Tuesday, November 24, 2009

Doctor Visit Number Two - UCLA

One week after visiting Dr. Adashek at Cedars Sinai, Crea and I found ourselves at UCLA visiting with Dr. Yeh. As I mentioned in the last post, the facts seem to be clear at this point and surgery appears imminent. Because of this, I did not anticipate a lot of new information coming from Dr. Yeh but merely Crea determining who she would be more comfortable with as a surgeon. As is with life and certainly this entire situation, reality was not quite as expected.

We arrived at UCLA and it was immediately a different feel. It was a much bigger facility with a lot more foot traffic so we began the process feeling somewhat part of a herd. I think we both were thinking the small office environment at Cedars with 6 or so chairs in the waiting room was a more inviting setting than the 40 chair waiting room we sat in at UCLA. We were greeted at the receptionist stand friendly enough. Crea handed over a packet of information that she had filled out prior to arrival and was then asked many questions........the answers of which were in this same package Crea had provided. I only mention this because it was very funny to watch my wife deal with the scenario. Crea is truly one of the nicest people I know. She is very caring, very welcoming and very friendly. She was trying to draw on all of these characteristics and hide the tremendous frustration she was feeling at having taken all the time to fill out the forms yet verbally have to respond to the same questions........just prior to each of her answers Crea would kindly point to the packet of information sitting on the desk. To the world, Crea appeared fine. To me, I knew she was boiling which for some reason struck me as funny. I could definitely see a Seinfeld episode coming out of the interaction...Seinfeld, Table for 4?

We were immediately called in to the office and were initially greeted by a student. The paperwork mentioned the possibility of student interaction which I know is vital to training our surgeons of the future but we still found ourselves a little frustrated. Funny enough, Crea was yet again responding to questions to which the answers were contained in the packet of information now residing with our student doc. Dr Yeh ultimately arrived and he had quite a personality. Dr. Yeh actually was a self referral for Crea and we were very unprepared. Crea didn't bring a lot of the medical records so we put the Dr. Yeh in the awkward position of having to rely on conversation. Funny enough, one of the papers we did have with us was from the recent blood tests which he noted were processed at a USC Lab. His comment was that the USC Lab is one of the best in the country for this type of test but he still managed to sneak in......."as much as it pains me to say that"........I love USC haters so we have to score one for Dr. Yeh at this point.

We walked Dr. Yeh through the entire history....cancer diagnosis while pregnant, surgery in 2004, radiation in 2005 and all the recent findings. He is very thorough but would definitely be a good addition to the Seinfeld episode. Add to this episode the fact that we were really not sure the proper protocol for getting the opinion of a second surgeon. Do we mention the prior visit? Would it offend Dr. Yeh? Were we committing medical adultery against Dr. Adashek? We were not sure so we remained silent on the topic. We just presented the facts and must have appeared to be medical geniuses with some of the questions we asked.

Dr. Yeh walked us through the evidence based theories on why to operate or why 'not' to operate. He said because of the suppressed growth, Crea might live to be 85 and die of a heart attack if we do nothing. He gave extreme examples where you would probably not operate on the 80 year old in bad health in which surgery posts many complications and you would clearly operate on the 19 year old in good health (minus the cancer) that could clearly tolerate surgery and has a long life yet to live. Enter Seinfeld as Dr. Yeh began to say that Crea is somewhere in the middle of very old and 19 (risky direction here) but then recovered to say she was clearly closer to the 19 year old scenario which would lean towards surgery.

After much discussion, Dr. Yeh wanted to perform his own ultrasound. He actually insists on this so he can see the issues with his own eyes and draw his own conclusions. It is this ultrasound where things started to turn a little south from expectations. The outcome of the new ultrasound was actually the discovery of 3 more cancerous lymph nodes bringing the total identified up to 6. While the doctor was very clear to say this discovery does not change the fact that Crea will be okay, I found the news to be a little disheartening. Maybe 'disheartening' is not the right word. I am confident Crea will be okay but the knowledge that cancer is inside my wife is frightening thus the fact that more cancer is inside my wife than originally thought is even more frightening. I think the other issue is that as a husband, I feel helpless. I can not cure my wife. I can just get my arms around things and try to comfort the situation. When the facts change, it is hard to get to stable ground.

At the end of the ultrasound, Dr. Yeh showed us the pictures he captured. Unlike the ultrasounds I am used to seeing, there was no beating heart of a baby. Instead we had to look at pockets of cancer inside my wife's neck. It is not a lot of fun coming face to face with your nemesis but that is what it felt like. I was staring into the eyes of cancer and it was not a pretty sight. Dr. Yeh then drew a diagram so we could understand where the cancer is in relation to Crea. It is all contained in the right side of her neck. Some is fairly close to the original scar and some is extended a little farther out to the side. From this news, I asked the question as to whether the original entry into Crea's neck could be utilized. Please note I could care less about the scar, where it is or how big it is. I know my wife cares which is why I asked the question. I never even notice her current scar and I doubt others do either....unless they too have had thyroid surgery and are sensitive to the process (kind of like you never notice so many Honda Elements until you actually buy one and then thousands are on the very street you live on).

My question lead to the final detour from expectations. Dr. Yeh has a more aggressive approach and believes in taking out many of the lymph nodes in the area where the cancer exists. His analogy was that if one house in the area is on fire, remove all the houses in the zip code. He presented two scenarios. One was to extend the surgery both upwards and outwards which would remove multiple sections of lymph nodes from the entire right side of Crea's neck. The second scenario was to slightly extend the current scar and take out 2-3 sections of lymph nodes. He ultimately settled on the second scenario because of data which indicates the cancer does not tend to invade the upper section of the neck. Either approach seems more aggressive than Dr. Adashek who believed you go in and get as many lymph nodes that have cancer or look suspicious. Which approach is correct.............I wish I knew the answer but all of this information sent my brain into overload.

-why didn't the first ultrasound catch all of the cancerous nodes?
-would Dr. Adashek have done his own ultrasound to find the additional cancer and should I care?
-if no additional ultrasound was done, would the additional cancer have been found during surgery and, if not, what would the consequences be?
-Dr. Yeh said surgery could wait until January/February but again seemed to indicate not waiting too long. Why? If earlier we were told Crea could live to 85 and die of a heart attack, what is the rush?
-Dr. Yeh said there is a 1% chance of harming the vocal chords during surgery leaving Crea hoarse for the rest of her life. I asked about his personal history and he said it was consistent with the 1%. Dr. Adashek said his history was zero..........why the difference? Is it the aggressive versus non aggressive approach?
-Dr. Yeh would want to examine the vocal chords prior to surgery. I don't remember this being mentioned in the first visit.
-If you go with a less aggressive approach now, and more lymph nodes become cancerous at a later date, is the next surgery more risky due to scar tissue from what is now two operations?

All things to think about. All things that invade my thoughts throughout the day. I am sure both surgeons are fantastic. Maybe there is no wrong choice here but my wife is involved and I just want her to be okay. I want the cancer out and to stay out. I want my wife to know she is beautiful with or without a scar and I want a cure for cancer. That can not happen without all of us committing to making it happen. I am certainly not skilled enough to find the cure but I can run and I can bike and I can sort of swim. I need your help though on this little journey my family finds itself on. I am committed to raising $10,000. For my wife, I will raise at least that much. If you can help with a donation, please click on the link above. If the link is not working, you can go directly to my site at http://pages.teamintraining.org/los/lavatri10/4mywife . If you are not in a position to donate, I completely understand and am grateful for your taking the time to read my long winded words.

Thursday, November 19, 2009

Surgeon Visit Number One

Very sorry for the delay with this update. The entire family is now in Fort Lauderdale visiting my Grandmother (Nannie) and Great Aunt Betty. They are both in their 90's and really the only family remaining on my fathers side. My original story started to some degree with my Aunt Betty back in 2002 because we were all flying in for my Aunt Betty's 90th birthday. 'All' really only represented my Mom and Dad from South Carolina and myself from Los Angeles. My father was an only child and that is apparently a genetic trait for I am also an only child. That does not lead to large family get togethers at least it it relates to my fathers side of the family tree.

Anyway, it was a few days prior to departure for my aunt's birthday and I was struggling to get a response from my father regarding last second plans. This was very unusual because we talked literally every day and as it turns out, my worry was justified. When I picked up the phone, I could hear in the tone of my mothers voice that something was not right. She told me my Dad was in the hospital and had arrived with only minutes to spare because he was failing to get enough oxygen as his red blood cells were being suffocated from all the bad white blood cells being created from what would ultimately be diagnosed as leukemia. Anyway, I never made it to see my Aunt Betty and amazingly have not been back since. She is now 97 years old and has never seen my children so this trip is a very important and long overdue one. To be honest, she has only seen Crea one time and that was at our wedding 10 years ago. I have some amazing memories with my Aunt and Nannie and it was great seeing the spark light up in each of them today as they watched the kids running around their place. As it turns out, this trip turned into a needed break for Crea as well. The news we received regarding her cancer has been very tiring. I am exhausted thinking about it and can only imagine how exponentially more difficult it is on her.

So, back to my wife. As with the first diagnosis, the news is all good. I should correct this to say the news itself is horrible.......the chance for a positive outcome is very high. Here are the facts as I know them. Outside of the fact that I would have a hell of a bedside manner, I certainly was not meant to be a doctor so this will be written in a very elementary manner. Five years ago my wife was diagnosed with thyroid cancer. Albeit cliche, if you ever have a gun to your head, are being told you must choose a cancer and that you must choose a form of cancer without hesitation.........your answer should be 'Thyroid Cancer'. Whether that is factually true......I do not know. I do know the survival rates are extremely high. That is what we were told 5 years ago and that is what we are being told today. In fact, we are being told that 30% of the time, thyroid cancer will return after the first treatment. I am fairly certain that we were not told this the first time around. Had we been told this, we might have been less surprised on November 3, 2009. I want to add here out of respect for my wife that while the survival rate is very high, my wife still has cancer. Cancer takes lives. We all know it is horrible so I am not really sure how easy Crea rests at night with the news that survival rates are high. She has something inside her that ultimately can take her life and it is a scary place to be. She is not in control. Cancer is in control. I think the reason I say this is that I do not want to belittle the situation in any manner. I will digress slightly back to the loss of my daughter Isabella. While a very small minority of the population, I have encountered folks that seem to believe all should be fine since 6 years have elapsed since Isabella's passing. I know others that have lost children and they agree with the following statement as well: while time does somewhat heal your wounds, you are NEVER quite the same after the loss of a child. Things can be perfectly normal one second and in the next you see something that takes you right back to a hospital room watching your wife go through labor that does not conclude with the usual crying baby to let you know all is well. You flash back to holding this little angel in your arms screaming in hopes that it was all a bad dream and that she....or you....would open your eyes and everything would be okay. It can be as simple as the end of the movie, 'The Butterfly Effect' (watch it and you will understand) in which my wife and I instantly went from ok to hysterical. Recently it was a picture in the video for the song 'Trinity' by Paper Tongues. It was a baby's hand laying face up in the hand of an adult. I have that same picture with Isabella, Crea and myself. It instantly took me back........and solidified 'Trinity' as my anthem for this new challenge my family faces.

I am good at digressing so let me get back on track. We are visiting 3 surgeons during the month of November. The first was Dr. Adashek at Cedar Sinai on November 16th. He came highly recommended as one of the top surgeons in this field. My thought process surrounding the different visits was to be certain that surgery was required. After meeting with Dr Adashek, we are fairly certain surgery is required so now it will come down to Crea choosing which surgeon she is most comfortable with. Another self discovery from this appointment was how uneducated I think I was the first time around for Crea. I remember sitting in the waiting room with family and I remember being scared but when I look back, I think I was uneducated. It could have been my subconscious just trying to focus on 'survival rates' as that was a much more positive place to look than the bad things that could once again impact my family.

With the first surgery, I remember it taking far longer than I thought it should. I was beginning to lose my mind wondering what was going on when the surgeon finally came out. He said it went well but he definitely did not seem as upbeat as I hoped he might be. I think it was this moment.......when the surgeon shared his findings......that I let my mind go to the reality that could have come from my wife having cancer. He explained that the cancer had made it to several lymph nodes and he also informed us that he had to remove one parathyroid gland. 'Lymph node' echoed in my head. I let it rattle around and then I stored it for 5 years until the doctor told us the cancer had returned. I knew the 'lymph node' news was not the best news but chose to focus on the fact that my wife was okay. Regarding the parathyroid gland, that is important to know for the next surgery. We all have 4 parathyroid glands that serve the function of controlling the amount of calcium in our blood and bones. You can definitely function without one but calcium levels have to be monitored for Crea.

In case I have not been clear, Crea's first surgery involved the removal of her thyroid gland. During that process, the cancerous lymph nodes were discovered and the parathyroid gland was removed. The next step of treatment involved radiation therapy administered via radioactive iodine. Removing the thyroid gland is not the same as removing an organ. You can not be certain you removed it all or that some thyroid tissue did not break off and land somewhere else in the body. It is because of this that the radioactive iodine is administered. Your thyroid gland absorbs iodine so if you add radiation to some iodine, go on a diet that deprives your body of all iodine and then take in the radiative dose.......it should go straight to any remaining thyroid tissue and kill it. This is what Crea did. She went on a funky diet that had zero iodine and then took a little blue pill (not sure it was blue but you have to love The Matrix.....after reading this to her I was informed it was HUGE and ORANGE) and was then quarantined for what I remember to be a month. From there it has been maintenance and monitoring and until November 3rd, all was well.

What we learned on 11/3/09 was that over the course of the prior 12 months, what were minor abnormalities had grown to over 1 centimeter. Three lymph nodes are affected and there is one extra node that is not a lymph node but its very own growth. In addition to the growths is an increase in the level of of thyroglobulin in Crea's blood. Thyroglobulin is a protein that can only be produced by the thyroid gland. The fact that it increased, combined with the growths above are a very good indication that there are still thyroid cells in the body. The last fact is that the growths described above were only discovered via ultrasound. This is important because part of the maintenance is taking some doses of radioactive iodine for the sake of body scans. During these scans, nothing was ever seen. You might think..great news but, in Crea's case, it is not. Because there is thyroglobulin, there are thyroid cells. Because these cells are not absorbing the iodine, it is the last indication that there is something wrong with these remaining cells........i.e. CANCER. These are the facts. Dr. Adashek did a great job at being thorough and walking us through the trail of evidence. Unfortunately the evidence is clear. He added further clarity to the situation by giving the following information:

-the cancer inside Crea is suppressed. Because she has no thyroid, she takes medicine every day. This medicine, Synthroid, is a synthetic thyroid hormone that replaces the normal hormone her body would have produced. It also keeps any remaining thyroid cells in her body from actually working which keeps the cancer at a slow growth rate.
-because of the first point, he said we have the option of waiting until after the Holiday season for the surgery.
-most importantly, and this hit me like a brick, he said this is not something you would wait until Summer to remove. This put a very small band around the process and brings me back to the point that my wife has CANCER.....albeit the good kind.......it is CANCER and it must be removed. I think the other alarming piece to this statement was that we waited so long the first time around so that Jaden could be born. Nobody gave us this Holiday versus Summer analogy and I am not sure if that makes me feel better or worse. Had someone given us the analogy, would we have acted differently. I am not sure. I do not like to live with regret but I also hate that tiny thought that asks.....did we do the right thing? As I am typing right now, my wife sits 10 feet away from me.....alive and playing with our little girl Thalia. Another 10 feet away is my son Jaden playing and watching television. All are with me so...as of typing this......the right decisions were made and I can only pray that this next surgery is successful and my family stays intact.

The final points tie to the surgery itself. Dr. Adashek is going to look into greater detail at the results of the first surgery and have an expert look at the latest ultrasounds. Beyond the risk of cancer is the risks tied to removing the cancer. These risks are twofold:

1)Crea has already lost one parathyroid gland. The hope is that the one she lost is also the one near the current cancer. This would make it easier to get to the growths and remove them without harming another parathyroid gland.

2)The surgery entails being in close proximity to Crea's vocal chords. There is risk to harming the vocal chords especially because there is now scar tissue in the area that could make it more difficult to find the cancerous growths.

Thanks for reading. Thanks for all the amazing support. We have received very kind words, very kind offers and very generous donations that all mean so much. In the days since I communicated news of my wife's cancer (we have not named it for it is not a welcome guest), over $3,000 has been donated to Team in Training. That is amazing. People are good. People care. People can accomplish anything. People can change the World. It is because of this that I am certain CANCER will be beat.

Saturday, November 14, 2009

Good Plus One

I have shared my story many times. It has always been a 3 pronged one:

-My father was diagnosed with leukemia in September 2002 and battled until January 2004 when he passed away.
-A few months prior to his death, my daughter Isabella passed away at birth.
-A few months after my father passed away, my wife became pregnant again. While pregnant, she was diagnosed with cancer.

These are the simple facts that have a lot of complexity built into the detail. My daughter Isabella passed away 1 day after my fourth wedding anniversary. The only reason it wasn't actually on my anniversary is that my wife fought with all she had to push until after the clock struck midnight. Either way, instead of having a romantic evening with my wife to celebrate our marriage, we were in Santa Monica finding out our precious girl didn't have a heartbeat.

Regarding my wife's cancer diagnosis, we had the very difficult task of deciding whether to have the baby before or after attacking the cancer. The difficulties that accompany such a tough choice are far reaching. Your life or your baby's life....which do you risk. We chose to have the baby first and on October 29, 2004, my son Jaden was born. Less than two weeks later, my wife was in surgery to remove the cancer and immediately after the Holidays she began radiation treatment. This radiation treatment forced my wife into quarantine. We had a new baby......my wife could not hold him. I remember standing in the doorway of her room holding Jaden up just so she could see him. No hugs, no kisses, just a look from 25 feet away.

On November 3rd, my story took a little detour. I have always shared my wife's portion of the story as having beat cancer.......with the caveat that she has beat it 'to date'. I am not sure why I ever added this caveat. Was it because it wasnt official? Was it because I lacked faith or was afraid? I am not sure I will ever know the answer but as it turns out, the caveat was unfortunately justified. November 3rd was supposed to be the day my wife, Crea, and I learned about the very last follow up to her cancer diagnosis 5 years prior. Instead, in a very surreal way, my wife and I learned the cancer had returned. No follow up. No maintenance. Treatment must begin again. Am I mad.......I would be lying if I didn't say 'Yes'. My wife and I have endured our fair share of hardship and live to tell about it. Am I sad.....I would again be lying if I didnt say 'Yes'. I am sad because I know my wife is scared. I am sad because my wife has to go through more surgery and treatment and there is not a thing I can do about it. We were told about an optimistic outlook and I am grateful for that. The truth, however, is that cancer is inside of my wife. The truth is that cancer is a horrible thing and until someone looks me in the and tells me my wife is cancer free.......I will be uneasy.

So, my story continues and you might ask why I call this Blog - Good Plus One. The answer is this:

If you focus on just the facts of my story, you only see hardship and loss. Hardship is not where I choose to focus. Loss is not where I choose to focus. I choose to focus on my belief that Blessings come from even the most trying of circumstances. After my daughter passed away, I had to give the hardest speech of my life at her memorial services. I spent so much time on writing and practicing the speech. When I came out from the back of the church, I was amazed at how many people had showed up. Truly overwhelming to see so many friends and family (unfortunately none of my family could make it as my father was 3,000 miles away fighting for his life). I stood in front of everyone acknowledging we were all together for a sad circumstance but instead of spending our moments together in sadness, I wanted to focus on the blessings that came from the loss of my child. I think this was my definining moment....everybody has one......this was mine. After the service was over, I was thanked for my speech by many. Folks had come not knowing what to say. Folks had come wondering how they could help me and my family. Instead........it was my words that helped them. Blessings come from the most trying of circumstances.

Shortly after my daughters' passing, doctors told us that my fathers leukemia was terminal. I had to sit with my father and watch a video of Isabella's memorial service. How do you sit with your best friend, watch a memorial service for someone else's passing knowing the future holds the same outcome for you. My father could have been sad but instead gained comfort in the belief that Isabella would be waiting for him in heaven. Blessings come from the most trying of circumstances.

Because of Isabella's death, my wife had to undergo many medical tests to determine if something was wrong. While the cause of my daughter's death was not necessarily determined from these tests, the fact that my wife had cancer was discovered. If not for these tests, the cancer could have grown undetected and my wife might not be alive today. We like to believe that Isabella volunteered for Heaven knowing my father needed her and so that my wife could live. Blessings come from the most trying of circumstances.

So, for me, Good Plus One means that although bad circumstances will present themselves, Good will always be on the winning side. When tough times appear, be patient.......the blessings will be there in time. Keep your eyes, your mind and your heart open. The Blessings are there or will be there in time. For now, I will pray that my future holds the blessing of a healthy wife. I would appreciate those same prayers from you and if you would like to join me in the fight against cancer, please click the link at the top of the page.