For me the title applies to my current medical condition.
I have been battling with achy muscle, sometimes very significant, interfering with sleep and certainly with quality of life. I had thought it was due to my cholesterol medication because the strength of that medication had been changed recently. I had spent some time stopping and starting that medication to see if it made any difference with my symptoms and it did seem to me to help. My blood tests that might show the muscle damage that can occur with cholesterol medication were normal. Since I have recently been treated and cured from giant cell arteritis, a blood vessel inflammatory condition tht requires high dose prednisone to supress, I have a risk of a complication of that disease called polymyalgia rheumatica. This is a small vessel inflammation that involves the muscles of the proximal extremities that cause achiness and fatigue. But we had thought of this and the blood test that would help confirm this had remained normal. All through our trip to Eastern Europe I was very achy, and had difficulty sometimes getting around the castles and ruins that we explored on this trip. It made this trip very difficult for me and fraught with suffering. We arrived back in town on May 27 and I went through with my preop testing and exam as planned. My internist suggested I contact my rheumatologist about these aches. Id did and even over the phone he agreed that I did have polymyalgia rheumatica -- the complication I referred to above. He told me it occurs 60% of the time when patients are coming off prednisone for treatment of giant cell arteritis. He suggested I go back on prednisone but in low dose. In two days of 10 mgm per day my symptoms are about 70 % better, though not gone. So again my blood sugars are out of control due to even the low dose prednisone. I am told none of this should have any negative affect on my melanoma surgery planned for June 2 so that will proceed next week on June 2.
Even though I myself was (am) a physician, I never liked going to see a physician as a patient myself. I always went when I had to, but strangely enough I got nervous, my blood pressure would go up (so called white coat hypertension), and I experienced some dread about the visit ahead of time. As I have gotten older, I have had to go to the doctor more frequently to check my diabetes, my cholesterol, my blood pressure and then of course the giant cell arteritis, so I have become some desensitized to these visits and my blood pressure no longer goes up. But lately I am getting an idea that life is being unfair to me. There should be a rule that says any individual patient only needs to be struck with one life threatening illness at a time. Alas, there is no such rule. So I just plod along and do what I have to do to treat each individual condition but it ain't easy. As a physician, sometimes I have felt great compassion toward patients who are going through cancer treatment just because of all the tests, and treatments, repeat status checks etc -- constant visits and procedures. I wondered how these people keep going through all these machinations of their bodies. When an obituary says: "After a battle with cancer, so and so died of the disease..." I truly realized that indeed that person was in a battle, maybe more of a war with repeated battles won and lost against the cancer. I can see under some circumstances where the patient would just get tired of this battle and decide not to proceed with the next recommended treatment or testing procedure. Of course, I am not at that point; I will do what needs to be done. But the classical question: "Why Me?" and this feeling of unfairness, and "Enough is enough." are upper most in my mind right now. Again stay tuned.
Sunday, May 30, 2010
Wednesday, May 26, 2010
Our Travels + Melanoma
After the last post, anyone accessing this site might be wondering what is going on. Well, we decided with the support of my surgeon, and my oncologist partner, my son the surgeon, and another surgeon partner of mine, that we would go ahead with the planned trip. Everyone agreed that it would not make any difference to postpone the definitive surgical removal and the sentinel node biopsy for 4 weeks so we could take this trip. I have spent some time off and on checking the lesion that still remains on my right upper arm. It will be nice to get it off though the trip of course has kept me occupied to block most of these thoughts.
Here's our trip itinerary. You may read here and there in my future postings about some of these sites: Prague, Czech Republic in off and on rain showers; Budapest in a gorgeous sunny day with this time a visit to the interior of the Great Synogogue, the second largest in Europe; a cruise with Avalon down the Danube from Budapest to the Black Seas past the Iron Gates of the Danube, and a high light visit to Veliko Tornovo, a lovely medieval town in Serbia; then Bucharest, Romania; a tour of northern Romania including the Bran Castle of Vlad the Impaler fame, the stimulus for Dracula; finally a tour through Moldova to seek out the villages of Amos parents' birth and other important sites for the family history. We have been traveling since May 3 and return home tomorrow.
We are staying tonight at an interesting litte hotel at Schiphol Airport in Amsterdam, Netherlands. We didn't want to pay the $300 a night to stay at the Airport Sheraton. At this point in our trip as we are travel weary and wending our way home, we didn't want to go into Amsterdam. We have seen it quite well on past trips. This little hotel is called CitizenM; the M stands for Mobile. It is certainly meant to house the mobile citizen. The rooms are almost like a small river cruiser stateroom. A king sized bed stretches from wall to wall and up to the window which overlooks the tarmack of Schiphol with its KLM planes coming and going, yet you do not hear the planes. The shower is open in the room as is the toilet with circular clouded glass enclosures that can be closed for some degree of privacy. The luggage is intended to be put in a drawer under the bed but ours was too big and too heavy to do that, so we stacked them by the door making it a little difficult to get in and out of the room. There is a remote control to alter the lighting, the background music, the temperature, and what is played on the large TV on the wall to the left over the bed. You can watch movies, TV, or play games, or you can just watch all the instructions and demo videos for the various assets of the room. The decor downstairs is very avant garde. There is a large internet cafe, and two small libraries, as well as a canteen where you can purchase any item 24 hours a day and heat it up or eat it cold. We also spent sometime exploring Schiphol while staying at this hotel. We have been through Schiphol numerous times but were always just following signs to get to another aisle of gates, or to get to the exit to get into the city. This time we explored the shopping mall and we ate a lunch at a very large Burger King. We even went up to the viewing terrace where children were going crazy at the sight of all the airplanes landing and taking off. I recalled what my two boys would have thought when they were small. They would have been excitedly screaming as well. I think I will head back up to the room and try out some of that technology.
One day and I am home. Will fast on the airplane the last meal so I can immediately go and get my fasting blood drawn for preop labs. Also will get my chest xray and EKG done in preparation for surgery on this melanoma in 6 days. Ah, it is all coming back to me now. Back to reality. So that is what happened. I committed to living my life as planned and going on this trip as long as it was not foolish to do this. Now I must start to practice my meditation and my mindfulness training to get through the next couple weeks of procedures and of waiting for the results of the sentinel node biopsy. Stay tuned!
Here's our trip itinerary. You may read here and there in my future postings about some of these sites: Prague, Czech Republic in off and on rain showers; Budapest in a gorgeous sunny day with this time a visit to the interior of the Great Synogogue, the second largest in Europe; a cruise with Avalon down the Danube from Budapest to the Black Seas past the Iron Gates of the Danube, and a high light visit to Veliko Tornovo, a lovely medieval town in Serbia; then Bucharest, Romania; a tour of northern Romania including the Bran Castle of Vlad the Impaler fame, the stimulus for Dracula; finally a tour through Moldova to seek out the villages of Amos parents' birth and other important sites for the family history. We have been traveling since May 3 and return home tomorrow.
We are staying tonight at an interesting litte hotel at Schiphol Airport in Amsterdam, Netherlands. We didn't want to pay the $300 a night to stay at the Airport Sheraton. At this point in our trip as we are travel weary and wending our way home, we didn't want to go into Amsterdam. We have seen it quite well on past trips. This little hotel is called CitizenM; the M stands for Mobile. It is certainly meant to house the mobile citizen. The rooms are almost like a small river cruiser stateroom. A king sized bed stretches from wall to wall and up to the window which overlooks the tarmack of Schiphol with its KLM planes coming and going, yet you do not hear the planes. The shower is open in the room as is the toilet with circular clouded glass enclosures that can be closed for some degree of privacy. The luggage is intended to be put in a drawer under the bed but ours was too big and too heavy to do that, so we stacked them by the door making it a little difficult to get in and out of the room. There is a remote control to alter the lighting, the background music, the temperature, and what is played on the large TV on the wall to the left over the bed. You can watch movies, TV, or play games, or you can just watch all the instructions and demo videos for the various assets of the room. The decor downstairs is very avant garde. There is a large internet cafe, and two small libraries, as well as a canteen where you can purchase any item 24 hours a day and heat it up or eat it cold. We also spent sometime exploring Schiphol while staying at this hotel. We have been through Schiphol numerous times but were always just following signs to get to another aisle of gates, or to get to the exit to get into the city. This time we explored the shopping mall and we ate a lunch at a very large Burger King. We even went up to the viewing terrace where children were going crazy at the sight of all the airplanes landing and taking off. I recalled what my two boys would have thought when they were small. They would have been excitedly screaming as well. I think I will head back up to the room and try out some of that technology.
One day and I am home. Will fast on the airplane the last meal so I can immediately go and get my fasting blood drawn for preop labs. Also will get my chest xray and EKG done in preparation for surgery on this melanoma in 6 days. Ah, it is all coming back to me now. Back to reality. So that is what happened. I committed to living my life as planned and going on this trip as long as it was not foolish to do this. Now I must start to practice my meditation and my mindfulness training to get through the next couple weeks of procedures and of waiting for the results of the sentinel node biopsy. Stay tuned!
Sunday, May 2, 2010
Where do I begin? A diagnosis of malignant melanoma!
I am engulfed, embroiled in a universal experience and want to write about some of the events and the overwhelming feelings that become involved.
Ten days ago I went to a dermatologist about a lesion on my arm. It had been there a long time and had at times been scaly, but then in the last couple months, it had developed some projections in its profile and the edges had become rolled. I knew the latter was characteristic of basal cell carcinoma of the skin which is a cancer, but a low grade one which does not usually spread elsewhere but can destroy normal tissue locally. There was no pigment in this lesion; it was a reddish pink. I knew it needed checking and probably removal. I went in and even the dermatologist was fooled. She thought also possibly a basal cell or a squamous cell carcinoma or lichen planus. She did not suspect melanoma and she did a shave biopsy. That is a no-no if you are considering melanoma because this interferes with the calculation of a depth of the lesion, information which is important in planning how to proceed with treatment. Well, surprising all of us, on Wednesday, 3 days ago I got the call from the dermatologist that she had bad news which she apologized for but I had a malignant amelanotic (without melanin pigment) melanoma. So now it is Wednesday night and we are due to depart on a 3 1/2 week trip on Monday -- 5 days later. The path report says the biopsy specimen had cancer clear down to the base of the biopsy and to the edge of the lesion in several places. So I still had the cancer on my arm. The dermatologist had told me that a new portion of the pathological report rates the mitotic rate of the tumor ie the number of cell divisions per mm squared. If less than 1 it is a lower risk lesion; if greater than 1 it is a higher risk lesion and very new changes to the classification of melanoma takes that into consideration also in determining who might need a further diagnostic test ie the sentinel node biopsy. My mitotic rate was greater than 1. So now I have an inadequately removed cancer still on my arm which has some high risk characteristics. Now what? A list of questions began to run through my head and my husbands. Should we cancel our trip that had been planned for 8 months? Is it safe to travel with this cancer still on my arm and to further delay definitive treatment. Should I push for a sentinel node dissection? Should we do something to try to establish the depth of the lesion by a small re biopsy or should I have the wide excision of the lesion done before we go on the trip. Which doctor should I see?
I began calling everyone I could find to try to begin to answer these questions. Two of the surgeons that I have worked closely with as a colleague over the years were out of town at conferences. Another third surgeon who is a close friend was not available by phone. My own internist is out on medical leave. I tried to get ahold of a plastic surgeon in town who trained with my surgeon son to see what he could tell me. He was supposed to call me back. And I was trying to get ahold of my son of course but they were not answering their phones because they were busy putting the kids to bed at this time of night. Finally when I couldn't get ahold of anyone I called the clinic to find out which surgeon was on call. It was Dr. Brooks. He was very thoughtful and when I explained the situation with the inadequate biopsy and our upcoming trip, the first thing he said was; "Well, I can see you tomorrow and we can talk about the pathology and we can try to redo the biopsy to try to get a Breslow depth with the second try. I can give you a suture removal kit and you can take the stitches out yourself on your trip." At this point it sounded like a plan. But he did not know about the mitotic rate being used as an indication for a sentinel node biopsy, a fact that the dermatologist had said was entirely new. He said there was always vascilation back and forth, whether Breslow 0.75 or 1 mm should be the cutoff and it always just comes back to the 1 mm as the cut off. If your depth is 1 mm or more you need the further surgery so we would try to reestablish the Breslow depth with a further excision or punch biopsy at the site. That was the plan.
But by the next morning I had heard from Don, from Dr. Pele*, the oncologist I had seen in the past for a polyclonal gammopathy which is a benign condition, and most importantly from Dr. Whit* and his partner at his plastic surgery office who does only melanoma surgery. Dr. D was very nice and after I explained the situation to his nurse, she got a message to him and he called me back directly. He said we would never restablish a Breslow level and this unknown in and of itself was an indication for a sentinel node biopsy. Now I felt like I had a plan and some options. I went to see Dr. Brooks in the afternoon, but after some discussion we decided not to do any further excision of the biopsy. I had sort of decided to go with the surgery. He had researched the situation and now realized that the mitotic rate is now used in the risk assessment as of new guidelines about 2 months old and therefore I probably should have the sentinel node biopsy.
But jDr. Brooks had found another issue. He even as a surgeon had heard a new heart murmur that I didn't know I had. Where did that come from? I wasn't really worried about it but the surgeon and my internist would probably want an echocardiogram done before the surgery. And now my husband was throwing a fit and maintaining that he was not going to take a wife with a new heart condition to Europe with him. He was almost yelling at my cardiologist friend I was talking with to do the stress echo immediately. How was I going to get that test done within the next day when my internist was out on medical leave and as I learned through another phone call the echo technician at the clinic was out on Friday due to her own minor surgical procedure. So I began throwing my MD after my name around again, calling other clinics and hospitals in the area. I finally found a 10:15 appointment at CSM Ozaukee Hospital. But now I needed an order. So I called my old roommate from when I was working who is on the staff at that hospital and he called in the order. So now I was off to get the echo. I had spoken with my friend and cardiologist who wanted to do a stress echo since I should have the stress part because I am diabetic, but he strongly maintained that this could all wait until I had returned and even til after all the surgical management of the melanoma. But I knew my internist and my surgeon would need the echo so I still worked to get it.
My cardiologist friend read the results and called me in the afternoon with the non-serious results. "No one every listens to me," he whined. "I wanted to do the stress echo so we would have both the echocardiogram results and a stress at the same time."
" I know," I said, "but you would have had to write up a consult saying I could wait for the echo and you haven't even seen me in person. My hands were tied so I got the echo. But you're wrong, I did listen to you." My diagnosis was tricuspid valve regurgitation and a slight elevation of the pressure on the right side of heheart. Nothing needs to be done about this, though I don't know why this has developed now. Anyway the echo is done and checked off my list.
I slept on and off those two nights, actually getting maybe 6 hours each night but the first thing you think about when you wake up is this diagnosis and what it might mean. I vascillated between complete confidence and optomism and panic and assumption of the worst. This must be almost universal feelings in everyone who has received this diagnosis. My husband says he went through the same thing when he got his diagnosis of prostate cancer. He is telling me that these obsessions finally subside though they never completely go away. I did have times when I was feeling more spiritual than usual, trying to live each moment and feeling a great gratitude for this gift of life and vowing to myself to maintain that gratitude at this high level.
On Friday, two days after receiving the diagnosis, I saw Dr D, the melanoma plastic surgeon. He was very nice and was very complete with me. He certainly had little pieces of information that no one else had given me. He told me that he was going to proceed as though I didn't have any medical knowledge so he used his audiovisual chart to explain the pathology. Indeed I didn't know that my cancer was a Level IV tumor, having extended beneath the basement membrane and he said that in and of itself was an indication for a sentinel node. I was surprised about the smaller size of his planned incisions and yet he was going to more widely excise the lesion than Dr. Brooksarad planned. He does the axillary node resection through a 1 inch incision. I changed my mind. I decided to go with him. He does this type of surgery all the time. He has a surgical suite for giving the radioactive injection and for the patient to wait for this magic stuff to do its job to identify the sentinel or "gateway" node that is removed to look for the cancer. He quoted studies to me and one of them was that the prognosis was no different for those patients like myself whose tumor had been cut through by a shave biopsy or other type of inadequate biopsy. That was good news to hear. So I left there with my surgery scheduled for June 2nd when we get back. When I got home I called the nurse for my internist who was working in the WIC even though my internist was not there. She said they had put me in for a preop exam on Friday May 28 at 11 am and the receptionist had been supposed to let me know this. So that was set up. I would get the chest xray and EKG either Thursday when we returned or Friday morning as well as the fasting blood work. I think I was finally scheduled up with everything.
I had to let Dr. Brooks know that I was going with plastic surgeons for this operation. I felt bad that he had been so helpful but now I was not going to have him do the surgery but he had said that he wouldn't be hurt if I went with someone else. But I still worried that he would. I left a message with his nurse about my decision and told her I wanted to speak with him anyway and to thank him. But he didn't call back. Probably to be expected. What surgeon in his right mind would want to call back the old woman/colleague who had just thrown him over for another surgeon. I spoke with my son that night and told him of my decision. He chastised me and said Dr. Brooks had every right to be pissed; that I was engaged in blatant doctor shopping. I guess I was, but people do get second opinions and they sometimes go with the second opinion. If you get a second opinion and you then decide that's the way you want to go, you go with that option and that doctor. right? Well, I am still feeling bad about that. I should have handled that better and told Dr. Brooks that I was going to see a plastic surgeon and there was a possibility that that is where I would go. When he didn't call me back I sent him a long email and told him why I was switching and thanked him for all he had done for me. I hope that helps. I want to make amends and I want to apologize if I caused any negative feelings in him. What else can I do? I think the need to get something done fast in this case because of the trip has led to me moving much faster and impulsively than I usually would.
So we are going on the European trip with the remains of this lesion still on my arm. I have my pre op and tests, and the wide excision and sentinel node biopsy scheduled with the plastic surgeon at the medical school. I hope I can enjoy the trip. My husband said he was able to do so when we went to Peru with prostate cancer riding in his mind and the need for radiation treatment right away when we returned. I think I will be able to enjoy the trip. Actually given that adverse events in life often increase the appreciation for positive moments in life may help me maintain this positive mindfulness and appreciation, gratitude for every moment.
I had said half jokingly that "life sucks, then you die" but I don't really believe that. Life is good and every moment of it that we have is a beautiful gift. I can truly say that I believe that even in the face of this adversity.
Ten days ago I went to a dermatologist about a lesion on my arm. It had been there a long time and had at times been scaly, but then in the last couple months, it had developed some projections in its profile and the edges had become rolled. I knew the latter was characteristic of basal cell carcinoma of the skin which is a cancer, but a low grade one which does not usually spread elsewhere but can destroy normal tissue locally. There was no pigment in this lesion; it was a reddish pink. I knew it needed checking and probably removal. I went in and even the dermatologist was fooled. She thought also possibly a basal cell or a squamous cell carcinoma or lichen planus. She did not suspect melanoma and she did a shave biopsy. That is a no-no if you are considering melanoma because this interferes with the calculation of a depth of the lesion, information which is important in planning how to proceed with treatment. Well, surprising all of us, on Wednesday, 3 days ago I got the call from the dermatologist that she had bad news which she apologized for but I had a malignant amelanotic (without melanin pigment) melanoma. So now it is Wednesday night and we are due to depart on a 3 1/2 week trip on Monday -- 5 days later. The path report says the biopsy specimen had cancer clear down to the base of the biopsy and to the edge of the lesion in several places. So I still had the cancer on my arm. The dermatologist had told me that a new portion of the pathological report rates the mitotic rate of the tumor ie the number of cell divisions per mm squared. If less than 1 it is a lower risk lesion; if greater than 1 it is a higher risk lesion and very new changes to the classification of melanoma takes that into consideration also in determining who might need a further diagnostic test ie the sentinel node biopsy. My mitotic rate was greater than 1. So now I have an inadequately removed cancer still on my arm which has some high risk characteristics. Now what? A list of questions began to run through my head and my husbands. Should we cancel our trip that had been planned for 8 months? Is it safe to travel with this cancer still on my arm and to further delay definitive treatment. Should I push for a sentinel node dissection? Should we do something to try to establish the depth of the lesion by a small re biopsy or should I have the wide excision of the lesion done before we go on the trip. Which doctor should I see?
I began calling everyone I could find to try to begin to answer these questions. Two of the surgeons that I have worked closely with as a colleague over the years were out of town at conferences. Another third surgeon who is a close friend was not available by phone. My own internist is out on medical leave. I tried to get ahold of a plastic surgeon in town who trained with my surgeon son to see what he could tell me. He was supposed to call me back. And I was trying to get ahold of my son of course but they were not answering their phones because they were busy putting the kids to bed at this time of night. Finally when I couldn't get ahold of anyone I called the clinic to find out which surgeon was on call. It was Dr. Brooks. He was very thoughtful and when I explained the situation with the inadequate biopsy and our upcoming trip, the first thing he said was; "Well, I can see you tomorrow and we can talk about the pathology and we can try to redo the biopsy to try to get a Breslow depth with the second try. I can give you a suture removal kit and you can take the stitches out yourself on your trip." At this point it sounded like a plan. But he did not know about the mitotic rate being used as an indication for a sentinel node biopsy, a fact that the dermatologist had said was entirely new. He said there was always vascilation back and forth, whether Breslow 0.75 or 1 mm should be the cutoff and it always just comes back to the 1 mm as the cut off. If your depth is 1 mm or more you need the further surgery so we would try to reestablish the Breslow depth with a further excision or punch biopsy at the site. That was the plan.
But by the next morning I had heard from Don, from Dr. Pele*, the oncologist I had seen in the past for a polyclonal gammopathy which is a benign condition, and most importantly from Dr. Whit* and his partner at his plastic surgery office who does only melanoma surgery. Dr. D was very nice and after I explained the situation to his nurse, she got a message to him and he called me back directly. He said we would never restablish a Breslow level and this unknown in and of itself was an indication for a sentinel node biopsy. Now I felt like I had a plan and some options. I went to see Dr. Brooks in the afternoon, but after some discussion we decided not to do any further excision of the biopsy. I had sort of decided to go with the surgery. He had researched the situation and now realized that the mitotic rate is now used in the risk assessment as of new guidelines about 2 months old and therefore I probably should have the sentinel node biopsy.
But jDr. Brooks had found another issue. He even as a surgeon had heard a new heart murmur that I didn't know I had. Where did that come from? I wasn't really worried about it but the surgeon and my internist would probably want an echocardiogram done before the surgery. And now my husband was throwing a fit and maintaining that he was not going to take a wife with a new heart condition to Europe with him. He was almost yelling at my cardiologist friend I was talking with to do the stress echo immediately. How was I going to get that test done within the next day when my internist was out on medical leave and as I learned through another phone call the echo technician at the clinic was out on Friday due to her own minor surgical procedure. So I began throwing my MD after my name around again, calling other clinics and hospitals in the area. I finally found a 10:15 appointment at CSM Ozaukee Hospital. But now I needed an order. So I called my old roommate from when I was working who is on the staff at that hospital and he called in the order. So now I was off to get the echo. I had spoken with my friend and cardiologist who wanted to do a stress echo since I should have the stress part because I am diabetic, but he strongly maintained that this could all wait until I had returned and even til after all the surgical management of the melanoma. But I knew my internist and my surgeon would need the echo so I still worked to get it.
My cardiologist friend read the results and called me in the afternoon with the non-serious results. "No one every listens to me," he whined. "I wanted to do the stress echo so we would have both the echocardiogram results and a stress at the same time."
" I know," I said, "but you would have had to write up a consult saying I could wait for the echo and you haven't even seen me in person. My hands were tied so I got the echo. But you're wrong, I did listen to you." My diagnosis was tricuspid valve regurgitation and a slight elevation of the pressure on the right side of heheart. Nothing needs to be done about this, though I don't know why this has developed now. Anyway the echo is done and checked off my list.
I slept on and off those two nights, actually getting maybe 6 hours each night but the first thing you think about when you wake up is this diagnosis and what it might mean. I vascillated between complete confidence and optomism and panic and assumption of the worst. This must be almost universal feelings in everyone who has received this diagnosis. My husband says he went through the same thing when he got his diagnosis of prostate cancer. He is telling me that these obsessions finally subside though they never completely go away. I did have times when I was feeling more spiritual than usual, trying to live each moment and feeling a great gratitude for this gift of life and vowing to myself to maintain that gratitude at this high level.
On Friday, two days after receiving the diagnosis, I saw Dr D, the melanoma plastic surgeon. He was very nice and was very complete with me. He certainly had little pieces of information that no one else had given me. He told me that he was going to proceed as though I didn't have any medical knowledge so he used his audiovisual chart to explain the pathology. Indeed I didn't know that my cancer was a Level IV tumor, having extended beneath the basement membrane and he said that in and of itself was an indication for a sentinel node. I was surprised about the smaller size of his planned incisions and yet he was going to more widely excise the lesion than Dr. Brooksarad planned. He does the axillary node resection through a 1 inch incision. I changed my mind. I decided to go with him. He does this type of surgery all the time. He has a surgical suite for giving the radioactive injection and for the patient to wait for this magic stuff to do its job to identify the sentinel or "gateway" node that is removed to look for the cancer. He quoted studies to me and one of them was that the prognosis was no different for those patients like myself whose tumor had been cut through by a shave biopsy or other type of inadequate biopsy. That was good news to hear. So I left there with my surgery scheduled for June 2nd when we get back. When I got home I called the nurse for my internist who was working in the WIC even though my internist was not there. She said they had put me in for a preop exam on Friday May 28 at 11 am and the receptionist had been supposed to let me know this. So that was set up. I would get the chest xray and EKG either Thursday when we returned or Friday morning as well as the fasting blood work. I think I was finally scheduled up with everything.
I had to let Dr. Brooks know that I was going with plastic surgeons for this operation. I felt bad that he had been so helpful but now I was not going to have him do the surgery but he had said that he wouldn't be hurt if I went with someone else. But I still worried that he would. I left a message with his nurse about my decision and told her I wanted to speak with him anyway and to thank him. But he didn't call back. Probably to be expected. What surgeon in his right mind would want to call back the old woman/colleague who had just thrown him over for another surgeon. I spoke with my son that night and told him of my decision. He chastised me and said Dr. Brooks had every right to be pissed; that I was engaged in blatant doctor shopping. I guess I was, but people do get second opinions and they sometimes go with the second opinion. If you get a second opinion and you then decide that's the way you want to go, you go with that option and that doctor. right? Well, I am still feeling bad about that. I should have handled that better and told Dr. Brooks that I was going to see a plastic surgeon and there was a possibility that that is where I would go. When he didn't call me back I sent him a long email and told him why I was switching and thanked him for all he had done for me. I hope that helps. I want to make amends and I want to apologize if I caused any negative feelings in him. What else can I do? I think the need to get something done fast in this case because of the trip has led to me moving much faster and impulsively than I usually would.
So we are going on the European trip with the remains of this lesion still on my arm. I have my pre op and tests, and the wide excision and sentinel node biopsy scheduled with the plastic surgeon at the medical school. I hope I can enjoy the trip. My husband said he was able to do so when we went to Peru with prostate cancer riding in his mind and the need for radiation treatment right away when we returned. I think I will be able to enjoy the trip. Actually given that adverse events in life often increase the appreciation for positive moments in life may help me maintain this positive mindfulness and appreciation, gratitude for every moment.
I had said half jokingly that "life sucks, then you die" but I don't really believe that. Life is good and every moment of it that we have is a beautiful gift. I can truly say that I believe that even in the face of this adversity.
Saturday, April 24, 2010
Sunrise from My Lady's Bedroom
My writing: 4/19/1998
The bright red ball appears slowly over the watery horizon - the sun playing a sly game with the small linear clouds. The clouds though small were brave - thick enough to stand in front of that crimson orb and block its light for only their small perimeter. Inexorably, the sun climbs into the sky in and out of the pencil and crayon thin cloud lines. Finally it is high enough to make its rosy path on the calm lake waters - but still too morning young to blind the observing eye. A little higher, and that orb sinks behind some braver and stronger clouds -- still a round globe visible but weakened. Now its glory is reflected in a pathway always leading from me to the sun no matter where I wander on that lakeside. Now as the sun rises further behind the clouds, even that pathway dims -- its light reflected off of the tiny waves like fires burning , flashing, and flickering to guide me along that path. These signal fires can be seen all the way to the horizon, flashing and guiding, even where the lake surface is one with the sky. No one could mistake the way with such brilliant guidance.
Have you ever seen such a path? If you do see one, follow it with your mind and you will no doubt be rewarded in nature's fashion.
Another unusual sunrise occured also in 1998 from my bedroom windopw. There were lots of clouds around and then there was every so temporarily a rainbow to the south of the sun extending from one cloud to the next in a small short arch. A very interesting sunrise indeed. Like some religious picture or a fantasyt art piece.
Wednesday, April 14, 2010
Pesach: A seder for a Schikza
My husband wanted to go to a seder at Congregation Shalom this year, since they were offering it on the second night. Some friends also wanted to go so they put together a table of 8 for this event.
I couldn't help thinking about all my past seders. I recall attending a seder with Amos soon after we met. It was held in a large basement hall somewhere at the University of Wisc, Madison. The seder attendees were mostly Israelis and the seder was all conducted in Hebrew. This was my first exposure to long periods of the language and I didn't know what was going on. But my lack of understanding actually made this a memorable seder for me, because I could just sit and enjoy what was going on around me. And believe me there was a lot going on. Young children were running around and not participating very much until they were offered the prize for finding the afikomen, of course. Adults were at times getting up and going to the restroom or quietly going over to another to speak quietly about something.Sometimes an adult even went to speak with the rabbi that was running the seder. It was totally informal, but very very long. It was forever before we got a chance to eat something. But this seder made me an experienced attendee when first invited to Ghita's for a seder. Amos and I were guests at her seders for upwards of 20 years. When our sons came along they were included. After we moved to Milwaukee we drove from Milwaukee over to Madison to attend. When our oldest went to college and then medical school in Madison, he was always invited to the seder at Ghita's house. Her husband led the seder in a calm and relaxed way. He didn't always know what came next but Ghita would gently guide him. She wished the order of the seder to be proper. I recall one year when Ghita did not invite us. We were not sure why. But she then called and apologized. She said that she had made a mistake by not inviting us, but she had been concerned about me being a Gentile and marrying an Israeli, and the negative example that would produce for her own children. Israelis have always been very special to American Jews and this would have made the wrong impression on teenage children. I completely understood. One year I conducted a seder in my own home in Milwaukee, with Amos' parents and brother's family attending. I made all the correct foods. We video taped the whole thing. It was especially moving to hear Amos' quiet father chanting and singing the words to the seder. I think that my mother in law was very shocked that I did this. Another year I made gefelte fish from scratch. I bought the fish pieces and purchased a Cuisinart machine to chop the fish. I didn't know that the fish market would chop the fish for me free of charge. My whole house smelled of fish for days. I had some left over after passover and Easter was just a couple days later, so I took some of the gifelte fish home and told my family that it was fish balls. They gamely tried it and very couteously said they liked it. All of these experiences should have made me more and more comfortable at this very sanctified occasion.
Still after all these past expereiences -- experiences that I actually talked about at this one -- still I feel like an outsider. Well, why shouldn't I feel like an outsider. I am an outsider. I am a Gentile. I didn't grow up with this vast history going back to BCE with Moses. And of course the seder tells that story marvelously. Of course the Pesach meal is really a celebration of freedom that takes place at a family meal in the home for most people. As we participated in the B's seder for years in Madison. The adults feel the necessity of teaching this ancient story to their offspring and the guest in that home feels this history strongly as well. But this Pesach seder held in the synogogue already states that most of those present are also outsiders in some way. Because they are here and not having a seder in their own home on the second night. Many Jewish families have seders both nights. These people either don't have enough family members and friends to hold one both nights, or the wife doesn't want to go to all the work of doing two nights (and it is a lot, a lot of work for the wife). There were older attendees and some handicap attendees who probably physically couldn't do the seder in their own home. There were a few couples with children there. I don't know their story. But in a way, we were all outsiders this second night.
I have just read a book called The Evolution of God by Robert Wright, who is an agnostic. He says that the Moses story never even happened. There is no evidence that a people of the Book won their freedom from Egypt and escaped, wandered the desert for 40 years and then came into Canaan from the outside and brutally conquered the locals, destroying their cities. Particularly there is no evidence of multiple destroyed cities from the same time period. Instead, there is evidence that the Israelites and their worship of Yahweh arose within Canaan itself, taking steps forward and then steps backwards from worship for their one true God and back to polytheism and then forward again to worship of the one God. So here I sat at this Seder table hearing that old story told again and not sure whether even to believe it. Yet it is so the basis of this religion.
Some years ago I felt that I understood the religion of my husband's tribe as both he and I call them. I felt the feeling of history, of exact knowledge about where your ancestors come from and who they were, going all the way back to Biblical times. I felt the sanctity of the law having been delivered to this people by their God all those eons ago and still surviving today in the 21st century. This knowledge alone without all the religious doctrine provides a strong feeling of belonging and of spiritiual connection going way back. It's something like what I felt when overlooking the Old City of Jerusalem from the Mount of Olives -- human beings have been here for eons -- this glorious city has been a capitol for them for 5000 years. Similar feelings arse from wondering the ruins of Megiddo, a city that was destroyed and rebuilt at least 28 times as evidenced by the layers in the archeological digs. These humans were so resolute, so tenacious, could not be put down. Some of these feelings I envy in people of the Jewish faith. Christianity doesn't have such feelings. Indeed, Christianity has to borrow those feelings from the Old Testament, ie use the same feelings of history that the Jews use.
So here I sat at this Seder table, feeling an outsider through no fault of any of my hosts, whether close friends or other strangers in the room. I know what to do, I know the order of the seder. The word seder after all means order. I know many of the songs that are sung. I know about the 4 cups of wine and know when to raise the cups in tribute and honor. I know some of the Hebrew. And I can speak with our close friends very eruditely. I can feel warm and fuzzy and can say the correct nice thing to them. And yet, I am an outsider. In some ways I feel I am putting on an act. At some previous seders I have attended, those sitting around me didn't know I was not a Jew and because I knew so much about the ritual, I could play act. I could be a Jew for the night. I recall that feeling after the evening was over and I realized deep inside that I had playacted the whole evening. I am not a Jew and I am sitting at their table at one of their most celebrated holidays. It does put me in my place. But it also speaks to this people and their religion. No one has ever said or done anything to produce this discomfort in me. I have been accepted and treated with nothing but warmth and hospitality. That very major fact must have something to do with why the People of the Book still are a dominant force in modern society.
Still after all these past expereiences -- experiences that I actually talked about at this one -- still I feel like an outsider. Well, why shouldn't I feel like an outsider. I am an outsider. I am a Gentile. I didn't grow up with this vast history going back to BCE with Moses. And of course the seder tells that story marvelously. Of course the Pesach meal is really a celebration of freedom that takes place at a family meal in the home for most people. As we participated in the B's seder for years in Madison. The adults feel the necessity of teaching this ancient story to their offspring and the guest in that home feels this history strongly as well. But this Pesach seder held in the synogogue already states that most of those present are also outsiders in some way. Because they are here and not having a seder in their own home on the second night. Many Jewish families have seders both nights. These people either don't have enough family members and friends to hold one both nights, or the wife doesn't want to go to all the work of doing two nights (and it is a lot, a lot of work for the wife). There were older attendees and some handicap attendees who probably physically couldn't do the seder in their own home. There were a few couples with children there. I don't know their story. But in a way, we were all outsiders this second night.
Some years ago I felt that I understood the religion of my husband's tribe as both he and I call them. I felt the feeling of history, of exact knowledge about where your ancestors come from and who they were, going all the way back to Biblical times. I felt the sanctity of the law having been delivered to this people by their God all those eons ago and still surviving today in the 21st century. This knowledge alone without all the religious doctrine provides a strong feeling of belonging and of spiritiual connection going way back. It's something like what I felt when overlooking the Old City of Jerusalem from the Mount of Olives -- human beings have been here for eons -- this glorious city has been a capitol for them for 5000 years. Similar feelings arse from wondering the ruins of Megiddo, a city that was destroyed and rebuilt at least 28 times as evidenced by the layers in the archeological digs. These humans were so resolute, so tenacious, could not be put down. Some of these feelings I envy in people of the Jewish faith. Christianity doesn't have such feelings. Indeed, Christianity has to borrow those feelings from the Old Testament, ie use the same feelings of history that the Jews use.
So here I sat at this Seder table, feeling an outsider through no fault of any of my hosts, whether close friends or other strangers in the room. I know what to do, I know the order of the seder. The word seder after all means order. I know many of the songs that are sung. I know about the 4 cups of wine and know when to raise the cups in tribute and honor. I know some of the Hebrew. And I can speak with our close friends very eruditely. I can feel warm and fuzzy and can say the correct nice thing to them. And yet, I am an outsider. In some ways I feel I am putting on an act. At some previous seders I have attended, those sitting around me didn't know I was not a Jew and because I knew so much about the ritual, I could play act. I could be a Jew for the night. I recall that feeling after the evening was over and I realized deep inside that I had playacted the whole evening. I am not a Jew and I am sitting at their table at one of their most celebrated holidays. It does put me in my place. But it also speaks to this people and their religion. No one has ever said or done anything to produce this discomfort in me. I have been accepted and treated with nothing but warmth and hospitality. That very major fact must have something to do with why the People of the Book still are a dominant force in modern society.
Monday, April 5, 2010
Arkansas Mother to Arkansas Son:
One of my sisters found this treasure in amongst other papers at our mother's home in Illinois. I don't think I need any permission to reproduce this here. Try reading this outloud to friends or relatives. I guarantee you will break out in a belly laugh. Our family laughed until we cried together on Easter. Then I seriously began to think what it might be like to actually think like this???
Dear son,
I'm writing this slow 'cause I know you can't read fast. We don't live where we did when you left. Your dad read in the paper where the most accidents happened within twenty miles of home, so we moved. I won't be able to send you the address as the last Arkansas family that lived here took the numbers with them for their next house so they wouldn't have to change their address.
This place has a washing machine. The first day I put four shirts in it, pulled the chain, and haven't seen 'em since. It only rained twice this week, three days the first time and four days the second time.
The coat you wanted me to send you, Aunt Sue said it would be a little too heavy to send in the mail with them heavy buttons, so we cut them off and put them in the pockets.
We got a bill from the funeral home, said if we didn't make the last payment on Grandma's funeral bill, up she comes.
About your Sister...she had a baby this morning. I haven't found out whether it is a boy or a girl, so I don't know if you are an aunt or an uncle.
Your Uncle John fell in the whiskey vat. Some men tried to pull him out, but he fought them off playfully, so he drowned. We cremated him, and he burned for three days. Three of your friends went off the bridge in a pick-up. One was driving, the other two were in the back. The driver got out. He rolled down the window and swam to safety. The other two drowned. They couldn't get the tailgate down. Not much more news this time. Nothing much has happened.
Love, Mom
Are you feeling any better yet?
Dear son,
I'm writing this slow 'cause I know you can't read fast. We don't live where we did when you left. Your dad read in the paper where the most accidents happened within twenty miles of home, so we moved. I won't be able to send you the address as the last Arkansas family that lived here took the numbers with them for their next house so they wouldn't have to change their address.
This place has a washing machine. The first day I put four shirts in it, pulled the chain, and haven't seen 'em since. It only rained twice this week, three days the first time and four days the second time.
The coat you wanted me to send you, Aunt Sue said it would be a little too heavy to send in the mail with them heavy buttons, so we cut them off and put them in the pockets.
We got a bill from the funeral home, said if we didn't make the last payment on Grandma's funeral bill, up she comes.
About your Sister...she had a baby this morning. I haven't found out whether it is a boy or a girl, so I don't know if you are an aunt or an uncle.
Your Uncle John fell in the whiskey vat. Some men tried to pull him out, but he fought them off playfully, so he drowned. We cremated him, and he burned for three days. Three of your friends went off the bridge in a pick-up. One was driving, the other two were in the back. The driver got out. He rolled down the window and swam to safety. The other two drowned. They couldn't get the tailgate down. Not much more news this time. Nothing much has happened.
Love, Mom
Are you feeling any better yet?
Saturday, April 3, 2010
The Leather vs Persian rug tradoff.
An interesting light hearted story about marital bargaining and a new updated great room.
Yesterday morning I was lying abed reading the book for my upcoming science fiction bookclub. This book had become a pageturner: terrorists were heading toward Houston with a dirty bomb, a hostile AI was loose in cyberspace, and a nuke was minutes away from Washington DC. How could I put the book down, but Hubby recited a recent quote of the deceased basketball coach, Al McQuire: "If you want to succeed, get out of bed!" So I did and we went shopping for Persian rugs. The first store we came to was Shabahang's in Milwaukee. And low and behold the first rug that we looked at seemed to have the colors that were in
The interesting thing is that I was against the leather and so won the agreement to get the Persian rug. But when the leather sectional arrived, I just loved it. The leather was so soft, and yet the frame and the firmness of the new sofa --well I just loved it. So Amos had made the bargain and it would not have been necessary. That gave him remorse as well. Ah, well, the dealings of a married couple. But, I did "get out of bed and succeed yesterday." I got a new great room.
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