Kim Kennedy...my brother...your brother...
EVERYBODY'S BROTHER!
Medical Updates Jan '11 - May 19th
KEEP THE FAITH!
05-21-11 Please go to the May 21st & Beyond page
05-20-11 Please go to the May 20, 2011 page.
05-19-11 Kim was singing with Marina & Matt this morning listening to Pandora on her cell phone. He was giving them a gift. The universe was giving them this gift. By the time I walked in he was back asleep. Marina informed me that they had given Kim morphine this morning. We had agreed not to give him morphine until he was in pain that required it. He was willing to endure the pain and wanted to experience everything. Naturally, I went to the nurses to ask why and to please refrain from any more morphine or other pain medications until further notice. I was checking in on him and he was fine. They agreed and would let everyone know right away.
There were a few of us in the room when the Palliative Pain Management team and Nurse Robin came in to check on Kim. We asked everyone to give us 5 minutes to have them evaluate Kim. They did want to evaluate Kim, but wanted to discuss the pain management aspect with me. They are very good at what they do and is very obvious that they have experienced this many, many times and will again in the future. They listen well, know how to ask you the right questions and then allow you to express yourself. We spend greater than 20 minutes minutes discussing what we thought was important and what we thought Kim's level of pain and desires were currently. I asked if it were alright if I tried to ask Kim in front of them, so they could hear what he tells me in private. They thought that was a great idea.
"Kim. Kim, I need to ask you some questions, ok?" I asked. He nodded and winked. "We need to figure out your level of pain. We are going to move your body like they do when they rotate you to see if we can reproduce the pain. Is that ok?" I asked. He nodded yes. Jokingly I asked, Do you even know who I am?" He replied, "Thomas Clancy." We all laughed. I asked, "Are you in pain now?" He said, "Yes." I was surprised at that answer. He was lying still with no expression of pain on his face. He had been in this position or similar with no expression of pain and never complained or answered yes before to that question. I asked again, "You're in pain right now?" He said, "Yes." We asked him to describe it. "It hurts me to see my friends and family in pain. I know the cancer is not gone. That it is winning," Kim very sadly expressed. "Yes," I replied. "It's ok," he said. "I know," I muttered with my heart melting. He said, "It's ok." There was long silence of acceptance and gratitude that he knew. It was tough to attempt to protect him from what he deserved to know and I suspected he knew for weeks. He looked at me and said, "I love you." I know I responded and I know it was full of I love you's, but my brain went numb as it is now writing this. I cannot even see the screen. My hands are shaking just as they were then.
The entire conversation shifted. "It hurts me to see them," Kim offered. We looked at each other. I knew I had to ask, "Would you like me to stop the visitors?" He said, "Yes." I asked to be sure, "To all visitors?" He nodded his head yes. I couldn't be wrong on this one and asked him again another way, "Would you like to have visitors?" He simply replied, "No." The doctors offered their experience and it can become overwhelming for the patient to handle the constant flow of visitors and what appears to be new faces. He has suffered short term memory loss and it frightens him to see an old friendly face, but not to know their name. Even after being introduced. We chatted and he answered several questions for the doctors including what we can do for him. He simply replied, "I'm good."
By the end of our impromptu meeting, Kim had said that he wanted to see his friends again. This is the hard part of neurological diseases. We have to interpret what we believe Kim would want for him. The medical staff will intervene as necessary. In the end, they addressed my concern that Kim was being medicated for pain, but it was making him too sleepy to see his visitors. They explained it to me very well. It was now after 11:30AM and Kim was fast asleep. The morphine that was administered at 7:30AM is well out of his system and has nothing to do with Kim being sleepy. This is part of his disease. It is normal for patient's friends and family to want to find anything to blame, because it is very hard to admit and see the progression of the disease. We just heard it from the best medical staff in the world on Tuesday. He was going to get more and more sleepy as the days move on. Eventually, he will fall asleep and then not wake up. I guess we were just not prepared for it as much as we told ourselves we were.
I walked back to the patient family lounge to talk with everybody. I explained the situation as best I could and tried to get through to Marina that we have to accept the process. It was clear to Kim and he could feel our anxiety. That he needed to know that we were not alright with him ever getting sick, but we accept that he is going to a better place. We want the transition to be smooth and pain free. The burden had been removed and we did not need to keep our emotions locked up in front of him anymore. Let him know that we understand and give him the opportunity to have his words.
It was only lunchtime, but it felt as though a month had passed. When we are in the room it feels as though time stands still and we can stay here forever. We know neither are true. We agreed to keep the room to a minimum of visitors. That we would all sit down when in the room. It must be frightening to see people all standing around looking down at you with hidden fear in their eyes and love from their hearts bleeding out of their chests. Marina gathered pillows for people to sit on the floor. We agreed to keep the silence to a minimum and to talk with Kim and amongst ourselves, but maintain a level of respect for when he needs to rest. Thankfully he can fall asleep in a crowd.
Marina laid her head on the pillow with Kim for a little while as she sat beside him. Her body language and facial expression where of someone that found accpetance and peace. She was enjoying the moment and had let go of her fears. Each person took their turns breaking down. Some quietly in the room, others outside in the hallway and others made the journey to the lounge again. The occurrences were not limited to one or two times.
Kim did not cry all day. The sadness seemed to go away from our earlier conversation. He was clearly at peace and in full acceptance of the transition that was coming before him. All we saw from him was that he was sleepy. No pain. No sorrow.
We rotated and shifted, talked and cried. We were in essence having a living wake. We were reminiscing his life before him and giving him the opportunity to hear it playback. A few friends were able to catch time with Kim on the phone. He was unable to respond, because he was a bit overwhelmed with the process and outpour of love on the other end. We have to be careful not to exceed his capabilities of handling these calls. Each one wiped him out.
The hours passed and we all neglected Kim of his dinner. We were aware enough to alert the staff that he did not need the hospital dinner, but not aware that we were hours past his dinner time. Melanie made Kim enough lobster scampi to feed the entire staff. When I opened the container the whole floor became filled with the aroma of something so delicious tha tI was excited for Kim to eat. I know when I return the smell will still be lingering. I wanted his brother John to feed him, but John had some beautiful alone time with Kim and really connecting with him. It was a hard day for him emotionally and he wanted me to feed him.
Marina asked if he wanted to eat and he said, "Yes." We tilted his bed and positioned him into a comfortable eating spot. He was just staring at me. I asked if he wanted pasta or lobster first. He went with the lobster. As I put the fork to his mouth I realized I gave him a bite he could not manage. I removed half and he was able to chew the rest. As he did he pulled me in and down to him. He was just staring at me. I kissed his face and took my seat. He started rubbing my face and then hugging my shoulder with his hand. He started giving me a back rub. I asked, "What are trying to make me cry?" Well, he succeeded. Flood gates opened wide. More inaudible stuff fell from my vocal chords. He just kept rubbing. He would move his hand along my arm down to my hand, give a strong squeeze then back to my shoulder. I used his eyes as a portal to his soul and asked if he knew that I loved him? He didn't release his eyes from min, smirked and then burped lobster scampi right in my face. I lost myself in laughter and he enjoyed the sounds. All I could think about was when I lost mom. I was unable to sleep and went down stairs into the dogs' room to sit and cry. My male puppy, Blu, walked up to me as I was uncontrollably crying and unable to breath. I though he was coming to lick my face or sit beside me. He walked directly up to me and at the tim ei didn't know it, but he pulled a Kennedy on me. He burped right in my face. Both had the same reaction from me. I wonder if Kim remembers me telling him that story? He is so amazing and true to his character how he still wants to console us through this process. I am eternally grateful to the universe for introducing us and allowing Kim & I to have the opportunity to love one another. Thank everyone in the room for walking out and allowing us to have that moment. It must have been frightening to see me breakdown and then follow with the blusterous laughter. You must have thought he finally lost it. But, I believe I finally got it.
05-18-11 Today there was still much to accomplish. First, we needed to open our eyes and learn to breath all over again. I had forgotten this pain from a personal experience and did not warn Marina that is was coming. When we did speak, the first thing I did after hugging her was tell her that I felt similar when I awoke this morning, but nobody own's her feelings right now, although we are all suffering our own personal worsts. I apologized for not forewarning her, but informed her that the reason I didn't , because I forgot that pain. Pain is replaced with smiles and wonderful memories. It will take time.
One of our objective today was to meet with the hospital psychiatry. We needed to know how best to handle little Misha. She has been blindly believing he will walk out of the hospital as 6 years old do. After two hours with Dr. Cindy Moore, we all understood the reasoning and goal. To summarize, children look for the security of their future. Essentially, who will take care of them and who will take care of their mommy.
Misha already understood the illness and has been seeing her dad in his bed for the last 8 weeks. She is a brilliant little girl with an old soul. This was Marina's main concern outside of the obvious. We brought her mom, Baba, into the room and the hospital provided a russian interpreter. Baba and Marina are currently splitting time with Misha and it is important that they both have the same tools to work with and a consistent message. Margaret and Mariposa attended to support, add their opinions and understand what to tell their children as they all play together.
Marina asked if I would handle the conversation with Misha. Of course, I accepted. It was more of a where and a when. As always, God is great and the Universe allowed it to happen the way it was meant to happen. Marina, Mariposa and Misha were out at the Patient/Family Gathering Area. Marina and Mariposa were talking and Misha and I began one of our flirting sessions. Marina began to reach in desperation for anything to hold onto. She thought that maybe if they did another MRI that it would be different. That maybe a miracle would happen. With tears in her eyes she asked Misha if everything was going to be ok? This was a question that these two talked about everyday. She is very open with Misha and Misha handles the conversation extremely well. She is beyond her years. She answered her mom with everything will be ok. Misha had just provided me with the perfect opportunity to open the conversation. I asked, "Misha, may I ask you a question?" She glanced at me and said, "Yes." I asked, "What if it's not? What if things aren't what we want?" She said, "Then that's ok." I asked, "Do you know what that means?" She replied, "Yes." I asked her to explain. She said, "It will mean that it will be just mommy and me." I asked, "Is that ok?" She nodded her head and followed with, "Yes." I then asked a series of questions that were repeated with different names and she answered yes to them all. "Do you know that mommy loves you? Do you love mommy? Do you know that I love you? Do you know that I love mommy? Do you know that Mariposa loves you? Do you know that Mariposa loves mommy?" These questions were posed with appropriate pauses and she was allowed to think about her answers. We were smiling. She was not sadden by these questions. I asked if she understood and if she had any questions? She said, "No." I just waited as she continued to draw. She looked up and told me she had a question. I said, "Sure. What do you have?" She asked, "What if you leave?" I answered simply, "I won't." Then I asked, "Do you think I would leave?" She said, "No." I waited again. She asked, "What if everyone leaves?" I replied, "Some will leave, but the important ones will be with her as long as they can." She looked right at her mom and said, "It will be ok." So, maybe she has understood all along. She knows that she is a survivor. She believes in angels and has always embraced their visits. We did not speak of Kim as an angel, but I get the feeling they have together, whether or not the words were spoken for us to hear. I asked her,"Can I ask one more question? A sort of favor?" She looked at me and questioned, "Adult talk?" I nodded affirmative. She complied and went down to the other end of the room and continued to express herself through her drawings.
It was apparent that the real work will come with Marina. She knows it. It is not weakness, it is reality. She is broken and should be. Her other half is not coming home in the physical sense and she has yet to embrace the spiritual side of him always being with her. I explained to her that when my mom passed away that it was an instant pain in my heart. I was an hour away when I got the call standing in Kohl's shopping. I went into panic mode and ran for my truck. I had to get there. Chrissy drove as fast as she could up 95N. We were 20 minutes into the ride. I asked that she slowed down. I told her mom had just transition and she was now with us. My heart swelled with warmth and love. We were beating as one and she has not gone away from me with only a few exceptions. These were times when my sister needed her more, but she always returns and you can feel the entrance just as you can feel the departure and pain. You just have to be willing to accept it.
Kim had the chance to see many friendly faces not wearing hospital clothes today. He will continue to see your faces as you can make it. Everyone that showed up was so happy to see and did a great job a controlling their emotions other than the outpour of love they displayed for him. As each exited his room, they were all filled with tears, but smiles were lurking from the peace they saw within him. He hasn't changed other than physically. His beauty is everlasting.
John Kennedy has asked that I sit with his mother, sister and niece when they come in on Friday to explain what has happened, what can be done and what is going to happen. The answers are simple, but exhausting. The doctors' tried everything, there is nothing more medically that Kim's body will withstand and he is preparing himself to transition into his spiritual self leaving this physical body behind. We should encourage his preparations for the journey, thank him for all his love and time spent with us.
*******************************************************************************************Another request of Kim's was to not send flowers. His family's welfare is his concern and would like you continue with your contributions to Everybody's Brother in lieu of flowers.
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05-17-11 Today we met with the medical team to go over the communication going forward. On the agenda was also to review Kim's MRI results. Dr. Hochberg had the entire team was present and he asked them all to introduce themselves and what role they play in Kim's care. He then asked me to list the most important items to cover for the meeting. Naturally, physical therapy was my first concern. I explained why, because it was his gateway to the Stem Cell Transplant. My number two was the MRI results, but I caveated that as being number one. If the MRI results were not as we hoped, then the physical therapy was removed from the equation. Dr. Hochberg stopped me there.
The results of Kim's MRI were not good. We were successful in bringing his body into remission at Beth Israel Deaconess Medical with chemotherapy. When he had his seizure, we were successful at Tufts Medical in removing the tumor in his brain. When it came back we moved to Mass General and tried two two different types of chemotherapy. One failed, one was working, but Kim's body began to fail and he was unable to continue. We stayed at Mass General and they administered the most aggressive radiation therapy that was allowed on his brain. It showed very positive signs and he was responding so well.
Unfortunately, last week he started to take a detour from his recovery and it was obvious something else was at play. The cancer developed resistance to the radiation and was aggressively spreading to new areas of Kim's brain. There is nothing more medically they can do to battle the disease. They can, however, make Kim as comfortable as possible. They will ween him off of any unnecessary medicines that are causing him discomfort, but will serve no purpose moving forward.
Kim has been progressively getting more and more tired as each day has passed over the last week. This progression will continue. Eventually he will close his eyes and go to sleep for the last time. He will drift off peacefully and that is all we can be wishful of right now.
Kim is still with us right now and this is not his eulogy. I am going to visit him now and will continue to read your posts. I cannot read anything that says you are sorry or that you will miss him. The medical staff, Marina & I agreed that we would not tell him that the tumors have returned. There is no benefit for him to know this fact. He has lived his life telling people how much they meant to him every day. Today, tomorrow and the next few days are no different. I want to tell you that he loves all of you. I know this because he tells me each visit.
The doctors were thoughtful enough to meet with me first to get an understanding of Kim's wishes and how to explain the results to Marina. Dr. Hochberg excelled at this meeting, as expected. The staff is incredible and are doing everything to help us with the situation.
We do not have much time. They explained the transition would take place within two weeks. Marina and I spoke and we agree that we will expect each day as his last. That way when we wake up tomorrow it will be a bonus to see him. If you are going to come in from out of town, please remember that he may not be responsive and you may be coming back shortly. The answer to the question if you come is not going to be answered by me. That is a personal choice. If you do come, we must insist that you cry outside of his room, as we cannot do that in front of Kim. I promised him a long time ago that if this day were to come, that I would make him as comfortable as possible. I will not break that promise or the one to take care of Marina and Misha. If he were to find out about the tumors spreading he would immediately start to worry about them. He deserves to rest peacefully.
I am not trying to control Kim's life or death, just the process. If all of a sudden his room is filled with people crying he will understand what is going on. Please email if you would like to get up there and I will do my best to coordinate with you and get you up there to see him. We have to be respectful of the others in front of you and behind you, but at least you will see him.
*******************************************************************************************Another request of Kim's was to not send flowers. His family's welfare is his concern and would like you continue with your contributions to Everybody's Brother in lieu of flowers.
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05-16-11 Kim has been taken down for a follow-up MRI. Things are not looking good for our brother. I am not sure the bike is going to help our situation. Kim is not fighting anymore. He is getting progressively weaker and less interested in healing. His tired body is evidence of his state of mind. None of this is fact. It is just observation.
Tomorrow I am meeting with Dr. Hochberg and his team to review the MRI results and reality of the situation. This in no sense of the word means that we are giving up hope. But, we do have to understand there has always been the possibility that we would not have our prayers answered to our liking. There has always been a higher power with a plan and He is leading the way. We are too close to understand the reasoning. We just have to keep our faith. Kim is still holding onto his and will until his last breath.
This will be a long night of worrying and hopefully for not. I have been feeling as though I have lost my best friend for the last few days. It is a feeling that I want to go away, but know this pain will live with me for a long time. Kim has always been generous with me and left me with many wonderful memories. I think last week on that train ride up to MGH when I feared Dr. Hochberg was going to tell me that Kim was not going to make when all of a sudden I found myself smiling and giggling was Kim's way of telling me it was going to be alright. He will be with us forever and never forgotten.
05-15-11 Today was day of less talking and more sleeping. He would wake for brief periods, but sleep most of the time. Even when awake he wasn't smiling or laughing. The journey has been weary on his body and now on his spirit. Who can blame him for needing to rest? It is understandable that he may want to give up. However, we will not allow him to without a fight.
We need to get Kim a bike that is mobile and lightweight. One that I can bring easily in & out of his room. One that has a support on the back of the seat to hold him upright and preferably one that has pedal straps. If they won't get him on a bike, then we will. Does anyone know of such a bike? Does anyone have such a bike? Please let me know if we can borrow it and I will pick it up and return it to you.
From an onlookers perspective, they may assume the fight is over. From our view point, it is just beginning.
05-14-11 After the fundraiser I went to visit with Kim. When I arrived, it was just me and him. He was sleeping. I sat in my chair and just took a moment to reflect on everything. The phlebotomist nurse came into draw Kim's blood for testing of infection. Since he is receiving his anti-biotics through his port, they cannot draw blood for testing as it will cause a false reading. Kim's veins collapsed while still at Beth Israel. The blood draws are very painful for him.
He was sleeping and I sat back silently and watched as she warned him he would feel a little pinch. She stuck the needle under his skin and he didn't even open his eyes. As she move the needle around to to capture the vein it rolled around. The pain awoke him and he started to cry out, but would follow up with an, "It's ok. It's ok." His eyes were trying to focus on me. I did not utter a word. I wanted to be a fly on the wall and just observe. She drew two bottles for testing and a small tube.
When she left, I walked over to his left side and said, "What's up, Bro?" He was gazing off to the right. He didn't look at me and said, "What's up, Bro?" I began talking to him, but quickly realized I was 'talking' to him. We were not having a discussion. He was not looking at me, only staring off into the distance of the empty room. I asked, "Are you watching golf or just not watching me today?" He said, "Just not watching you today." I replied, "That's ok." In return he said, "Just today. I am tired." His expression was one of pure exhaustion. "It doesn't surprise me, Kim. I have no idea how you have been able to be this incredible for this long," I offered. He just mumbled, "I'm tired." I asked, "Would you like me to leave you alone?" He said, "Never." I asked, "How tired?" He said, "Very." I asked, "Too tired?" He looked into my soul and said, "Yes. Too tired." Knowing that someday this would come I replied, "Ok." There was a long pause. We just looked upon each other as close friends not needing to say a word. Minutes went by and he finally broke the ice with, "Thank you." This was a conversation we had many times while he was at Beth Israel when ill and then while diving on the boat when he was in remission. The directions he had given me have never changed and I am well aware of the responsibility that lies ahead of me. I am not here to persuade him of my beliefs or anyone elses. The instructions are clear.
Changing the subject I told him about the Spin-a-thon and how Laura wishes she could come for a visit. He perked up and we began our conversation about life outside of MGH. We had some laughs back and forth. Naturally it lead back to the exhaustion, his pain level and emotional stability. I asked, "Are you still too tired?" He answered, "No, just grumpy." "No worries. I won't pull the plug on the first waving of the white flag anyway," I said. He just laughed, gave me a fist bump and smile.
Manoj showed up mid-afternoon. Kim promised Manoj, Nurse Beth and I that he would lift his left leg when there were two girls in the room. That he would bring both legs to his chest, but there had to be two girls present. He didn't know we had Karen coming in to visit. Moments later she walked in and we all laughed at him. He did perform physical therapy motions, but they were negatives. We would lift his leg, holding his heal and have him resist us pushing his foot toward his chest. He still has quite a bit of strength, but no real muscle mass. The bike is definitely going to be his saving grace. The right leg will motor and his left will follow suit. We just need him to be able to get access to the bike and the physical therapist to be his spotter, as he leans to his left.
The remainder of the visit was normal. Laughter, smiles and positive energy. The evening was approaching as Marina and Misha entered. We left them alone for family time.
05-14-11 PM Thank you to Boston Sport's Club for allowing us to have the fundraiser today. Laura Newfold managed the process making posters/flyers and gathering donation baskets from local businesses. Thank you to Sephora, The Loft Salon, Marathon Sports, Jerry Remy's Restaurant, Superb Cycling, REI and Boston Sports Club.
05-14-11 AM Today is the Spin-Yoga-Zumba-thon at Boston Sports Club at Fenway. Isn't it ironic how 50 Spinners will be doing what they love in order to raise money to support Kim and his family today, but we cannot get Kim onto a stationary bike to literally save his life.
Today, I will attend with great pride and thank each and everyone of the participants. Some will know Kim, others will know of him and others just want to help a stranger in need.
We are falling behind the 8-ball in all facets of recovery and support. We need to regroup and rally the troops.
Somewhere there is a hole in our ship. Somewhere somebody has an answer on how to stop the ship from sinking. Somehow we must make that connection.
05-13-11 Kim didn't get on the bike today. Apparently there is another disconnect happening between end goal and how to get him there. I am not sure what other's are thinking. Maybe he will just get better by resting. Maybe there will be a miracle and he will just get up out of bed and jog for a while. Maybe he will go away and not be our burden anymore.
Not being cynical, but if I was a gambling man, I would go on the latter. Now, I am not saying they are not doing there job. Some are doing just that. Others are doing way more. Others are emotionally invested and want him healthy. Some, I am afraid, just see him as the patient that doesn't feel like doing physical therapy today, so let's not push him or make him uncomfortable or our job any more difficult.
I try not to get discouraged and I don't. I get disappointed. My expectations of self are not different for others. We have all heard that we only use 10% of our brains. I believe the same is true with our level of effort and output. What we think is all we can do is merely only a fraction of our capabilities. There is so much more we can do if we only focus our energies and dedicate ourselves.
05-12-11 3:21PM Dr. Hochberg called and asked if we could meet and have coffee. Although, every other time I would have been so excited, I was unsure of my feeling, but affirmed without delay. I rushed to the Amtrak station only footsteps away from Davitt Design Build, as the Boston train leaves at 3:31PM arriving at South Station just before 5PM.
The train ride was different. There were moments that my brain was playing tricks on me, "Was this the last time that I would be taking this train knowing that my best friend was going to live? How long was he going to give him? What would I say to Marina?"
Half way through the ride I noticed I was smiling and actually giggling. I was thinking of Kim outside of that hospital bed and all of the funny stories that I will be able to share with him. Stories that although he experienced, he will not remember. It gave me great comfort to know that my faith had not wavered. My mind was just playing tricks on me just like when I was a little kid leaping from my bedroom doorway to my bed to avoid the monster from pulling me under or staring at the closet door swearing the door was opening and they were coming to get me. I used to close my eyes and make them all go away. Now, my eyes were wide open, more so than ever before. I see things clearer now and know that Kim will be alright. I noticed my smile was contagious as people that looked upon me would offer one in return.
As I entered MGH, I went straight to Kim's room delivering pleasantries along the way to the staff that we have grown to know and love. Kim was sleeping when I entered his room. I spoke softly and he awoke to smile at me. He is in a little bit of pain and has been refusing pain medicine. I spoke with Nurse Jen (one of his angels) and gave her permission to administer the meds to get his pain under control. It will only help him with his PT. Dr. H. called and wanted to meet with me down at Coffee Central. I told Kim I would be back. If he needed to rest, then go back to sleep and I would return.
I am sure the wait was only ten to fifteen minutes maximum, but I witnessed eternity. My mouth became like a desert and it was getting hard to swallow. Marion, the nurse manager of Kim's floor, saw me standing there and came over to say hi. She wanted to let me know she thinks we are doing a great job with Kim and how strong we are for him. I squeaked out, "Not so much today. Dr. Hochberg called and wanted to have coffee with me. I cannot imagine it is to tell me that Kim is cured. I am a little nervous today." She smiled and rubbed my shoulder in a consoling way repeating, "I understand, I understand." As she walked away my mind went into panic mode with the silent echo of "No, not the sympathetic 'I understand' and a condolence rub. This can't be happening. What does she know? Where is Dr. Hochberg?" I could swear people could sense the anxiety and read it on my face. The stares were no longer followed with smiles. They would look and then look away to avoid eye contact. I could hear myself screaming, "Has anyone seen Dr. Hochberg?"
I tried not to stare down the corridors, because I did not want to read his expression from a distance. Then I heard the soft, gentle voice reach out to me, "Tom." I smiled and said, "Hello." We went outside to chat. My mind was racing, but my heartbeat remained constant. My brain kept preparing me to hear the worst, but my heart would not bite. I realized before he opened his mouth to speak, as we sat on the bench that it was not my heart, but my faith that would not bite. It was rock solid and I opened my ears and heart to hear what it was that he called me here to discuss.
He opened up with, "I would like to apologize. I would like to apologize for the lack of communication and the porousness of the information that you have received." My mind was at ease and finally took a seat next to my faith. He explained that MGH is one of the world's best hospitals, because the doctors specialize in their fields. Kim currently has eight specialists working with him this week. While this is the upside, the downside is sometimes, more often than not, the communication suffers between staff and patient. Dr. Hochberg explained that he believes the most important thing in the hospital is not the doctors, not the nurses or equipment, but the patients. He does not like anyone to suffer, physically or mentally. This is why he became a doctor and that is why I love him.
He went on to say that although Kim is not in the place where he would like him to be, that he is not worried. He knows Kim is a fighter and will do his part. Dr. Chen & Dr. Hochberg will do their parts. We just need Kim's body to help us out. He needs to get that left leg strong enough to ride on a stationary bike for 2 - 3 hours a day. He does not need to compete with anyone but himself. His body's strength will feed his mind. His mind will feed his soul.
Dr. Hochberg reaffirmed he is not giving up on Kim. He truly believes Kim will beat this cancer. We are looking at a ten day window to heal the infection and the blood clot. He has encouraged and challenged the physical therapy department to get him on that bike during that time-frame. We will re-evaluate in two weeks time. If his left leg is coming around, then they will do the Nuprigen injections again to collect the remaining stem cells. This is about another week. Somewhere between the Nuprigen and collection they will order another MRI looking for CR. Once physically fit enough, they will move him to stem cell transplant and he will begin his next journey.
Before I left Kim was repeating the mantra, "I am going to get this. I am ready. I can do this. I am going to cycle. I am going to get stronger." We repeated this several times. I got up, said goodbye with hugs & kisses for both of them and made my way to the train. Kim got the better part of my energy today and I was happy to release it to him. The train ride was quite different than the train ride there.
05-12-11 9:36AM Dr. Oklu called to inform me that Kim has a blood infection. He will have his apheresis port removed at bedside. This will need to be replaced after the infection is gone and before he resumes the stem cell collection process. It will be a relatively painless process.
05-12-11 4:05AM Nurse Lisa informed me that Kim did not really come around from the Ativan although he would wake up when necessary for medicine.
05-11-11 7:03PM Dr. Tonaka called while I was in Verizon trying to fix my cell phone, which the screen decided to go blank on me yesterday morning as I was giving consent to the procedure. The conversation started off like this - "Mr. Clancy?" he asked. I said, "Yes." "This is Dr. Tonaka from MGH. I have some bad news. Can you talk?"
The space above isn't me hitting the return button by mistake. It is the silence that fell upon the earth for me. I muttered, "Of course." He went on to tell me that when Kim had returned to his room that his heart rate was in tachycardia (beating extremely fast). They did a CT scan and an Ultra Sound to confirm their initial thoughts. Kim has a blood clot that has lodged itself into his lung. I did go a little numb myself and was looking around for some calcium to continue the conversation. I needed air, so I walked outside. He went on to say that the blood clot isn't so much the bad news, because it is manageable. The concern is that in order to break it up they have to give Kim anticoagulants, which will thin his blood and therefore thin the blood clot. This is is direct conflict with the properties of the Nuprigen injection that were making his blood more viscous, so that they could collect the stem cells.
The anticoagulants will be in his system for approximately two weeks before they can begin giving him the Nuprigen injections again to prepare him for stem cell collection. In the meantime, once he is stable from the blood clot, they will search for a rehabilitation bed for physical therapy. This will potentially give him three weeks of strength & stamina exercises.
Is this ideal? No. Is it reality? Yes. Can we handle it? Yes. It is just changing the order not the outcome. We will push forward and make the most of the time we have between now and the stem cell collection process. There is no need to tell Kim he has a blood clot. There is nothing physically that he can do to prevent it. There are things we can to to keep him moving with range of motion exercises. Telling him will do one thing and one thing only...mentally exhaust him through anxiety. If you read the post below, that is the common diagnosis of Kim by Dr. Chen and yesterday Nurse Don Francis. He needs to have mental clarity and that will come with love and serenity....not medical information from us in a state of panic. Please adhere to this request.
05-11-11 2:07PM Nurse Don Francis called to say that Kim was doing great. He mentioned right of the bat that Kim was agitated, but Dr. Chen claimed that was status quo. I had to interrupt and defend that Kim was the most loving, easy-going guy you will ever meet. It is actually hard to get him in a bad mood. Don laughed and explained he meant nervous or anxious and that he agreed that Kim was an incredibly likeable guy that didn't seem to be irritable at all. Don said that Kim's early count was looking as if they would be in the 800,000 stem cell count range and that he would have to do multiple collections.
My immediate questions was if there was a correlation between patients that require multiple collections versus successful stem cell transplants. The answer was no. He personally had seen one patient go through five collections and successfully through his transplant. He did Kim an Ativan to relax him and he should rest peacefully through the night.
05-11-11 8:04AM Dr. Makar and Dr. Tse were responsible for the stem cell collection. The logistics were pretty simple. The procedure resembles giving platelets with one line creating a loop in and out of your body. Once outside the body the machine will extract the stem cells for collection. At any given time Kim will have 250ml of blood outside of his body. This is about half of a blood donation. There are no real complications or side effects other than a tingling or numbness that calcium will reverse. The goal is to collect a minimum of 2,000,000 stem cells.
05-11-11 Kim slept through most of the night and woke up around 4AM this morning. This has been his routine over the last few nights. The stem cell team has already been in to see him and given him his last Nuprigen injection. They will come back for him in a little while to bring him over to the Jackson building for the harvesting of his stem cells. The procedure will take place at 7:30AM under the guidance of Dr. Chen. Today's collection will reveal if there are rogue cells present in his marrow. Even though the presence may be there, they have the ability to spin the cells and separate out the cancer cells.
Let's focus on them not requiring that today. Today's focus is on pure healing of Kim's body going forward, not trying to prevent or cure the cancer. This process is being handled by the professionals. Let's focus on the rebuilding of his cell structure to become better and healthier than before his body was stricken with this disease. Together we can harness this energy. Please follow the instructions on the White Light email sent out this morning. If you did not receive an email, then you probably haven't requested to be on the list. We need all of you and all of your energy for just a fraction of your life.
05-10-11 8:00PM Team Kennedy went a little too far today. We pushed too hard. Kim is wiped out and not able to exercise. Tomorrow forward we will pace ourselves to 20 minutes of light workouts every two hours until we can increase the intensity or duration by small incremental steps.
There are two forces at play with the overexertion:
One force - all of our desire to get him out of bed ASAP flows through our efforts, but it is too much for him to handle at one time. It's very similar to electricity. We all appreciate Thomas Edison for not inventing electricity, but figuring out how to use it. The electricity comes into our homes at a controlled rate. It steps down it's power through a transformer on the pole outside of your house to a manageable level inside your house. Now think of lighting. It's beautiful, but detrimental if it strikes you. Today we were like lighting. Tomorrow we will be contained and deliver an even flow at a level manageable for Kim. We will be the transformer. We can step it down so that we are even a lighting bug there to display the light show while he pushes himself to his limits, not ours.
The second force, is our mental picture of Kim is in optimum health running forever down with the L Street running club in South Boston, or hitting the gym, skiing, scuba diving or any other sport you would like to imagine. The reality, he is only that person in our minds right now. He is a temporarily weakened version of that Kim. We have the responsibility and obligation to get him back to his optimal health. Just with marathon training, you do not start out with an IronMan. You start out with a 5k, then a 10k, then work your way up to a half marathon, then to your goal of the full marathon. Between each phase increase is a greater period of elapsed time and intensity of training.
Be patient, be consistent, be mindful and be grateful we have this opportunity before us. With this in mind, he will be great, he will be healed and he will be home soon.
05-10-11 12:30PM Dr. Hochberg just called. He visited Kim and was very encouraged by his development. He has a deep enthusiasm and elegance when speaking of his photography, but lesser so when talking about current events. His left arm is mobile, but his left leg is still weak. If he was to order a MRI scan we could see the melting away effect of the lymphoma and the reading could possibly be disappointing. He would like to wait a week on the MRI.
His major focus was on Kim's strength. He would like him to be able to ride a stationary bike and walk on a treadmill assisted, but under his own strength. The goal would be to have him workout 2 - 3 hours a day. This will prevent him from getting skin disorders, diarrhea and other complications with being bed ridden. Transplants are tough for healthy people. They are really tough for people in Kim's current condition.
He sees no downside to the time spent between the radiation and today. The radiation is clearly still wiping out the tumor cells and Kim continues to improve. We just want his strength to improve at a faster rate. Dr. Hochberg threw out a challenge. He said that Kim was his second most motivated patient. This patient is determined to do an Ironman competition next year. Dr. Hochberg, we accept the challenge. Team Kennedy will have Kim ready. He just raised the bar.