Rich208's Journey with Mantle Cell Lymphoma

Patient: Non-Hodgkin Lymphoma (NHL) > B-Cell Lymphoma > Mantle Cell Lymphoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: about 5 years ago, Male, Age: 57

  1. 1
    • Rich208
    • Experience with Mantle Cell Lymphoma
    about 5 years ago
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    Diagnosed

    Oh No

    My tumor started growing on the upper right side of my mouth in March of 2011. For months I didn't address this issue even though my weight was steadily decreasing to an unhealthy 151 lbs. I was going through a divorce, looking for employment and not eating at all. The tumor eventually grew large enough to block 90% of my airway covering both the hard and soft pallet. My thought was to "make it through the holidays" (Thanksgiving and Christmas) since my young children were with me full time and deserved a great Christmas and then have myself looked at. Deep down inside, I was worried that my condition was cancer but I shrugged this feeling off the best I could until finally on December 15, 2011 I woke up unable to breathe very well. I resolved to myself at that moment to get to the doctor's office as soon as the children were off to school. So, at approximately 9:30 am on the morning of December 15th, I drove to my doctors office and requested help. As soon as my doctors P.A. seen the tumor, a look of horror crossed her face. I knew then that what I suspected was true. Whatever the growth was certainly was serious enough to warrant that look. My breathing was still giving me problems especially when attempting to get a deep breath. Frustrating and overwhelming at the same time. I wanted air! The P.A. left for a few moments as I sat on the stool trying to get a decent breath in my lungs when she returned with another lady. Erin, the P.A. asked me to open my mouth so she could show this new person exactly what she had seen moments before. This new lady didn't have a look of concern on her face, simply what I would call a "hmmm" look. She didn't blink an eye, nothing so I thought well, maybe this isn't what I thought. Perhaps my mind got the best of me and there is a reasonable explanation for the growth. WRONG! I notice the time on the wall said 10:45 and knew I had to pick my 6 year old daughter up from her morning kindergarten class at 11:15 so I asked if the appointment would last much longer and Erin asked me why. I told her and she said that she preferred I didn't leave but if I promised to return as soon as possible there was nothing she could do. Well of course that alarmed me. I told Erin that I promised I'd return as soon as I could, put my coat on and left. During the short drive to my daughters school, my mind was racing. What was this in my mouth? This growth certainly alarmed this person and that alarmed me. Maybe I should have taken my weight loss, the bleeding of my mouth, the complete hearing loss in my right ear and my inability to breath more serious after all. Initially, my condition was thought to be an impacted wisdom tooth as told to me by a local emergency room doctor in early October 2011. Obviously that wasn't the correct diagnosis. I dropped my daughter off at home with my oldest daughter Holly and returned to the doctors office much to the delight of the entire office personnel. From the moment I walked into the lobby I could tell that my return was anticipated and welcomed. I was directed back to the same room I occupied just a short time before and Erin immediately came in to tell me that she had made an appointment for me at Saint Alphonsus hospital for 1pm that afternoon which was only an hour and fifteen minutes away. I finally asked Erin if the "growth" was serious she offered this explanation. "Your airway is obstructed to a large degree, your weight loss is significant and we would like another doctor to look at you". I said, alright and at 1pm promptly, I met Dr. Garner who examined me thoroughly and said he thought my "growth" may indeed be cancer. I surprised myself by saying, "I thought so" and asked Dr. Garner what he thought the next step would be. He stated, "I want you to see Dr.Schmidt (ear, nose and throat specialist) tomorrow". The very next day, I found myself in Dr. Schmidt's office at the appointed time. Upon first meeting him I was struck by his demeanor. He is very personable to say the least. He asked me to sit and proceeded to examine my mouth, ears and nose as well as my Lymph nodes which were gigantic! The right jaw area Lymph nodes were indeed massive and had been for quite sometime. After the examination, I asked the doctor what he thought and without missing a beat he said, "you have cancer." I surprised myself again and said, "ok" in the calmest way. My oldest daughter who is 20 started crying and I found myself comforting her saying it'll be ok over and over. She was devastated but I was calm and accepting of the news. Even today I understand the implications of my diagnosis and what it means to me, my family and friends. I wasn't scared then nor am I today as I write this. Anyway, Dr. Schmidt explained to me the procedure for taking a biopsy of the "growth" and within moments he was taking the sample. I didn't feel a thing and am still surprised at the whole thing being so non-invasive. The next thing I heard following the biopsy was, "ok, we would like you to see Doctor Schultheiss over at the Cancer Institute." I said ok, and left the office. My appointment was with Dr. Karl Schultheiss at the Cancer Institute at 2pm on December 22, 2011. After introducing himself and meeting his terric P.A. "Laurie", he proceeded with the examination and told me that I did indeed have cancer. He had already looked at the biopsy test results and said, "you have B-Cell Lymphoma and I believe it is Mantle Cell Lymphoma but cannot be 100% certain until we get a bone marrow biopsy." He asked me what my plans were for the evening and I told him and Laurie that my plans included going home, having dinner and spending time with my children as I try to do every night. Laurie said, "we'd like you to stay in the hospital overnight so Dr. Schultheiss can perform a bone marrow biopsy first thing in the morning." This is when I started crying. For the first time, my condition caught up to me mentally. I wasn't crying for myself but for my youngest children who are 6 and 10 years old. I hadn't been away overnight from either of them in years and it being so close to Christmas, I still hadn't finished the Christmas shopping! At this point, I was still having a tough time getting oxygen, my clothes were literally hanging off of what used to be a healthy frame but also realized I needed to get better and one night wasn't going to kill me and that I could get over not tucking the children in for one night if I wanted to tuck them in for years to come. I extended my right hand to Dr. Schultheiss and said, "I'll make you a deal, I'll check in to St. Al's for the night if you'll promise me that after the biopsy and the first round of Chemo, I can go home. I want to spend the Christmas weekend at home with the children and have to finish shopping." Dr. Schultheiss extended his hand and said, "you've got a deal." The next thing I knew I was in my hospital room laying in bed and watching TV. My daughter was right by my side. I think at this point she accepted the diagnosis and was able to cope with the situation much better. My night in the hospital was rough. I woke up every half hour trying to breath and found it hard to sleep out of fear that I would suffocate. The staff at St. Al's were terrific. I couldn't have asked for a more attentive group of nurses to help me make it through that night. There were so many nurses and attending staff that I soon found myself forgetting their individual names and realized a numbering system would be a better way of remembering just who they are so I numbered each of them until I came to the final number of 7! Number 1 and number 5 were my favorites. They checked in on me every 15 minutes or so and always made me laugh which is something I've always enjoyed. The next morning, December 23rd, Dr. Schultheiss arrived right on time, explained the bone marrow procedure and we were off and running! I must say that the only "pain" I felt was the pressure exerted by the good doctor but it wasn't really painful if that makes sense. It was more like a real deep pressure on the lower back but Dr. Schultheiss was terrific and soon the procedure was over. The next step was the insertion of a PICC which scared the XXX out of me. I was scared because I didn't know anything about what it entailed and certainly didn't want something staying in me for any length of time but soon I realized that this step was needed if I wanted to live and be a good father to my children. I needed to "step-up" and get it done. Initially, Dr. Schultheiss said that "they" were coming to get me at about 10am however, it wasn't until just after 4pm "they" arrived. The whole procedure only took 3 or 4 minutes and once again was surprised at not feeling any pain. It was from that point on I was determined to let the staff do as they please with regards to my health and stop worrying about pain, real or imagined. Within 20 minutes of having the PICC installed, my first round of Chemo began. The entire procedure was explained to me in the most logical way. I listened intently to every word and soon felt at ease with the whole thing. My daughter put in a DVD of Peter Sellers' "Revenge of the Pink Panther" and I began my journey. As it happens, I managed to sleep thru the last bag and soon found myself be awoken to my daughters voice saying, dad, "it's time to wake up, you're done. It was 10:40pm and I woke up feeling about the same as when we started. I remember hearing the nurse (number 5) say, "wow, I never seen anyone sleep through this!" I remember laughing and asking someone to get my coat, I was going home!!!!!

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  2. 2
    • Rich208
    • Experience with Mantle Cell Lymphoma
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    This person has yet to add any details about this experience.

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
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  3. 3
    • Rich208
    • Experience with Mantle Cell Lymphoma
    about 5 years ago
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    Fatigue (tiredness)

    Side Effects

    My fatigue is constant. I'm almost always tired but still manage to work (although this is becoming harder and harder) and be a good father to my children. Had a rough weekend, tired and in a bit of pain. Today seems a little better, I'm not as tired and the internal pain has subsided.

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  4. 4
    • Rich208
    • Experience with Mantle Cell Lymphoma
    about 5 years ago
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    Confusion

    Side Effects

    I get confused at times but understand that this is a common side effect. My hair is almost gone now but I was never vain. I actually look forward to being bald! I must say I wear a hat everywhere though, I have the "Cancer Look". Patches of hair still remain and my beard is almost entirely gone now.

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  5. 5
    • Rich208
    • Experience with Mantle Cell Lymphoma
    about 5 years ago
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    Weight loss

    Side Effects

    Before my diagnosis, I went from 242 lbs. down to a low of 151 lbs. Today, I weigh in at a healthier 171 lbs! I just weighed my self and I've gained another 3 lbs.!

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