Cooking for Survivorship

This was sent by my fellow Italian student Jeanette

Yesterday was my "Cooking for Survivorship" class at the Wellness Community. It is getting more popular as so many want to avoid a recurrence. So the foods we prepare are high in anti-oxidants, low in fat, no meat, no white sugar or flour. Have I adopted this diet at home as I should? Not really but baby steps..baby steps. I will make some of the recipes for the moms tomorrow. There is usually one or two new people there so we all introduce ourselves with a summary of what we've gone through. I mentionned that my latest challenge is the teenage pregnancy and that the shock of it was nearly that of hearing about my breast cancer. Then I felt bad as how is a new grandchild anything like a tumor. One woman came up to me later and said that someday I will look on the baby as a blessing. Maybe. Naomi asked me earlier in the day, Aren't you excited for me? I know what she wanted me to say but I just couldn't. I know. I need an attitude adjustment. I'm no longer moping about it and am trying to prepare Naomi as much as possible. I have to be more positive about this baby. A woman in our neighborhood, Josh's best girl buddy for many years, recently had a baby with a minor disability. Her mom blamed her for working too hard causing the baby to be 'defective.' Suffice it to say, grandma won't be seeing that baby anytime soon until a big, big apology is made.

Our new insurance covers nothing for my visits to my cancer team until I rack up more bills. I will be seen every 3 months for at least another year. I almost hate getting mail as it is bills, bills, bills but I did get a beautiful card from Lesa of LittleLifePreservers I will scan.

It is spring for a while here and I was able to run in the cool air in shorts no longer worrying about ice patches. I basked in the sun later on my patio. A lazy day. I am fighting a cold but I still can run.

A Year without Chemo

22 weeks, 5 days

March 10, 2009 was the date of my last Taxol infusion. They were running out of good veins in my left arm to access. They never do chemo in the arm in the side of surgery due to possible lymphedema. Too bad because that's where I have my best veins. I hated the search underneath my skin randomly jabbing at various veins-very painful and creepy. In the end they made do with a substandard one. Alarms would go off unless I held my arm at some painful angle which on that day was for 5 hours. Good times. Taxol has to be delivered very slowly due to possible allergic reactions. To ward these off, we are pre-dosed with steroids and various antihistamines-all causing their own side-effects. Taxol itself is not the allergen but the vehicle used to solublize it made from castor bean oil (same bean the toxin ricin comes from). Back in the lab, any potential drug not readily soluble in the usual vehicle (water)would be dissolved in this 'cremaphor'. Sometimes it was hard to tell if the effect was from the drug or the cremaphor. Little did I know they actually use this stuff in humans and that would be in me. Taxotere has a different vehicle, much more costly but the'cheap' stuff for me as I tolerated it. Taxol itself is not cheap. It is a natural product, an alkaloid found in the bark of Pacific yew trees. It has nine stereocenters, which doesn't mean much to many readers but makes it almost impossible to make. For a while, it was the holy grail of synthetic chemistry. I listened to many lectures at meetings with chemists showcasing their brillance in developing routes to make it. A route was needed as the Pacific yew supply was running dry. Eventually it was discovered that a crucial intermediate could be obtained by plant cultures of the cultivated yew and then converted to the actual Taxol. Later it was discovered that certain fungi produce it which might make it easier to cultivate (fungi grow faster than trees). Also these fungi produce other 'taxanes'. Maybe one would be better than Taxol? I am sure they are working on that.
So my last infusion left me with a throbbing purple lump on top of my left wrist which slowly became smaller and less painful as time went by.Now it is a faint purple line. What bothered me the most about Taxol is the neuralgia it caused especially 3 days after dosing. All my muscles, especially around my hips and trunk would be painful to pressure meaning I couldn't sit, lie down without being in pain. It was neuropathic pain which does not respond to the usual pain killers. One of its minor side effects is damage to the nails. Many lose their nails to it. I was left with white ridges and brown stains.It felt that my nails could fall off at any time but I just lost 2 toenails. But of the 3 poisons I had injected in me, from what I read Taxol was probably the most useful in preventing recurrences. The jury is still out on what the Red Devil did for me.

I get updates from the Susan Love Foundation about 'breaking news'. The aspirin a day cutting recurrences by 50% update was in my in-box the other day. This is the same number I was given for what chemo would do for me. Certainly gobbling aspirin would have been easier. But at this point, it is not being recommended until further study. Why the hell not? Yesterday I read a report in the 'medical breakthrough' section of the Wall Street Journal that men taking NSAIDs regularly were more likely to have hearing loss-something about changes in blood flow to their cochleae. No mention about what happens to women. But less heart attacks and strokes and lower recurrence of cancer versus possible hearing loss and stomach bleeding...you make the call. For the record, my stomach is still shredded by the Red Devil, which along with the Cytoxan, has been known to cause deafness (along with heart damage, more cancer,..)

So a year later, I am alive with a full set of healthy nails, sweat glands, oil glands, and normal blood values. I am no longer puffy due to steroids. I still weigh too much-how much no one knows, most of all me. I do have muscle tone though and can run for a long time without gasping for air. I now fret that my hair is growing too fast (expensive to keep dyeing it) and its chemo curl is relaxing into chemo waves. I still have right arm pain that is probably due to treatment. Yesterday , our warmest day ever in the past 4 or 5 months, Naomi and I walked at glacial pace to the playground (along with her (thankfully) clearing infection, she has now developed back pains from all the sitting in one position) to bask in the sun. I used the various equipment there to stretch out my frozen joints, it seems to help. We returned home for more studying (Tuesday is intensive study day) and to watch one of those birthing shows on TLC. Yesterday was the silliest birth yet. The crazoid mom insisted that her 4 year old watch the whole proceedings done without any epidural. While the mom screamed in pain, the child stuck his hand in her mouth to shut her up. Naomi thought that was funny. Meanwhile, the husband and grandmother stood uselessly to the side. Shanna was in the birthing room when I had Naomi but she was almost 12 and not especially squeamish. I had more or less given birth quietly without drugs for the older two. I thought that a third birth would be easy-peazy especially as by then, I was a marathon runner who I thought could push herself through anything. But even so, I know circumstances are different with every birth and I didn't want to scare her childless so I told her that if I said to leave, she'd leave and wait to be called back in. My waters ruptured 2 weeks early and the midwives told me to wait for 3 days before an induction as most likely I would go into labor. After dripping around for 2 whole days, I couldn't take it any longer and at the first sign of a contraction, I demanded to be admitted. The induction caused me to go from no labor to end-stage labor in just a few minutes. After the first contraction, I was demanding relief (this was after how I was bragging just a few minutes early how I had a 10 lb baby-Josh- with no drugs). I sucked on laughing gas, which was heaven sent. Naomi was born after 1.5 hours total from start to finish. Sometimes I wonder if the rapid delivery somehow caused her problems though usually, physical problems are the result and she was unbelievably athletic. But maybe that frontal lobe was deprived from oxygen for a few seconds..Anyways Shanna was not traumatized and went on to have her own 2 babies.

And now Naomi, the baby, is pregnant.

My precious ones

The path outside of Shanna's apartment with Boston in the background

Pink Isn't the Only Color Associated with Breast Cancer

As we slowly weaved through the 5.5 miles of twisty streets through minority Boston neighborhoods on our way to Oliver's classes in Jamaica Plain, we'd go by this billboard stressing the deadliness of BC for African Americans. The incidence of BC is much less for African Americans but the mortality rate is higher. Some of it could be due to access of health care but some of it is also due to the prevalence of TNBC among African Americans, particularly for young women. Right before going to Boston, I read the obituary of a young woman with a familiar name. Could this Tia be the same girl Shanna played basketball with in 7th grade? Yes it is, Shanna confirmed. I remember her as a particularly good guard very determined to bring the ball down. Girls' sports weren't as developed in those days compared to when Naomi played. Tia must have had brothers to help her with her considerable skills. But now she is dead at 31, probably of TNBC (the kind of BC was not specified).

In Ghana, 60% of BC is TNBC compared to 10-15% here. As Ghana is a west coast equatorial nation, it is likely that many African Americans share the same ancestry as the Ghanians. A researcher at UM, Lisa Newman is currently in Ghana looking for the gene that is possibly causing this. It isn't BRAC1, the defect that causes many cases of TNBC, but an unknown one. What could be done with this knowledge? At the very least, women could be told that they are at risk. At best, if a particular antigen was produced, a vaccine or a drug targeting it could be developed. The inheritance patterns could be established though having BC in other parts of the world is so shameful, many won't admit to it.

TNBC (triple negative)has completely different risk factors than the more prevalent and more studied estrogen positive breast cancer. It is a different disease altogether except it is found in the breasts. And there seems that not all TNBC is the same. Certainly the kind that BRAC1 ladies get and the young African Americans get seems more aggressive. I am selfishly holding on to the hope that the few older white women who get it have a more benign course. I have no statistics to back me up, just alot of anecdotal evidence. One reason that we are more likely to survive is that we are in the age group having mammograms; 30 year olds aren't looking for BC in general and mammograms do them little good.

Also in the obituaries last week, a former softball teammate of Naomi's of heart transplant complications. Naomi doesn't remember her but only the girl's father who coached their team to keep an eye on his then eight year old daughter.She was 19.

While we were in Boston, Naomi spent much of her time connected to her laptop. A former friend contacted her through Facebook. I referred to this girl's family at the time as the Trials of Job family. Both the little girl and her father shared the same heart defect and needed heart transplants. The father had one but was rejecting his heart as they desperately looked for a new one. The little girl, then 8, was doing all right for the moment with her heart but had such a list of things she couldn't do that it made me very nervous when she was over, which was often. I thought any moment this girl could go into heart failure under my watch. But I really couldn't say no to her or her family because at the time, the mom had a brain tumor and couldn't drive due to seizures. Geez!!! Ten years later, the girl and her dad are fine though I would not be able to recognize her. The mom however died 4 years ago.

It is a sunny day here in Michigan. The 2 feet of snow we had is slowly melting but I can see some of my spring flowers poking through. I went for a long run yesterday wearing shorts basking in the sunshine. As I had run in Boston before our big drive Saturday, I am tired. Back to the Y for me even though the weather is especially nice today. But it will be nice for a while..hope the winter is over.

Yesterday was Julia's (my daughter-in-law) birthday and we went out to dinner with her and Josh. I noticed she had wine with her dinner (I know what this means..sigh). But it was fun catching up with them. His friend the Olympian, came home with lots of stories. Later I tried to watch the Oscars but fell asleep.

NaomI I moaN

Daniel and his folds. He is sooooo cute but moves around quite a bit so taking non-blurry pictures of him is impossible

Two moving targets relatively still for the second

Daniel sitting in the Circle of Neglect pointing to his erupting tooth

Oliver finishing breakfast

Daniel all bundled up ready to go

22 weeks with Oliver in the background

The baby is kicking harder and harder but I always miss it when she suddenly grabs my hand to feel it.

Sweet treats at the bakery in Brookline. I bought some very tasty ruggelach there

View from Rainbow Bridge of Niagara Falls. We were on this bridge for a long time yesterday. Naomi could have taken a better picture if she would have just stood up through our moonroof but that would be work. She took this by reaching blindly from the moonroof. Note to Canadian Customs: Check out why it takes the Lane 7 guy three times longer than the Lane 6 guy to do the same job. Note to self: stay away from Lane 7.

Sunset from Shanna's terrace. A more interesting shot would have been to waddle down to the beach and take a picture of the Boston skyline to the west-yes Boston is almost due west (and somewhat north) of Shanna as she is on a pennisula sticking out into the ocean.

Pleasure Bay-South Boston

To get to these series of causeways that eventually leads to Castle Island takes 3 miles of running (6 mile round trip). To run on the causeways to get to Castle Island is an 8 mile round trip-more if I actually run on the island, which I did Tuesday. Logan Airport is just an island over to the north so the planes fly very low overhead. The Castle in question is actually an old fort

The start of the causeway which thankfully, is not cement unlike the path leading to it. It is very refreshing in the summer to be out in the water. Not so much with the northeast wind in the winter

Naomi on Carson's Beach about a mile from Shanna's apartment. Her complex can be seen as a series of red brick buildings. The white building is the JFK Library on Columbia Point



We are finally home after the grueling 13 hour drive with Naomi's throbbing music still resonating in my head. When we were not studying microbiology, we took turns listening to 'our' music.The roads were clear and sunny but Canadian Customs was a bitch. Outside of Buffalo is an electronic billboard with estimated times for the various crossings: the Lewiston crossing (one that the Tom-Tom suggests) was 60 minutes plus vs the Rainbow crossing (0-30 minutes which turned into 45 minutes due to me guessing the wrong lane). There is a 3rd crossing but it flashed too quickly for its abbreviations to make sense to me. Everytime I see the name "Rainbow Bridge", I think of that sad poem people send you when your dog dies saying how happy your doggy is on his side of the Rainbow Bridge happily cavorting painfree now that he is dead. But with all the mist kicked up by the falls and sunlight, rainbow spottings from this bridge are quite frequent and thus the name. Note to self: if you are the only one in the car capable of reading a map, don't be driving when you have to make a change of plans or memorize all possible routes ahead of time. I think I know the path now. Another issue was trying to cajole Naomi to move during our stops so she wouldn't develop thrombophlebitis or a bladder infection from avoiding peeing. She still has an infection despite treatment. Her own OB was useless but Shanna's friend the OB sent in a script for us. Lots of moaning the entire week with her telling the both of us that we don't know what pain is. Oh I think we do and it has red hair. She didn't want to hear how the second trimester is the easy one-wait until the third if she wants misery and how at this time while pregnant with her and being 19 years older, I was running 5 miles a day whereas she can't walk 50 feet feet in less than 2 minutes.

Due to her condition, baby bootcamp was a bust although I think she did absorb some mothering skills from Shanna. She also received lots of baby equipment. In her rare good moods, she did interact happily with Daniel and would rock him to sleep. Most of the time she wanted to just lie around and moan. On our last day, she wouldn't go to Oliver's music class or to our trip to the North End, which normally she'd enjoy. As it was sunny, I did drive her to the beach (usually one can just walk to it-or in my case run to it) and it cheered her up somewhat. She was mad at herself for wasting a potentially good time. There won't be many opportunities in the near future to be on vacation. She still has a very romanticized version of what motherhood will be despite seeing Shanna night after night trying to quiet a sick, fussy baby. Her baby won't get sick and she thinks she knows how to make them happy. Shanna at one point said how embarassing it is to have a teenage mom for a sister. I guess it suggests that we are low class somehow. But just try being the mom of a teenage mom with people pointing their fingers and tsk-tsking your obvious failure as a mother. Their precious sweeties would never get into this situation, they were taught right from wrong..blah, blah, blah. F them.

What does it take to be a good mom?

For the past 4 nights, Daniel's respiratory infection (diagnosed by the doctor as RSV virus)has made it difficult for him to feed or sleep. He also is teething. He does not suffer in silence. Shanna walks with him for hours getting by on just a few hours of sleep. Meanwhile Naomi can completely block him out. This does not bode well for baby Taenae. Maybe she will rise to the occasion with her own child..maybe. Of course she is suffering too as she keeps reminding anyone within earshot. She has a minor infection that she finds intensely painful. Noone know the pain she's in-noone. Labor, broken arms, kidney infections, post-surgical pain-she just wishes that she had those conditions instead. We just don't know what pain is. Can't wait for her to be in labor.

Meanwhile her studies are being neglected. She has a big test when she returns from her break but is too miserable to concentrate. She spends her days on the phone complaining to Dontae on how miserable she is. He's probably counting his blessings she's gone.

It was sunny yesterday so I went on a long run to Castle Island-almost 9 miles, my longest run in a very long time. There is a mile long stretch in which the path is a narrow causeway in the middle of Boston Harbor and so one is almost surrounded by water. Logan Airport is just an island away so the landing planes are very close overhead..

While Shanna and Daniel were at the doctor, Naomi, Oliver and I went to the water. In general, Naomi likes the ocean but she walked like a 90 year old woman having to take frequent breaks. But the sun and water cheered her up some.

But in the evening, it was back to self pity for her. I am not sure what requires more patience, trying to soothe a sick baby night after night on very little sleep or dealing with a very immature teenager that soon will need to find some strength to deal with what's coming. Serenity now!!!

Croup

Poor Daniel! He is having such a difficult time with the croup. When he cries, it is this squeaky high pitched cry and we end up laughing at him as he sounds so funny. He stops and laughs with us but then remembers how miserable he is and resumes his crying. He wheezes as he breathes but isn't terribly sick, is alert and still wants to eat. Shanna has him in the shower now so he has moist air to breath.
Naomi is learning alot about babies. Oliver loves Curious George so lots of his clothes have monkeys on them. I said that Naomi's baby probably will get these clothes and she got mad. A black baby wearing monkeys? What could I be thinking?

So Shanna lives on the water which has miles of paths along it. Nice to run on except that most of it is concrete, extra hard on my legs. I went close to 7 miles yesterday but today was extremely windy and Oliver needed to be at his class early in the morning. He is in a toddler class to help with his expressive language issues. He actually speaks quite a bit but has his own language. He will probably be reading before he speaks sentences as he knows all his letters. We watched him through a one way mirror. It is good for him to have other kids to interact with. We then went to Brookline for some crepes.

I took Oliver for a walk later along the water. He ran the whole time we were out. So much energy!