Back in July, the doctors found three tumors in my father’s liver. That turned our lives upside down temporarily, it really shook us up. Through the magnificence an amazing team of doctors at Mt. Sinai, and some very powerful prayers, in December his scans came back that he was tumor free. After three rounds of Chemoembolization (TACE – where a caterer is inserted in the groin area directly to the liver to dispense medication) and during his last round of Chemoembolization, they added a round of Radioembolization. In December he went for a follow up scan and got the a’ok. All was well, no tumors!
We went on a family vacation, J, M, my parents, and I went on the Disney Cruise (yes…again but this time on the Disney Fantasy). It was awesome.
Today was his three month follow up. I just got off the phone with the nurse practitioner of his oncologist. The scan came not what they want to see. The tumor is back and is now in the blood vessel. He is now disqualified for a transplant (they put him on the transplant list right after the found the tumor back in July). Because once in the blood stream, a transplant will not help. They will give him oral medication to take every day: Nexavar 200mg. He will take this once a day for a week and once he works up a tolerance they will increase it to two pills a day at 400mg. The NP told me the side effects which is trivial in the big picture, but freaky nonetheless. He will develop blistering rashes on the soles of his feet and the palms of his hands. So to prevent that, they will give him a cream to apply prior to taking the medication and continue to apply every day. He will see an elevation of his HBP. And because he already has HBP, he has to see his primary to control that first, then continue to monitor. And he will have diarrhea and fatigue. So he is to take some Immodium. I tried so hard to think of important questions to ask but my brain was numb. I just could not get anything to fire and I was just jotting down the info as fast as I could keep up, hoping that I can make sense of the notes afterwards. I did ask her to be honest, at this point, what are we looking at. Will there be a point where he will be cancer free. Her best roundabout answer is, this is not good news. Because it is in the blood vessel, it can travel. Sigh…I don’t know. I’ve never wished harder that I was a medical student that I do now, I wish I understood the full concept and logistics of this. I understand a lot of it, but it’s not enough, I wish I understood completely.
After I got off the phone with the NP, she sent them to see the doctor who will oversee the Rabioembolization.
NOW…because my mom went with my dad, and she understands and speak enough English to get by, when it comes to this – communication is difficult. Luckily, Mt. Sinai is wonderful enough to have bilingual staff. The NP explained what she can to them in Mandarin. Dr. S has an amazing staff and we love Mt. Sinai. Anyhow – I told my mom to have the doctor conference J so he can ask all the right questions, get a better understanding, and then explain it to me. He’s good like that, you can explain quantum physics to him in one sitting and he’ll have it absorbed, written down, and have a list of questions ready for you before you finish your explanation. So he’s my go-to guy when it comes to important stuff. Me, I’m more of a – sit there with my mouth open and scribble “key words” as fast as I can and pray that I will understand it afterwards sorta gal. I’m the OPPOSITE of the go-to person on important information sessions.
J just called me and told me that what the NP told me and what this Dr. F told him is completely different. Dr. F. told him that the tumor is at the entrance of the blood vessel, not necessarily IN the vessel. At this point, we are still going to fight aggressively, we are not at a point where we “make him comfortable”, we are going to fight it. By doing this Radioembolization, plus medication, they are hoping to get rid of the tumor and put him back on the transplant list. Doesn’t that sound more positive than what the NP told me, “this is not good. Radioembolization and Nexavar is not a cure, transplant is a cure and he’s not qualified anymore. This will slow progression, not cure it.”
J asked Dr. F if this was terminal and Dr. F said “No. Right now, it is not.” That’s all I needed to hear.
Deep breath in…hold…and release….
We have a long road ahead of us but we can get through it. We have to get through it, we have no other choice. I feel…scared, a little shattered, worried, but a part of me is ok. We will get through this. I’m just really scared for my dad. I keep saying, God, I’m not ready for this. I know it is inevitable that we lose our parents, but God, please – I’m just not ready. Selfish, huh? I know. So I’m just going through this emotional roller coaster…I’m really scared for my dad. What he must feel right now. How scared he must be.
Last time, when I told others of his health, I was so overwhelmed with love and prayers from everyone that I cried like a baby for hours one day, I broke down when I was alone and just bawled my eyes out. I just felt so blessed and lucky to have some very heart warming, caring people in my life. Some people don’t get many in their lives and I’m blessed with so many. It was my emotions overtaking me, that and my dad was at Mt. Sinai at the time and no one was giving us any answers when he didn’t come back to his room from the procedure for hours (but that’s another story for another time).
Wow, this is the most I’ve written in a very long time. It feels good. In all honesty, I do see a therapist. I’m not ashamed. I was at the start of my sessions, about 2 years ago. But now I’m a proud advocate for talk therapy. Beats Prozac. I’ve done that too and I fought with every ounce of me to get off it…now that I’m off for over a year now…I will do whatever it takes to stay off of it. But seeing Dr. Jeanne once every three weeks helps a whole heap. I think if I didn’t see her, I would go back to locking myself in the closet and crying at the drop of a hat. And writing helps. I just wish I had more time. I will definitely continue to try. I will try.
Peace and love.