Back to Maintenance

The CT scan I had yesterday shows my tumors are stable with little change from the last scan. We’re quite relieved! The plan now is to try Avastin only but at a slightly higher dose every 3 weeks. I’m happy to no longer have to take Dexamethosone, but I will have to take blood pressure medication (Lisinopril). It’s a trade off, but I’ll take it.

My onc doc and PA want to see how this works before doing molecular testing, which will require another biopsy. And I’m happy to go along with that. The last biopsy caused nausea and vomiting from whatever the drugs were they gave me, so I’m not anxious to repeat that experience. And the four hours of enforced inactivity before they’d let me go home wasn’t easy for me. I wanted to be up and out of there!

So once again onward and upward.

Status check

My CT scan showed no progression of the cancer and there was some regression in the size of one or two tumors while a third seemed to be gone. My liver enzymes were elevated and that is what the oncologist thinks caused the increase in my CEA level. We will continue to monitor CEA as it’s showing an upward trend and do another CT scan in 3 months. If there is progression, he wants another biopsy to test for more mutations (the first one didn’t have enough tissue to do much testing other than to show negative for ROS-1) and try for a clinical trial of immune therapy currently underway in another part of the state. We are relieved at no size increase in the tumors, and for an explanation for the CEA increase. He seems pleased with my progress and sounded encouraging. In the meantime, we’ll continue with the Pemetrexed.

My oxygen saturation levels have been running in the 95-96% range, which is good. Yesterday, the level was 99-100%. I have to attribute this to the exercise I’ve been doing at the gym. It’s encouraging to know that all that sweating and aches and pains are paying off. I haven’t lost any weight, but I haven’t gained any more either. I’m going to keep going to the gym as much as I can and maybe I will lose some of the pounds that have piled on over the past 6 months. The increase in oxygen saturation is an unexpected benefit.

I went to the Dermatologist today for a skin check. If I had known it would be the day after a chemo infusion I probably would have changed the appointment, but I’m glad now it’s done. She didn’t find anything suspicious, but she did burn off a few plaques that were constantly catching on things and bleeding all over everything. As a friend said, it feels like being blow-torched like creme brulee (not sure I’ll ever be able to eat creme brulee again after that analogy!) but at least I don’t have to go back for a year unless something comes up before then.

I’m starting to feel as if I can live normally – at least for a while – and go to the dentist, and have other checkups done that are overdue.

 

Biopsy

I had the biopsy of the tumor in my lung yesterday. Another one of those fasting after midnight things. The process lasted about 45 minutes, though it seemed a lot longer as I was face down on a very hard table in the C-T machine. It didn’t hurt but was very uncomfortable when that needle went in – and it wasn’t a short needle. I’m glad she went in through my back so I couldn’t see the nasty needle. I had IV sedation and local anesthesia, but it was still a weird sensation to feel a needle going into my lung.

As soon as we were done, I started throwing up; probably a reaction to everything that’s happened this week – 3 days in a row of not being able to eat until at least noon or later, and the IV meds, and whatever contrast material they injected into me. So they gave me more IV drugs for the vomiting and wheeled me off to Recovery where thought I could at least have something to drink. But no. I had to sit there for 3 hours to make sure I wasn’t going to have any after-effects like a collapsed lung. And they wouldn’t let me have anything to drink in case they had to whisk me off to surgery for a chest tube if my lung collapsed.

They did a chest x-ray just after 12:30 to make sure there was no bleeding into the lung and that the lung hadn’t collapsed. Then we had to wait another 15 minutes or so for somebody to read it. They finally let us go at 1:15 or so. Steve fixed me breakfast, but I took one look at that and headed off to the bathroom. So I couldn’t eat anything all day. I went to bed around 3 and slept for 2-3 hours at a time until I got up around 6 this morning. I woke up hungry, which is a good sign and have been snacking and guzzling water all day. 3 days of mostly fasting has been really hard on my body, but I’m slowly getting back to normal.

I am still feeling optimistic and hopeful, and I know not to expect a cure, but I’m thinking we can at least manage this cancer and stop it from spreading further, and if we’re lucky, shrink the tumors I already have.

Some good news

The MRI went well today with the IV sedation. No panicking at all, just a little antsy from not being able to move for 45 minutes. The meeting with the doctor went well, too. The MRI showed a ‘normal’ brain (as if anything about me is ‘normal’! LOL) and the PET scan shows only tumors in lungs and liver – nothing in bones, lymph nodes, or anywhere else. We are both feeling quite relieved, to say the least.

The doc also prescribed a new cough medicine – the dry hacking has been horrible and keeps my awake at night and the inhaler wasn’t working quite as well.

I am feeling more optimistic at the moment. Not knowing how extensive the metastasis is has been a major source of anxiety for both of us. Tomorrow I’ll have the biopsy but won’t know the results until we meet with the doc again late on Monday afternoon.

The MRI was at Oro Valley Hospital; neither of us have been there before but were both quite impressed with everyone we met. The architecture inside the building is beautiful and there are niches containing artwork throughout the main areas. Very impressive. The only fly in the ointment today was the sticker shock when I learned the insurance wouldn’t pay for this test because I still have to meet my deductible, which is pretty high. Fortunately, paying that bill won’t break us.

So onward and upward, dear friends!!

Panic attacks

I have never, ever, in my life had a full blown panic attack; but I came very close to it today. I was scheduled for an MRI on the brain (yes, I do have a brain!) I lasted only 5 minutes and had to stop the test. I’m not sure what happened, but I just couldn’t stand it a moment longer. I’ve never had claustrophobia, but then I’ve never been in such a small space like that, either. It was a combination of the machine noises – it’s been described as lying on a freeway with the noise and vibration – or on the end of a runway when planes are taking off and landing over your head – being flat on my back and feeling like I couldn’t breathe (I haven’t slept on my back ever) or maybe this test just made the diagnosis real. Whatever it was, I had to get up and leave. The techs were so supportive and extremely understanding, while I felt like an idiot. I know that others have the same reaction, but I’m a strong person and should have been able to handle this test. I need to start being a little more forgiving of myself.

So now the test has been rescheduled for Thursday, with IV sedation. Tomorrow afternoon I will have a PET scan and Friday I will have the biopsy. We have a meeting with the oncologist on Thursday afternoon; we’re hoping that we can make some decisions even before the biopsy results – at least he should have the MRI and PET scan and the blood work for tumor markers. I’m learning a whole new vocabulary here.

One of my concerns right now is finances. I don’t know how much my insurance will cover and how much we will have to pay ourselves.

And I’m scared. Just scared of the unknown I think. I don’t know what treatment will be like or even if treatment is an option. I don’t know whether the treatment will work or how it will make me feel. I do know that surgery and radiation are not options for me. But perhaps chemo will shrink the tumors enough that one of the other will be an option down the road. Or it could be that nothing will work and I will die before I’m ready.

Most of the time, I don’t think about what’s going on in my body because I’m busy at work or doing things around the house. But I will suddenly find myself tearing up for no reason and even sobbing at my desk. This is hard for me to accept, and even harder for my partner, who is a total control freak. The fact that this is something he can’t fix is wearing on him. He is organizing everything for me and has made friends with the people we need in our corner. So I’m leaving that part to him. I’m focusing on my job and making sure that there are people trained to take care of things if I’m not there. I am learning to prioritize what only I can do and what I can delegate to others. And I have arranged for Family Medical Leave so I can stay home when I need to but still work when I can.

I’m sorry if this seems rambling, but my thoughts aren’t very coherent today.