Mantle Cell Journey
54 Weeks Ago:
Today this photo popped up on Facebook's Time-hop reminding me that the memory happened one year ago. I didn't need a reminder. I've been thinking about it for the last year. You see, my mom, my dad and I were on our way to Canonsburg, PA for my youngest brother's wedding. My kids were home and my husband would bring them the next day. My mom needed to stop at Sheetz for a restroom break and I convinced my parents that we each needed a snack wrap for the rest of the drive. My mom, Karen, had been insisting that my dad, Bill, be on a diet, as usual. He was glad for the chance at a snack that she would allow him to have. She was so pleased that he was finally losing so much weight that she let him have the snack wrap. We smiled for the camera to remember our little car trip together and placed this moment forever in our memories.
Exhaustion and Hope:
We did the rehearsal and dinner and then went back to my brother's house to grab a few last-minute wedding things before heading over to the hotel. My dad, Bill, was completely wiped out. I looked down at him and was shocked at how old he suddenly looked and how skinny some parts of him seemed. Not at all trying to exploit my dad's dignity, I took a photo with my phone to somehow process the drastic change I saw in this man, really never to be shared...just to mark something in my own mind.
Bill was supposed to have knee surgery a week or so after my brother's wedding. He had bone fragments floating around in there and being a plumber and getting up and down and doing hard labor all of his life was catching up to him. He was also having so much trouble with his back. We all assumed that it was because he was compensating from the pain in his knee and had tried chiropractic care and seeing a doctor for both his knee and his back. Surgery was scheduled. We were hoping for it all to improve after surgery.
The wedding was fun! My two sons were so excited to use their suitcases, to push buttons in an elevator, to be part of a wedding. Other than our youngest having an upset belly the whole night and making multiple trips up to the room throughout the reception, the day went so beautifully and was full of good memories. My little brother was happily married to a kind and gorgeous lady!
Post Wedding Breakfast:
Our family getting together is so rare. That is why this weekend was such a treat. Both of my brothers live about a 3.5 hour drive away from where we grew up. That isn't far, but no one can ever coordinate their schedules. We haven't had Christmas together in years. So, having breakfast together after the wedding was an extra treat. We had lots of fun and took photos together of the cousins and kids with aunts and uncles.
After that wonderful weekend, everything changed.
Life-Changing Surgery Prep
After the wedding, Bill went to the hospital for his surgery prep. When the nurse did his prep, she noticed some things that weren't quite right. His leg was so swollen that the nurse was concerned that he might have a blood clot in his leg, so more tests were ordered. When those scans came back, they noticed crazy lymph node size that just happened to be caught by the scan (no blood clot). So, they ran some blood-work. My dad's white cell counts were abnormal. Further tests were ordered and more scans. Bill had masses nearly everywhere. In his abdomen, a mass about 8.5x11 was in his stomach. Masses were growing in his lungs, which explained why he struggled to breathe sometimes. Then, doctors ordered a biopsy to figure out just what this cancer was. In just a week's time, everything had changed.
There would be no knee surgery for now. They couldn't do it with cancer on the forefront. He would have to wait in pain until the cancer was maybe beaten or until he was himself. That was tough news to hear.
Bill checked in to UPMC Altoona on 9/12 to just do a biopsy. The surgeon could certainly tell that the lymph nodes were abnormal and doctors predicted it was a lymphoma. Doctors also estimated that it would take 6 weeks to actually find out what kind of lymphoma this was. That time frame seemed like an eternity when we waited. I was regularly breaking out into hives and trying to stay calm on the outside.
You see, our good friends' seven-year-old daughter, Maddie, had just been diagnosed with an awful childhood cancer in May. The average survival time for her Diffuse Intrinsic Pontine Glioma was nine months. She was in a trial and had already tried radiation, but her cancer, a brain-stem cancer, was inoperable, and we were already in desperation prayer-mode for her and for her family and for her doctors. We were still in tears daily for Maddie. News about my dad would have been so frightening for our sensitive son and I felt like I needed to hold it all in for awhile.
Sitting, Waiting, Wishing:
Bill, Karen, and I sat, waiting, in that UPMC room. Waiting to hear from doctors, waiting to feel certain about anything again. He took a moment and looked out upon the city of his youth, the city of his work, the city of his fatherhood, the city of his life. That bright-blue-sky September day seemed to tell a different story than what was on the other side of the window. But, my dad looked outward. He didn't get down about this news. I know he thought about it every day. But, he didn't let it take him over. He didn't get super-anxious about what the news would hold.
Bill tried to go back to work and finish up the odd jobs and invoices that he could before whatever was coming came. This was the man that did plumbing work with a cath-bag taped to his leg under his work jeans a few years prior when he had other health issues. Because, when you own your own business and you support your family with that business and everything depends on you doing jobs, you just get up and do the jobs. That's what my dad has always done. So it's what he did now. He was surely exhausted and struggled to put in whole days, but he got up and did as much as he could.
Still, no matter his work ethic, the realization of that cancer allowed him perspective to see how much he couldn't eat because of the masses in his stomach or how much he couldn't breathe because of those masses in his lungs and he needed down-time unlike what he ever needed in life before. And we all prayed and visited and called because dad needed a friend unlike he had ever needed in his life before too.
Mantle Cell Lymphoma Attack Plan A:
It was hard to wait for that news on exactly what type of lymphoma Bill had. When they received the news that he had Mantle Cell Lymphoma, local oncologists said that they would have to do a few more tests before beginning chemotherapy and that it would probably be another few weeks or a month.
My parents got a second opinion at the Mario Lemieux Cancer Center in Pittsburgh. The Hillman Cancer Center had a plan very quickly. Dr. Farah was continually thoughtful and gracious and gave my parents a good feeling that there was hope for him.
Much more quickly, he moved Bill on to chemo. It was a pretty intense mix and along the way, we learned lots about Mantle Cell Lymphoma, which is a non-Hodgkins Lymphoma.
Bill's first round of chemo was called the Nordic Regimen. It consisted of CHOP, ARA-C and rituximab, neulasta Chemotherapy.
CHOP is made up of the drugs. C = Cyclophosphamide. H = Doxorubicin Hydrochloride (also called Adriamycin) O = Vincristine (also called Oncovin). The drug info can also be found here: CHOP.
The plan was that if Bill did well on this chemo treatment they would do a MAXI-CHOP for the other rounds of chemo which is a higher dose. After this treatment he got an injection of Rituximab and Neulasta. And that original plan was that for those shorter treatments, he could do them in our local hospital, but insurance got crazy confused and it was hard to get it covered and my dad had an initial reaction to the first treatment and struggled to breathe. They decided to go the safe route and do all treatments in Pittsburgh.
The other part of the plan was Ara-C - Cytarabine (Ara C, cytosine arabinoside). This treatment would be done in Pittsburgh and required Bill to be in the hospital for three days. The treatment is given over two hours and then 12 hour rest and then another two hour treatment with 12 hour rest. We were originally told that he will likely also require blood transfusions after treatment to get his blood count up.
His first chemo treatment was September 29, 2016.
What to Expect When You're Full of Cancer:
We received lots of advice and rules. Bill cannot be around anyone that is sick because that intense chemo will wipe out his immune system pretty quickly. He also will need to limit being in large crowds for the sake of bacteria and virus exposure. Restaurant food is out for that reason too. Salads were not allowed at all unless everything is well cleaned, but Karen, my mom, quickly decided no salads were even safer. Bill's food would need to be cooked to well done.
If he has a fever above 100.4F he needs to go to the ER. Tylenol and Motrin are not allowed because they could mask a fever. He will loose his hair but it will grow back. He couldn't work. His job, being a plumber, required him to be around crazy bacteria as he repaired sewers or replaced piping.
Stem Cells and More:
A Stem Cell Treatment would be a later step, but wasn't a concern at the beginning. (This is where our local doctors had an entirely different order of treatment and plans and we are so glad that we sought another opinion.) This will be evaluated after treatment progresses. A Stem Cell Treatment is a Bone Marrow Transplant where, ideally, the patient is his or her own donor. This is where they would take his stem cells from his own bone marrow; give him a high dose of chemo and then re-inject his own Stem Cells. This would require a hospital stay of 30 days.
Dr. Farah estimated that Bill would probably start feeling better in a few weeks. He will also be taking flow max to help keep fluids flowing through his body. Dr. Farah was right. After just one or two treatments, my dad could breathe better. There was still a long road but being able to breathe made him rest better and feel better in general.
Treatments went on. My dad got so weak. When he got out of bed, he laid on the couch for the day. But, his doctor was encouraging. He kept telling him that he would be an example to others that this can be beat. That was good to hear. We took turns going out to see him on those longer treatments. Breaking up the monotony was an important part of the process.
My Dad slowly got more and more depressed this past year. He couldn't go anywhere. He couldn't be around anyone really, especially as winter 2016/2017 set in. He even missed his only grand-daughter's first birthday party. I think that must have been the hardest moment. Three hours away, his family was all together, celebrating the first year of life of this little girl and receiving an announcement that she would be a big sister in May and he was alone on a couch in his basement with pre-measured food waiting for him in the fridge. There weren't any groups for him to be part of. He couldn't be around people for risk of being sick. He was too far from physical hospital support groups because he lived hours away from where he received treatment. The internet was out of reach for him in terms of support groups.His wife was constantly bitter that their life had changed so much. I know he felt like he had nowhere to turn. Though I tried to visit, I have two sons that catch every cold virus that comes their way and progresses to croup or broncho-spasms that last for weeks. So, we weren't able to visit very often.
As my dad got closer to the end of the first round of treatments, he was feeling better, but still having night-sweats. We had a bad feeling about what that meant. But, in the meantime, in the middle of January, my mom took my dad to a orthopedic specialist to check in on his knee. You see, he couldn't ever have the surgery he needed because of the chemo he was on. So, for the last year, those bone fragments are still floating around in there bothering him. When he was at the appointment with my mom I was in the hospital with my maternal grandma, Ann, who was having trouble breathing.
On that day, January 19, 2017, I was the only one with my grandma in the hospital when she received the news that she had cancer too. It was in her lungs and spread throughout her throat. Apparently, doctors noticed it when she was last in the hospital six months before struggling to breathe, but nurses had dropped my grandma in transferring beds for her. They forgot to tell her and her family about the cancer in the craziness of the drop and she went home not knowing. On that day that I was with her, I was thankful to be with her - thankful to be the grandchild with her rather than one of her children. I know my mom couldn't have kept it together. I'm not certain that any of her other daughters could have either. Specialist referrals turned to hospice care in just a few days. She passed on January 29, 2017.
Heartache seems to come in waves, does it not?
We all grieved her loss deeply. I think it was uniquely hard for my dad and my uncle, who were both home-bound and didn't get to say good-bye. My mother grieved uniquely. She had been only 13 when her own father died from cancer. I think being so young in a complicated loss made this new loss hard in unexpected ways. Her frustration and bitterness at the situation came out on all of the people closest to her. Did we pray? We tried.
Mantle Cell Lymphoma Attack Plan B:
Bill had a follow-up PET scan on February 20, 2017. That scan revealed that most masses were gone but that the one in his abdomen was unchanged. That meant that we needed a new plan. The Doctor was a little surprised at this, but felt good about his new plan, which involved a drug called Imbruvica, which has some unfortunate side effects that we hoped Bill would not experience. His chemo also became more intense over this time to shrink that mass. We really hoped we would get to the next part of the process- that Stem Cell Transplant.
On April 3 and 4, 2017 I called my dad on the phone and found some of his comments incredibly odd. But, my dad has some crazy phrases that are just part of him, so it is hard to tell when he says something like, "We've got to boil this down to the meat and potatoes" what exactly he is talking about. So, our conversation had bits of "normal" mixed with bits of really unusual phrases. But, on April 4, 2017, he definitely didn't really make sense to me. My brother called and chatted with him and actually called my mom at work to let her know how weird the conversation was. My mom called my dad from work too and thought he sounded strange. They called his doctor to report these symptoms. They waited all evening trying to gauge what was happening. I was at a genealogical society meeting and sitting in my car when my mom was going over everything strange with me. They planned on going to the Pittsburgh hospital in the morning to have Bill checked out.
On April 5, they did some extra scans of my dad. He ended up being admitted to the actual hospital. Over the next few days, he had a few different types of tests. We waited. Waiting can be tough.
On Friday, April 7, my son and I visited his friend Maddie for her eighth birthday to bring her a small gift. She wasn't doing well. There was so much love and heartache wrapped up in everything that week.
That Friday night, after I tucked my boys into bed, I talked to my mom. It was late. She was crying and feeling broken. She had gotten terrible news from a doctor who said that the cancer had spread to my dad's brain. This was unusual for Mantle Cell Lymphoma. It is possible. But unusual. I spent the evening researching what this meant and praying for my dad and praying for Maddie. Doctors told my mom that my dad probably had five weeks left to live. The cancer in his brain was aggressive, it seemed, and he might not remember much soon. We decided to leave the next morning. We packed clothes to stay over and got a last-minute hotel. We wanted the boys to spend a little time with him before he didn't know who they were and was gone. But, on the drive over, my mom called and said that another doctor had another idea for what was going on with my dad and it gave him a little more hope.
Hope and Heartache:
When we arrived at the hospital, we only had a little time there before a doctor came in and explained some things. He was approaching everything not as an oncologist and therefore totally differently than what the other doctors had been thinking.
You see, he looked at those scans and realized that the mass had also shown up on previous scans. My dad had a meningioma there before everything else had begun. He thought that the small, non-cancerous mass, had blood vessels going right through it. He thought it probable that the mass pressed on those blood vessels and that caused a blood clot and that my dad had a stroke. He thought in about three weeks we would see improvement in my dad.
So we had one doctor that thought he would be dead in three weeks and another that thought he would be fine in three weeks. It was such a roller coaster!
I took this photo after we learned that my dad had had a stroke. You can really see the uneven facial structure in this photo, but it was hard to notice when we were talking with him.
Sometimes its hard to get such intelligent specialists together to chat about a patient. But, they did try to do this in Pittsburgh. That and another test result really helped doctors make a conclusion on what was happening with Bill.
A test that they had run that showed a count of cancer cells in the brain had been misread. A number 1 was accidentally read as a number 100. The doctor apologized for this mistake. That difference coupled with other evidence and a stroke exam every time they entered the room pointed doctors to the fact that my dad had had a stroke. (Dr. Farrah wasn't able to weigh in on this whole thing much, because he happened to be out of the country that week!) The doctor explained that the "Artery of Heubner" passed so close to my dad's meningioma that indeed, the pressure from the tumor caused a clot and stroke for my dad. They predicted that his ability to choose words might improve but that some stroke therapy would be in order. They also said that some brain tissue had been injured and he was having trouble retrieving the right information at the right moment, but that time to form new network formations and connections would improve this for him. He would be on asprin for the next few weeks and we would follow up with Dr. Farrah. They suspected that the Imbruvica might be the culprit for the whole affair. They were still waiting on results from an Echocardiogram but anticipated results that would point to their conclusion.
We received other good news that day. The Imbruvica might have been the culprit for the stroke, but it had been really helping my dad's last large mass to shrink.
We stayed over that night, as planned, but with much lighter hearts about my dad than we had expected to have. We let the boys swim the next morning before breakfast and took them on the incline before heading home. The emotional roller coaster of my dad's cancer and stroke was temporarily over.
The heartache? Happy and kind and freshly-eight-years-old Maddie died a few days later - on April 14, 2017. Her life and her death was so significant for our community but also for our family. We will never be the same people again because of Maddie. Our earthly time with Maddie was over. Real heartbreak and loss were just beginning.
Chemo Treatment Turns Outpatient Prodedure:
On May 24, I took my dad to Pittsburgh's Hillman Cancer Center for a chemotherapy treatment. We had a few questions because the Neurologist, Dr. Lieberman, had been recommending a heart monitor for my dad to track his heart and try to catch another stroke earlier should it occur. We assumed this would be one of the regular heart monitors that are given out for these sorts of situations. But, as I sat with my dad and Dr. Farrah that day, they kept saying something about surgery. I was a little thrown off and feeling bad that my mom wasn't there. (She doesn't get very many sick days or family-sick days at work and had just used the last of her days. So, I was happily taking Bill to his treatment and surprised that he would also be an outpatient surgery patient that day!) It turned out that we were all surprised - my parents and myself. After his treatment, they called the Transport service to get us to the correct area in the actual hospital. Pretty quickly, he was checked in and waiting and a little while later, he was taken back for surgery. Apparently, it is much more accurate at collecting information from your heart when its actually under your skin. My dad was on his way to becoming a fully-functioning cyborg! He had ports and devices implanted on both sides of his chest and knew there would be more coming later for his Stem Cell Transplant! I joked a lot that our internet signal might be better with Dad in the room.
This is the photo I sent to my mom before the nurses wheeled my dad back to this unexpected procedure.
New Life Grace:
My brother and his wife that had surprised everyone with the news of their second pregnancy in November welcomed a new baby into the world in May. My dad actually was doing well enough that he got permission from his doctor to go down to Virginia to the hospital and meet his new grandson. We were all really thankful for this moment and for the fact that my dad was doing well enough to go down with my mom and help them out in the first few weeks.
(Sorry Bill's eyes are closed in this photo. I was not the one clicking the shutter here!)
Confusion and Delay:
Bill still struggles with clarity. It might be from the Imbruvica. It might be from the stroke. We aren't sure but still have regular moments of worry when it comes to whether he is having another stroke when we talk to him over the phone.
Just this week (September 12, 2017), he told me a story about my mom getting mad at him for having a snack. He described it, "There were butterflies.....no....I mean pieces of cheese....on the floor that I guess I missed. Well, she got the dogs out about it and the dogs were barking all day." See, the expression about the dogs? Its odd for some people, but makes sense for my dad. Thats why it was so hard to figure out that week that his speech didn't make any sense. But the word 'butterflies' being used instead of the word cheese....that is not my dad's expressions. That is him struggling to have clarity.
How long will this last? We have no idea.
Today: (September 15, 2017)
Today they put a new port in to my dad. There are three "prongs" on this new port and it is one step in prepping him for his Stem Cell Transplant. Its a TriFusion Catheter. Its a Triple Lumen Long-Term Central Venous Catheter. They'll hook him up to a machine. His blood will go out of his body. The machine will pull his stem cells out. Then it returns the blood back to his body. One session takes four hours. You can't be unhooked for any reason in that time period. There is a chance that he could get enough Stem Cells in one session, but it might take two or more.
My dad will also be receiving daily doses of Neupogen. Neupogen increases certain white blood cells called Neutrophils which are important for the body's ability to fight off infection then tricks your bone marrow into over-producing stem cells. The Neupogen shots will be given in the morning - two doses at once. That is today (Friday), Saturday, Sunday and Monday morning. Then, he'll go back Monday afternoon for Mozobil (another bone-marrow-producing injection) at the hospital to produce more stem cells.
One of the side effects is bone pain. Your bones are working really hard to make extra stem cells. Its pretty painful and produces a hystamine. You can take some Claratin with anti-histamines to reduce that pain. Bill's temperature will be taken daily to be sure he doesn't have a fever because of the medicine and the side-effect symptoms.
When you have this port in your body, you can't shower or get it wet at all. So, it might be stinky Bill for awhile. :) I'm kidding of course.
But, this is where we stand today. We are grateful beyond belief that there is hope for tomorrow. Not everyone gets news that can include hope. I'm just praying that through all of the difficult moments, through all of the journey and uncertainty, that hearts are changed for the better.
Today's new port!
I must be up front and explain that this really personal post isn't as typical as my regular posts. I wanted to share this in order for others going through Mantle Cell Lymphoma to have a place to see a story of someone else's journey, especially if they are in the early stages of diagnosis and the moments of the unknown. If you'd like to see a sample of my other posts, check out my previous post titled Senior Stars: Taylor. Telling personal stories is always important to my photography work!
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