More Ups and Downs

For the past week or so, I have had a return of discomfort in my left side and a dry cough. Both of these are usually indicators that something is going on with my lung tumors and were the original symptoms that sent me to my doctor. My PA called today and said that my CEA is indeed up, and that’s a good sign that the tumors are growing – the CEA isn’t necessarily indicative of what’s going on, but it does work that way for me. So I will be scheduled for another CT scan in the next couple of weeks and then maybe meet with my onc doc to see what the new plan is going to be.

I also am having some neuropathy, but in a weird way. It’s only on my left hand, in the area between my 4th and little fingers. It started out feeling like I had a cactus spine stuck in there, but there’s nothing there. And there’s some achiness on the sides of the fingers around that area. I don’t have any tingling, numbness, or any other neuropathy symptoms. I thought it might just be arthritis, but my PA says that the chemo would suppress the inflammation response for arthritis, so she’s sure it’s neuropathy and not arthritis. Lucky me!

Today, the side effects started early with achiness and feeling generally out of sorts and a little weepy. I’m trying to stay busy with searching for and printing knitting and crochet patterns and plan to do some test projects, just to make sure I haven’t forgotten how to knit or crochet. It’s been such a long time since I’ve done either one. And I’m not sure how that’s going to work with the neuropathy; guess I’ll find out.

I’m not feeling very encouraged right now, even though I know most of that is the usual post-chemo depression. It’s always up and down. But at least next week is an off week, so hopefully I’ll have more energy then and won’t have side effects to deal with. It doesn’t help to hear the news that another member of our lung cancer community has died, even if it’s someone I didn’t know personally. Every death leaves another hole in my heart. But on the other hand, there is always news of someone reaching another survival milestone, or of a new drug that is showing promise in clinical trials, or a new treatment that has completed trials and is pending FDA approval. I try to stay positive, because wallowing in self pity doesn’t accomplish anything and just saps my energy. My hope is to keep going until there’s something that will be better than the current chemo regimens I’m going through.

So I’ll continue onwards and upwards.

Rough Week

The week since my last chemo infusion has been rough. It took about 7 or 8 days for my body and brain to feel normal again. I think that was mostly because of the steroids more than the chemo itself.

Friday morning, I woke up so jittery I thought I was going to jump out of my skin. I couldn’t sit still; I couldn’t concentrate or focus on much of anything. The upside of all that was I never had the severe fatigue that usually hits on day 3 and/or 4 after chemo. Although I didn’t have the fatigue, I still had the general malaise and brain fog that usually comes with the fatigue.

By Wednesday of this week, I was feeling better, and by Thursday even better still. So 8 days after the Alimta and all those steroids. In retrospect, I should have insisted that I get stepped down from the steroid push because I know what could happen. I don’t know why my team didn’t bring it up either, and I don’t blame them; I think they were too concerned in getting me through the immediate crisis to worry about afterwards. But since they think I need to up my prophylactic dose of Dexamethasone for next time, I’m going to insist they give me a schedule for tapering off whether I have another reaction or not.

Yesterday and today were the closest to a normal day I’ve had in a while. My hair is growing back and actually is long enough that it looks decent; I’m back to having to use my tweezers on my chin hair; my GI system is good enough to deal with extremely spicy Cajun food.

Life is good.

Weird Side Effects

Yesterday we met with my oncologist to get the results of blood work and the latest CT scan. The good news is that the tumors are stable and not growing or advancing. The not-so-good news is that my liver enzymes and CEA are still trending upwards. The other issues are my shortness of breath periodically – not related to any kind of exertion – and the edema in feet and ankles that is much more pronounced on the left leg along with a strange red, hot, sore, patch on the inside of my leg about half way up from my ankle. This seems to resolve slightly when I am taking the Dexamethasone and then comes back with a vengeance when I’m not taking the Dexa. So now the next step is an echocardiogram, a Holter monitor, and a brain CT w/contrast. I had a hard time with claustrophobia with the brain MRI, so he thinks the CT scan will be good enough. And we will wait 4 weeks before another treatment to give my liver a chance to recover from the chemo effects. And that will hopefully also bring down the CEA level, which he thinks could be because of the increase in liver enzymes. We’ll see.

Since my other blood work was fine, he approved me for the Alimta infusion as usual. We planned on being out by 3 and home by 3:30. Not so! The Alimta had just finished when I developed itching all over my torso, my head, my neck, and my throat. The nurse called my PA, who prescribed IV Benadryl, which stopped the itching for about 15 minutes before it started up again. Then I developed a rash on my neck and torso that itched like crazy. So to make a long story short, I ended up having more IV Benadryl and 3 different steroids IV. I had to wait until 5:30 before they would let me leave. None of the nurses, nor the PA, nor the oncologist, had ever seen a reaction like that itching and rash. Oh, and I forgot the lower back pain, which is a known side effect. The scariest part was the intense itching in my throat and nose – I have never had that before even with my worst allergy/hay fever attacks.

When the PA let me go home, she told me to double my Dexamethasone for last night and today. She said to make sure I had Benadryl on hand and to call 911 if my throat started closing up. Scary stuff! But I made it through the night without any further itching or rash, and had some decent sleep in spite of the jitters from all the steroids. I think I was just exhausted from not sleeping well the night before and the stress of the allergic reaction. She also increased my Dexa for next time to 20mg instead of 4mg before treatment. 

So the saga continues… 

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.

 

Another Holding Pattern

My team leader talked with my oncologist late on Tuesday about my shortness of breath and had me go in for a blood test called D-dimer. Without getting all technical, this blood test shows whether or not there are blood clots in the veins (that’s way over simplified, but good enough for this blog!) Karen thought since my shortness of breath wasn’t related to exertion in any way, it could be blood clots in the lungs.

The test came back higher than normal, though not by a lot, so off I went for another CT scan. Fortunately, the scan showed no clots. There was also no fluid buildup in the lungs or around the heart, no evidence of other inflammation in the lungs, and nothing that showed any reason for the breathing problems. My lungs and heart sound good. I’m glad it isn’t blood clots but wish there was some obvious reason for my symptoms – or maybe not. 🙂

So what we came up with is possible bronchitis from the horrible winds we’ve been having this Spring that are blowing dust, pollen, and other particulates all around and my breathing some of that into my lungs. Since bronchitis doesn’t show up on CT or X-ray, this is just a theory. So back to antibiotics to prevent any more serious lung infection from taking hold and a wait-and-see holding pattern again.

Status Report

The latest blood work shows that my white and red counts are normal and holding steady, which means my immune system is in good shape, and I have the green light for – sushi! Something I have missed so much since I started chemo back in November.

However, my CEA and liver enzymes continue to creep upwards, I’m having shortness of breath without exertion, and a dry hacking cough. The shortness of breath could be the Alimta, it could be allergies, it could by COPD, it could be any number of things. Same thing for the cough. But if they were caused by allergies, there should be a decrease on the days I’m taking the Dexamethasone, and there isn’t. The increase in liver enzymes and CEA could be related and could just be an effect of the chemo. So my next appointment will include another CT scan ahead of schedule. And if the symptoms get worse, I’m to let the team know and they might do the CT scan even sooner.

I’m feeling okay, so I’m thinking there probably isn’t anything going on with the cancer just now, but the symptoms are troubling anyway. I didn’t sleep well at all last night because of the Dexamethasone, and that med upped my pulse and BP today. But my O2 saturation levels are maintaining at around 97%, which is great.

So I’m basically in another holding pattern, but staying positive. And now it’s nap time!

On Death

I was asked the other day if being diagnosed with cancer had changed how I felt about death. And the answer is no. I do wonder what life will be like for my family and friends, but those thoughts have been with me for longer than I knew I had cancer. I can’t answer for everyone, but death is something I think about rarely. I’m comfortable with believing that death isn’t an ending but a beginning, and I know I have lots of living to do yet.  So I’m not ready to leave this world any time soon. Of course, I probably won’t have any control over when I die.

When I was first diagnosed, I was told that lung cancer isn’t curable just manageable. At that point I was certain this cancer would kill me, and I thought Stage 4 lung cancer was always fatal; the question is just when and how long I could keep it under control. I have since learned that it is possible to have no evidence of disease (NED) after treatment. And I know of some who have been NED for years. But there are also those whose treatment doesn’t work and who die early on with the disease. Part of the problem with lung cancer is it often isn’t diagnosed until the late stages when it has already metastasized. And the traditional treatments don’t always work, or they work for a little while then the cancer becomes resistant. There are some exciting new treatments out there that harness the  power of the body’s own immune system and others that target a particular DNA mutation switch – all fascinating. And options for clinical trials that may not have been available when I was diagnosed, which was just in October of last year.

I remember reading “On Death and Dying” by Elisabeth Kubler-Ross as an assigned book for one of my nursing school classes. Of course back then I had no sense of my own mortality. I saw patients die and I saw patients get well and leave the hospital. I cried with the bereaved families and rejoiced with new parents and the families of those who went home. And the five stages of grief stayed with me from all those years ago. Now I find myself going through those same stages – because those stages don’t just occur after someone dies; they can also be a response to a diagnosis such as cancer.

The five stages are denial, anger, bargaining, depression and acceptance. They do not happen in a linear fashion, so people don’t necessarily go from denial to anger then bargaining etc. The stages can occur in any order, and people can even sometimes skip a stage altogether. Some never reach acceptance. I seem to vacillate between anger and depression with a little acceptance thrown in there every once in a while. But mostly I’m fighting and convinced I can beat this, at least for a while, and determined to live my life the way I want to live it – not the life this cancer wants me to live. I never did just ‘go with the flow’; I was always the one fighting the status quo – and I still am.

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 – we packed snacks and sandwiches. But it was scary to see how many people were driving while talking on their cell phones – including 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 – white 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.

Depression

Depression is a strange creature. It can come out of nowhere, take the wind out of my sails, slam into me knocking me off my feet, and then disappear as fast as it appeared. There are days when I don’t want to even get out of bed. Those are the days I’m glad we have the furbabies, because I am responsible for their breakfast while my partner is up on the roof. Then he gives them dinner. I wake up each morning to a little furry body curled closely into mine and another one at my feet. What a wonderful way to wake up!

Today, I had to drag myself out of the house to the gym; the last time I went was a week ago. I knew I would feel better if I went, but the chemo knocked me on my butt last week, and I couldn’t shake the fatigue. I told myself yesterday that I needed to go, but could not overcome the inertia to even get dressed until mid-afternoon. Chemo causes fatigue, and feeling fatigued makes me feel overwhelmed, and that makes me feel depressed.

So today I did go to the gym for the cardio workout class. I felt pooped but energized afterwards – if that makes sense. And I think the last of the fatigue and depression are gone for now, so I expect to feel good for another two weeks.

My oncologist had mentioned on the last visit that he thought I might qualify for a clinical trial up in Phoenix, but then said maybe we should wait for the next CT scan in 3 months. But then on Friday I received a call saying I should set up an appointment to meet with the clinical trial people. So tomorrow we will drive to Phoenix to meet with them. It’s a 90 minute drive give or take depending on the traffic, and all interstate. I’m so glad we have a newish vehicle to go in! So today we topped up the tires, the fluids, and gas, and will embark on a new adventure. I don’t know if I will qualify for the trial, and I really don’t know much about the trial so we both have lots of questions. I hope the trip will be worth it. 

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.