Friday, October 31, 2008

Breast Cancer Diaries

This show was on last night. It was a video diary of a 36 year old young mother/journalist who had a 1 and 4 year old dealing with her breast cancer from diagnosis to bilateral mastectomy, through chemo and radiation. I missed the very first part so I don't know if she was BRAC1and/or TNBC but it was in her nodes. She went through hell as some of my breast-blog friends (did you guys see this?) are currently experiencing and to whom I wish all the best but seeing the effects, which were very brutal, was very upsetting and reminded me what I might be into. I know some of you have given me stories on how people went through chemo and 'things were not that bad' but that did not jive with what I saw. They didn't give names of the drugs she was on, which would have been helpful, though I could see the tell-tale Adriamycin dripping into her. Her 4 year old was an unbelievably articulate precious boy always trying to comfort his mother. During her first chemo session, the mom is on her cell phone trying to figure out why her son was rejected at some private kindergarten. They actually told her that her son was not up to their standards. I hope the administrator of that school gets plenty of feedback as I am sure her town was all watching this. But it is now 4 years later and she is alive and well as is the rest of her family and has an extreme appreciation for the preciousness of life.

But I am recovering from the 2nd surgery faster than the first. I am off of any extra drugs. I was able to take a 15 minute walk without feeling too dizzy and was able to check in with a neighbor who I thought was moving today but will be here at least another month. Brenda came by with some pizzelles, blood orange soda and, best of all, company and later a neighbor came over with dinner-a really good cherry, blue cheese salad, rice and a broccoli-cheese casserole along with bread. It was enough to feed a family of 10.

So on tap for my busy day-a shower which means I will see my new damage; voting as I don't think I will be up for standing in line forever Tuesday and I will be by myself then as Steve will be gone 16 h as an election inspector; taking a longer walk-it is warmer and sunny today; dish washing as noone seems to do it around here; dealing with trick -or -treaters as Naomi will be in Dexter at the store and Steve usually hangs out there unless I can get Josh to take her to his house-she is refusing to walk there as it is 1.5 miles away from the store. Karen will come over later.

Thursday, October 30, 2008

What keeps me up at night

Usually I have no trouble falling asleep but then I wake up around 2 or 3 am and my mind just covers the same tired territory over and over-unfair, unfair, unfair. For the past 2 months some of these thoughts have been focused on the terror of cancer and the whole series of what-ifs and why-mes but actually alot more time has been dedicated ( or wasted but I can't quite help myself) to how Naomi was cut from the volleyball team despite being one of the best players, being a senior, and us spending thousands of dollars on travel teams in the off-season. She sprained her ankle during try-out week after just completing one of they many 'skill tests' they needed to be graded on (the two mile run-she had the best time but I can see how that isn't that necessary in volleyball) They made her do the rest of the skill tests when she could barely walk much less jump. Obviously she didn't score too high despite for the last two years, she has had one of the highest scores. This new coach just showed her that her scores were lower than other players (some who were extremely weak players) so even if he kept her, she would be benched and I was thinking, what BS! Does he think these scores represent how she really is as a player? She had led her two travel teams to state championships! So unfair!

But the other day I ran into volleyball parent in the woods.  According to this parent, who has inside information, Naomi was dropped for her low grades even though she was one of the most talented players.

I am a survivor!!!

For now at least. So I had my surgery yesterday. This time everything was on time and there wasn't much waiting. For extra bonus, she finished up with me early and I came to life less than an hour after she started (versus 3.5 hours)and I seem to have much less after effects than I did last time.

The dual wire placement was a bitch though. One of the wires needed to be put close to my chest wall and it was hard stretching my breast/chest wall out between the plates they use to position it while they take multiple mammograms. I had to stay in this awkward position for almost a half hour. They try to insert as much lidocaine into my breast but they missed a major sector. When they put the wire guiding tool into this, it hurt like you would not believe-like a drill on an exposed dental nerve. Also one of the techs or nurse had to hold me closely into place had really funky breath that made me feel even sicker. They put these wires in so the surgeon knows where to begin and end her cutting as everything looks the same once she's inside. The microcalcifications only show up on x-ray.

The anaesthesiologist was cute and British (from Dorset like Tess of the D'urbervilles-a book that stresses again how life is not fair). I told him how his job was easy-just look up what they did last time.
Oh it doesn't work that way. Each time we have a different situation. For instance your blood pressure is way, way up.
They took it right before torturing me. It went down later. I am caffeinated this time though. Black coffee.
Now I was standing in line this morning for some myself at some fancy coffee place and the fellow in front of me was going on and on how he wanted frappa, cappa, carmel, whipped cream something or other and I thought to myself, how unmanly. Was your 'black' coffee anything like that?
No girly coffee for me-it was black-no cream, frappa, mild or anything else that would be in my stomach.
Did you have any problems with pain last time?
Well my throat really hurt from when you guys rammed that breathing tube down..
We don't 'ram' it down. We carefully place it.

After a few more questions, he said he would just do what they did last time.Later his resident showed up complete with a baby bump and acne. Do they let teenagers into medical school these days?

I decided to pay attention more this time as last time I seemed to have amnesia but after moving on to the table, I seemed to disappear again without warning. I think I remember the mask and thinking it was suffocating but that's it. When I awoke, I was by myself. It appeared I was in the pre-op area again but noticed a clock on the wall. The pre-op area annoyingly is clock-free. I was in a little bit of pain but not nearly as much as before. After an hour, they let me go home. I am trying to lay off the viocodins though I did take one before bed so I would sleep. I am trying to avoid taking laxatives. My throat is almost all healed. I just wanted to eat warm, slippery stuff. I was so hungry. Allegedly my wound is about 1-2 inches longer but I haven't taken off my swaddling to check it out. Dr. Dl will call me Monday to tell me if everything is out. She is giving it a 95% chance this time but I reminded her that I am not going through this again anytime soon. If is needed, maybe after chemo.

Wednesday, October 29, 2008

Surgery today

Well my jewelry is all off, make-up all off, and I am about to leave for surgery. Didn't sleep much as I was concerned with all the what-ifs-the main one being what if I don't come back? I guess I wouldn't know if I don't but since they knew how to put me under last time and I survived, I assume they will know what to do. But then there is the post-op pain and grogginess and the more difficult 2 wire insertion-ugh. I had a few well-wishers via e-mail this morning. Thank-you--it means so much to me to feel that I am not completely alone with this.

For my 'last' supper, Steve got me sushi and pistachio gelato. I laid off the wine this time.

Since I have a later start time and was allowed coffee with sugar, I could run. I've run more than 2 marathons worth since the first surgery. And it actually was warm (vs the snow and 28 degrees originally fore casted.

Tuesday, October 28, 2008

The day before surgery

Cute Oliver ready for Halloween. He won't be around this time to cheer me up after surgery.

This time I will be allowed to drink black coffee and have apple juice the same day of the surgery. Last time, absolutely nothing. So maybe I can avoid the caffeine headache this time and with a little bit of sugar, be able to sneak in one more run though there might be snow on the ground.
I have been running well again. It is hard to believe that I am sick. After my run I walk through the woods near my house. I used to run through them but that's where I broke my arm and now all the tree roots are covered up with leaves making it even more dangerous to run. Anyways today I ran into an acquaintance walking his dogs. So he asks, how are you? Now I know this isn't a call for a listing of all my grievances but it seems dishonest to say I am fine when I am not (though most of the time, I say I am ) I said-well this will be my last run for a while and I will miss running so much. I then say the whole sad story.
Sunday Julia had a costume party for dogs at her store. Naomi had passed out fliers all over Dexter the day before. I couldn't get up enough energy to go. Josh had come over to visit me for a while. Later Jan came over and we watched that silly HBO vampire show. She still is living out of hotels since her condo is full of dust from the demolition, which is very upsetting to her.
I had lunch at WCC with Brenda. It was nice. Not sure where Steve is. He left 4 hours ago to go running. He is very sensitive to cold temps and everything has to be just right before running so he goes indoors. Sometimes this irritates me because I will go out in any weather even with a bleeding wound. Like, why can't he just tough it out.
So I am dreading tomorrow. I hate pain and waiting around for hours and I won't have the support I had last time.
Hopefully they will get it all out this time.

Sunday, October 26, 2008

How much is life worth anyway

Back in 8th grade, I was in this pilot program for 'gifted' English students. We had read this French short story in which the main character makes a decision to go to prison for 10 years in return for alot of money. The teacher had asked me if I would have made the same decision and I said yes. He looked at me disapprovingly and went on to the next student who had said definitely no. How life was so important and no amount of money could ever make up for ten years of it, blah, blah blah. Although I usually could be counted on for the right answer in many other subjects, I clearly, to the teacher, lacked a moral center. I felt bad about this for a long time. It was just another example on how different I was from everyone. Of course the constant lack of money in my life compared to my peers had a part in my 'wrong' answer.

So now I will have to make a similar decision though no money is involved (except maybe the insurance company's and I'm not leaving a job like many people who are faced with this). To increase my chances of living from 66 to 76%, I need to put myself through 6 months of hell, which also could destroy my health-both short term and long term. Now I know the correct answer is yes and that's what the doctors recommend but part of me is wondering if it is really worth it.

It was the Moms group last night. Brenda couldn't come due to many competing family issues. We were at Jo's who spends much of her time making her house special. Everything is always so nicely decorated. Maybe when and if I can put this all behind me, I can concentrate on whipping my house into shape. We were there almost 6 hours having excellent food and wine though I am limiting myself to 2 glasses. Everyone was unusually talkative about their lives except me. I am just in a different place and a very scary one. I am going to have to figure out a way to make myself pleasant to be around and not make people sad or I will be one very lonely person.

On another subject: Italian culture. I was reading my travel magazines yesterday. In one story, some Americans had rented a house in a little Italian village and were taken back with the 'no clothes dryers in Italy' rule. To Italians, clothes dryers are a waste of energy plus they have lots of sun and very low humidity-clothes dry out very quickly on these special racks they have or lacking a yard, there are clothes lines. At any rate, one's clothes are on full display for everyone to see and this really conflicted with the American's sense of modesty. But in made me remember a walk Dana and I had in Castelvecchio last summer. We were outside the house where the nuns lived and the ladies' underwear was on full display. Lots of fancy, lacy underpants and bras. We were surprised and amused. Of course, we usually hung the underwear in our rooms and the other clothes out in the monastery's back yard racks.

It is Shanna and Ramy's first wedding anniversary today. So much has happened since then.

Saturday, October 25, 2008

Hair today-gone tomorrow

This is Naomi's senior picture. Note the hair. Last June or so, she insisted on getting it cut and they ended up taking 8 inches or so. Since it was thick healthy hair, they suggested she donate it to this group that makes wigs for cancer patients and she came back with a big bag of hair and paperwork that I never got around to dealing with. I was upset that her hair was now so short so I waited to the last possible moment this fall for the senior pictures for some of it to grow back. Anyway, when I suggested that we use that bag of hair for my wig, she became very upset as she doesn't want me walking around with her hair. It isn't apparent from the picture how bright red her hair is. I don't quite have the right complexion for red hair anyway. Also, she has beautiful blue eyes, not brown. She snuck those brown contacts past me.

I am thinking blonde. In indoor lighting, my hair appears blonde and I like to think it is as my delusions make it possible for me to live through the day, but in outside light it is clearly gray. Grave's disease people tend to get gray very early-the white hair popped out after being in labor with Shanna. I've never attempted to dye it despite numerous pleas from Naomi. Some people think I do anyway and check for roots.

I do need a haircut but since there is a good chance of losing my hair in the next month, hard to justify the time and expense.

Tonight is our 'moms' group. We were all part of a post-partum support group many years ago-the babies will turn thirty next summer. Five of us still get together. We have 4 grandbabies now between us though Brenda has contributed 3 babies to this. But the moms have been great in supporting me. We've all had difficult journeys over the past 29 years or so and try to be there for each other.

The social worker didn't call yesterday. Good thing I wasn't about to commit suicide. Still don't know what the proper response was when you are told that they will keep hacking away at your breast until every last spot is gone and you see spots all over the place. Until that time, I had been rather stoic as they told me bad news, sometimes so stoic that they assume that I didn't hear them or that I just don't understand the implications because I must be stupid. Once I was getting an ultrasound to check on a baby while I was spotting. They told me there was no heartbeat and I didn't react. They repeated it again and asked if I knew what that meant and I calmly said, yes it means my baby is dead.

Martha came over with fresh raspberries. She is a very busy person driving to Toledo every day to teach plus write her papers and visit her large circle of friends. She had 2 types of cancers at once more than 10 years ago but her treatments still come up to haunt her. She has been hospitalized three times for adhesions- the last time while I was in Italy.

It is raining. I am waiting for a break so I can get a run in.

Friday, October 24, 2008

The one percenters

Percentages are strange animals. They are an attempt to scientifically assess the odds of an occurrence but seem to take mythical meaning sometimes. My brother was having a third child in which the chance of a Down's baby was 0.5% based on his wife's age. This was also the odds of losing the baby due to the amnio. (they recommend amnio when the risk of Down's is equal or more than the amnio risk even though the numbers don't mean the same thing-I have 2 cars and 2 legs but the chances of his wife having identical twins was 0.5% also and this had already happened giving the 0.5% extra power to him. The baby-now 19-is fine and there is just one of her. People kept assuming all the babies would be doubles because it happened before. One of my blog circle was told repeatedly the chances of a certain side effect happening was only 1%. This had happened several times giving her a feeling of trepidation every time the number 1% was thrown around instead of the comfort it is supposed to provide.
Only 1% of the population gets Graves's Disease and then I have it (BTW, the deal was this was supposed to my ONLY life-threatening disease) and only 1% break their waters prematurely and NOT go into labor. So my mind is fighting my gut feelings about statistically remote possibilities actually occurring. Still this 76% chance of survival-24% chance of dying is hard to find very comforting though advances are being made all the time theoretically improving that 76%. 3% is the chance I will die of something else with the majority of that risk being from a heart attack though my gut feels the combo of semi+ice+expressway is a greater chance.

So thank-you for your support, my breast-blog friends and my old friends. I do feel better today. I went for a longer run without worrying about breast bounce. If being tugged on and squished repeated yesterday didn't open the sutures, running wouldn't. I've run close to 31,000 miles without breast bounce doing permanent damage nor do I especially sag because of it (or from the 3 breast fed babies) but I shouldn't get too attached to them (the breasts-not the babies)I suppose. Sadly my running days are coming to a close with the new surgery and then chemo though I know of a man, Norm, who did triathlons while doing chemo but ultimately lost his battle.

Thursday, October 23, 2008

Still down

I'm back from my very long imaging and surgical consult. I spent more than 3 hours having repeated mammograms squishing my sore breast repeatedly making me late to the surgeon by more than an hour. I am full of microcalcifications including my old suspicious spot. They want to remove them all. It sounds like they will remove almost as much flesh as before and this time, they will put in two wires. As they don't have a nice juicy tumor just below the skin to impale, it will be harder. So I was pretty much in tears with the surgeon. She said that I looked anxious. Not anxious just full of despair. I said the odds calculator said I had a 63% chance with chemo, 58% without it. She thought that sounded low so plugged in all the numbers in her 'physician only' model and came up with 66% and 76% with 3% in both cases being death from other causes.She spent a long time with me. Very sweet but it is still hard to shake this intense feeling of doom. The regime used for people in my case is this 4 cycles of adriamycin+cytoxan followed by 4 cycles of some taxol derivative. 6 months. I think that this is what Kathy of Chicago went through (life is Sunny blog). I also said that it sounded like it will be hard to get everything, maybe just cut the whole thing off. She said it would not improve my odds though I would skip radiation. I told her that I don't want to be stuck in this cycle of cutting stuff out, find there is more stuff there, then scheduling another surgery-meanwhile delaying chemo. Also these surgeries are hard on me. So the compromise we came up with was that this would be my last surgery for a while. After I am finished with chemo, they would check to see what was left and then attack. As for my tumor, it wasn't especially bloody-a good sign-as capillary density is proportional to this growth factor VEGF responsible for growing blood vessels to the tumor. Tumors that have alot of this factor are able to grow quickly and spread. However, the tumor had invaded my lymphatic system though it didn't make its way to the nodes yet.

As for Steve:We are speaking. We were supposed to have this meeting with a financial planner tomorrow and I told him to cancel it or just do it by himself. He said it was my money too but I said I just don't want to be figuring out how to get the highest returns possible when all I can think about is whether it is worth it to go through chemo making me an invalid for 6 months just to get just a small increase in survival. And I can't do it alone as I seem to be now. Maybe I should just take my chances and forgo the chemo.

He went to Naomi's teachers. No big surprises. She is just grossly immature and difficult. Since I was there so long, I didn't need to wait long after the conferences for him to pick me up. Otherwise I was going to take the UM bus which would go to Commonwealth.

No cancer card

I got a visit from the "Community Standards Police" yesterday. Someone complained that I have an 'abandoned' car in front of the house. Any car that hasn't been moved in 48 hours can be considered such. He drew a blue box around the brown monster and said it needed to be outside that box when he comes back in 48 h. Thanks neighbor, I have cancer. Of course, despite its new battery, it wouldn't start though it did later when Josh came over with jumper cables. Meanwhile Josh's fan doesn't work so no heat or defroster for him so Steve gave him one of our cars after driving him to the dealer thinking that he could use the brown monster today when WE NEED TWO CARS. One for me to go to my mammogram and surgery consult and one for Steve to go to Huron.
He couldn't get it started again so something more serious is wrong-starter? voltage regulator? I guess we could be pushing it back and forth every 48 hours but leaf clean-up is coming up and it needs to be off the street so a long term solution must be made ASAP.

Of course Josh could have waited one more day to fix his car and I wouldn't be stuck for walking 2 miles along Plymouth Rd during rush hour or waiting 2.5 hours for Steve to finish up teacher conferences that I really needed to go to for at least part of them. Steve should have realized this but he isn't talking to me still other than when absolutely necessary. He did sleep a remarkable 11 hours last night. If by some chance you do read this, is this how you had wanted to spend the time we had left together?

Meanwhile I am gathering questions for the surgeon. I am afraid to go there as every time, I get
progressively worse news. Plus the mammogram of my sore breast will feel so good.

Wednesday, October 22, 2008

The world doesn't stop just because you have cancer

I have been having a problem being that happy cancer warrior that has entered that state of grace being thankful for every second of life that I live beyond the diagnosis. Also, sadly, there really isn't any cancer card to play as in "I have cancer so I can say what I want and you have to do what I want because I might not be around..." I realize how manipulative those words are and what a low blow it is but it didn't stop me from uttering them anyway. Every marriage has its problems. We had come to a tacit understanding that there are certain issues that are there but to keep peace, we never, never discuss them. Once burnt, twice shy..or in my case twenty times burnt....I don't think Steve reads this as I didn't tell him of its existence and divorce would be certain if I mention 'the problem' but suffice it to say, the problem reared its ugly head again and instead of ignoring it per usual, I thought I'd deal with it carrying my cancer card and instead was hit with denial, extreme anger, and the silent treatment. This silent treatment usually lasts a week and so far the cancer card isn't giving me any reprieve. Suffice it to say, I am in a hole which is filling up with more negative thoughts.

All is not doom and gloom although a good part of me feels it is but I need to focus beyond that. Josh called yesterday saying his big talk was a success. He has had sleepless nights for the past 4 days and is very relieved. My cousin Wendy sent me a thoughtful gift, thank you so much. Also I am slowly amassing some 'breast friends' on the internet who've gone through this mess. The weather is cool and sunny, perfect for running. I am back to running awkwardly holding myself (as discreetly as possible) as my containment system rubbed my node wound open. Tomorrow I go to the surgeon for my consult. The wound is making it difficult for me to shave, which I find embarrassing.

Monday, October 20, 2008

Surgery date

UM called me today with my new surgery date of Oct 29th. They also scheduled another 'wire guided biopsy" but they might cancel that depending on what the mammogram Thursday shows. I am hoping very much it isn't needed as it is quite painful.

While editing my posts, I noticed I had received a comment from a triple negative person, Renee a few days ago. These posts I guess are public which I found out when I was researching "Secinaro crater" and came up with my Italian blog. But anyway, this woman's point was that I shouldn't read anything more than 2 years old as the older info is so much doom and gloom. She is about 3 months ahead of me with a similar diagnosis although her tumor is smaller. She had possible genetic issues delaying her surgery. (If you find you are BRAC1- they recommend bilateral mastectomy)She keeps a blog and discussed daily how that was for the first round she finished. I will probably have a similar regime so it was interesting if not scary reading. Lots of nausea and mouth sores so bad, she couldn't brush her teeth. Also hair loss. She got wigs ahead of time. So she's supposed to have 4 rounds. If it were in her nodes, 6 rounds. Her initial reactions were similar to mine though she had the additional burdens of a husband with possible adrenal cancer (turned out to be benign) and a job. Her mind seems to be in a better place now despite being in the longest and most painful section of the 'triathlon' as she calls it. I'm in the initial leg-the surgery section, then chemo, then rads.

Brenda and I went to see baby Matthew who now is 6 days. Very tiny and precious. We then had lunch at La Fuente so I could have my 'arroz con mariscos'. If it weren't beginning to rain, we'd taken a walk though I had a brief one later with Steve.

Sunday and the birdies

Naomi last weekend dressed for homecoming among some of my patio flowers, some of which are still alive after the hard frost. Note the shiny blue shoes.

So I am trying to enjoy each day as they come, which may be a bit melodramatic as the worse odds I've seen gives me about a 60% chance of being alive after 10 years and treatments become more targetted all the time. Shanna and Oliver left early without me getting a chance to take a 'good' picture of him though we have plenty but none of them the way I see him.

It was a cool sunny day. I had gone for a 4 mile run, that though I solved the breast bounce issue, I ended up abrading my skin in several places and my node wound is now weeping. Later Karen and I went for a walk in Kensington. When it is very cool, the little songbirds cluster together and beg for food-the flock consisting of mainly chickadees, tufted titmice, nuthatches and the odd downy woodpecker. Karen was thrilled to have the chickadees and titmice eat out of her hands, a first for her. As the day went on, it warmed up and the birds were less interested, a big disappointment to the many children there with their outreached hands. Although we saw a deer calmly feeding near us, we didn't see the cranes except from a distance and saw no turkeys. We walked about 3.5 miles between the 2 trails. It is pretty there. In the nature center, which is nearly the same as it was when I was a kid, they had a display about deer in Michigan. The collective herd is 4 times the size as it was in the 70s. I never saw a deer growing up in southern Michigan. The county with the most deer collisions is Kent followed by Jackson. When we had our accident 3 years ago, the sheriff told me Scio Township (where my car smooshed the world's largest buck 0r rather it smooshed my car and where Josh lives) had the most collisions in the state though it seemed that Washtenaw was only about 6th on the list.

Later we went to Novi to Karen's mother's house to pick up boards for a ramp for her arthritic dog Cisco taking the backroads through fall colors to get there. Nancy called later to alert me to a special on the Herceptin story on TV, a drug that targets an aggressive breast cancer. However, I don't have this receptor (the third negative in the triple negative) so it wouldn't help me much. A mixed blessing as the drug costs $70K/year and has especially nasty side effects such as heart failure and one still has to take the traditional chemo .

Lots of e-mail today. Thank-you folks.

I am taking a break from running today plus I got a late start on my day. I wake up in the middle of the night and start obsessing. I did this even before the diagnosis so it is nothing new just gives me a new subject. I try to replace it with a mindless activity such as karuko. I think this afternoon Brenda and I will see her new grandbaby.

Sunday, October 19, 2008

Arrivederci Oliver and Shanna

Oliver waiting to come here at the airport
Dinner last week. The whole family except Ramy

The Lion Prince

Flowers after my surgery
I've been trying to keep myself as occupied as possible during the last few days plus spend time with Oliver and Shanna, who are on a plane back to Boston as I write this.
Friday Olga watched Oliver so that we could go out to lunch babyfree at the Macaroni Grill followed by gelato and shoe shopping for Shanna. Josh came over to tweak his presentation that he has to give tomorrow to his department and higher-ups to about 400 people. Karen came over later with wine and beautiful flowers that replaced some of the sagging ones received earlier. Shanna, Karen and I shared several bottles and Olga- made babaganoush-it was a nice time.
Yesterday Naomi worked in Dexter and we all went to lunch after we picked her up after her shift. I was too tired to do much or eat. Shanna then went to her in-laws for the umpteenth time returning with more Arab goodies that are meant for Ramy but with the current luggage restrictions and travelling with the car seat and stroller, there is no way she can bring the stuff back to Boston. Our refrigerator is full of this stuff. Ramy's step mom isn't as good as a cook as the mother.Shanna and I went out to dinner by ourselves. It was fine but she definitely doesn't want to hear anything about my cancer.
I've run almost 12 miles over the last few days. My endurance is returning and I've been wearing a second too tight bra that stops alot of the bounce so I don't have to hold my chest as I ran. It has been sunny and cool-perfect for running but chilly for sitting on my patio.
I've been reading all I can about triple negative bc. On the website, it seems most of the people on it have the BRAC1 mutation. On the side the people have inherited it, they have hardly any relatives that died of 'old age'. Lots of women with this mutation just have preventative mastectomies and ovary removal but they still can get breast cancer in the chest wall and metatheses.

Thursday, October 16, 2008

The journey

'Every journey has a destination of which the traveller is unaware' Buber

It's been more than 6 weeks now since I began this journey with increasingly scarier information with each step. Right before I had my mammogram, I had this incredibly naive thought that I was immune from life threatening illnesses and would live forever-that I had paid my dues with Grave's Disease, etc. Pride goeth before a fall.

Shanna will spend more time with me and less with the in-laws although she might let them have Oliver as he is really who they want to be with. She will leave Sunday.

I am trying to make sure I am not too morbid around people as it just makes people uncomfortable.

I joined the Triple Negative Breast Cancer Support group as they have members scanning the literature daily for new news on its treatment and put everything in one place. Treatment targetting various breast tumor markers is just starting. Advanced B cell lymphoma used to be a death sentence but now (for the past 6 years or so) fully treatable. Lots more work needs to be done before things are curative. I have to keep in mind that lots of the statistics are based on older treatments and survival rates should keep going up even as I am being treated.

I went to the mall last night with Jo and we had dinner and then looked at baby things. It was a nice time.

I didn't run today as my energy level was too low. I did walk for a mile.

Steve has been Mr. Step and Fetchit today and I feel bad. First he went shopping (after running for more than an hour-his runs are longer and longer), then picked up Naomi's senior pix, then took her to the dentist (which I had completely forgotten about-I usually keep her schedule straight)and now he is at basketball with her. It is a good thing we are retired. I don't know what would happen if I had to work through this thoough people do it all the time.

Martha brought over a nice dinner full of lots of vegetables, grilled salmon and raspberries. The soup was especially tasty. I have to change my diet so much. On the TNBC site, there was actually a study showing much lower reoccurances among people with low fat diets for TBNC though it didn't matter for the hormone positive folks, which is strange because fats are a source of estrogens.

Wednesday, October 15, 2008

triple negative

So I've been characterized as a triple negative (TNBC), which in general has a very bad prognosis due to its aggressiveness and lack of response to typical treatment. Only 15% of breast tumors are like mine and in general occur mainly in young black women. Go figure. The risk factors are different than 'normal' breast cancer. In general, having alot of kids decreases your chances of breast cancer but not so for triple negatives. It is hard for me to read about TNBC as it always starts with its grim characteristics but there may be a few positives. Some chemo regimes work better against it approaching survival rates of those hormone positive people. Also cutting out dietary fat doesn't seem to influence the survival of those positive people but it does for the TNBC. I have found a site devoted to TNBC as we are so different from the rest. Unfortunately it is more profitable for drug companies to target the majority tumors.

I hate just sitting here with the remnants of the tumor still in me.

Also Shanna is visiting her in-laws for the third day in a row. This really bothers me especially the mother-in-law who demands every other day appearances. I know she really loves her grandson but how about some compassion.

Tuesday, October 14, 2008


These are particular tumor markers somewhat common to breast and other cancers. Diane had written me about the latter as it is predictive of survival. I read up on it. There were a group of women who had low grade (good), small, estrogen positive who ended up dead despite their 95+% chance of survival. They took their tumor samples and decided that they had EMSY in common. 14% of breast tumors have this along with 17% of ovarian cancers and it is hasta la bye-bye for them unless they get additional treatment. It is somewhat associated with the BRA2 gene, which I probably don't have. I also have an estrogen negative and high grade so EMSY is probably not a problem.
However VEGR is another worrisome story. It is vascular epithelial growth factor responsible for angiogenisis or supplying blood vessels to the tumor. All tumors have some but the more, the worse it is. Apparently the density of blood vessels is an indication of the amount. So was my tumor particularly bloody? I saw the biopsy pieces which were mostly white with a few red streaks. I have nothing to compare this with so a good question for Diehl. Meanwhile there is a drug Sutent on the market that targets VEGR but hasn't been approved for breast tumors. Also there are studies that indicate curcumin is an inhibitor. Curcumin is responsible for the smell and taste of curry powder. So I should up my curry intake.

I had a dental appointment this morning. No cavities but plenty of ageing fillings just waiting to crumble. He again recommended that I replace them with crowns at the rate of one a year as these fillings aren't going to last forever. I said something about they might outlast me and despite my apparent good health, I am not healthy and won't be able to deal with dental work for the next 9 months or so. He gave me lots of stuff for the inevitable dental problems that chemo causes.

Sue in Italia redux

I met up with Nancy in Farmington and she drove us down to WSU. It was fun catching up with her. We got there early so I went looking for Rafeale wondering what had happened to my independent study project that I need graded to get reimbursed for the tuition. He immediately started talking Italian when he saw me. When he asked how I was, I answered comme-ci, comme-ca by mistake instead of cosi-cosi. Dumb-having trouble keeping languages straight.He said I need to go on Wayne's web site for the grade, which would be an A minus. He said academic papers need references, which I had none but otherwise the paper was clearly an A as it was thorough and well-written. Jim, my Italian teacher then showed up then all sunburnt. It was fun seeing them again. Down in the movie room, I found Joann sitting behind Nancy. They hate each other. Holly, one of the nicer students was also there. I said that I think that on the common website I could identify which pictures were hers. I was right. I had been walking with her when she had taken some of the earlier pictures. She had put up only 40 or so of her 1000.
Piero, the advanced Italian teacher, gave the intro to the film. He is so cute but still is so sweaty. Still hasn't discovered that American custom of deodorant.He will be married in a few weeks in a civil ceremony before having the Catholic ceremony in Italy this summer. WSU has yet to give him a full time position-he is in adjunct hell-which is cheaper for WSU.

The theme of the film festival was the 'piazza' or public square. Italians spend alot of time on theirs observing and commenting on everyone. Apparently all the films have alot of piazza time in them but will feature different sections of Italy. Last night's movie-Divorce, Italian Style (1961) was set in Silicy. Divorce was illegal until 1974 so if you didn't like your spouse, too bad. There was a provision in the law that if you found your wife (not husband as it turned out) in bed with someone else, you could kill her and it would be considered an 'honor' killing. Still illegal but had a very light sentence. So the main character (played by an excellent Marcello Mastroianni)tries to figure out how to get his suffocating wife fall in love with someone else so he can catch them in the act. His attempts are very funny. The movie actally won an Academy Award for best screenplay that year despite it being a foreign film. Everyone really liked the movie and it had lots of moments that reminded us of Gagliano with the church bells, the saint processions, the over-excited talk and hand gestures..
Elena, my cinema teacher, was there at the end. It was so good to see her.
Joann was wearing a black denim jacket. When we were in Italy, Nancy was hell-bent on finding one there so we went to many stores looking for one as she hadn't found one in the US but Nancy didn't notice Joann or her jacket as she didn't even want to make eye contact.
Nancy and I went back to Farmington where I had left the car and had a drink and some munchies. A good time but the rest of the movies are on Wednesdays when she takes care of her grandchildren so I need someone else to go to WSU with.

Monday, October 13, 2008

Family dinner

Sadly we are not into eating regularly on a nightly basis but almost every Sunday, we have had 'family' dinners to get the family together if just briefly. So Josh and Julia came over and of course Oliver and Shanna were over. Oliver loved interacting with his aunt and uncle. Since my energy level is so low, it was agreed that I wouldn't have to do much cooking-just to give advice. I do notice that I am stuck for dishwashing. Steve barbequed steaks and made potatoes, Shanna the dessert, and I made my Italian 'bietole' this time with 'rainbow chard', which my guests regarded suspiciously. J&J brought me some expensive wine and chocolates.

I was able to run much more easily this morning and have discovered a more discreet way of minimizing 'breast bounce' without looking so stupid and getting arm cramps on top of it. My heart didn't go out of control like yesterday and I recovered much more quickly. Still I felt faint after I stopped but I had been bending over deadheading my pretty much dead petunias.

Later I am leaving the house for the first time (other than my walks) and will pick up my Italian roomie Nancy to go to WSU for the first movie of the Italian film festival that Elena (my nice cinema teacher) is sponsoring. I am looking forward to it.

Shanna and Oliver are out visiting Olga.

Sunday, October 12, 2008

Running with cancer

Despite the prohibition against 'strenous' exercise post-surgery, I decided to try to run today. I had been doing so well up to just before the surgery and I didn't want to lose my fitness. Walking just isn't doing it for me. The biggest problem is keeping my chest still. I put the binder over my running bra but still lots of movement. I actually heard something sloshing. So I ran holding my chest with one arm. It was hard and I looked stupid. I only went 2.2 miles with lots of stops and my heart rate went way higher than usual. This surgery must do something beyond just the cutting. The wound looks horrible-all purple and yellow and smells very funky like of all things, selenium. However it doesn't look infected.
Martha stopped by with the cancer nutrition book written by a former neighbor who had cancer 3 times. Lots of vegetables, little fat, dairy and meat and lots of soy unless you have an estrogen positive tumor. Almost everything I read discusses the risk factors for estrogen positive cancer but doesn't provide many clues for the estrogen negative type other than the genetic cancers (BRA1,2)which I probably don't have. There is this protein in many tumors, SPARC, that is needed for the tumors to spread and there is a clinic trial for metastatic cancer patients to try it.
There has been a huge push recently as the technology has just made it possible to see what proteins a given tumor expresses and then target its expression. Of course finding a selective inhibitor is one obstacle especially one that can be delivered to the tumor site. Since breast cancer is disproportionately funded, alot of effort is centered around it.
The weather has been nice and I am able to sit on my patio surrounded by my flowers (excepting the petunias that have succombed to some strange disease specific to them). Brenda stopped by yesterday. Her grandson should be born tomorrow. Steve and I took Oliver to the park. He enjoyed the swings.

Friday, October 10, 2008

Mixed news

Dr. Diehl called today with the 'mixed' news: the good news being that my nodes were clean so there is a 98% chance the cancer didn't spread beyond my breast but the bad news is that the tumor was twice as big as it appeared on the mammogram.There were two tumors and parts of one are still in me so new surgery will be needed. I am officially a Stage 2a, which means with treatment I should survive the next 10 years. They will give me 2 weeks to recover before taking new mammograms. Going through surgery again is really upsetting.

I finally took all the dressings off as I really needed a shower and surveyed the damage: I have Frankenbreast. I have two 4 inch long incisions sewn crudely together with black thread. The one incision was to get my nodes out, at least they don't need to do that again and I should be spared lymphedema as they left the armpit nodes alone. At least it doesn't look infected and it is no longer painful as long as I am tightly bound. They will go through the other incision again to get out the remains of the tumor. I don't feel very good as I think I have a mild cold. I am off the drugs as they were giving me a stomach ache. I did go on a 3 mile walk today. The weather has been very nice and I am jealous of all the runners.

Shanna and I took Oliver to Sugarbush yesterday where he had his first swing ride. He liked it for awhile. Deb came over with her entire chestnut harvest for me. We sat outside for awhile and the hummingbird made an appearance. I assumed it had flew south 2 weeks ago. Anyway it was nice that she came over. Olga sent me flowers today and I get several e-mails a day wishing me good things. I had alot of trouble last night thinking good thoughts as I thought I would get the phone call today. I had been reading about metastases. Breast tumors go to the lung, bone, liver and then brain in that order but rarely as a discrete tumor that one could just cut out as the tumor spreads through the lymph nodes. Average life span once they have been detected is 2.5 years. But presumably I should be spared all that because I have clean nodes. Still they want to do chemo and it appears that for the next 6-8 months, my life weill be very unpleasant.

Thursday, October 9, 2008


I spent yesterday totally vegged out gobbling my viocodins but I am taking myself off of them and will take walks today. My throat doesn't hurt so much though I think I have a cold. All the blue dye should be out of me by now. The surgery area still is sore. I haven't looked under my dressings. They didn't seem to take any nodes out of my armpit. Shanna and Oliver hung around on my bed most of the day. Josh was supposed to come over but he 'forgot' which made me sad. He is coming over today instead. Naomi used my surgery as an excuse to skip bball but then didn't spend any time with me . Later Shanna and I saw a German movie, The Life of Others about a Stasi agent who was supposed to spy on a potentially dissident writer ends up subverting the system during the Communist era.

The next step is finding out the results of the surgery either tomorrow or Monday. Two big things: margins-whether they got most of the cancer cells out and my nodes. If the nodes are clean, there is a 95-98% chance things haven't spread. They already told me that by looking grossly my nodes look clean (80% confidence). If the margins are bad, they go in again and remove more tissue-they do this 30% of the time. If my nodes are bad, they go in and remove more of them. Even if everything is clean, they will wait until I can have another mammogram to check for calcifications that might have missed before leaving me alone. Obviously awaiting for this surgical report makes me nervous.

Wednesday, October 8, 2008

Pissing blue

Yes I am still alive for those who are wondering. I was wondering myself if I would live to see today.

In the paper yesterday in the continuing series of economic gloom in the auto industry, they interviewed a former Ford engineer who still is loyal to his company despite it laying him off. "I still bleed blue." he was quoted. Well I am still pissing blue though not out of any loyality to Ford or even Kizer whose color also is blue though I wish both companies well out for profoundly selfish reasons, but because of an intensely blue dye used to map my nodes. Presumably my bad breast is blue too but I haven't removed the swaddling to confirm that or the major pit it now contains. But the bright blue toilet bowl is sorta freaky.

Sign up for teacher conferences was early on the agenda yesterday. I had only a brief window of time (so I thought at least). I get there and there's a line out the door so I just turn around and go home full of self-pity. Like how come I have to wait in a line when I have surgery that day and why couldn't Steve volunteer to do this which of course led to what is going to happen when I can't do the things that people rely on me for? It reminded me of my miscarriage long ago, a week long process between finding out the baby was dead and it actually coming out. I would have painful contractions and they would just stop but once the contactions had begun, I would think this it only for them to stop after an hour or two. During this time, I was running (as in organizing)a race in charge of volunteers. I had to get them all together and tell them en masse what I expected of them. Steve was my co-chair. There was alot of grunt work involved that he didn't have to face the public for that he did but it was assumed I would do all the public speaking. Of course I started having the contractions when it came time for me to speak but Steve is so absolutely terrified of public speaking, I knew I couldn't ask him. Ironically, a few days later when I was having them for real, a woman was berating me for 'poorly organizing' my girl scouts who were water passer-outers. The next year, she lost a child also and a very mean part of me thought it was karma but of course I didn't interrupt her tirade to say excuse me my dead child is about to come out of me right now so I rather not listen to this abuse. But then Karma comes and kicks you on the butt. She had breast cancer pre-menopause. I could see her from afar with those pathetic head scarves but I didn't send her a note or anything despite at one point we had been training partners for triathlons. I try to be logical and realize my cancer has nothing to do with how nice I haven't been. For the record I was nice to my former softball teammate with cancer and sponsor her in breast cancer events. Both are still alive despite maybe scarier prognoses.

I digress. Steve eventually figured out how to sign up for the conferences though I will be still stuck dealing with the teachers. Most of yesterday was spent waiting, waiting, waiting. Things kept coming up with my fellow surgical patients. I could hear the clerk later canceling all of Dr. Diehl's patients for the afternoon, which was probably for upsetting to them. The first step was for a wire to be inserted into my breast while being smooshed under the mammogram machine. I was told that this would be the hardest part (in terms of pain). Indeed, the patient before me kept passing out and 'being difficult' delaying the whole day. Right before it, my pulse was 97 vs its usual 55. (Steve before he had to give a talk in front of the chemistry dept went up to 180 so I guess he was twice as terrified). They do give you lidocaine and it is very creepy but I presumably was their easiest patient ever setting some sort of time record. I was then wheeled into the presurgical area and told to change into 'their' gown. I said why can't I just use the breast center gown. Oh ours are different, we have snaps. Well before I had use of both arms and now I was told not to move my right arm at all or I could pull the wire out protruding from my breast. Why didn't they give me the surgical gown first when it would have been easy for me to deal with it or why have me come in at 9:30 when as it turns out, my surgery wouldn't be, until 3:30 why why why. Shanna showed up around noon. Olga offered to babysit Oliver to free her up. I guess this is a nice gesture but suspect she was using the opportunity to sneak hummus in him unimpeded. I had a slight headache from lack of caffeine and was freezing though they kept putting warm blankets from the blanket oven on me. The staff was very nice. The PA had an interesting Palin accent or speech impediment, we couldn't figure out which. Diehl showed up all apologetic about her uncooperative patient that threw her schedule off. I do like her. She thought I was remarkably calm-the pulse had gone back to 55. Right before my surgery, she came in again to warn me that they were just cleaning the operating room. I asked why, is there blood splattered over the walls like a slaughterhouse? The anaesthesiologist taking my history did ask about my alcohol history. I didn't mention my half pitcher of sangria I guzzled the night before but I did ask why she needed to know how much I drank? She said that the more alcohol I drank, the more anaesthesia I would need. Shit, do I tell her now that I probably drink more than a glass of wine a day? I meekly said that I seem to have a high tolerance for alcohol, will that translate into needing more drug? I worried they wouldn't give me enough but she said that wouldn't be a problem. Of course I worried they would give me too much and I wouldn't come back back I guess I would never know. She had dark circles under her eyes and two closely spaced babies at home. Hopefully she could overcome obvious sleep deprivation to calculate this right.
They wheeled me into the room. I don't remember moving to the operating table though I must have been awake to do that. I do remember them putting a mask on me telling me it was pure oxygen and to breathe deep. Must not have been too pure as that was the last I heard until 3h later. I was warned that there would be a time that I could speak and respond but I wouldn't remember it which did happen. Apparently I did alot of mumbling which drove Steve crazy as his hearing is getting worse and worse and the part of my brain still functioning didn't remember that. I slowly returned to reality. Shanna said that in my stupor I had said I was in pain and they gave me fenantyl-very heavy duty so when I did come back, I didn't feel much pain beyond my throat hurting from the tube. It still does despite my meds. I've had mild sore throats before that ibruprofen would quickly ameliorate-I am surprised the viocodin isn't helping. I can't really speak now beyond a whisper so maybe the throat was damaged. I certainly didn't want to talk to people last night as speaking is an effort. I wanted warm stuff-slippery warm noodles. Now I keep drinking coffee but haven't figured out what would be good to eat-nothing that would scratch my throat. I was very groggy and getting dressed to leave was an effort as was stumbling to the car. I am not in much pain but I have been 'on top of my meds' to make sure.

I returned to pretty flowers when I got home. Thank you dear friends!!! Shanna and Steve also got me sunflowers-girasole (Italian for turning to the sun).

Martha had called the night before wondering what I would need that she could supply. She had gone through 2 nasty cancers and hell and back. She said if I needed to rage against the diesase I could call up and scream at her. I asked her if this had been something she needed to do and if she had found someone to abuse. No but some people need to do it and she was willing to take my abuse. Well thank-you Martha but you would be the last person I would ever abuse.

Tuesday, October 7, 2008

If I die before I wake...

It is the morning of my surgery. I didn't sleep well-my heart was pounding. Maybe my thyroid level is too high. I also have a slightly raw throat but I don't want anything to get in the way of having this terrible thing removed.

Shanna, Oliver, Steve and I went to WCC for their "French" lunch. Usually it is good there but not yesterday. Our waitress was horrible making us wait for everything while we had an impatient baby with us and whined when we complained that we didn't have water after the 2nd request that they were short-staffed and she was doing the best she could.

I then went for my pre-op meeting which was over an hour late driving me crazy as it was going to make me late for the radionuclide scan. I tried to eliminate some of the steps so I wouldn't be so late. They said I could arrange to have the chest x-ray later as they were going to do the surgery regardless of it. The chest x-ray is just to check for metateses. They did an EKG, blood work, went over all these consent papers including donating my tumor to science. "no you won't get any benefit from it but the community at large would.' When I finally got to the hospital half hour late, they said they didn't have my requistions so that was going to take a while. I asked if I could go have my x-ray? Sure just down the hall. When I got to the place he told me to, it said GI radiology. The clerk said I would have to go to Taubman-which was far away. They sent me here. Well this is for inpatients and I don't know if I could fit you in. How long will this take as I am an hour late for nuclear medicine? They will wait for you.

I didn't have to wait long but had to put these stupid stickers on my nipples so they wouldn't be confused for tumors. Later the nuclear medicine guy was puzzled why I had this strange thing on my nipple. He gave me 3 injections of unspecified radioactive tracer into my breasts. It didn't feel good. It took 3 hours to travel to my nodes. We were free to leave and return. We went to Happy hour at Cafe Habana and shared a pitcher of Cuban sangria and had dinner. Later Shanna read that I am not supposed to drink alcohol 24 hours of having surgery. This point they didn't stress. I was told that all jewelry and makeup would have to be gone, which was a problem removing my one ring with my fat, swollen fingers. Also all nail polish but it is staying on my toes. They said I am to have a thorough shower at night with antibacterial soap followed by one in the morning but they will have to live with the one shower. The sangria probably wasn't a good idea for Steve as it made him extra spacy. When I went back for the trace, I had to have 2 scans in which I couldn't move that lasted 5 minutes apiece. He kept calling my celll phone repeatedly oblivious to the fact that I was incapacitated. In the first scan, I needed to have both arms behind my head. I could feel that I still am not completely recovered from my broken arm as that was difficult. But my nodes were lit up so they will know which ones to take today.

Monday, October 6, 2008

Trying to get a few more minutes of life in...

Later today I begin the preps for my surgery tomorrow with an EKG and a chest x-ray and blood tests to see if I can survive anesthesia. Then I go to the hospital to the nuclear medicine dept where they will try to find the lymph duct closest to the tumor, inject radiactive dye into it, wait 3 hours until the stuff migrates into a lymph node and then see if it worked. Not sure what happens if it doesn't. During the surgery, this node or nodes will be removed and examined very closely for signs of cancer. If it is clean, they leave the rest of the nodes alone as there will be a 95-98% chance it isn't in the nodes. If it is, I go back to surgery and have the rest of the nodes removed. So this is an important test and I will wait nervously for 2 weeks for the results but they did tell me upfront, they will treat me as if it were in the nodes as my tumor type is so scary.

I have been trying to run as much as possible because I won't be able to after today for awhile. I managed to jam my toe somehow which hurts until my endorphins kick in-usually about a quarter mile. It's been cooler but sunny and pretty. I've been thinking about that tired cliche of enjoying each day as it may be your last alot. Maybe all this dire thinking is premature as even with the worst info I can find, I still have a 60% chance of surviving 10 years. Overall 25 to 33% people die of breast cancer who are diagnosed with it. Of course I am afraid of the pain I will have to go through to increase my chances above 50%. When people ask how I feel, I say that I am afraid of the pain and hair loss and fatigue. I sometimes mention how unfair it is that I could die and I am relatively young. People feel compelled to tell me how I will beat it and how many of their friends survived with worse cases than mine but what else can they say. I do get annoyed having to justify my feelings and having to defend myself for feeling negative as if this is just an annoying personality trait of mine. I guess I could just say I feel fine and concentrate on that alot of people survive worse and of course, I will be one of those plucky survivors. And who wants to be around a negative person-I do know this and try to keep most of this to myself.

There is a book out there whose basic point is that your positive thinking alone will get you out of cancer alive. Its premise irritated me a whole lot even when I was temporarily cancer free (like how the disabled refer to the 'abled' as being only 'temporarily' abled.) as it is just an intellectualized variation on 'you get what you deserve', a slightly nicer rationalization than God is punishing you like AIDS is punishment for homosexuality nevermind the tranfusion victims (which I very well could have been).

So I have been keeping busy and people have been nice. I did feel slightly dishonest at the Kizer reunion saying how things were just fine. Friday the "moms" came over. I did warn them that this might be the last dinner I could cook for 6 months or so. I tried to replicate some of the food Antonietta made in Italy. My 'bietole' dishes turned out all right. I gave up trying to find Abruzziese cusine in English but the Italian recipes leave out details like amounts. Shanna and Oliver joined the table and Oliver was his most charming. He is a very happy baby and easier than my own. Collectively, we went through 5 bottles of wine. It was nice to be among friends. Saturday, Naomi was preparing for her homecoming after having worked all morning in the dog store and having taken her driving test. We paid much too much for her hair, for which she should reimburse me for though I guess worrying about money is extremely absurd at this point. She was very pretty. B invited me over for dinner, which we ate on her deck with the deer silently feeding nearby. So we had wine and later she made a fire and saw a shooting star. It was very nice.
Sunday I ran through the woods on Traver. I don't go that way often but for the last 3 times, I've run by the same black man taking a walk telling me that Jesus loves me. Maybe he is a cypher. This time he added I was losing weight. J came over and we went to Ferndale to the "Fly Trap" and I got their excellent pho. We went for a walk in this new park in Southfield, which was actually closed but we slithered under the fence. It was pretty. We then went back to Ann Arbor to go to the gelato bar at the new Whole Foods. Sadly their gelato isn't as good as even the stuff in the little Italian towns but it will have to do.
Need to run so we can go have a "French lunch" before all my appointments.

Friday, October 3, 2008

My date is back

I got a call very early this morning saying that Ms. More-desperate than me cancelled her surgery so I can go instead. She didn't have a nuclear medicine slot (they must know it's in her nodes or she has a metastasis) so they scrambled to set that up. I am having all the pre-surgery work Monday. My heart is pounding out of my chest I am so nervous but I want it done ASAP as it could spread.

I cancelled my job as an election official as I could be having chemo then. Meanwhile a certain someone had used Steve's name as a reference (without asking) cancelled their election duty without explanation so they are coming to us to ask why.

My roommate N had been nervously awaiting her bone marrow biopsy. She has multiple myeloma, an awlful disease that makes breast cancer look good. She appears to have a less severe case but is nervous that it could quickly turn into a full-blown form. She had suspicious blood tests but just learned that it didn't turn bad yet.

I went to Happy Hour with the ex-Kizer chemists that still are around yesterday. I didn't tell anyone my sad story. It was interesting finding out who is where. All the chemists who moved to Groton or Sandwich are very unhappy campers. Right before he was let go 16 months ago, B accidentally learned that he had lung cancer even though wasn't a smoker. He had a growth in his mouth, harmless, but the x-rays included a chest shot showing the tumor, for which he had no symptoms. They removed the lobe. He went to work at his new job while doing chemo according to J who works with him now. The smells of the lab made his nausea worse but he kept plugging away. I had lunch with him around Christmas and he didn't say anything about all of this but he is a very private person. My point I guess is maybe chemo isn't so bad. He seems fine now.

The Wall Street Journal came today with a pink ribbon on it and kids were supposed to wear pink at school. Naomi did not but she did tell me about a friend whose mom just finished chemo. Breast cancer all over the place.

Wednesday, October 1, 2008

Surgery date

Somehow I lost my next Tuesday slot. Someone more deserving received it instead. So Oct 15 instead is the big date. I have to go in 2 days before for preliminary tests (I guess to see if I can stand anaesthesia) and the night before to nuclear medicine to have them inject tracer dye into the lymphatic duct closest to the tumor. The dye will then migrate to the node that most likely to be positive, they take that out and inspect it thoroughly. If it is 'clean', they leave the rest of my nodes alone. If it contains cancer cells, out go all my nodes. They count up all the bad ones and figure out my prognosis from that. But by ultrasound, they all looked good so there is only a 20% chance of the sentinel one being bad and unlikely that many are bad.

And I feel fine. Yesterday I relatively effortlessly ran 5 miles finally recovering from inactivity due to the broken arm and the hypothyroidism. Never mine that 5 miles used to be my 'short' run. I ran more than 4 miles today.

Baby Oliver is here. Very cute. I do hope I get to see him grow up and meet his potential cousins.


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