The Good, The Bad and The Odds and Ends

There's a bunch of good:

• I'm posting
• I'm 3/4s the way thru the chemo part of treatment (and chemo is the hardest part of treatment)
• I've lost 5 pounds each chemo session
• I'm surrounded by wonderful friends and the best family in the entire world

The Bad is :

• chemo including herceptin is exhausting. I do feel physically better this time then the first two, but I also feel exhausted. I take a shower and need to rest. I vacuum half the rug and need to lie down. I keep thinking I'll feel better and better each day but I feel the same. I want to be better, I want to be well. I see the doctor tomorrow and will talk to him about how I'm feeling.
• I have gained back the 5 pounds I lose in the days after chemo in the week before the next session because I am depressed at the thought of going through it again

The other is that my life is pretty dang dull these days. I am sick of knitting, I don't have the energy to quilt or read a book. I can listen to books on tape or watch TV but both of those get old quick.

Luckily I have had gone to work after chemo sessions 1 and 2. I like work. It gives me something to do other then feel sorry for myself and every once in a blue moon lets me meet a memorably rude and nasty customer. And memorably rude/nasty customers stand out because they are so few and far between. And It gives me a story to tell which enlivens my dull routine. Of course the names and identities of the obnoxious are not mentioned to protect the guilty (and me since this is posted on the Internet).

I won't go in to the details of the latest, it's boring. Suffice it to say she was rude, demanding and obviously felt entitled. She did not understand that she could have accomplished the what she wanted by asking instead of demanding. The store believes in customer service, so do I. I provide service to the nice and nasty alike. I would rather do it for someone who is polite but it is my job to do it no matter what. Her behaviour has a small impact on me, I get irritated, I fuss and tell the story to others. Then I let it go and just chalk it up to some people are really weird.

Her behaviour had a minimal impact on me, it was a blip in my day, a story to share. It must have a huge impact on her and the people close to her. How do her co-workers deal with her, her friends, her family? She may not treat them like that, but she treated me that way in front of a friend. If a friend treated other people that way in front of me, it would have a huge impact on our friendship.

She, as we all do, lives with the consequences of her actions. I think her actions close her off and make her a sad, pathetic woman. I truly feel sorry for her.

Fake Blue Wig

Tuesday I started wearing chemo caps. When I brushed my hair that morning it was sparse and patchy. I couldn't go out like that and I had chemo II scheduled for 11 a.m. So I wore the first chemo cap I made. It looked a lot like the one above but it was all blue instead of the blue and pink above. I called it my fake blue wig. I liked it so did the adored oncologist. I do like my own hair better.

The timeline is my hair started falling out noticeable on 8/24/08, was noticeably sparse and hat worthy on the 9/2/08 and I chopped of the remaining wisps just an hour ago. I couldn't stand it, there was just abut a third to a fourth of my hair left and it just got in the way. So I chopped it off. It feels good but looks weird. Tomorrow I call the hair dresser and get a buzz cut. A buzz cut with pinky scalpy patches. Boy won't I look good.

My Scalp Hurts

Isn't it interesting that a scalp hurts when your hair is falling out. I mean isn't it enough to lose your hair, does it have to hurt while you lose it?

It's been falling out for about a week now. I can't stop myself from brushing my hair or running my hands through it and seeing how much hair comes out each time. And each time way too much comes out. No bald spots yet. Just a score scalp.

Other then that life is going well, at least well for a girl who misses her hair and is depressed.

Things willget better. I dare say once the hair is gone I'll be ready to move on.

She's Alive (insert evil laugh here)

This first chemo session sucked. It sucked big time. It sucked super big time. You get the picture.

I spent most of the last 9 days feeling to sick and tired to even sit up. And much to tired to blog, read, knit or even watch tv. I was of course a lot of fun to be around. Everyone knows when you feel sick and tired you have a wonderful and pleasing personality and you are a pleasure and a joy to be around. And you are the exact opposite of crabby.

I Think She is Right

Cat transmutation:
I am sure Good Looking is right, this is all an experiment to turn me into a cat. And it seems to be working. I spend most of the time sleeping either in bed or on the sofa.

I say it is good news:
The good thing is I don't often have the interest or energy to eat. Food tastes funny, coffee tastes funny and I'm just not hungry, at last not usually. I did come home from work yesterday, after having a glass or two of milk on Saturday and a half a corn muffin, a scone and 2 glasses of milk on Sunday, so hungry that I could barely make it the kitchen before I slaughtered a tomato sandwich. Good looking that was your tomato and boy was it good.

The good thing about that is I am losing weight. I know it's not very smart right now to eat so little, but it sure feels good to get on the scale and see the amount drop daily. It sure feels good to put on the shirt I wore last week and see it loser. I think right now this is just enjoying one of the benefits of a tough situation. I'll see if it happens after the next session and see if a short term pleasure starts to turn into something closer to stupid.

Hair today:
Generally I like my hair, but there I've always wanted to tweak it. Sometimes I wanted auburn hair, sometimes I've wanted it to be long and curly. I've always wanted it to be fuller, thicker and have more body. No matter what I've always loved the fact that it has always been silky. My hubby loves to run his hands through it, so do I. It feels -- well it felt wonderful. Now it's just so so silky. It feels drier and wrong. I guess it is getting ready to leave. I'll miss it.

And I say we all take a poll on how we want it to come back. Long and blond. Short, spiky and red. Buzz cut. Braids.

Send ideas.

I see one of the chemo doctors tomorrow, lets hope he has energy ideas.

I Think She is Right

Chemo Bites

The Adored Oncologist did say I would be beat the 2nd thought the 4th days after Chemo and so far I would have to say he is right. Chemo was Tuesday, Wednesday and Thursday I was tired. Yesterday I was just plainly exhausted. I slept from 9:00 in the evening till 3 the next afternoon. At three I ate a bit, and napped some more. And then spent the rest of the day napping.

Today I woke up at 10:30 and have had a least the energy to sit up and play on my puter. Hope I feel more awake soon since I have to work tomorrow.

Chemo may suck, but it is better then cancer.

Chemo 1

Monday was my birthday. I celebrated by unpacking from vacation and thinking about chemo.

Tuesday was chemo 1. Al brought me to the Oncologis's office at 9:00. Naturally, the first person we were scheduled to see was the financial manager. Speaking of which we are very lucky that we have good insurance. That really hit home once we picked up the latest prescription. I need to give my self a shot of Neuprogn once a day for 5 days after each chemo. The medicine costs over $3,000 for probably 2 sessions. Over $3,000. Luckily we have reached the cap for our out of pocket expenses so we got it for free.

Anyway Al and I got there at 9:00, saw the finance manager and trundled upstairs to see the Physician Assistant. When he finished explaining everything and writing even more prescriptions, (an antibiotic in case I get a fever over 100.4 and and antinaseau medication). Finally we went to see the nurse. She is young and sweet and explained everything in great detail. Too much detail considering I've talked to the oncologist, the physician assistant and read books and web sites for detailed information. But she was doing her job and did it well. And she was sweet.

Al left about 10:30. Then nurse drew blood (to make sure the blood levels were appropriate) and set up the IV. She puts lots of stuff in me, the chemo meds, the Herceptin meds, meds to minimise side effects and only the good lord knows what else. It took until 3:30 until they were done. I listened to Alan Alda's biography which I had on my Ipod. I knit, I wandered to the bathroom, training a pole with chemo was very bored. Al came back around 2:30 and entertained me. It was a long day. But worth it.

Dear God What Have We Done

We love Myrtle beach and have been looking (off and on, though mostly off) for years for a vacation home down there. This year we found it. It is tiny and on a postage stamp sized lot. We can almost afford it (if we never buy anything unneccessary ever again).

This is the link to the housing development. http://myrtlebeachismybeach.com/Cottages.aspx
This is the link to the local shopping http://www.marketcommonmb.com/about.html

This is a couple of pictures of a cottage for sale.http://activerain.com/blogsview/225961/The-Cottages-on-Farrow

I have to clean this house or the guys will be very cross. Albert is having friends over soon.

I Love Myrtle Beach

Unfortunately vacation is almost done. We will be heading home Saturday morning. I would rather stay here.

The beach is beautiful and so is the pool usually. Today was bad because so kid pooped in the pool. Ugh.

Radiation is Done

And I am dancing.

If any one wants to know I suggest the 5 day Mammosite process over the normal radiation process any day. It is much easier and pleasanter. In addition the folks at St. Agnes were wonderful. They were kind, considerate and skillful. They did their jobs well and kept me happy and comfortable. In fact the whole process was almost, but not quite, fun.

Thursday we fit in (between the last 2 radiation treatments) an appointment with the adored Medical Oncologist. He set up the date for the first chemo, told me the medication I needed and the likely outcome (my long and healthy life.) He also told me I would have to learn to inject a drug into myself. Ouch. Between learning how to inject myself and how to understand Pathology reports I figure I can become either a doctor or a druggie.

What the adore Oncologist did not tell me was that chemo, which starts the day after my birthday, is a five hour process. Dear God almighty, five hours. A five hour treatment might be nice if it were at a spa, but 5 hours of sitting and having medicine pumped into my veins sounds very dull. Ugh. But I guess five hours of dull is better then the alternative.

In the vein of medical stuff, there have only been two times when a doctor told me during a medical procedure I would feel a little pressure. One was ten years ago just before a bone marrow biopsy and the second was Thursday afternoon just before the doctor pulled the radiation balloon out of my boob. Doctor's lie. I didn't feel pressure with either one, both hurt--a lot. Which brings me back to the well known fact that all Doctors are pigs-even adored doctors.

Vacation starts tomorrow. I will have much fun at the beach . I will bake in the sun and miss you all.

Chasing the Physicist

The other day I wrote about the radiation guy (from now on to be known as the physicist) coming in after each procedure with a Geiger counter verifying that all radioactive material is safely back in R2D2. Over the weekend I started to wonder what he would do if the Geiger counter showed stray radiation. Would he back out, slam the door and leave me to cook or would he brave the radiation and come save me? The more time passed the more curious I became. So I asked him. He laughed and said there were safety devices built into R2D2 and he would use them to make sure I was OK.

Life is good.

The good news is I have 4 treatments down, 6 more to go.

The even better news is I am making progress and feeling good.

The best news is I love my friends and Ruth I love, adore and cherish my retirement album. I will call you soon.

Radiiation

This kind of radiation does not suck. The techs are nice. The doctors are nice and treatment goes quickly.

The process starts with a CAT Scan of my breast which makes sure the balloon is still nicely inflated and that the size and position of the balloon is the same. After that we all (cast of many) troop to the radiation room. I lay down on the table and the nurse hooks me up to an R2D2 type machine. The nurse leaves the room and shuts this huge, iron, bank vault like door. On the outside of the door is a huge yellow and red sign saying something like - Caution High Radiation Levels inside.

After the nurse leaves the machine whirs and an unradiated seed is inserted. They send in the fake one first to make sure the line isn't blocked. After that the machine sends in the seed of radiation. It stays inside me for 12 minutes then is taken out and put back in R2D2.

Finally the person, doctor, scientist (don't know which) responsible for running the machine comes in with a Geiger counter to make sure no radiation is in the room. After determining no stray radiation is hanging out with me, the rest of the group, techs, nurses, doctor and as far as I know random strangers off the street come in, unhook me and send me home.

I come back and do the same thing 6 hours later.

One day down, four more days to go.

Close Margins

The adored Radiation Oncologist called. No cancer in the lymph nodes and a close margin in one area. A close margin is the indication of a possibility of a tiny amount of cancer in the rim of the tissue taken out of the breast. All in all that is good news. Having the margins been totally clear of cancer would have make me feel a bit better, but it does not appear to make a difference in the possibility of cancer coming back.

I did some research on the Internet, and a study published in August of 2006 shows that a recurrence or cancer was just as unlikely no matter the status of the margins, so long as the patient received radiation. Life is good.

Lymph Vs. Nympho

Odds and Ends

1. Breasts should not have pleat shaped folds in them. The doctor made it clear that due to the 2 sites of cancer and the distance between them my breast would look strange, but I never thought it would have a pleat in it. The pleat bugs me a lot. I see plastic surgery in my future.



2. Setting up for radiation is supposed to be done tomorrow morning. However it can't start until the pathology report shows the margins are clean and no nodes are involved. The stupid adored oncologist won't know what he needs to know if he doesn't get the reports. They are late. I hate waiting.



3. Physically I feel pretty good. I've done laundry, dishes, tiding and vacuuming. Al's happy.



4. While I am not depressed I am anxious and on edge. Eating tones those feelings down but makes me depressed and angry.



5. I'm writing this entry because I had ice cream and pecans for lunch and still want to eat.



6. Writing helps.



7. I sometimes think of things other then cancer.



8. For example I adore Ruth, Kathie and Nancy especially. I adore everyone who has posted a comment or sent a card. I adore everyone who has said a prayer or sent a kind thought my way. I adore the all the doctors and nurses who have listened, offered advice, given me a hug or a warm handshake. I especially adore the nurse Sandy who made me laugh the morning of my surgery. I adore my in-laws who are two of the best people ever made.



9. Oh that was thinking of things related to cancer. Humph.



10. I hate waiting.



11. I pray no lymph (first I typed nympo -which did give me a laugh, then I changed it to nymph and only realize that was also wrong when I was telling Al what I did) nodes are involved and the stupid ugly margins are clean.



12. I need the names of good plastic surgeons. Those of you who want to fess up to plastic surgery do it now, with the name of the surgeon. Those of you that don't want to fess up tell me your sister or friend had the surgery. But only tell me if the surgeon was great.



13. I did meet a plastic surgeon at St. Agnes. I didn't really like her. Just a gut feeling.



14. I need strength to get through this.



15. I adore each of you. Please pass some love.

Radiantly Awake

Yup, that's me. I'm radiant and awake and not depressed. Life is good.

Yesterday I slept 18 hours out of 24, which was an hour or two more then the day before. Today I may only sleep about 12 hours. I am feeling better and better every day. I'm even starting to do some chores, which just thrills Al.

My left boob (wasn't there a book about My Left Foot--maybe I can get a ghost writer to write about My Left Boob-- Maybe not) is a little misshapen. It looks like someone took a bite out of it. In stead of a nice all over smooth curve, it looks a little like a lower case letter d. The part near the nipple is almost straight and then it rises in a nice swell. Oh well, better misshapen then dead. And I can always see a plastic surgeon when things settle down.

I think what bothers me more then the shape and the bruising is the rubber tube and port sticking out of the side of it. It may be necessary for mammosite radiation therapy, but it is just plain weird.

Speaking of that, I have pretty much decided to go with mammosite radiation instead of regular radiation therapy, unless of course some lymph nodes are involved. Part of the reason is I hated radiation ten years ago. I hated it because some of the techs treated me like an object in stead of a person . Their behaviour clearly stated that they were in the process of saving my life so they didn't have to care about my feelings. In fact they made it clear that no matter what I said, they didn't care about my feelings. When they make that attitude clear 5 days a week for 7 weeks the impact is overwhelming.

Of course I am a much more assertive person now then I was ten years ago, but I don't want to go through that process again if there is an acceptable alternative. And there is. Mammosite radiation is an acceptable alternative so long as I keep up with mammograms and stupid doctor visits (the visit is stupid, not the doctor). Mammosite radiation has not been around long enough to know whether or not cancer is more likely to reoccur with mammosite compared to regular radiation. But if it does, recurrences are treatable. And it won't come back. After all I've had cancer twice so far and that is enough for a life time. Right?

Sleep, Sleep and More Sleep

Surgery went well, according to the Doctor. I wouldn't know. I wasn't awake.

Al and I arrived at the hospital around 8 yesterday morning. It was a very long morning involing checking in one building, walking to a second to have the sentinnel node biopsy started and walking back to the first to get ready for surgery.

The start of the sentinnel node surgery was gross. The nurse injected blue radioactive dye in to my breast, four shots around the nipple. They hurt. Ugh, ugh, ugh. Then she had me massage my breast for 5 minutes in order to make sure the dye was sent to the appropriate nodes. It would have been a lot more fun if Al had done the massage. I didn't even suggest it because the idea seemed just to weird . The last step was having pictures that tracked the dye and the nodes that sucked up the dye by lying down while a machine, a lot like a CAT scan tracked tracked and took pictures of the process. After that the nurse (who I loved-she was kind and funny) Al and I walked (I was in my jeans and a hospital johnny) from Nuclear medicine back to Ambulatory care. We made a cute parade.`

Al's folks, Albert and Ben were waiting for us in the ambulatory care waiting room. It was wonderful to see them. The boys wanted to be there and Al's folks wanted to do all they could to help us out. I am amazing lucky. I have a wonderful family and my in-laws are the best in the world.
Before I knew it surgery was over and I was ready to come home. I slept most of yesterday and most of today too. I've been awake for two whole hours now. A new record.

Keep Reading

The roller coaster ride never ends. I thought everything was set. Until we decided to see a second radiation oncologist for an opinion on me and mammosite radiation. I made an appointment with the radiation oncologist I used for NHL, a wonderful, fantastic woman. While I am really glad I did, it made my decision about treatment much harder.

Of course I had to work my way through the multi-level gate keepers before I saw the Doctor. Receptionist, aide, nurse and finally doctor. All of them were kind, competent and professional. I especially liked the nurse. She took the time to ask about both my emotional and physical states. When I told her I was really depressed this time, she said that was common. She cited a study which showed that patients diagnosed with cancer the second time are much more likely to be depressed then they were the first time. That knowledge really helped. I couldn't really understand why I was so depressed. I was afraid I would die the first time. This time I don't have that fear at all. I just don't want to go through treatment again. The good news is I am seeing a therapist tonight to start to understand and deal with my depression.

The radiation oncologist also had concerns for me with with mammosite radiation. She stated that the original study was based on a very broad range of patients, many of them may not have actually needed radiation. Of course the inclusion of those patients may skew the data. So she has concerns that the data showing no difference in three year recurrence rates between mammosite radiation on whole breast radiation may be overstated for women like me.

She is also concerned that the mammosite evidence does not specifically address Her2/Neu positive cancers which is an aggressive cancer. She did say that those concerns were somewhat alleviated because of the ability of Herceptin to treat aggressive forms of cancer.

She is also concerned that I had a second smaller tumor near the first tumor and that the surgeon stated that he may need to take so much tissue that my breast won't match after surgery. A larger cavity makes it more difficult to treat the cancer.

Finally she said she tends to be very conservative and the other doctor is a bit less so. Those differences tend to mostly be a matter of style.

Finally she said if the cancer did come back I would need a mastectomy but another cancer would not necessarily be a death sentence.

Right now I don 't know what I am going to do. Al and I need time to think and to talk about it. The idea of 5 days of radiation compared to 33 days is appealing, very appealing. But at the same time I don't want to go though this whole process again.

On a different note, for those of you who get this far, Al and I made a pledge to have sex every night until surgery. We started talking about it after reading an article about a couple from Baltimore who committed to having sex every night for 101 night and wrote a book about it. I was the one who suggest it to Al. It was to be his gift for being so wonderful and supportive. Surprisingly I am finding it to be a gift to me too.

Cancer is a Pig

Today was another wonderful day of visiting doctors and talking to them on the phone. First thing in the morning Al and I met with the radiation oncologist. I like the oncologist. He is funny, knowledgeable and as far as I can tell he is very good. I like his enough to make him my adored radiation oncologist. (I'm not going to tell him that after a treatment or two, when I am sick of the process, he may well become my stupid yet adored radiation oncologist.)

We talked about mammosite radiation (radiation targeted directly to the tumor site). It's benefits are fewer side effects and a much shorter course of treatment. I'm all for it. I do need a good surgical outcome -- clean tumor margins and clear lymph nodes. I haven't a clue what the alternate types of radiation are and I sure hope I never find out.

He also worked on setting up the start date for radiation if all goes well. What was interesting was the scheduler put him on hold. I truly can't imagine an analyst at my old job putting an executive on hold and surviving unscathed.

In the afternoon I had my pre-op physical. It went well. I am a healthy girl. Except for cancer.

Early evening the surgeon called with the results of the 2nd biopsy. The smaller lump is also cancer. I hate cancer. Cancer is a pig. It is a stupid pig, an ugly pig, a no good, worthless, pig shaped pig. It is also a worthless, scum sucking dog. You all get the picture.

The fact that it's cancer doesn't change much. He can still do a lumpectomy (he did say I might not be evenly matched after surgery). Cancer is still a pig and we still hate cancer.

The surgeon is also adored, except for the fact that he does not want hand knit socks. What is the matter with him. It is wrong not to want hand knit socks. I even think you can be arrested for not wanting hand knit socks. Even with this major character flaw I still adore him.

Cancer --- blah, blah, blah

This dog belongs in jail. He is a pain in the butt, but he is loved and loving.

I finished my second pair of socks. They are beautiful and wonderful and I did a much better job on the second pair then the first. I don't have the energy to find the camera and take a picture of them. Oh well, one of these days.

Things are falling into place on the stupid breast cancer front. Tomorrow I see the radiation oncologist, to discuss the protocol for post surgery radiation. I adore him and revere his scheduler because after talking to him she changed my appointment from July 24th to July 2nd. Waiting until the 24th would have almost killed me and it would have interfered with vacation plans. And the good lord knows I need my vacation. Luckily I don't mind begging, cajoling and lavishing praise on deserving people.

Tomorrow I also am going to have the pre-surgery physical. Humph. Why can't they just take my word for it that I am healthy - except for cancer that is.

All this cancer stuff is boring, even for me (or maybe especially for me) but that is really all I think of these days. I seem to be choosing cancer related books. I reading "Good Harbor" by Anita Diamant. It is the story of a friendship between two women on who has breast cancer. I loved her earlier book "Red Tent" I don't like this one nearly as much. I'm not sure it's because reading about a fictional character with breast cancer is too close to home or it's just not as good. The other book is Final Exit by Pauline Chen. I love it. It is a physicians reflections on the way doctors deal with death. I am sure there is some connection with my breast cancer and the books I'm reading. They make me a bit uncomfortable but they help me put my experience in perspective.

And just because I am reading Final Exam doesn't mean I think I am going to die. At least not for many, many years. The premise of the book is that honesty even when it is difficult, is almost always best. Most patients need to hear, need to know the truth.