Frustrated

A new anti nausea med (Raglan) seems to help, but I still have no appetite. I am afraid if I eat anything too solid, I will get bad constipation. In the meantime, I think I have lost even more weight, even though I try to force myself to eat something.

So I am frustrated. Afrid I will waste away to nothing.

Maybe I need to go into the hospital to get nutrients, fluids, and strength.

I feel like I am wasting away. But dad thinks I am gradually getting stronger. My fears are getting the worse of me today.

I did stay at Eddie's party for an hour yesterday, longer than I thought in the heat.

But I stayed home today while my patents went to the state fair with Eddie.

My family is trying to help me through this time. I am so thankful they are here.

Eddie, I am going to do all I can to be here for you. You are important to me. I love you very much.

Herceptin tomorrow

I was supposed tom have Herceptin and Zometa on Friday, butnright before my radiation treatment, my stomach got so bloated and was cramping that I was in tears the whole time during radiation. The docs wanted a blood draw, but the nurse at the radiation center couldn't get a vein so I wet to Ambulatory Infusion. The nurses there are upset I had the port taken out since it makes it harder to access a vein but the kink in the catheter, pain and loss of range of motion was too much.

The new symptom was like the one that broke the camel's back. Other side effects I have are:

- fatigue
- pain in my arms and shoulders
- yeast infection in my mouth
- constipation
- occasional headaches when the steroid wears off
- lymphedema
- arm wound is weeping lots of fluid so after awhile, my shirt gets wet
- bald
- weakness and shakiness
- numb fingers in my right hand - the shakiness makes it hard to write, even my signature

Meds that I am on to counteract side effects:
- steroids (but weaning off them)
- dilaudid
- fentanyl patch
- occasional Tylenol, for the headaches
- Valium to sleep mat night
- medication for the yeast infection
- gas-x for the bloating
- stool softener
- Chinese herbs
- probiotics
- an acid reducer

I am feeling a bit better today, although I may have stayed up too long cuz my left arm got swollen. Laying down with my arm elevated helps with the edema as well as the pain.

I am worried about getting through Herceptin tomorrow as I couldn't handle it on Friday. Just worried about being comfortable through it. I also have radiation (6 more sessions) and will see Dr. K. But I got through Friday as I was away from the house for three hours and had calmed down by the time they drew my blood. So that is how ai will get through tomorrow - one thing at a time. I think I am also supposed to get my CEA.

My dad has been great about getting my meds. Eddie has been understanding, too. And I think that I am a tad better today than yesterday. So I will continue to take things day by day. I have much to be thankful for - a supportive family, a great care team (the radiation nurse stopped by at home today and yesterday to change my dressing - send her blessings, too).
Thank you so much everyone! Life is still good. I hope to get outside some to enjoy the deck and maybe entertain visitors. Thank you all!

Living with pain

As I am trying to recover from the WBR and the arm radiation, mostly by resting, I do live with constant pain. I mean, the fentanyl patch takes the worst of it away, but I do take every 4 or 5 hours for the arm and shoulder pain. I keep heat on my right shoulder and back but the front of my right shoulder, my bicep, forearm, and sometimes my right wrist hurt, so I keep heat on that, too. I guess the idea is to be comfortable, so I try to domthat as much as possible.

In the meantime, dad has taken over some duties tom take Ed on outings. Eddie is at swim swimming lessons now. I have said it before and will say it again - thank goodness for family!

I just wish I wouldn't tense up ny right shoulder. Not sure why. Well, anxiety, I guess. But I should concentrate on rest nd recuperation now, then worry about the anxiety later.

I plan to ask Dr. K not to start any heavy duty chemo for four to six weeks. I want to gain strength first. I will just do Herceptin and Zometa for two more cycles and then see whatnis next. I have Herxeptin this Friday. Hopefully that will keep things under control for now.

I continue to be thankfulmfor everyone's support! Thank you!

Being Truthful

Yesterday, I decided to be truthful on facebook and got such an outpour of support that I wanted to say thank you.

My dad says I always put a good face on everything and mentioned that no one else really sees what I am going through. In the end, this week, I have been crying a lot and worried that I am on a downward spiral. Dad reminded me that my blood counts are good, the tumors aren't growing, and I am doing treatments to keep more things from growing. My weight is stable, too.

But there are side effects, including pain and fatigue and nausea. The nausea and fatigue should start going away in the next few weeks. I am not sure of the pain, though. I hate being on pain meds, but if it means I can start operating somewhat normally soon, then so be it. I am on the fentanyl oath, but take an additional dilaudid every few hours. Dilaudid makes me tired, which is okay for continued rest.

I am not really good company right now and sorta just want to hole up at home and rest. I will let people know when I am feeling upmto visitors. Thanks to Jeanne for giving me permission to be lousy company.

As people remind me, I have been through a helluva lot these last few months. Four surgeries, pus three weeks of radiation with two more to go. I will ask my parents today to do a light massage on mt left arm to try to move the fluid into my back and lessen how fat my arm is. That might help decrease the pain. I think the numbness in my right middle finger is better, but it is hard to tell. Because of the numbness in my right fingers and the swelling in my left, I can hardly lift anything.

I just hate feeling so weak and shaky. But time heals, right? Just got to give it time.

Thank you to everyone for reminding me of my strength. I don't feel strong,but maybe now I am drawing on that strength to get me through the next few weeks.

Another big thank you to my family for helping me and taking Eddie on outings. I hope to do that again soon.

Continued taking it easy

I am continuing to take it easy. Dad and Scott continue to work on the deck - it wile really cool when it's done! Mom and dad are out running errands. I am finding it harder to find movies on TV today, but they are there.

I slept okay last night, too, although my TV was on most of the night. Seems like I might wake up every couple of hours, fill my glass with ice, and eat some fruit snacks. Seems like these fruit snacks work really well for me.

I think the Dilaudid is making me constipated, but better that than feeling pain. Will get Chinese herbs to help with that.

My neck and shoulders really hurt when I woke up about 10pm last night, so I lowered my pillow and that helped for today. Still used a lot of heat to loosen up.

I get tired every time I take Dilaudid, but that is better than not sleeping.

I didn't even take a Zofran today. Let's see how ling that'll last.

It is a sunny day, but not as hot as yesterday, thank goodness. Seems to make my lymphedema worse. But resting as my doctors ordered.

Enjoying myself in Lincoln City

I have been enjoying myself so far in Lincoln City, but I still need to rest a lot. I wasn't nauseous yesterday but was today and that is because I started alternating my meds -yesterday I had the antibiotic and today the Tykerb. Turns out the Tykerb gives me more nausea. I was nauseous on our way to the coast on Saturday, until after lunch, same as today. Because I was nauseous Saturday, I decided to alternate the meds so I could enjoy myself more.

Took two naps Saturday evening, slept okay Sat night. Didn't sleep real well last night. My arm and shoulder get achey and I can't get comfortable. I wake up every 90 to 120 minutes at night.

I am also not wearing the compression sleeve because it seems that my infection in the armpit gets worse when I do. So, I will put up with a fat arm until that wound heals. Maybe I won't get an infection since there won't be open skin.

I don't know if I reported this or not, but the neurosurgeon advised me to do whole brain radiation. I think I will do gamma knife for now and then do WBR radiAtion later this summer. I have been getting a headache behind my right eye on occasion, which makes me think the tuner is there.

So it is a hard thing - take the antibiotic and feel better and heal the wound or take the Tykerb to keep any more brain tumors from growing and feel more nauseous (my digestive system is still healing so I think that is why I feel nauseous with it.) I am erring on feeling good right now since I am at the coast and hope I can get gamma knife for the tumor next week, when Eddie is out of town with his dad.

Have taken several walks on the beach and try to practice my "shee-shee-whoo" breath when I do. Turns out I can walk to Roads End Park, walk to the beach, then walk to the casino,then walk on the beach a short way until I find the path that takes me to them road our house is on. Takes maybe an hour, but usually longer since I spend time in the casino. So far, I think I am $30-40 to the good.

So it is good. The weather hasn't been great so I can't hang out on the deck as much. But good walks on the beach. I do feel more relaxed since I don't have appointments.

We are all fairly lazy. Eddie is having fun with his cousins. So it is good. I just wish to he'll I felt stronger and slept better.

It was a good day . . . A good day indeed!

Today was absolutely beautiful in the valley. And I felt good. I had at least 7.5 hours of sleep AND I didn't have diarrhea - thanks to the Immodium. So I had plenty of energy to take Eddie and his cousin - excuse me, I didn't take Eddie, but I joined my son and nephew to the new water park, Wings and Waves, located about an hour north of here. My brother Scott actually drove and supervised the boys since I couldn't go in the water because of my wounds.

I will say that I think ALL the boys had fun. I think my brother surprised himself. I enjoyed watching them, although at times, I was too hot. But it was worth it to see the smiles and to watch all three guys so active.

I actually wrote about 800 words on an article that is due July 1. I am only about 25% done, but it was a great start. The hard part will come next as I need to research some information.

I also worked on some puzzles.

Two strangers asked me about my compression wrap. I just replied, "They took some lymph nodes, so now there is swelling. This wrap is trying to get rid of the swelling." then I didn't volunteer any more info. One man was a Viet Nam vet and his arm was very scarred misshapen. The other man said his wife broke both her arms in three months. I just smiled and said I hoped things were better now.

We came home to a cooked meal - thanks, mom!

I am now officially tired, but it is a good tired from having gone out today. It feels good!

INCREDIBLE!

Wow. I would have to say the work party was a huge huge success!

A huge thank you to Karen, Shannon, Frederick, Alex, Joan, Henk, Elaine, Nancy, and Mike for all of their hard hard work.

The beds were weeded.

The front walk was weeded.

The grass was removed from the bushes near the fire hydrant.

The shrubs on the side of the house were trimmed.

Two new beds were built and an old bed with rotted wood sides had the wood replaced.

Dirt was hauled to fill the beds.

Debris was removed from the raised garden area.

My meditation area was weeded.

Everyone said they enjoyed working with other people - they visited. Two people discovered they knew people in common.

They only ate about half the food I bought, which means we have plenty for dinner.

Wow. It looks great.

Several said they want to come back and work on other projects - one even said to organize another work party.

Wow. I am humbled by all the help.

It is much much appreciated. Thank you everyone! I am so blessed to have so many people willing to help. Thank you!

Anxiety leads to less sleep . . . but the day is ending on a good note

I started Tykerb today. I've had it before with hardly any side effects - a tad bit of diarrhea until my body gets used to it. Some white zits on the face, but otherwise, I tolerate it well. But I wasn't sure how it was going to interact with the anti-seizure medicine (which also, coincidentally, has diarrhea as a side effect).

Before bed and throughout the night, I was anxious about taking it. I want to take it so I can start taking care of any cancer cells in my noggin - and in my skin - but anxious about potential drug interactions.

I was also anxious about my decision to do the surgery next week, not sure that I was really making the right decision.

As a consequence, I only got about 4-5 hours sleep. I was tired all morning. I took Ed to school anyway and then got the oil changed in my car. But I did have some diarrhea and felt a little shaky as a result.

Then on my way home, I got a call from Eddie at school - he apparently needed something I thought was already graded and I put it away, so I had to run it to his school.

Then I saw the radiation oncologist. I was so tired and anxious that I admit to being weepy with both the radiation nurse and the radiation oncologist. The nurse said that my weepiness was to be expected and that my anxiety was warranted. But she also added that I did look really well, under the circumstances. My heart rate was still high as was my blood pressure - either still getting the steroids out of my system and/or withdrawing from them. She was very reassuring.

The radiation oncologist came in - and either she or the nurse (I can't remember now) - and they said that at their morning staff meeting, my name was mentioned and I guess it was generally agreed that I had made the right decision to do surgery next week. She understood the reasons - especially that the damn tumor was so visible to my own eyes and she said she might make the same decision to do the surgery so she wouldn't have to look at it anymore. She also said that I was "strong-minded" and that was what a lot of people admired about me and how I take charge of my own care.

I told her about the research I found about brain mets - that people who stay on Herceptin actually survive fairly long after a diagnosis of brain mets as long as the cancer is controlled below the neck.

She was also happy that I chose to take Tykerb for its preventive effect on the brain. I will be able to stay on Tykerb through the surgery. She was going to check and make sure that I could stay on it through radiation.

After some discussion, we decided on 14 more treatments of radiation as she can deliver a smaller dose. If I were to only do 9 or 10 sessions, they'd have to do a larger dose, but research has shown that there can be some cognitive defects in the long -term (years later) and since the research shows that it is possible that I will be alive a longer time than Dr. K said I might, she wanted to opt for the smaller dose. She also assured me that everyone admired how I continued to live my life - doing fun things and working and all - with everything I've been through.

I won't be prescribed steroids unless I start getting nausea or other symptoms that indicate that there is increased swelling. YAY!

We decided that we'd start the Monday after the surgery - beginning June 27 - and doing 14 treatments. Just in time for us to go to the coast the next week, where I can recuperate.

So, I get another week to recuperate from everything that has happened thus far and adjust to taking Tykerb (I see more yogurt in my future), then surgery, and four days later, I start radiation. Three weeks of that and then a week at the coast.

I received hugs from the nurse - I think the doctor, too - and one of the radiation techs. The doctor's son is the same age as my son and we talked about how both boys have recently discovered laser tag. I told everyone we were taking my son to Chuck E. Cheese to celebrate his last day of school. Eddie and I have gone there the last 2 or 3 years and now, as Eddie says, it's "tradition", so he really wanted to go.

But since I don't quite trust myself to drive long distances on my own, I invited mom and dad to go with me. They went to the mall and shopped a bit, while I read a book ("Water for Elephants" that I borrowed from my colleague, B.), and Eddie used all his tokens. A huge thank you to dad for driving. I think it was nice for all of us to have a change in scenery.

On the way home, Dr. K's office called, but didn't leave a message. So, I called back. The nurse called me back later and we finally figured out that they wanted to tell me the results of the echocardiogram from the other day. I was nervous that there was something wrong and I'd have to go off Herceptin or something.

The news? Everything is within normal limits. My heart is fine - my ejection fraction was within normal limits. The high heart rate and blood pressure is probably more due to the steroids than anything else.

Whew. Thank goodness SOMETHING is normal. Given everything else that's happened, normal is good. It's very very good.

I should have a good night's sleep tonight as all that I worried about last night is okay. Only some diarrhea (which I will get under control), my decision to have surgery was sound, and my heart is fine. And, Eddie and I got to carry on "tradition" with my parents' help.

Thank you, everyone, for continuing to keep me in your thoughts, prayers, etc. I very much appreciate it. I am good.

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!

Thank goodness my family lives with me

About a year and a half ago, my folks and my brother moved in with me - for financial reasons.

We have worked out a system - I pay the bills (except groceries) and they take care of the house. They do the grocery shopping, cooking, cleaning, yard work. I mean, I make sure that my areas and Eddie's areas are clean but since they are here all the time, the housework kinda fell into their hands.

It's been nice not to have to worry about grocery shopping and all that. I had plenty of other things to do with work, my own appointments and Eddie's activities. I feel very fortunate.

But this morning, I realized just how unable I am to take care of myself. I mean, I am able to wash up and wander around the house and get my own food or drink.

But I am completely unable to shop or drive or run errands, pick up or take Eddie to school. At the moment, I am homebound.

It occurred to me that other people would not have this kind of live-in help that I do. I can't even imagine how difficult it would be to have to ask for help all the time. There is something about how easier it is to ask family for help. AT least, in my case. People that I know and can talk are giving me assistance.

Last night, for instance, I decided to get a prescription sleep pill. I was able to ask dad to run to the pharmacy and I had the prescription in less than an hour. Dad is also driving me to my appointments. Scotty took Eddie to Wacky Bounce yesterday.

Thank goodness for family! Thank you, mom, dad, and Scotty. It helps tremendously!

It also occurred to me that my recoveries from these surgeries are gonna take awhile. I am now about 10 days post-surgery and can't fend for myself. I have another surgery on Wednesday and I think that I can expect at least a couple more weeks of not fending for myself afterwards. I feel a bit weak standing and walking still. This morning, I woke up and my middle finger was more numb, so I took a steroid pill. Didn't take any yesterday, but I'll take one today and see how things go. I hope after this next surgery, I won't have the numbness and unsteadiness to deal with. And, I hope I can sleep when I come home. I think my recovery will go faster if I can.

And, so it goes. I am trying to be productive - but it's things like balancing the checkbook, paying bills, etc.

CEA Result - and a nice visit with my godparents

I just got my new CEA result - updated from 3+ weeks ago. It was 12.4. It was 5.4 (or 5.6?) at the beginning of the month.

So, that indicates the remaining brain tumor. But my inquiring mind wants to know how long those tumors were growing - because in theory, when my CEA was 41 or higher, the tumors could've been there. But then it fell to 5 after surgery after the majority of what active cancer was in my body was taken out with the April 1 surgery. Or maybe the brain tumors weren't there until I stopped targeted treatments and Chinese herbs prior to surgery and they grew rather quickly because I didn't take them for a few weeks because I felt so tired and fatigued. If the tumors weren't there before surgery and started growing in late April, they grew fast. That's a disturbing thought. So, I don't know how long they've been there or if stopping targeted treatments and herbs caused the brain tumor growth. I just don't know and that bothers me.

The CEA may go up briefly, too, as I get radiation as that indicates rapid cancer cell death. And, maybe the 12.4 is an indication of some of that rapid cancer cell death after the first whole brain radiation treatment. I already have a little less weakness in my hand and I'm steadier on my feet so that tells me that some of the swelling has decreased in my brain - partly attributed to the steroids but I can also say that radiation helped.

The bottom line is that we really don't know. Joanna, in a comment to my earlier post, said that my life is better because I choose not to worry about things I can't change. She hit the nail on the head. I can't change that fact. I can only change how I keep the damn stuff from continuing to grow. And, that is worth more of my brain cells than worrying about why it all happened or how long things have been growing or what I did wrong. Who really knows? But I can do something for the future. : )

My godparents came down from north-central Washington yesterday and got in a bit late, but we visited for an hour before I went to bed. They hung around for most of the day before heading back up to Portland, where their son was at a meeting. It is a good 9-10 hour drive and luckily they are retired. I couldn't believe they made the trip, but when I asked why, they said it was because they've learned that if they have time, they need to make the effort to see people because you never know when another chance may show up. It's very very true. No time like the present, eh? I think we're going to go plan to visit them in August, after my son returns from his trip back East. They have the Omak Stampede and that might be a fun time to visit and see people I haven't seen in many many years.

I feel very very fortunate to be surrounded by so many good people. It touches me more than you can know. Thank you!

Sunny Days and Energy

On Saturday, it was beautiful here in the Willamette Valley, especially through the early afternoon. It was sunny and nearly 70 degrees out.

I had a sponge bath (no showers yet while the wound in the armpit still heals), then went Easter shopping for Ed and found a couple of button down shirts for me. Then my folks and Eddie and I went to lunch. Then, I took myself to urgent care for a dressing change. I then took Eddie to the park. I rested on the bench while he ran around with a former classmate and a new friend. Then, in the evening, he went to Nerf Gun Night. I dropped him off at 5:30pm and picked him up at 8:30pm.

A busy, almost normal day. I rested between activities.

But yesterday, it was cloudy and rainy. I was lazy. I think the only thing I did was go to urgent care. We watched a couple of movies on Netflix (Salt and one with Julia Stiles called Cry of the Owl which was strange and weird). My brother Kevy came over for dinner with me and my folks. Mom made turkey and other Thanksgiving goodies. It was good! Thanks, mom! (Scotty has been in Albuquerque visiting a friend. Ed went to his dad's.)

The doctor at urgent care, who changed my dressing both days, thought that the wound looked better on Sunday and also thought there may have been less drainage (i.e., less bleeding).

The wound, the last few days, has less serous drainage. Instead, it's bleeding more. I'm not sure if that's a good sign. I'll find out today as I have an appointment with the plastic surgeon. I plan to talk to her about why I wasn't prepared by them for still having an open wound afterwards. I will also tell them how long the wound had the infection - until last Tuesday or 2 1/2 weeks.

I also took the transparent film dressing off the skin graft donor site on my thigh. I was nervous as I thought it would stick, but fortunately, while I had to tug in a couple of places, it didn't stick or hurt. I am able to wear pants with the fabric rubbing on the area without it really bothering me.

So, more progress. I think I will be able to teach tomorrow. Finally!

Thank You Time

People have been so kind to me and my family after surgery. I have been the recipient of gifts and my family and I have received meals and other food.

First, I want to thank my colleagues for taking over my class the last few weeks: Bryan, Nancy, Joan, Missy, and Leah.

Second, I want to thank Melissa (a mom in my son's class) who made us a pasta meal and salad and dessert, Rebecka who made a pot pie enough for 2-3 meals, Jyl who made my family hamburger soup while I was in the hospital, Joan who brought over chili and salad, Nancy who brought over cornbread, and Elaine who made us cinnamon rolls.

Third, I want to thank Kai, Phyllis, Beth, and Karen and Brenda for giving me gift certificates for a mani/pedi, for a meal out, and to purchase whatever fun thing for myself.

Finally, I want to thank Alex, who offered to give me a ride this morning (still not released to drive while I'm on Dilaudid - but also because I don't quite have the freedom of motion in my left arm). Plus my folks for taking care of me - my dad for giving me rides to all my many appointments, for my dad and brother for picking up or dropping Eddie off at school, for dad and brother for running to BK for sausage-egg biscuits (I crave protein), for bringing me potato chips (another craving - I think I'm trying to build up my potassium reserves), and for cooking and cleaning around the house.

Thanks again to everyone who continue to keep me in their thoughts, prayers, etc. Everyone who sends me blessings and good energy. I appreciate it all.

It's sunny today. There is much to be thankful for, right?

Dad's Home . . . and Fatigue . . . and Flexible Spending Accounts

Dad came home yesterday afternoon. She is finally eating more solid foods and we are all working to figure out our new roles in the household. I expect we'll continue to settle into these new roles for awhile.

I have also been experiencing fatigue in the late afternoons and evenings. I still manage to get out and about sometimes, but I'm really just gonna try to sit and relax as much as possible.

I also signed up for a healthcare flexible spending account and while I occasionally have issues with insurance reimbursements (taking sometimes over two months to get reimbursed for acupuncture) and with the billing department at the hospital or the clinic, I must say working with ASI Flex has been a real pleasure. They are prompt with the processing and reimbursement of my claims. I filed a claim on Sunday evening and was reimbursed by Thursday. A heck of a lot better than 2+ months for insurance reimbursements. The flexible spending account also allows me to claim up to the amount I contribute over the year, even if I haven't paid the full amount into the account yet. So, for instance, if I have $1000 taken out of my check over 12 months, I can claim the whole $1000 in January if I want to. What this means is that at the beginning of each calendar year, I have a $1,000 out of pocket maximum. That often means that I will get a bill from the hospital for about $1000 in March - so while I haven't paid that much in yet, I can still claim it and pay the bill. This week, I got the reimbursement before the bill was due, so now I have the cash to pay it. Whew! The money they take out of my check is also pre-tax dollars, so it lowers my total tax bill.

It's always nice to end on a positive note, eh? : )

Thankful for Family and Friends

With everything going on with my dad (who received a the permanent pacemaker yesterday evening), I must report that I'm thankful that my siblings have taken on a bigger role in taking care of my parents. That's a good thing since I'm still anemic and get tired in the evenings.

I've also stayed busy hanging out with friends and family.

On Monday, I had lunch compliments of the colleague whose class I taught in - thanks, M., for lunch!

On Tuesday, I had lunch at the hospital while I was getting my infusion, but it wasn't enough so then I had lunch at McMenamin's (no, O'Callahans, no, McGillicuddy's, no O'Flanahan's; LOL, Reen!) with my sister, who bought lunch for me! Thanks, Reen!

I was going to go visit dad Tuesday evening, but my godmother (my godparents arrived yesterday after a bowling tournament in Reno so they could visit Dad) told me I looked tired and should stay home. So, I did. I still paid bills, though.

On Wednesday, I had acupuncture, then lunch with a friend from high school (Thanks, L., it was fun getting caught up!). I was pretty tired after school and into the evening. I still had dinner with another friend, B., at McGrath's. Yummy!

Today, I met with Dr. K., who agreed that I shouldn't wait until April 22nd for surgery. So, he was able to get hold of the surgeon at OHSU, who reported that he was trying to find a different plastic surgeon who could get me in sooner. In the meantime, I've been putting turmeric spice on the dressing and, while I have no empirical evidence, I tend to think it's helping to slow the growth of the damn thing under my armpit.

I also broke part of a tooth under a filling a few weeks ago, so I finally got into the dentist today (canceled last week because I had a fever). The decay was further back than expected, so they may have gotten close to a nerve. Because I'm on Zometa, it's very difficult to do root canals or extractions as the bone doesn't heal. We don't want to have to go that far, so we really have to watch my teeth for signs of decay to make sure it doesn't get far enough to need a root canal or extraction.

This evening, I'm having dinner with a grad student whose been working for me. That'll be fun to get caught up.

In the meantime, my dad is due to come home this afternoon. My colleague, K., offered to let us use her recliner for awhile, while dad recuperates. (Thanks, K.!! It is much appreciated.) My brothers made room for the recliner by taking apart the futon couch - we put the mattress under Eddie's loft bed and the frame is out in the garage. (Sheesh, someday, I would love either more storage space or to do another decluttering effort.)

Tomorrow, I meet with another grad student who works for me and will have lunch with a colleague about our spring term course.

So, life continues to be busy. I am thankful to family and friends - family for taking care of my folks, to friends for their company, and to colleagues for their ongoing support. Thank you!

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!

Increased Pain and Dad is Still in the Hospital

I've been getting increased pain and am trying to figure out the right dosing schedule to keep me relatively pain free. I take the gabapentin (generic neurotin) in the morning with breakfast then a few hours later, I'll take Tylenol, then gabapentin with lunch, then Tylenol, then I guess I took Tylenol in the evening since gabapentin makes me tired - so I'll take that right before bed and I end up sleeping really well.

I think I may have mentioned that OHSU will not be able to get me in for a surgery until April 22. Since I think the lesions are continuing to grow, 7 weeks seems a long time to wait. So, I decided to try turmeric - I tore apart the capsule and am now sprinkling the spice on my dressing and putting it directly on the wound. I started it last night. We'll see if it makes a difference. I think it might be making it drain less, but I don't know that for sure.

Also, I may have caught some kind of respiratory infection - I seem to be coughing more but usually only after I eat any hint of sugar (even a clementine made me cough) or dairy.

As for my dad, she "crashed" on Friday night - her heart rate went really low (into the teens), so the "rapid response team" came into her room (all 6 of them) and worked on her. Good thing she hadn't come home yet since they could get help to her really fast. She also went low again last night with a heart rate in the 40s. She's also nauseous, probably from the antibiotic (Levaquin - which made me nauseous) and is back to not eating much. The docs decided to give her a permanent pacemaker, which we thought might happen tomorrow, but dad's white blood cell counts are high, so she may have an infection. If so, they don't want to operate until that's under control - they could infect the heart. They are taking blood cultures and doing other lab work to see if she has an infection. They won't know the results until Tues, which means the earliest she could get the pacemaker is Wednesday.

And, so we wait . . .

A Friday

I canceled my dental appointment today - figured if I'm fighting some infection, I shouldn't have dental work done.

I took Eddie to school. Then relaxed for a bit, took mom to the hospital, then went to my office to meet with a student. We had a great conversation - this is one of the reasons why I love my job.

But because I was still tired, I came home. Watched a movie. Tried to work on a syllabus, then picked Eddie up from school.

Relaxed some more. Worked a bit more on the syllabus.

Then, it was time to go to Eddie's school's auction. The food was good and got caught up on the latest with a couple of other moms. I helped a bit with data entry on the silent auction items, then I got tired when I finished that part, took Eddie and came home. Good thing, too, my dressing was just starting to leak.

Dad was supposed to come home today, but she had a bit of a panic attack and had some arrhythimia, so they decided to keep her until tomorrow.

I'm going to take Eddie to play laser tag tomorrow and we'll meet the son of another of the Puttin' on the Pink models. That will be fun. Other than that, pay bills, submit claims to the health care spending account, work on a syllabus, and work on a powerpoint for Monday's presentation.

Whew.

Oh, I forgot. OHSU is not able to schedule the surgery until April 22nd. Something about how one of the docs didn't have an 8-hour block of time for the surgery. Which sucks because the mass under my armpit is growing slowly and causing some more pain. My brother accidentally bumped into my right shoulder yesterday - and his shoulder hit one of the growths. It hurt and now that particularly growth has like a black or dark purple bruise. In other words, the sooner I have surgery, the better.

I'm going to have a Herceptin treatment on Tuesday, but I'm thinking something more drastic is going to have to happen sooner rather than later.

Yeesh

I felt chilled all day. I finally took my temperature and it was 100.0. Dangit! I don't know if it's a cold/flu virus (I have been coughing, but usually after having a little bit of dairy (butter on a bagel) or a bit of sugar. Maybe my wound is infected.

I also had a really bad charley horse last night in my left calf at 3:30am. I finally got back to sleep and when I woke up, my right foot (underneath) and calf were cramping up. Sheesh!

So, I tried to drink lots of water today. But just a few minutes ago, the top of my left foot started cramping. Luckily, my brother is a night owl so I sent him to the local 7-11 to get tonic water since everyone on facebook said that it helps. Thanks, Scott!

In the meantime, they decided that dad had a mild case of pneumonia. She had a bit of a temperature last night and then I guess they had to change her gown three times because she broke out in a sweat. So, they put her on antibiotics today and they have lowered the oxygen level. They also took out the pacer wires and did some kind of procedure where they thumped her back while she breathed into a tube. I think it was supposed to shake up her lungs. But it means that she won't come home for another couple of days. When I visited her, she was more animated, so that's good.

No word yet on when my own surgery may be.