Month: September 2020

The next few days in the Cancer ward were pretty unceremonious. No sleep, docs and nurses in and out, a few family visits and phone calls with the store, Lor and big Nick. After all, I had only seen Nick twice for about an hour and our new baby Joe only for an hour after he was born. I needed to get better. My blood counts were increasing again with the therapy given to me as well as the lowering of my temperature through the antibiotics. The trend was positive so far. Hopefully, by the end of the week, I will be headed home again.

While I was recuperating in my room, Dr. Dave came by and we had a long discussion about the reason that he kept me in the hospital and could continue to bring me back. GVHD… Graft Versus Host Disease. Dave had mentioned this before in our initial consultations but we would now delve into the dangers and importance of this phenomenon. GVHD was a two pronged sword. A natural and necessary byproduct of a Bone Marrow Transplant. As much as you needed to get it, it could also kill you. It needed to be managed carefully although there was not much control that you could have over it. Disconcerting to say the least. So what is GVHD?

As defined by Explore cGVHD… “Graft Versus Host Disease is characterized by a combination of tissue inflammation and fibrosis, which manifests itself across multiple organ systems”. “Fibrotic lesions can develop across multiple organs where Fibrosis is a major contributor to life threatening complications and significant morbidity. Patients can develop multiorgan manifestations, including skin, mouth, joint, eye, GI tract, esophagus, liver and lung manifeststations”. In layman’s terms in regard to my own personal case, I needed to get GVHD as a means of destroying any original remaining bone marrow while allowing my donor marrow to proliferate. The fight that occurs inside my body between the donor DNA and my own DNA has to be somewhat significant as the original DNA will try to grow back. That fight is the premise and cause for the Graft- the donor marrow VS the Host- my marrow. This must occur, but the degree of occurrence enables the outcome. The Host DNA must be obliterated with no ability to return. Got it so far? It is pretty interesting.

Bottom line was that I needed to get GVHD. It could be mild to almost no GVHD. This was not what Dr. Dave wanted. With very little or no GVHD the transplant could revert itself leading to almost certain relapse. It could be slightly aggressive but manageable. This would be the best case scenario. A manageable case would be uncomfortable but offer the result most likely to afford me a successful lasting cure. Lastly, it could be very aggressive. This would be bad. Uncontrollable GVHD would most certainly lead to prolonged disability or death. This discussion with Dr. Dave was more enlightening than previous but most necessary. He would be watching me very carefully as we discussed the symptoms and signs of GVHD progression. The anti rejection drug that I was taking also played a huge part in the outcome. The dosages had to be conditioned to allow for the occurrence of GVHD to the extent that it would be conducive to a successful transplant and make sure that my body accepts the new marrow. This drug along with large doses of steroids would be the course for now. GVHD symptoms can range from skin rashes to joint issues, Ocular dysfunction and Lung function impairment. The latter resulting in significant morbidity. It could also lead to significant psychological distress. Chronic GVHD could also result in disability which could make returning to work at least two to three years or more a reality.

Ok, Dr. Dave. Such a wealth of information he was. I guess that’s why he was the best. He never pulled any punches. Like me, he believed in the reality of a situation. You can sugar coat any opinion, belief, story or situation, but reality is always what it is… the truth….like it or not. I was glad he was my doctor. He kept me informed no matter how bad the reality was. This was a nasty fight. Round 1 was getting through the diagnosis. Round 2, the actual transplant. This was Round 3, surviving the aftermath. Dr. Dave was Mick. The Manager, Trainer and Cut man. I was Rocky. Being Rocky sucks. Round 3 sucks. They all sucked.

Next up: Helpless

Let’s get back at it!

What a difference! The post op general cancer step down unit was no Ritz Carleton. I was used to the 5 star treatment in my bubble. The transplant unit nurses were specially trained to handle the needs of these oh so special patients. A virtual white glove experience, hospital wise. Now only five days removed from that unit, I was back in unfamiliar territory….with a roommate! Human interaction other than hospital personnel was a real change of pace. I’d rather be in the bubble. So whats the story?

I was not well. My temperature was hanging in the 101 to 102 range. This was not good. Dr. Dave came in to explain the situation. After the initiation of my transplant, I began receiving a drug called Cyclosporine. I would be on this drug for at least a year. This was one of many maintenance drugs that I would be taking, but the most important. I received it intravenously while in the unit but at home it was delivered orally. It was not only a dreadfully tasting concoction, it was also very harsh on the body. Cyclosporin was an anti rejection drug. A Bone Marrow Transplant is considered like any other transplant, heart, liver, kidney, etc. Anti rejection drugs are needed to help the body assimilate the foreign organ into your body and help it to blend and thrive as your own. In addition to the wild weekend that I hadn’t expected, the new drug was very harsh on me. Not only was my temperature high, a sign of infection, my blood counts had also dropped to levels that were conducive to even more injury. The worst fears the doctors have are blood infections, pneumonia, heart issues and something called “Graft Versus Host” disease. To contract any of these issues while my immune system is so compromised could easily lead to my demise.

Were we scared? Yep, very, very scared. Again, hooked back up to the IV pole with multiple lines to bags of, well, lots of bags. The Hickman Catheter was again working overtime. I still had a terrible time trying to eat and get nutrients into my body. I knew it was going to be a very rough night. Lori came after work to see what was going on and then left soon after to get home to our babies. We were so lucky to have the help from our families. The uncertainty was so hard on everybody. My roommate was actually the father of another Jeweler that worked in town. He also had a form of Leukemia but was in his early sixties and had just been operated on. Nice guy but neither of us were great company. It would be a rough night to sleep. So much going on all of the time. Nurses in and out constantly. I really was feeling like shit. Very anxious too. Dr. Dave was very concerned and told me that the antibiotics they were giving me would hopefully handle the fever and additional transfusions of blood products the other situations. I would stay in the hospital at least another five days. So basically, 56 days in the bubble, four days of freedom and now six days maybe or more… on the Cancer floor. Not a happy camper was I. Let’s see how it goes.

Next Up: “Graft Versus Host Disease”

I’m going to take a few minutes here to celebrate today 09/20/2020 and tomorrow 09/21/2020. “Another week in paradise” will have to wait another couple of days.

Today marks the anniversary of my release from the hospital 24 years ago. After almost two grueling months of enduring and surviving my bone marrow transplant, I made it home in time to watch my son Joseph enter into this world. I know that I am rehashing information that I very recently wrote about, but every year that I get to be here is so special to me. I had two very important goals to reach when my journey began. The first of course, to survive the transplant so that I could get home to Nick and meet Joey. The second, to see Nick graduate from Kindergarten.

Tomorrow, I will wish Joey a happy 24th birthday. As usual, he is traveling…. in Florida this time…celebrating his special day. Happy Birthday Joe! And of course, I got to see Nick graduate from Kindergarten, Middle school ( somewhat because he spent his graduation ceremony in the hospital with an appendicitis attack!), High School and College. I have so much to be thankful for, I am a very lucky guy. I appreciate everyone of you that are following along with my blog. Those of you that aren’t very familiar with my story, get ready for a wild ride. I wish that I could say that everything was smooth sailing after the transplant but that just wasn’t the case. My heart aches for what my little boys had to witness and endure for so many years watching me battle cancer. I also can’t imagine the “What if?” if I didn’t make it. For so many, that “What if?” is a reality. I feel so bad for those not as fortunate as me.

Especially this crazy year, 2020, hug your kids and remind them how special they are and tell them how much you love them everyday. Or text them. They never answer the freakin phone :).

Next Up: Another week in Paradise…(I promise)

I held that little boy in my arms like you can’t imagine. I waited almost two months for this moment that I thought may never happen. Back in the maternity ward, Nick was able to join us and meet his baby brother Joe. The range of emotion I was feeling was off the charts. I had both boys on my lap and Lor was resting in the bed next to us. How amazing was this. I was alive and this was my family. The euphoria short-lived though. My immune system was so fragile. The longer that I was exposed to the hospital air and those around me, the more dangerous it would become. It would be goodbye for now and back to my parents home. This was a day for the ages. Less than twenty four hours after being released from the bubble, my little guy came into this world. He knew what he was doing. Supercharging me with hope and the strongest will a man could ever feel to survive.

By the time I got back to my parents house I was more than spent. Completely. My In-laws would be holding down the fort with Lori and the boys at home and my parents were taking care of me. The weekend passed as most of my time was spent resting and wishing that I could be home helping with my boys. Unbelievably, my wife would have to go to work on Tuesday. Two days after she got home from the hospital delivering our son. It was just a never ending, no rest for the weary situation for her. Thank god she was so strong. At least, she didn’t have to go down to the city every day anymore. But I did. My first appointment was Tuesday. Back to see my favorite person…Doctor Dave. At least I didnt have to have another bone marrow aspiration. Not yet.

Monday afternoon I was scheduled to have a visiting nurse come and check up on me plus clean my Hickman Catheter. I couldnt wait to have that contraption taken out of my chest. So annoying. It went well though. I think she weighed me in at about 135 lbs. I really needed to be able to taste my food again. It was so hard to eat. I still had horrible mouth sores and everything tasted like shards of metal. Nutrients were so important at this stage of recuperation for me. I needed to gain weight. It was going to be hard to pull off.

Tuesday morning came and the laborious routine of getting dressed and ready to travel began. Heading back to Hahneman hospital, my home away from home, I dreaded the trip. Up the elevator to the 15th floor, into the office that I hadn’t seen since my admission for the transplant. Off of the elevator, turn left for the offices or right for the bubbles. It was very strange. My visits to the office before the transplant, I would try not to stare at the patients ravaged by chemotherapy. Sullen, pale, scarves, baseball caps, many in wheelchairs, the waiting room was full of them. Now, it was my turn to be a member of the club. It didnt feel good at all. It was awful. I was now the spectacle. The new patients coming through the door were trying not to look at me now. Go ahead, I understand.

Anyway, my appointment didn’t go very well. Dr. Dave did not like my appearance, my blood counts were dropping and I had developed a fever. I guess so much had transpired in the short time after I was released that my body was not ready for it. The wheelchair ride to the inpatient cancer ward was swift and not so sweet. No wonder they left the Hickman Catheter in me. “Here’s your gown Mr. Keenan”. “Welcome back”.

On a side note… this past week, 9/10/20, I just returned from a trip to Florida. I was visiting with a good friend of mine, relaxing for a bit, when a familiar song began playing on Music TV that was on at the time. My back was to the TV but the distinctly familiar sound of the opening waterfall sounds hit me like a brick. The tears simultaneously began flowing. I tried to control the emotional response that automatically triggers itself. My friend looked at me while this situation unfolded mid conversation and didn’t know what was going on or what to think. He asked if I was alright, like WTH? Trying to compose myself, and feeling like an idiot, I apologized and tried to explain. The words ripped into me as the tears continued to flow… “How many special people change?” ” How many lives are living strange?” Twenty four years later…that damn “Champagne Supernova”… Gets me every time.

Next Up: Another week in Paradise

I had to leave my boy again. It was such an amazing and uplifting moment for me to see him again. For a two and a half year old baby boy to have to process what was going on. I can’t imagine what was going through his head. Nevertheless, I had to say goodbye again after the short visit and was off to my parents house to quarantine, recuperate, eat and rest.

I had actually only lived in our families new home in Fort Washington for about two months after we moved in. A new job after graduating college afforded me the ability to move out and into my own place at that time, about ten years prior to now. I wasnt sure how long I would be staying there but it was a welcome respite after two months in the hospital. I unpacked and made myself comfortable in my new bedroom then went to the bathroom to take a really, really long shower. It felt wonderful. Afterwards, I settled in, called Lor and Nick to say goodnight and tried to go to sleep in my new digs.

About nine am the next morning, the 21st, my mom woke me to tell me that Lori was on the phone. “My water broke. I’m on the way to the hospital”, she said. No freakin way! Is this really happening! I barely had the strength to get out of bed. This was a miracle though and there was no way that I was going to miss it. I struggled to get dressed. Time was of the essence. We were using the same doctor that delivered Nick three years before at Frankford/Aria hospital in Northeast Philadelphia. It was about 45 minutes away and Lor and her dad were already on the way. I made it to the car and we were on our way. My mind was racing. Did this kid really know that I had just gotten out of the hospital the afternoon before? Did he realize how immunosuppressed and weak I was? Did he know the exact day that I would be available to be there to welcome him into the world? Pretty amazing I thought. Step on it Dad. We have to get to the hospital!

The hospital provided a wheelchair when we pulled up and we made our way to the delivery room where Lor was already in labor. The nurses at the front desk were apparently very happy to see me. The nurse asked me who I was there for and I told them that it was for Lori, that I was the father. Bursts of laughter broke out! They said “Thank God!” and proceeded to take me into the back where my father in law was dressed in a mask and gown. He looked so relieved to see me! Apparently, when they got to the hospital, Lori was rushed into the delivery room and when the nurse asked Nonno who he was, he said “The Father!”. He was so nervous, the nurses thought that HE was the Father! Nonno was off the hook. Dressed in a mask and gown… they wheeled me into the birthing room. I looked like I should have been in the cancer ward but here I was. I made it. Lor made it too. 56 days of hell and on number 57 here we were ready to welcome the son that I thought I may not ever meet. Yes, it was a miracle.

Unlike Nick who tortured us for 28 hours, this kid shot out like a rocket. Two and a half hours, he came out so fast that the doctor almost dropped him! There he was though. A beautiful baby boy. It was overwhelming for me. I just cried. My wife was amazing. He came two weeks early so she hadn’t even had a second to breathe. I was so proud of her. And Nick. He would be a big brother now. So many changes, so fast. Again, this is what I was fighting for. This is why Leukemia would not win this time.

We found out later that when Lori’s sister, brother in law and brother got the call in New York they left so quickly that they forgot to pick up Lor’s Mom and had to go back and get her! It was a glorious day. We were so blessed. I got to be there. His name you know…his name is Joseph.

Next Up: So Much to Take In.

It was Monday morning the 16th of September. I woke up to a knock on the glass of my bubble. The nurse on duty had a warning for me. Dr. Dave would be in at some point in the morning to treat me to another bone marrow aspiration. I knew it was coming. He would deliver the pain along with a date for my release. So he said at the end of last week. I was so ready to go home. I knew it would be rough transitioning to civilian outpatient life but I couldn’t wait to get out. Preparations were being made at home for my release. My parents had the bedroom ready. Lori was on call to be ready to take off and come get me. Poor girl was ready to burst. Just another two weeks to go for Joe. She was still working everyday and coming to the hospital every afternoon. Everyone was excited.

Dr. Dave rolled in with his entourage and tray of big needles and syringes. I swear that he loved torturing me. So, I assumed the position, grabbed the table with my hands and toes. You know the drill. The news afterwards would be worth the pain. “Ok Keenan, you are going home Wednesday”. Woohoo! It was an emotional moment for me. I had made it. My fifty/fifty chance of leaving the hospital dead or alive was over. This didn’t mean that I was totally out of the woods though, it meant that my odds were getting better. I started preparing for departure. All set to go, packed and ready. Wednesday morning came and went. Dr. Dave wasnt ready to let me go yet. Talk about a let down. Friday the 20th was the new date. Really?

Ok…now we fast forward to Friday. The stage is set. Paperwork signed, all of my precious pics of Nick packed up, dressed in actual street clothes and sneakers. Sneakers. I haven’t worn shoes in almost two months! All of the nurses on duty were there to say goodbye. They were just amazing the whole time. I still was quite shaky though. Dr. Dave gave me the exit interview. I would see him on Monday. Lor and my Dad were there to take me home. The wheelchair ride to the front door led me outside into a glorious sunny afternoon. Freedom.

In the car, the smile I wore under my mask was unprecedented. Our first stop was my house to see Nicky. The ride seemed like forever. When we pulled up to the house I could barely hold the tears back. Nick would be waiting for me along with Nonno…Lori’s dad, and Karen, our nanny. Fifty six days ago I left him. I didnt look like his dad anymore. I wouldnt be able to stay long, just a few minutes. The garage door went up and I got out of the car and waited at the entrance. The inside door opened and out he came. “Hi buddy” I said. Very hesitantly he walked towards me. He looked confused. Almost frightened. After all, I looked awful. I stood there and waited a second more for him to come around. All of a sudden he said “Daddy!” and ran into my arms. You needed a mop to wipe all of the tears from that garage floor. I just held him. He had grown so much. So beautiful. This is what I was fighting for. This is what kept me going. This is why there was no way that I wasn’t going to beat this crap. This was the best welcome home ever!

Next up: No Freakin Way!

I was very weak. The transplant had taken a huge toll on my body. I was no perfect specimen to begin with, not awful though. Before I was diagnosed in May, I had just completed another season of men’s league Ice Hockey and was still refereeing after many years. I loved the game. Playing since I was twelve, officiating since I was seventeen and playing in the Trico men’s league in Bucks County for over 11 years. Hockey was a big part of my life. Getting back on the ice again was a huge goal of mine. Pun intended. In the seven weeks that I had been in my bubble, I went from 185 pounds down to 130. There wasn’t a hair left on my body. So pale, I looked the part…consumate poster boy chemo patient. The trips made to the shower were getting easier though and became a part of my rehab regimen. Still tedious, but so necessary for my mental well being.

The famous blackboard continued to be filled with glorious blocks of positive numbers. So positive that Dr. Dave had great news. ” Looks like you might be going home next week Keenan”. Scary, but welcome news. I was coming along well he said. Plus my numbers were high enough to sustain being outside of the bubble. This meant that my white cell, hemoglobin and platelet counts were conducive to fighting infection and high enough to hopefully allow me a protected release. Dave would let me know the exact date in a few days barring any complications or setbacks. Of course, he reminded me that a parting bone marrow aspiration would be coming. I was actually welcoming it. Believe that?

So, it was time to prepare myself for what was going to be a rough recuperation I was told. So many instructions, visiting nurses, food restrictions, etc. I would be going home with the Hickman Catheter too. Whatever. I was going to be staying with my parents for a while so I wouldnt be around Nick or Lori in the beginning. Joseph was also due to introduce himself to the world in about three weeks. My parent’s home would be another form of isolation but way more comfortable. Plus, in case of emergency, it would be easier to get me to the hospital. I also had an appointment every three days at the hospital for a few weeks after I was home. I wondered why they just didn’t keep me longer? Probably the insurance companies. I couldn’t wait to see Nick though! It had been too long a time since I kissed his head and told him goodbye as he slept, not knowing if I would ever see him again. Buddy, I made it. Next week I’ll be home. Hopefully.

Next Up: What a Welcome Home!