Me and Joan; Gratitude and Unintended Consequences

I was shocked to see the cover of People magazine  adorned with beautiful Joan Lunden's bald head. She bravely shared her own breast cancer journey which she has just begun. Joan Lunden with her famous presence as a longtime former Good Morning America host has put the subject of breast cancer once again front and center in America's consciousness. I read her article twice and though our experiences are different, there are certain things that we share. We are now in the same sisterhood.

Every visit to the clinic at UCSF I  am overwhelmed at the parade of women of all ages and ethnicities bewildered, clutching loved ones and holding files and papers. Jeff and I  already feel somewhat like seasoned veterans having passed through the initial diagnosis stage. It is difficult to even see them.

The other day I saw a beautiful young women, maybe early forties, Her bald head had henna tatoos. She looked like an exotic warrior until she started to cry and was comforted by a woman who must have been her mother.Even exotic warriors have their bad days.I observed another young woman with hair starting to sprout on her bald head. She was holding a bottle of scotch no doubt meant for her doctor. Ahhh....I mused. I wish was at the point when I could deluge my practitioners with thank you gifts.

This past few days I celebrated Rosh Hashanah with family and friends. I felt good. For one thing I could eat. Eating has never been a problem for me....In fact, just the opposite. I have been fighting my weight forever and am a world class nosher so it is a new experience to not be able to eat because of having no appetite or feeling lousy. Chemo has the ability to mess up your appetite in many ways through nausea or indigestion and other possible side effects. I can't drink my beloved morning coffee any more because of the weird, bitter taste.

 With every good day I am overwhelmed with gratitude.  I realize  these good days are precious. I think about the old me BC, before cancer. I took so much for granted. I suppose that is human nature. I also think about people I know who suffer with chronic pain. My heart goes out to them.

I am also filled with gratitude from the kind words, emails phone calls, being put on healing lists and special gifts I have been receiving. The other day I got a surprise basket from my sister in law Judy and brother Nate and their children from LA. Every item was handpicked just for me like a tall cup perfect for holding the ice water I drink constantly and yummy bath salts. Elana, my youngest daughter, sent me the latest Barbra Streisand album. Devora in Israel sent a whole care package with everything from a journal to special mud to soak my feet. My son in laws have me hooked up with pot and a state of the art vaporizer in case I want to go that route! 

Laurie created Team Savta and ordered special red teeshirts. I have been getting emails from my son in law Andy's incredible family posing in the red Team Savta teeshirts.

My sister in law Maurine in Ashland tells me she thinks of me every day. My sister Linda and cousin Roz keep me laughing and call me more than once a day.

So yes, it is gratitude and it fills me up way more than the chemo. I'm ready for treatment #2. Bring it on!

Today I got an email from a friend in Israel who said, my blog about losing my wallet may have  had unintended consequences." It made me think. What a perfect phrase. This whole cancer experience is a series of "unintended consequences."

Gamar hatima Tovah, may you be listed in the Book of Life.

Adding Insult to Injury...

I thought I had it figured out...strong will, good health, family support. I could sail through the chemo treatments. It's much more difficult than I thought.

The week started out with my port implanted on Monday, Sept. 15. It was a small surgery and went fine. At first it pulled a bit but now I don't even notice it at all. The port will be used both to draw blood and for the administration of the chemo drugs.

Tuesday, Sept. 16 was my first infusion day. I met with my oncologist. The usual pattern will be to check my blood, meet with the oncologist then have the infusion. My white count has to be a certain level for the infusion to take place. The oncologist was optimistic that I'm strong and should do well through the treatments.

The actual infusion was on the fifth floor of the breast cancer center. I didn't know what to expect and was apprehensive. Jeff was right there with me though I sent him out after a while. The room was not large and I wanted him to have some fresh air.  The nurse who worked with me was calm, confident and competent. I was in the corner of a room with three other patients of different ages, some much younger than me having their own infusions.

I was sitting in a chair with my feet up.  The first medicines administered were solely to prevent nausea. They are meant to last the first few days when you are home with backup meds that I also had ready to take as needed. They really don't want you to feel bad and prepare you with an arsenal of meds.

After the first hour of the anti nausea medicines, she started the chemo drugs. My chemo is a three part cocktail. The first two parts are given for the first four infusions. The last part is given for the last four infusions. I felt OK during the infusion and when it was all over,  Jeff and I left the hospital and headed home.

The day after the infusion I need to have very expensive shot which can be administered at home. This is to raise the white cell count. Jeff was a medic in the army and thought he could do it. The first time though we went to our friend's home as he is a doctor and he showed Jeff.

All in all I'm doing OK now having weathered the first tough days. I'm trying to go for short walks eat small meals and do everything they tell me. Sometimes it works, sometimes it doesn't and I just feel like crap. I'm also emotional and cry easily. Jeff is my cheerleader as are my family and friends who call and check up on me or send emails.

Yesterday, six days from chemo I decided to go to Safeway on my own. I felt OK, got in the car and was proud of myself cruising through Safeway buying this and that. In some ways going through chemo is like being pregnant. You don't know what you want to eat or what might taste good at the moment. One day I liked Frito's corn chips... I guess it was the.salt and crunch. I had made some nutritious soups for myself in advance and they all seem yucky to me right now.

Back to my shopping...I noticed a girl in her twenties, as we kept running into each other in the same aisle and space. It struck me as a little odd but I wasn't completely on my game. I had my purse on the top of the cart and left it unzipped. The girl and I met again in front of the spaghetti sauce. She reached in front of me for Alfredo sauce. I even made a friendly remark like "I'm always in your way." That was when she stole my new leather wallet.

I realized it was missing when I went to pay. I rushed home and looked around. I thought I might have forgotten it but didn't find it anywhere. I returned to the store and paid with my checkbook. I have to say that the Safeway staff was not very caring of my situation and  my very flustered state.

My cousin Roz called when I just got home and told me to look at some of my credit cards. I still couldn't confirm whether I misplaced my wallet or it was stolen. However after checking my bank card I saw that my card had been used already at Target,  Ross and McDonald's.
Ouch I realized that this was a professional team who knew how to move fast.
Jeff had come home after I had called him. He pointed out that as long as I was OK, everything could be replaced. He was just concerned about me. Laurie also came to help and brought  my little adorable grandson, Shaya. You can't stay mad when you hold him and he smiles at you.

I cancelled everything and was pretty crazed until I got it all done. Jeff kept saying, "that's my wife. She's back!" However, yesterday evening after all the upset I was spent and realized I had not taken care of myself at all.When you are undergoing chemo, you need to drink and eat and rest.

Today is another day and I'm feeling good. I have a brisket marinating and a chicken soup on the stove. I answered a half dozen phone calls from family and dear friends. Your caring means so much I can't even tell you. Wishing everyone a sweet and healthy new year. And ladies, be careful with your purses and wallets!

Hair and stuff

I keep thinking about the words from the song, Hair.

Give me a head with hair, long beautiful hair

Shining,gleaming, screaming, flaxen waxen

We were children of the 60's and liked our hair, the longer the better. My college roommates had hair half way down their backs. Mine went past my shoulders.I have always had good thick hair, straight and easy to manage. I didn't have to sleep in soup can rollers or iron my hair to have it be straight. My natural color was a "dirty blonde." When I was a teen, some summers I liberally applied lemon juice. As I got older and my hair got darker, I added highlights or whatever it took to keep my same color more or less. 

Over the years my hair went through many incarnations according to what was au courant. I've been permed,  had a cut like Dorothy Hamill, the ice skater; Lady Di, or whomever was trendy.Having stylish hair was important to me.

One of the things I dread most when thinking about chemotherapy is the thought of losing my hair. It is one of the expected side effects of chemo because the chemicals that kill fast growing potential cancer cells also decimate hair follicles. That is why I decided to cheat the cancer and get my hair cut short on my own terms. Even though there is some potential prevention of hair loss now with cold caps  my oncologist said they wouldn't work for me.

My short cut is an interim stage before I go completely bald. My hairdresser, Rebecca, who is a master cutter, knew just what to do with me. She also understood the emotional aspect of this haircut especially because she went through the cancer treatment roller coaster recently with her teenage son. Laurie and my grandson Shaya come along as cheerleaders. You can't be sad when you see Shaya smile. He is the sweetest little guy, and his hair is spiked. I wanted to look like him!

I also decided to purchase a wig  as well as a variety of colorful hair coverings including paisley scarves and a burgundy turban thing. My sister Linda and my cousin Roz, who is like my older sister and our family fashion consultant, joined me. We went to the gift shop at Mt. Zion which has a wig section as well as sells stylish head coverings for women undergoing chemo. 

Now I will be one of them, joining this army of bald warriors. The three of us had a few good laughs when I tried on wigs that were awful on me, either the wrong color for my skin or not the right look. We settled on a wig that was similar to my hair color and was very natural for me.

What is it about hair, especially for women? We fuss over our hair and if we are having a "bad hair day" it can effect our mood. I don't know how I'm going to feel when that morning comes in a few weeks and my cute short cut starts to shed on my pillow. Jeff says he is going to like me bald. He thinks bald is sexy. That's my Jeff. He is incredibly supportive and devoted  and with me every step of the way, hair or no hair.

I just had a major orientation session with a nurse from the oncology department who gave me an overview of what to expect during my eight chemo treatments. It was overwhelming and thankfully my sister was with me. Linda took detailed notes and since she is a Doctor of Pharmacy, her presence was invaluable. I think I mostly listened, shell shocked at this whole process about to unfold. Even if I do everything right, there might be side effects. Once again I am learning that I have no control. The nurse told me how important it will be to keep up exercise, even walking every day for a half hour and other important things I must do.

Monday I will have a port put in which will make the delivery of the chemo easier. Tuesday is my first infusion. I've got great music in my i-Phone. I'm not sure what the best music is for chemo...mellow or rock. I've got both. My Kindle is loaded with good books. I will bring my book of Tehilim, psalms.They are very comforting.

And once again, the support and love of family, extended family and friends everywhere is overwhelming. The editor I work with in Adelaide Australia is sending me a special book he ordered for me. I got a call from Israel this week from an old  friend, just to say "hi" and check in. My niece and nephew in Los Angeles are so sweet and caring. I feel very blessed.

Thanks for coming along with me. Hold on to your hats, the road could start to get bumpy.

Dancing at Fisherman's Wharf in the Afternoon Sun

We waited for our appointment with the surgeon with trepidation. The first bit of news he told us was good. The surgery was successful and the margins were clear. I was healing well. The second part of the news was a blow. The surgeon reported that there was some lymph node involvement. The little waiting examination room was closing in.

What now? The surgeon told us the next step was to get a pet/ct scan which would tell us if the cancer had spread beyond the lymph nodes. I tried to make the appointment before I left the building. We wanted this as soon as possible. It was Thursday afternoon and too late to reach the office to get my appointment scheduled.

The receptionist with long sculpted nails and false eyelashes advised me, "don't eat because you have to fast before the test. I will call you by 8:30AM and let you know if we got you in."

We went home shell shocked. As luck would have it I had forgotten my cell phone to call the immediate family. When I thought about it, it was probably meant to be. We had to digest this a bit. I had  called my sister who was waiting to hear from us  borrowing and phone and told her to tell my girls. I would email Devora and Andy in Israel later.

We got home and could barely function Somehow we managed waffles later in the evening. Waffles are a good thing when you are half crazy with worry. I called my sister in law Judy in Los Angeles. Judy is a breast cancer surgeon herself. Throughout all this she has been  a steadfast source of information; calm, giving me her quiet advice and reassurance and checking in on me often.

She told me that even though there was lymph involvement, it did not mean it had spread. We clung to those words.

I was also making myself crazy going to the internet. I learned that is a huge no-no. There is way too much information on there and  I felt my body practically going into a wave of shock with everything I read.

The next morning I waited by the phone to hear about my appointment. 8:30 came and went and no phone call from the receptionist with the long nails and lashes. At 8:40 I called UCSF myself and got bounced around finally finding out she was out for the day and did not leave any message about my appointment for the pet scan.

Now I'm angry. This was the first time I felt let down by UCSF. The operator suggested I leave a message but I demanded to speak to a real, live body which turned out to be my surgeon's practice assistant. I explained the situation and that I was fasting. She said she would get back to me soon.

Within ten minutes I got a call and was told that I had the appointment for Saturday morning at the UCSF radiology department in China Basin, new UCSF facilities. I was incredibly relieved to get that appointment. I also got a call from the oncologist's office.

 Initially I was told I would be seen the following Monday.  Then there was second call we would have to wait for two weeks. I could not accept that information. There was no way Jeff and I could delay finding out what was happening with me.  I called and emailed the nurse practitioner and we managed to confirm my appointment for Monday with the oncologist. Sometimes you have to be relentless.

It was a huge relief to have that appointment as well. The waiting was so difficult. We wanted to know what was going on. We wanted a plan of action.

We prayed a lot. Devora in Israel is my five star general when it comes to faith and prayer. She was making special mishaberach's (blessings)  for me as were other people.

A good friend had brought us Shabbat dinner. It was difficult to eat. And it was our forty third anniversary. We put our anniversary celebration on hold.

Not my idea of how I would ever spend Shabbat morning, but we headed to UCSF early. To say we  were nervous doesn't describe our feelings. Both of us could cry at the drop of a hat. Any song on the radio would set me off. We were hovering on a precipice.

It was tricky finding the modern facilities even with our GPS. It turned out to be near the Giants ballpark. I might have put in the wrong address in the GPS. We did find the place finally after asking someone on the street, and I went in the very modern building. Two guards at a desk directed me to where I needed to go.

Jeff went to find the parking facility which was an adventure in itself. I was getting nervous because I was afraid they would call me before he found me in this maze of offices.

He came in just as they were calling me. The procedure involved first getting an IV with a glucose solution. This is what shows up any hot spots. After waiting for an hour for the glucose to take effect, they took me to the machine, a big white oval tube. Fortunately I don't get  claustrophobia  so  it didn't bother me.

I had to lay still with my arms overhead while the machine scanned me from head to toe for around a half hour. I tried to be calm. I sang as much of the Shabbat morning service as I knew by heart, over and over. The technician would come in to tell me how much longer.

At last it was done, and we headed across the city to be with  Elana and Saul and to see baby Elijah with his delicious cheeks and big smiles. Laurie and Ari were coming with baby Shaya, our little blonde bundle with his spiked hair. The best medicine for me is seeing my little guys.

Finally Monday arrived. We got to Divisadero St. in a silent daze. When the young doctor came in he had a piece of paper with notes first confirming some information with me, Then he told us that my pet/ct scan was negative, clear, no spread.

We almost kissed him. We cried and laughed. At that moment I no longer cared what the rest of the treatment would be. I would face it, welcome it, get through with it. I would kick this cancer in the butt.

The oncologist was blessedly matter of fact. He said the "gold standard" was a course of chemo, then radiation then ongoing drug therapy. I had dreaded the thought of "chemo." Now I said, "bring it on." We got what we prayed for, a clear course of action.

We stumbled out of the building quickly making phone calls. We knew we couldn't go home and headed to Fisherman's Wharf. It was a beautiful afternoon. Tourists strolled, seagulls squawked. We got something to eat, and for the first time in days feeling some appetite.

There was a great street performer playing danceable music. We sat on a bench in the afternoon sun holding hands,  kissing and listening to him. I got up and danced.

Learning to Wait

So once I found out I had cancer I had to figure out the next steps. Because of my insurance, I was forced to  have my surgery at UCSF. I really think G-d led me to this world class facility.  All the surgeons I would have used in Oakland did not accept my particular Anthem plan. I mentioned that my insurance situation is a saga.  Actually that is a huge understatement but I don't want to go there yet. I didn't have to second guess myself because I was at one of the best facilities in the country.

Everything I subsequently heard about UCSF is that it has state of the art treatment for breast cancer. All of my physicians are researchers and teachers in the school of medicine as well.  The breast cancer center is on Divisadero in San Francisco at the site of the old Mt. Zion. Ironically that is where I was born.

The first hurdle I faced was getting an appointment with the surgeon and though I pushed and tried every connection I knew, badgered the nurses,  I still had to wait several weeks.

I'm not good at waiting. I wanted the cancer out of me as fast as possible and get on with my life. I have found one lesson that I'm learning is that much of what is happening to me is out of my control.

We had a trip planned to Paris and Israel leaving in early September. We thought that we could still go on the trip with a month recovery after surgery. We were going to stop in Paris for five days then spend Rosh Hashanah with our kids in Israel. We also planned the trip so we could attend the wedding of the son of dear friends near Tel Aviv.

I had arranged a tour for us to visit the battlefields of Normandy. We had not been to Paris for many years and were looking forward to seeing the sites there.

In the middle of this Laurie had our beautiful grandson and I planned the Brit which we had at my house. I was on a roller coaster of emotions, the great joy of seeing our precious blond-haired bundle and the uncertainty I was facing with my diagnosis.

Driving over to the city for my first appointment to see the surgeon with Jeff, we passed the palm trees lining the Bay Bridge, looking out at the Bay. The sky was blue, it was a beautiful day. There were whitecaps on a blue-green ocean.  I couldn't help wondering, how is this happening to me. How can I be so healthy and have breast cancer?

When we found the second floor breast cancer department, I looked around at the women. Some were bald, others had hair. I couldn't  identify with them. I felt healthy.

 I signed in at the desk then was quickly called to meet with a nurse who took my vital signs, then was taken to meet with a nurse practitioner before meeting with the surgeon.

The nurse practitioner  was lovely, pregnant herself and we chatted about my new grandsons. I told her two of my daughters had just had their first children. She asked me where they delivered and kept the conversation light. Jeff was in the room, silent, nervous not wanting to sit.

When the cancer surgeon entered the small office, he was young, friendly and reassuring. He thought that my treatment would be a lumpectomy then radiation. Jeff and I  felt OK with the diagnosis and tentative treatment plan. It was what we expected.

My surgery would also involve some immediate reconstruction and he had us meet with the plastic surgeon.The plastic surgeon was the head of the department also friendly and matter of fact.

Waiting again. I had to wait to schedule the surgery and was on a waiting list.I was very relieved when I finally got a surgery date and received instructions about when to come to the hospital and what I needed to do.

My surgery itself went very well and I have had a quick recovery.I found the staff to be kind and caring down to the technician who brought me a warm blanket when I was waiting for a procedure prior to the surgery.

 Because UCSF is a teaching hospital, one meets many young doctors who are learning the ropes.One of the doctors working with my surgeon was a young African man with a wonderful smile. I concluded that he must must be really outstanding to have landed as a surgical resident at UCSF.

Besides the lumpectomy, it is standard procedure to test the lymph nodes. This is done by injecting a substance than tracking it during the surgery.

Our next appointment was one week post surgery to get the results , whether the lumpectomy was sufficient and to hear about the lymph node biopsy. So we waited again and those were tough days We hugged and cried and woke up in the middle of the night.  Jeff and I were to have our 43rd anniversary the day after my appointment.

My Detour

For those of you who are already accompanying me along this ride, thanks. Your support, encouragement and kinds words mean everything. Your prayers are my comfort and solace. I won't be giving you a minute by minute account, just the highs and I suppose the lows as well. To my family, Team Savta, you are my everything. To my Jeff, you are my rock.

Who ever thought that my routine mammogram last March would start me down this unfamiliar road. I never missed my yearly mammogram or physical. I have been blessed with good health and rarely even get colds. My biggest complaint is occasional flare ups of back pain but rest and a few Advil takes care of it.

When I got a call back for a follow up mammogram in March, the radiologist concluded that what I most likely had was a cyst but to come back in four months, not wait a year. I marked the date to make the follow up appointment. Whew...I let my breath out and didn't think too much about it.

In the mean time, I started with a new ob/gyn. My long time doctor no longer took my Blue Cross insurance  due to Sutter Health doctors not accepting Covered California and I started with a new doctor. My Anthem insurance saga is a very long story for another day. When she examined me, she suggested I move up the appointment. I made it a few weeks earlier.

This time the radiologist was acting in a way that I knew things were not good. I outright asked him if he thought I had cancer and he said it was possible. He told me I needed to get a biopsy. This was right before the fourth of July and Jeff and I were headed to Calistoga. We love to go to Calistoga around the fourth but this time our usual idyllic vacation was marred by me being on the phone trying to get an appointment for a biopsy.

 Though I was told initially I would have to wait several days, I found someone at the Carol Ann Reed Breast Center who heard the urgency in my voice that I needed to get this done immediately. And there was particular urgency as my daughter Laurie was expecting her first child, our fifth grandchild, very soon.

I managed to schedule the biopsy on the following Monday. I drove myself.  It was a simple procedure and they told me the results would be sent to my doctor  within several days.Despite hearing anecdotes from friends about their biopsies which turned out OK, somehow I knew I wasn't going to escape this bullet.

 I already got the call the next day from the ob/gyn. When she told me I had cancer, I was shocked but not surprised. I had to break the news to Jeff and my family. The ob gyn told me that what I had was small, caught early and I just had to hold my nose and take care of it.

I never once said why me?  It is more like why not me? So this is my challenge, and I hope I can keep this blog going while I head down this bumpy road that is definitely a detour in my life. Blogging is new for me, but since I have become a writer, it will be another avenue for me to explore. Hope you will be on my team.