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…

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.

New Side Effects

I had no major reaction to the chemo on Tuesday, but they wouldn’t use my port because of some transient pain and then stabbing pains after accessing and flushing it. Accessing it gave a good blood return, and they were able to fill up all the tubes they needed for my blood work. But I had to wait to have a Port Dye Test to make sure everything was okay before they would use it for chemo, so we had to go back to the veins. It took 4 tries to get a vein that was good – twice the needle went straight through, and one vein blew as soon as she hooked up the IV. Fourth time’s a charm. :D

The dye test was fine, so I probably just have some inflammation or irritation or something. I’m glad the port is okay – I didn’t relish the thought of having to deal with a new one again. And I certainly don’t want them trying to access my pitiful veins again.

Wednesday was a good day, until late in the day. I started to develop ‘the achies’ as I call them; all over aching. I took a couple of Tylenol and went to bed only to be awakened in the middle of the night with the dreaded hiccups. These were bad enough to shake the bed – the dogs were not happy about that. I sat up for a while and they went away.

Thursday the achies continued along with the skin on my face hurting (I just report ‘em, I don’t explain ‘em!)and a lower back ache. And enlarged lymph nodes in my neck. My temperature was normal, so I just took more Tylenol and went back to bed. I spent most of the day reading and napping. By Thursday evening, I was starting to feel better, but still ached along with twinges as all my neurons decided to fire at random. Lovely feeling, that. I managed to eat plenty – to keep up my strength – and drank lots of water to keep my kidneys functioning, and that meant getting up every hour or so to pee.

Friday was marginally better. More twinges than aches and my face no longer hurt. And no more hiccups. So reading and napping again. But now constipation has set in again. Ugh! It seems a side effect for all these chemo drugs is either diarrhea or constipation. Luckily I have drugs for both so I’m covered either way.

The last time I had Paclitaxel and Carboplatin I had the hiccups and the neuron-firing twinges and the constipation, so those were sort of expected. But the sore face is a new one – I can’t wait to see what my team says about that – and I haven’t seen it in any list of side effects. It will be interesting to see if I have it after the next dose next week.

Today was even better; hardly any achies and just a few twinges. I had enough energy to shower and go to the grocery store, and wash all the bed linens, so it was a generally good day.

Chemo certainly keeps life interesting!

Update

We met with the oncologist today and the news is generally good. My CEA is down, my liver enzymes are down, but one tumor in my upper left lung grew while the rest of the tumors shrunk – what?? Since this tumor grew and looks like it might be wrapped around a couple of airways, it might explain the cough I’ve been having, or it could just be allergies. Who knows? And there is some liver damage – probably from the chemo – but since the liver enzymes are coming down, it’s probably not serious at this point.

We now have a new plan of attack; we are going back to the Carboplatin and Paclitaxel that was the 2nd round of chemo treatment, and we are adding Bevacizumab (Avastin) every two weeks. I will be going in for 3 weeks out of 4 again for a long day of chemo – about 5 hours or so. It’s a good thing they have WiFi!

I’m feeling relieved, but pissed that I was just getting a good head of hair and now it’s going to disappear again. And it’s summer so wigs are going to be hot! I know the hair won’t go right away, so maybe I can make it into cooler weather before it does. And it means more steroids – just what I need is more weight gain!!

And if this works without any major side effects, Avastin can be used for maintenance. So overall I’m feeling pretty good. And relieved!

Onward and upward!!

A Little Bit of This; A Little Bit of That

I have been on edge and irritable for the last couple of days, and this is probably going to be one big whiny post, so you have been warned. Part of it is not knowing whether or not we can find another treatment that will be effective, and part of it is the pain in my hands and feet, and part of it is the state of things in general.

I have arthritis in my finger joints, especially the first joint on the first finger of each hand. And both of those fingers are gradually rotating themselves and getting totally crooked. But what is really problematic is the neuropathy in fingers and toes. It isn’t like the pins and needles you get when feeling starts coming back after a foot has gone to sleep. This is more like stabbing aches in fingers, toes, and soles of my feet to the point that I’m having to take Tylenol.

And then there’s the ear thing. It isn’t exactly ringing; it’s more like that feeling of pressure when you’re underwater. It hasn’t affected my hearing, thank goodness. I’ve always had extra sharp hearing and that hasn’t changed.

I almost forgot the brain fog. We were at the grocery store earlier in the week, and I forgot my PIN # for my debit card. No big deal because that happens periodically. But then when we got home, I could not remember picking out the fruit that we unpacked. And I know I’m the one that picked it out because Steve picks out the veggies, and I pick the fruit. Having no memory of that really freaked me out. I’ve had the can’t-remember-the-right-word often and can handle that. But this was sort of like a blackout and that scared me. It hasn’t happened since; at least not that I remember. Ha ha ha.

I know these are from the Pemetrexed, and I know I won’t be taking that again because of the severe reactions I had with the last two infusions. But I’m tired. I’m tired of the aches and pains and everything else associated with chemo and cancer. I really am trying to stay positive, but some days, like today, I just have a hard time. And I have found that writing about it really does help.

I had the PET/CT scan earlier this week; I will have blood work done on Tuesday; and we will meet with my oncologist on Thursday. No matter what the scan showed, I hope we can come up with a new treatment plan. Whether or not it will work remains to be seen. The first chemo combo I had was supposed to be the easiest one for people to deal with; not so for me. What happens next will depend on the results of the scan and the blood work.

Stay tuned…

An Ending of Sorts

It looks like my treatment with Pemetrexed (Alimta) has come to an end. The infusion at the beginning of June triggered a reaction that I hadn’t had before. And the last one on Wednesday of this week triggered the same reaction in spite of the huge increase in my steroid doses for the day before and day of the infusion. So I ended up being pumped with more IV Benadryl and steroids before the itching and back pain stopped and they would let me go home. I also made sure this time that I had a step-down schedule for coming off the massive steroid dose I had. So today I’m feeling like crap as usual. (Last time I managed to bypass the crappy fatigue day because of the steroid crash.) I’m also noticing some neuropathy today that I haven’t had before. When I was getting the Alimta with the platinum based drug I had some vague tingling in the soles of my feet and not exactly ringing in the ears but a feeling of being underwater. And that’s part of the reason they switched me to the Taxol combination for a while. But this is fingertip tingling now. Damn!

So what’s next? I don’t know. On Wednesday I had a brain CT, which showed no evidence of metastasis – good news! And now I’m scheduled for a PET scan in 2 weeks before meeting again with the oncologist to discuss strategy for the next phase of treatment.

In a way, I’m glad to be going off the Alimta. It was doing nothing to reduce the tumors but was keeping them from growing. And my CEA continues its upward trend, which has my team a little concerned. It’s back up to 50. I know that’s not high, and still much lower than the very first reading I had. My liver enzymes are back to close to normal, so that isn’t what’s raising the CEA. But now we’re venturing back into the unknown and that is scary.

But I’ll survive and cope with this minor setback, which may not even turn out to be a setback. We just have to be patient and see what comes next.

More Weird Side Effects?

Since my last treatment, I’ve been experiencing some things that I never would have associated with Pemetrexed. I suffer from dry eye – well I do live in a desert and I’m getting older – which tends to make my eyes burn and leak a bit. But I have been able to control the symptoms with eye drops. I also have allergies that don’t usually affect my eyes, except for the last couple of months they have been. Or so I thought. I have tried 3 different over-the-counter allergy meds over the last few months with no relief. So I started doing some more research on side effects from Pemetrexed. I found a few sites that mentioned the leaking, waking up with eyelids stuck shut, and burning sensations. So perhaps what I have isn’t allergies at all. Oh, and the sites were medical sites; one of them (http://cancergrace.org/forums/index.php?topic=5262.0)  including doctors responding to questions and issues.

What I found is that 1-10% of patients have the watery, red eyes. And that same percentage have itching as I did after the last infusion. But what caught my eye is the statement that less than 1% could have a dry cough and shortness of breath. This information comes from a UK Cancer Research site (http://www.cancerresearchuk.org/cancer-help/about-cancer/treatment/cancer-drugs/pemetrexed).

I’m meeting with my oncologist and PA next week after my brain CT, so I must remember to mention these symptoms and the possibility that they may be Pemetrexed side effects. Of course, they could be totally unrelated. And I don’t think they’re severe enough to stop the Pemetrexed. I’ve had a 24 hour Holter, and today I had an echocardiogram. So if those are normal, then the cough and shortness of breath are probably not heart related.

And then there’s the depression that I struggle with that seems to be deepening. No matter how hard I try, I find myself losing ground a little more every day. I go to the gym, I try to keep my mind occupied with reading, puzzles, research, etc., but it no longer helps. Something else to bring up as a possible side effect.

But in the meantime, I will just keep going as best I can.