Tuesday, March 24, 2015

The Last Treatment-Ringing the Bell

This morning I drove myself to Mt. Zion for my final radiation treatment, #25. I was nervous though I don't know why and woke up at 3:30AM not able to go back to sleep.On the drive over, I was idly counting the number of trips I have made to San Francisco and UCSF for my doctor appointments, lab tests, surgery, follow ups, chemo and radiation and it got up to fifty.

Wow, this "detour" has been more than I could have ever imagined. It was good I did not know the whole picture because it would have been overwhelming. Some parts went better than expected like my surgery and the radiation while the chemo was really difficult. The AC part which they call the "red death" lived up to its name and the side effects were brutal.

What has been amazing is how quickly the five weeks of radiation have flown by. I have become friends with the valet parking attendant as well as my four technicians. Today I gave the techs muffins and cupcakes. When they finished they hugged me. Then I went to meet with the doctor who sees me every Tuesday.

She told me I am doing really well and though I have some skin irritation it has so far been very manageable. The discomfort will peak this weekend but I don't think it will be bad. Though fatigue can be a side effect, I have had great energy.  When she finished her quick examination, she went to get me more of her special creams and honey patches I use on my skin. That is when I started to weep, overcome with emotion. Her resident immediately got me tissues and when she got back in the room she gave me some too. I felt overwhelmed to have reached this day after almost nine months, and don't think I can even process all my feelings yet.

The tradition upon completing radiation is to ring a special bell in the hall and that is what I did as hard as I could. It was funny that two of the receptionists came running to give me and another woman who was finishing big hugs which is what they do when they hear the bell. It is like a graduation!

Jeff and I went out for a drink tonight because he wanted to mark this day with a special celebration. I am filled with gratitude to have made it through all of this. Thank you to  my wonderful husband, my daughters, son in laws and my five cuties and to my family and dear friends, everyone on Team Savta. Your caring support, phone calls, emails, cards, care packages, mahjong games, rides and companionship has kept me going more than you can every know.

Thank you also to my faithful blog readers. Your comments and encouragement have helped me so much. To date my blog statistics are almost 2500 pageviews!

My hope is that as time goes on I will be able to take what I have learned in the past nine months and use the experience in a positive and meaningful way.

Though my future blogs will no longer be about "my detour,"I would like to continue with occasional pieces about travel or other musings. As a writer, I enjoy the blog format and hope you will continue to follow my work.  I am hoping to also develop a web site where I can showcase some of my poetry and short stories.

All the best for a happy spring and if you celebrate, have a great Passover.

Friday, March 13, 2015

The Flashing Light at the End of the Tunnel

I can see it...there is a light flashing at the end of the tunnel.  After almost nine months, I am getting close to finishing my treatments. I have completed eighteen radiation treatments with seven to go. The radiation treatments have been going well. Everything is very fast and I can be in and out of UCSF in twenty five minutes.

I have the routine down pat. I sign in, change in to a gown, go to the waiting room and get taken in by one of the technicians. More often than not they see me before my appointment time.  Each time I have to give them my name and birthday before I go to the room.  While I had heard that the  precise positioning on the table takes time, my four-person crew of technicians are quick and efficient and have me ready to be zapped within minutes. The machines then pass over me with a whirring sound, rotate to several positions and after maybe six or seven minutes the technicians return to help me off the table.

Then they say, "have a nice day." This strikes me as ironic and the ultimate understatement. After having gone through so much, they wish me a nice day like I just brought in dry cleaning. They are trying to be friendly and they see many patients every day, yet each of us has our own hurdles that we have endured.  I am aware that my life has been changed forever.  However I do  thank them and wish them a nice day back!

I have been going to the city on BART or driving, and it has not been bad. After my treatments I have been meeting friends, hanging with my sister and cousin, seeing my grandsons and in general breaking up the days so that I am wonderfully distracted.

I am happy to report that I have been feeling really well and have so much more energy then during my chemo treatments. Jeff keeps saying to me, "you're back...!" He is thrilled to have his "old wife" back, especially when  he sees me doing things I used to do with the same intensity or even getting on his case!  I am starting my annual pre-Passover crazy housecleaning where I go through all my kitchen drawers and cabinets and empty them of crumbs and the little rice kernels that wind up in the corners.

We are once again seeing friends, attending events and socializing.  It feels great to be back to life. I now have peach fuzz on the top of my head. I am not sure how my new hair will be. It is often different and could be curly  I'm not quite ready to pitch my wigs or head coverings yet though I am tempted.

I do appreciate every good day. I hope I will never take this profound sense of gratitude which I am feeling now for granted. Have a nice day!


Saturday, February 21, 2015

Radiation and some small accomplishments

I have now had several radiation treatments and I am happy to report that everything is going well. The time I spend in the treatment room is very short. Positioning me on the uncomfortable table just takes a couple of minutes. I get maneuvered to a precise angle which is measured in degrees and my arms are placed overhead and put in armrests.  My techs are Diem and Al and so far they have taken me before my scheduled appointment time.

They go out of the room and the machines whir and move for maybe ten minutes.  Music plays in the background, and  I try to sing along in my head to the Mama's and Papa's or Barbra Streisand. I also pray for the success of this last chapter in my battle.

I drove in one day though driving in the city is like maneuvering around an obstacle course! Twice this week I took BART which I don't mind. I get on BART at the Fruitvale station where there is always paid parking available. I get off at the Montgomery St. station then get on the 38L bus to Geary and Divisadero which takes 14 minutes then walk two blocks to the hospital. Riding public transportation is interesting because you get to see the true face of San Francisco. There are many seniors; Asian, Russian and Hispanic. I will try to remember some of the more colorful characters for my creative writing.

On the return downtown I took the 38L and Uber. On one bus ride, the driver complained to me how difficult it is to get down Geary with the delays due to the huge construction project which won't be finished until 2018. He said it will be an underground streetcar going to Chinatown at a cost of a billion dollars.

My Uber driver was a young man who when I told him why I was at Mt. Zion had an interesting conversation with me about his father who had cancer but died of a heart ailment. He told me how his father used to work in the shipyards and got injured on the job.  Everyone has a story to tell.

I now see some familiar faces from chemotherapy waiting for their turns for radiation in the waiting room. We chat in a general way about our hair growing back or other light subjects. No one wants to go in to detail about her particular situation. We all put on a good face and try to be upbeat. Some of us wear colorful kimonos instead of hospital gowns which we received as a gift. Mine is purple and black and quite elegant. They are silky and much more comfortable than the usual gown. The husband of a patient donated them to the hospital for women undergoing radiation.

I am  proud of the fact that I am back to doing more writing. I have been taking my favorite writing workshop on Thursday mornings, Lakeshore Writers, with Teresa Burns Gunther. I was worried that maybe I could not write as I had done previously but I jumped right in. It is wonderful to hear the "voices" of the eight other women in my group with their distinctive styles of writing. We listen to each other and echo back what we like in each other's pieces.

 I also have been participating in a writer's "boot camp" which I had done two other times.  I work with a writer from Los Angeles, Linda Schreyer. who sends out several prompts every other day over twenty days. I select one of the prompts and write 1000 words which I email back to her. I get a critique on the ten pieces I have written in an hour long phone session with her. I was hesitant to sign up for this as well as I thought I would not be able to do it but happily I am back in the saddle cranking out my thousand words every other day. It is great discipline though this round I am doing more creative nonfiction than straight fiction. As one might expect, my current health situation has popped up in several of the pieces.

Another little milestone was my first 2.5 mile walk  to Skyline High from my house which involves a few serious hills. I remembered how even walking a couple of blocks was challenging when I was undergoing chemo.  Jeff and I  went on Saturday morning early. It was a beautiful February day, cool and sunny. Lush spring blooms dotted trees everywhere. I love this season with the pink blossoms and  daffodils and irises poking through the ground. Spring is a time of hope and renewal, and this is how I am feeling as well, looking forward to my return to good health.

Wednesday, February 11, 2015

The Simulation

I drove myself over to UCSF early Tuesday morning. It was crisp and clear after the rains. New construction dotted the skyline giving my beloved dowager, old San Francisco, a facelift. l sang along to an old Barry Manilow cd which kept me cheered up. This is the beginning of the final phase of my treatment. As I was driving, I had one of  my moments which hits me every so often. Cancer treatment can be overwhelming and I have to remind myself to be strong and that I will get through this last part. Radiation is not supposed to be as difficult as chemotherapy with comparaitively minimal side effects. I will hope for the best.

The purpose of radiation according to the brochure I have read three times is that it kills any remaining cancer cells "by causing the production of "free radicals". This process changes the DNA of cancer cells and prevents them from reproducing. The cancer cells die when they can no longer multiply and the body naturally eliminates them. This is another important step in my treatment plan.

I found a place to park and was early enough to go downstairs to the cafe to get a Peet's mocha. I suppose it is silly to be nervous but that is how I felt. I drank half of my mocha, pitched the rest and headed to the elevator to take me to the radiology department in the basement.

I signed in and worked on a crossword puzzle for ten minutes in the waiting area then was brought in to meet the doctor. She was friendly, we chatted for a few moments then she quickly took me through some important paperwork. I had to sign four different releases regarding my treatment. Then I was taken to a changing room and put on a gown. After a short wait in another waiting area, I was ushered in to a coolish room with a number of imposing machines where I met the technician, Fritz. My doctor brought me a welcome warm blanket.

 The tech's job was to get me precisely positioned then  give me some permanent tiny marks like dots which will aid the technicians so that my radiation is given every time in the precisely correct area. I was placed on my back on a narrow table, knees raised  and arms overhead. I was jostled back and forth  re-positioned and had to lie still which is not easy for me. Eventually the technician made a special pillow to support my neck. It took around forty minutes and was rather uncomfortable but not painful.

The doctor kept coming in and checking on what the technician was doing . A machine swept over me to take measurements. After the technician was done with the measuring and marking I felt several pokes with a needle which left me with several tattoos...just tiny dots (no butterflies darn!). The doctor and technician said I did a "good job" though I am not sure what they really meant.

As I was leaving the room, the technician confirmed for me again what I had previously heard. My radiation oncologist is considered to be one of the five best in the United States and is also known for being extremely kind and having a great bedside manner. Once again our decision to stick with UCSF despite the hassle of having to get to the city seems to be the right one, and I was in the best hands.

The final part of the preparation for the radiation was a cat scan.  I was set up in a different room but  positioned exactly as I had been before. It will be the results of the previous measurements and cat scan which will give my doctor the information about where the radiation needs to be
directed, and she will devise her treatment plan working with a physicist and dosimetrist. Next week I will come back for a test run before the radiation will start. My treatments will be five days a week for five weeks.

I'm feeling well, starting to attend events again and look forward to a visit from my brother and family from Los Angeles this weekend. They have been tremendously supportive to me over these last months and I am really excited to see them My sister-in-law Judy, a surgeon herself, called me  every few days to check on me. She has told me that  my experiences have given  her insights on cancer treatment from a patient's perspective. I'm cooking up a storm as my daughters and their families will be joining us for a huge Shabbat lunch.

I'm still waiting (going on three weeks) for  Covered California to inform Anthem I am a woman, not a man. I have called about this to Covered CA maybe four times and Anthem at least five times. I wish things like this wouldn't get me aggravated but they do. I wish I could say I have changed and little stuff doesn't bother me.  I'm working on it...I have a long way to go.

Tuesday, February 3, 2015

Paradise Postponed

Wish I could say I have a great tan and we enjoyed our time in Maui drinking mai tais on the beach... but unfortunately we did not go. I had a stubborn upper respiratory virus, and though it was not the full blown flu, it was enough to keep me feeling under the weather the entire week. I am still coughing and blowing my nose constantly. It seems that every other person I talk to is recuperating from some form of a virus or flu and many have worse symptoms.

Jeff and I made the decision early on in the week to not go which was good. My doctor left it up to me, but once I saw that I kept getting a low-grade fever late in the day, I knew that I was not going to be ready to get on a plane last Friday. We cancelled as of Tuesday afternoon and had no regrets especially since I was still not well through the weekend.

We had taken out insurance, and I just filled out all the forms (11 pages!) and hope to get reimbursed for the portion that was taken out as penalties by the airline and hotel.

We are really doing fine and Jeff didn't let me get bummed over this.  Ironically he sensed we were not going to make it on this getaway. As I said before, this is a little setback, and we have been fortunate to have made many trips in our forty three years of marriage so we know that there will be many other vacations to enjoy. Jeff is thinking about a cruise....I'd be happy with a weekend in Calistoga at our favorite Napa Valley resort.

I purposely decided to keep my medical insurance exactly as it had been last year to avoid any glitches, as I had my share of aggravation last year until things were straightened out with Anthem. Whew....I thought everything was going to be easy, that is until I discovered that for some reason Covered California had me down on my application as a man.

I found this out by chance when I saw Anthem had rejected one of my claims because of this discrepancy.  Since I know I have not changed my sex, this was a small clerical error.  However, nothing is small, and it will probably take two weeks to get fixed. A change has to be sent electronically. It would be too easy for someone at Covered California to call Anthem and say there has been an error. It doesn't work that way. I hope when I make it to Medicare at the end of this year, things will be easier and go smoother. I won't be with either Covered California or Anthem.

Next week is my first appointment to get set up for radiation. This will be a totally new experience and I will report on what it is all about. From what I have heard, it involves very precise measuring so that the radiation will be pinpointed.

I still have my moments on the emotional roller coaster because more than anything I want to feel well and strong again. I have to keep in mind that I am still recuperating from the harsh effects of the chemotherapy, and I have to be patient with myself. I'm grateful for all the good days and times...walking around Lake Merritt on a crisp morning, going out for breakfast with Jeff, and enjoying my grandchildren, Elijah Behr and Yeshaya who get cuter by the minute.  I love to hear their antics and progress sitting up and crawling and getting their first teeth.

 Every day I check my hair waiting for it to really start growing...hopefully it will soon. I think it will symbolize me getting back to me....

Tuesday, January 27, 2015

Almost Paradise

Just hit the four week marker from my last chemo. My immune system should be getting back to normal and stronger. However last Friday I came down with a virus. Fortunately it is not the full blown flu, a that has hit so many people. Anything I pick up now is a bit more worrisome, but today I feel like I am on the mend and do not have any fever. I saw my doctor yesterday, and he said to wait until tomorrow to decide to see how I am doing.

I had already kissed off our trip to Maui. We are supposed to leave on Friday and I had resigned myself  that this trip was just not happening. Today so far I see that we might still go and if I can get through the day with no fever or other symptoms popping up, things  are looking up. Jeff and I are rather laid back about all this for two reasons. We have been through so much in the last months that Maui or no Maui doesn't seem that important. We were also smart and took out insurance for this trip which we normally don't do.

Before I got the virus, I was doing great and starting to get back to exercise at my club. I even took my first zumba class last Friday but couldn't get through the whole class. I attributed it to not being fully back to my pre-chemo strength and endurance but I know now that the virus was brewing. By the time I got back from class, I had chills and had to rest in bed.

I keep looking for signs that I am getting back to my old self. Every day I check in the mirror for new fringe. I am really looking forward to my hair starting to come back in the next weeks. I will also enjoy my new eyebrows and eyelashes. I wish I could speed up that process, but it will take time. How I have learned from this whole ordeal. Pre-chemo the thought of being bald seemed devastating, but once I was enveloped in the difficulties of the chemo and the unexpected side effects, baldness went way down on my list of concerns. In face it became irrelevant.

It is fun to think of whether my  new hair will be a different color or texture which sometimes happens.  Between my wigs, caps, hats,creative head coverings and  a little make up, I have managed well and tried to look my best.

Radiation will start later in February. Some of you have offered to drive a day to SF.I will put out an email later when I know my schedule. I have also figured out the best BART/Muni schedule to SF.

I will keep you posted...next blog from Maui (or Oakland!!)

Friday, January 16, 2015

Back to Life

It is good to feel I am getting back to somewhat of a normal life again. This week for the first time in months I got together with my mahjong crew to spend a fun afternoon. I am a latecomer to mahjong and only took it up in the last couple of years. Many of my friends have been playing for a long time and urged me to learn the game but I resisted. I kept associating it with gossipy old ladies sitting around  a card table, but I have been pleasantly and surprisingly proved wrong.

I find the game to be challenging, and I am still learning strategy. Every year the particular card,   with the various hands we try to make, changes so it keeps the game fresh. The best part is getting together with friends catching up on what everyone is doing and having some laughs. Some days I can't win a single game and other days I am "lucky." That is how it goes. The past months with my debilitating chemo, I was not able to play so I am delighted to be back.

I had another check up with my oncologist whom I now don't have to see for four months (yeah!). Another part of my treatment plan, besides the surgery,  the chemotherapy and the upcoming radiation is a drug that I have started taking. It is part of a special class of drugs to further fight the cancer. It is a tiny pill but like everything can have side effects. So far, so good... I am doing well with it. However, it does cause bone weakening so the doctor said I need to have a special bone strengthening infusion every six months.

 I had it today and went up to one of the infusion centers again. It was the same place I had my last chemo and I was hoping not to be in those rooms again but I needed to get this treatment. It was only fifteen minutes, and I was glad to leave there for hopefully a long time.

This week I also took advantage of two of the services the breast cancer center at UCSF provides as resources for cancer patients. I attended a class on nutrition last  Wednesday night and Jeff shlepped along with me. It was very worthwhile and gave me some guidelines for nutrition to further enhance my recovery The recommended diet is heavily plant based meaning my diet should be primarily vegetables and fruits with small amounts of meats, poultry, dairy products. With the effects of chemo, sometimes just eating anything at all, chicken soup, ice cream or oatmeal was the most I could stomach and salads and fruits and vegetables have not been palatable.

There are many studies and theories for post cancer patients and I suppose the path of moderation is still the best way to go. I will try to cut down on sugar which will be a challenge since I have a serious sweet tooth. One of the class participants asked about alcohol. Here also moderation seems to be the most important guideline (Yikes, no one wants to give up everything enjoyable!!) One article I read say no soy but the nutritionist encouraged soy so I am back to tofu. I found out that I need to take regular calcium and Vitamin D.

Ii also met with an exercise counselor this week. She does nothing but work with cancer patients and this too was very interesting and helpful. The bottom line is that I need to get active again and try to do something, even just walking, almost on a daily basis. She also recommended balance exercises strength training and taking time for relaxation. Fortunately I belong to a gym which has everything I need.It just requires me to get off my tuches and go there. She said that the zumba class that I had been taking before I started chemo was terrific and hit many of the areas that I need to work on.

What I realized this week is that cancer recovery is a serious business, and I need to be an active participant in seeking the proper  nutrition as well as maintaining my exercise program. My best exercise this week was taking my grandson Shaya for a long walk . He was a little doll and was chilling in his stroller enjoying his neighborhood and not making a peep during our walk.Walking with him also counts towards my daily exercise!