No more ibuprofen

The doc at the radiation center took my blood and a urine sample yesterday, but by the time I got there, the bloody urine has gone. We figure it is the Ibuprofen, which I took on Sunday. They alsomsaid I could take a second dilaudid pill so I age been alternating two with one to help with pain.

I cried a lot yesterday, especially at the radiation center. I can't wait for the WBR to be over. Two more sessions. Then I hope the nausea goes away and I just have to deal with the pain from the arm radiation. 15 more sessions of that.

No tears today so far. That's good.

My hair is falling out from the WBR. I expected it. Maybe in a month it will start growing out again.

Still constipated from the dilaudid. I take a stool softener and Chinese herbs for it.

Oh. I found out that I will start having to pay for my health insurance in October - $500 or so a month. And Eddie's social security benefits will also be deducted from my long term disability payments. I need to figure out monthly expenses here soon. We will be okay, but money will be tighter come October. I have extra now, so will save up. Nice to know what the finances will all look like finally so I can talk to Eddie's dad.

I'm Okay

Hi everyone,

My nausea is slowly going away. My acupuncturist gave me some Chinese herbs yesterday that I take right before I eat that really help with any feelings of nauseousness. But it's still there, so in the middle of the night, I took a few of the tiny tea pills (that's the way she dispenses them). I also had soe diarrhea yesterday but took an Imodium and another Chinese herb mix that should help with that.

I am drinking about three cups of ginger tea. It's modified a bit from a recipe found by a friend of mine and from a recipe given to me by my acupuncturist. Here is what I do:

1) Take ginger root and grate about 1 tsp. full.
2) Steep grated ginger root in hot water for about 10 min.
3) Strain the ginger out of the hot steep ginger water.
4) Steep one bag each of decaf green and peppermint tea and steep for another 10 min.
5) Add a couple squirts of lemon juice.

By the time you add the lemon juice, the water is more warm and I drink that.

I drink that before a meal or before I take the antibiotic.

So, the nausea is dissipating, slowly. That could be due to the reduced dose of antibiotic (I know I'm taking a risk, but I also assume the dosage prescribed is for a white male of about 180 pounds, not a half-Eskimo of 135 pounds. Medication also affects me fairly strongly - I'm sensitive to it. So, I assume it's okay. My chest tumor site and sutures and the skin graft site show no sign of infection. And the other areas under my armpit continue to heal.

I am taking my anti-seizure medication religiously (twice a day) and not taking Tykerb.

I also canceled my Herceptin treatment for today.

I know I'm taking a risk by not taking Tykerb or Herceptin right now, but I guess in the name of detoxifying from the surgical drugs, the antibiotic, the targeted therapies Tykerb and Herceptin, and the anti-seizure medication, my liver needs a break. So, I'm giving it as much a chance as possible to detoxify.

I plan to begin Tykerb again next week, after I'm off the antibiotic. I assume by then that most of the surgical drugs (anesthesia, etc.) are out of my system. Tykerb will make me feel like I am getting that protective effect on my brain.

I also did have one session of whole brain radiation (WBR), that should help with any potentially growing brain mets.

I will have Herceptin again next week.

I see my radiation oncologist next Wed and ask her some questions about how much WBR increases my chances of no brain tumor growth. Also, I want to ask her how long after surgery do they schedule such treatments. I wonder about doing WBR now because I think the swelling also contributed to my nausea; if there is swelling, I have to go on steroids again and I think that the steroids really affected my digestive system and it hasn't recovered. (Another drug I am still detoxifying from.) But I figure the more I can detoxify, the more able I can tolerate WBR and potentially steroids. So, at this point, I won't start WBR (if I do it) until after we get back from our little vacation to the Coast in two weeks.

So, I know I'm taking risks, but I figure if I do WBR and Herceptin and Tykerb, the treatments are more effective if I am strong and my immune system is strong. At the moment, neither is strong. On WEdnesday, I teared up at home because I just felt like every time I start feeling a little bit better, I get beat back down from side effects.

My side effects right now are three open wounds, a messed up digestive system, and a tight right shoulder and arm, lymphedema in the left arm, and some lack of sleep. This week, I tend to sleep in one or two hour chunks and wake up frequently. I slept off and on from 10pm-4am, for instance, then 6-7am. If I can resolve half of those (and I'm hopeful those wounds heal in the next couple of weeks), then I will feel better about tackling the next step.

The good news is that while my right fingers (the pointer and middle fingers) of my right hand are still somewhat numb - they are sensitive to heat - and while I have nausea, I have not had the headaches. I think a headache might be one of the main symptoms of a brain tumor.

So, I am okay. Recovering from everything. Taking it easy. But things are looking up. Finally.

My Brain Got Zapped Today

I just got my brain zapped. Yep, whole brain radiation started today.

I was apprehensive beforehand. But talking to people when I got there - asking about side effects - calmed me down. They had to do a "set-up" first to be sure I was positioned correctly and that took a little bit of time. At first, the tech didn't say what she was doing when, but when I asked her to tell me what she was doing and why, I was able to calm down. I thanked her for telling me.

Then, once the doc okayed the set-up, I got zapped. About 20-30 seconds on each side. Fairly quick. I don't even need to take off my contacts. Most people only get scalp redness (alleviated by aloe vera gel) and some fatigue.

Already got the fatigue but that seems better the more days I have since surgery. The social worker said, "gosh are you ready to start this today?". When I said that because my family had already scheduled time at a house at the beach - July 16 - and that this was the first day the neurosurgeon released me to start radiation - the 14 scheduled sessions have to begin today, she understood. She then said, "boy you're strong!"

Yeah, I guess I am. I get a lot of support at home and that really really helps.

I am more tired today than yesterday, though, as I couldn't relax my right arm and shoulder. I think it was because I spent a few hours gluing tiles to my most recent mosaic. It's better now, though. I do have some increased swelling in the front of the right shoulder due to the surgery and the nurse said that I could probably start taking Ibuprofen if I wanted. I guess I should check with my docs first, to make sure it isn't contraindicated with the anti-seizure medication. On second thought, I think it is. I do think I got some sleep, finally, and my arm relaxed partway through the night. I'm not going to use that arm much today so that I can get a better night's sleep. I will, however, try to stretch it more.

Tomorrow, I have four appointments - wound care, physical therapy, acupuncture and then radiation.

That's pretty much my life with wound care twice a week, physical therapy twice a week, acupuncture once a week, and regular therapy.

I feel so much better now that WBR (whole brain radiation - for ease of typing, that is the abbreviation I will use henceforth) has started and I know what to expect.

Had some diarrhea, too, today, but as that is a side effect of three of the prescription meds I am on (anti-seizure Keppra, anti-cancer Tykerb, and an antiobiotic Keflex), it is to be expected. I took an Imodium after breakfast and I feel better now. It seems that one 2mg Imodium tablet lasts me two days. So, tomorrow should be better.

Yes, I have a lot of things going on - treatment, side effects from treatment, treatments for the side effects, wounds, etc. - but it could be so much worse. I watched Extreme Makeover Home Edition last night - I don't have it nearly as bad.

And, yeah, I finally got hold of a real person at the Standard about my short-term disability claim this morning. While in radiation, they called and said that they are processing my claim and should have a determination this afternoon or tomorrow. Turns out  my old analyst was on vacation so I politely but  firmly requested another one as I have had much difficulty getting hold of her. It pays to call and follow up on things like this. Nice to know that I should know something by tomorrow morning.

I am on a different computer than my iPad - so I will post some pics that I've been promising for awhile! Definitely feeling better this afternoon than this morning. I promise I won't overdo it, though!

Visit with Dr. K and Random Thoughts

I had an appointment with Dr. K. He described my situation as "putting out fires". I can expect to be in real active treatment for six months. So, a couple of weeks after radiation, I will probably add a chemo to the mix to try to keep cancer from cropping up back in the brain.

And, while it's a serious thing that I developed brain tumors, I still don't feel too worried. I guess I still think that I will enter into a kind of stasis where there is no cancer progression but I can live a relatively normal life.

There is a chance that the brain tumors will come back. But we won't go there.

Maybe in July I can get this lump removed from my chest.

The weird thing about all of this is that I am more irritated and want something done about these damn wounds, the chest tumor, and the lymphedema. I would feel fairly normal if not for them. I guess that has something to do with how I look - I want to look normal even if everything isn't quite normal. I am more irritated about them than the brain tumors.

I have been watching lots of TV and see all these "normal" people and get a little envious since they aren't having to deal with what I deal with. But when I think about the people I know, I see them all dealing with something, so I've come to believe that "normality" is an illusion - or rather, that "normal" means that everyone has their cross to bear. I just don't happen to see it - we are so good at covering it up. I just can't cover up my "cross". And, that's okay.

I've gained a pound, I think, since Sunday. It's all the carbs I'm craving because of the acid reflux. Mom bought some acid reducer tabs for me today and they are already helping. Taking steroids in oral form can cause stomach ulcers/acid reflux. So, last night, my tummy was gurgly. I ate crackers and had a diet sierra mist through the night. But now it seems to be settling down.

Okay, I'm rambling. I'm gonna sign off because I'm tired. But I'm doing okay. Got some paperwork done today, recycled stuff I didn't need, took a tour in the yard to see the blooming flowers, so I feel like it was a productive day. I'm still shaky and weak but tonight, I feel like that's gonna improve. I am thinking hard about starting a mosaic. It's hard for me to read but I want to do something creative and productive. A mosaic just might be the ticket.

Did I Say My Mood Was Good? Hmmm . . .

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. : )

Strategies for Current Side Effects

I am not sure if I've mentioned this or not, but my scalp decided that it needed to go through puberty. In the last week, it really started to break out. So, I asked the nurses about it and it turns out that this is a common side effect from Abraxane treatments. The nurses and some websites I found stated to just clean and moisturize your scalp the same way you clean and moisturize your face. My current facial regimen is to wash it twice daily with a facial cleanser made of tea tree oil and awapuhi. I then use Aloe Vera gel, since it has antibacterial properties. Two days ago, I started washing my scalp, back to my neck, using the same regimen and this morning, I noted some improvement in the break outs. I also try hard not to touch my scalp very much - just like they say not to touch your face to help prevent break-outs.

I know that I mentioned the weird cramping that I have been getting in my stomach and I think I mentioned that my colleague said that Abraxane can destroy the inner lining of your stomach. The cramping started on Sunday evening and it was pretty constant through yesterday, starting after I ate anything. (Luckily, it hasn't affected my appetite.) Yesterday, when I needed to get some info from my acupuncturist, I asked her if there was some herb that I could take, so based upon my symptoms (including my head cold), she mixed some powdered herbs together. Yesterday, I put the herbs into veggie capsules and started taking it last night with dinner. I've only felt the cramping once today - otherwise, I've been taking the herbs whenever I do have a meal and it seems to be working! Yay! I could tell, but I won't be explicit, that not all my food was being digested. And, that means that I'm not getting all the nutrients I need to help my body keep up the production of red and white blood cells. In the end, the herbs she gave me seem to be helping so far.

I'm pleased. It's nice to minimize side effects of treatment!

Visit with the plastic surgeon . . . and side effects

I saw the plastic surgeon today and ultimately, he said that he would do the lat-flap surgery (use the latissimus muscle under my armpit) and that ultimately the timing of the surgery would be up to Dr. F, my surgeon. So, I'll wait a couple of days and then call Dr. F's office to schedule an appointment and talk about timing.

There's a part of me that wonders if the whole area would eventually heal itself. However, I remembered that the wound probably wouldn't heal as long as I'm on Abraxane. Dr. K would like for me to be on Abraxane for six months, which means that I'd end up with an open wound for at least that long. And, with an open wound comes the risk of infection, like I had last month. I also have a surface infection, too, which looks like a green discoloration on my dressings. It's "pseudomonisis" which is the bacteria that grows in your vases when you have flowers. I've been trying to get rid of it for almost a week now. It got a little bit better after I saw the wound care nurse - as she cleaned the area really well - and even though I've cleaned it with iodine once and have been trying to flush the area with saline, it's hard for me to do this without getting saline everywhere . . . Anyway, I guess I think that that armpit area seems to get infected easier than the other wound I had, so I might as well get the whole thing repaired to decrease that infection risk.

I told Dr. H (the plastic surgeon) that Dr. K (my oncologist) would be willing for me to take about a 6-week break from Abraxane in order to have the surgery, and probably even more so now that my tumor marker dropped so much in just one month, so that there will probably be very low levels of cancer cells running around in my system. Then, after I am recovered from surgery, I would go back on Abraxane to knock the rest of those cancer cells out.

I also asked Dr. H if he could trim the "dog ear" that was left at my beltline from the reconstruction surgery. He said that he would. I also asked if he could drop the implant down to match with the TRAM flap and he said that he'd rather not mess with it, since I have such a major wound on the armpit and he didn't want to open anything else up. If, however, cancer or bacteria got onto the implant, he said that it would have to come out. So, in the end, he said that he might bring in a spare implant and would try to drop it farther down into the pocket, so he might be able to make me more lopsided. That is, if the implant had cancer or otherwise had a risk of infection.

So, in terms of other side effects, I wanted to report that my scalp is now breaking out in zits. It's also pretty tender in some places. Now, I have to figure out how to take care of the scalp - one website said to treat it as you do your face, with milder moisturizers and cleansers.

In addition - and forgive me if this is too much information (Daria at LIving With Cancer also wondered about reporting these side effects the other day in her blog; in the interest of passing on my experiences to other cancer survivors, I'm telling my readers what's going on) - I have had some constipation (from the anti-nausea meds). I have some Chinese herbs from my acupuncturist that seemed to help me become regular again sooner than I did previously. But, last night, my stomach muscles starting cramping again. I think I reported that it seemed to do that the evening of my treatment. But this time, it happened three days later. It's been acting up all day, too. It seems to cramp up a couple of hours after I eat. And, I have had some mild diarrhea off and on all day and the cramps seem to get a little bit better afterwards. So, I started wondering if the cramping was happening in my intestines rather than in my stomach - and that they are cramping trying to get the food processed through my digestive system. So, I'm trying to drink lots of water. And, it's all complicated this time by having a head cold and taking some nasal decongestant medicines. (I am going to do my best to avoid crowds and public places while I'm on Abraxane - I don't need to deal with colds on top of my other health issues!)

So, a talk with Dr. F is in order sometime this week. I see the wound care nurse tomorrow and will also see what she says.

Herceptin . . . and Week-end News

On Thursday evening, I went to the cabin at Shotpouch Creek for an interesting discussion with an author named Jack Nisbet, who's written several books about various explorers here in the Northwest. The most recent book was The Collector and that was what we talked about over a dinner and a glass of wine. It was an interesting conversation - and I was able to talk some about the colonial predilection to collecting artifacts and how some indigenous peoples have had to fight to get their artifacts returned to them. Anyway, it was an interesting conversation and I met more interesting people.

Then, I had another Herceptin treatment on Friday. I was able to go to work afterwards - feeling somewhat tired, but not dog-tired-fatigue. I went to our department faculty meeting - we were discussing our policies with regard to our Ph.D. program. My legs felt slightly shaky (not a lot) afterwards, but not as bad as before. I think this means that my body is getting used to Herceptin - and I think Joanna from Colorado might say that I don't have as many cancer cells floating around. I hope she's right!

I went to the Drag Show with dad on Friday night. When I went a couple of years ago, they had some of the professional drag queens from Portland and Eugene perform first. They weren't able to perform this year, so it was just students. However, some of the students were great! I was pretty tired, though, and my butt and hips were sore from sitting in those uncomfortable chairs. Also, my lower back was achey, which was a result of my kidneys trying to process the Herceptin.

On Saturday, after getting to sleep in some, I ended up putzing around the house and running errands around town. I also worked on my mosaic - grouting around the tiles. I am using a grout that I can color different colors. I worked on it a couple of hours on Saturday, then we went to the OSU Pow Wow. We had a free meal there - salmon, wild rice, salad, yams, and huckleberry cobbler. Yum! After a few hours, I took mom, dad, and Eddie home and then went back to the Pow Wow to keep my colleagues and friends company. Not many people showed up . . .

Then, on Sunday, after sleeping in again, dad and I went to Home Depot to exchange some items for the side storage shed we're building. Then I worked on the mosaic, ran errands, took a walk with Eddie, and then, since it was so nice, Eddie played on his slip /n slide. My softball team had its first game of the season - I didn't play very well at all and my right shoulder is very tight still so throwing was difficult. It was fun though - a couple who played with us beginning 19 years ago and who have played in maybe 6 or 7 years decided to get back on the team. That was fun! We won 15-14 with no help from me. Then off to a local pizza place and a beer.

So, it was a great week-end. Luckily, I had energy and had fun with friends and colleagues. I'm glad that Herceptin isn't giving me the really bad fatigue anymore. It's nice to function somewhat normally!

I had a physical therapy appointment this morning - good thing as my right shoulder was feeling tight from softball. My therapist is loosening some adhesions and I think it really helps.

Anyway, life is good. Just waiting to get my Herminator-2 cells back. The countdown to "hermination" of the cancer cells is 17 days.

A good few days - with some Herceptin side effects

I had my latest Herceptin treatment on Thursday - and felt fairly good the rest of the day. Maybe a little bit of tiredness but not the eye-droopy fatigue I've felt before. I went into my office and printed some stuff off to work at home (not that I've touched it).

Friday, I went on an all-day fieldtrip with Eddie's class. We went to the State Capitol in Salem, then the Mission Mill Museum, and then the Pioneer Cemetery. We walked up to the top of the tower - where they have this huge golden statue of a "pioneer" which can be seen for miles. It was pretty cool but over 100 steps up. We had lunch in the plaza in front of the Capitol.

Mission Mill was interesting but rather than teaching kids about how mills used to work and how wool was made, she kept whizzing the kids through the exhibits (we had a "task-mistress" for a tour guide who kept saying, "okay, we're power walking!" - followed by a really brisk walk to the next exhibit where she'd start talking before we all got there. Then, since the people at the back didn't hear the beginning, we didn't know what she was explaining! That's not a good tour guide - that's giving the tour but not paying attention to your audience, which my students in folklore know is a crucial part of any kind of oral performance. Some of the parents, including me, would salute behind her back - mean, I know, but criminy!)

Then, after a snack, we went to Pioneer Cemetery and saw the headstones for people who died over 100 years ago - some as early as the 1850s, maybe 1845. Eddie had fun because he and the other boys started chasing the girls. : )

Then, we got back to Corvallis around 5pm. I had a great time visiting with the other parents (there were 8 of us and 14 kids). We got caught up, joked, helped some with the kiddos, and just enjoyed the day. We had high clouds, but by the end of the day, it was in the low 60s with some sun peeking out here and there.

By the time I got home, I was really tired. Took it easy by watching TV in my bed. My feet were achey from all the walking.

Yesterday, one of my friends from UAF was in town - she'd come down here to interview a few people in Salem and Portland, then went to Newport to visit an old friend of hers, and we spent a few hours hanging out. We went to Farmer's Market (with my folks and Eddie), then the New Morning Bakery for lunch, and then K. and I went to Fitton Green for a short hike. It was chilly up top with a stiff wind. We got back into town and I showed her all the flowering rhododendrons around the MU Quad and then Central Park, and then we stopped at Trader Joe's - she had to pick up some stuff for a friend. And, then she was off to the airport. It was great to visit with her - it's been a couple of years since I've last seen her. I love hanging with old friends!

I was tired again yesterday evening - just took it easy again watching movies.

Today? I got a good night's sleep - we may go to Home Depot to get supplies for a side shed, I want to grout my mosaic, I need to go to softball practice and sign the roster - I might go for a walk with a colleague. So a full day is in store, putzing around, doing errands, etc. It's supposed to be 70 and sunny. Got to get out and enjoy myself!

Overall, I haven't quite the fatigue I had with previous treatments. I'm still tired, but not the droopy-eyed fatigue. I still have the swollen lymph nodes - I thought there had been some decrease in the swelling last week, but now it's about the same. I'll call tomorrow for my tumor marker results from the other day. I credit the new herbs that Brodie gave me - they do seem to help with my energy level.

Happy Sunday!

Update - Vaccine Side Effects

I woke up Tuesday morning with more swelling in my lymph nodes in the left arm pit. They'd been painful for a couple of days. I decided to go back to taking Ibuprofen and after a day, the swelling went down to where it was last week.

My sleep had been interrupted with hot flashes, which I attributed to 1) rationing this one Chinese herb I was taking (Blue citrus); and 2) not eating an Anticancer diet. I went back to the normal dose - luckily I saw my acupuncturist yesterday - and have been doing fairly well with the diet: green tea, tofu, curry, veggies, and flaxseed on my cereal.

I had itching at the vaccination site for a couple of days - and the area was red until this morning. It's now almost normal.

I had fatigue on Tuesday and part of the day yesterday - I went to Bunco, though, with an old high school friend and some of her buddies. I won $5! (Well, I won $10, but I chipped $5 into the pot.) That was fun.

Today, I met with an incoming grad student and then we went to lunch with her and my Ph.D. student, and then had a meeting at the Longhouse. So, I didn't get any writing or research done . . . but building and maintaining relationships is a good thing.

This evening, I met with colleagues for a glass of red wine and visiting. That was fun! (Red wine is on the anticancer list!)

Tomorrow, I meet with my Ph.D. student again - then I have a parent-teacher conference with Eddie's teacher, then a faculty meeting, and then a committee meeting. I *hope* I can get some work done. I need to call an elder to schedule a time for an interview.

It was beautiful and 67 today - sunny - and that made it hard to think about working and more conducive to visiting. I had good energy today. I felt normal. The sunshine helped!

Thanks to everyone for being a friend!

Doing Well

One week post-surgery, I'd have to say that I'm doing pretty well. I don't have a lot of pain. I figured out why I had continued to feel light-headed and couldn't read - my eyes were dilated for a few days after taking off the Scopalamine patch!! The patch can also cause dizziness. This patch is often used for motion sickness and I wore one for three days.

I think my eyes are back to normal and I don't feel light-headed any longer. Yay!

I still have some discomfort in my abdominal area, but only when I cough. I have to be careful about how I stand up from sitting or how I sit from standing, but overall, I'd have to say it's been fairly easy.

I was pretty tired yesterday, though, feeling really lazy. Just watched some movies. I did a bit of work on my taxes. I hadn't slept well the night before. Dr. H says that while I'm healing, my body has a lot of metabolic demands. I need to take in a lot of calories. No problem there!

I slept okay last night, though. I have an appointment with Dr. H today - I will probably get the drains out and will be released to drive. Yay!

Life on the Edge

First, let me say that I am, overall, doing well emotionally, at least in terms of the cancer stuff. But I am feeling a bit overextended at work. It's a busy month anyway - was away at Univ of Oregon last week-end, I have one large and another smallish grant proposal due in the next two weeks, I have to do some reading and writing for a committee I'm on at NSF, and I also have to make revisions to an article by June 1. Then, Jeanne will be visiting soon and the week after that, I'll be participating in another symposium at Portland State. Hadn't intended to do either of those grant proposals, but the opportunities seem too good to pass up.

Something that I've begun to realize in the past couple of weeks is just how much on the edge I am. Another way to say it is that I have a delicate balance in my life. I do fairly well, for the most part. But I just seem to be knocked on my ass - pushed over the edge - lose my balance - fairly quickly - or at least a lot easier than I used to.

Last night/yesterday was a case in point. I spent the day with a friend - we drove to McMinnville and then had lunch and then we went to a nursery - we thought we might go to the outlet mall. I figured a day hanging with a friend would be fun and give me a change of routine. But I ended up feeling nauseous most of the afternoon and into the evening. I think it was due to motion sickness - I was the passenger and we ended up on some back roads that were curvy. Usually, when I eat, it goes away. It did for a bit, but then it came back. So, I incorporated some the strategies that my acupuncturist gave me, plus things that had worked in the past. These included eating, having candy/sugar, drinking peppermint tea, and wearing some magnets on accupressure points just below my wrist. I felt better by evening, but I felt slightly nauseous again this morning, so I've been wearing the magnets all day.

I also felt nauseous last week-end, after riding a bus up into the foothills of the Coast Range to go to a winery for dinner. By the time we got to the winery, I felt sick, but after eating I felt better, and then nauseous again on the way back to the hotel.

I guess what I'm trying to say is that I seem to be getting nauseous a lot easier than I used to in the past. This has got me a bit worried for plane travel because I do have a tendency to get motion sickness on the plane, so I'm beginning to worry that the nausea might deter me from traveling.

Also, being away from home for two days last week-end got me out of my routine - it wasn't the activities so much as it was eating on a regular schedule, taking the meds, etc. I'm gonna have to pay more attention to that, I guess.

But to get back to life on the edge - last night, when I felt nauseous, I started feeling really discouraged because I wondered if this was something I was going to have to deal with for the rest of my life - and probably when I travel. I like to travel, but I really really hate feeling nauseous. I hated morning sickness when I was pregnant and the nausea with chemo was absolutely the worse.

So, to make a long story even longer - feeling nauseous yesterday made me more discouraged than I thought it would. And, realizing that this is going to be something I'm going to live with probably for the rest of my life - well, that sucks. It sorta knocked me off balance - and almost put me over the edge again.

Time for an attitude adjustment, I think. I need to stay busy, but make sure I get lots of rest, and try not to overcommit. I need to stop feeling sorry for myself - need to take a lesson in doing that from Liz Kreger at www.lizkreger.com. She seems to manage to talk herself out of funks - a good model for me.

Really, I am doing much better tonight. Went with my sister, her kids, and Eddie to see Speed Racer. I like the movie - the sets and the costumes gave it a cartoon feel. Then, we went to dinner, I took the kids to the arcade, and now Eddie's cousins are staying the night with him. They're occupying each other and I get to chill out.

Update on Alien Hickies : )

I forgot to mention yesterday that on Monday night, after I had the "cupping", I slept really really hard - two four-hour stints, which is unusual for me. Last night was more my typical night - I think I woke up 2-3 times. Part of what my acupuncturist is trying to do is to help my body "retreat" (including sleep) so that it could heal. I guess what I'm trying to say is that while my neck looks funny, I think I had a better night sleeping overall because of the cupping.

And, my skin is continuing to heal, although the open wound seems to be weeping more. My guess is that because the wound is still open, and as I do lymph massage underneath the implant, I might actually be massaging the backed-up lymph out of the wound - I'm directing the lymph fluid down and toward the center of my torso, but backed up fluid could really go anywhere to drain and the open wound is a path of least resistance.

Since I've been doing lymph massage in that area under the implant, it seems that the red is starting to fade again (it had gotten more red after I painted the bathroom). Both my massage therapist and the radiation oncologist asked whether or not the red rash was really cancer cells or whether it was red from swelling/lymphedema. It's probably both and no one really knows. This just really shows the limitations of our knowledge of what's going on here.

Still no word yet on when I start radiation. It looks like it may be next week. I do think I have a couple of new little skin tumors growing - hard little nodules under the skin - so I think radiation is the best course to get rid of that.

I'm Doing Well, Thank You

It's interesting . . . several people asked me today how I was doing in reference to the meds and other treatments for metastatic cancer. My therapist mentioned that I haven't really talked much about it in the last few weeks.

My answer: I'm doing okay. I am getting some good sleep every night - taking away the night light and adding melatonin to my night meds, augmented by peppermint tea and massaging my feet with lavender before bed seem to be working fairly well. I think I've averaged at least 7 hours a night. I had good energy the past few days - and yesterday, I was busy from about 7am to 9pm, without much resting in between. I ran errands, worked on an article, graded papers in Eddie's class, worked on the article some more, and then paid bills.

It was nice. It struck me last night that yesterday was the first day in MONTHS in which I didn't get the late afternoon fatigue and wanting to just collapse and relax. Of course, I just gave a big yawn and am feeling tired today - maybe it's my body telling it I overdid it yesterday.

It seems with more sleep, I am tolerating the side effects better, too. I have had to alter my diet some - no spicy foods for me - and by using aloe vera juice to swish in my mouth and drinking peppermint tea, I haven't had bad mouth sores. I've been keeping my hands and feet fairly moist. My hands are sensitive to heat, so I am starting to take cooler showers and to use cooler water when washing dishes. I've had no nausea or diarrhea. I'm keeping the open wound, where the skin mets were, clean.

I'm even contemplating going back to a 3 Xeloda in the am and 2 at night schedule, in the hopes that more of the stuff will hasten the disappearance of the red skin rash.

In fact, my therapy session this morning had more to do with normal, everyday stressors and not cancer. And, that's a good thing!

I don't think I'm in denial. Cancer is always there in the back of my mind. It is nice, however, to go back to a relatively normal life again, spending time with my son, hanging out with friends and family, talking about playing volleyball and softball, writing those academic articles and enjoying it! I've been working on the props for Eddie's Price Is Right birthday party, too. Fun stuff.

It bodes well, I think, as I have a pretty full plate at work for the next few months - a couple of obligations for the National Science Foundation (reviewing proposals and then working on the committee for the Government Performance Reporting Act, and our meeting is in June), a symposium I will participate in at Univ Oregon in Eugene next month, a possible meeting with my colleague at Portland State with the Alaska Native corp leaders also in May, and a revision of an article I submitted to Etudes/Inuit/Studies. And, I'm organizing a visit by Jeanne Sather the third week of May; Jeanne will stay with me and do a blogging workshop, a presentation to the general public at OSU, and a talk in our Anthro department. And, then in August, my plan is to go to the International Arctic Social Science meeting in Nuuk, Greenland. Also, for the June trip to DC, I plan to visit Carver in Raleigh . . . I've never been to North Carolina. It'll be a short trip, but it'll be good to hang out with her for awhile.

So, yeah, I'm doing well, thank you. I appreciate your prayers and blessings and all around positive energy. I'm sure that it's helping! And, if you hear of a good boob joke . . . I'm still collecting them!

Managing Side Effects

Currently, I am taking Tykerb, five pills every day. I also take Xeloda, but now my dosage is 2 pills twice a day, Monday to Friday, with the week-end off. I also had my Zoladex injection in my abdomen. One major side effect seem to be facial breakouts caused by all three, but Tykerb gives me little white zits while Xeloda gave me big angry red ones. I also have had some trouble sleeping, again caused by all three - Zoladex gives me hot flashes which wake me up and the other two have "trouble sleeping" as one of the side effects. I also had a bit of nausea. I think I have some lymphedema around my shoulder blades and my ribs on my back. This week, I also started getting some dry, cracked skin, right at the edges of my fingernails. And, finally, I get mouth sores, bleeding gums, and red sensitive lips.

For breakouts, based upon what my acupuncturist says about the level of "toxic heat" in my body, I started using an aloe vera gel on my face. It cools the skin and also has antibiotic properties. Then, I use a little bit of Clearasil on a breakout, but not all over, because when I did, my skin around my mouth and chin really starting drying up. I had that awful situation where my skin was flakey but I was still breaking out. So far, the gel and the small bit of Clearasil is keeping the red angry zits away.

For sleeping, I started taking melatonin. I'm up to 8mg/night and on that dosage, I've averaged about 6-7 hours/night. So, for the last week, I actually feel normal and have energy. People tell me I've been looking great (considering) this week and I do feel great. Thank goodness! I hate feeling tired. Also, I do a few things to quiet my mind like deep breathing and massaging my feet with lavender oil.

For nausea, I saw my acupuncturist and since then, my nausea symptoms have been almost nonexistent. Yay!

For the lymphedema, during my massage last week, the therapist did some lymph massage and that seems to help. I found out that lymphedema post-mastectomy is not all that uncommon. I had some slight swelling on my back that, when pressed, felt pretty tender. The massage therapist, Mary Jane, also said to wear under armor - tighter t-shirts that you see athletes wearing that do some slight compression. That slight pressure helps move the lymph fluid, since there is nothing pumping your lymphatic fluid around like your heart. Not sure how your body helps it move, maybe through the daily constriction and stretching of your muscles, but compression and massage help it flow. That's why they see things like tai chi or yoga help.

The company that manufactures Xeloda gave me a free tube of "Udderly Smooth" for the hands and feet. I started using that pretty religiously on the dry skin around my fingernails a couple of days ago and that seems to help, too.

And, finally, for the irritating mouth sores, my acupuncturist suggested swishing with aloe vera juice because of its cooling properties and also for its antibiotic properties. She also said that drinking peppermint tea also helps cool things down. What I've found is that the aloe vera juice help keep the sores from getting worse, but they didn't disappear. After drinking the tea the last two nights, I found that any mouth sores that I felt developing disappeared. Also, my whole mouth felt hot, but I could actually feel this wave of coolness in my mouth when drinking the tea. I've had peppermint tea before and I never had that feeling before, but now I can really feel it.

Anyway, just wanted to pass on some strategies for helping with side effects like this . . . they are relatively minor and now that they are coming under control, I feel good and am continuing to see improvement! Yippee! Thanks to everyone who suggested these strategies. Combined together, they do wonders for my mood! Happy Spring Break!

Doing Okay, Despite Three Needle Sticks

I am beginning to get more sleep these past few days - I've had at least 6-7 hours in the past 4 or 5 nights and I even had one night of 9 hours. The sleep does wonders for my mood and energy. I have upped my dose to 8mg of melatonin - studies indicate that 75mg can be taken daily without any ill effects, other than feeling drowsy! But that's the point, right?

I also had my Zoladex injection today - that's the pellet that goes into my abdomen and is slowly released over a 28-day period. It shuts down my ovaries. No problems, there. But today was also a day for blood to be drawn for lab tests. Dr. Kenyon wants them drawn every two months. I warned the nurse, Joan, that my veins on the left arm are hard to stick. She found out the hard way. Anyway, I have three needle marks in my left arm. Sigh. That's a long-term side effect - scarred veins- of the adriamycin and cytoxan from five years ago. And, they wonder why my blood pressue goes up whenever I have to have my blood drawn.

I also started Xeloda again this morning. So far, so good. Still seeing improvement in the skin on the right side.

But, I may have some lymphedema from the surgery. I didn't realize until about 2 weeks ago or so that my back - around my shoulder blades and ribs - was tender until Scott tried to give me a back rub. He put a little bit of pressure on that area on both sides and I just jumped. I ended up concluding that I may have some lymph fluid backed up from surgery. I checked with my friend, the surgical nurse, and she said that there shouldn't be any pain from the drain areas, although they are still not completely healed up. And, Debbie, my friend Tammy's sister, who works at the hospital, said lymphedema on the back is a side effect post-mastectomy. I will mention it to Dr. Kenyon when next I see him. In the meantime, I had a wonderful massage from Mary Jane at the Heartspring Wellness Center. Mary Jane (who my friend Don just raved about the other night at cards) did lymph massage on my back, after Brodie (my acupuncturist) rubbed it with a scraper implement last week. I think it helped. Mary Jane also said to wear Under Armor (you know those tight shirts that you see football and basketball players wear under their shirts?) to try to help the lymph fluid move a little bit better. So, I found some of those at Joe's (still G.I. Joe's to me - I know they are getting away from the military connotation of G.I., but maybe if they kept the initials but made them stand for something else like "Game Innovators" or "Got Implements", it'd be easier on those of us who grew up with "G.I. Joe's"). We'll see how they work!

Oh, I forgot to wear green today. Luckily, I had a beaded bracelet with green on it that works. Happy St. Patrick's Day