It is a great feeling to be done with chemo. Every chemo appointment was a source of anxiety and dread but now that is all behind me. We also never knew the side effects and as you know I experienced many. Jeff laughs and tells me how much better my coloring is...no more Casper the ghost.
Yesterday on a beautiful cold morning with the moon still hovering, Jeff and I trekked to San Francisco to have my port removed.We left at 6:30am because the traffic to SF on our recent early morning drives has been awful, and we have been late. Yesterday traffic was post-holiday light and we got there for once before the appointment. Jeff stayed in the lobby while I went up to the interventional radiation department where they installed the port so they could remove it. Having a port has been a godsend. It saved me from so many extra sticks and pokes.
The port resided in my upper left chest area and was hardly noticeable.It has been used for the last five months both to draw blood which has happened frequently as well as for the administration of the chemotherapy. I was lucky with my port as I never had a problem with it such as an infection.
When it was inserted it was more of a delicate procedure but this time they told me it would be quick, and I would not need to fast or have anything more than local anesthesia. Despite what they told me, every time I have any procedure I get nervous. I suppose this is normal. I was greeted by a friendly nurse who showed me where to change and promptly gave me some warm blankets while I waited on a gurney. The halls were cool and I was glad to have them.She congratulated me for getting the port out.
While I waited for the surgeon to come to talk to me, I reflected on my "detour." Sometimes it is overwhelming to think of the unexpected twists and turns I have endured and how far I have come since my cancer diagnosis. Yet now that I can see the proverbial light at the end of the tunnel, I am very grateful. My five week course of radiation will begin in mid February.
I saw a woman the other day in Berkeley struggling to get out of her van in to a wheelchair then pushing herself forward with crutches. Watching her reminded me that my situation (g-d willing) is temporary and I will be able to move forward and get on with my life. Her situation is permanent.
The young Asian surgeon came in and told me this would be a quick procedure, probably 45 minutes. He likened it to a dental procedure...(great, I hate going to the dentist.) He would give me a local anesthetic then remove the port. I signed a release and then the nurse came and we walked to the operating room. A technician cleaned the area and the surgeon came in. I chatted with him as I was completely alert and awake. The shot hurt for a second but the procedure was simple. I felt some pressure and pulling but that was it. He removed the port and showed it to me. It looked like a small round microphone with a chord. Then he spent ten minutes stitching me up and I was good to go. It went quicker than he anticipated, only a half hour.
Though I thought I would get back to my gym this week, now I have to wait another week. I am looking forward to resuming my old activities. Next week I start my beloved Thursday morning writing workshop. I hope to resume Zumba and regular gym visits.
It will take time as I gain strength and my resistance gets back to normal, and I am trying hard to stay away from anyone with a cold. At the end of the month we are booked for Maui and we can't wait. Aloha! Mahalo!!
Wednesday, January 7, 2015
Tuesday, December 23, 2014
My Anthem Insurance saga
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.
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.
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.
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