Why Are You PICCing On Me?

Battle scar for getting the chance to live a longer life. Stretch marks scars for giving life to three beautiful children. I wear my scars with pride. 

After leaving the hospital the second time when I got C-DIFF in February 2019, I started the process of recovery. I had to go get lab work done every week. I was doing ok, but then my Alk Phos started rising. Alk Phos is a liver enzyme. On April 5th a MRI was done. Then a liver biopsy was done. The normal range for this lab is 40-120. Towards the end of March, it started rising. On April 12th it was around 1500. 

I had a visit with my doctor on that day. We went over the MRI and biopsy report. At this time he diagnosed me with EBV-PTLD, Posttransplant Lymphoproliferative Disorder. EBV is the Epstein-Barr Virus (Mono). My male donor was positive for this. I was negative. So I developed it from him. 

SIDEBAR

One thing you might not know is when you get on the transplant list, they will talk to you about whether you want to wait for a good organ, or if you will sign a paper saying you will take an organ that has some kind of virus, like HEP-C, EBV and CMV. They will transplant these organs because they have medications to treat the symptoms. If you want that “good” organ, you can be on the waiting list for a lot longer. We did sign the paper. They are supposed to tell you before you go into surgery that the donor has some of those viruses and do you still want to take it. You have to sign a informed consent.  

Then my liver doctor broke the great (NOT) news that I had Non-Hodgkin Lymphoma. NOOOO!  Of course I immediately started crying. Why is all this freaking stuff happening to me. He said that on the MRI they saw a lesion (or tumor, they both mean the same thing) on the right quadrant of my liver. It was 1.9 cm or 3/4 in. 

What is the difference between Hodgkin and Non-Hodgkin Lymphoma?

• Non-Hodgkin lymphoma is more common than Hodgkin lymphoma.
• The majority of non-Hodgkin patients are over the age of 55 when first diagnosed, whereas the median age for diagnosis of Hodgkin lymphoma is 39.
• Non-Hodgkin lymphoma may arise in lymph nodes anywhere in the body, whereas Hodgkin lymphoma typically begins in the upper body, such as the neck, chest or armpits.
• Hodgkin lymphoma is often diagnosed at an early stage and is therefore considered one of the most treatable cancers. Non-Hodgkin lymphoma is typically not diagnosed until it has reached a more advanced stage.

At this time he took me off of my immunosuppression drugs.  We were told that most patients that have chemo after a transplant don’t need them because chemo kills all the cells in the blood that know you have a foreign agent in your body.  He also told us that a percentage of transplant patients will get this. Well aren’t I just the lucky one! 

He said that the Cancer Clinic would be calling me and sent me home. We were home for about a hour when they called and asked if I could go up there right now. Ok. That was fast. I packed my bag and we headed there. I was admitted. It is a crazy feeling to be told you have cancer and get admitted the same day. Your head is spinning. 

The next morning we met with the Oncologist. She came in with a bunch of paperwork because the liver doctor told her that Brent researches everything. (he once told Brent that he asks more questions than medical students, and a lot better questions at that). Well, Brent cares about me and will look for all answers to his questions. 

She said they were going to start me on Rituxan, one of the chemo drugs. She was hoping that this one drug would work by itself, but I would have a PET scan done after two doses to see how it was looking. Before I would get the drug, I was sent to get a PICC line put in. 

A PICC line is a thin, soft, long catheter that is inserted into a vein in your arm, leg or neck. The catheter is positioned in a large vein that carries blood into the heart. This is done with the help of an ultrasound. The Tech started with my right arm. She kept looking at the ultrasound. Apparently I have weird veins. The catheter would get to a place where there shouldn’t be a valve opening.  Oh no. What have we here. A valve that is opening and closing. It would block off and crimp the line. (A small percentage thing). She pulls it out and moves to my left arm. Yes another poke. Errrr. The left vein doesn’t have that problem. She gets it to my heart and then waits for the machine to say everything is working the way it should. She then stitches the piece you see in the first picture that is under the clear piece. The stitch’s (2) holds it in place on your arm so it doesn’t move. 

At least with a PICC line you don’t have to get poked every time. Even your labs are drawn from them. Phew. They have to be cleaned around the injection site every week so it’s lots of trips to the hospital. 

I was released from the cancer floor three days later. But there was a lot that went on during those three days. 

What were they?  You’ll have to wait till the next chapter. Hehe