I believe in signs. Or at least I am choosing to believe in signs. If you don't want to read about what I believe to be signs from the other side, then no need to read on.
Edwin died almost five months ago. Since then I've been waiting for the dream. The visitation dream. The one in which I see him and maybe talk to him and wake up feeling very certain that he is okay, that he has his healthy body back and that he is at peace. I believe these things to be true. But I want the dream. I have experienced other signs -- several of them. But I still want the dream. On the day of Ed's funeral, I found myself listening to the radio, something I don't do very often. In those few minutes, our song came on -- I never hear it on the radio. But there it was. A few days after the funeral, after I had pulled every rose from the flower arrangements (to press, to dry, and in a failed attempt to make potpourri), a rogue rose showed up on the back patio. I've felt Ed's presence in our old house, and seen smoky wisps of...energy?...right in the area where Ed used to stand and go through his mail after work. While sitting in a restaurant I felt a hand on my shoulder -- nobody was there...nobody could have been there, because I was sitting alone on one side of a booth with nobody behind me. I've had other small signs as well -- other songs, phone calls at the right time, little things. But I still want the dream. Yesterday morning I was at another funeral -- my good friend Debby lost her (estranged) mother last week -- and right or wrong, at the lunch afterward, I asked Debby's husband Paul, an empath/seer, if he had any feelings about Ed and his crossing. The environment wasn't right, of course, but I asked anyway. Paul said that it wasn't time, and that I needed to be patient. That the visit would come when I was ready to move on, which I wasn't yet. And the message would be that I was ready to move on, and that's how I would know. He also said that he was getting thoughts about nicknames that Ed had for me...and that the word "practical" kept coming into his head. He also talked about moving things in the space where I live. I thought he meant that I had moved, which I have, but he meant that Ed has moved some of my belongings around. I think I would have noticed, but then again, would I? I haven't been home since this conversation, because I had my grandson Benjamin overnight at his house, but we'll see what I notice when I get home. I dreamed about Ed last night, but it wasn't the dream I've been waiting for. I can't really remember it. But I was awake in the middle of the night because Ben woke me up...and when I got back into bed, I felt a very distinctive and familiar sensation -- the movement you feel when someone sits down on the bed next to you, as you are lying in it. No cats around, the dog isn't here this weekend, and Ben was entirely on the other side of me, fast asleep. For now, I'll take it. <3
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One of my favorite books is The Secret History by Donna Tartt. There is a passage toward the end that resonates with me, especially now. The narrator is leaving New England for what he believes is the last time, and leaving, too, the girl he loves.
"An abrupt departure, I knew, would be too much; if I was to leave the East at all, I could do so only gradually and so I rented a car, and drove and drove until finally the landscape changed, and I was in the Midwest, and the rain was all I had left of Camilla's goodbye kiss. Raindrops on the windshield, radio stations fading in and out....I had said goodbye to her once before, but it took everything I had to say goodbye to her then, again, for the last time, like poor Orpheus turning for a last backward glance at the ghost of his only love and in the same heartbeat losing her forever: hinc illae lacrimae, hence those tears." When I travel to Maine with Sil, Adri, and William to scatter Edwin's ashes at Acadia National Park, I may not leave Maine with them. I may keep the rental car and drive out of Maine to other places. I would like to see New Hampshire and Vermont. I would like to see Laura in Boston again. I would like to check some states off of my list. But I think mostly, I would like to move slowly after this last goodbye. Overall, he fought long and hard, and he was willing to keep fighting. But since August 15, maybe since August 8, he just got worse every day, really. I mean, after the first hospital visit, he got better, but he was never the same -- always tired, weak, and becoming more and more visibly jaundiced.
So I guess after August 15, it went fast. And even faster toward the end. He was on hospice for four days. I really thought it would be weeks. I thought, let's just do hospice because although all we really need right now is the visiting nurse, this is a better option, insurance-wise. The first morning after hospice, he was only able to walk with a walker -- we thought it was this drug they gave him to deal with his ever-lasting hiccups, but it was the illness just taking over. After that, every few hours, it seems, he got weaker. I have told a few people that I've already grieved a lot of our life together...I mean, first we (well, he, but this was OUR life together) couldn't travel by plane anymore. Then we couldn't really travel far at all. Then restaurants were problematic because he hardly ate and you never know if he'd throw up in public. Then even long drives were hard for him to tolerate – I’m so so so glad we went to Galena in the Corvette for my birthday. Then our sex life ended -- well that happened earlier but we didn't really know that for sure yet. Etc. Part of me is mad at him for dying without a will, but mostly I feel like I did a good job making him as happy as possible, making things possible for him to do, people to see, time with his kids, etc. I have very few regrets regarding my relationship with him. It's like the Ed that I loved most -- the healthy Ed that I fell in love with, did stuff with, slept with, traveled with, who made me laugh every day...he has been gone for a while, really. In some ways, before August. Though, honestly, not much before. And the Ed that I lost two weeks ago, that was the sick Ed, uncomfortable, tired, and weak. I can't grieve losing him. If that makes sense. So there's this disconnect between the “Real Ed” and “Ed Being Gone.” The “Sick Ed” was in between. I think it's so different when things happen fast, with no warning. Or even something in between “fast with no warning” and “fought a long battle.” Yeah, it was an abrupt turn in August, but in the long view, he lived way longer than he should have, because he really was a superhero in that regard. Every three-month period between scans was a gift, and then later, every week was, then every day. I did know that going in. But, and here's something I haven't really thought about too much, or at least really got clear about in my head – Once I committed to Ed, I decided I'd be in in for the long haul -- until he died. I was crazy about him but I’m not sure I was in love with him yet. And I’m not sure he was in love with me yet. But we worked, you know? Really well. So at that point of commitment, he could have become a good boyfriend and I would have fallen in love and stuck by him and done my best and grieved and moved on. Or he could have become The Best Guy I Ever Knew...which of course is what he did. Even when I committed, pretty early on in our relationship, I didn’t know how great it would get. How happy I would be, even at the end. I knew he was great, and I knew I’d fall in love with him, but I really didn’t know the half of it. And even though that makes it that much harder to not have him anymore, I'm so fucking glad it turned out that way, because I never doubted US, you know? I never doubted that I was in the right place doing exactly what I was supposed to be doing. It was like a calling. Which I guess is how I feel marriage should be? All the shit I'm dealing with now (emotionally and practically) would have been so much harder if he hadn't been The Best Guy Ever, because then I might resent doing all this difficult, tedious, painful stuff, or at least felt a little bit like "fuck, what a pain in the ass". But I don't feel that way at all. I feel like this is still part of US. There’s a line in one of my favorite books, The Hiding Place by Corrie ten Boom, about a time when Corrie was in love with someone she could never have. While they were apart, and before she knew the love couldn’t last, she finds joy in everything she does, because she is doing it with him in her heart. She says something like, “Every meal I cooked, every floor I swept, was like a love letter to him.” Yep. Yesterday I said goodbye to my Edwin. He fought like the superhero he was, and I honor him for that brave fight. But after almost four years battling pancreatic cancer, he chose peace. He was surrounded by his children, his friends, and his family in his last weeks and days -- his whole life, really! And was with me and his parents in his last moments.
I don't have the words right now to tell you what kind of man he was, but if you met him for even one minute, you already know. He was simply the best. I am honored and humbled to have had more than three years with him and his amazing family and circle of friends. Every single day with Ed was a good day. Every single day. I can never express how much I will miss him. I love you all, and so does he. I love you, Edwin, with pronouns. Sleep with the angels. According to research I've read on the Internet, the average survival rate for metastatic pancreatic cancer patients once ascites has been diagnosed is 83 days.
I have no idea when the ascites started, really. But this is one really scary statistic. On Tuesday, September 12, we met with the local oncologist (as opposed to Ed's regular oncologist in the city), hoping that Ed would start chemo again, now that the hospitalizations are over, he's stable, he's feeling okay, and we're draining the fluid regularly. The oncologist took one look at him and knew things had really changed. For one thing, Ed's so jaundiced that the doc is worried about a blockage, so he ordered a liver ultrasound for the next day. For another, Ed's lost so much weight, he looks like a different person. He is so much thinner, malnourished, etc. that the chemo dosage would be much lower, so it has to be recalculated. And the doctor made it clear yesterday that there's only a small chance the chemo will do much good, and a higher chance than before that it will be much rougher on Ed (though he tolerated it well last time). We'll talk to him again on Thursday or Friday. I'm not sure if he'll make a decision himself, or give Ed any sort of vote, or what. I asked him about the trial drug, and he said it's still possible if Ed is up for it at the end of October, but honestly he didn't sound hopeful that Ed would be up for it. Ed does, however, now have a PleurX catheter placed, and I'm in the process of learning how to drain the fluid through it. I'll do it for the first time tonight. This will allow him to be more comfortable, and hopefully get more food in him, and get stronger. But, and here's the really bad news -- we talked to the local oncologist yesterday morning (September 15), once he had looked at Ed's liver ultrasound. There is too much disease in Ed's liver for him to go back onto chemo. With the level of bilirubin, he wouldn't be accepted into the trial in October. His oncologist is contacting hospice for an evaluation. It's not like we weren't somewhat braced for this news, but fuck. Ed's ex came over, and he told her. They talked about all the things they should have talked about months ago -- telling the kids, financial stuff, arrangements, ways to remember Ed as the kids grow up, etc. I was part of the conversation once they'd gotten through some of it. I wrote things down, of course. It was very difficult, but I'm just writing down the fact right now. Then the hospice nurse came to tell us about their services. Another difficult thing to deal with, but honestly, I was glad to deal with all of it in one fell swoop rather than a little bit of hell each day. There's more hell to come, but I'd like to manage it in a way that allows some lovely days without any difficult conversations as well. Capturing the facts.
On August 8, a scan showed that the main tumor is growing, and that there are two small spots on Ed's liver. The decision was made for him to leave the Durvalumab trial and wait until the drugs had been out of his system for 5 of their half-lives. That will bring us to the end of October. In the meantime, he will go back onto the "standard of care" chemo drugs, gemcitabine and abraxane (Gem/Abrax). He was on those drugs last year and tolerated them well. In addition, his bilirubin numbers were a bit elevated, so they wanted to look at his bile duct stent through a scan. That was scheduled for Monday. On August 15, he had one round of Gem/Abrax at U of Chicago. Then I left with Adri for Gen Con. His parents stayed with him during most of that trip. He did well, but had trouble getting enough food in him and certainly enough liquid. He had certainly been suffering from a condition called ascites, which means a build-up of fluid in the abdomen, and it was causing him some discomfort and inability to get/keep much food down. I got home on Sunday, August 20, exhausted from the drive, the activities of Gen Con, and sleeping on a terrible hide-a-bed in the hotel room. Ed was very tired, hadn't eaten much, and seeming and feeling weak. He seemed to have chemo brain, but he talked to the kids, and we gave everything the things we got them, and that was that. The kids went back to their mom's that evening, as school was starting on Wednesday. The next day, Monday, Ed had a scan which showed that his stent was fine. It was a long drive, though, and tiring. That evening, he was really exhausted, and a bit slow/confused. I wasn't sure if it was true chemo brain or something else. The next morning I took him to the ER. He was very dehydrated, his platelets were critically low, his white blood cells were high, his kidneys were barely functioning, he had neutropenic fever (neutrophil numbers were off -- can't remember the details), and they thought he was septic (an infection sort of all over, no definite place of origin). They admitted him, and he stayed for four nights. IV antibiotics, platelet transfusion (really just hanging a bag on his IV), IV fluids, etc. He saw the oncologist, the hospital doctor, the infectious disease doctor, and a neurologist. Also a physical therapist, a social worker, and a dietitian. By the time they discharged him on Saturday, the only thing they were really worried about was the platelet count, which rises slowly, and was definitely rising. Appointments made for chemo and an evaluation by the local oncologist (which whom he had chemo last year). Came home, spent a few days at home, sleeping well and trying to eat. Saw the visiting nurse twice. He was on a liquid diet for half day because of the difficulty keeping food down. That helped, and he quickly started eating regular food, though not enough. He was very bloated, and although the ascites (the fluid in his abdomen) was mentioned in passing during the hospital stay, nothing was really said about dealing with them. On Thursday (so now this is August 31, just before Labor Day weekend), he felt short of breath, so we went back in to have him looked at. They did an EKG and a chest Xray, though I knew it was the ascites. They gave him more IV antibiotics because they suspected pneumonia. Finally, on Monday, they did a parecentesis procedure, which drained 13 pounds of fluid from his abdomen. He felt much better, but was of course exhausted. After an amazing drug that dealt swiftly with Ed's opioid-induced constipation, we were discharged on Tuesday, September 5. (In the meantime, I did attend my grandson's first birthday party on Sunday, September 3. Ed also had several visitors: his ex-wife, his friends Sue and Tony, his friend Steve. I also reconnected with Barb during this hospital stay, and had dinner with her one evening, which was much-needed.) Anyway, home Tuesday, and then he had another paracentesis on Thursday, which helped for about a day. The fluid builds up so quickly that he suddenly has trouble eating again. The next step will be a PluerX catheter put in, which will allow me to drain the fluid (or he could) at home, every day if necessary. It will keep him comfortable and hopefully able to eat more and stay hydrated. Time for a nice long vent.
We've been having a great time at the Dells so far, on Day One. We met Joelle and her friend at Deer Park, had a late lunch, got settled in the hotel room, and then Ed napped while the rest of us went to the pottery painting thing (he needed it, plus he doesn't like the painting thing anyway), Then J and friend left, and we relaxed a bit, and then all went down to the arcade, where Adri and her friend Alina both won bonus tickets on different games. Great afternoon. And Ed gets a lot of points for everything, plus he felt well enough to drive up here, do fully his share of packing, carrying, planning, organizing. The only atypical things were that he didn't eat much lunch (he has early satiety, meaning he feels full most of the time, thus my difficulty in getting him to eat a lot...he's losing weight, not good), he walked a bit more slowly to the arcade (tires easily), and had that nap (didn't sleep well the night before). Here's the fun part. After the arcade, getting ready to make a quick dinner and then send the kids off to do homework (Yes, on vacation; it's near finals week) -- HE REALIZES HE FORGOT HIS MEDS AT HOME. 2.5 hour drive one way. Now, the constipation meds that he depends on -- those I can buy at a drug store, no problem. And he remembered the pain meds and thyroid meds he also depends on. What he forgot? THE TRIAL DRUGS THAT ARE KEEPING HIM ALIVE AND ARE UNAVAILABLE ANYWHERE BUT AT THE TRIAL HOSPITAL (and currently our fridge). He brought the syringes and stuff. But everything that "lives" in our kitchen, he forgot. SO PISSED OFF LAST NIGHT because I have all that shit on a list (well, the list says "Eds meds and everything he needs for them" and if he'd indulged me in my suggestion that after he packs, we sit down with the list to double check, just to ease my own pre-trip anxiety, we would have realized it. But I got push-back every time I tried to remind him of something or ask him if he packed X. So much so that I said fuck it regarding that sit-down list-check. So on the one hand, I feel very guilty for not going with my gut and doing my list thing (in the past he's forgotten William's toothpaste or PJs or little things like that). BUT HE'S A GROWN-UP. And claiming the chaos of the house on a trip morning does not cut it. Yes, it was an innocent mistake, and yes, he felt awful and would have driven back right then and there (9pm last night), slept at home, and come back early in the morning, only to miss sleeping at the hotel, so full points for taking responsibility and being 100% willing to fix it. But still!! Avoidable. And I was so pissed last night. I somewhat bitchily (and I'll apologize later today for that) took control, called the doc, spoke my mind to Ed about it, and then asked the girls to get dinner ready while we talked/planned/waited for doc to call back. The doctor said don't worry about missing two doses. There won't be a medical consequence, and there won't be a risk of him being kicked off the trial. So the end of the story is that nobody's driving back home to get the meds, and Ed will get two mornings of sleeping in a bit, plus no shots and no resulting dizziness. It will be an unexpected gift, and we'll use the opportunity to see how he feels without the meds, so we can tell what side effects are short term from the shots and what's long term from the whole treatment plan. I'm no longer pissed (other than reliving it through writing this). This is the first time I've been really mad at him for something cancer-related. Oh, and my alternative plan if the doc said yes go get the drugs, was for Katie to meet me halfway (1.5 hour drive for each, or so, depending on traffic) with the drugs from my house, and we'd have breakfast together (with Benjamin) before each going back. She was more than willing to do it, and Ed was very grateful for that, and expressed it. I would have made the drive in a heartbeat if the doc said to, so Ed wouldn't have to miss any of the trip with his kids. (and before making the final decision, I confirmed with him that he was comfortable with what the doc said -- if he'd still rather have the meds, I would have gone.) End rant. It's been a few months since I've posted here. It's hard. It's hard to find the time. It's hard to know what I really want to say. It's hard to feel like it's okay to be writing this. The things I thought I would post about when I created this site are things that I still have not posted about.
Here's a factual update: the immune-therapy trial that we (I typed "we" and then changed it to "Ed" and then changed it back. I'm not in the trial, but the trial is my life now) started in January is doing its thing. It seems to be working! That's a very, very good thing. Ed's tumor is stable, not growing, not multiplying. There are no new tumors, and nothing is moving out of his lymph nodes. This is wonderful! It's not shrinking, though, not yet. I am still very hopeful, though. On the other hand, he has side effects every day. Pain every day -- not awful, he calls it a 3 or 4 most of the time, but sometimes it gets worse, especially when it's related to his very frequent constipation. So every day is about managing his pain, managing his diet and constipation treatment options, and managing our time. But he still works full time (from home at least once a week, thank goodness), raises his kids, helps me entertain, goes on date nights with me, etc. He'd like to get into the garage again, or get shit done in general more than he does, but he has limited energy -- thyroid side effects make him tired and sometimes cold. He's on another med for that. I've started going to the local cancer resource center for their caregivers' support group. It's been good -- sometimes, as they say, I need the group and sometimes the group needs me. It's good to feel like I'm not alone, but that's depressing, too. It's good to hear from those who have experiences like mine, but that's depressing, too. There's too much cancer in the world, even right here in my area, and it's all ugly. But it's necessary to have this group, and I go every week now. I would like it to shift from updates about our loved ones' health to updates about what we are doing for ourselves and the struggles we as caregivers have. But it is what it is. It is what the group needs it to be. Non-cancer updates. There are many! Life goes on and life is very good! My older daughter got engaged!! I'm very excited and happy and can't wait to start planning a wedding with her. Of course I worry about timing...but I can't let that get in the way. It will all be okay. My younger daughter graduated college!! And she's starting grad school right away. Social work. She's in the right family for it, I daresay. My "stepdaughter" (I'm just going to call her that, even though Ed and I are not legally married...it's easier and the quotation marks looks stupid)...my stepdaughter went to prom, which was lovely to see and hear about. She's about done with sophomore year. And my stepson is about done with third grade. We're going to come up with schoolwork and chores for them to do over the summer. For her it will likely involve her Raspberry Pi, and for him, math, reading comprehension, and penmanship. My grandson is the best thing ever! He's 8 months old now and crawls! He wants so much to walk but just can't yet. He's starting to eat solid foods, but just barely -- still mostly baby food. My mother and I are keeping him overnight tonight. We're planning a few vacations this summer and fall, and I'm very excited. Next week is Wisconsin Dells. Later in the summer will be Saugatuck, Michigan. And in fall maybe an overnight train (sleeper car) to DC. Not sure how taxing a DC trip will be on Ed. He's more optimistic than I am, which is a good sign. Today is Saturday. I'm going to make pancakes, do housework, shop for pants, and do some other writing. Or at least that's my plan. Ed and I spent yesterday at the hospital -- it was infusion day. It was also EKG day, blood draw day, visit the pain specialist day, talk to the oncologist day, injection day (same as every day), and update the trial coordinator day.
Everything went smoothly. Ed's dealing with sleeplessness, pain, discomfort, fatigue, and digestive issues. All likely related. We got some information from the pain specialist, along with some stronger pain meds (than Advil), but so far he's tried them once (tonight) and I'm not sure they are doing much. We'll see how he sleeps and feels in the morning. When we got his labs back, I looked at his CA19-9 and saw that they had skyrocketed. See that number above? Yeah, not good. But he mentioned that inflammation can do that (that high??), so we waited until doctor time. As it turns out, he was right. Ed's doctor said that because the meds are affecting his immune system, inflammation is the first thing expected. And because Advil was helping his pain, that means the pain is at least in part caused by inflammation. And all of his labs are pointing to inflammation. And even the CA19-9 being that high can be caused by inflammation. Inflammation = good! It is a good sign that the new drugs are doing what they are supposed to be doing. I almost burst into tears of happiness and relief right then and there. But I waited until we were alone in the therapy bay again. I'm so thankful for some good health news. I'm even more hopeful than I was before, and I hope this helps how Ed feels in general. We still have the pain to learn how to manage, but we will. I'm determined. Who is reading this? My stats indicate that someone other than me is reading, but I don't know who. I'd like to -- part of me wonders if Ed found this blog. It's not really a secret, I guess, and I've connected to this through LJ. And mentioned it on the bbs, I think. But I'm not sure how Ed would feel about me writing about him. I need to get it all out in black and white though. If it's you, Ed, let me know. I'll respect your wishes with regard to this -- I'll lock it all up and write 100% privately if you want me to. As it is, nobody's really reading but maybe a bbs or LJ friend or two. I think. If it's not Ed, please let me know with a comment or other message or do the "contact form" thing, please? Maybe it's just web-crawling spiders or whatever they are called. :P After meeting with the cancer board, Ed's doctors have agreed that he should be looking for medical trials. There are trials all over the world, but only some of them are appropriate for him (meaning he's eligible, the drug might help him, and his participation might help the trial).
As it turns out, there is a medical trial happening at U of Chicago, where Ed has gone for most of his treatments and tests. It's a two-drug trial, Durvalumab every 28 days (an infusion drug that has recently been granted the "Breakthrough Therapy" designation by the FDA for other types of cancer) and another drug that he injects every morning (I'll have to look up the name of that one). Long story short, he has started the trial, and this means that he's done with chemo. Does this mean he's done with it forever? If this trial doesn't work, can he go back onto chemo? Does that makes sense? Do the benefits outweigh the side effects? Not questions I can answer. The answer possibly being "no" scares the shit out of me. But for now, he's on the trial drug, and it's been seeing promising results for other cancers, so it might show good results for Ed. So far, he's had his screening visit, plus the first drug visit, plus a blood draw the next day. In two days, we go back to the hospital and he'll talk to the trial coordinator (Emily) and they'll take some blood, and his do his injection, and he'll get more meds for the next 14 days. At that time, they'll do more tests (EKG, scans, blood tests), and he'll get his second infusion and more meds for home injections. At the first drug visit, they handed us his blood test results. His CA19-9 was 656. Rising steadily. But that was before the new drugs. I think we'll know more on Tuesday, if we get the blood test results back quickly. We might not. Side effects are minimal so far -- some gut pain, dizziness, pain at the injection site. He's taking more OTC pain killers than he's used to and I think that fucks with him. Getting anywhere near the point where he has to constantly manage pain, where Advil is a regular part of his day because it has to be, well, fuck that. He's upset. I continue to choose hope, I try very hard to reduce his stress in general, and I remain unable to really write about my feelings. That's okay. |
"Getting over a painful experience is much like crossing monkey bars. You have to let go at some point in order to move forward."
~ C. S. Lewis About meI am struggling with a lot of change in my life right now -- some good, some bad. Sometimes I feel alone, lonely, angry, sad, frustrated, and guilty. But I'm also, very often, happy, excited, peaceful, content, understanding, and blessed... Archives
February 2018
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