A Waiting Game

It seems to me that cancer is a waiting game. I wait for a diagnosis; I wait for treatment; I wait to see what the side effects are going to be; I wait to see if the treatment is going to work. And the waiting part is wearing. And so are the side effects. I’ve been having weird, transient, stabbing twinges today. That isn’t on the list of side effects anywhere. So I’m not sure if it’s from the chemo or not. It’s not really pain. So I guess I’ll see what happens tomorrow.

Today my hair started falling out. And even though I knew it was going to happen, it was a shock. All I did was run my hands through my hair, just like I usually do a lot during the day, and there was a lot of hair in my hand. My hair has never been thick, or full, but fine and thin. But the thought of having no hair at all is a little depressing. I tell myself I will save money on cuts and color, on shampoo and conditioner, and feel I’m lucky this is going into winter so wearing a wig won’t be so unbearably hot; but it really doesn’t help. I’m not a vain person – I can go all day without looking in the mirror – but I hate the thought of being bald. On the other hand, maybe I’ll like it and keep my head shaved. No, I don’t think so.

Second Day

Today was Day 2 of the new regimen. At this time 2 weeks ago, I wasn’t doing so well; today was fine. Other than being tired from not sleeping well, and a little dizziness, which could be from lack of sleep, I had a good day. I slept a couple of hours last night when I first went to bed, then was up the rest of the night.

I was able to get out to do a little food shopping and to Target for new jammies and underwear. Then I took a nap when we got home. My appetite is good, and so far no nausea or other symptoms. What a difference! The rest of the week will give me a pretty good idea of what to expect for the next three weeks since the side effects are cumulative.

Feeling encouraged. 🙂

Routine

While it’s still fresh in my mind, this is what my treatment days are like, in case you’re interested. If you’re not, you don’t have to read this – I understand.

My appointment was for 9:20, but we always arrive at least 10-15 minutes early, because we leave early in case there are problems with traffic and stuff. I check in at the front desk. P always has a cheery greeting; he signs me in and takes my money (co-pay for every visit), then lets the team know I am here. I have to fill out a check sheet every time, which is basically any symptoms I might be having that are ongoing or new. They have a neat system that I’ve never seen before; on the print out that goes to the team is a short description of what I’m wearing and hair color. This way nobody has to stand at the door and yell, the team member comes right up to me – it seems like a great system and seems much more personal!

Waiting time varies depending on patient volume and how much time each one needs. I love that I never feel rushed – even with the doctor – because each staff member takes all the time we need for questions. Once it’s my turn, there’s weight, oxygen levels via a little thingy that encloses the end of my finger (it has a technical name, but it escapes me at the moment), temp, pulse, and blood pressure, to be recorded. Then it’s into a room to wait for the team leader (J today as my regular K is on vacation this week). I was more anxious than usual today as I know Friday’s blood work included a test for tumor markers; my first test was high but not too bad at 70.3. Testing for these markers over time shows increase (tumors growing or not responding to treatment), stays the same (no response to treatment), or decrease (tumors shrinking or responding to treatment). My result was a 34 – just over 50% decrease. That combined with the fact that my cough went away (the initial reason I went to the doctor) means the treatment is working. So we were pretty happy with that result (euphoric is more like it). Now just because the marker decreased doesn’t mean there’s a cure in the making, but it does mean we can manage the disease for now.

J went over the protocol for the new drugs; answered a bunch of questions; checked out a few things like lungs, heart, etc. Then we were ready!

The infusion room wasn’t as busy today and we were able to easily find a recliner with visitor chair. The room is divided into 3 sections with 8-10 recliners in each section. J gave my chart to one of the nurses who took it to the admixture room (where they mix up the IV bags). Then we had to wait some more for everything to be mixed up after I signed a consent for today’s treatment. That included a long list of possible side effects, none of which I want to have! Things like tingling in fingers and toes which could lead to permanent nerve damage; hair loss; nail loss (didn’t know about this one); mouth sores; low red blood cell and platelet counts; increased susceptibility to infection and bleeding; and the usual constipation, diarrhea, nausea, vomiting, etc. And I’m sure I left some out!! But if it knocks down the tumors, I’ll deal with the consequences!!

C was my nurse today and having the power port made it so much easier for her and for me as she didn’t have to find a good vein, and I didn’t have to worry about more bruising to my delicate hands. (Ha ha) Today there were 3 pre-treatment drugs in small IV bags; one anti-nausea, one antacid, and one antihistamine. Then it was time for the heavy duty stuff. One bag went in over a 2 hour period after an initial very slow drip to make sure there weren’t going to be any major side effects right away; the next one over 30 minutes. Both were in small bags so I didn’t feel like a blimp from all the fluids when we were done. There was some pre- and post-treatment flushing of the port and we’re done. And by the way, when the saline is pushed into the port I can sort of taste it – is that weird or what?

I spent the time listening to my iPod; talking with other patients and the nurses; reading; and talking to Steve, who got antsy so I had to send him home for a while. The patients exchange tips and information, which is great. There were a couple of new people and everyone chipped in to let them know what to expect – great camaraderie!!

We were home today shortly after 2; much better than last time when it was after 5 by the time we got home. I’m feeling good but on my guard for any symptoms of those nasty side effects. C told me to call any time if there were any side effects, and if I wasn’t sure if I needed to call or not, to call anyway. There is always a doctor on call 24/7.

I certainly feel fortunate to have this wonderful group of people on my side. Everyone, from business office, to schedulers, to med assistants, to nurses, and nurse practitioners, and the doctor, has been just wonderful! We can’t say enough good things about them. They are always upbeat yet business-like. The nurses in the infusion room are always joking around with each other and with the patients – it’s almost like a big party. Yes, cancer is serious, but that doesn’t mean there has to be a bunch of long faces; we have enough of that when we’re at home and talking about treatment and symptoms and contingency plans and all that sort of stuff.

And I feel fortunate for my family and friends who are cheering me on and taking this journey with me – you rock!!

I am blessed.

🙂

Dark night

There are times when I wake up at night and wonder why me? I know that isn’t a good question and that there is no answer, but I ask it anyway. All I wanted was to be able to enjoy a few years of retirement doing something I enjoyed instead of toiling away to earn a living at jobs that were mostly unsatisfying and soul-crushing. I was good at my jobs, but grew bored quickly; then the jobs became a chore. I have been working since I was 16 – not always full-time – but I’m weary of working. Bone tired. So why can’t I enjoy a few years of leisure to compensate?

The middle of the night is probably not the best time for philosophical meanderings for me. I only sleep for 2 or 3 hours at a time before waking. Very rarely do I sleep for solid chunks of 4 or more hours. Part of this is because the dogs tend to wake me when they want to go out. Since one is getting elderly, she’s 12, and the other has a history of ‘marking’, if they want to go out, I let them out. What’s weird is that if Steve asks them if they want to go out, they just nestle further into the bed covers (yes, they both sleep in bed with us!) but as soon as I ask the same question, they’re running for the doggie door, which is closed off at night.

Lots of things go through my brain in the middle of the night. Things like will it bother me when I lose my hair? How long do I really have of a quality life before the cancer kills me? It isn’t fair that I have to deal with this; I want the opportunity to dance at my grandchildrens’ weddings. I want time to finish writing all the stories in my head; I want time to be able to go to all the places I haven’t been yet – or at least some of them.

I don’t know how much time I have; I may not know for quite some time. Everything hinges on how well the chemo works. And I’m not sure whether or not I want to be on chemo for the next several years.

Then I tell myself that nobody really knows how long they have to be on this earth. So I will try to make the most of whatever time I have left. I will continue to be grateful for every day I open my eyes on this beautiful world we live in; I will continue to be grateful for family and friends; I will continue to be grateful for whatever opportunities I have to have fun. And I will do these things for as long as I am able.

Dreams

When I first began my chemo journey, someone (and I don’t remember who it was) told me that people on chemo tend to have more vivid dreams. I don’t know how true that is, but I have been remembering more of my dreams lately. Usually I wake up with a faint hint of a dream that disappears like a will-o-the-wisp as soon as my eyes are open. The past three weeks, the dreams have stayed with me, sometimes for days, and it always seems I dream of places that are familiar, although when I wake I have no remembrance of ever being there.

There are certain dreams that I seem to have over and over; and there are some dreams that visit me when I’m awake. One dream in particular has stayed in my memory since childhood. I’m not going to bore you with details on any of these dreams, but some are particularly bizarre, and I think we all have those.

Dream interpretation is not an exact science, but I do believe that dreams are a way for us to process information that seems impossible when we’re awake. So it makes sense that my dreams are more easily remembered right now as there is so much information to process and remember.

I am looking forward to the new regimen starting on Monday; I’m eager to find out if it’s really going to be easier on me than the last one. Stay tuned…

News

We met with my treatment coordinator today; sort of good news. I am very anemic from the chemo, and more blood tests will help figure out what we need to do about it. There are several options depending on what the blood tests show. Also, she thought the last round of chemo was extremely hard on me, so on Monday we will begin a new treatment protocol of 3 weeks on and 1 week off. I will have chemo for the next 3 Mondays with different drugs, then one week off. I will still need to have blood work every week.

The coordinator thinks this new treatment will be just as effective but without the potentially permanent side effects of the current treatment. I didn’t know what to expect from the initial drugs so didn’t know the nausea, and rash, and hearing issues, and other things, were so horrible – sometimes ignorance is bliss!

Also, I’m feeling like I’m getting a cold; that stuffy-scratchy-throat-congested-chest feeling. Because I’m starting to cough, she started me on a Z-pack of antibiotics as a precaution along with OTC cold medicine. She also recommended I go back to using my inhaler.

So things aren’t too bad at the moment. Downside is I couldn’t go to work today; my boss is awesome and told me to take care of myself first and don’t worry about work (hard for me to do!) I will try again tomorrow. 🙂

Sadness and Anger

I felt more energetic today and was able to accomplish quite a bit. I even went grocery shopping with Steve. Tomorrow, I will meet with team members to see how Friday’s blood work looked, and to see what our next steps are. I am scheduled for a 2nd chemo treatment a week from tomorrow, but at least this time, I’ll know to expect to be sidelined for most of the week.

I am reading more information about lung cancer, and I’m angry that there is so little attention paid to it compared with other cancers that affect women (men, too, but I’m a woman.) The research dollar amounts spent on Lung Cancer are abysmally inadequate given that lung cancer is not generally diagnosed until it has already metastasized, and the survival rate hasn’t changed much in 40 years. Where are the “Race for the Cure” and the walks, and all the other fundraising efforts for lung cancer. Did you know that the ribbon color for lung cancer is white, or pearl; because it’s the ‘invisible’ cancer?

I am also angry that people assume that if you have lung cancer, you must be a smoker, and therefore it’s your own fault you got this terrible disease. This needs to change. Until we remove the stigma, people won’t want to give money for research. Nobody deserves cancer of any kind.

It also makes me sad that I have this terrible disease. There are days when it doesn’t seem possible; the doctors made a mistake; the X-ray is wrong; the C-T scan and the PET scan and the biopsy are all wrong; even though I know in my heart they aren’t wrong. I wrestle daily with this diagnosis, and I look for hopeful signs that the disease is waning. But there are no signs to see; it’s too early. And I dissolve into tears once again.

Our dogs know there is something wrong. Peanut, who normally isn’t affectionate, has been much more needy than usual. Spud has been glued to my side the whole time I am home; this isn’t that unusual, but he, too, is much more needy. Steve has taken over their feeding. Probably an overabundance of caution on our part as my immune system is still quite strong. But on the other hand, they need to be used to a different routine if I shouldn’t survive as long as I would like. Steve took Spud to the groomer yesterday so he and the groomers know each other.

I am doing what I can to make sure Steve and the dogs can manage without me even as I continue to fight. It is a strange dichotomy to prepare for one’s death but hoping it won’t be for a long while yet. I have told my sons what the odds are, but I’m not sure even I believe the poor survival rate.

I would like to sleep through this whole ordeal, but I know I can’t and it wouldn’t solve anything. So I will continue to fight through the tears…