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.
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