Conflicted

We spent 2 hours with the oncologist yesterday – so exhausting! What we found out is that I have Stage 4 adenocarcinoma – just the name for the type of cancer. Untreated, life expectancy is 4-6 months at stage 4; with chemo, life expectancy is about a year. However, there are newer treatments coming out soon that can help chemo with reducing the tumors and improve quality of life.

The type of chemo I’ll be getting has a long list of side effects, as most chemo drugs do. One of them is hair loss. The upside to that is it isn’t just hair on the head but all over the body, so it looks like I won’t have to shave my legs for a while! And, a friend of mine is visiting family in Louisiana, so I’ve asked her to look for something fun for me to wear in either LSU or New Orleans Saints colors. Geaux Tigers and Who Dat!!

The rest of the side effects can mostly be controlled with more drugs. I need to get everything organized so I’m ready for Monday when I get my first chemo treatment. I’ve already asked, so I know they won’t let my bring Spud (my mini poodle) with me. I’ll have my Kindle and my phone all charged up and ready to go.

Neither one of us slept well last night. To hear the prognosis was kind of a shock, to put it mildly. So this week, we’re going to be tying up some loose ends so that Steve and the fur babies won’t be left out in the cold when I die. But I’m not planning on living for only a year. The promising therapies nearing approval will greatly extend life, and there are others in the chute.

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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.

And so it begins…

First let me say I’m not writing this for sympathy or for attention; I’m writing this blog so that perhaps I can help someone else on the same journey, and so I can process my own emotions. And Second, this was not easy for me to write. I have been going back and forth about whether I should even publish this; there is no waffling about writing it, just about publishing it.

A few days ago, actually on Thursday, October 17th, at 4:10pm, I learned that I have lung cancer with metastasis to the liver.The following day, we had our first meeting with the oncologist. I learned that because the cancer has metastasized, it’s probably Stage 4, and there is no cure, but with chemo, we can hopefully shrink the tumors and extend my quality of life. I had blood work done and will still need to have a biopsy, a full body PET scan, and an MRI of the brain. Only then can we start chemo.

Looking back, I can see all the little signs I either missed or ignored. And I should never have started smoking and I should have quit sooner. But I can’t waste my energy on woulda-coulda-shoulda.

My doctor was wonderful – holding my hand as she gave me the news. The first thing into my head was how am I going to tell Steve? I knew on a gut level that I had cancer. What I didn’t expect was the metastasis. I made it home in one piece and then fell apart. It seems so unfair that I was looking forward to retirement and now the future is so uncertain.

Friday was a blur. I went to work like always and had to leave for a few hours for our meeting with the oncologist. He is a leading researcher in lung cancer and spent almost an hour with us after being an hour late because he spends as much time with each patient as that patient needs, and I like that. I went back to work but I’m not sure how much I got done because I felt so removed from everything.

There are so many questions, but they can’t be answered until all the tests are complete, and I’m impatient to start the fight. I think I’m still in a state of shock on one level while on another level I’m ready to fight. I know the odds aren’t in my favor – the survival rate for lung cancer is very low – but that is no reason to give in.

I have periods during the day when I’m fine but then the reality will hit again and I just want to scream and cry and hit something. I’m angry that my body has betrayed me; I’m angry at myself for not taking better care of myself; I’m angry that I may not have a chance to enjoy the retirement I dreamed of; I’m angry that my partner may have to go on without me. But I’m also trying to view this as a new learning experience.

I spent Saturday feeling sorry for myself, crying, or napping. I allowed myself one day for self-pity.

So I will continue blogging as long as I’m able, and I will continue my Gratitude Journal daily. That will force me to keep a positive attitude. 🙂

So peace, joy, and love to all. Hug those you love today.