Week of 3/30/11
A few weeks ago I went out with a friend of mine, Thomas Davis. Over dinner we discussed a wide variety of subjects. One of the things we discussed was my "courageous battle with cancer". He told me of some close friends who unfortunately lost their battles and others who were still battling.
As usual when people speak to me about the subject I talked about it, but when he was saying that he admired my positive attitude throughout the whole ordeal I shut down. I told him it was not a big deal I just laid there. The ones who get the credit are my support group; first and foremost my wife and kids. This of course was followed by my extended family and friends.
Unfortunately Thomas is one of those people who are known as country dumb. He pretends to fall for my BS and I believe he does. In reality he sees right through me. As we were finishing he says, you should write a blog about your brush with cancer. Actually whom I kidding it wasn't a brush it was a head on collision. There I go playing it down again.
I demurred, saying blogging isn't for me, it’s for geeks. Again he just looked at me and knowing my weak point, said "Don't do it for yourself, do it because you'll be helping others". Write about what you went through as bluntly as you can. That way other people can know what to expect, prepare themselves for what was coming up and perhaps gain some measure of comfort. I was about to write knowing there was light at the end of the tunnel; however who am I kidding, I'm not at the end of the tunnel yet. Knowing there was light IN the tunnel would be more accurate. Any way as you can see I caved and here we go. I will try to be as accurate as I can but not only does time heal all wounds it fogs our memories (at least mine) as well.
My story is in two parts, my first run in in ’98 which I will lovingly refer to as CANCER PART I
and my current one, which I will refer to as (you guessed it, right?) CANCER PART II which I hope is really CANCER, THE FINISH (I don’t mean finished as in dead).
CANCER PART I
It was April of 1998 and I woke up early in the morning with a terrible stomach / back pain. I went to the bathroom thinking I was paying the price for eating so many mini salamis the night before. But the pain just kept intensifying to the point that I was throwing up. I still thought the pain was from what I ate and was making deals with God in my head never to touch the stuff again if only the pain would ease. Finally Fern (my wife) heard the distressed sounds coming from the bathroom and came in to find me rolled up on the floor. She quickly called Hatzoloh (EMT volunteer service). They were there in minutes and quickly diagnosed me as having kidney stone pain. They put me on a stretcher and off we went to Maimonides Hospital. Meanwhile I had my cell phone in a death grip, my oldest daughter, Ricky, didn’t know it yet but Shuie was going to propose to her that morning. I was waiting for the phone call so I could say Mazal Tov! I may have been in pain but I had my priorities straight.
We got to the ICU and they set up an IV line and gave me drugs to help with the pain (which was easing anyway). I was still refusing to give up the cell phone and the nurse was about to get a crowbar to wrest it out of my hand when the call came. When it eased enough they took me for X-rays to look for my kidney stone which was never found. To this day it’s a mystery as to what caused the pain. However I was released and went home to take the day off work and relax from my ordeal.
I clearly remember sitting down at the computer to look up information about kidney stones when our phone rang. It was our Rabbi and he sounded very nervous. He told me that when he heard I was taken to the hospital he came to check up on me. By the time he got there I was already gone. The x-ray technician asked him who he was and he introduced himself as my Rabbi. The technician then asked him a favor to please call me and tell me that he just noticed a large spot on the left side of my x-ray and could the Rabbi please call me and let me know that I had to get to a pulmonologist right away. Not very professional I might add.
Needless to say my wife and I were a mess. We called a close friend of ours who is a Gastro doctor and he arranged an MRI for me. I took that MRI Thursday evening and Monday we had the results (the doctor had it Friday but held back until Monday). There definitely was a growth in my chest and it MIGHT not be terrible.
When I was growing up in the 60s and 70s my parents and the people around us were so terrified of cancer they wouldn't even say the word. They would say in Yiddish "yener machla" that sickness as if just saying the word would bring on the dreaded disease. In my gut if not in my mind cancer was a death sentence. We made an appointment with a cardio thoracic surgeon who told us I had to have surgery pretty much immediately. We told him that our daughter's engagement party was going to be held the upcoming Sunday night and that I was not able to have the surgery before. He scheduled it for Monday at Mount Sinai.
The engagement party was beautiful and I enjoyed it immensely. Thank God all my life I have had a gift of being able to compartmentalize. During the party I didn't give a second thought (consciously) to the next day's surgery.
Monday May 11th I was there at Mount Sinai bright and early. They took my vitals and the doctor was shocked to find my blood pressure normal. "Aren't you worried ?" he asked me. "No," I said, "if you mess up I won't know about it. You should be the one to worry, you'll have to deal with my wife." Speaking of whom she came in and gave me a kiss and I was wheeled away. Believe it or not I was more nervous about getting the IV needle stuck in me than the surgery.
Next thing I sort of knew was waking up in the surgical recovery ward with a bunch of other people in beds and listening to lots of moaning. When the nurse realized I was up he rushed over and started asking me questions. I told him that I refused to answer anything until someone went and told my wife that I was awake and brought her in. He asked my what made me think she was still there, it was seven hours since the surgery began. "I know my wife," I croaked back at him, "she's not leaving until she knows I'm settled." They sent someone to get Fern and I started cooperating.
I asked her what happened and how the biopsy turned out. Not too good it seemed. The freeze biopsy showed a malignant lymphoma so they just closed me back up. No easy feat, mind you, there was a 6 to 7" cut that went around my left chesticle and through my ribs. It looked like I had had a mastectomy. It was closed up with metal staples, I still have them at home in a bag.
A few hours later they sent me up to a semi-private room and Fern said good night and reluctantly left to go home and take care of of our children. There are seven of them and the three youngest ranged in ages from nine to six.
They had given me enough pain killers that night to knock out an elephant so it seemed pretty safe to leave me. Well the doctors didn't take into account my weird reaction to drugs and about three hours later I woke up to find my roommate standing bent over me and when I opened my eyes he started screaming "Quick, we have to make a break for it!" Scared the living daylights out of me! Thank God the nurses heard him just as he was grabbing my arm to "help" me escape. Needless to say I didn't get much sleep after that.
Next morning my friendly GI doctor was there in his electric blue suit checking up on me and making sure I was receiving proper care (he came every morning that I was in Mount Sinai Hospital). When he heard what happened he told Fern to get me a private room. At that time it was "only" $150 a night extra, ouch, and I was hopefully going to be out by Friday.
Then the morning shift nursing began. They made me sit up. The pain was unreal. I never felt pain like that before. I remember telling one nurse she wasn't Hitler but she probably was related.
The rest of the week was a blur of impressions. I'll free associate through the week and share as many of them as I can remember.
Tuesday morning I remember calling the Grand Rabbi, a man of 90 years old and telling him that things looked grim. He said he thought he remembered that I was informed of this cancer the day my daughter got engaged. Yes, I confirmed. Well then, he said, you have nothing to worry about. The future father-in-law must be healthy. Without another word he hung up the phone. I called his son, a holy man in his own right, and said that I didn't want to seem disrespectful but I thought that his father was losing it. Here I am calling from what I thought was my death bed and his answer was the future father-in-law must be healthy. He told me that he would speak to his father and would get back to me right away. About ten minutes later he called me back and told me that his father told that he knew exactly what he was saying and to whom he was saying it to and all would be well.
I don't remember this part but my wife tells me that our GI doctor friend came later in the day and told her that she shouldn't give up hope. They found thymic cells in the body and it might be a thymoma as opposed to lymphoma and if it’s contained we might be able to do surgery.
I remember saying to the nurse who was giving me a sponge bath that I couldn’t believe I was sitting there with the family jewels hanging out and I wasn’t at all embarrassed. All I could think of was that I was getting cleaned off. She told me, “Joebhai (she was Indian and we connected discussing my India trips. Bhai means brother) there is no shame when you’re in pain.” Unfortunately, these words have proven true many times over the ensuing years.
They brought me hospital food, a vegetable cutlet, I took one bite and that was it, it tasted moldy. Fern angrily said, “You will have to learn to eat healthy after this, you might as well start now!” all I said was you eat it and show me how. She took a bite and threw up into the garbage pail (she didn’t even make it to the bathroom). Smug.
Mowshe told me how he and my brother Favie were driving back to Brooklyn from the hospital and were composing my eulogy, discussing whether my brother should speak in English or Yiddish an deciding to go for English in deference to Fern. One of the lines I remember was “He was not only my brother he was my friend.”
Strange how there really wasn’t any conscious feeling of terror. I’m sure there must have been some subconsciously but looking back I don’t remember any. But then again as I told Fern when she asked me if I ever thought about the deeper meanings of life, I’m just shallow.
I remember two of my friends coming in to visit me and their hello was “So how does it feel to be dying of cancer?” The look of horror on the nurse’s face when I burst out laughing was priceless.
Week of 4/3/11
I remember being taken out to have another test done on me with no explanation as to why. They took me for a “Nuclear CAT Scan”. My Rabbi had just come to visit me as they were loading me onto the gurney to wheel me out. I’m sure they were trying to be gentle but any slight jostle after being cracked open was quite painful and I must have gasped involuntarily. The Rabbi turned white and started screaming at the orderlies, “Be gentle! Be gentle! This is a human being.” Anyway I figured how bad could it be? I had no problems with regular CAT scans why should this be any different? WRONG! The “bed” they put me on was very narrow and they made me pull my arms in tightly over my chest. I thought I was being torn open again.
I also “designed” a piece of jewelry (not a good idea when under the influence of drugs). Gordon’s ordered 500 pieces of the entire set. Boy did that series BOMB.
When I was a kid my father’s friend had a bakery and he always told us how he would bring the nurses and doctors cream puffs and how they do anything for him. Well I brought jewelry for the nurses, nothing very expensive, just something to say thank you. Suffice it to say I had private duty nursing. They couldn’t do enough for me.
I spoke to my son Ari last night and he suggested bouncing back and forth between cancer part I and cancer part II. The reasoning is that I can write about the events that are occurring now and are fresh in my brain. I will do so and try to keep some semblance of order through headings each time I do a time warp (I’ve also clarified some of my earlier ramblings so this makes more sense). So…
CANCER PART II (THE GIFT THAT KEEPS ON GIVING)
Unfortunately I will have to give a little background information so this makes sense.
One of my biggest complaints throughout this whole “life experience” (I was going to say ordeal but that sounded too whiney) is that some of the doctors were less than forthcoming with information when I asked what the possible present and future side effects of my treatments could be. The doctor told me I could have radiation burns (got them), fatigue (yup) and loss of appetite (and then some, thank God for my pharmacist and Marinol).
I then asked the radiation oncologist how about the secondary cancers I read about. He answered me, “It’s true that radiation can cause a secondary cancer, however it happens in only about 15% of the cases. More importantly it takes 15 to 20 years before it emerges so worst case scenario I will buy you another 15 years. If you don’t do the radiation the thymoma (cancer) you had now will probably come back earlier.”
I then asked him about another side effect that I heard one of my friend’s father got, he couldn’t swallow (seeing this is site is rated PG I will not make any cracks). He told me not to worry MOST people don’t get this side effect (which for all of you out there who don’t know better is a BALD FACED LIE! More about this later, when I discuss pink elephant sperm) and odds were that I was due for a break. I just looked at him and said, “If the odds meant anything when it came to me I wouldn’t be here in the first place.”
As time went along and there were no new side effects I was lulled into thinking I had seen the last of them and just had to work through what I was left with (more on THAT later as well). Fern and I went to Chicago for Shabbos to see our latest addition and all was well until Friday night when suddenly it felt like somebody shoved an ice pick into my right ear. I managed to keep it to myself until Sunday so as not to disturb everybody’s Shabbos. Saturday night I Googled “effects of radiation treatments on teeth”. I got 17,000 hits. The results were not pretty. Basically it can kill teeth, bones, mucus and saliva glands just to name a few. When we got back to New York Fern, who had just had a wisdom tooth pulled so was in complete sympathy with me, called the dentist and told the receptionist that I needed an appointment. She was told that there were no appointments available. As all of who know Fern are aware, that answer didn’t fly. Needless to say I had an appointment at 2:00 PM. The dentist told me I had a lot of fun things to look forward to, oral surgery, teeth being pulled and implants. I asked him if I was going to have implants anyway could I at least choose my cup size. In the dentist’s own words, he was not amused.
As my daughter Chanie said, the good thing about all these side effects is if God forbid the secondary cancer ever hits all I’ll say is, “leave me alone let me die in peace.” Just kidding, I’ll go kicking and fighting but sometimes it felt like the cure was worse than the illness. Sorry for the kvetch but I had to vent.
I understand why the doctors did not tell me about all the side effects.
First, there seems to be too many to list.
Second they want to deal in probabilities not possibilities so they only mention the most common side effects. You want to know everything? Read the paper that comes with the prescription, you’ll probably never take the medicine. May cause drowsiness, sterility, blurry vision, loss of vision, seizures, hallucinations and then you have to read the second page for twenty more side effects.
The third and in my case I think the main reason why they weren’t up front about everything was that my cancer is so rare that they aren’t sure what to do so they decided to do as much as they thought I could withstand. In fact my oncologist Dr. Halmos, a great doctor, a wonderful and compassionate human being (not in any order of importance) and someone I count myself lucky to have interacted with, told us that I tolerated the chemo so well, even though they threw the book at me so to speak. He thought they should give me another round after the surgery as well just to be super sure, after it wasn’t a big deal. I just looked at him and in a very cold voice said some very nasty curse words to him and let him know where he could put his chemo. He really seemed surprised to see this side of me. I told him, “Just because I didn’t complain and joked around didn’t mean I tolerated it well.” He decided not to put me through chemo again.
Lastly, there was a very calculated reason for not telling me. My case was published probably while I was still in the ICU recovery room. Some of the doctors were salivating over the chance to get their hands on me. In fact at one point there was an issue over whether the doctor could accept our insurance and he told me not to leave, he would work it out some way. Very unusual in an environment where each office has a Nazi at the door to make sure your co pay is given before they even let you use their bathroom. In short I was a guinea pig and they wanted to see what would happen when they did this, that and the other thing… In fact all the doctors involved met once a week to discuss what that thing was they were going to do. To give them the benefit of the doubt they wanted to see the effects of their protocol so one day they can help another person who comes down with a recurrent invasive malignant thymoma.
However, at the end of the day, for me it would have been better if knew what to expect.
CANCER PART I
Picking up where I left off, still in the hospital recovering from my first zipper, still looking pretty grim. They had me blowing in a stupid tube and shuffling around the hospital hallways in order to strengthen my lungs and body. Meanwhile Fern is shuttling back and forth between the hospital and the kids keeping a very strong front for them and me. Later I found out that when the doctor came out of surgery and gave her the news she broke down and the doctor didn’t know WHAT to do. But she never lost it in front of us. Mowshe was babysitting me so she could feel free to do what she had to.
I was off the pain control and on Tylenol (extra strength) by the second day (I didn’t like the way morphine made me feel, more about that later as well).
Wednesday night Fern, my daughter, Ricky, and her Choson (fiancée), Shuie, came to visit along with my friend Marvin. A pretty young doctor came into the room and asked everybody to please step out for a few minutes as they had to remove my catheter. Believe me I wasn’t looking forward to it. I don’t want anybody sticking anything up the exit ramp, which they did after I was under anesthesia, or yanking anything out of it, which they were going to do when I was awake. Well to be perfectly honest it didn’t hurt even a bit. But I asked her to wait a minute before she walked out. I then proceeded to start screaming as loud as I could for a few minutes. From what I heard Shuie and Marvin both turned white as a sheet. The doctor thought it was hysterical.
Thursday night at about one AM Mowshe walked into the shul (to check the Mikvah I’m sure; control freak) and was startled to find the Rabbi sitting there alone crying and praying. When he asked what was wrong the Rabbi looked at him and said “Yussie needs a Refuah (healing).” In my eyes, sitting there like that and crying for every member of his congregation who is in pain, is the sign of a great man and a true leader. I am sure his prayers along with all the others made a difference in heaven and of course on earth.
All this time, Monday through Friday, I’m fighting to get out of the hospital before Shabbos and the doctors are waffling back and forth. Friday morning the doctor finally decided I could go home Friday afternoon in time for Shabbos. Fern packed me up and I signed all the release forms. It was a bittersweet, knowing I would be back for all kind of treatments and, in my mind anyway, not holding out much hope for their success.
They put me in a wheel chair and we were actually in the hall on our way to the elevator when the doctor ran up to us, smiling, huffing and puffing with reams of paper in his hand. “Mr. Weinreich, Mrs. Weinreich, great news,” he said. “The second biopsy came back and it’s a nonmalignant thymoma!” this meant I could come back in a few weeks and they could chop me open, or as Ari referred to it, fillet me, and remove the thymoma. Interesting that in mind I no longer referred to it or looked at it as cancer, it was a THYMOMOA, something else, I could live. Hey we all cope in our own ways.
Fern arranged for my brother to take the kids for Shabbos so I could get some rest.
And Eddie Segars arranged to have a Kosher deli in the neighborhood cater all our Shabbos meals so Fern didn’t have to deal with the cooking, a classy move.
They gave me a “coughing doll” which was to be held tightly against my chest when I coughed to minimize the ribs moving and scraping against each other. If I wasn’t fast enough the pain was terrible. But nothing prepared me for my first sneeze. I just remember a blinding flash (literally everything went bright white) of pain. The next thing I knew I was curled up on the floor. You don’t want to try this at home
Monday I went (shuffled) to work for as long as I could, an hour. I remember the girls crying when they saw me walking in an inch at a time.
Thursday we went back to the surgeon for him to check me out, remove the staples, and schedule the next surgery. After checking me out we sat down in his office and told us he was pleased with my progress and would like to schedule the surgery in three weeks. I told him he would have to make it five weeks as I had to go to the JCK show in Vegas. For people who know me that was no surprise. Fern then asked him when I could shower myself so she wouldn’t have to keep giving me sponge baths. The doctor burst out laughing and told her that he had told me I could take showers as soon as I got home. J Sometimes I wonder why she puts up with me.
I went to Vegas and had a great show. Interestingly enough on the return flight I was sitting next to a woman who also had been operated on for a thymoma, what are the odds?
Four days later, Monday morning again, I went back to Mount Sinai Hospital for my second surgery. This one wasn’t fun. It started right from when they were trying to anesthetize me. There were two anesthesiologists, the doctor and a resident. This time, they told me, I was going to get some valium first then an epidural. After the valium I turned on my side and I felt them poking around my back for what seemed like an inordinately long amount of time. Then I heard one doctor ask the other what was wrong. He responded that the needle wasn’t long enough. When the first doctor asked if he should get a longer needle the other one said no, I can do this. Suddenly it felt like he took the palm of his hand and started pounding on the needle in my back, I felt like a bottle of ketchup. They must have gotten it in because the next thing I remember is waking up in sheer terror. I couldn’t breathe, I couldn’t talk, I was choking. There was a tube down my throat! I tried tearing it out. Alarms started going off and I vaguely heard someone say “Oh @#$% (PG remember?) he’s up. Knock him out, knock him out.” One of the phobias I have been blessed with is a fear of choking / drowning; probably because I almost drowned when I was about 12 years old. I woke up again and this time they had my hands tied down and Fern was sitting there next to my bed and a nurse was there as well. She told me to stay calm and I wouldn’t choke. They were just about to pull the tube out. Not a fun experience at all.
When describing the next week in the hospital I will give flashes of the highlights and lowlights that stand out in my memory, not necessarily in chronological order. Once again, time and drugs have fuzzed out my memories.
This time we were smarter we arranged for a private room right away. The pain was a lot more intense than the first surgery because they did the full chest crack right down the center. Just Tylenol was not an option so they loaded me with morphine. It didn’t even make a dent so they kept upping the dosage. While the higher dosage worked for the pain, it didn’t really work out very well for the rest of me. I believe the problem was that my blood wasn’t oxygenating and I was also having problems breathing. The surgeon was called and he showed up with a resident. I could tell Fern was on the verge of losing it. The surgeon ordered me off the morphine immediately. He then told me he would be performing an intubation on me. For those of you who are not familiar with this procedure, an intubation is when they take a long tube and shove it up your nose and down through your throat and into your chest and suck all the mucus out. Of course this makes you feel like your choking (see my earlier phobia) and hurts like hell. There are things that can be done to mitigate these effects. They can administer valium to clam you down and there is anesthetic spray they use so it doesn’t hurt quite as much. My surgeon did none of these. After he finished water boarding me and I stopped flopping around like a fish out of water (he actually tied my hands down for the procedure) he untied me and looked at me with a big smile and said, “Look at how much gook I got out of you. I think I’m going to come back tomorrow and do this again.” As scared as I was of repeating this experience again the next day, I was more worried about Fern. The idiot had actually let her stay in the room for this procedure and she was as white as a ghost. My throat felt like somebody had used a file in it but I managed to croak out, “Doc can you come here please.” He walked over to my bed and I grabbed him by his testicular region (PG PG PG) and told him, “If you come near me with that tube again I’m tearing these off.” His resident looked at him and said “I think he means it.” (PS I didn’t use the same surgeon for my CANCER PART II surgery. He didn’t come back the next day, he sent his associate who must have been warned because he didn’t even mention intubation.)
After the doctor left, the resident came back and told Fern that it would be a good idea if she hired a private duty nurse for that night. She had lost a patient that was exhibiting a lot of the same symptoms I was. Needless to say Fern got me a private nurse. This led to a whole new set of problems. The regular nursing staff, who were the same nurses as I had during the first surgery, were insulted. I was their patient, we were friends and they felt as if we were calling their nursing ability into question.
Week of April 10th 2011
When the private duty nurse asked for my charts they mysteriously “disappeared” until the doctor threw a fit. I told Fern goodnight and told her she didn’t have anything to worry about as long as I had a private nurse. In Ari’s famous words, “What else could go wrong?” I found out.
That night, after Fern left, the nurse looked in on me and promptly settled in a comfortable chair in the doorway to my room and I can only assume fell asleep. Remember, they stopped my morphine earlier that day. Can you say withdrawal? What came next was the worst night of my life, period. I have never told anybody the details of that night and probably never will. Suffice it to say that if you’re having very realistic hallucinations, an overactive imagination is not a good thing. I laid there all night in sheer terror, too afraid to move a single muscle. In the morning the private nurse left and I heard her telling the regular nurses that I had a great night and didn’t make a peep. When the nurse came in to check on me she saw that I was so terrified I had sweated through my gown, sheets and blanket. These sweats and nightmares went on for about three months. Sometimes Fern had to change the sheets and blankets two to three times a night. I haven’t let them give me morphine since.
I would be remiss if I didn’t mention Dr. Gribbetz, may he rest in peace. He was my pulmonologist and as great a mentch as he was a doctor. One night he examined me before leaving for the night and took a lot longer than usual. Concerned, I asked what was wrong. He assured me that there was nothing wrong, he was just being thorough.
About an hour later he came back to my room. I asked what was up; I thought he was leaving for the night. He had left, he said, and was on the highway on his way home and he realized that I might have been worried because of the long exam and what he felt was an inadequate job of calming me down. So he turned his car around and came back to reassure me. Not many doctors would do that.
I remember laying there at night in a twilight state and Ari came in from Providence. He thought I was asleep and leaned over and kissed my head and said, “I love you.” I opened one eye and looked at him and said “I heard that.” Good thing I was laying on the pillow so he couldn’t use it to smother me.
