Checking In

With 7 treatments done and only 3 left to go, I thought this might be a good time to evaluate where I am and what’s happening. There is, of course, extreme fatigue from the whole brain radiation. It comes and goes and isn’t constant, so that could be a plus I suppose. Although if it were constant I could at least plan a little better. The headache is no longer – and that’s a relief, not so much because of the lack of pain, but because it means the brain swelling is going down or is gone. I’m down to one steroid pill a day from 4 a day at the start and that is great news.

There is now a rather red area on the back of my neck in line with the 6th cervical spine, which is where the targeted radiation is being focused to deal with the metastatic tumor inside the spinal column. The pressure on the left ulnar nerve must be lessening because I’m able to mostly use my left hand without any problem, except for my fingers stumbling over themselves when I’m typing sometimes. But i’ve noticed that as long as I keep a steady pace and don’t race, I do okay.

I’ve also had somewhat of a dry throat. It’s not sore exactly, just dry and croaky. And the inside of my right cheek and on the gums seems to develop transient sores and bumps. Nothing intolerable to this point, so all I can do is check it out daily to see if it’s better, worse, or the same.

There are a couple of things I find interesting, though. I don’t have much cognitive deficit at the moment; my brain does feel full of cotton balls at times. The worst thing I’ve noticed for the last 2 or 3 days is an intense craving for salt. I’ve always liked salty foods – like my inclination to eat anchovies straight from the jar – but this is so much more intense. I’m trying to pace my salt intake with plenty of fluids but today we ran out of sea salt and I had to resort to cayenne pepper to soothe the craving. This is quite weird. I’m not sure of the mechanism that’s causing the salt craving, but I’ll research as I’m able. And then there’s the “listing to port” when I walk (or is it starboard? whatever, I’m a little lopsided!) That comes and goes, too. Now I know that some of these effects will go away, some won’t, and some might appear that haven’t yet – that’s the nature of whole brain radiation. All I can do right now is compensate as best I can, and stay vigilant to see what comes, what goes, and what stays the same.

Onward and upward.

What an Ordeal!

I had my planning session with the radiology oncologist today in preparation for getting radiation starting tomorrow. As usual, it’s a mixture of good and bad news. The tumor pressing on my left ulnar nerve (the one that runs down the outside of the arm that’s been causing problems with my little and ring fingers) is actually inside the spinal column and not just in the bone. Apparently that is very unusual – anyone surprised at that? I’m definitely not!! And the lesions in my brain are more than 4 – that’s what they meant when they said too many to count because if there’s more than 4 it’s whole brain radiation instead of focused. They will be able to focus specifically on the C-6 spinal tumor – so that’s a good thing.

Today they fitted me with the mask. It’s a mesh that is warmed and pressed down to conform to my face, then fixed to the table so I can’t move. They also tied my hands to a long tether around my feet to pull down my shoulders and keep them still. Then I was moved in and out of the CT scanner a few times and the mask marked so they know where to aim. My claustrophobia kicked in wearing the mask, so I’ll be taking my relaxer before I go for treatments. They also marked my chest with a little tattoo – not the tattoo I wanted – for placement purposes.

I will have 10 radiation treatments – that’s every weekday for 10 days for 10-15 minutes strapped down on the table. Happy happy joy joy! By the time I was done today, my wrists and shoulders were sore and aching. Thank goodness for drugs!

I still have the imprint of the mesh on my face and a couple of marks on my wrists from the restraints. At least it’s only 10 treatments this time. Then we re-evaluate. Now they just called me to come back for another scan of my C-spine, which evidently didn’t turn out quite right the two times they did it this morning. Hopefully I won’t have to put the mask on again, but if I do, I’m prepared as I took my Ativan as soon as I got home.

The side effects include hair loss (just as it was starting to grow in again!), nausea, and some others that I have written down. There are some less common ones that I expect to have eventually – I’m getting used to being an outlier though I don’t necessarily like it.

So I will endure this as it means hope. Onward and Upward!!

Wishes

Star light, star bright,
The first star that I see tonight,
I wish I may, I wish I might,
Have the wish I wish tonight.

For some reason, this little nursery rhyme jumped into my head as I sat down to write this blog post. Perhaps because I decided to write about wishes. Or maybe because we had just been outside with the dogs.

I am participating in National Novel Writing Month (NaNoWriMo for those who don’t know) after having to skip last year because I was diagnosed with cancer in October and spent November in a whirlwind of tests and chemo and its side effects. I only mention this because I am having to type during those small windows of time when I’m not hurting. For the last couple of weeks, my left hand has been hurting, itching, and numbish. It started with a prickling sensation in the webbing between the little and ring fingers, as if there was a cactus spine stuck there. That progressed to itching and pain. I can’t scratch the itching because that causes intense pain. And then there’s the vague numb sensation in those two fingers and half of the middle finger. Then there was the pain in the elbow and next to the shoulder blade on the left side. And if I’m holding something in my left hand, half of the fingers start trembling. So I’ve decided it must be a pinched nerve in my neck from sleeping in weird positions to try to stay as upright as possible to defuse the acid reflux.

And then my right big toe went numb along with part of that foot. That’s the toe that I ripped the nail off a few weeks ago, so that freaked me out, too. I have no idea what’s causing that.

When I called my team, my PA’s first question was am I having headaches, which I am not. So she talked to the onc doc who wants an MRI of the brain and cervical spine. And on top of everything else, now I have no energy and can’t seem to pull myself out of this ‘slough of despond’ I’ve fallen in to. By 2 or 3 in the afternoon, I have to take a nap. I have no energy. I can’t sit and type for any length of time. And forget crocheting. I’m right handed, but my left hand is just as important for crocheting or knitting. I had only recently rediscovered the joys of knitting and crocheting, and I can’t even do that now. I’m taking ibuprofen several times a day hoping that will reduce the inflammation and the pain, which it does, but not enough to be able to sit and compose on my novel. Since I can’t write, knit, or crochet, no wonder I’m feeling depressed!

I’m scheduled for an MRI on Monday afternoon and will meet with my PA on Tuesday morning, and I’m scared of what the MRI might show. I know I can’t change it be worrying, but I’m still afraid that there could be metastasis to the brain or spine. But it could just be a pinched nerve. I’ve had that before, but it’s never been this bad or lasted this long. I can only wait now, and nap, and keep taking ibuprofen, and hope that whatever the problem is with my hand it will be resolved before the end of the month so I can complete my 50,000 word novel.

So what does this have to do with wishes? I wish I didn’t have this problem with my hand and my foot; I wish I didn’t have to worry about the MRI and metastases; I wish I wasn’t depressed. The wish list is almost endless. But as my mom used to say, if wishes were horses then beggars would ride. I can’t make wishes come true, but i can be patient.

Onward and upward.

A Delicate Balance

It’s a delicate balance, this living with lung cancer; between life and death, between treatment and quality of life, between disease and health.

It’s been said that we begin dying as we take our first breath, and we don’t know the hour or manner of our death. There is currently no cure for lung cancer. The best I can hope for is some time with NED (No Evidence of Disease), or at least no progression in the growth of the tumors in my lungs, lymph nodes, and liver, and no further metastasis. This disease may kill me, or not. I could die from something totally unrelated to lung cancer – getting hit by a meteor for example – or I could die from complications from the disease or from the treatment itself. Life is what we make it, and death comes to us all.

Quality of life will be different for each person. For me, it means having more good days than bad. It is having fewer days suffering the side effects than not. My new regimen has given me two bad days so far. Today is not bad at all, and the first day after treatment was good, so I’m batting better than .500 at the moment. And I won’t have another treatment for 2 1/2 weeks. So it’s looking good. Each person has to decide for herself what quality of life is acceptable and for how long. If I reach the point that I have more bad days than good, then my quality of life is suffering, and it will be time to reassess treatment vs. hospice care. But until that day comes, I intend to live my life as fully as I can.

Health is something I always took for granted, in spite of my bad habits in my younger days. I think we all feel invulnerable when we are young. We don’t think about unsafe behaviors, about dying, about chronic illness, about aging. We think we will live forever, even though in some part of our brain we know we won’t. Disease is an uncomfortable fact of life for many of us as we age. We are living longer these days, so more of us are suffering illnesses like diabetes, and high blood pressure, and heart disease, and various cancers. The pressures we live under for most of our lives has an effect on our health unless we learn to decompress at an early age. I didn’t know I was under so much pressure until I started seriously looking at my life and what I wanted it to be (somewhere back in my 40s – better late than never!).

So once again onward and upward. I will try to keep this delicate balance for as long as I can.

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.

Cancerversary

What a roller coaster ride this past year has been! This time last year I was sitting in my primary care doctor’s office waiting for the results of my chest x-ray and CT scan, knowing in my heart it was cancer, just not the extent of it. I remember driving home and wondering how I was going to tell my partner. The very next day, I met my oncologist. Then came a whirlwind of tests and appointments to discuss the findings, and then my first chemo treatment, which was not kind to me. And I don’t know how many chemo treatments since then. And somehow, I continued working; sometimes just a couple of hours a day. But I mostly used that time to train so that someone would be able to take over my duties, and that allowed me to retire in February.

The time since then has been sometimes a blur and sometimes has had too much clarity. But I have made it to the one year mark; many don’t. I have lost count of how many cycles of chemo I have had, and how many times I have cried, and how many times there were little victories. What has kept me going through all of this is a positive attitude, and my support system of sister-friends, family, and people who don’t even know me who have taken up my cause in their churches and prayer circles. I am so thankful for all of you.

Oh, and I almost forgot; today is Day 1,000 of my Gratitude Journal Blog – how cool is that?

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.

Day from Hell

Yesterday went so well with chemo. My blood counts were good; my other blood work was incredibly normal; and my CEA is continuing it’s downward trend. I felt good, just a little tired and antsy from the steroids. I was even able to got to sleep at a normal time last night. Then everything changed. If you’re sensitive, you may not want to read the details of this medical issue…

I woke up shortly after midnight with the worst case of acid reflux I’ve ever had. It was so bad that I somehow aspirated into my lungs and was coughing so hard I threw up in spite of having taken my anti-nausea pill before going to bed. I was having a hard time breathing, and felt like my chest was on fire. But I couldn’t stop coughing and trying to clear the junk out of my lungs. This went on for at least half an hour and then subsided enough that I could catch my breath. But I was still coughing. I took cough medicine, Tums, and a different anti-nausea pill. I was finally able to get back into bed as long as I was sitting up and read for a while. Then I had to get up so came and played on the computer for a while. I was able to finally go back to sleep around 3 or 4 and slept until 9. When I woke up, I felt achy and headachy so checked my temperature; it had shot up to 99.8 – normal for me is 97.6 and under.

I was still having breathing issues, so called my onc doc’s office around 11:30ish. When my PA called back,I told her that on exhalation, I sounded like there was a sick cat mewling in my chest; she told me I’d better come in for a ‘cat’ectomy – gotta love that sense of humor!! She told me to come in right away for a CT scan as they were concerned about a blood clot in the lungs. I was sure it was more likely to be aspiration pneumonia from the reflux. The CT scan showed no blood clot, but no pneumonia either, but that wouldn’t be likely to show up for a couple of days anyway. So they gave me more steroids IV and an antibiotic IV. I have to go back daily for the IV antibiotic, and take the steroids orally every day for six days. And the CT scan showed that all but one of the tumors had shrunk – lagniappe!

But wait; there’s more!! In the infusion room, I used my foot to push in the footrest on the chair before I sat down. Except my foot slipped and I managed to rip off about 1/4″ of my big toe nail, which then wouldn’t stop bleeding – probably because of the Avastin and the daily aspirin. So I ended up having to have a compression bandage and an ice pack on my big toe, which continued to bleed for a good half hour. And Steve yelled at me for pushing the footrest in myself instead of asking him to do it. ūüėÄ

We were at the onc doc’s office from around 1 until 5:30 – we’re home now and my breathing is a little better. We’re waiting for the pharmacy to call to let me know my prescriptions are ready – more steroids and an inhaler to help my wheezing. And I have to take Tums 3 times a day in addition to the Omeprazole I’m taking twice a day for reflux. My breathing is a little better now, but I’m still coughing and wheezing, and my chest hurts still.

Never a dull moment, right?

Ups and Downs

Today’s visit to Oncology went sort of smoothly. My PA was concerned about side effects and the extended duration of them, but we agreed that the severity may have increased because last week was an Avastin week (I get it every 2 weeks in addition to the Carbo and Taxol) and that may have made the side effects worse. The plan is to see what happens this week without the Avastin and to call in if there is worsening or additional severe side effects. I’ve given up searching to see how many people have the same side effects because the percentage is usually extremely low. ::SIGH:: It isn’t always fun being an outlier.

So what were the side effects this time you ask? Okay, I’m putting them all in this paragraph so you can skip it if you’re tired of my litany of woe. I had talked before about feeling as if all my neurons are firing randomly. Well this time was more like stabbing pains all over. They didn’t last long, but as soon as one area stopped another started. And the soles of my feet hurt when I walked – but only if I was wearing shoes. Walking barefoot made it more bearable. My left ankle hurt – but only the left one – and my right leg felt tight. You know that feeling when your skins dries and you forgot to put lotion? Yeah, that. So the ankle and leg issues might not be side effects but something else. But having them kick in with the side effects wasn’t fun. Normally the side effects are gone after two days, but these lingered through Thursday, Friday, Saturday, and at least half of Sunday. Yesterday (Monday) was the first positive energy day since last Wednesday. Okay – done.

My port is still acting up. No amount of repositioning my body or contorting my arms and head or almost standing on my head got any blood return. My PA told the nurses to give me the option of having the flush done again or just do the infusion as usual. As soon as the nurse called the lab to come draw blood, she was able to get a flash of blood but that was it. So I was quite comfortable in having the infusion without the Drano stuff. And everything was fine. The blood draw was smooth – no problem hitting the vein on the first try. And my blood counts were good. I won’t have the CEA results for a couple of days, but it has been trending downward, just not as fast as I would like. But I’ll take the decrease!

I’m tired of finding hair everywhere, so my friend is going to shave my head again. There’s no point in trying to grow it back until I’m done with the Taxol. Hoo boy. It still depresses me that my hair is falling out. I know it will eventually grow back, and I know there are advantages to having no hair, but still…

So I guess things are okay. Except for the side effects lasting just over 3 days, and the severity of the stabbing pains, and losing my hair, and okay, no more whining.

Preparing for Death

No, I’m not even close to dying yet. But preparations need to be made anyway. I have been putting off something as simple as a Living Will. Because if I actually do it, then I’m acknowledging my own mortality. My partner and I have talked about preparing, but neither of us has done anything about it. There are so many things to think about besides the Living Will. There is all the minutiae such as web sites and passwords. I am all over social media; he isn’t and doesn’t have a clue about Facebook and Twitter and Klout and all those other sites I’m part of. There are family and friends to notify. Dogs to take care of. The mortgage on the house. The car. Memberships in things like Amazon and Goodreads. So much to do.

Life can be gone in a heartbeat. It could be a car crash; a flash of lightning; a sudden heart attack; a ruptured aneurysm. Life is fraught with danger. But if I don’t prepare, then I won’t be ready, and I won’t die. Magical thinking I know. But I have no other reason for putting off what I know needs to be done. And there is so much to think about like cleaning out files so the survivor doesn’t have to do it. Deciding who gets what possessions. Going through the picture album and writing down who is in the pictures so that future generations don’t have to guess. So much to do.

I need to go make a list…