Bump in the Road

My visit to the oncologist on Tuesday was a disappointment. My white count had tanked and my blood pressure was way high, so chemo is postponed for two weeks. I thought the high blood pressure was because of the Dexamethasone – it’s always high on infusion days – but my PA and the oncologist thought it was the Avastin. So I’m now checking my blood pressure a couple of times a day, and today it was back to my normal. I did get a shot of Neupogen to help with the white blood cell count, so by the time I have my next blood work (a week from Friday), the count should be back to normal and I should be able to get back on schedule for chemo the following Tuesday.

I have mixed feelings about the delay. I welcome the relief from side effects for a couple of weeks, but I’m also afraid that the tumors will grow during that time. Maybe that fear is irrational; I don’t know. I can’t control what’s going to happen, so I just have to trust that it won’t be too bad. In the meantime, I hope to use the extra energy I will have to take care of some of the things on my to-do-when-I-retire list, which seems to grow every day while very little gets crossed off.

Where there’s life, there’s hope. ūüėÄ

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Death is Personal

Every time I read of someone in my extended cancer family dying, I take it personally. And it hurts whether I knew them or not. So many of them I met through the blogosphere or Facebook and have not met in person. But I still feel I know them, and we support each other in our fight for freedom. And each death reminds me of my own mortality.

I know that each person with lung cancer is different and will respond differently to different drugs. And I know what the statistics show. I try not to focus on statistics, but it’s hard not to. I instead try to focus on the survivors who have beat the odds – those who have survived 5,10 years or more – and those living with NED (No Evidence of Disease). Lung cancer isn’t curable; I know that. But I want to know why isn’t it? What is it about this disease that makes it so aggressive and so incurable?

I read scientific studies; I read clinical trial results hoping for the breakthrough treatment that will knock lung cancer on its ass. I also read stories of ‘cures’ if I will only buy whatever the supplement or diet du jour is. And I get angry at the people that are touting these ‘cures’ and giving false hope to people living with lung cancer and desperate for a cure when there isn’t one. I have to admit that every time I see a new ‘cure’, I do a search¬†for any scientific studies on whatever ‘it’ is; most of the time there are none. But once in a while, there are promising studies, and then they don’t seem to go anywhere. And I wonder why. What happened that the research didn’t continue when the early results showed such promise. Did funding run out?¬†Was there a catastrophe with the research itself?

There is no lack of conspiracy theories to explain why we have no cure today. Many of these theories claim there is a cure, but the Government, or the drug companies, or someone out there, has decided they want people to die, or they can’t make money from the ‘cure’, or so many other ridiculous reasons.

Lung cancer can become resistant to the chemotherapeutic agents used as first line treatment. And even to the second line treatment. The most encouraging research now seems to be targeted therapy and immunotherapy. Targeted therapy is for a specific mutation, and immunotherapy is a way to trick the body’s immune system into attacking the cancer cells, and only the cancer cells. This is different than chemo where all fast growing cells are attacked, which is why there are GI side effects, and loss of hair, etc. But even these aren’t cures, and lung cancer can develop immunity to the treatment.

So for now I will just keep going.¬†I will have blood work and another CT scan on Tuesday and will meet with my oncologist on Wednesday. And then we’ll see where we go from here. In the meantime, I will continue living with an attitude of gratitude as much as possible.

 

Tiring Day

Yesterday was sort of an adventure. We drove to Scottsdale, about a 2 hour drive, to meet with the oncologist running a clinical trial of¬†a lung cancer treatment. From here to there is all Interstate¬†and there are¬†a few areas where blowing dust is a concern when there are high winds, and yesterday was quite windy. If you don’t know about blowing dust in these parts, Google Haboob Arizona and look at the pictures or videos – that will show you what it looks like. So we left early to give us enough time that we wouldn’t be late for the appointment, which was at 1pm. We have cruise control in our vehicle, which Steve had never used before, so he was like a little kid with a new toy! Cruise can be useful on the Interstate by keeping the speed constant and conserving fuel.

The drive was uneventful, with one stop for lunch Рwe packed snacks and sandwiches. But it was scary to see how many people were driving while talking on their cell phones Рincluding big rig drivers. A couple of the big rigs kept drifting into our lane, so we were quite happy to get past them. And of course there were all those people driving way faster than the speed limit. The worst part was driving on the loop roads around Phoenix; so much traffic going well over the speed limit and changing lanes with no warning and weaving in and out of the other cars on the road Рwhite knuckle driving at its best!

The staff at the oncology office were pleasant. The oncologist we met with was probably younger than my kids – not necessarily a bad thing but weird all the same. He explained the trial, asked me a bunch of questions, gave me the once over, and said he didn’t think I qualified for this trial. From my medical records, he said he saw that my tumors had shrunk, even if it was just a small amount, and he thought the regimen I’m on now is keeping things in check. This particular trial is for people who have been on the platinum-based chemo therapy, but whose cancer has progressed. And he thought that waiting and doing the CT scans every 2-3 months was the thing to do. If nothing else, he confirmed that my disease is under control at the moment, and that we are doing the right treatment for now. He also said that the CEA levels didn’t necessarily reflect what was going on with the cancer. I’m sorry I didn’t qualify for the trial in one respect, but having a second opinion was helpful.

The drive home was also uneventful – we didn’t get inundated with dust storms and we didn’t get blown off the road. By the time we pulled into our driveway, I was exhausted! The dogs were so happy to see us – we¬†were¬†gone for 6 hours but they acted like we’d been gone for days! They ran circles around us and each other; ran in and out the doggie door yipping and whining and barking. It was quite the greeting! Then they spent about 10 minutes chasing each other around the back yard. They are such goofballs! So they had their dinner, and we had ours, and it was an early night for both of us.

A New Normal?

I have been feeling off¬†for the last couple of days; I just could not stay awake so took lots of naps. And I’ve been a little loopy; dropping things, unsteady, hungry all the time, upset GI system. Then it dawned on me – it’s the chemo stupid!! Since I have chemo only every 3 weeks now, I feel so good most of the time that when I don’t feel good, I forget what’s causing it. One of the side effects of the Pemetrexed (Alimta) I’m getting is severe fatigue, so yeah, I felt like I had to sleep a lot. Combine that with the GI symptoms (and I won’t go into details on that one!), and yeah, I’m going to feel crappy for a day or two. I should have it figured out by now that by the end of Friday of the week I get my infusion, I’m going to feel like crap. Now I have it figured out – until the next time.

The scheduler at my oncologist’s office called me Friday to set up a CT scan for my next visit, and to assure me that my PA had talked to my oncologist and they knew I was concerned¬†about the increase in the CEA level, and that’s why they scheduled another CT scan to get a sense of what’s going on. I will meet with the oncologist right after the CT scan so there won’t be a wait before getting the results. I will also have my CEA level checked the Friday before my Tuesday appointment so we can discuss that at the appointment, too, and not have to wait until a day or two later to get the results. I wish there were a faster, better way to see what’s going on without having to wait to have tests, and then having to wait to get the results. I find the further into this journey I get, the more impatient i get.¬†

I also think I need to stop researching clinical trials and treatments. I normally like to be prepared, but I think I’m overloading myself and confusing myself about the options available. So I think I need to take a break for a while. And I need to get back to focusing on my writing; I have sorely neglected my stories for quite a while. What brought this home to me is a couple of new followers on my fiction blog; I haven’t added anything to it in over a year. Time to get in gear and write!

 

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!

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.

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.