Poster Child Turned Problem Child

Okay, so I was getting a little cocky about the whole chemo thing. I was beating the odds. Doing things on chemo that most people only wish they could do. I've continued working like normal, gone snowboarding, shoveled snow, minimal side effects from ABVD, gone into crowds .... All too good to be true? YES!!! My reign as ABVD poster child is over. This past week humbled me as complications emerged and the true collateral damage caused by chemo began to show. This stuff makes hair loss seem like a walk in he park.

I bounced back from chemo on Tuesday like usual. Went back to work. I have been preparing to take some time off from walking dogs by hiring an employee, so I had interviews set up this week. This was something I had been thinking about from the get go because I didn't know if I would be able to work, but when I found I could still work it got pushed to the back burner. I still worried that, being the only one, if I got really sick, I'd be screwed. Yet, that never happened either, so I pushed on status quo. But more recently, I decided that even though I can work, I just want to step back and reflect for awhile and try working on the parts of running a business that I don't get to do when I am "out in the field" all the time.

No sooner was I actively trying to make this change when on Wednesday morning I noticed in the shower that my right arm was awfully pudgy. Good Lord, was I getting that fat, I wondered?! I looked at my other arm for the answer and it was thin. Then I felt my right arm and it was hard. Comparing the two, I noticed my right arm was purple too. It was time to make my first call in to my doctor since I began.

She was worried about a blood clot in the arm or a blockage in my port which happens to be on the right side of my chest, so she ordered an ultrasound and wanted to check function of my port. Totally not what I had planned for my day, so I went to Pen Bay out of convenience. This is probably the last time I give that place the benefit of the doubt that they are just as capable as anyone else. The ultrasound of my arm showed nothing. Then it took three different nurses to access my port just to find it could draw back blood so it was functioning fine. I know they were working off orders from my onc, but no one thought that maybe an actual doctor should look at it and then he or she could better discuss my condition with my onc. Frankly, I'm a little surprised my onc didn't think of that herself. So, they sent me on my way with a puffy, purple arm and no reason why.

Later that night as I undressed for bed, I glanced in the mirror and noticed how easily I could now see the veins in the right side of my chest. My second call into the doctors office in the same day! Because it was after hours I got a different oncologist, the on call doctor. I explained the veins and he said I definitely had an obstruction. Oh joy! Really, joy, I was just relieved to now have a reason. I wouldn't have slept otherwise. He said it most likely had to do with my port because everything was happening on my right, so perhaps I should call Dr. Curtis, the surgeon who implanted me, in the morning. This made so much sense to me.

Dr. Curtis spoke to me directly the next morning. That's twice I talked directly to the doctors! I really like that. I've only ever "talked" to my onc through the nurse. He wanted a CT scan next. Pen Bay could do a CT scan, but I decided to cancel some appointments and make the drive down to Midcoast Hospital. He was there, my onc was there, I thought I'd get more immediate answers this way.

I went by myself because it was just a CT scan after all. I had aced my last CT scan BEFORE chemo. Well, I forgot chemo trashes the veins, so it took four pokes and a change in staff to insert the IV for contrast. I was beginning to freak out in my typical way - uncontrollable shaking. They piled blankets on me, but it wasn't the cold. Anyway, as I was recovering from the CT scan trauma, tears welling in my eyes, Dr. Curtis appeared to take a look at me. He walked right by me at first. I hadn't seen him since I had long hair, good veins, and less acne. I must have looked pathetic to him because he was so nice to me all day. While he was there, the radiologist came in with his cute, bright red bow tie and declared that it wasn't the SVC (large vein). Then the two of them did some geek speak that I strained to follow, but I understood loud and clear when he said he saw a marked difference in the lymph node in my chest. It is no longer abnormal size. So, some good news amongst the catastrophe that was now unfolding. They concurred that I was to get another ultrasound because it just had to be a blockage in one of the smaller veins.

Sure enough they found it and its location right around the entry point of my port's catheter. A vein intervention specialist, Dr. Kommen, came to speak to me about the procedure called angioplasty. Less invasive than surgery, he will use catheters with scopes and snares and snake them through my veins until he reaches the clot. Then he will balloon open the vein at that point. Problem solved, hopefully. If I clot again there, we'll have to think about finding Mr. Port a new home like in my leg or somewhere. He wants the clot to dissolve on its own before next Wednesday, so I am injecting very expensive shots of blood thinner in my belly daily to give my body a chance to break down the clot. The worry being the clot could break off when he balloons the vein and go directly to my lung where it may or may not cause a bigger problem.

A little plead to my port: My beloved port, you have betrayed me and our relationship will never be the same. I still need you for three more months, so what do you say we put aside our differences for the time being and exist in harmony?

So, there you have it. To use the roller coaster metaphor, I had been chugging up with confidence. Now, I've crested and am falling. I was totally in control of chemo, then getting anticipatory nausea I felt a little more out of control for just that day, now I am lost. Indirectly, The Hodge is in control for the first time since I began. But only temporarily. Once we clear this port-clot thing up, I am back in control because I know the lymph nodes are back to normal size. In addition, I had a PET scan Friday morning. That will tell them whether cancer is still active anywhere. Small size is good, but no activity is better, so we'll be looking for the results on Monday.

After my PET scan I experienced another side effect of chemo. I hadn't left the hospital yet when I realized all the signs on the walls were fuzzy. I could focus my eyes to read a word, but then I would lose focus. I told a nurse and she rightfully wouldn't let me leave. Called my onc on this one and she said it was fairly common for folks on my drugs to have just this vision problem. Eye drops might help. Well sitting still and getting food in my system helped. For a PET scan you have to fast. That was a little scary. My mind jumped to the conclusion that my clot had moved, which was going to require another IV for another CT scan. AHHHHHHH! In this case, I was relieved to hear I was just not handling chemo as gracefully as I once was.

Hopefully I didn't bore you with my longest post yet. You are all wonderful listeners! No one interrupted me ;)