Fuzzy headed

Being bald certainly isn't the worst part of having cancer.  

Morgan shaved my head Friday, August 20,  because I was shedding like a cat in June: hair on my pillows, hair on my clothes, hair in the sink.  I wanted to avoid hair in my food.  Ew.  I have two wigs but it's way too hot to wear them, so to protect my head from the sun I wear a hat outside and a bandana when I'm going somewhere, which is mostly to doctor appointments right now.  I'm currently revisiting the post-chemo slump week in which simply walking down the hall makes me feel tired.  

 I used to take things like brisk morning walks for granted.  Can't wait to be able to do that again!  I also can't wait to be able to spend all day making something, working in the yard for hours, painting a room, working on the chicken coop, going on a road trip, hiking, camping, or simply going to garage sales on a Saturday morning.   Right now I spend long hours with books, cats, and my laptop, looking out the window at the birds.  I seem to have about 2 good weeks out of the month and even on the best of days I must be careful not to do too much.  I choose one activity instead of 3 or 4.  Going out to dinner is going out to dinner and coming home and getting in bed.   I'm hoping that when it gets cooler I'll be able to do more outside.  I'm looking forward to the cool mornings when I can go for little walks around the neighborhood.  I love to watch the way the light changes from summer to fall.  I'll be able to sit outside on pretty days and lie in the hammock and read when I'm feeling logy.  Life is made of little moments.  

My hair hurts!

You know that feeling right?  Like there's an invisible force field pulling all the hairs on your head so that your scalp hurts.  I read that when your hair starts to fall out the scalp feels very tender.    (Yes, indeedy, but why does my head hurt and why do I feel nauseous?)  Tomorrow the head will be shaved!  


Last Friday I had a wreck and the car was totaled.  I'm ok, but my sternum still hurts like crazy.  (I took some Hydrocodone last night, which is probably why I woke up nauseated.)  Morgan has wanted a Prius for years, so we found one on Craig's list and bought it on Saturday.  It's a 2009 and pretty fabulous--super quiet, rides like a dream, and handles beautifully.  It might as well be a Mercedes in my book.  It's 85% recyclable!  The parts that are usually plastic in cars are made from plant-derived ecological bioplastics made from the cellulose in wood or grass instead of petroleum.  


On Monday, I went for a checkup with the breast surgeon.  She aspirated my breast and drained 80cc of blood.  Needless to say, it feels better and is less swollen.  


Tuesday I'll have my second round of chemo and Morgan's mother arrives to take care of us for a week.  It will be nice to have some mom tlc for awhile.  They just know what to do, those mothers.  

The chemo port has been installed!

Yesterday I had my chemo "Power Port" installed.  The port was placed under the skin, just below my collar bone. 

 Wiki describes this device and procedure more effectively than I could : "The port consists of a reservoir compartment (the portal) that has a silicone bubble for needle insertion, with an attached plastic tube (the catheter). The device is surgically inserted under the skin in the upper chest or in the arm and appears as a bump under the skin. It requires no special maintenance and is completely internal so [showering and] bathing are not a problem. The catheter runs from the portal and is surgically inserted into a vein (the jugular vein, subclavian vein, or the superior vena cava). Ideally, the catheter terminates in the superior vena cava, just upstream of the right atrium. This position allows infused agents to be spread throughout the body quickly and efficiently. 


The septum is made of a special self-sealing silicone rubber; it can be punctured hundreds of times before it weakens significantly. To administer treatment or to withdraw blood, a health professional will first locate the port and disinfect the area. Then he or she will access the port by puncturing the overlying skin with a 90° Huber point needle although a Butterfly needle may also be used. (Due to its design, there is a very low infection risk, as the breach of skin integrity is never larger than the caliber of the needle. This gives it an advantage over indwelling lines such as the Hickman line.) Negative pressure is created to withdraw blood into the vacuumized needle, to check for blood return and see if the port is functioning normally. Next, the port will be flushed with a saline solution. Then, treatment will begin. After each use, a heparin lock is made by injecting a small amount of heparinized saline (an anticoagulant) into the device. This prevents development of clots within the port or catheter. In some catheter designs where there is a self-sealing valve at the far end, the system is locked with just saline. The port can be left accessed for as long as required. The port is covered in a dressing to protect the site from infection and to secure the needle in position."  Thank you, Wiki!


The reason a port is recommended is because the substances injected into the veins for chemotherapy are quite toxic and are very hard on one's veins, not to mention the discomfort of numerous needle sticks for chemo and constant blood draws.   The chest is an ideal location because the veins are large and carry more blood which helps to dilute the the toxic drugs.  The procedure is simple, fairly quick (about an hour) and in my case was done under local and "twilight" (http://en.wikipedia.org/wiki/Twilight_anesthesia) anesthesia.  


Surgery started at 8:00 and I was home by 11:30 with a prescription for Hydrocodone (Vicodin).  Thank you, Dr. Abikhaled and the nurses and staff of Central Park Surgery.  


After Morgan brought me home from surgery,  Laura M. arrived to insure that I did not do injury to myself while still under the effects of anesthesia.  She made me lunch, got me juice, helped to unload and load the dishwasher, and kept me entertained until time for Morgan to come home.  Laura, you are awesome! Sweet Stella dropped in to drop off her beautiful casserole made from Boggy Creek Farms organic vegetables and to chat. Stella, you are a gem.  Then last night, Joel and Angela came over and  brought dinner to us from Curra's (Yum!).  It was great to hang out with them, even through a vague Vicodin haze.  And today, Angela the amazing, is returning to vacuum the floors, mop the kitchen floor, and do a couple of loads of laundry.  


I've been the grateful recipient of so much care and love.  This week I was cheered, fed, and well-cared for after my first chemo treatment by Michele, Finn, Edmo, and Kat, and Lynda brought me her wholesome, healing  Matzah Ball Soup.  Thank you, dear ones.  Morgan is the wonder-husband, always by my side, loving me, fretting over me, caring for me, and making me laugh.  If you want to do something for me, ask Morgan what he needs.  

First round of Chemo Cocktails

My first round of chemotherapy (http://www.chemocare.com/faq/act_chemotherapy.asp) was served by a sassy and wise young nurse, Rachel.  She was efficient, kind, jocular, and gave me some very good advice, "The mind is powerful and sometimes you'll start to feel nauseous the day of chemo, so take some Xanax or something before you get in the car to drive up here."   She's got me pegged.  In the picture below, she's administering the adriamycin, which is slowly pushed into the IV. 

For the second time, I met with my oncologist, Beth Hellerstedt,  resembling a younger and prettier Emma Thompson, she is a whirlwind of competence, determination, and humor.  (Did I mention her fabulous shoes?)  She supervises my treatment like a 5-star general, while patiently answering my questions and building my confidence for the fight ahead.  After that first treatment, I'm thinking my fight is against the side-effects of the Adriamycin/
Cytoxan regime--headache, nausea, crashing fatique. Took one of my 3 different nausea meds, which made me so drowsy I couldn't stay awake.  Considering how crappy I felt,  sleeping was a blessing.  Slept most of the day and night yesterday, too.  I feel better today, but I still have a headache.  


I was told that the onset of chemo side-effects usually occur 4-7 days after treatment, when the blood counts reach their lowest.   I'm hoping that most of my sickness has passed and that I'm not going to experience more of it later in the week.  


On a very positive note,  I am well cared for.  Morgan stayed home from work yesterday morning, then Michele and Finn came over yesterday afternoon. I couldn't have asked for a better caretaker. Thank you, Michele.  You're a total doll.  And Finn is such a sweet, beautiful child.  He glows.   Today, the Edmo/Kat care team pull tag team morning/afternoon shifts.  I'm pretty sure the red devil doll Edmo made for me is going to exert some powerful mojo on these chemo side-effects. 

This has fairly worn me out, so off to the land of nod. 

Like bubbles floating to the surface

more feelings are coming up, largely in the form of irritation at the small insults of daily life and time spent waiting:  for test results,  for appointments to be scheduled,  for post-surgery swelling and pain to subside,  for iv port installation, for chemotherapy to start,  for my hair to fall out... A good friend assured me that it was fine to call her and talk when I was feeling really angry.  But I'm not angry because I have cancer (question:  if a cancer has been removed from the body, yet one is undergoing treatment for cancer, does one still have cancer?  answer: Yes! for as long as rebel cells may remain. This is war!).  Who would I be angry with?  A plethora of environmental pollutants?  Me, for smoking for years?   My grandmother, whose rogue genes I share?   On the other hand, I'm not looking at my cancer as a gift, although having the disease has brought surprising gifts that I'm grateful for.   So if I seem to be under expressing anger or grief, it's because I'm not experiencing those feelings right now.  Mostly I just live from day to day, which is a fine way to live in my book.  I look at my calendar and see what's scheduled for today and I deal with whatever it is.   Lately it's been good stuff: spending time with friends,  renewing old friendships, writing and receiving lovely long e-mails from friends,  and receiving gifts from friends.  And by gifts I mean the tangible stuff you can hold in your hand:  Edmo's delightful ceramic red devil (for me a symbol of the chemo drug, adriamycin, known as the "red devil."),  flowers, cds, and fabulous food.  So far no pink stuff, thank you very much!


Last week I had a CT scan, a brain MRI, a bone scan, and an echocardiogram (basically a sonogram of the heart).  None of those things were painful. Hooray!   And luckily for me, I find the world of medicine pretty fascinating so I'm never bored, although I'm sure these tech folks wish I'd stop asking questions!  And have I mentioned how nice these people are?  Well they are.  Super nice.


I was supposed to have a chemo port installed (http://www.ehow.com/how-does_5633327_chemo-port-inserted_.html) last week or today, but the surgery people dropped the ball. My breast surgeon won't install a chest port, but she will install an arm port (I use my hands far too much for an arm port.  It would drive me nuts.), so we had to find another surgeon.  It's a boring story.  Tomorrow, my first chemo treatment will be with an iv, which will probably be fine, but I definitely don't want to do that every time because I don't want endless needle sticks.  I'll get to endure plenty of those for all that blood work!  


I'll try to report later in the week on the aftereffects of chemotherapy.  Oh, I almost forgot!  My friend, Lauren is giving me a snazzy, super short haircut to make the transition to baldness a bit less dramatic.  I think that's happening later today.   Now it's time to get ready to go to my art group, where sadly, I have no art news to report because stupid cancer is taking all my time!

Top o' the morning!

We went on our first walk this morning since my lumpectomy.  This is one of my favorite yards, but the  photo really doesn't do it justice.  It's a combination of tropicals and natives and this is its best year yet!

Cancer update:

I met the oncologist, Dr. Hellerstedt yesterday.  I really liked her.   I found out this morning that she was my friend Corie's mother's oncologist. Corie had e-mailed me the day after I had gotten the recommendation from a friend, singing the praises of her mom's oncologist,  how she had saved her mom's life,  and that I should at least meet with her,  but didn't mention her name.  Tiny, tiny world.  I feel like the goddess of healing has smiled upon me!  Thank you, Kati and thank you, Corie!

My cancer was classified as Stage 2A due to the size and the positive test for HER2 sensitivity. This type of cancer is fairly aggressive (grade 3) which explains how it got this big relatively quickly (3.2cm).

So here's the treatment plan. 3 months of chemo cocktails every three weeks including the "red devil," Adriamycin.  After that Taxol for another 3 months along with Herceptin that blocks the HER2 receptors. The Herceptin continues for 6 months after that's done. The first three months are will be the hardest, the 2nd and 3rd phases of treatment will be a lot easier to handle.  That which doesn't kill me... http://www.chemocare.com/faq/act_chemotherapy.asp

Beth said I'm likely to have 1-4 rough days after each treatment during the first phase. Chemo lasts three-four hours.

Next week they're doing every test under the sun:  echocardiogram, CT scan, brain MRI, full bonescan. This is to establish my baseline measurements of health so they can monitor me throughout the treatment and post-treatment for signs of problems or recurrence. Chemo starts on Tuesday,  August 3rd.  

Oh, Dr. Hellerstedt also gave me a prescription for a cranial prosthesis, i.e. a wig!  Isn't that hilarious?  So, I have always wanted a wig and now

I get one and insurance will pay for most of it!  Whee!  Wig shopping

anyone?  Although as hot as it is in September, I will probably be rocking the bald head until it cools off. 

Went for my first walk since the lumpectomy this morning and I feel pretty good. I'm going to see if I can do some light chores like laundry folding and a little pick up around the house, too. Then we're going to go out to dinner with some friends tonight, too. Life is actually pretty damn good, in spite of this foolish cancer! 

This is Ida Skeen and me.  Ida was my nanny when we lived in Port Arthur.   Because both of my parents worked and Ida, my mom's friend Judy's mother, needed employment, Ida came to live with us during the week where she looked after the house and me.  Mostly she looked after me.  We loved each other very much.  When my dad took a job in San Benito (down in the Rio Grande Valley), Ida moved with us.  Sadly, she missed her own family and grandkids so much that she only stayed with us for a year, then moved back to Bridge City.  I missed her terribly and when we would go to visit family in Orange, we always made a trip to Bridge City to see Ida and her big, affectionate family.  They became very dear friends and I loved spending time at their rambling old country house.  There was a screened sleeping porch and lots of big old comfy furniture for curling up in and reading.  The back yard was huge, with enormous trees, a badminton net, and a big vegetable garden.  Ida's grandsons,  Ricky and Butch, who were a few years older, would actually play with me sans complaints! 


I was thinking about Ida today because when I looked at this picture this morning,  I realized how beautifully it depicts love.  I'm feeling a lot of love right now for Morgan and our family and friends, and I know how healing that is.  


My lumpectomy was yesterday.  Three lymph nodes were also removed.   Some hopeful news is that the sentinal node (http://www.webmd.com/breast-cancer/guide/sentinel-node-biopsy) does not appear to be cancerous.  If no cancer is found there, chances are that there will be no cancer in the other two that were removed.  And if it's not there, then it's safe to say that it's not in the lymph system.  Cancer is happiest in the place it originates.  The next place it wants to go is someplace neutral--the lymph nodes.  It will usually move to another organ only after going to the lymph system.  So now we have to wait for the pathology report to make sure the edges of the mass that was removed are cancer free (known as "clear margins") and I'll meet with my oncologist.    If the margins are clear, then I'll move on to radiation.  If not, more surgery.   There's a lot of time spent not knowing with cancer.  I've been getting friendlier with that frame of mind.   It's teaching me to live, if not in the moment, at least in the day!  


The surgery recovery period is going to be longer than I'd anticipated.  I'll be able to move around this week, but I can't lift anything heavier than 5 pounds, can't drive for 2 or 3 weeks, and have to wait until my surgeon authorizes it to begin exercising.  I've cut my pain med dosage in half and that seems to be fine.  Yes!  
I'm going to stop typing now because that seems to be making the affected arm sore.