Chanukat HaBayit

I just returned from Martha's Chanukat HaBayit which is the ceremony one has after affixing mezuzahs (don't know the correct plural- mezuzim?)to the doorposts to a new place of residence. Of course Martha's mom told her that this is how the Nazis know where you live but she ignored that. But it was an interesting ritual. It turns out that her new neighbor is a woman who lived with us many years ago-one who I didn't get along with then- but someone who seemed thrilled to see me nonetheless.

It remains cool and sunny-a nice day to run. I saw a bird that I couldn't identify-orange with black wings. I can't remember what the head looked like. It was just slightly larger than a finch but too small to be a Baltimore Oriole. Possibly an orangish looking scarlet tanger? I try to remember as many features as possible when I see an unusual bird but forget them as soon as I have access to a field guide. In my yard, I have two pairs of cardinals and the males always seem to be dueling with their loud songs. I have at least 3 robin families. I haven't heard the chimney swifts in my chimney but they definitely circle around the house. Plenty of food for them this year with all the bugs.
Naomi is at her friend's baby shower. How quickly do they grow up! We went shopping for her yesterday. From her registry, it seems that she is planning to nurse, a rarity among very young mothers. Good for her.

In cancer news, they seem to have found some new drugs that target an enzyme particular to BRAC1 cancers that may work for other TNBC too-PARP inhibitors. http://www.reuters.com/article/marketsNews/idUSN3044166420090531?pageNumber=2&virtualBrandChannel=0
In Quebec, they just discovered that there is a greater than 10% error rate in testing hormone receptors in breast cancer so many women there did not get the proper treatment. Hopefully this is not true for the rest of the provinces (I have readers from Ontario, Manitoba and Alberta)!!! Also a new study shows that antidepressants interfere with Tamoxifen increasing the recurrence rates in women taking both drugs. No Tamoxifen for me though.

A website I found useful is from a TNBC survivor Pat who currently is writing a book on TNBC. She provided many links to studies-http://hormonenegative.blogspot.com/2009/02/surviving-triple-negative-breast-cancer.html that some might find useful.

How I keep busy

I haven't forgot about my blessings. They are many and I am keeping a list so I don't leave anything out but I will leave that for another day.

We've had nice cool weather here this week-good for gardening and running. I finally finished making my container gardens. I love watching things grow. Unfortunately the weeds have been growing too. I filled up the huge vegetation recycling bin Thursday with unwanted growth.

For those of you on Facebook, Shanna posted another video of Oliver dancing. Very cute. They will be here Wednesday for Naomi's graduation. Naomi has been difficult. This is the second month in a row that she went way over texting and as warned, we took her phone away for a week. Tomorrow she is going to a babyshower for her classmate who won't turn 18 for another few months. She's keeping the little boy.

So for May, I've run 100 miles. For the past 6 years, this has been my goal but the broken arm, then hypothyroidism and then CANCER got in the way. It has become much easier than a month before but I am still very slow. As the weight goes away, hopefully I will be a little faster.

Cancerland memories

It's been more than 5 weeks now since I've been out of treatment and almost 9 months since I have entered Cancerland. I've blogged faithfully but much of time has been a blur to me. I do have a few distinct memories however.

1) The feeling of dread right before my mammogram appt. I suddenly had the realization that up to that point of time, I'd been lucky but I knew I was about to find out that I'm not immortal. I had no symptoms nor could I feel the lump (hopefully soft lumps have better prognoses than hard ones-I've read accounts of them 'softening" as they disappear) but I was not surprised when I was told that I probably had cancer.

2) The bitchiness of the radiologist who told me about my tumor. It was late in the day and I was a chore to deal with. Every question I asked exasperated her as how could I be so stupid. She has the suckiest bedside manner bar none. With her was a resident she was training. You'd think she'd have better behavior. I wish I remembered her name. All I remember is her bad perm and even worse attitude. I know it is mean to wish cancer on anyone but she'd be my top candidate to get it and I would want her to find out with the physician sighing the whole time as she receives such devastating news.

3) The paper punch sound of the gun extracting little pieces of vermicelli from my breast. The biopsied pieces looked like strings of fat-benign. But a few days later, I find out their true evil-Grade 3-the worse grade given due to a combination of fast growth and cells undifferentiated.

4) Finding out the tumor was triple negative. I had just assumed I'd have my mom's cancer. (ER+, non-aggressive) Chemo for sure. Instead of a 3 month ordeal, I was in for at least 7 months.

5) Reading about TNBC on the internet. Reading things like no targetted treatment-very poor prognosis, etc. Ended up thinking that instead of a few months of inconvenience, I was in a battle for my life that I didn't think I could win. I was filled with dispair. People's empty promises of 'everything was going to be all right' just made me lonelier.

6) Peeing bright blue from the sentinel node dye. The sentinel node procedure really has saved women a lot of misery. They take out 1-3 nodes instead of the whole bunch (usually around 20)so I would be spared lymphedema. And the nodes were clean-good news but the rogue cells could still travel in the blood stream to spread 50% of the time with a tumor my size and grade. My regimen of chemo would kill them 50% of the time leaving me with an overall 70% chance of survival (could be killed by cancer in the next 10 years 25%, by some other means 5%)
I later find out that the database used to generate these sad numbers isn't perfect and my numbers should be better. Still scary. Even being told that you have a 95% chance of surviving means that in 1 in 20 cases, you lose.

7) Trying to run after my surgery without damaging my breast. I actually ran holding it still and stopping if someone drove by.

8) Have 2 wires placed for the re-incission. I was not fully numbed so the deeply placed wire hurt like you wouldn't believe. My tumor had doubled in size in the month between diagnosis and surgery so I had bad margins. Also a new tumor was found and lots of suspicious calcifications. After the first surgery, my breast was roughly the same size but after the second surgery, it became 30% smaller than the left, but no cancer cells were found this time.

9) The terror of having the Adriamycin syringed into my iv line-letting myself be poisoned. Ten weeks of altered tastebuds-could no longer stand chocolate, sweet things or coffee. Salty, cheesy things-good. I never threw up but seemed to be queasy constantly no matter what I took. This lasted until about my second Taxol treatment.

10) The sadness of losing my hair. On Day 16, my scalp was burning and my hair felt heavy. As I combed it, large amounts of it ended up in my comb. By Day 18, almost all of it was gone leaving just a few stray strands. I had cut it shorter so the weight wouldn't hurt my head so much and it wouldn't tangle but even when it was only 2 inches long, it still tangled and hurt. I looked so pathetic-like a sad, old man. I still only have less than an inch of hair.

11) Trying to exercise. I actually ran the day after the first AC and didn't feel differently. But as time went on, I was able to run less and less and soon walking made me out of breath. I went into hibernation for 4 months going out for bball games but mainly staying home. Steve took care of food and most of the housework. I just lay around like a beached whale.

12) Having Steve shoot Neulasta into my belly a day after the infusions at $4000-$7000 a dose so my white blood counts would remain high. This worked less and less as time went on and they are still low. I never had an infection however.

13)Taxol induced neuropathy. The pain of every muscle fiber feeling inflamed in my thighs and finding it impossible to get comfortable. Heavy doses of meds ameliorated this but sent my liver enzymes out of whack.

14) The strange feeling of having it feel that your fingernails could fall off any second. The nailbeds tingled. Just yesterday, I lost 2 toenails though running probably caused this along with the Taxol. I kept my fingernails though they had 4 distinct Mees' lines on them-only the last Mees' line is still visible as the damage has mostly grown out.

15) Losing my eyelashes and eyebrows 6 weeks AFTER my last chemo. I kept telling myself-at least I still have those but no, they fell out. I wanted to just hide. Pencilling them in just doesn't look right. They are mostly back.

16) The annoyance of waiting in the rad waiting room not knowing their system. I would be furious when people who I know had later appointments went in before me. Having to lie absolutely still while they took all of these pre-treatment x-rays. The eeriness of knowing you are being bombarded by tissue destroying radiation. Such a primitive treatment. Having my one arm pit turn almost black from the treatment. The skin has since peeled off and it just looks like I have a tan.

Yep-these are mostly negative memories but I do have plenty of blessings too that I will write about in a later post.

I'm back!

One of the cancer patients who took LiveStrong last session wears a T-shirt saying "I'm back" for her workouts. I like it. The other last session participant who has bone mets hasn't been there for a while. Hope she's OK. Everyone in our class except the colon cancer lady has had hair loss. We compare hair growth like the 6 year olds in my Brownie troop compared tooth loss 24 years ago. Mary thought her growth had stopped but I pointed out that since it is coming in in curls, it just makes it look shorter. She said her hair was straight as could be before this cancerfest. Marilyn says now mine is longer than hers but says she can't wear her wig as her new hair, a different color sticks out. Lyle, the man, has the longest hair and said he won't cut it again. It's very thick for a 60 year old man. Losing his precious hair he said was the hardest for him. My hair is still too short to see if I'll get chemo curls. I've been running out in the sticks (we are at the edge of town)so less people will see my baldness. Also I have expanded my range as my endurance increases-new record for the year today. Yay me.

So am I really back? Not completely even as I can do more running and weight lifting. I certainly don't look or feel the same. This facing one's possible early death has been really hard on me. Fortunately I really don't think about it so much and live in the possible fantasy that, except for check-ups, I am done with this.

Naomi was to pick up her cap and gown today. She called in tears saying they won't give it to her until she forks over $57 for a textbook that she allegedly checked out 2 weeks ago. It was a first year Spanish book-she took the class in 8th grade. I was furious leaving messages with every administrator (noone ever answers their phone) about their faulty system. Anyway, I had paid for this silly gown already-how can they withhold it? Finally the book depository lady relented and released Naomi from her 'obligation' as numerous other kids were of accused of the same crime-taking out a Spanish book.

Finally we have hot water although the installers aren't completely finished with us. So many things need to be replaced. Good thing my sweat glands still aren't functional. Such a weird side effect-one not mentioned in all the literature but other people have noticed it in themselves too.

Second guessing

I realize second guessing is futile; you can't go back in time. But it is very hard not to when your life is on the line, did I do the right thing(s)?

Chemo timing: Should have started as early as possible with this very aggressive tumor I had. Delayed by 2 surgeries and the onc saying I should have a chemo-free Thanksgiving off-handedly saying delaying 2 weeks wouldn't make a difference. Of course no proof that it wouldn't make a difference.

Right chemo(?): I received the current 'standard treatment' for TNBC: Dose dense 4xAC, 4xtaxol. If one looks on the TNBC foundation pages, this is what women in my position are given. But was it the most effective? Current literature suggests otherwise. See http://www.abstract.asco.org/AbstView_65_35150.html and http://www.breastcancer.org/treatment/chemotherapy/new_research/20090429b.jsp . In summary, for TNBC and/or her2 neg cancers, Adriamycin doesn't do squat unless you have this TOPO2 defect, which is associated primarily with her2 positive cancers. Also the old regimen of cytoxan, methotrexate and 5-fluorouracil (CMF)was more effective for overall survival than the current TAC. Why did they switch? Because for breast cancer in GENERAL, TAC gave better outcomes, but for TNBC specifically, not so much. What might be better? Carboplatin or cis-platin. Numerous papers abound saying its effective in BRAC1 breast cancer (almost all TNBC). Not all TNBC are BRAC1-probably not me (no history and I am 'old'). If one has a large tumor (loosely define as 3 cm or larger depending on your breast size), they sometimes give you chemo before surgery to see a) the chemo is effective b) to shrink the tumor so it won't be such a large portion of your breast. On the TNBC forums, I noticed several women whose tumor didn't shrink with Adriamycin but did once they switched to carboplatin.

Breast 'conservation' or mastectomy: So I was told that overall survival is the same whether I had a mastectomy or lumpectomy + radiation. This is true for BC in general but is it true for TNBC? Who knows? If I had the BRAC1 gene, they for sure would say mastectomy but is my tumor different than the ones that the BRAC1 women get? I sure hope it is!!! Also, my decision was made when I was told I had a small tumor. By the time they got around to removing it, it had doubled in size (linear dimensions which of course mean its volume went up 8-fold) and doubled in number so I needed 2 surgeries. By this delay I went from Stage 1 to Stage 2 with an increased poor prognosis. Also numerous cases I read from my blogging friends along the lines of this: it's a good thing I agreed to a mastectomy because they discovered this additional tumor-sometimes in the opposite breast. But in my favor, hopefully, these hidden tumors were mostly in young women with dense breasts that can hide all sorts of stuff.

I am taking a day off from running but will go to LiveStrong and use different muscles. I still have a numb area in the soles of both feet. Peripheral neuropathy due to Taxol? Running injury?
Early sign of MS or brain tumor?

Still no hot water. Hopefully the installers can fit us in today.

Endorphins

Aside from giving me healthy lungs and muscle tone, running gives me endorphins. They seem to be of two varieties, short-lived that disappear within a minute of stopping and ones that last for a few hours after. The short-lived ones taking 2 minutes to kick in let me overlook post-surgical pain, early pregnancy breast pain, menstrual cramps, bra burn, shorts burn, too tight shoes. The first two minutes of running aren't fun and I dread them but then I get into a zone. When I ran my first marathon, I really pushed myself and I was probably way undertrained but I managed to make my goal and was very happy to see that finish line. I walked through the chute for about a minute and then I was struck with over-whelming pain and fatigue that my good mood couldn't stop. Those short-lived endorphins had faded. But I continue to feel relaxed and good about myself for a few hours later.

I've been running alot and I seem to be smaller. The weather has been cool in the morning-perfect for running. I've been adding to my gardens and solar light collection. My seedling experiment was a disaster so I ended up buying the plants that I tried to grow from seed. I think only the morning glories will have survived.

So a low key weekend. We had a barbeque at Josh's and I've been seeing friends on the other days.

Our crisis du jour is a kaput water heater. No hot water until tomorrow! I will have to sponge myself clean I guess.

Dude, where's my white blood cells?

Shanna and Naomi 12 years ago before Shanna's prom. Naomi: age 6. Now Naomi towers over her.

It was Naomi's last day of high school yesterday though a project remains unfinished. I get a break from overseeing homework for a while so less stress for me. Yay! The graduation ceremony is in 10 days. Shanna is still planning to drive out to it but won't stay here-she's staying with the in-laws.

In connection with the chemobrain study, they sent me the result of my blood work. Less FSH. High FSH levels are associated with hot flashes but they gradually stop after a while. Thankfully I haven't had much trouble with hot flashes since I threw the Prem-pro away thinking that it gave me cancer. My red blood count climbed, not as high as before but above what they were when I was pre-menopausal but the white blood count sunk lower than it was on chemo. True I skipped the last Neulasta and maybe radiation screws up the white count but it should have returned. Monocytes are high though-inflammmation? infection?

Running still is fairly easy. I worry about stress fractures if I increase too much. Also part of the sole of one foot is numb-residual Taxol induced nerve damage? Or running injury? But as it is numb, no pain.

One of the moms came over for a pleasant evening on the patio before those pesky mosquitoes came out. It hasn't rained in 5 days but all the rain before has made these things really annoying. I had to cut short my walk in the woods today after running as they were so bad.

More readings from the TNBC page: An article saying that bis-phosphonates (such as Zometa, Evista, etc) cut down on recurrences for hormone negs more than for hormone pos--just the opposite of what I read before. Small patient population so I will ignore it.
More annoying: some article about triple negative bc in general saying that only occasionally does chemotherapy work-most of the time it doesn't so too bad for us. I won't even cite this article-it is from the 'popular press'. Hopefully the newly diagnosed do not run into this type of article because it will depress them.

Bald

Going through my friend's family files the other day (our families were close friends) I found a bald picture of myself. I had bonnets on in all the pictures I'd seen before. Sadly I don't have much more hair now.

I've been busy doing yardwork. Still lots to be done. Running is becoming easier. Back in March, it was an effort to run for more than 2 minutes at a time without having to stop gasping for breath so I guess that's some progress. I'm able to lift more weights in the LiveStrong program. The formerly fat trainer brought in pictures yesterday of her former self to prove to me she was once large. She is in very good shape now. I said I should bring pictures of myself when I was thin and had hair. My house now smells of lilies of the valley. Thanks Marilyn!

Chemo Brain study-phase 2

Finally they got the fMRI up and running for the chemo brain study. Maybe. Towards the end, there was a lot of noise in the image and the operator blamed my wig even though I really don't think it has metal in it. But bad news for them, their control had the noise in it too. Still no brain tumors, my biggest fear. So I am to go there 3 times total. Once before chemo, then right after chemo (now) and then a year later. They have these annoying tests for recognition and reaction time. The MRI shows the pathways your brain uses to do their tasks. I agreed to do this only if I get to see the results. They have 3 sets of patients: BC with no chemo, BC with chemo and non-BC people. I barely fit into the throbbing machine. They gave me goggles with my prescription in it but it was off and gave me a headache as the images were blurry. They are also checking my FSH levels (inversely proportional to estrogen) to see if any confusion is due to menopause. Afterword, I went to the lab for blood work, which was initially refused as there was no physician's name on the req, but eventually that was striaghtened out. The blood drawer in passing asked what I was doing later that day and I said something about the LiveStrong program and she perked up. She must be all of 25 but she has a brother who just finished lymphoma treatment (for the 2nd time!!!) who would love a free program such as that.

As I sat with my coffee early this morning on my patio and my fresh raspberries-thanks to M, a male hummingbird (haven't seen one here in a long time-I thought I just have 2 females) decided to check out my bright pink hat. He came inches from my face flitting side-to side investigating. They seem quite fearless.

Did some planting yesterday but have a lot more to do before I am satisfied. 2 of the 3 calla lily tubers  have sent out shoots. We'll see how long it takes for them to turn into plants with flowers.

Chimney Swifts

They're back, my little house guests. I hear them twittering away although I haven't heard them in my chimney yet. These birds, described as flying cigars, are interesting.They show up around now, nest in my chimney and in mid-August, fly down to Peru for the winter. They presumably have the longest migration path of any bird. Two years ago I had a flock of 3 couples. I don't know if the kids join them. I keep meaning to put a cap on the chimney but thanks to cancer, I forgot about them. They can not land on horizontal objects, just vertical walls. They fly in a flock high in the sky constantly communicating to each other as they hunt insects-twittering. Back in the nest, they communicate all night--loudly. It drove Shanna crazy when she stayed in our room downstairs.

Someone had told me that the personal trainer that works with us at the Y used to be obese and was featured in Shape magazine-before and after. This is a very tiny woman, a marathoner who qualified for Boston during hurricane strength winds in Tampa this year. I couldn't imagine 50 extra lbs on her. But she told me, yes indeed, she was chunky but has kept it off for 8 years. I am able to do more and more at the Y and today ran even farther than this weekend. Still too much of me to love and the pounds are not flying off like I hoped. I am firming up though and have lost alot of that gut. I ran out in the country today with my hat off (toasty here today). I am not sure if my transparent hair can stop sunburn though. Still too short for me to see if I am getting chemo curls.

Last night I helped a friend sort through her family history. She has to prove that a certain relative was legally adopted so she can claim an inheritance. While going through lots of papers, she learned alot about a different relative who was never discussed while she was growing up. We were able to piece together this sad individual's life.

I got a few flowers today at the Farmer's market-just enough to get my patio back in bloom.

Rock garden

My pal Renee in Seattle who recently did the Relay for Life out there is pictured here with some of her luminaries. I'm sharing one with Holly in CA. Next to us is Sharon in MD who I hope gets over her writer's block soon! Renee had TNBC and alerted me to the 3 week rad treatment.

My rock garden with creeping phlox all over the place and some primroses on the top center. Spent some time yesterday trying to groom it giving less invasive plants a chance to grow. In the summer, the phlox is replaced by lots of CA poppies

I am gradually making a dent in my to-do list. I was able to run quite well even though I overdid it the day before. I take Tuesdays and Thursdays off as those are the days of my LiveStrong class where I try to work out different muscles. I took care of some nagging financial matters that I kept putting off, finally cut Spud's overgrown nails, miserable for both of us and helped Naomi finish her final government project. Last week of school!

I used to have a giant silver maple where my rock garden is but its invasive roots destroyed our plumbing and was threatening our foundation. We had it cut down almost 9 years ago leaving an ugly stump. When our patio was redone a few years back, I had them put all the dirt they dug out on top of the stump and terraced it with big hunks of Michigan granite. (our county's number one natural resource-gravel) I tried to put plants of different textures-various mosses, sedums.

Until yesterday, none of these rocks were visible and certain plants were crowding out the slow growers. Still I have too much sedums and creeping phlox.

Aside from pruning the rock garden (not a true rock garden-we don't have the porous volcanic rock here that you folks have in Seattle for yours), I had to prune my face. In the past 2 weeks, I

went from not having a single hair on my face (no eyebrows, eyelashes, or facial hair) to werewolf lady. By eyebrows, I mean the entire region between my eyelids and forehead. I've been having to hack a painful path to give myself something that appears to be normal eyebrows. I am grateful to have most of my eyelashes back. It is so hard to feel attractive or even moderately presentable with bald eyes. And the facial hair was just gross.

Yet with all this facial follicle activity, the head hair seems to have stopped at a half inch of fuzz. I see little tiny hairs on my arms and had to shave a patch of about ten hairs from my pits. Nothing on the legs-that can stay that way and I don't need those apocrine glands either.

It is amazing how long the effects of chemo last. It has been 10 weeks since my last dose. In the TNBC news section, there was an article that said that Adriamycin does nothing for TNBC according to this meta-analysis in Italy. On the surface, it said that Adriamycin had increased survival for estrogen negative women in general but when they sorted out who was her2 neg or her2 pos, only the her2 pos were helped. Nice to know that I poisoned myself for no reason.

Articles like this were out when I was trying to decide what to do. I had discussed this with my onc and she acknowledged that Adriamycin's usefulness was very controversial but it was considered the standard of care. Taxol's benefit seems less debatable. Another area that I keep second guessing myself was agreeing to 'breast conservation' when TNBC recurrence rate is so much higher. She kept stressing that survival rates for breast conservation plus radiation were equal to that of mastectomy but I think that is for breast cancer in general, not TNBC specifically. I can not find the stats for TNBC but for those who have the BRAC1 gene (who mostly have TNBC)they recommend mastectomy. Not all TNBC is equal. I am holding on to the straw that it is less aggressive in older white women who don't have the gene.

Frost

Generally the last frost around here is considered to be May 15. But it is May 18, and what do we have? Frost. I did plant some of my seedlings. Hopefully they weren't frozen to death. My hummingbird made an appearance Saturday checking out my flowers. Slim pickings my little friend-just some petunias for you.
When I was sitting in the mall waiting for Naomi and her beauty treatments the other day, a mother with twin newborns sat near me trying to feed one baby while the other cried. She also had a two year old who tried to dislodge the one baby and crawl onto mamma's lap. He is older than what Oliver will be when the new baby is born.
I tried to make up yesterday for Saturday's sloth by extending my run to more than 5 miles picking up a painful case of bra burn even though precautions were made. I started my running career before nylon shorts were invented wearing cotton shorts with rolled edges instead. Those cotton edges would turn into razors after a few miles. Fortunately running tights were invented by the time I ran my first marathon.
It was cool and sunny-a good day for exercise. After my run, I went for a 2 hour walk in the Arb with my son and his shepherd Sunny as their house turned into wedding shower central. Josh and I are good buddies. Lots of pretty wildflowers.

Prom pix

Naomi with her artificial tan, which fortunately faded quite a bit. I thought she'd look nicer in a colored dress but black and silver seemed to work for her. She has "cinderella slippers" tied up her calves

Girls outside of limo

Outside our house

Naomi and Neway inside limo

Naomi and Neway outside Carmel's house

Some of the girls

Half of the couples

The boys outside limo


So the big day finally arrived. She and her friend Carmel have been planning for this for months. Naomi's boyfriend is too old for proms so she asked her friend Neway to ask her (pronounced-New way, not No way as I originally thought). Huron High is a very diverse school and their group reflected it: Asian, Hispanic, Arab, African, African-American, etc. Naomi in stocking feet is 5'10 but with heels, is well over 6 feet. She spent alot of the pre-prom picture taking scrunching down, which drove me crazy. Neway was a very sweet boy. One of her friend's names is believe it or not, Tata, who is Thai. Lots of parents assembled to take the pre-prom pictures while they waited for the group to assemble. They were still waiting for at least one couple when I left. The plan was to eat in a restaurant 25 miles away and then go to the prom. The girls were all beautiful with their fancy dresses. It was fun oohing and aahing over this rite of passage. Naomi still isn't home. I am hoping she skipped the post prom party in a hotel room and went home with her friend.

I was so busy driving Naomi to this place or that, I didn't get to run yesterday. It almost froze last night so we took some of the plants in. Hopefully my seedlings I planted survived. A cold wind suddenly came through while they were taking their pictures messing up the hair-dos and making it uncomfortable for the girls in their skimpy gowns. Julia, my daughter-in-law is having her wedding shower today for her best friend so Sunny, the German Shepherd, has been exiled to over here.

Prom

I will add more pictures later. The past few weeks Naomi has been obsessed with the prom. Numerous hours were spent looking for the dress, plotting and planning etc. She had a tan sprayed on the other day. Much to her disappointment, it has washed off quite a bit. This morning we went to a classmate's girlfriend's house for the 1.5h hairstyle. Naomi's hair is very thick so it took a long time to put it in ringlets. The girl who did it is a high school student but won a state competion in hair design. Her mom kept referring to her as a 'miracle'baby. I was thinking that she was conceived at a late age (the mom looked much older than me) or was a preemie but no, they adopted her from a Romanian orphanage. She took lots of pictures of Naomi's hair to add to her portfolio. Then it was off to the mall for nails, which took forever.

In a few hours, it will be time for group pix, the limo ride, dinner, and then the prom.

Her car priveleges have been taken away but this means I have to chauffeur her all over the place. I got a call from her counsellor about her absences. News to me. She still insists she has been in every class every day-one of those 'who do you believe, me or your lying eyes' situations. All the grades have to be raised and she was stuck in the house last night doing projects.

During chemo, my molar split in two leaving a very sharp edge. For a week, I had a sore on my tongue from being cut on the sharp edge. The tongue healed and I manage to avoid getting cut further but meanwhile the tooth has decayed according to my dentist. Plus my gums were left in bad shape from the chemo so my visit yesterday was no fun. Now I have bug bites all over my face. Everytime I try to tend my rock garden, a cloud of insects flies out and stings my face. And for some reason, one of my eyes is all swollen. Yep I look just great.

I've been sad alot in the last few days. When one is in cancerland, one can't wait to leave it but then one finds, not much has changed. Naomi is a very difficult child to parent. It is so hard trying to get her on the right track. Plus something an in-law said about me really hurt me and I have hardly heard from any of my friends. All the makings of a pity party.

Friday blahs

Things are not going well even as my health slowly returns. I am so disappointed with Naomi right now that I can't think straight.

Cancer dream

I dreamt last night that my cancer had spread to my shin bone and my leg was amputated leaving a smooth stump. I had forgotten when they had cut my leg off and I was thinking that recently I had been running and how could I have done this with one leg? Also I kept going up to people to have them feel my stump and to try to make them feel sorry for me.

As usual the dream wasn't too realistic but I know what set it off. I went to a nutrition class yesterday with Marilyn at the Wellness Center-the subject being grains. There were eleven of us who introduced ourselves giving a brief background of our cancer history. Seven of us had breast cancer including the instructor-the others were brain tumor, pancreatic, and colon with liver mets (scary) and 2 non-patients. I had met all the breast cancer people before in one place or another (excepting the instructor). One of the participants has sat in on our LiveStrong class. She had been in the previous session but was invited to stretch with us as we had so many drop-outs and have room. She looks very healthy with a full head of hair etc. She started in with her intro about having breast cancer 7 years ago..and I think to myself that she's a little bit too healthy to be with us and I am already pissed at her anyway as she spends alot of time on the weight machines during OUR class time and I spend alot of time waiting because of her, blah, blah, blah...and then she adds but now it is back in my femur and I am Stage 4.

Oh.

So many things wrong with my dream other than the obvious forgetting my leg was amputated. Can't I dream medically correctly? Rarely do they amputate limbs in bone mets. If it is in one bone, it is probably in another so they treat systemically. Also bone mets rarely appear below the knees or elbows, which is good because I am more likely to feel pain in my shins or feet due to running and in the future I would like to think that any pain I feel there is probably due to running and not mets.

As for nutrition, I really have to mend my ways if I want to avoid mets. Strangely obesity is not an issue for recurrence in estrogen positive BC. I would think it would be as fat cells themselves produce estrogen. It certainly is a risk factor in getting estrogen positive BC in the first place. But only in estrogen negative BC is obesity correlated with greater chance of recurrence. It doesn't seem due to the fat cells themselves but to the high carb diet that helped produce the obesity. Insulin is proposed to be the bad actor as it is thought to be a tumor promoter. Eating foods with a high glycemic index results in high levels of insulin. Fortunately exercise reduces insulin levels. So if I want carbs, they should be ones with lower glycemic indices.

There is lots of research out there for risk factors in estrogen positive breast cancer; little specifically for TNBC other then to say that the patient profile is quite a bit different than that of estrogen positive patients. I did find one study that took a population of young, black TNBC patients and noticed no difference between levels of obesity with non-patients matched similarly.

So we had a dinner there last night using 'healthy' grains. Some of the recipes were quite tasty but time consuming to make. I see from the picture on the wall that the director had her twins. They definitely look quite a bit different from each other.

I didn't go to the UM support group last night. I'm tired of the same women plus Naomi is behind with several projects. School is over for her at the end of next week as she is a senior. Lots of neglected work since I was gone.

On my schedule today, the LiveStrong class. Then I go out somewhere with Josh for Mother's Day, which I am looking forward to. Then Naomi issues..not looking forward to that.

Back home

Oliver on walk near his apartment with the JFK library in background

Oliver is SOoooo big!

I am back home now. Lots of my flowers have bloomed in my absence-the primroses that looked like they had died after it bloomed is back and doubled in size, the Forget-me-nots,the lilacs and all of the creeping phlox. My poor dogwood skipped sending up blossoms though. Lots of pink dogwood in NYC. Naomi got her yearbook, which always is exciting to her and we went through it deciding who looks good and who doesn't, etc. Checks to sign from my various investments were waiting for me. Josh will take me out for Mother's Day tomorrow.

Yesterday I ran one last time along the bay. It was sunny, dry and calm so I had a nice run even though I probably have been over-doing it in the past week. Although this route is completely away from cars, I almost was run over anyway. On the access path from Shanna's apartment around a blind curve, a police cruiser moving fast suddenly appeared. I had to jump off the path to save myself. He just continued barrelling along. I ran more than than 35 miles since I have been gone. Sadly this only amounts to about a pound of fat but these add up. Since Josh was born, I've run about 32,000 miles-almost 1000 lbs worth yet I am not 1000 lbs underweight. Ha! I'm overweight! But sooner or later this thin body will emerge, already my abdomen is no longer distended.

After Oliver's morning nap, we went back to the North End, which is fairly close to the airport. Oliver was a little bit more cheerful about being stuck in a restaurant but still had to be wheeled out before I was finished. I stocked up on Italian goodies at Mike's Pastry shop. The rainbow cookies aren't quite as good as the place in Brooklyn but still yummy. I got more macaroons too.
The weather was still nice, despite the forecast and we took Oliver to a playground along the water, which he enjoyed.

I was scheduled to fly to JFK and after a brief layover, so brief that catching the next plane could be a problem, fly to Detroit. I didn't get a chance to print my boarding pass and the Delta sign-up Kiosks require a passport. All just as well because when I went to the counter, they put me on a non-stop to Detroit that theoretically would leave much earlier and in fact was boarding now. Rush, rush, rush. Ha, just kidding. Soon as I got to the gate, there was a problem with the plane plus right after I got my seat, they put the contents of a cancelled flight onto it too and now it was over-filled. Someone had noticed that there was a small dent in the plane and it had to be ascertained that this was OK and paperwork had to be filed. We had boarded the plane but just sat for more than an hour while redtape was being thrown every which way with promises of leaving shortly and people getting off the plane as they didn't believe them. I sat next to a man with I guess, Tourette's who repeatedly made weird kissing noises and lip smacking. It eventually left and I still got home 2.5 hours sooner than scheduled.

Now to begin the next phase of my life: recovery.

Mother's Day

The Precious One-Oliver

Oliver among the Mother's Day flowers. One bouquet for Grandma and one for Mama

I am going back to Michigan later today via New York as one way non-stop tickets were almost 5 times as much. I will miss my little guy and his antics but I am needed at home. Naomi has only 2 more weeks of school. In my absence, she finally bought a prom dress-prom is next Saturday.

On Mother's Day, Shanna went out with me minus Oliver, a rare event for her, for coffee and a treat at a bakery that she had won a gift certificate for in Dorchester. It was decided that Oliver really does not enjoy going to restaurants sitting in high chairs so food was brought up for Mother's Day dinner. I received phone calls from both Josh and Naomi with a promise of a dnner with the former. I didn't get their calls until quite late setting off a minor pity party.

I've been running alot here-up to my pre-cancer and pre-broken arm days. I ran more than a marathon in the first week here. Surprisingly I don't have shin splints from all the cement, which makes up 90% of the path nor am I especially tired. One of the days I had no choice but to run bald as there were gale force winds, difficult when they were straight at me, blowing clouds of sand on me. I worried that my meager hair would not be enough to protect my scalp from sunburn. Yesterday finally there were no winds and it was so chilly that I needed my hat. I sit along the ocean alot considering my life. I really hope that this cancer is truly gone-I am not ready to go. Most of the time I consider it gone but the reality is that it has a good chance of returning. One day I was watching a school of jellyfish undulating away in the bay when the light hit them just right. I sat outside last night watching the sun go down over the city's skyline (the sun sets so early here compared to Michigan). I could see my whole running path before me along the U-shaped bay. Last night the winds were such that the landing planes flew right over my head every minute. The planes taking off, not nearly as numerous, went straight east over the ocean. I was on the phone to home with the planes drowning out the sound. The winds changed again and the planes not so numerous and it was quiet except for the gulls.

Shanna let me feel the new baby thrash around inside of her. He is more active than Oliver at the same stage. Hopefully this doesn't translate into a toddler more active than Oliver or she really will run ragged. Oliver wants to be on the move every minute not even pausing to eat.

I return home with eyebrows and eyelashes, both were missing when I left Michigan. I also would have a face full of facial hair if I didn't take steps against that. It seemed to appear overnight last week. I wish the hair on my head would hurry up and grow. Still no hair on my legs (not missing that) and no oil or apocrine glands. I am less dependent on antacids to my stomach lining seems to have regenerated. My nails look fine except for the top quarter which remains damaged. In a month, they will be all grown out.

Running bald

Oliver and my brother's family

I hate my still bald head even with its eighth inch of hair but running with a ski hat on when it is 75 degrees and 90% humidity is very difficult. I am resorting to my stand-by mantra when I look or act ridiculous: I am never going to see these people again. These people being the anonymous walkers and runners of the Harborwalk trail in Boston who are amazingly in short supply during the week. I felt more than a little self-conscious looking like Cancer Lady but it felt good to feel the sea breeze on my scalp. I went close to 5 miles this morning. Shanna was too tired to go out today. I did take Oliver for a long walk along the ocean. He likes to point at the jets. Depending on the winds, they are right in Logan's flight path.
Yesterday we went to Brookline to go to a creperie but Oliver refused to sit still. I like the houses there and the beautiful gardens. Later my brother Bruce came with his wife and 3 daughters and his little Jack Russell Terrier Charlotte that Oliver enjoyed. He thought he would leave her with his daughter in Boston but her apartment wouldn't allow it. Ramy thought we could watch her but it would be a constant struggle making sure Oliver didn't love her to death and of course, Charlotte is well equipped to fight him off. Hopefully they make it into Canada all right with her. We went to a nice Italian restaurant in Dorchester-all 9 of us. I hadn't seen them in 1.5 years except for Leila, who is a grad student at Harvard who came over when Oliver was born.

Shanna is gone now at a rare mothers night out with the wife of a guy she went to high school with and who also has a 15 month old.

Happy Mothers' Day to all you moms out there!

lazy days

JFK library-a few minutes walk behind her appartment complex with Boston Skyline in background

Running trail near Shanna's appt

While Shanna's new baby gestates (22 weeks today), I very slowly grow hair. Last week at this time I had no eyebrows or upper lashes but now I do. Still my upper lashes are barely long enough to put mascara on them but the lower ones are more than half grown out. Superficial stuff I know but I do find it hard to be bald and hairless and I am glad that some hair is growing back. I now have a little arm hair too.

I've been getting up early to run along the bay but my body is now tired of so much running. Yesterday morning, it was raining and Shanna had a morning appt so we were off to Cambridge. The new little guy is doing great. I heard his heart beat. Shanna has to switch health insurance a month before she delivers which is very distressing but the nurse practitioner gave her a name of an OB who has privileges at the hospital she wants to deliver at who will accept her new insurance. She is now leaning towards a VBAC. Right before she was ready to push Oliver out, it was discovered that he was breech-unbelievable that they didn't know it before. He was a C-section. We walked around Harvard Square for a while near the hospital she wants to have the new baby. I would walk around there the 5 days she was in the hospital with Oliver. We had Vietnamese. My favorite Chowda House seemed to have disappeared in the last year so no Lobster Bisque for me. I did run when we got back but it was very hard especially against the 30 mph wind. Fortunately running on the peninsula she's on, one never goes one direction for more than a half mile. Shanna and Ramy went out alone last night for the first time in almost a year while I watched my little buddy who was quite good.

Today my brother comes on his way to see our step-Grandmother who just turned 90 in Montreal. He lives in Princeton NJ. He is picking up one 24 year old daughter from Manhattan and then picking up her twin who lives here. He'll have his 20 year old other daughter with them. The plan is for all of us to go out to dinner. It is sunny today. We'll go into Boston for some crepes.

Hair dreams

I dreamt that I looked in the mirror and suddenly I had 4 inches of hair. Unfortunately I woke up to the same old stubble. It is no longer completely colorless-I have some brown regions but still no more than an eighth of an inch. Where I do have hair is on my face; eye brows half grown in, lower lashes are one half original length, uppers are about 1 tenth. I had to get out the tweezers as all of a sudden, I grew mustache and chin hairs. Yuck-I didn't want those back! My legs are still smooth.

I have to be careful not to make any noise at night (like radiation induced coughs) or I wake up my 15 month old roommate and then he wants to be up and played with. He is very charming most of the time unless he missed a nap like today at lunch. Getting alot of running done as Shanna lives next to a path that hugs the coast for 38 miles. Yesterday we explored Dorchester by car in the pouring rain-lots of different ethic groups-a huge Vietnamese area. We had lunch at an excellent Indian restaurant. Today we went to the North End for Italian. Molto buono! We brought back very good pastries including excellent macaroons that seem almost like marzipan they have so many almonds in them.

The Frog Pond

Oliver in Boston Commons

Oliver sitting on one of the frogs at the tadpole playground

Yesterday I was waiting outside the train station waiting for Shanna to pick me up. A silver car pulled up with the driver having similar hair to Shanna's. She wouldn't open the door for me so I started pounding on her window. The driver looked at me-not Shanna! She must have thought I was crazy. The real Shanna pulled up 30 sec later. A taxi cab driver observed the whole thing and said he would have made the same mistake too.

I now have little hairs in my eye brow region, 4 mm lower lashes and one mm uppers. Wish my head hair would grow more though I now see some dark hairs. I didn't think they irradiated my arm pit but it turned dark purple. Now some of the skin is peeling. I ran 4 miles along the water. Much more humid here than Michigan and I was just dripping with sweat. We took Oliver for a walk in the Boston Commons. I couldn't find the make room for ducklings statues but he had lots of fun running around in the tadpole playground next to the Frog Pond.

I am now baby sitting Oliver (asleep) while Shanna runs errands. He is very cute.

Rain is forecasted for the entire week I'm here. Unfair!

Traffic

We use our Tom-Tom to navigate through unfamiliar cities. It always gives an estimated time of arrival. This time is useless in NYC. Noone measures things in miles around here-distance is measured in minutes or hours. The Tom-Tom converts miles into minutes assuming one is driving in the middle of Michigan. I once asked my brother-in-law how far it was between his apartment and his parents' because I wanted to run between them. I assumed it must be 10 miles or more as it took 30 min minimum to drive so I was very shocked that it took only 30 minutes to run it. I've spent a good portion of the last 3 days in traffic-I don't know how people put up with it. Steve always wants to go to the same Italian restaurant in Bensonhurst, which we did and I stocked up on Italian baked goods eating my sfogliatelle on the way to Boston. Naomi's idea of Paradise is this all chocolate restaurant around Union Square (Max Brenner's?)serving very expensive but tasty chocolate creations. She loves the chocolate pizza. Lots of traffic back and forth and Diane lives in the farthest corner of Brooklyn from Manhattan. Manhattan looks magical at night. Naomi just loves it here.
Today was the 42 mile 5 borough bike ride. It would have been fun to ride especially if it hadn't been raining, but I cursed its existence and its 30,000 riders today. I needed to be in midtown early this morning. No problem usually on a Sunday but we spent close to an hour circling to nowhere getting conflicting info how to cross over to 8th Avenue for my pick-up. Finally I just ran there with my luggage in tow to catch my MegaBus just in time playing Frogger with the non-stop stream of bicyclists I had to cross through. The Megabus trip was only $16. If I didn't plan it at the last minute, it would only cost $3. It arrived in Boston early.

So now I'm with Shanna, Ramy and my precious grandson Oliver for the next 8 days. Steve and Naomi are on the road back to Michigan. The extra hour idling in traffic in Manhattan didn't help Steve's mood.

Jade and Jerrol's Jamaican-Jewish wedding

Naomi with the couple Jade and Jerrol Me in background

Stu and Olive walking Jade down the aisle

Jade is the daughter of Steve's favorite cousin Stu who had married a wonderful Jamaican woman Olive. We battled unbelievable traffic to go to a North coastal town on Long Island near Oyster Bay for the ceremony itself arriving one minute before the wedding was to start. But due to heavy traffic, the wedding was delayed almost 40 minutes. It was like entering a time warp. Steve hadn't seen alot of these friends since they were all in their twenties. In my mind, I pictured them as I had last seen them but it was strange to see them transformed into chunkier, balding men. One of these men had a daughter Shanna's age and I used to hang out with his wife when we came to NY,which used to be quite often. Due to divorce and less frequent visits on our part, we lost touch. But the little girl, now a 30 year old woman was the spitting image of her mom with the same laugh and mannerisms. The mom herself, I could barely recognize. But then again, time really, really has not been kind to me especially these last 7 months.

The bride Jade was stunning and very graceful. She will earn her PhD in clinical psychology next month from Johns Hopkins. At the very deluxe reception, the bride and groom were introduced rising out of the floor in a cloud of smoke. Naomi was very impressed and wants her wedding to be identical to this one. A lot of fun catching up.

We drove in 2 parts through driving rain to get here. Naomi drove through Ohio and most of Pennsylvania. She still thinks driving is fun. We did find some time to stop at Jersey gardens for the prom dress but it was very frustrating as nothing appealed to her.

Diana and Meredith (her daughter) left early this morning to do the breast cancer run starting in Times Square. I was tired and it was raining. So Diane ran with my name on her back. Once the rain stopped, I ran on the boardwalk at Coney Island.

I leave tomorrow on MegaBus to go to Boston. They have the 5 borough bike ride tomorrow closing lots of city streets. Hopefully it won't impact me getting there on time.