Relief

Yesterday was blood work and treatment day. My white and red cell counts are good and holding steady, and blood chemistries, platelets, and everything else is good, too. So I had my 2nd dose of maintenance Pemetrexed. One thing that the nurses pointed out was my red cheeks and neck, which evidently is a side effect from the steroids I’m having to take the day before, day of, and day after my treatment. I was anxious about the CEA level as it was starting to inch up a bit the last time we checked it. But the result wasn’t available until this morning. My PA called to let me know it had gone from 25.1 to 20 – I could have hugged her over the phone!

I can’t begin to tell you how relieved my partner and I are about this reduction. I was really nervous about it, especially since I’ve developed a dry cough and am having to use the Ventolin again. I’m thinking, and my PA concurred, that it’s probably allergies. March here in the desert is usually windy, and this March is no different. We had sustained 15-20 mph winds on Sunday with heavier gusts, and it’s been breezy ever since. The pollen count is in the extreme range, and will stay that way for a while. So I’m optimistic it’s just allergies. My lungs sound clear with no dead spots, no wheezing, just normal breath sounds. And that’s another relief because the primary tumor had caused lung collapse in the left upper lobe that has since re-inflated.

Now because the CEA is going down, and if it continues to go down or remain stable, I won’t need to have the PET/CT scan until after another 2 or 3 treatments – another relief. And I’m glad I picked the Medicare plan I did, because there are no co-pays and no deductibles; those were adding up a lot on my old insurance.

So today is all good news. And my rose bushes are budding like crazy!

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CT Scan

We spent about 4 hours at the doctor’s office today for first blood work, then a CT scan, then a meeting with my oncologist. The scan looks good. There was no change in the size of the  primary tumor in my left lung, but he thought it might be scar tissue given that the secondary tumors, the largest of which is in the liver, did shrink. And, my left upper lobe has re-inflated; it had shown as collapsed on the previous scans.

So what does this mean? It means I begin maintenance therapy tomorrow with Pemetrexed. This had been part of my first chemo series along with Cisplatin, but my side effects were so severe that they switched me to Carboplatin and Paclitaxel. I have had a total of 4 rounds of chemo. My oncologist seems quite optimistic that the Pemetrexed will keep the tumors in check and may even reduce them further. And he thinks that the  severe side effects were from the Cisplatin and not from the Pemetrexed. The down side is that I will be back on higher doses of Dexamethasone, which makes me jittery and unable to sleep. But if I only have to take it for 3 days out of every 21, I’m not going to complain!

I will have another PET/CT scan in 6-9 weeks, depending on the CEA levels (tumor markers). If the CEA continues to go down or stays the same, we will wait 9 weeks; but if the CEA starts going up, we will do it sooner. Here’s hoping for 9 weeks!

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.