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!!

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A New Adventure

Today I had an MRI of my brain and cervical spine. It went well with the IV sedation, although the nurse had to give me another dose as it started to wear off too soon. Since they were viewing two areas, it took quite a while. I was planning on getting the results tomorrow at my regular treatment appointment. But we had only been home a few minutes when my PA called. The radiologist had called her to let her know they saw multiple metastases in my brain. She apologized for telling me over the phone but didn’t want to wait until tomorrow’s appointment. The radiologist was surprised that I wasn’t having horrendous headaches. But I’ve had no symptoms, unless the problems with my hand are related to that. So now it’s time for brain radiation. A whole new adventure! And it means I’m back on the Dexamethasone but twice a day for now to reduce brain swelling and prevent seizures.

We will keep our appointment with the PA tomorrow as I still need my flu shot and possibly my regular blood work. Then on Wednesday we have an appointment with a radiation oncologist to plan the next step.

This was not what I wanted to hear, but I wasn’t surprised, I sort of knew, just like I knew I had lung cancer before my doctor told me.

So once again 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?

Quick Update

I’ve been running a low-grade fever that spikes up at night. It started Monday evening after I had to take Immodium, continued yesterday, so when my temp was normal this morning, I was happy. Until lunch time when it started edging upwards again. I have also been feeling achy and don’t-touch-my-skin sensitive in late afternoon and evening. I called my onc doc’s office, and of course they told me to come in, and of course my temp was normal when they checked it (but I had taken Tylenol). My PA ordered blood work and my white count is dangerously low and I’m a little anemic. We decided that what I maybe have is viral and not bacterial based on my symptoms. And a viral infection can lower the white count.

So I got another Neupogen shot. I’m hoping that since the dosage of this one was lower, I won’t be in as much pain as I was after the last one. I have strict instructions that if I feel worse, or if I start getting chills, or if I start feeling dizzy, I’m to call 911 and get to the E.R. My white count was low enough to possibly allow life-threatening infection. I didn’t wan’t to take the shot, but after she told me that, I decided it’s probably a good thing to do. We decided I don’t need antibiotics this time as all evidence points to this being viral.

Now I’m at home, taking Tylenol every four hours, checking my temperature, drinking fluids, and hoping I don’t get chills or start feeling dizzy.

Onward and upward again!