurement is). The usual at this point is 250. But as I've said before, I think the standard doses are for women (or men) who are bigger than I am. I want to see how well I tolerate the treatment.

In the meantime, through the weekend, I will stay on antibiotics. This is because a new wound opened up under my arm - where an area grew. It also bled a lot when I took the dressing off yesterday. So, I took all three Keflex (only took 1 a day for the last week and a half) yesterday and a Flagyl. I want to try to take all three through this weekend to see if that clears up that infection. I saw the wound care nurse yesterday instead of today. I won't take the antibiotic when I start WBR next week. The area where we're trying to grow skin is 2.5 x 0.5 cm, down from 3.5 x 1.0 cm last week. So, that's healing. The chest wound is also healing.

I guess I'm okay with the decision. It will all (or most of it) will happen while Eddie is bak East with his dad.

All in all I broke even at the casino. Pretty good for several days of playing. My sister, though, won about $300. She stopped when she won. Smart girl.

My parents got me a card and flowers. My son also got me a card and a gift certificate to a local coffee place. We treated ourselves to yummy summer drinks there yesterday, after his appointment. I also got a card from my oldest friend, P., who I need to write an email to. I got a card from my supervisor, too. That was cool. Plus over 100 well wishes from Facebook friends. My cousin and her husband are visiting last night and today. They head on up to our cousin up north later this afternoon.

My biggest problem is that I can't seem to relax my shoulder and arms enough. I'll relax them to go to sleep - and will sleep for a few hours (last night about 5 or so), but then I can't get comfortable again. It seems that laying down is the only way to relax them, so I tend to nap a lot.

I will meet with my grad student later today and see about getting her started on a couple of projects. A friend of mine also moved into my office - it will be interesting to see how she moved things around!

Have a good Friday!

My Doctor and I Understand Each Other

It was a good day today. It was a bit of a lazy morning, then I sorted through Eddie's and my clothes to get rid of stuff we won't wear anymore to take to Goodwill. I also sorted through linens and blankets, too. I wanted to put labels on stuff in the garage to sort them into a dump pile, a garage sale pile, and a Goodwill pile, but ran out of time.

I then went to my office to pick up some articles and stuff so I can work on my blogger analysis article - some research on narrative medicine and such. Then I talked to my supervisor and was reassured that my decision to go on disability (at this point, temporary for the next year) was fine with her. Then I told her my ideas for things that I had to drop last month - things that I could pass on to others or what I wanted to continue for myself.

Then I talked to our school's accountant/assistant (formerly our office manager) about my grants and she informed me that she and another colleague intended to come to my house today to clean our our gutters, but my colleague had a last minute visitor and couldn't make it. Then it turns out that my colleague's 20-year-old son overhead the whole conversation about the gutters and informed them that he would come over in the next week to do them because (and I quote), "I don't want to see two old ladies up on the roof doing it". Wow! Totally unexpected. Thanks, S.!

Also, my supervisor and the accountant say that there are plans afoot to either do more yard work or to paint the house for us. Wow again! I feel so very fortunate to have such great colleagues. I should also say that a colleague's husband came over today to help my dad in the yard - he trimmed the shrubs in front of the house and hauled dirt for dad. The yard is really starting to take shape. Thank you, A.!

Then, it was off to see my therapist. I was apprehensive because I wanted to talk to Dr. K about my making decisions without consulting him, plus concerns about the areas in my armpit that aren't healing (the smaller areas suspected of either infection or cancer). We had a good discussion and it helped me to clarify exactly what I wanted to say to Dr. K.

Then it was time to see Dr. K. When I got in to see him, I said that I know that I made a couple of decisions to do the last two surgeries without consulting him. Part of the reason for not doing so was that he was out of town and also that I was afraid he'd talk me out of it. I also said that I hoped that making decisions like that wouldn't harm our relationship. I teared up a little from anxiety, but then he reassured me, "Don't worry about that [making decisions without me]. Those decisions are very much in keeping with the way that you make decisions." In other words, I didn't surprise him.

I proceeded to tell him that his comment about Christmas made me sad at first, but then it pissed me off and his reply was, "Good!" I also said that I thought he was trying to manipulate me to continue treatments sooner than I wanted and he just smiled. I just smiled back. He also said that sometimes, physicians have to be realistic with their patients - and in my case, I do need to make some preparations in case I die sooner than I think I will, particularly get my will prepared, etc., which I have been avoiding because I don't want to think about it. But best to be prepared.

So, then I showed him some of the research I found (namely, the piece about survival rates and brain mets) and then made my case for getting the skin mets under control. I told him about some of the things I found on the her-2 bulletin board at breastcancer.org (I think) regarding skin mets. I told him about some other options, like topical treatments, testing my tumor's biomarkers/DNA?, and TDM-1.

Of all the options, he seemed to like the TDM-1 and said that we needed to get me into that clinical trial. So, I told him that Genentech has an application process by which he applies to be a PI for me on an individual use basis and he said he'd be happy to do that.

I was pleased with the visit. It seems that Dr. K and I understand each other. He supports my decisions, promised to look into some of the options I presented, and also to try to get TDM-1 for me. I'll see him again after whole brain radiation - and our mini-vacation to the coast.

I have been tired all evening though. It was an emotionally draining afternoon, but it was a good one. I feel that things are moving forward as they should be.

Surgery tomorrow. A good thing, too, because the chest tumor started bleeding a lot last night. Luckily, the nurse gave me a powder that clots the blood; even so, there is still some underlying leakage. I didn't change the dressing tonight (I changed it this morning) because I was afraid it wouldn't stop. I'll let my surgeon deal with it tomorrow.

Time for me to turn in. I'll write you all on the other side of surgery! Wish me luck for no complications like infections and too much bleeding. I appreciate all of your healing thoughts, energy, and prayers!

A Good Day and an Interesting Observation

Yesterday afternoon, I began work on edits on my chapter on the Inupiaq and Yup'ik view of Alaska statehood. An editor, who really doesn't know anything about Alaska or Alaska Natives, had over 30 comments she wanted me to address. When I got into them, I didn't realize how detailed some were going to be, so I needed to look up additional information. While it took longer, I think it made the piece clearer, especially for non-Alaska experts. But some comments were ridiculous and I would have to say " No, I am not going to add Nything on this because it will detract from the main point". The rest of the comments were just tedious edits. So a job I thought would take 2-3 hours took about 7 hours instead.

Gak! No wonder I hate editing. But it was needed and the chapter is better for it. I finished it after lunch.I am so glad that I was able tom finish it!

Then I went to my friend's graduation party and hung out with them for 4 hours. It was visiting with them all. I even had my first beer in almost three months. Wasn't sure if I could but it was enjoyable. Oh, yeah. It was an Alaskan Amber, one of my favorites like Fat Tire Amber. We sat in lounge chairs on their porch, had a barbecue burger and lots of veggies. Then watched a few people play horseshoes while I sat in the sun. It was a relaxing time. No pressure to be "on". Just chat when I felt like it and observe my friends and their family (lots of kiddos, like 10 or more) when I didn't have much to say. Regaled them some with news of my surgeries and talked about next steps. Several are nurses or work in hospitals so Imlet them see my surgery scars on my scalp.

As for the interesting observation: I noticed the other day that the I was able to move the chest tumor a little side to side. I hadn't been able to do that before as it seemed solidly attached. Today, it was even looser. In other words, I think it is becoming less attached to structures underneath.

I think that it is a good thing.

I am going to try to see my local surgeon and see if we can't get the damn thing taken off. I want to be free of any visible tumors, so I can get to the business of keeping any more from cropping up. It is crazy to be considering another surgery perhaps even in the next couple of weeks, but for some reason, the thought of being tumor free is rather appealing. I just don't think any kind of chemo will shrink it. I should also say it isn't growing, either. It is a pain, though.

What a Day, What a Day, What a Day

And, I made it! I'm tired, but I made it.

I went to wound care first at 8:30am. The area with no skin is smaller by about 1/2 cm - it's now 4cm x 2.5cm, down from 4x3cm on Tuesday. That's good.

She also changed the dressing on the chest tumor. More of the skin has broken down. After I talked to the nurses at the Infusion Center and the wound care nurse, I think I'm gonna try to talk my local surgeon into removing the damn thing sooner rather than later.

Then, I ran over to the Social Security office in Albany to drop off paperwork. There was no line, so I was in and out of there faster than I thought I might be.

Then, off to Ambulatory Infusion to get Herceptin and Zometa. I will have an echogram next week to check my heart as it has been since Feb 2010 since I had one. (Sheesh, I thought I had one more recently than that.) My heart rate is about 90-100 beats a minute, which I think is related to the steroids. The heart rate was also elevated when I was anemic in April. So, they just want to check and make sure everything is okay. I haven't heard yet about the Tykerb. I will call on Monday to see what the status of getting that drug is.

While I was there, I worked on edits to a chapter I wrote last summer for about an hour.

After three hours there, I picked up Eddie - he had an appointment. Then, I actually came home and worked on edits again for another hour.

Then, one of my colleagues dropped off Chinese food for our dinner tonight, which we then promptly took to Eddie's school so he could go to the carnival. I was really hungry when I first got there and was cranky, but once I got food in my belly, I visited with several people, including one teacher whose husband recently died because of cancer. So many of the other parents and teachers told me that they were praying for me and offered support. Thank you!

Right before I left, Eddie went into the dunk tank and got dunked a couple of times. He was having a ball.

I got home about 7:45. A long day. But I made it through. I'm tired, of curse, and happy to be horizontal. My lymphedema arm is a little achey, but less so than the tendonitis in my right forearm.

Life is good. I'm glad I was able to hang with Eddie at his carnival. I feel very happy to have life as normal as I can make it for him.

Happy weekend!

An Outing

I woke up feeling out of sorts this morning. I didn't know what I wanted to do and then it occurred to me that I was tired of being home. I wanted to get out of the house and have a change of scenery.

So, I suggested and we decided to go to Spirit Mountain Casino and do the lunch buffet. Dad took Eddie to the children's arcade and I gambled. I lost $12. Eddie won 2200 tickets and came home with a giant slinky and giant sunglasses, among other things.

All in all, we were gone about 4 hours. It was nice to see the countryside. But I'm tired now. I don't feel much like doing anything so I'm back to watching TV.

One of our grad students stopped by with her partner - they brought us two quiches, a veggie one and a bacon one. We had the veggie one for dinner - it was good! Thanks, Courtney and Dale!

I was invited to go to my teammates' birthday celebration after their softball game today, but I'm too tired.

Yesterday, I was somewhat productive. I found a house at the coast, finally, for a handful of nights in July. I also worked on my mosaic design and rested. I think I got about three hours sleep last night.

Tomorrow? I need to get a digital file from my Humanities office so that I can finish my edits to a chapter I wrote last year. I want to get those edits done tomorrow, so I can get started on my cancer blogger analysis and write-up. I also need to pay a bill. But I might also get some more mosaic supplies and work on the mosaic.

I only have to have three steroid pills today. Tomorrow, I will take two and only one on Tuesday. Can't wait to get off that damn stuff. I really wanted to get a solid few hours sleep.

Thanks for driving today dad. It was really nice to get out of the house!

A Wrinkle in my Disability Plans

I had hoped to take long-term disability all next year. It turns out, though, in order to have my benefits covered, I either need to work at least half-time or pay COBRA. This is because I do not have enough FMLA left to protect my benefits. (I've been on FMLA for over a year. Long story; don't want to talk about the nitty gritty details.)

I can't afford COBRA, I don't think, with the decreased salary I would get on disability. I'd like to keep my current insurance. I could go on the Oregon Health Plan, I supposed, but I don't know how well it would work.

I really wanted to have a stress-free year where I didn't have to worry about work.

CRAP.

I really wanted time off. But I may end up teaching a course a term or something. I'll have to talk to my supervisor. Not 'til next week sometime, after I'm home from this next surgery.

Sheesh. I'll be up tonight worrying about this one, I think.

UPDATE: I found out that to pay for my own insurance out of pocket,it would cost me about $1250 for both medical and dental. Holy cow. I have half a mind just to put it on my credit card for a few months so I can rest up and not worry about work during the fall. We will see.

Sleepless Nights are Conducive to Thinking and Making Decisions

I have been feeling generally sleep-deprived the last couple of days. Damn steroids. But the news that I can go off of them sooner rather than later - in less than two weeks - was very welcome news. The neurosurgeon allowed me to cut my dose from 4mg 4x/day (which he said was too much) to 4mg 3x/day. My fingers are still numb but I am steadier on my feet, so I made the decision to only take two doses a day until surgery.

Oh. I forgot to mention that surgery is Wednesday morning.

If my hand gets weaker and/or I feel unsteadier on my feet, I'll go back up to 3 doses. But I don't think I need it. I mean. It's only four more days until the sucker is taken out and I don't have to worry about swelling.

I slso decided to put off whole brain radiation for a couple of months - maybe to the end of summer. That is now a prophylactic treatment - to prevent regrowth. But I plan to ask Dr. K to put me on Tykerb again which is a drug like Herceptin but is a small enough molecule to cross the blood-brain barrier. If I can start taking that within a couple of weeks of surgery, I will have some preventive measures to keep any more brain tumors from growing. Tykerb is easier on my constitution.

I made this decision because I want to get stronger this summer. I feel like it was a long long winter and spring - I was tired a lot with that damn tumor under my armpit. It's gone and with no lymph nodes or lymph system, I presume that there will be no further cancer growth there. Chemotherapy last fall through January made me tired and by the time I had surgery, I really had no reserves to fight the infection. I am still recovering from the April 1 surgery and now I am 8-days post brain surgery and am contemplating another surgery in 4 days. I am bouncing back from these last two surgeries faster (which seems strange that you'd bounce back quicker from a brain surgery but there you have it).

I just want to spend the summer having fun, resting, and gaining strength. If I go on Tykerb, it can perhaps help with the tumor on the chest and it will protect my brain. If I can avoid the heavier-duty chemo (although Dr. K won't like that idea), I will get stronger faster. Radiation creates fatigue, but if I can delay that for a few months, I will get stronger faster. Tykerb would give me the same result, I think, that radiation would in terms of protecting my brain. If they press, I will consider radiation in late summer/early fall. That is soon enough, I think.

Doing this, going on Tykerb in addition to the Herceptin and Zometa I already get, will help me gain strength. That tumor on my chest didn't grow while I was Tykerb. I want to get back to "normal". I want to travel locally this summer, visit people, have fun. I am in a much better position to do that if I can delay radiation and heavy-duty chemo. Like I said earlier, I'm not convinced that heavier duty chemo is the way to go. I will, however, consider both if there any indications that the cancer keeps progressing this summer. But I don't think it will if I go on Tykerb.

I also decided the night before last that I will probably go on long-term disability this next school year. As I tried to go to sleep, I had morbid thoughts about not being around and concluded that life was too short to stress about work. I really want to spend the next year figuring out a treatment regimen (both western and alternative forms) that will get me into stable disease status. I felt like this last year and a half, I have been doing a half-ass job at work and a half-ass job at healing. Knowing I couldn't put my full energy into either made me feel conflicted all the time, worried about inconveniencing my colleagues, worried I wasn't doing enough for my health, and not having any energy. It's time to devote myself to healing and to let my colleagues get someone in there who can take over my duties so they don't have to wonder and I don't have to worry. At this point, I figure it will be the whole year. This will allow me to really consider a wide variety of options and being proactive instead of reactive with my treatment. I want to develop a range of spiritual and medical practices that will allow me to reach stable disease status. I can only do that if I don't have to worry about work.

When I reached that decision, I smiled and felt some measure of peace, even if I couldn't sleep.

So, that's the plan, man. I'm gonna try to start Tykerb within a couple of weeks of surgery. I will delay radiation until later this summer after I gain strength. I will continue with Herceptin and Zometa and will continue with my turmeric/mushroom paste on the skin tumor. I will gain strength and contemplate the things I can do to reach stable disease. : ) Sounds like a good summer, eh?

P.S. Why I Can Play This Summer

Another thing I am thankful for - my state benefits for work that will allow me to play this summer.

I will get short term disability checks that, I think, won't be much of a decrease in my pay. I worked enough in May and the whole year that my benefits are paid through the summer.

In other words, I will be okay financially with a little extra cash to play.

So, as I said, life is good. It would be worse if I had to worry about money. But I don't. And, for that, I am thankful!

Should I Be More Worried? OR the Power of Positive Energy

When I got the news last Wed night that the MRI showed two brain tumors, I wasn't too upset. My family was much more upset and I cried because they were crying but not because I was devastated at the news. I know it's serious, but I am still not really devastated or even worried. I am more worried that I need to be worried about this setback than about the setback itself.

So, as the steroids keep me awake at night, I have been trying to figure out what I think about the whole situation.

I keep thinking that it could be much worse. Surgery was successful. I am on steroids that interrupt sleep and mess up my stomach but the weakness and numbness in my hand and arm are dissipating. I hardly have any pain. The acid reflux pills help. I rest as much as I can. I have a plan for treatment in the next weeks that should take care of that pesky brain tumor. We will work on a maintenance plan to keep it from coming back afterwards.

I have a plan for the tumor in my chest. My wound under my armpit is still healing - the skin is still growing over the lat flap. There was a 6x8cm open spot and I think it was a 2x1 and another 2x1cm spot.

I start PT next week for the lymphedema in my upper left arm.

I decided the brain tumors were a wake-up call - I had been really fixated on the damn wound and satellite lesions (about 18x12cm right before surgery) in my armpit prior to the April 1 surgery and I hoped that after that surgery, I could enter into stable disease status. But the brain tumors might be telling me that I can't be too complacent about how I approach my treatment and my healing.

I am not convinced, however, that heavier duty chemotherapy will be the ticket. I read other bloggers who have gone that route - they've lost some quality of life and yet their disease still progresses.

To me, that means that I need to figure out ways to approach my treatment that are more humane to my body. I've been doing a lot of reading on EAstern philosophies and healing traditions and want to bring more of them into what I do. I have friends who pass me on information on that and I see my acupuncturist. I think I will dedicate my summer to exploring these kinds of both spiritual and physical actions more as I think I will live longer that way.

The brain tumors have also really given me permission to just forget about work. The stressful part of work. The only kind of "work" I want to do is the fun stuff - learning about people and why they do what they do, which is why I got into anthropology in the first place. My whole plan this summer is to putz around at home, work on mosaics, maybe plan yard projects, go to the Coast, stay in a treehouse. Fun stuff. Life is too short is get caught up in the drama and politics of work.

So, in the end, I guess that's why I am not more worried about the brain tumors. Things could be worse. I could either spend my time depressed and worried and sad or I could just see this as an opportunity to make sure I make the most out of my life, enjoy myself, enjoy my friends and family, spread joy, be creative, be thankful, and count my blessings. Laugh. That is a choice one can make. I choose to focus on the positive. And, life is still good!

I also think that the continued good energy, positive vibes, prayers, blessings, and whatever else is coming my way also help me a lot. And, for that I am always thankful!

"'Cuz Two out of Three Ain't Bad"

The last few days, I've had a headache (from Friday evening to today, that extends from the back of my neck to my temples and on the top of my head). I've also had a leg cramp in my right calf early Friday morning. And, I've also had several hot flashes in the last few days.

When I looked up symptoms for Dilaudid withdrawal, I learned that leg cramps and hot flashes are common.

Two out of three ain't bad.

Not sure where the headache is coming from, but my guess it's part of the Dilaudid withdrawal. I'm trying to wean myself from them. I've gone from one every 4-6 hours early last week, to one Dilaudid every 6-8 hours on Tues/Wed, to one every 8-12 hours Thurs/Fri/Sat. I didn't mean to do 12, but that's what happens when it comes to sleep and the timing of when I take the Dilaudid.

The left arm/surgical side doesn't hurt much. Now the lymphedema hurts more - like a bruise. It's the right arm that bothers me, but it helps when I try to relax it. So, I think that I can get by with just the Tylenol and Ibuprofen. (I only take Ibuprofen once a day.) So, I will try to go to one every 10-12 hours and then stretch that so that it's one every 12-14 hours for a few days and then make it 1/2 every 12-14 hours and then do away, eventually, with the half a pill. We'll see.

Tomorrow, I head to Portland to see the plastic surgeon. Then I see the local surgeon in town.

I guess that means today, I need to grade papers, pay bills, and help Eddie. Yesterday was my day to be lazy. Today is my day to do some work. I feel like it, so I guess that's good!

I plan to keep weaning myself from the Dilaudid. I'll let you know how it goes.

Transfusion Helped

As I mentioned in my last post, I had a transfusion on Friday. This past weekend and the last two days, I have noticed that it has definitely helped.

On Saturday, I was lazy through the morning, but after lunch, I went to urgent care for a dressing change and then my folks and I went shopping in Albany. I was specifically looking for button-up shirts since I can't lift my arm above my head and put on t-shirts. I still can't wear my zip-up hoodies either as the sleeves are too tight. We got home about dinner time and I managed to keep going through dinner. Then I rested.

On Sunday, after being lazy in the morning, I then ran errands to my office, then picked up Eddie at his dad's, then I went to Urgent Care, then Eddie and I went to the park before dinner, then I had dinner. Then I rested.

On Monday, I was busy from 8 in the morning until about 6:30pm (I worked for awhile, then wound care, then lunch, then met with my colleague K., then picked up Eddie, then did a presentation with K., then stayed around for the reception). I collapsed by then - I was really tired during the reception. The presentation did generate some interest with a few people, so I guess it was successful.

Today, I went to the office for a bit, then wound care, then my class for two hours, then lunch, answered some emails, then had a meeting, picked up Eddie, and from the afternoon until now, I've been sitting in the living room. This is partly because since I came home from the presentation yesterday, my whole left arm has been swollen with lymphedema. I've spent yesterday evening, through today and now this evening, I've been trying to keep my hand and forearm elevated so that the swelling can go down. My left bicep has been swollen since surgery. I figure that once the wound clears, then I'll worry about decreasing that swelling, but I might have to start wearing a sleeve or something before that.

So, even though I am tired now, I am glad that I can have more or less normal activities during the day. I'm happy about that. I am also able to walk up stairs or walk several blocks without losing my breath. Thank goodness for the transfusion.

It's now sunny out. It's supposed to be really sunny and warm tomorrow, with a temp of 70 predicted. Yay! Spring is finally here!

Visits with Doctors

On Monday, I saw the plastic surgeon. I asked her why I still had an open wound and the answer was that the bacterial infection (bacterial colony, really) wiped out a lot of the skin graft.

The latisimus flap (the muscle near your shoulder blade) did fill in the big hole created when they took out the cancerous mass. The skin graft was to cover the whole area, but the infection wiped it out.

Dr. T was pleased with the progress of the wound after the infection. Now the whole area is nice red granulated tissue. That tissue will eventually form skin - maybe in about two weeks - but it's going to stall out because the skin can't grow up the "wall" that formed near the back of the wound. Remember when I said that it looked like a ledge? The healthy flesh coming from my back toward my armpit all of a sudden dropped down a 1/2 inch. Well, in order for skin to grow up to that, we need to create a ramp or a slope going down to the granulated tissue, so she used silver nitrite (which is used to cauterize bleeding wounds) to kill some of the tissue at the edge, so it can create a slope that will allow the granulated tissue to grow skin up to that level. There was also an area in the middle of the wound of "hyper-granulation" that needs to be killed so skin can form there. So, we're still in the process of growing tissue. At least I now have an estimate to when I no longer have an open wound. I can handle a couple of weeks. I had a vague idea that it might be months. I'm relieved about that.

Then, yesterday, I saw Dr. K, my oncologist. The assistant noted that it looked like I lost weight. I think I have since surgery as my clothes are looser. I ended up weighing 135 pounds, about 8 pounds less than I did prior to surgery. That was a surprise because when I was in the hospital, I weighed 142. Anyway, I figure I have lost the implant (good for a pound or two), the big mass under my armpit (good for another pound or two), plus I drained a lot of fluid (the whole armpit had edema prior to surgery). I told the nurse that my appetite has been great so I don't think they are too concerned.

I talked to Dr. K about the tumor near my breastbone - I have watched it grow a little bit in the last few weeks since surgery. It seems to want to grow up and out of my skin and now has a little purplish bruise on the skin above it. Also, about an inch up my arm from the port, it seems that part of the catheter comes up to the skin before going down again. I wondered if the port needed to be taken out. He thought that the catheter was okay and also decided that I should start Herceptin again to try to stem the growth of the breastbone tumor. I haven't had chemo for about 7 weeks, so I guess it's time. Eventually, that tumor may be taken out surgically. But I don't feel like thinking about that any time soon. I wonder if I should stat making a poultice of turmeric and aloe vera gel and putting it on that tumor to see if a topical application would help stem the growth? It certainly wouldn't hurt, I guess.

In the meantime, I made it through class yesterday. I asked the students where things stood with their projects and I helped talk them through their literature review. I was pretty tired afterwards - listening for two hours and trying to concentrate on what they were doing. Then I came home, ate lunch, went to wound care, then picked up Eddie, ran an errand, and then saw Dr. K. Whew. I laid down after dinner and I dozed a couple of times through the evening. I didn't get to sleep until late, though. I ran over to the MU for a snack before class and my legs felt shaky afterwards.

I made it through two busy days and didn't feel too tired. Yay! I do try to take it easy when I can. Today, I only have wound care. I might also run an errand or two. Otherwise, I need to grade papers and do some paperwork. My plan is to take Ed to school, come home and rest until I go to wound care, then go back to my office to take care of papers.

YAY! Real clothes!

The last two days, I've actually worn real clothes.

That's right, I'm wearing jeans and button down shirts! I felt so much more normal. No tubes sticking out of me.

Also, there's no odor in the wound. My body is winning the battle against the bacteria in the wound. My wound care nurse, L., said yesterday that she was impressed with how well my body and immune system was working to fight the bacteria. I said, "But other people are like that, too, right?" and she said, "No, actually, you are in the top 10% in terms of how well your immune system is working. Most people wouldn't be doing so well." She also said that it's due to how well I take care of myself. I added that I think acupuncture has helped my immune system.

As I mentioned before, I think turmeric is really helping the wound. L. also started using collagen on the wound to help my body build tissue.

I was able to go to two appointments yesterday and a friend came to visit. I rested between appointments and before my friend came. That helped.

Today, I'm going to my overload class - it's a 1-credit honors student colloquium that I'm co-teaching with my colleague. He's taken the class the last two weeks and has a good handle on directing the students. I just have to show up today to give my two cents on the readings. They are readings that I have taught before, on traditional ecological knowledge. I don't expect it to take much energy from me. Instead, I expect to gain a bit of energy. My colleague says the students are interested in the subject and are bringing up some interesting insights. My colleague has also really enjoyed the readings I picked, so I'm pleased. It's only 50 min then I plan to come home and rest.

I will still miss my other 2-hour class, though. My other colleague has taken over there - she made some decisions for me since I couldn't even think that far ahead that will or have already helped. I don't think I can handle two hours yet.

I have two other appointments later this afternoon, but will have several hours to rest between times. Which is good because I think I only got about 7 hours sleep last night.

So, more baby steps into the land of the living. Thank you, colleagues! And, thank you to everyone out there for your continued support!

Overwhelmed and confused!

I am close to exhausting my sick leave. I also don't have many FMLA eligible hours (too tired to explain), which protect my benefits. I was also under the misconception that if I go on Short Term Disability, my benefits would be paid for. So, I got hold of people in HR to figure out what to do. Actually, I wanted them to lay out my options for me so I could make a decision.

But someone, instead, sent me several websites to read over. It's hard for me, yet, to concentrate. So, I got overwhelmed. I don't know what to do.

I finally talked to the FMLA specialist who finally explained things that helped.

The bottom line is that as long as I work or have enough sick leave to cover half of my work hours in a month, my benefits will be paid in full. I have enough sick leave to cover my benefits for next month. I will be able to work over 50% of my hours in May to cover benefits in June, and will likely have enough in June to cover July. I also expect to do the same next fall, so my benefits will be paid through summer.

That was my biggest worry is whether or not I'd have to pay benefits out of pocket.

I also don't think I will have to take unpaid sick leave this month. Next month is another story. But I may gain enough FMLA hours in May to protect my benefits. I just have to worry about decreased salary, potentially. I don't know how that works.

But just in case, I will go on short-term disability. Even if I have enough sick leave, they will give me $25/week. That might help cover any unpaid sick leave in May. Disability can be back-dated, too. The other good news is that I haven't been spending as much money while I've been home, so now I have some reserve to cover May, in case I need it. And, if I don't, I have some cash to take a little vacation when school lets out in June!

Limits

I am finding what my limits are, in terms of pain and levels of activity. I was dismayed and discouraged yesterday afternoon and evening because I got so uncomfortable and tired and tense after a friend came to visit.

I am trying to wean myself off of Dilaudid - Thursday into Friday, I took only one 2-mg dilaudid every 8 or 9 hours. I was fine as long as I stayed home and either sat in my chair or my bed with strategically placed pillows.

But yesterday, I went to wound care and about an hour later, a friend came to visit. Around the time of her visit, it was time for Tylenol - and I ended up taking a dose of dilaudid a few minutes after she left. My friend and I sat at the kitchen table, but I couldn't get my arm comfortable. My back - where they took the lat flap - was achey. My breastbone (sternum) feels pressure. And, where the drain comes out, around my ribs, bothered me. My shoulders were tense. I was restless because all I could think of as we visited was how uncomfortable I was. I couldn't wait to get horizontal in my bed.

Granted, before that, I hadn't been in bed since about 7:30 that morning. I sat in a chair in the living room, cleaned up, then went to wound care, then sat in the chair some more. I think that may be progress.

So, I took dilaudid and laid down and napped off and on all evening.

I was worried last night because I realized that if I can't sit at the table for long - or stand - I won't be able to teach next week. I still find it hard to concentrate for long on any paperwork. I don't know how I'm going to grade papers. It's hard for me to concentrate on what I'm going to say.

I tire easily. An hour with the wound care nurse and about 45 minutes with my friend wiped me out. How can I handle an almost two-hour class? I was also running a low-grade fever (99.4 - 100) last night.

In retrospect, I probably should not have taught our department's 4-credit class. I can probably handle the Honors College class (one-credit) that I'm co-teaching with a colleague. I will probably cancel all other appointments next week except for wound care.

So, recovery is still slow. I guess, when I think about it, it is not unexpected. I was anemic before surgery. They gave me two units during surgery, but my hemoglobin was 7.5 when I came home. It's been hard to retain nutrients - I am on a stool softener because of the dilaudid, but not all my food is digested; then the new antibiotic gave me diarrhea. My appetite is fantastic - I eat a lot. I'm also eating more yogurt to help with digestion. But my body is trying to fight off infections, build new skin and tissue, and fight pain/discomfort.

The good news is that the wound is healing. L., the nurse, took off some dead tissue. The honey dressing really helped with the odor. There is less drainage - from about 90 ml in 24 hours to 60ml yesterday. L. could see good pink tissue under the dead tissue. She was happy with it.

My plan is to take Dilaudid more often (i.e., every 4 or 5 hours, maybe 6), lay down more, rest. I'll see how I feel on Monday. But I tend to think that I may have to talk to my boss about this class . . .

Near Tears - Need a Distraction

Near tears? Actually, when talking to my two grad students in the last couple of days, I've actually teared up, especially when they asked how I'm doing. One of them even told me today that I don't need to put a brave face on for her benefit!

But in truth, I put a brave face on because it makes me feel better. I'm tired of feeling sorry for myself.

I was feeling nauseous this morning - I took two of my nerve pain pills (which is allowable), but I found that it's too much for my system.

I am fatigued. I slept decently last night and so was able to operate fairly normally this morning. But by the time I got home, I felt tired. Work was a welcome distraction.

I still have a stuffy nose. And the pain pills wear off after a couple of hours or so.

My plan is to endure the next few days. I am trying to focus on the fact that by this time next week, I might be heading home. Surgery will be done with and I will no longer have a growth under my armpit.

My dad is also frustrated because he's not able to do much and when he does, he gets tired.

I think we both need to foci on what we can do, not on what we can't do, right dad?

Nitty Gritty Work

I am such a procrastinator, especially when it comes to the kind of work I need to do before surgery.

Today, I wrote my syllabus. It is hard to foresee how everything will come together. I think I finished most of it, but now it is the nitty gritty details. Did I remember all the readings? Did I put the due dates for the assignments? Are the .PDF readings uploaded into Blackboard? I also need to proofread what I have and edit it. Did I include all the assignments? Are the guest lectures on the schedule? Etc. Etc. Etc.

I also need to score candidates for a job search committee that I am on. I have 13 applications to screen and I need to make some determinations about whether or not candidates met the minimum criteria. And because of Affirmative Action, I need to be really clear about why a candidate did not meet a requirement.

I also need to address about 20 comments to a chapter I wrote. The comments are kinda detailed - some more than others - but it's boring work and I have been putting it off (in the name of spring break and/or more pressing tasks like the syllabus) for a couple of weeks.

Blah! Details details! Nitty gritty boring stuff.

This kinda work comes with the territory, though. People sometimes wonder that we are only in class 4-6 hours a week. The reason is that we are dealing with this kind of stuff. Plus imagine preparing for a 2- hour talk a couple of times a week. And committee meetings, writing up minutes and/ or figuring out what classes you will teach when. Then there is research, analysis of data, writing, finding money for new projects.

But enough complaining, huh? I get to decide what to do when. That's the beauty of the job!

Appointments and Errands and Work Emails

I had three appointments today and then lunch with a friend and colleague.

The wound care nurse said that, under the circumstances, the wound and the growth are doing okay. The growth actually shrunk to about 17 x 13cm. She also said that, in her experience (and she hasn't had many patients with cancer), growths/wounds like this have very compromised tissue and it tends to bleed easily. It was bleeding awhile ago, but the powder seemed to keep it from bleeding. Lately, I've been using turmeric and she thinks that it is keeping it from getting infected and from bleeding. In other words, the wound/growth could be worse.

I also saw my acupuncturist and she treated me for the fatigue and anemia and pain in my armpit/shoulder mostly, but since I am also working to remove my ego from many sources of frustration and stress, she put in a couple of needles at "constitutional" (basic DNA level, which is pretty deep) points. What was interesting is that after she left so I can just sit there, one point, my third knuckle on my left hand, just started throbbing. That's the San Gao 4 point, which has to do with my essential self. The funny thing is that there was no needle there. She thought the fact that point was reacting was a good sign that energy was moving to that area to help my body remember my basic DNA (I think), which cancer has hi-jacked. The idea, I think, is for my body to remember my essential constitution (i.e., pre-cancer) and recreate that. So, I had a reaction that she considered a positive step toward my healing.

Lunch with my colleague and friend, K., was fun. I think we're going to put in a pre-proposal with another colleague to continue some work in Alaska. There's some good positive energy there, which was really cool. My issue is that the pre-proposal is a quick turn-around. We have to submit a 4-pager by April 6 and my surgery is April 1. So, I need to work on as much as I can before my surgery. And, that's on top of edits to an article, my syllabus, figuring out Dropbox, etc. K. and I also had to do a little debriefing from our Hawaii workshop.

Then, it was off to my teeth cleaning. I hate getting my teeth cleaned. But Monday evening, one of my crowns started aching a little. But she didn't see anything of concern. It just might be bruised from chewing a lot of gum or something. And, amazingly, the teeth cleaning was fairly easy and gentle. Usually, I feel like she's poking my gums something awful.

Eddie and I also ran a couple of errands. He started rereading the Diary of a Wimpy Kid books, so we got the last two in the series. He's going through one of those books a day.

Now, I'm just trying to get caught up with work emails. Man, they keep piling up.

Tonight, I'm just gonna watch reruns on TV. And, work a little on my syllabus.

I am enjoying watching things bloom and bud. But it feels like an awfully cool spring to date.

Countdown: 8.5 days and 17 dressings changes to go.

I'm blaming chemo and getting older!! LOL

I am tired today. I guess I walked a lot. But I woke up three times last night (my norm lately is only 1 - a HUGE improvement).

I spent late afternoon and into the evening hanging out with a colleague and my grad research assistant. My colleague, T., was in town from Oxford (I visited him at a symposium in August 2009) and we had to talk about our project on ANCSA. I was supposed to meet him and another colleague at the Society for Human Ecology conference in Las Vegas in April, but the conference happens just three weeks post-surgery, so I can't make it. I'm going to send my research assistant to give my paper for me.

Anyway, we had dinner - and I had 2 microbrews - but I was home by about 7:30pm or so.

This afternoon, another friend called me to ask a favor. He asked how I was doing and I replied that I was tired because I was "out late last night"!!

He then asked, "How late?" and I said, "8:00pm". He just chuckled and said, "8pm is late for you!"

Why, yes. It is!!

Sheesh. I'm getting older!! But I think I can also blame chemo, eh? LOL

Presentation at Work Went Well

My colleague, K., and I presented a preliminary paper on Birds of King Island today for a class on campus. We'd gone to a cabin in the woods a week or so ago, which gave me time to begin doing background research on the topic.

It's been actually pleasant (maybe even fun) to go through and read old ethnographic notes and reports on Iñupiat culture and particularly bird symbolism, art, and folklore. Reminds me of one of the reasons why I love my work! It was fun putting together the slides and finding some good images.

I think that the presentation went fairly well today. I think most of the students enjoyed it, although I saw a couple napping off to the side.

My colleague, K., had already done a lot of work on the powerpoint, so my own work was fairly easy to pull together. Thanks, K.!!!

I'm tired, though. There's a big outlay of energy for that kind of work. I also didn't sleep long enough this morning. I also think the pain takes a lot out of me. I felt fine during the presentation as I had Tylenol 90 min before and the gabapentin (i.e., neurontin) about 30 min prior. But it's been hard this evening as the meds wore off.

A good day.

P.S. Dad got a temporary pacemaker today. He had a couple of episodes last night and then again after mom left this afternoon -the ones this afternoon were bad enough that they decided not to wait. Afterwards, dad even had an appetite. So, progress!