There are so many good people in my world to make up for some bad apples

Yesterday, I got really really upset at someone - unfortunately I can't name who - but it was painfully obvious that this person had no compassion for my health situation nor the upcoming changes to my financial situation. My family and I even got this idea that this person might think that life might be easier for that person if I just went ahead and died.

Well, it fired me up and gave me energy and I actually did more research on the computer than I have in a long while. It felt good having that energy. And I have some follow-up phone calls to make.

And then someone came through with a solution I needed and reminded that there are far more good people in my life than bad apples. And I want to thank that person from the bottom of my heart. It has relieved some of my financial situation immensely. Please send this person blessings and prayers for me. Thank you!

Haven't fallen off the face of the earth

I have been busy the last couple of days. Went to Eddie's swim lesson, then lunch with friends, then two appointments. Overdid it in the heat.

Today, I had an eye appointment and the doctor kindly changed out my contacts for me since my fingers are shaky and numb. Offered to do it again next month if I need it.

Then I had a nice long visit with one of my oldest friends, Paula. We have known each other 25 years. Her visit buoyed my spirits. She took me to my appointment, too.

It got too hot today, so dad and Scott will put our air conditioners in tomorrow as I can't survive the weekend in that kind of heat.

Still trying to find a balance with the new fentanyl patch dose, dilaudid, and constipation. Haven't hit the right balance yet.

Lymphedema in my arm is worse in the heat.

Two more arm radiation appointments. I think I am getting more energy, but it is slow work.I have much to be thankful for, including a wonderful care team, friends, family, and colleagues. Thank you everyone!

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!

Turning point

I decided a couple of hours ago that today will be a turning point. Nowhere to go but up, right?

Eddie and I had a good talk today, good for both of us.

Friends continue their outpouring of support. Thank you for that.

The radiology tech, Tim, was a complete sweetheart and met me both yesterday and today to change my wound dressing. I really couldn't ask for a better support and care team.

Love to everyone!

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.

Doing better so far today

I ended up with a lot of nausea on Friday -this was after taking the standard dose of 3 250-mg pills each day and one dose of Flagyl. The nausea lasted into Saturday morning. I took Zofran Friday night and Saturday morning. I am happy to report that since I stopped the antibiotic on Thursday, I finally don't have nausea.

But I do have pain in my shoulders and my right forearm. Dad finally talked me into taking Dilaudid so I took some about 1am and again at 7am. I will take that instead of Tylenol and will alternate that with Ibuprofen. I thnk the pain is less and allowed me to sleep better.

I do think the infection in my left arm (not armpit) is less. For now I will just use the antibiotic/silver powder and silver dressing, while I do WBR.

So my plan is to do the WBR, take the pain meds and the anti-nausea meds and try to keep the infection from getting worse.

Dad and Scott are building the deck in back. My friend will come over and help tomorrow. I think the rest of the summer will be spent trying to rest. And work on the back yard. Maybe later in the summer, I will be able to travel more..

Thank you all form the birthday wishes!

Thank You So Much My Friends

My friend Mary and her husband David have been touring around in Spain and Portugal and they visited the Fatima pilgrimage site today. Mary dedicated a burning candle to me and also found wax boobs that will be, I presume, burned by a priest at some point, which is a burning of a diseased body part. Here is the link to their post on the subject:

Fatima

http://foodvengeance.blogspot.com/2011/06/ex-catholic-on-pilgrimage-to-fatima.html?showComment=1309301703487#c3497426204117932192

Updates on Wounds and Medical Appointments This Week

Let's start with the wounds in the armpit: I think the skin has continued to grow in (slowly but surely) in the main area. There are four other spots that aren't healing but aren't growing either. I suspect that there's cancer, but now that we've lessened the tumor load in my body, maybe my immune system and the other systemic treatments (Tykerb/Herceptin) can begin shrinking them.

The chest wound, where the tumor was removed, is draining fluids. But already, since Thursday, the drainage is less. I am wearing a JP drain, but expect to get that removed on Wednesday as there was only 15ml of drainage in 14 hours.

In place of the chest tumor, there are incisions - and stitches - about 2-3 inches long at the top and at the bottom where the surgeon was able to close the opening. He also put in a "stent" which I thought meant something like a "shunt" - a metal tube or something. But what it is is a wad of gauze that is pressing down on the wire mesh and the skin graft in the hopes that the skin graft takes. He expects that about 80% of the graft will take. The stent won't be removed until July 5th or so. I am on antibiotics for 10 days so hopefully an infection won't set in. Already the drainage there is less although there had been a lot of blood and fluid there for a few days. I changed it last night and I think I found the right combination of getting the right amount of gauze/ABD sponges to catch the drainage and keeping the areal coverage of it relatively small. I already think it sticks out less then uniboob, so it's a huge huge improvement.

On occasion, my right thigh, where he took the skin graft, hurts, but that's only when I've been immobile for awhile. If I keep moving, it stops bothering me. I should change that dressing as it is already sticking. I might get brave enough later to replace it with the transparent suresite dressing - which doesn't stick when there's fluid.

As for the lymphedema in my left arm - I don't think it's getting any better. It's hard to wrap up high enough on the left arm to shrink the largest fluid retention - nearest the armpit - and sometimes, I don't wrap tight enough. I am already tired of the damn thing, but it is what it is.

I have 13 medical appointments this coming week. Five for radiation, two with wound care, two with physical therapy, one with the surgeon, an appointment for Eddie, one with acupuncture, and then an infusion with Herceptin/Zometa.

But given all of that, I feel really hopeful. Even my surgeon yesterday said that I am making him a believer in alternative and immunotherapies. As far as we know all the gross/large tumors are out of my body. Now on to the business of keeping anything else from growing.

Thank you all again for your continued love and support!

On the road to recovery

The surgery to remove the chest tumor was yesterday.

The good news is that the surgeon said there was a "plane" of good tissue under the tumor and that cancer was not in the sternum. The other good news is that he was able to pull enough good tissue (I think the TRAM flap from reconstruction) so that the skin graft is only about 3cm in circumference. He thought it would be a lot bigger.

So good news all around. However, the nausea stayed with me until partway through the night. It is a lot better now. Not sure if I will be discharged today or tomorrow although right now, I am already readynto go home. Sometimes talking to strangers about my problems and history is just too exhausting.

Hmm, I think I will change my own dressing in my armpit. The nurses here are busy. I will finish my jello first and then get it all ready.

Thank you all again for your continued support!

Can't Be Positive All the Time - Although It Is My Preferred State of Being

People who read my blog regularly would generally agree that I am a positive person - mostly looking at the bright side of things.

A person that I don't know (but whose brother I do know and really like and respect) commented on my first post yesterday (about my anxiety and worry) to "stay positive". I will admit that it hit a raw nerve because I was, in fact, not feeling positive yesterday. I realized, though, that she was well-intended, so I can't get too angry or upset at her comment.

I can, however, respond in a way to help others reading my blog about how to respond to my posts that are less than positive.

Barbara Ehrenreich (who wrote "Nickle and Dimed" recently released a book called "Bright-Sided: How the Relentless of Positive Thinking has Undermined America". I will admit to not reading the book, but perhaps I shall. I think, though, that perhaps she has a point. This relentless to "stay positive" all the time forces people like me to mask any negative feelings we might be having - to put on a happy face to make it easier for other people and ignore our own needs.

Without having read the book, my guess is that Ehrenreich might be saying the same thing - as a society, we walk around in public as if everything is okay, when in fact it isn't and that forces our society not to address some really pressing needs or even to ask for help when we need it. It also forces us to pretend as if there is nothing wrong.

My acupuncturist, though, has long told me that I should, in fact, express my emotions whenever I have them and not bottle them up inside. Three years ago, I broke a bunch of plates (and had acupuncture and reiki) to release a lot of deep-seated and long-held anger - from hurts long long ago. I had repressed that anger and needed to let it out. Repressing it leads to dis-ease because you are not acknowledging it and pretending that all is well when in fact it isn't.

So, since then, I've become better at expressing my negative feelings when I have them. I don't want to hold on to them. They need to be released. Writing about them helps me release them so that they don't stay in my body. I need to express those negative feelings. Once I release it and then figure out ways to address whatever is making me anxious or worry or depressed, I feel more in control of the situation. And, that makes me feel better.

Your task, as readers of my blog, is not to try to fix me. Rather, it is to continue to offer support as you all do, and to acknowledge that there will be days when I am not my usual, sunny, positive self. And, that's okay. I can't always pretend that all is well with me all the time. In fact, there is a lot that is kinda crappy. I don't tend to dwell on it because it is what it is. I do as much as I can - and get the help of my medical care providers - to make whatever it is better. But it's a slow process.

So, continue to send me your positive energy, prayers, blessings, etc., because it does help. But please please, don't tell me how to feel or give me commands (i.e., "stay positive"). Everyone, and I mean, EVERYONE, feels negative feelings. Don't repress them. Express them. Get them out of your system and don't hold on to it. Once you do, it's easier to get back into a positive state of thinking. I know, myself, that I have a choice about how I feel. I generally choose to be happy. But there are times that I am worried or anxious or down. I am entitled to those feelings when they happen and I will continue to express those feelings.

I know the power of positive thinking. I have said before and will say again, that I don't believe cancer will survive long in a happy body. You other cancer survivors, you know how I feel; just acknowledging that you do understand helps me in a lot of ways. I appreciate that support and understanding, in the good days and the bad. I LIKE being happy and will do whatever I can to turn around the negative feelings, but I will have those, too. I have strategies to turn those negative feelings around quicker. I do that because it helps me, not because it helps you. I'd rather be happy. But there are times when I'm not and you, as readers, have to accept that, too.

Thank you for your continued support! Keep sending the happy vibes! : )

UPDATE: Much better now

I called my surgeon's office and alerted them about the fact that the chest tumor is bleeding, so I went in to the lab and had blood drawn - and a "type and cross", which needs to be done if you need a transfusion. They double-check your blood type and other antibodies so they can match your blood type to their available blood. So, now I feel better that if I need blood during surgery, they have the necessary information to do so.

I also had a long conversation with the pre-op nurse today and asked about how to clean with Hibiclens. I feel more prepared now about what to do prior to surgery on Thursday.

I also talked to a nurse at my oncologist's office about the diarrhea since it was worse today and extended into the afternoon. I am now taking Imodium and am on a diet that is only easily digestible foods - no fresh fruit and veggies, etc.

I saw the physical therapist, too, today. My arm is about the same as it was the day after I started the compression wrap. I have a couple new strategies for wrapping. She did note, however, that the area at the top and under the arm (nearest the armpit) was 2cm bigger and seemed warm. That indicates inflammation, which might either be my immune system fighting an infection - or like the "inflammatory flare" I had after the Herminator cell infusion last year. She did say that if it was an infection there, I'd feel more pain, which I don't. So, we're just going to watch it.

I should also note that the area around the chest tumor is more red - and some spots are darker. The physical therapist also saw that it seemed redder. So, there might be inflammation there as well. I noted that it also seems bigger so I tend to think it's acting like the left armpit, which became more inflamed after the Herminator infusion.

I think both signs of inflammation are my body's attempt to fight the cancer with whatever Herminator cells I might have. I think the Tykerb is causing the inflammation. And, that's a good thing. I guess I think that it's my immune system fighting the cancer rather than a bacterial infection because I don't have a fever or feel otherwise sick.

I am feeling very tired even though I got about 7 hours sleep. Probably a combination of lack of sleep over the past week in combination with the diarrhea - lots of diarrhea can lead to fatigue.

I am drinking lots of fluids, though. I don't want to get dehydrated on top of everything else!

One of my grad research assistants stopped by today and brought lunch. We thought we might go out to lunch but with my reluctance to go out in public, she agreed to come over. I gave her some work to do for me.

I made my phone calls except that I couldn't get through to the disability insurance company "We apologize for the wait. We are currently experiencing a high volume of calls." blah blah blah. I was on hold with them twice for 15-20 min before I gave up.

I am hoping I get a good night's sleep tonight and that the Imodium helps because I really want to take Eddie and his cousin to a water park that just opened up north of here. I think it's important to take him out and about. My brother will go with me to help drive and to go into the water with the kids as I am unable to because of the wounds.

I feel much better now. Did things to relieve my anxiety and worry; I have my grad student working on some stuff for me (Thanks, R.!); am doing something about the diarrhea. Thank you for letting me complain. I feel better now then I did. And, thanks, R., for bringing lunch by!

The Difference Between Frodo and Me

I don't know how many times I've read "The Lord of the Rings". I always imagined myself as Frodo - the little person who somehow does what the great people can't do and beat the bad guy. I think that's why I like the Harry Potter series, too.

Yesterday evening, after the yard work party, we watched the third Lord of the Rings movie as it was on TV - The Return of the King. Then, I posted on Facebook that I always imagined myself as Frodo and that cancer was "The Ring of Doom". I visualized throwing the damn ring (i.e, cancer) into Mount Doom and melting away.

But in the middle of the night when I couldn't sleep (some achey arms - too tight a wrap on the left arm and a tight right shoulder; plus some worry as I thought I found another nodule in my left armpit which I now think might be scar tissue), I got to thinking that there was one important difference between Frodo and me.

At the end of the story, he goes on the ship that takes him to the sea. He finds that he can't enjoy the Shire anymore because of all his hurts and struggles. I thought about the scene where the four hobbits, who fought in the war, were in the pub watching all their fellow hobbits laughing without a care in the world. They exchange knowing glances that these other hobbits are still innocent of the evil that exists in the world.

The big difference is, though, that even though I've gone through a lot, like Frodo, I would have to stay that I've rediscovered the joy of Shire - that innocence and love of life that children have. I used to think, in my 20s and 30s, that I needed to put away childish things, like innocence and be an "adult". But then, traveling around with good friend of mine in New Mexico, P., I'd watch her giggle with delight as Mesa Verde or Acoma Pueblo and I realized that why is it that we need to put away childish things? Why can't I take joy and giggle and see something I've not seen before? Why can't I color mandalas or create mosaics? Play with color and design? It's fun! Why not have fun?

So, that's the big difference. Frodo couldn't enjoy his world, but I think there is much to do, much to enjoy, much to giggle about yet. I'd rather dwell on the sweet smelling roses then about the evil. As I said before, if we all concentrated on what's good, maybe the world would be a better place. Let's all continue being children, okay?

Thank you again to everyone!

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.

Today is Starting on a Good Note

First, I saw the physical therapist. In general, except for the area closest to my armpit, the lymphedema was vastly improved in just one day. One area was 3.5 cm smaller, right above the elbow. The elbow was about 1.5 cm smaller. The area nearer my armpit and under the arm may take more active treatment - it is a bit harder, which indicates that the lymph fluid may have created fibroids which are harder to break down. Gentle massage to break up the fibroids will help.

Then, I saw the neurosurgeon. I asked him what symptoms I should worry about if there were brain tumors growing and his answer "headache and nausea - the symptoms you had before surgery". And, I have neither. As for the increased numbness, he saw that the swelling in my brain will fluctuate over the next weeks and that it often takes people 6 weeks to fully recover. It's only been two. So, I won't worry about the numbness just yet. He also says my jitteriness and high heart rate may be related to withdrawing from steroids. As for the lack of ear wax, when I said that the anti-seizure medication causes dry mouth and also nose irritation and dryness, I said maybe lack of ear wax could be related to that and his answer was "that's true theoretically; but I've never heard of a connection".

So, I guess I won't worry about growing brain tumors. I start Tykerb tomorrow, I think.

I'll see the general surgeon later today, after a couple of visits from friends and colleagues.

Joanna suggested maybe we biopsy the two suspicious areas. I'll mention it to him.

I was also able to get a decent night's sleep. I slept from 10-11, then 11-1am, then took an Ambien and slept until 4am, then 4-5, then 5-6. So, 8 hours.

All in all, a good start to the day. Thank you everyone!

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!

Moved from Being Sad to Being Pissed

I was sad after my last post.

But within about an hour, I became pissed off. I think Dr. K wanted to scare me into more aggressive treatments sooner. Well, it worked.

Now, I feel resolute - like I will have energy for the next phase of treatment.

I already made an appointment with the radiation oncologist for next week. I hope to do the treatments beginning June 26 and ending July 15. That way, I can go to the coast for a week knowing that I've done what I can to kill whatever cancer cells are left in the brain.

I will also start Tykerb sometime soon.

I am, however, reserving judgment on the chemotherapy.

Thank you to everyone who continues to think about me, read my blog, pray for me, etc. It surely helps!

And, now, back to regaining my strength.

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!

Surgery Tomorrow and Other News of Today

I was actually quite busy today. I went into my office to pick up some files - I needed to contact some people about various things I said I would do this summer and either notify them I would be late or I would just not do them. But with over 3,000 emails in my inbox and not remembering when or who I was in contact with, I needed my hard copy sheets so I could follow up with them.

I also made a few phone calls about things like summer salary, disability, FMLA, insurance, etc. I need to figure out what my options are, how much to save, etc. I have a post about that, so I won't go into it here.

I also had to have my blood drawn and go see the wound care nurse. I forgot to mention that there are two smaller areas where the skin is almost all the way grown over near the bottom. In other words, almost all healed. The other larger area, up under the pit, is now about 6x3.5cm (she thought it was 5x4cm last week, but it's in an area that's hard to measure; seven days ago, it was 8x6cm. So, it's growing in nicely. It's not draining as much so less dressings. Maybe another 2-3 weeks.

I went with dad to pick Ed up from school and we ran an errand before we came home.

My colleague, M, and her husband and daughter stopped by and brought dinner and visited. It was a good visit. Thanks, M, for dinner!

I didn't take a steroid today. I took one yesterday and felt like my heart was racy and I was shaky all day. Yuck! I hardly have any numbness in my fingers, so I figure that's a good sign that there isn't much swelling. No head or nausea, either. I'll let the surgeon know that I didn't take steroids . . . I don't think it will make much of a difference. I hope that I won't have to take it afterwards, but if I do, maybe I can talk them into a smaller dose.

It seems a bit surreal to me that I head to surgery in less than 12 hours. I mean, they're opening up my head. I have reminded myself that the surgeon has already done this to me once and I was okay. This surgery is less risky and will only be 2 hours rather than 3. So, I should be okay. The radiation oncologist was surprised that I was having another surgery - this whole idea about standard of care in situations of 2 or more tumors in the brain usually means that there are cancer cells running around all over in there, so the treatment is radiation. If there is just one tumor, then surgery and radiation. When I told her that the surgeon said that I was now in the latter category and wanted to do the surgery, she said that that wasn't maybe technically correct and then she asked if my own oncologist knew what I had decided. I told her he was on vacation and didn't know. I think she's a little surprised that I would just make a decision without consulting and talking to a few docs - I might've passed the idea by Dr. K but I knew he was on vacation. So, I made the best decision I could at the time. As far as I'm concerned, the sooner we can get the thing out, the better. Then I can get to healing elsewhere instead of waiting to see if radiation worked.

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.