WBR Progress (?) Report

Today is day 7 after the last radiation treatment, and some new symptoms are appearing, and some other symptoms are continuing. The worst is the painful swallowing. I’m getting tired of soups and pureed food. But I know if I try to swallow real whole food, I will be screaming in a couple of seconds. I’ll just have to be patient.

We met with my PA yesterday (Tuesday). She told me I had ‘sunburn’ inside my ears and nostrils. Which would explain the soreness and itching. So far there is no blistering on my scalp or in my mouth. The back of my neck is quite red, though, with a couple of spots that look like they could turn into blisters. The inside of my mouth doesn’t have any ulcers or sore spots at the moment. She recommended I go back on the Dexamethasone for a few more doses as I was feeling so rotten yesterday. So I had an IV infusion of the Dexamethasone, and it did help. So now I will take 1/2 tablet every other day for three doses, and then I’ll stop.

Today my throat is much more painful. And then I had a bout of nausea and vomiting, which scraped my throat even more raw than it already is. I should have know better and put something more in my stomach before I took the Vicodan. But in my defense, I was desperate for some relief from the pain. I don’t think I’ll do that again! So for now, I’m managing to keep the worst of the pain at bay by using the Lidocaine-Maalox-Benadryl combo the pharmacy mixed up, and the Chloraseptic throat lozenges. Between those two, my throat is eased enough that I can at least swallow without wanting to cry.

I’m not as unsteady as I was, so that’s a plus, and the fatigue has eased up a bit. The skin on my face and neck is extremely dry, and my eyes are drier, too. My vision is a little ‘off’, and I’ve developed some interesting-looking floaters. I’ve had those before, and they’re usually little black spots that soar up and down in my field of vision. But there are a couple that look like little wormy shapes and don’t have a set path but just wander all over. I’m making an effort to remember to put in my eye drops that I was using before. My contact lenses aren’t working as well as they were, so I’ll just have to wait that out and see what happens. I think the chemo changed my vision a little, and the radiation has changed it some more. I’m not due for an eye check until April or May, so maybe by then, my eyes will have settled a bit.

Then there’s the roaring in my ears. It’s not ringing, but sometimes a high-pitched whistle that sounds like a whistling kettle, and sometimes a roaring sound as if there’s a waterfall rushing along in the next room. My hearing seems to be as acute as it ever was, so I’m not worried about that too much right now.

My left hand is almost back to normal, as best I can tell. There is still some weakness on that side according to my PA. I’m encouraged that my hand is better, because it means the tumor is no longer pressing on the ulnar nerve. And by extrapolation, I’m guessing that the brain tumors are shrinking, too.

I’m scheduled for a PET scan in 2 weeks, and then an MRI of the brain 3 weeks after that. And then we’ll re-evaluate to see where we are and how to get to where we need to be.

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.

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.

Brain Fog and Other Interesting Things

So here I am the day after chemo, and the side effects are already starting. For whatever reason, my brain seems to be functioning worse than before. I’m having a hard time concentrating – harder than usual. I can’t read a long paragraph without losing the thread half way through. And forget trying to find the right word when I’m speaking or writing. I often have to leave a blank when writing and go back to it. I hate that part most of all. I’m a language/grammar/literature nerd, and not being able to read and write without putting a lot of effort into it bums me out. I used to be able to hammer out paragraphs and paragraphs of fiction in one sitting. Without having to edit much. Now, I can’t even write one paragraph for my blog without slowing way down and re-reading every word several times before hitting the publish button.

The depression is also hitting hard this evening. I know it’s the chemo and the steroids – much of the steroids are the extra ones I’ve had to take along with the antibiotics for the aspiration pneumonia I suffered a week ago. I’m still taking oral antibiotics through Saturday, and have one more day of the steroids. The good news is that my lungs have cleared, and I’m not coughing up a bunch of junk any more. And the wheezing has stopped, so no more giggling at the weird sounds coming from my chest. Spud appreciates that too as the noises seemed to disturb him. His responses were funny and kept me giggling so hard some nights I kept myself awake.

Other side effects, like the numbness in my face and the mucous membrane soreness and pain aren’t as bad because my dose of Taxol was reduced a little. But I’m still having them. I can put up with all of that as long as I know the drugs are doing what they’re supposed to do. And so far they are.

There have been some adjustments made in the other meds I’m taking – my diuretic was increased because the Avastin was causing my blood pressure to start creeping upwards, and the medication for my acid reflux has been doubled. I notice the reflux is worse on chemo day and the day after and then gets better. But I’m still having to sleep sitting up, which doesn’t make for a very restful sleep. I wake up dragging, and even napping during the day doesn’t help. I’m hoping the increase in the meds will help.

So basically I’m still here, and rapidly approaching my one year anniversary of diagnosis. One part of me still can’t believe I have lung cancer. And there are days when I don’t want to see or read anything about lung cancer. But I’m a researcher by nature, and I can’t resist digging deeper when I see an article about a new trial, or a new treatment, or a new diagnostic test. Sometimes I feel detached from myself and my diagnosis, as if it’s happening to someone else. I have since learned that there are components of PTSD associated with a diagnosis of lung cancer, so that would explain the detachment. And it’s something I will explore further at some point. But for now, I’m just doing the best I can to be here in the now and take one day at a time. And I suppose that’s all anyone ever does.

Onward and upward!

Despair and the Dark Nights of the Soul

I have had a troubling cough for a few weeks now. It could be related to chemo; it could be allergies; it could be that the one tumor’s growth is constricting airways. I’ve been able to tolerate it okay until the last couple of days when it woke me in the middle of the night coughing so hard I almost threw up. I got out my homeopathic cough medicine that has helped tremendously, but I have to take that every 2 hours, which makes it hard to get a good night’s sleep. I have some cough medicine with codeine that I don’t want to take unless absolutely necessary; it makes me dopey and constipated and that I don’t need right now. I finally took some just after lunch and slept away the afternoon. But I didn’t cough.

The fatigue I’m feeling now could be residual from the cough medicine, or it could be the side effects kicking in already from Tuesday’s chemo. I’m also feeling depressed and listless. I sometimes wonder whether all this chemo is really helping or hurting. When I have these dark nights of despair, I have trouble remembering the last time I actually felt good. My team is wonderful at coming up with solutions, but there’s only so much they can do. I do try to stay positive, but there are times when I wonder if all we are doing is worth it in the long run. And seeing others succumb to this disease makes me feel worse. Another warrior just entered hospice because treatments are no longer useful.

And again there’s the twinges and aches and pains that could be from the chemo, or new metastases, or the current tumors growing. It can be so trying. I know these feelings will pass once the fatigue eases. And in the meantime I have to just be patient. But it’s hard.

I told my PA about the face tenderness; of course she’d never heard of anyone having that side effect before. First she said maybe I should take the Dexamethasone for a few days, but then we decided to wait and see if it happened this time since I wouldn’t be getting the Avastin on this round – I’ll only get that every 2 weeks. And it was disconcerting to see my CEA had jumped up more than 20 points from the last one. I don’t know what’s going on, and I’m scared that things are progressing more than they should. I can only wait to see what happens after two cycles of this treatment when we do another CT scan. I’m finding it more and more difficult to be patient.

Steve keeps telling me to just be patient and things will work out, and I tell him he’s not the one going through this. He and I both know he wouldn’t be tolerating this anywhere near as well as I am. I know he wants me to feel better and to beat this, but I get so tired of fighting and wondering who is going to win, me or the cancer. It’s exhausting. I so want to feel better and to beat this, too. I need rest and a good night’s sleep.

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.