Others' blogs

I do spend a lot of my time reading how others have dealt with this disease. There are a few that I keep going back to-we try to encourage each other. Recently a young woman from Kansas with TNBC decided to quit chemo as it was beating up her body so badly. Her immune system was so damaged by the chemo that she had to be hospitalized several times to deal with horrific infections.
One of the best written is from a woman who had non-Hodgkin's lymphoma (seems to be in remission now-a cure) who refers to herself as "lymphopo' living in the House O'Horrible Tumors being treated at Our Lady of the Damned. Her blog is entitled ' As the Tumor Turns.' '(http://spinningtumor.blogspot.com/2007_01_01_archive.html)

A typical entry:
More than any other word on earth, the word I hate the most right now is "trouper." I despise the very concept, the mere idea that it's a even good thing to be. I loathe the pressure it puts on us to be so goddamn "brave," to be cheerful and upbeat and have a "positive attitude;" and, above all, to "fight."I'm not a trouper. I'm not brave, I'm not upbeat, I'm not a fighter. I spend an average of 2.75 hours every day crying. I cry so hard it sounds like I'm strangling, or drowning. I went to talk to a therapist, and she says I'm suffering from adjustment disorder and bereavement. Bereavement for my own lost self, the loss of the delicious life that I had worked so hard to create: the freedom, the independence, the strength, the vitality, the lust, the competence, the companionship, the dignity. All gone now . I hate what I've become. I hate what my life has turned into.And the only choices I seem to have are: suck it up and be a "trouper"; or bury my face in my pillow and sob.I say fuck the whole trouper business. Let them put this on my gravestone: "Her attitude stunk like day-old fecal matter, and we were afraid she would never ever ever EVER shut up with all that damn crying and whining. Praise Eternity!"

Sentiments felt by so many of us. Many blogs are filled with biblical passages. I tend to skip those as I can't come to grips with praying to stop the cancer. Did they not pray enough before they found out they had cancer? The scariest blogs are from those whose cancer has come back. How these people deal with such a scary situation is fascinating. Once BC has spread beyond the breast, it is generally thought that there is no stopping it-just maybe slowing it down. Maybe this next generation of tumor agents will actually stop it in its tracks so there is hope. I do spend a lot of my time reading in the case this happens to me (and sadly, it's not a remote possiblity) so I will have a plan of attack.

On another note, a funny term my son-in-law used to describe some of the drivers in Boston: Massholes. A masshole is one who makes left turns right in front of you when you have the right of way and sees your blinker as a signal to speed up so you can't change lanes. Of course these people are every where but seem to be concentrated in Boston.

Hair and teeth

I finally have enough hair not to worry about sun-burning my previously bald scalp while running. The ski hat can get toasty. However I don't have enough hair to comfortably go out in public. It looks like the haircuts favored in the early 60s for little boys. It feels nice and fuzzy-I must pat it several times an hour. My scalp no longer is so sensitive. Initially I couldn't stand under the shower as the pressure and heat were too much for it. Also I no longer sleep with a cap on as my fuzz keeps me warm. My wig is looking pretty ratty plus it messes with my glasses so I can't see as well. Maybe in a month I can retire it.

I've lost 3 toenails in the past couple of weeks-some of it due to running but mainly due to Taxol. Never lost a nail running before. My Mees' lines ( I had 4 sets) have finally grown out. If I'd cut my nails short, they would be gone.

I spent 2 not so fun hours at the dentist this morning. My molar split in 2 while I was doing chemo-mainly just a large filling fell out. Most of my molars are comprised of mainly fillings and each of them should be crowned. We'll see which lasts longer-the fillings or me.With my then sensitive gums, nausea, and low white blood counts, I figured that going to the dentist was out of the question. Just lately it began to hurt. Between the increased costs for insurance (5 fold!)co-pays, deductables and 2 crowns, our medical expenses are now a significant part of our income.

Weird cancer factoids: Somehow people with Down Syndrome rarely get cancer. They have extra copies of a gene that helps keep tumors from feeding themselves, Harvard researchers recently found.

A drug used sometimes in metastatic breast cancer, Xeloda, can erase fingerprints. In some parts of Asia, ones fingerprints are used to confirm identity but a cancer patient treated recently with Xeloda lost theirs completely and was detained by airport security.

About 180,000 women each year get breast cancer in the US. About 50,000 (2/7) will die. About 27,000 people will be diagnosed with triple negative breast cancer In contrast, there are only 1200 cases of primary brain lymphoma per year. This is what my brother-in-law had and has been symptom free now for 3 years against impossible odds.

Grad party pix

On our patio. My son Josh near the orange bowl. Absurdly obese me way in back

The Naomi Shrine. The collage was put together by the juinors on the Varsity Bball team

Naomi and Dontae in our living room. She likes to make this silly kissy face anytime a camera is near her

Dancing Oliver-unfortunately off by 90 degrees

I decided to take a day off yesterday from running. Even when I was in 'good' shape, I'd take off a day before a long run but I felt guilty nonetheless. Must..keep...running. As penance, I ran a 10K today (6.2 miles), the longest I've run in 2 years. Aside from making my legs sore, it was relatively easy. Lots of goldfinches out this year on my path.

We had one last visit from Shanna and her family yesterday. Oliver is so cute!!! They will return in about 8 weeks for a wedding and baptism.

Steve and I took a walk yesterday in the arb to the peony garden, which is in full bloom. Thousands of plants! Also we walked through this protected glen which has a micro-climate suitable for mountain laurel, rhodadendrons and azaeleas, which also are mainly in bloom. Generally the mountain laurel can only grow further south-I've never seen it any place else in Michigan but it is very pretty.

So my worry-the scar on my breast hurts and forms a hard ridge. I am hoping that this is normal. During the 2nd surgery, they took a big slice out where the first scar was to test it (it was benign). Recurrences tend to occur along incision sites (so I've read). Hopefully it was just the radiation that made it turn hard. Silly cancer. Most of the time I don't think about it coming back but it remains in the back of my mind. Maybe in 5 years, I can rest easy.

In our lower level, we have an unofficial 5th bedroom where our adult children (and spouses) have lived, Shanna being the last occupant. She left her sizeable party dress collection-the Size Two rack, we call it. Naomi has been eyeing this treasure trove hungerly but at the very least, she is a size 7-she is about 5 inches taller than Shanna and has much bigger bones. Naomi has lost some weight recently and thought maybe the larger ones would fit her. She was very thrilled to find some of them that did-new dresses for her- but didn't want to wear them for graduation as she was afraid Shanna would be angry.

Party aftermath

License plate courtesy of la mia amica Jeanette, one of the few fellow non-Italians I met in Gagliano although she is married to a man of Italian ancestory. The my friend. Silly Italian grammar rules although I think I can drop the article if the friend is named. I forgot.

No more PMS for me but I suffer from the fallout from the seemily constant PMS of a certain redhead. I have always heard of a 'redhead' personality and didn't give it much thought -sort of like astrology as if your personality is based on your hair color vs birth date but she doesn't do much to counteract this negative stereotype. She is currently zonked out with her friend in front of the TV in our lower level. I found all the leftovers from the party in front of them this morning. No putting of perishables in the refridgerator for them. After many warnings on what would be acceptable behavior on my part, I was allowed to meet the infamous Dontae. In case I couldn't remember my instructions, I was given warning glares when I spent too much time in his presence. Josh did speak to him for about 5 minutes so I will quiz him later. We were lucky to have very nice weather. The adults and Oliver could comfortably sit outside while Naomi's friends stayed inside. So thank-you friends for coming. I will post pictures later.

Graduation Open House

My second grandson at 19 weeks

Tonight we are having an open house for Naomi. Still not sure if I get to meet the boyfriend. I have been warned several times not to ask too many questions or to laugh too much. I am just so embarassing.

I went with Shanna to our hairdresser for her haircut. I haven't had a haircut since July and felt bad that my hairdresser was left to wonder what happened to me. She said how much she liked my hair and then I lifted my wig a little. Oh.

As for hair, I now have an inch on the top. It seems to form a ridge along the top of my skull-a mini mohawk. Also this ridge divides mostly white on one side and mostly dark brown on the other-a harlequin head. My lower lashes are all grown in and 3/4 of the uppers.

Still trying to carve a reasonable body from this blob of lard. Ever see a really fat person and think-if I was him or her, I would just do this and this and this and get into shape in no time. Well I am that person now and it isn't that much fun though I am making progress. I've dropped 10 lbs and ran almost 6 miles the other day. I no longer go into major oxygen debt going up minor hills and I am alot firmer-especially my legs.

I was looking at names of cancer blogs yesterday. My favorite: Living la vida leuko! apparently about leukemia. The Uniboob Club, Stolen Colon, What's up your Butt?, Chemopalooza, As the Tumor Turns, Cancer Bitch, and onebreastbouncing.

My break from trying to whip this house into order is over.

Graduation

Lots of grads-EMU Convocation Center

The grad

So she is done-Ms. Naomi- with Ann Arbor Public Schools and so am I. It has been almost 25 years since Shanna entered kindergarten in 1984. Naomi entered kindergarten just as Shanna started her senior year. It hasn't been an easy time as Naomi has a significant learning disability that didn't rear its head until she was in 2nd grade. As a pre-schooler she hit all those milestones on time or early. She was fairly articulate, read fluently, drew and wrote very well for her age. Great fine motor skills and exceptional gross motor skills- a good athlete at an early age. She seemed much more advanced than Josh at the same age (and he is a very bright, successful adult-honor student in engineering) so I assumed I had nothing to worry about except for her unusual crabbiness. But even as she was able to read out-loud much more fluently than many of her classmates, she could not recall, if asked, what she just read. She was fascinated with numbers-she memorized long lists of phone numbers and addresses though not with the street names and could memorize a long list of spelling words quickly. She could not tell you what any of the words meant however. By 4th grade, she was falling way behind and I wanted intervention. It was very difficult getting an IEP for her as her disability seemed so unusual. Plus they were defining a disability as a huge difference between ability and performance and they were arguing she had no ability i.e. she was mentally handicapped. But she had pockets of ability-fairly high math skills so they couldn't really say that. Indeed, we had her in the higher math track in high school for a while and the personnel who were assigned to help her had less ability than her-presumably college graduates. For lack of a better classification-they said she had language processing disorder-both written and oral. She could not make inferences. She understands only literal language. A sample from an elementary school story problem:

Ms. Smith's class has 25 students. Fifteen of them are boys. How many pupils are girls?

Most 4th graders could handle this even if they didn't know that 'pupils' are another name for students-they could infer that. Naomi couldn't. She was confused and thought pupils had something to do with eyes and didn't know how that could fit in. Also if there was a piece of unnecessary information like 'Room 204 has 25 students ', she would somehow work the number 204 into the equation.

As time went on, the gap between her performance and her classmates became larger. As they kept repeating last night, Huron is ranked the number one academic high school in the state. I assume this is based on standardized tests, number of AP classes and the performances on the AP tests, etc. This makes the gap seem even larger. I have since noticed that her ACT score is about average if you compare it with other high schools' (other than Ann Arbor's) averages. They are fairly good at dealing with high ability students-plenty of them coming from very educated households-of course these kids teach themselves, but to deal with Naomi is another story. At best, she was given extra time on tests and I was able to intervene when teachers' instructions were not crystal clear-a big problem as Naomi misinterprets what seems obvious to everyone else. I also could pull her out of a class that proved unsuitable for her. I am trying to expand her limited vocabulary. She asks me constantly what does this and that mean. She is now reading for pleasure and has come a long way but there still is much more work to be done.

Shanna and her family drove 14 hours to be at the ceremony. As she is 26 weeks pregnant, she needed to stop to walk and Oliver gets very antsy confined to a carseat for so long. It was fun seeing him again.

After the very long ceremony, we all- Josh and Julia, Shanna, Oliver, Ramy, Steve, Naomi and I, went out to eat. Naomi was to go to the school's post-graduation party but got lost trying to find it (like everyone except myself in the family, she is directionally impaired) and decided to stay with a friend instead-hopefully the friend she said she was going to be with-we are having some trust issues now.

Back in CancerWorld, the ASCO meeting is going on in Orlando where all the latest cancer news is being presented. I haven't finished poring over the many abstracts with nuggets of info about TNBC (see http://abstractsearch.asco.org/?index=442064&calln=7&lastq=&sortsel=rel&opt=ANY&doc0=60&query=triple+negative+breast+cancer)

The biggest news that made its way into the mainstream news was the effectiveness of the PARP inhibitors against metastatic TNBC. In one case, they caused a cure. But I was trying by reading over the numerous abstracts to answer a few questions I have about this awful disease. They all start with that scary introduction, you know the one, with words like 'deadly' 'very poor prognoses' 'no targeted treatment'. I just have to plow past those heart stopping words and get to the messages, which are very mixed. Some examples:

1. No differences in survival in TNBC for chemo vs no chemo for Stage I patients. (with all their farting around, I went from Stage 1 to Stage 2. Thanks for that)

2. Where do mets first occur for TNBC? Lungs: 36% Liver 11% Brain: 11% Bone: 19% Skin 9.7%

Scariest of course, is the brain

3. Median time to distal (vs local) recurrences: 2.6 years Median time to death 4.2 years. All of this I assume is from the time of first diagnoses.

4. Asian TNBC patients have a more benign course of the disease than patients of other ethnicities-especially African Americans.

5. Numerous tumor markers predictive of prognosis-I've must have seen at least 25 different ones. The one that stands out are the Kis-the proliferative index. If this is high, bad news.

6.The tumor marker CAx (forgot the number) that rises with metastatic estrogen driven BC, does not rise at all with TNBC nor is elevated in the early stages. So much for trying to track the disease.

7. One research group developed a nonogram for predicting negative outcomes. Increased age of patient led to 'better' outcomes. Good for me.

This wasn't in the TNBC abstracts but on TV, they showed how one group at Mass General takes the patients tumor and studies its genetic background and tumor markers before deciding on treatment. They showed a 48 old lung cancer patient (non-smoker-they always like to include that info for some reason like you don't deserve any compassion if you smoked and got lung cancer) whose tumor was filling up her lungs quickly. They discovered some defect in its DNA similar to a skin cancer defect and gave her the chemo suitable for skin cancer. Tumor went away and the patient is thriving.

Lots of stuff that I don't have enough time to suss out. I need to be dealing with the graduation party and some other stuff instead.

Clutter

I do have a hard time throwing things out. I have numerous tubes of lipstick that have enough for one application if I somehow find tools to extract that, crossword puzzles that are a few clues from being finished, clothes that fit me 40 lbs ago that I hope to fit into again someday, etc. I've been trying to throw out at least one useless object a day.

Yesterday was a good lesson on what happens when hoarding gets out of hand. In the condo complex on the otherside of the road from our subdivision, an elderly woman who uses a walker, stuffed her condo to the gills with objects that she couldn't bear to throw out. Newspapers and magazines were piled all over the place. I am not sure how the fire started but it took them forever to get it under control. She was rescued. I guess her clutter problem is now gone for now. These are attached condos so there was the danger of it spreading to the neighbors', who were not amused by the side effect of this hoarding. Although we live a half mile from this condo, the smoke filled our house. Most of the Ann Arbor City and Township fire trucks seemed to be there. When the ambulances started coming, Naomi wondered if Morgan's water didn't break or something (she lives in the complex too) but then we smelled the smoke.

My parents were hoarders and had a large house so it was fun dealing with that when my father died. Unfortunately, in this house was a squatter who was a hoarder also. Many of the objects we had thrown in the dumpster he managed to retrieve in the 2 months it took to get him evicted and the house had to be emptied of trash again. It still amazes me that somehow he had 'tenant rights' because my father had invited him in (and then wanted him out). Lessons learned: Be careful who you let in your house and don't hoard.

So I probably won't die of this evil disease and should make plans for my life. Up to now, my attitude has been, don't worry about it until you have to. If you think you are going to die, worries about disappearing 401Ks seem to take a backseat.

In the near term, Naomi is graduating tomorrow. Shanna and her family will soon start the long drive out here ( I am always nervous when any of the kids are out driving). I wanted to have a party for her Saturday but Naomi insists on going to this Motor City Jamfest so Friday evening it is. Naomi still hasn't let me meet Dontae as I am so embarassing and can't be trusted not to ask too many questions. I reminded her that the other kids had their high school sweethearts on family vacations with us and both of them had moved in with us at various time. (Josh's high school sweetheart is now his wife Julia). Dontae does want to come Friday though so maybe I will get to meet him. Naomi thinks she is going to marry him but she is very immature and really isn't prepared to deal with many aspects of life. My short term goal is to work on that. I had taken her cell phone away as she couldn't find a way otherwise to limit her texting. I was soon getting messages from her from a friend's cellphone. Whose phone is this? Oh Monica's. Hmmmm, this seems to be the same number that you speak to every night for an hour, you sure it isn't Dontae's? She finally admitted that she had Dontae's cellphone now but she was not with Dontae. Now she can't have sleepovers anymore either. Note to liars everywhere-don't lie when you can be caught so easily.

The cool weather makes it easy to run. I am now running more than I did before the cancerfest started but I was having trouble with my thyroid levels last year. It is amazing how much drugs interact with each other. I had taken the same amount of thyroid replacement for years but last year it turned out not to be enough and my TSH levels shot up (the more TSH, the more HYPO thyroid you are-I have no thyroid-it was ablated with radioactive iodine as it produced too much hormone due to Graves' Disease). Due to my broken arm, after I was deprived of narcotics, I relied on ibuprofen to stop the pain. This lead to heartburn which led to me consuming lots of rolaids (calcium) which ties up the thyroid hormone I take, which led to being hypo. The pain went away, I stopped the ibuprofen and the stomach repaired and I needed less rolaids. I did have the onc check my thyroid levels before taking Adriamycin. Too much thyroid can damage the heart and I didn't want that to happen while possibly damaging my heart with the Red Devil too. The test results were mixed. Low levels of TSH which indicated too much hormone but the hormone levels themselves seemed to be low. I am waiting to be retested by my primary (who I should fire at some point). I am guessing I am OK as I recover so quickly from my runs.

Still no hair excepting the fuzz. Shanna has made an appointment with our haircutter during her visit here this week. I haven't seen our haircutter since July, who probably has wondered what has happened to me. That mystery will be solved for her soon.