I want to preface this blog post by saying I have had a wonderful week. I am almost afraid to put those words down in black and white. Our children visiting from Israel were here for the weekend and we celebrated Chanukah.
My three grandchildren from Israel are so full of life. Each has a strong personality. Atara "Ati", the oldest, almost nine, asked questions about my treatment and seemed to understand quite a lot. She loves gymnastics and knows so much Torah that she floors me. Eliana, "Luli",six, tells me she prays for me every day. I was very overcome by her sincerity. She is a riot and keeps us entertained with her elaborate modern dances and funny faces. The little guy, Shmaya, age four, can't stop kissing me. Jeff made him pancakes on Sunday morning at 5AM. He is on the move constantly and reminds me of his Abbah. It won't be long until he will be doing computer programming
One night they all came in to bed with me for cuddling. They are very sweet kids and it is nice that in Israel the emphasis is not on Chanukah gifts so they were not expecting piles of presents. Of course they ended up getting inundated with gifts from their grandparents and extended family anyway.
Last Saturday the whole family hung out. The son-in-laws shared beers and good food. The sisters caught up with each other. The babies were entertained by the older kids. Ati and Luli played Monopoly and cards. Jeff kept checking to see if I was OK. It was almost overwhelming for us with what we have been through to be able to enjoy this rare event and for me to feel well through it all.
Sunday we all went to another Chanukah party given by my cousin's daughter Kimberly and her husband Vlad with even more adorable little ones there and their parents, my nieces and nephews and cousins. I was thrilled to enjoy the chaos of the kids, the yummy food and drink.
In one of my earlier posts I said I would share my Anthem Blue Cross saga. I'll start at the end of it. Once all my issues were straightened out and I paid my deductible, they have paid everything without question. My bills are considerable. Just the special shot I take the day after chemo is $6,000!! That is not a typo. This shot is what boosts my white cell count, and I will have taken eight of them by next week.
This all began when somehow I signed up for Covered California through Anthem Blue Cross. I have been a Blue Cross member forever and ended up with Covered CA even though I was not eligible for subsidies. However, I soon realized when I researched surgeons that the entire Sutter Health organization of doctors in the East Bay did not accept Covered CA and Anthem. This also meant that two of my long time Oakland doctors dropped me because they did not accept Anthem and Covered CA.When I figured out I could not find a top surgeon in Oakland, I thankfully discovered that the UC system did accept Covered CA and Anthem.
In a way, I decided that the fact that I was thrust in the UCSF system was meant to be and right from the start I was not going to second guess myself nor seek second opinions. UCSF, as I have written previously, has state of the art treatment and world class doctors who are researchers as well as teachers.
So I was in the UCSF system and thought everything was OK. Three days before my surgery in August I got a call saying the Covered CA had dropped me. I almost had a heart attack...no insurance and surgery in a few days which could be cancelled?!! Then I got on the phone and found out that was some sort of screw up. It took me begging, pleading and practically crying to make sure I was re-instated with Covered CA and Blue Cross in time for my surgery.
Then I got another call saying that I had not paid my premiums to Anthem. One of the biggest issues I had with Anthem was never being able to reach the same person twice. I was angry because my premiums were automatically deducted from my checking account. I could see where they had been taken out. Again I was on the phone for marathon sessions being promised by this agent and that agent that I would be called back, but it never happened. There was no follow up. On top of dealing with the emotional whiplash of cancer, I had to contend with insurance issues. I had heard of people having nightmare insurance problems. Was this happening to me now too? For sure I did not need this aggravation.
Then I got a letter stating that my policy was going to lapse. I was furious because my $629/month had been deducted, and I had the proof. This time I was bound and determined to stay on the phone until this was resolved. I got on the phone at 8AM and told myself I would hang on the phone all day if I had to. I demanded to speak to a supervisor and finally got someone who listened to the entire saga and it was a long one. What she determined after investigating was that my payments had been applied to PEDIATRIC DENTAL.
Great, I have no kids at home and I'm paying for someone to take their kids to the dentist using my entire premium which was supposed to be a minimal mandatory charge mandated by Obamacare. Obviously my premiums had been misapplied. Then she said that I would be sent a refund. Uh-oh...a refund? I was very nervous that Anthem would say I have no coverage and my payments were overdue and my medical bills would be unpaid or that my treatment would be delayed.
She assured me that she would handle this properly. She took a three month payment over the phone using my credit card which would make my account current. Then she set me up on the correct automatic deduction program which would not go to pediatric dental. I almost didn't believe that this frustrating drama was finally going to be set right but it was.She said I was to cash the refund check though I was almost afraid to do so.
What I have since found out over these last months is that coverage changes all the time. Anthem Covered CA was accepted at my recent emergency
visit to Summit in Oakland even though not all the doctors I saw there accepted my insurance. I was able to appeal
to Anthem because if the hospital accepted me then I had a legitimate
claim to have the doctors take my insurance as well which is what happened. If
you think this is a little crazy you are absolutely correct. I think the whole system is still in flux and changing rapidly.
Now with the renewal which had to be done in mid December, Jeff and I decided to leave everything exactly the way it is. We are afraid of making any changes. In 2015 I will be 65 (oy) and will go to Medicare when I will be making major changes.
One week from today is my last chemo. I am literally holding my breath to make it to that day and stay the way I am with no other side effects. I will keep you posted.. Happy Holidays.
Tuesday, December 23, 2014
Sunday, December 14, 2014
Another unexpected twist; and looking forward to tomorrow
This Tuesday I will hopefully have my seventh chemo treatment, with only one remaining. I say "hopefully" because my detour took an unexpected twist last week when I came down with pneumonia. Fortunately it was caught early and I am doing much better. I know I am better because I went out shopping today and got some things in preparation for Chanukah.
This afternoon I took out all my Chanukah decorations and put them up in the family room and dining room. I have stuff from years ago though some years if there were no kids around, Jeff and I didn't bother to put anything up. This will be a special Chanukah. We will have all five of our grandchildren in one place. Oops I forgot that having, their parents, my three daughters and their husbands all together, our whole family, will be the best present for me and Jeff.
We have not seen the three grandchildren from Israel for almost a year.That is a very long time not to see the children, as we were supposed to be there for Rosh Hashanah but had to cancel. With Skype, we see them often and amazingly we feel very close with them as they do with us. Atara called us before they left for the airport and she was bubbling with excitement.
Normally they stay with us first and then move to their Palo Alto grandparents. This time they are going there first and will be with us for Shabbat if I'm OK.
Tomorrow morning they arrive with their (hero) dad, my son in law, Andy on a Jet Blue flight. Believe me, it is not easy to work and get three children where they need to be. Devora had sitters lined up and friends to help and meals prepared, but Andy, their Abba, is amazing.
Devora, who arrived ten days ago, wanted to have some time with me. She was a real comfort when I had some tough days. She has a very spiritual, comforting way about her and knew the right words to soothe her mom who needed extra TLC.
It is not uncommon to catch something while you are on chemo as your are very susceptible with your white cell count compromised. My oncology nurse gave me the rules when we first met. If I were to get a fever, I had to call in to the office immediately. They don't fool around.
Last Tuesday night I had a low fever but my Wednesday morning it was higher and I had an annoying dry cough. When I called in she said, "I hate to tell you this, but you have to go to the ER." I couldn't believe it...not again. As I said before, I was healthy before I got cancer, never in the ER or the hospital. I asked Robin, my wonderful oncology nurse, does everyone get all the complications I have had. She said "no." I know there is a lesson in all this for me which is that I really am not in control of my situation.
Jeff and I got ready and headed to UCSF on Parnassus. I was not a happy camper thinking I would have to stay overnight. I packed a few things. The skies were gray, laden with the huge rain storm that was coming which we had been hearing about for days. I didn't say much on the ride over. Jeff would take my hand. This has been a tough four months just as much for him as me.
The young doctor who checked me sent for a chest X-Ray. He did not hear the pneumonia but the radiologist saw it on the X-ray. Fortunately because I was not looking too bad I was sent home with the antibiotics.
He was very strict though that I had to see my own doctor in Oakland to be re-checked at the end of the week, and if I did not get better to head straight to the hospital. Oy....I went home, got in to bed. Thursday was the perfect day to stay home with the pounding rain that went on all day. After two days I started to feel much better. I am getting sick of tea and honey.
I am hoping that Tuesday is a "go." If I were betting, I would say it will be. In the mean time I am very excited to go to the airport tomorrow to see my crew. Devora has missed them a lot but I do think she has also enjoyed her quiet time to read, pray and do Feldenkreis and all the things she enjoys.
Wishing everyone a great holiday season...I'll keep you posted.
This afternoon I took out all my Chanukah decorations and put them up in the family room and dining room. I have stuff from years ago though some years if there were no kids around, Jeff and I didn't bother to put anything up. This will be a special Chanukah. We will have all five of our grandchildren in one place. Oops I forgot that having, their parents, my three daughters and their husbands all together, our whole family, will be the best present for me and Jeff.
We have not seen the three grandchildren from Israel for almost a year.That is a very long time not to see the children, as we were supposed to be there for Rosh Hashanah but had to cancel. With Skype, we see them often and amazingly we feel very close with them as they do with us. Atara called us before they left for the airport and she was bubbling with excitement.
Normally they stay with us first and then move to their Palo Alto grandparents. This time they are going there first and will be with us for Shabbat if I'm OK.
Tomorrow morning they arrive with their (hero) dad, my son in law, Andy on a Jet Blue flight. Believe me, it is not easy to work and get three children where they need to be. Devora had sitters lined up and friends to help and meals prepared, but Andy, their Abba, is amazing.
Devora, who arrived ten days ago, wanted to have some time with me. She was a real comfort when I had some tough days. She has a very spiritual, comforting way about her and knew the right words to soothe her mom who needed extra TLC.
It is not uncommon to catch something while you are on chemo as your are very susceptible with your white cell count compromised. My oncology nurse gave me the rules when we first met. If I were to get a fever, I had to call in to the office immediately. They don't fool around.
Last Tuesday night I had a low fever but my Wednesday morning it was higher and I had an annoying dry cough. When I called in she said, "I hate to tell you this, but you have to go to the ER." I couldn't believe it...not again. As I said before, I was healthy before I got cancer, never in the ER or the hospital. I asked Robin, my wonderful oncology nurse, does everyone get all the complications I have had. She said "no." I know there is a lesson in all this for me which is that I really am not in control of my situation.
Jeff and I got ready and headed to UCSF on Parnassus. I was not a happy camper thinking I would have to stay overnight. I packed a few things. The skies were gray, laden with the huge rain storm that was coming which we had been hearing about for days. I didn't say much on the ride over. Jeff would take my hand. This has been a tough four months just as much for him as me.
The young doctor who checked me sent for a chest X-Ray. He did not hear the pneumonia but the radiologist saw it on the X-ray. Fortunately because I was not looking too bad I was sent home with the antibiotics.
He was very strict though that I had to see my own doctor in Oakland to be re-checked at the end of the week, and if I did not get better to head straight to the hospital. Oy....I went home, got in to bed. Thursday was the perfect day to stay home with the pounding rain that went on all day. After two days I started to feel much better. I am getting sick of tea and honey.
I am hoping that Tuesday is a "go." If I were betting, I would say it will be. In the mean time I am very excited to go to the airport tomorrow to see my crew. Devora has missed them a lot but I do think she has also enjoyed her quiet time to read, pray and do Feldenkreis and all the things she enjoys.
Wishing everyone a great holiday season...I'll keep you posted.
Wednesday, December 3, 2014
Treatment #6; plans for Radiation
I just had my sixth chemo yesterday, the second of the second drug which as the oncologist said would be easier for me. I was incredibly grateful that although I had a couple of bad days, most of the two weeks was tolerable without serious side effects.
It is interesting with this drug, Taxol, that the initial concern is having an allergic reaction. Before the infusion even begins, I receive several anti allergy drugs, including a Benadryl IV which makes me rather sleepy. What happened the last time was that by the third day when those drugs wore off I crashed and was extremely tired. Perhaps now that I know what to expect, it won't be as bad.
Once again, I was reminded how cancer hits all ages. Two of the women sharing the infusion room with me were young, one in her early twenties. It makes me realize that my situation, though not pleasant, is not half as challenging as faced by these younger women.
Tomorrow I get a special delivery of TLC as my daughter Devora arrives from Israel in the morning. This is the first time she left her three children and traveled here by herself. She is not a good traveler, reacts to jet lag for days so this is a big venture on her part. I am grateful we will have some time to be together and catch up without the troops.
My son in law Andy is an amazing Abba. He arrives with the children in about ten days, the day before Chanukah. Fortunately he will have some help on the plane from a good friend who will travel with them. The older girls are used to the long flight and now that Shmaya is getting older, he should also be much easier. When he was smaller, Andy walked him from one end of the plane to the other sometimes for hours to get him to fall asleep.
They normally stay with us for the first week and I get up with them at 2AM when they are wide awake with jet lag, but this time they are headed to their wonderful Palo Alto grandparents first.
I will miss that crazy middle of the night ruckus when I am making breakfast, cheerios and toasted English muffins, and we are watching Net Flix cartoons.Hopefully, they will be able to spend some time at our house during their second week when I will be recuperated from #7 treatment.
This week Jeff and I met with our radiation oncologist at UCSF. I was nervous about what the plan would be. Jeff and I had also talked about possibly shifting the radiation to Oakland.
Initially I could not get my cancer surgery in Oakland because none of the top doctors would accept my insurance. I immediately started pursuing the UCSF system, who would take my insurance.I know that it was the best thing I could have done. I have never second guessed any decisions nor have I felt the need to seek out second opinions.
The reason I considered moving to Alta Bates for the radiation was simply the ease of driving to Berkeley for five weeks every day rather than SF. When I found out the name of the doctor at UCSF who would see me, Dr. Barbara Fowble, I looked up her resume. She is world renowned and patients come to her from all over. She is a specialist in only breast cancer radiation. She is also listed as one of the best doctors in the United States.UCSF doctors as I have said before are also immersed in teaching, clinical trials and publishing their findings.
We headed down to the basement offices at UCSF which we found to be stuffy and dark. Yuck. I was not looking forward to this but I knew it was the next step and had to be done. I stripped off my jacket and was gulping water from my bottle trying to ease my nerves.
We were ushered in to a small treatment room. When we met her, she was friendly, straightforward and ready to answer any questions. She explained the statistics and clinical findings have proved that radiation greatly reduces the risk of the cancer recurring. My course of treatment is the standard five weeks. My right breast and collar bone area will be radiated. It is a very precise procedure and everything is mapped out, then sent to a physics lab which figures out the path of the beams. I have two planning sessions before I even start. The actual daily radiation takes only twenty minutes, most of the time spent in positioning me. I get tiny tattoos to mark where the radiation is to go. No, they will not be butterflies...
There will be a four to six week break between my last chemo and the radiation to give me time to recuperate. The biggest effect of radiation will be some tiredness and a sunburn effect which will go away. During radiation, I am not supposed to have any antioxidants which interfere with the free radicals...don't ask me what this means. I will receive special creams to soothe my skin,. Of course there are other possible side effects which I don't want to think about.
At first I thought the UCSF doctor could direct the doctor at Alta Bates but that is not how it works. I would have to start in from scratch with her. It took us about one minute to realize how dumb that would be. AT UCSF everything is already in place; all my films, records, test results and everything works like a well-oiled machine. I will figure that I have a five week job...to get my radiation in San Francisco and will probably drive, take BART or have some friends drive me now and then. I can also stay over at my sister's house if I want.
Two more chemo treatments...I am finally seeing the light at the end of a very dark tunnel. I pray for the rest of the time to be uneventful, enjoying my family in between the treatments and no major surprises and setbacks.
It is interesting with this drug, Taxol, that the initial concern is having an allergic reaction. Before the infusion even begins, I receive several anti allergy drugs, including a Benadryl IV which makes me rather sleepy. What happened the last time was that by the third day when those drugs wore off I crashed and was extremely tired. Perhaps now that I know what to expect, it won't be as bad.
Once again, I was reminded how cancer hits all ages. Two of the women sharing the infusion room with me were young, one in her early twenties. It makes me realize that my situation, though not pleasant, is not half as challenging as faced by these younger women.
Tomorrow I get a special delivery of TLC as my daughter Devora arrives from Israel in the morning. This is the first time she left her three children and traveled here by herself. She is not a good traveler, reacts to jet lag for days so this is a big venture on her part. I am grateful we will have some time to be together and catch up without the troops.
My son in law Andy is an amazing Abba. He arrives with the children in about ten days, the day before Chanukah. Fortunately he will have some help on the plane from a good friend who will travel with them. The older girls are used to the long flight and now that Shmaya is getting older, he should also be much easier. When he was smaller, Andy walked him from one end of the plane to the other sometimes for hours to get him to fall asleep.
They normally stay with us for the first week and I get up with them at 2AM when they are wide awake with jet lag, but this time they are headed to their wonderful Palo Alto grandparents first.
I will miss that crazy middle of the night ruckus when I am making breakfast, cheerios and toasted English muffins, and we are watching Net Flix cartoons.Hopefully, they will be able to spend some time at our house during their second week when I will be recuperated from #7 treatment.
This week Jeff and I met with our radiation oncologist at UCSF. I was nervous about what the plan would be. Jeff and I had also talked about possibly shifting the radiation to Oakland.
Initially I could not get my cancer surgery in Oakland because none of the top doctors would accept my insurance. I immediately started pursuing the UCSF system, who would take my insurance.I know that it was the best thing I could have done. I have never second guessed any decisions nor have I felt the need to seek out second opinions.
The reason I considered moving to Alta Bates for the radiation was simply the ease of driving to Berkeley for five weeks every day rather than SF. When I found out the name of the doctor at UCSF who would see me, Dr. Barbara Fowble, I looked up her resume. She is world renowned and patients come to her from all over. She is a specialist in only breast cancer radiation. She is also listed as one of the best doctors in the United States.UCSF doctors as I have said before are also immersed in teaching, clinical trials and publishing their findings.
We headed down to the basement offices at UCSF which we found to be stuffy and dark. Yuck. I was not looking forward to this but I knew it was the next step and had to be done. I stripped off my jacket and was gulping water from my bottle trying to ease my nerves.
We were ushered in to a small treatment room. When we met her, she was friendly, straightforward and ready to answer any questions. She explained the statistics and clinical findings have proved that radiation greatly reduces the risk of the cancer recurring. My course of treatment is the standard five weeks. My right breast and collar bone area will be radiated. It is a very precise procedure and everything is mapped out, then sent to a physics lab which figures out the path of the beams. I have two planning sessions before I even start. The actual daily radiation takes only twenty minutes, most of the time spent in positioning me. I get tiny tattoos to mark where the radiation is to go. No, they will not be butterflies...
There will be a four to six week break between my last chemo and the radiation to give me time to recuperate. The biggest effect of radiation will be some tiredness and a sunburn effect which will go away. During radiation, I am not supposed to have any antioxidants which interfere with the free radicals...don't ask me what this means. I will receive special creams to soothe my skin,. Of course there are other possible side effects which I don't want to think about.
At first I thought the UCSF doctor could direct the doctor at Alta Bates but that is not how it works. I would have to start in from scratch with her. It took us about one minute to realize how dumb that would be. AT UCSF everything is already in place; all my films, records, test results and everything works like a well-oiled machine. I will figure that I have a five week job...to get my radiation in San Francisco and will probably drive, take BART or have some friends drive me now and then. I can also stay over at my sister's house if I want.
Two more chemo treatments...I am finally seeing the light at the end of a very dark tunnel. I pray for the rest of the time to be uneventful, enjoying my family in between the treatments and no major surprises and setbacks.
Monday, November 24, 2014
Pancakes and Giving Thanks
My oncologist said the next four treatments would not be as rough as the first four. I am almost one week from the last treatment, and I would have to agree with him. Though I have had some hours of total wipe out when I don't want to get out of bed, I am gradually getting my strength and taking advantage of the moments when I feel good. Yesterday I woke up at 4:30AM thinking about pancakes.
That might not seem like a big deal but it is. It signifies I am getting my appetite back and what's more I told Jeff I wanted to go OUT for breakfast. He was so happy that I wanted to leave the house. Can I say again that my husband has been the ultimate trooper through all this ordeal. He encourages me, points out small victories and reminds me how much better I am relative to the last treatment.
We even get in a few laughs now and then. For example, if a side effect is listed and I get it then it is OK because it is something to be expected. This round one of the side effects has been muscle aches. When that started, my body felt like a pin ball machine. I kept getting strange pings in my joints from my ankles to my wrists that lasted a few seconds. But this was on the list...so we didn't freak out. Thankfully a few Advil seems to help this one.I'm also no longer suffering from the canker sore that took more than two weeks to heal. That was difficult.
Yesterday besides having breakfast out, one oatmeal pancake with blueberry sauce at Lu and Lil's,we also walked at Lake Merritt for twenty minutes. It was a gorgeous, crisp fall day, and it was great to be outside. My oncology nurse tells me that walking is crucial for me and sometimes I drag myself out of bed and walk from my kitchen through the living room back and forth and up and down the stairs if I can't get out.
This is Thanksgiving week (and my birthday Wednesday) I always love this time of the year. I think one of the reasons is that for my mom, an immigrant from Hitler's Germany, Thanksgiving was the one holiday that our family totally embraced as Jewish Americans. My mom decorated the table with little Pilgrim tchotchkes and prepared a sumptuous meal, everything from scratch.When we were young, visiting east coast cousins would join us, especially my cousin Uri who was studying at Cal Tech.
After Jeff and I met, we joined our two families and celebrated together. Our first Thanksgiving together I turned twenty We had just gotten engaged.. One of my favorite photos (though Jeff does not like it) is me with longish blonde hair and him with big black glasses wearing a pink shirt. We were so young, smiling broadly.Where have the years gone?
I love doing the holiday as well researching recipes, decorating with my box of Thanksgiving goodies and enjoying the holiday bustle just like my mom did. This year however I will be grateful just to show up and bring a few side dishes. My wonderful sister has taken over my usual job of preparing the meal but we are all contributing so she does not have to do it all.
I am so appreciative for the steady stream of calls, cards, emails, goodies, and support I continue to receive from all of you. I wish everyone a wonderful holiday. Treasure the good times.I realized the other day that this ordeal will make me stronger. I will be a different person and pray to be a better one with a renewed chance to do good.
That might not seem like a big deal but it is. It signifies I am getting my appetite back and what's more I told Jeff I wanted to go OUT for breakfast. He was so happy that I wanted to leave the house. Can I say again that my husband has been the ultimate trooper through all this ordeal. He encourages me, points out small victories and reminds me how much better I am relative to the last treatment.
We even get in a few laughs now and then. For example, if a side effect is listed and I get it then it is OK because it is something to be expected. This round one of the side effects has been muscle aches. When that started, my body felt like a pin ball machine. I kept getting strange pings in my joints from my ankles to my wrists that lasted a few seconds. But this was on the list...so we didn't freak out. Thankfully a few Advil seems to help this one.I'm also no longer suffering from the canker sore that took more than two weeks to heal. That was difficult.
Yesterday besides having breakfast out, one oatmeal pancake with blueberry sauce at Lu and Lil's,we also walked at Lake Merritt for twenty minutes. It was a gorgeous, crisp fall day, and it was great to be outside. My oncology nurse tells me that walking is crucial for me and sometimes I drag myself out of bed and walk from my kitchen through the living room back and forth and up and down the stairs if I can't get out.
This is Thanksgiving week (and my birthday Wednesday) I always love this time of the year. I think one of the reasons is that for my mom, an immigrant from Hitler's Germany, Thanksgiving was the one holiday that our family totally embraced as Jewish Americans. My mom decorated the table with little Pilgrim tchotchkes and prepared a sumptuous meal, everything from scratch.When we were young, visiting east coast cousins would join us, especially my cousin Uri who was studying at Cal Tech.
After Jeff and I met, we joined our two families and celebrated together. Our first Thanksgiving together I turned twenty We had just gotten engaged.. One of my favorite photos (though Jeff does not like it) is me with longish blonde hair and him with big black glasses wearing a pink shirt. We were so young, smiling broadly.Where have the years gone?
I love doing the holiday as well researching recipes, decorating with my box of Thanksgiving goodies and enjoying the holiday bustle just like my mom did. This year however I will be grateful just to show up and bring a few side dishes. My wonderful sister has taken over my usual job of preparing the meal but we are all contributing so she does not have to do it all.
I am so appreciative for the steady stream of calls, cards, emails, goodies, and support I continue to receive from all of you. I wish everyone a wonderful holiday. Treasure the good times.I realized the other day that this ordeal will make me stronger. I will be a different person and pray to be a better one with a renewed chance to do good.
Sunday, November 9, 2014
Alive and Well...sort of
In case you have been wondering if I have been to Maui watching gold and purple sunsets and drinking frothy pina coladas with Jeff next to me lazing on recliner you are wrong. I can only wish that some day soon that is where we will be.
For those of you following along my bumpy detour, this segment is difficult so thanks for hanging in.
My fourth chemo treatment which was two weeks ago coincided with the Giant's trouncing by Kansas City royals. I was trounced too, as I was hit extremely hard by this round. Unfortunately I landed up in the hospital for two day at the end of the week for some hydration but thankfully there was nothing else seriously wrong with me. I went to Summit Hospital in Oakland which has been completely re-done. Everyone gets a private room which is nice. The nurses were kind and competent.
I hope I never have to go back because the hospital is the worst place to rest and feel better. It is kind of a vicious circle. I have to be on an IV for fluids, then have to keep waking up to go to the bathroom and shlep my IV pole into the bathroom with me. Then an hour later my very sweet nurse, Caroline, with a Caribbean lilt to her voice apologetically wakes me up to take my vitals. Then I fall back asleep only to wake up to go to the bathroom again. You get the picture?
One of the worst parts of this round was that my appetite went kaput. I'm slowly getting back to eating. This is not my idea of losing weight believe me.The highlight of my hospital diet was a red popsicle.
This time I did not need blood though at first they put me on an antibiotic for a possible stomach thing which I ended up not having. I was glad to throw away those bitter and difficult to swallow pills.
I came home on Tuesday very weak and have been trying to re-coup day by day. The other new complication was developing a whopper canker sore on my tongue which unfortunately is a rather typical side effect of chemo.
I have developed a whole litany of ways to alleviate the pain and rinse frequently with warm water and salt and baking soda, sometimes with hydrogen peroxide. I have tried honey, milk of magnesia, and have a special magic thick pink rinse prescribed by the oncologist's office which has some xylocane in it. I was on pain pills for a day which I hate because they mess up my stomach. I have been taking Advil regularly.
In short, you could say I was a mess. Jeff catered to any whim I thought might help including Odwalla Protein drinks which are not bad. We have had to turn down invitations to parties, dinners, baby showers.
My sister who is my steady cheerleader yesterday came armed with two shopping bags full of soft foods; chocolate pudding, sherbet ice cream. rice pudding and jello. I have been living on chicken soup, some I had made, some my sister brought.
This has been a difficult two weeks. It is unbelievable how painful these sores can be.Anyone who has suffered with them will know what I am talking about.
But today I am feeling better and the good news is that my oncologist postponed my next treatment for a week to give me a chance to get my strength back.
Thanks for friends who have brought food, who call to check on me, who send emails and cards. This support sustains me. My long time housekeeper Vilma told me she prayed for me. I was so touched I cried.
I am hoping the next four treatments won't be as rough. That is what I keep hearing. I will cling to that hope but won't believe it until I experience it myself. My daughter Devora arrives early December for the first time without her kids. I look forward to having her TLC.
So things are looking up again; I will get through this. I will be on that beach in Maui someday soon.
For those of you following along my bumpy detour, this segment is difficult so thanks for hanging in.
My fourth chemo treatment which was two weeks ago coincided with the Giant's trouncing by Kansas City royals. I was trounced too, as I was hit extremely hard by this round. Unfortunately I landed up in the hospital for two day at the end of the week for some hydration but thankfully there was nothing else seriously wrong with me. I went to Summit Hospital in Oakland which has been completely re-done. Everyone gets a private room which is nice. The nurses were kind and competent.
I hope I never have to go back because the hospital is the worst place to rest and feel better. It is kind of a vicious circle. I have to be on an IV for fluids, then have to keep waking up to go to the bathroom and shlep my IV pole into the bathroom with me. Then an hour later my very sweet nurse, Caroline, with a Caribbean lilt to her voice apologetically wakes me up to take my vitals. Then I fall back asleep only to wake up to go to the bathroom again. You get the picture?
One of the worst parts of this round was that my appetite went kaput. I'm slowly getting back to eating. This is not my idea of losing weight believe me.The highlight of my hospital diet was a red popsicle.
This time I did not need blood though at first they put me on an antibiotic for a possible stomach thing which I ended up not having. I was glad to throw away those bitter and difficult to swallow pills.
I came home on Tuesday very weak and have been trying to re-coup day by day. The other new complication was developing a whopper canker sore on my tongue which unfortunately is a rather typical side effect of chemo.
I have developed a whole litany of ways to alleviate the pain and rinse frequently with warm water and salt and baking soda, sometimes with hydrogen peroxide. I have tried honey, milk of magnesia, and have a special magic thick pink rinse prescribed by the oncologist's office which has some xylocane in it. I was on pain pills for a day which I hate because they mess up my stomach. I have been taking Advil regularly.
In short, you could say I was a mess. Jeff catered to any whim I thought might help including Odwalla Protein drinks which are not bad. We have had to turn down invitations to parties, dinners, baby showers.
My sister who is my steady cheerleader yesterday came armed with two shopping bags full of soft foods; chocolate pudding, sherbet ice cream. rice pudding and jello. I have been living on chicken soup, some I had made, some my sister brought.
This has been a difficult two weeks. It is unbelievable how painful these sores can be.Anyone who has suffered with them will know what I am talking about.
But today I am feeling better and the good news is that my oncologist postponed my next treatment for a week to give me a chance to get my strength back.
Thanks for friends who have brought food, who call to check on me, who send emails and cards. This support sustains me. My long time housekeeper Vilma told me she prayed for me. I was so touched I cried.
I am hoping the next four treatments won't be as rough. That is what I keep hearing. I will cling to that hope but won't believe it until I experience it myself. My daughter Devora arrives early December for the first time without her kids. I look forward to having her TLC.
So things are looking up again; I will get through this. I will be on that beach in Maui someday soon.
Wednesday, October 22, 2014
Sitting on the Sidewalk Monday morning
This post chemo #3 has been difficult. I have not been able to get back my energy as I had the other times. Monday I was determined to get off my butt and go for a walk with Jeff. My oncology nurse has encouraged walking, even two short walks a day are important.
As we headed up the hill I knew I did not feel well. Jeff was immediately ready to turn me around and go back home but before that I started to go down, I was feeling faint. He managed to get me across the street and sit me down on a curb. I blacked out for a new seconds. It was a strange sensation. He was talking to me and told me he was gently slapping my face. I remember feeling like I was sleeping and hearing his voice at the same time. It all happened very fast.
A neighbor driving by saw us in distress and immediately stopped her car. I had never met her. She asked if I needed a ride home and I got in her van. I told her I was reacting to the effects of chemo. She said her husband was under chemo now too. I couldn't believe it.
As soon as I got home, Jeff had me lay on our sofa. I called my oncology nurse and she did a quick assessment over the phone. I was not short of breath and was lucid though shaken. She spoke to my doctor and advised us to go to the UCSF emergency room on Parnassus Ave. in San Francisco for a complete workup.
We did not leave in a huge rush though I didn't even bring a toothbrush not expecting to stay overnight. Poor Jeff, I felt terrible to put him through all this drama. I laid down in the backseat with pillows under my knees. It had just rained so I was smelling that special earthy first rain on the sidewalk smell and watching the freeway go by from a strange backseat perspective. Jeff kept telling me to talk to him. He wanted to be sure I was alert.I don't even remember the silly conversation I tried to keep up.
We knew it was better to stick with UCSF since all my data and medical records are in their system. My oncology doctor had told them what kinds of tests I needed. I didn't have to wait to long in the emergency to get seen. I was lucky. I had my own private cubicle, room 9. As the day wore on, patients were left on gurneys for hours because there were not rooms for them. The doctors and nurses administered to them in the halls.
My nurse, Thomas, was extremely competent. I had many tests checking for infection, my heart, and g-d only knows what else. The good news was that nothing was showing up. My blood pressure was low and out of caution it looked like I would be spending one night.
I keep wondering how a previously healthy person can get messed up by chemotherapy in so many ways.
They had decided to keep me already by 4pm but I was not moved to my room until almost 8pm. This is the system at UCSF, great care but you have to be PATIENT. It is so interesting how UCSF, as a teaching hospital approaches everything. A team of doctors decided I would stay over night. Several doctors of the team came to speak to us.
The doctors look SO young. I can see I am getting older. They were very kind but the annoying part is one doctor might ask you the whole megillah story and the second doctor might do the same thing.
Jeff asked them the most important question. What made me pass out? They really did not have a pat answer. I think dehydration played a part and the fact that my hemoglobin count is quite low, a typical effect of chemotherapy. It was going to be a long wait until I would be moved to my room. Elana arrived to be with me and brought me a goodie bag with toiletries and magazines. I told Jeff to go home as he had been with me for hours. After Elana stayed with me for a while, I told her to go home too.
I was finally moved to my room around 8PM. Tuesday morning when the doctors came by they had decided that I should have a blood transfusion but could go home later in the day.The blood transfusion would give me a boost.
My nurses were caring and knowledgeable. I ordered food from a menu trying to eat though my appetite is iffy at best. The variety of food one can order varies greatly from Mexican to Asian to standard American fare. I drink constantly and had IV fluids going as well.
My sister Linda came around 9:30 to stay with me She is always encouraging and with her medical background asked the medical staff some questions. . I told Jeff to come in later since it would take a while until I got my transfusion. He arrived around around 12:30pm.
At around 2:30 I sent Jeff out to get some air and to locate me a chocolate ice cream bar. By the time he returned, I was hooked up at last for the blood.. At 5PM we entertained ourselves with the Giant's game and finally by around 6:00PM I was discharged.
I wish I could say, instant recovery from the blood, but I'm still taking it easy today. As hard as it might be to believe, at around 2:50 PM, almost 24 hours exactly from the start of my transfusion, I started to feel like myself.
The good news that my next treatment, #4 will take place next Tuesday as scheduled (hopefully barring any more surprises.) Number 4 means two things...I will be half way done and that is the end of the AC phase of the treatment.
Though this was an expected setback, just like the old Yiddish folktales things could have been worse. I could have been alone, fallen and hit my head, blah blah blah.
So I'm here, OK, determined to get though this and on with my life. I'm sustained by my little grandsons. Elijah just starting eating solids. Saul sent me a picture of him chowing down on carrots. They were everywhere...in his hair, in his feet, all over his face. I said he needs a HAZMAT suit. Little Yeshaya grows by the minute and has pinchable cheeks. He can't stop smiling and laughing.
From what I have heard, the last four treatments are different and somewhat easier. I can only hope and pray.
Go Giants.
As we headed up the hill I knew I did not feel well. Jeff was immediately ready to turn me around and go back home but before that I started to go down, I was feeling faint. He managed to get me across the street and sit me down on a curb. I blacked out for a new seconds. It was a strange sensation. He was talking to me and told me he was gently slapping my face. I remember feeling like I was sleeping and hearing his voice at the same time. It all happened very fast.
A neighbor driving by saw us in distress and immediately stopped her car. I had never met her. She asked if I needed a ride home and I got in her van. I told her I was reacting to the effects of chemo. She said her husband was under chemo now too. I couldn't believe it.
As soon as I got home, Jeff had me lay on our sofa. I called my oncology nurse and she did a quick assessment over the phone. I was not short of breath and was lucid though shaken. She spoke to my doctor and advised us to go to the UCSF emergency room on Parnassus Ave. in San Francisco for a complete workup.
We did not leave in a huge rush though I didn't even bring a toothbrush not expecting to stay overnight. Poor Jeff, I felt terrible to put him through all this drama. I laid down in the backseat with pillows under my knees. It had just rained so I was smelling that special earthy first rain on the sidewalk smell and watching the freeway go by from a strange backseat perspective. Jeff kept telling me to talk to him. He wanted to be sure I was alert.I don't even remember the silly conversation I tried to keep up.
We knew it was better to stick with UCSF since all my data and medical records are in their system. My oncology doctor had told them what kinds of tests I needed. I didn't have to wait to long in the emergency to get seen. I was lucky. I had my own private cubicle, room 9. As the day wore on, patients were left on gurneys for hours because there were not rooms for them. The doctors and nurses administered to them in the halls.
My nurse, Thomas, was extremely competent. I had many tests checking for infection, my heart, and g-d only knows what else. The good news was that nothing was showing up. My blood pressure was low and out of caution it looked like I would be spending one night.
I keep wondering how a previously healthy person can get messed up by chemotherapy in so many ways.
They had decided to keep me already by 4pm but I was not moved to my room until almost 8pm. This is the system at UCSF, great care but you have to be PATIENT. It is so interesting how UCSF, as a teaching hospital approaches everything. A team of doctors decided I would stay over night. Several doctors of the team came to speak to us.
The doctors look SO young. I can see I am getting older. They were very kind but the annoying part is one doctor might ask you the whole megillah story and the second doctor might do the same thing.
Jeff asked them the most important question. What made me pass out? They really did not have a pat answer. I think dehydration played a part and the fact that my hemoglobin count is quite low, a typical effect of chemotherapy. It was going to be a long wait until I would be moved to my room. Elana arrived to be with me and brought me a goodie bag with toiletries and magazines. I told Jeff to go home as he had been with me for hours. After Elana stayed with me for a while, I told her to go home too.
I was finally moved to my room around 8PM. Tuesday morning when the doctors came by they had decided that I should have a blood transfusion but could go home later in the day.The blood transfusion would give me a boost.
My nurses were caring and knowledgeable. I ordered food from a menu trying to eat though my appetite is iffy at best. The variety of food one can order varies greatly from Mexican to Asian to standard American fare. I drink constantly and had IV fluids going as well.
My sister Linda came around 9:30 to stay with me She is always encouraging and with her medical background asked the medical staff some questions. . I told Jeff to come in later since it would take a while until I got my transfusion. He arrived around around 12:30pm.
At around 2:30 I sent Jeff out to get some air and to locate me a chocolate ice cream bar. By the time he returned, I was hooked up at last for the blood.. At 5PM we entertained ourselves with the Giant's game and finally by around 6:00PM I was discharged.
I wish I could say, instant recovery from the blood, but I'm still taking it easy today. As hard as it might be to believe, at around 2:50 PM, almost 24 hours exactly from the start of my transfusion, I started to feel like myself.
The good news that my next treatment, #4 will take place next Tuesday as scheduled (hopefully barring any more surprises.) Number 4 means two things...I will be half way done and that is the end of the AC phase of the treatment.
Though this was an expected setback, just like the old Yiddish folktales things could have been worse. I could have been alone, fallen and hit my head, blah blah blah.
So I'm here, OK, determined to get though this and on with my life. I'm sustained by my little grandsons. Elijah just starting eating solids. Saul sent me a picture of him chowing down on carrots. They were everywhere...in his hair, in his feet, all over his face. I said he needs a HAZMAT suit. Little Yeshaya grows by the minute and has pinchable cheeks. He can't stop smiling and laughing.
From what I have heard, the last four treatments are different and somewhat easier. I can only hope and pray.
Go Giants.
Monday, October 13, 2014
My Writing Life and Getting Ready for Number 3
Some of my blog followers have asked about how I started writing. When I "retired" in 2009, I knew I wanted to do something different. I had already put in years of volunteer leadership in the Jewish world and though I immediately found some new volunteer gigs (teaching English as a second language to Chinese Seniors, and volunteering as a tutor in an Oakland grade school) I needed to find something else that would be meaningful and stimulating.
I thought I might like to try creative writing and searched on the internet for classes. By chance I found a writing workshop which met on Thursday mornings near Lake Merritt, Lakeshore Writers They had an opening and I signed up. I was nervous.
What was I even thinking that me, a 59 year old, could start creative writing at my age. Though I had written endless term papers as a history major, I had done almost no creative writing. However I had a vivid imagination. As a child, my sister and I put on elaborate plays for our parents on Saturday afternoons. I was the ringleader of great backyard adventures; playing pirates, stagecoach and whatever else I could cook up.
At the first session, the facilitator, Teresa Burns, explained that during the two and half hour class, we would write three times using the Amherst method. This meant we would write to prompts then read what we we had written and the participants would discuss the positive aspects of what they liked in the writing. There were eight of us and I was the oldest. I remember the first prompt... we were supposed to write about hair. At first I panicked, then I settled in. I could write a piece based on my daughter Elana's mane of wild hair which had a life of its own.
I was hooked.from the first class. I knew this was what I meant to do. I loved the workshop and repeated it many times. My fellow writers, some of whom I wrote with repeatedly, were amazing, and I still remember their writing voices. I learned that every writer has a distinct voice layered with personal experience and their history that infuses their fictional writing.
I have taken other writing classes in San Francisco and Berkeley through OLLI, Osher Lifelong Learning in memoir, poetry and screenwriting.
I began writing intensively in my free time and discovered the world of writing contests and on-line publishing and started sending my short stories, poetry and non-fiction all over. I have had a number of pieces published and to be sure have received my share of rejection notices as well. I have had to learn to just get over the rejections and keep at it.
What I have realized is that since becoming a "writer", and you should know it is not easy to call myself a writer, is that I have developed a sixth sense. I have become an observer of people and mannerisms. I tune in to random conversations at the market or on a BART train.
I often go back in my memory and conjure up the images of my childhood ... our beloved neighbor handing me poppies over our splintery fence,.my mother's old O'Keefe and Merritt stove in our sunny kitchen, the beauty of the magenta rhododendrons at Golden Gate Park, lazy summer afternoons in Calistoga. These kaleidoscope images pop up in my stories and poetry.
Ironically my current health situation will give me much to write about. I have already sent away two new poems to a literary magazine.
OK...so I've been stalling. My number 3 chemo is coming up this Tuesday. The only thing I know for sure is that receiving chemo is like being on a runaway roller coaster with constant ups and downs . Because my resistance is lower, I am very susceptible to little viruses and this round I had a slight cold and a mild stomach thing. Because I'm constantly thirsty, our Indian summer hot weather was not pleasant. Basically I figured out that chemo leaves one delicate and vulnerable.
When I have a good day, as I have said in previous blogs, I am truly grateful. What a lesson I am learning... to treasure life day by and good health. My two local grandsons, Elijah and Shaya are still my biggest cheerleaders and no matter how crappy I feel they make me feel better.
Thanks to all of you for sticking with me as I navigate this bumpy road. I treasure your cards, emails and messages.
I thought I might like to try creative writing and searched on the internet for classes. By chance I found a writing workshop which met on Thursday mornings near Lake Merritt, Lakeshore Writers They had an opening and I signed up. I was nervous.
What was I even thinking that me, a 59 year old, could start creative writing at my age. Though I had written endless term papers as a history major, I had done almost no creative writing. However I had a vivid imagination. As a child, my sister and I put on elaborate plays for our parents on Saturday afternoons. I was the ringleader of great backyard adventures; playing pirates, stagecoach and whatever else I could cook up.
At the first session, the facilitator, Teresa Burns, explained that during the two and half hour class, we would write three times using the Amherst method. This meant we would write to prompts then read what we we had written and the participants would discuss the positive aspects of what they liked in the writing. There were eight of us and I was the oldest. I remember the first prompt... we were supposed to write about hair. At first I panicked, then I settled in. I could write a piece based on my daughter Elana's mane of wild hair which had a life of its own.
I was hooked.from the first class. I knew this was what I meant to do. I loved the workshop and repeated it many times. My fellow writers, some of whom I wrote with repeatedly, were amazing, and I still remember their writing voices. I learned that every writer has a distinct voice layered with personal experience and their history that infuses their fictional writing.
I have taken other writing classes in San Francisco and Berkeley through OLLI, Osher Lifelong Learning in memoir, poetry and screenwriting.
I began writing intensively in my free time and discovered the world of writing contests and on-line publishing and started sending my short stories, poetry and non-fiction all over. I have had a number of pieces published and to be sure have received my share of rejection notices as well. I have had to learn to just get over the rejections and keep at it.
What I have realized is that since becoming a "writer", and you should know it is not easy to call myself a writer, is that I have developed a sixth sense. I have become an observer of people and mannerisms. I tune in to random conversations at the market or on a BART train.
I often go back in my memory and conjure up the images of my childhood ... our beloved neighbor handing me poppies over our splintery fence,.my mother's old O'Keefe and Merritt stove in our sunny kitchen, the beauty of the magenta rhododendrons at Golden Gate Park, lazy summer afternoons in Calistoga. These kaleidoscope images pop up in my stories and poetry.
Ironically my current health situation will give me much to write about. I have already sent away two new poems to a literary magazine.
OK...so I've been stalling. My number 3 chemo is coming up this Tuesday. The only thing I know for sure is that receiving chemo is like being on a runaway roller coaster with constant ups and downs . Because my resistance is lower, I am very susceptible to little viruses and this round I had a slight cold and a mild stomach thing. Because I'm constantly thirsty, our Indian summer hot weather was not pleasant. Basically I figured out that chemo leaves one delicate and vulnerable.
When I have a good day, as I have said in previous blogs, I am truly grateful. What a lesson I am learning... to treasure life day by and good health. My two local grandsons, Elijah and Shaya are still my biggest cheerleaders and no matter how crappy I feel they make me feel better.
Thanks to all of you for sticking with me as I navigate this bumpy road. I treasure your cards, emails and messages.
Monday, October 6, 2014
When I Grow Up
When you have cancer you do think about time, longevity and the quality
of life. Two of the most remarkable women I know are in their nineties.
I recently said to my sister's mother in law, Marian, who just turned ninety three, that I wanted to be like her when I grow up. She is an amazing woman. During her working years, she was an Egyptologist teaching at San Francisco State. She led numerous tour groups to visit the pyramids. Marian has many interests. She is an avid Giants and 49'er's fan and never misses the opera, ballet or symphony. She continues to take classes at the Fromm Institute and is about to leave for a trip to China with one of her sons. If you want to reach her, you better call really early in the morning because she might very well be out.
Every summer she hosts a full house of family and guests at the family home on idyllic private lake in Stratford, Connecticut. Jeff and I were part of the gang there one summer.
What I most admire about her is her spirit and attitude. Having lost her dear son, Peter, my sister's husband, this year from a difficult illness, she doesn't wallow or feel sorry for herself. The other day she said to me, "you have to look forward, not back." Over the years we have enjoyed many wonderful meals and family celebrations in her Twin Peaks home taking in breathtaking views of San Francisco. "Mimi" as she is known to her flock of grandchildren and great grandchildren is one of my role models.
Another nonagenarian whom I admire is in many ways is completely different from Marian,. She is my mother's cousin Trude who turned ninety this past August. She is a force of nature though she is barely five feet tall. Trude is the one remaining cousin of my mother's family, the last link to my mom in many ways.
Trude has an amazing spirit like Marian. Her nickname is "Butterfly" and she lives up to the name flitting about, spreading her little bits of family news as she stays in touch and shares her affection with her extended family. She loves hearing about my grandchildren and adores when the Israeli crew came to visit her in San Francisco.
Trude was born in Fronhausen, a small town in Central Germany, near my mother's home town. Her story of survival in brutal ghettos and concentration camps as a young girl, later being reunited with her beloved sister Jenni is a book of its own. Her dear mother and two older brothers did not survive.
Trude and her family were beloved in their small town and known for their generosity. On a trip to Germany, I visited my mother's picturesque village and Trude's home, spending time with people who remembered her family and heard the stories firsthand.
In the last twenty years, several determined young Germans, not even alive during the war, have dedicated themselves to establishing an organization to insure that the Jews of this region are not forgotten. Trude is like a celebrity to them. She receives many phone calls, visits,letters and emails. The group they have established have re-dedicated a synagogue that was destroyed and maintain the Jewish cemetery. They commemorate Krystalnacht. They give lectures and hold symposiums. Trude is their beloved poster girl..Sometimes it is too much for her to keep up her relationship with the group because painful memories get rekindled.
So...now about me. Chemo #2 was somewhat easier than #1. Jeff keeps telling me I did much better. I want to believe him and I think he is right.Every day brings new challenges but I know I can get through this.
And I did get my hair buzzed. Yeah, I'm over it already. I shed a few tears but I'm done with that. I now alternate between two wigs and a lot of head coverings
My biggest complaint right now is some days I feel draggy, but when I feel good I try to do things.
I continue to receive surprises, emails and cards. I had a lovely collection of goodies left at my door by an old friend and a whole box of treats which arrived by Priority Mail. Sometimes I feel spoiled by the love and good wishes.
My former Thursday morning writing group just found out about my situation and have sent me some wonderful and encouraging messages.
Thank you again to family and friends for helping me get through these days. And thank you to Marian and Trude for being my inspiration of how you can live to a good long age and be vital and alive. When I grow up I want to be like you.
I recently said to my sister's mother in law, Marian, who just turned ninety three, that I wanted to be like her when I grow up. She is an amazing woman. During her working years, she was an Egyptologist teaching at San Francisco State. She led numerous tour groups to visit the pyramids. Marian has many interests. She is an avid Giants and 49'er's fan and never misses the opera, ballet or symphony. She continues to take classes at the Fromm Institute and is about to leave for a trip to China with one of her sons. If you want to reach her, you better call really early in the morning because she might very well be out.
Every summer she hosts a full house of family and guests at the family home on idyllic private lake in Stratford, Connecticut. Jeff and I were part of the gang there one summer.
What I most admire about her is her spirit and attitude. Having lost her dear son, Peter, my sister's husband, this year from a difficult illness, she doesn't wallow or feel sorry for herself. The other day she said to me, "you have to look forward, not back." Over the years we have enjoyed many wonderful meals and family celebrations in her Twin Peaks home taking in breathtaking views of San Francisco. "Mimi" as she is known to her flock of grandchildren and great grandchildren is one of my role models.
Another nonagenarian whom I admire is in many ways is completely different from Marian,. She is my mother's cousin Trude who turned ninety this past August. She is a force of nature though she is barely five feet tall. Trude is the one remaining cousin of my mother's family, the last link to my mom in many ways.
Trude has an amazing spirit like Marian. Her nickname is "Butterfly" and she lives up to the name flitting about, spreading her little bits of family news as she stays in touch and shares her affection with her extended family. She loves hearing about my grandchildren and adores when the Israeli crew came to visit her in San Francisco.
Trude was born in Fronhausen, a small town in Central Germany, near my mother's home town. Her story of survival in brutal ghettos and concentration camps as a young girl, later being reunited with her beloved sister Jenni is a book of its own. Her dear mother and two older brothers did not survive.
Trude and her family were beloved in their small town and known for their generosity. On a trip to Germany, I visited my mother's picturesque village and Trude's home, spending time with people who remembered her family and heard the stories firsthand.
In the last twenty years, several determined young Germans, not even alive during the war, have dedicated themselves to establishing an organization to insure that the Jews of this region are not forgotten. Trude is like a celebrity to them. She receives many phone calls, visits,letters and emails. The group they have established have re-dedicated a synagogue that was destroyed and maintain the Jewish cemetery. They commemorate Krystalnacht. They give lectures and hold symposiums. Trude is their beloved poster girl..Sometimes it is too much for her to keep up her relationship with the group because painful memories get rekindled.
So...now about me. Chemo #2 was somewhat easier than #1. Jeff keeps telling me I did much better. I want to believe him and I think he is right.Every day brings new challenges but I know I can get through this.
And I did get my hair buzzed. Yeah, I'm over it already. I shed a few tears but I'm done with that. I now alternate between two wigs and a lot of head coverings
My biggest complaint right now is some days I feel draggy, but when I feel good I try to do things.
I continue to receive surprises, emails and cards. I had a lovely collection of goodies left at my door by an old friend and a whole box of treats which arrived by Priority Mail. Sometimes I feel spoiled by the love and good wishes.
My former Thursday morning writing group just found out about my situation and have sent me some wonderful and encouraging messages.
Thank you again to family and friends for helping me get through these days. And thank you to Marian and Trude for being my inspiration of how you can live to a good long age and be vital and alive. When I grow up I want to be like you.
Sunday, September 28, 2014
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.
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.
Tuesday, September 23, 2014
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!
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!
Friday, September 12, 2014
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.
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.
Saturday, September 6, 2014
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.
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.
Wednesday, September 3, 2014
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.
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.
Tuesday, September 2, 2014
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.
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.
Subscribe to:
Posts (Atom)