Today, the gals from Capital Cleaning are here for my Cleaning for a Reason session. They do a great job and I am going to hire them when my free sessions are over, otherwise the house will be covered with dog dust and male negligence. If you are in Sacramento and are looking for a housekeeper, please consider using them. My understanding is that these cleaning companies have to actually PAY the charity Cleaning for a Reason, and if I can help them recoup that money, I would like to do it. Tell them Ann Silberman from But Doctor I Hate Pink sent you. They'll know.
I've talked to the owners several times - they call ME to remind me of my free appointments. So they are amazingly caring; it doesn't get better than that.
Anyhoo, my dog Trista just turned one yesterday, and she's still is so excited about others coming in to the house that she buzzes around them like a fly around a sugar cube, so I am currently locked in my bedroom with the dogs to allow the ladies the ability to clean without a dog trying to help.
Cherry would sniff them and calm down, but Trista is so bad that she never leaves visitors alone. She actually sat on my 72 year old cat-loving uncle's lap when he came to visit. In case you are a new reader, Trista is a greyhound who weighs about 80 pounds, and if she stands on her hind legs, she can put her front paws on my 6'2" husband's shoulders. She is on the taller end of that breed, and reminds me of a skinny lady in stilletos. She insists on attention at all times from everybody, kind of like I imagine Kim Kardashian does. If she could get breast implants to make people look at her, she would.
I grabbed my laptop, so here are some random thoughts while I'm trapped in my beautiful bedroom, the dogs whining for me to let them out so they can attack the dangerous vacuum cleaner:
I used to participate in cancer forums but stopped for several reasons. One reason was that people kept dying, people that you know and talked to and liked. They'd suddenly stop posting, and anywhere from two weeks to a month later you'd hear they'd died. And, I would always think, "but I didn't realize they were that sick" and my next thought was "it could be me next."
Which was stupid, my God, the reason we were on the forum to begin with was we have terminal cancer. We are that sick, it could be me. You just can't tell in black and white and by reading posts how long somebody has.
I don't know what happened to them in the two weeks to two months of silence. Sometimes we'd see a post out of the blue "I'm still here but I've been in the hospital/sick/in pain/unable to write." Sometimes there would be nothing. Sometimes there would be a post from a family member saying "Please pray for my sister/wife/mother as she's not doing well but says she misses you all." Some died suddenly of chemo-related heart attacks, some of failed organs and some? Just plain cancer.
Those interim weeks/months are a mystery to me. I have read a lot about how people die of cancer and what happens physically, but those articles concentrate on the last few hours.
Nobody talks about the great decline that happens first.
We all have this fantasy that we will have used all our treatment options and have to face that it's the end and there is nothing left to do. We think that everybody will know when it's time, and there will be a parade of people in to say good-bye. You are weak but conscious, in your bed but aware, can turn the morphine off and on, and you can say "I love you" one last time.
But that doesn't seem to be the way it works for all, or even most. My first bout with c.diff taught me that one illness can take me in a few short hours. I was very close to dying from that disease and have never forgotten it. I was pretty much fine one day and nearly gone the next.
Cancer can take you at any time. If if is a slow decline, whatever cancer you have can cause some problems at the end. When it's in the liver it will cause a toxic build-up in my blood and I probably won't know anybody at the end, I'll be out of my mind, which many people think has already happened, har har. I certainly don't want people seeing me like that so, my friends, you are warned: my husband has instructions for no end-stage visitations. This is why I urge people who want to visit their loved one with cancer to not delay, as you may not have the time you think you do. Do it while they are still okay if you want to see them.
Many of you know I have been sick again. I have blogged my whole experience thus far, and I don't want to leave mystery, so I'll go into detail about how I feel, just like your grandmother when you ask, 'How are you?" and she starts to tell you about her bladder problems and how the hysterectomy she had in 1957 is causing issues. You are going to get it all. I mean, I am assuming you are reading this because you want to know what it's like to be nearing the end, so boring as it is, sometimes I have to write about how I physically feel while I am able.
Gradually, over time, pain has increased. I can feel my liver now, like a big soggy wet sponge lying in my body. Inside that sponge, is a burning hole, like a baby sun, that I imagine is the cancer. Livers aren't supposed to hurt until the cancer gets big enough to stretch the lining but it would seem my tumor is near some vital structures (which is why they can't ablate it again) that cause some pain. When I take a deep breath, I can feel the sun expand like a little nova. And, the regular, constant pain is like I was kicked in the ribs on the right side, an experience I haven't had since I was a child but remember well. Now, this is not major pain, it's not a super nova; I notice it, but it would not keep me from doing anything. It's just there, the kind that if you as a healthy person had you'd think "I need to tell my doctor at the next appointment" but then when were were on the exam table, you'd forget.
The pain that does bother me is whole body pain. I ache from head to toe, all the time. Probably from years of chemo. I take hot baths and dilaudid and oxycontin, and frankly, the baths do a better job than the drugs, although I'm not going to skip my medicine to find out. I should probably up my meds but I worry about getting used to it and it not working at the end. (I can skip days with no problems now if I am not in pain but addiction is not a worry of mine at this point.) Save 'em for when you really need them, is my feeling, so I take my regular pills and no more.
I can't expect to be pain-free anymore.
Because of the bone pain, I am looking forward to spring when I am not cold and I can sit in the sun. Probably with a fringed afghan around my hunched shoulders, my grey hair dully shining in the sun, my skinny little arms crossed as I hold the afghan closed. Late stage cancer is a lot like you imagine getting old is like.
I also have a lot of lower back pain, and who knows why this is? I do have osteodegeneration as do most people my age. Anecdotally, cancer patients frequently end up with back and hip pain post-chemo and naturally, they always think it's mets. But, it's usually post-treatment pain. It does go away but it can take quite a while. I am not "post chemo" and never will be, so I have to live with it. Even then, while it would limit some activities, like going to Disneyland or sitting for a long time (say on a plane or car), it is still manageable with hot compresses and pain meds.
More difficult: neither of my shoulders have healed from my frozen shoulder situation I got years ago after my mastectomy. Frankly, I don't think they ever will heal now. I get an occasional cortisone shot which eases up the pain and increases my movement but I still have trouble sleeping on my sides. I can only sleep on the right side, which might be a problem later since the liver is on the right. And, being unable to use my shoulders properly has caused my back muscles to tighten up too, so I can't sleep on my stomach without cramping. The whole shoulder thing has probably increased the rest of the pain.
I am nauseated most times although it's light nausea, like an early pregnancy. I don't feel in danger of puking - usually. Gemzar changes that and intensifies it as does some bad smells, but I've been too sick to get chemo for a few weeks so the nausea is down to "you're having a girl" levels.
I have no appetite at all. I used to be a foodie and now I don't care about food at all. I would not eat, if living alone, mainly because I'd forget. I have no hunger and in fact, I always feel full. I also have pain in my stomach, for some reason another little sun. And, I have some minor reflux, not the volcanic lava rush I got on Navelbine but a gentle acid wash that a tums takes care of easily.
I believe in family meals and we still sit down every night together. People are kind enough to give us food and maybe once a week I even have energy to cook. The rest of the time, my husband, who works until 6:00 and is missing the chef gene heats up pre-made meals from the grocery store when he gets home. When we sit down as a family each night, I usually eat. I have no desire for it but since we are there, I will take a plate and I manage to put some down. That has kept my weight in the 100 pound range which about normal for me although I lost 4 pounds with my latest illness.
I have almost no expense of energy so it doesn't take much to keep me from losing weight.
The worst is fatigue. I can't describe the fatigue I feel. It is nothing like healthy people tiredness. It is nothing like the fatigue I felt when pregnant, when I had the flu, or stayed up all night watching a Marilyn Monroe marathon on TV (or later, rocking a screaming baby). It is oppressive, this tiredness, like swamp humidity. I could sleep for 16 hours and wake up exhausted and after a cup of coffee, need another 16 hours. Because I have awakened, I force myself to get up and make my coffee but even that seems too hard these days. My body is physically weak and standing in the morning is hard, although I gain strength later in the day. I sleep hour after hour. I take Ritalin to keep my eyes open; without that drug I would be like Grandpa Simpson or your heroin addict sister, nodding off at special events, mouth open, a slick of drool appearing at the corners, eyes rolling. This is the symptom that keeps me from doing things. I am just too exhausted. I don't even dress most days. I have sweats I wear, those velour track suits (Juicy knock-offs) that you can wear from morning to morning - which used to be unthinkable for me, who had enough outfits to wear something different every day. Now I get dressed one day a week - chemo day. The last time we went on vacation, to Arizona, it was fatigue that kept me from having dinner with the family and doing things in the morning. I have about 6 good hours in me and that is it and these days, without Ritalin, those six hours are zero.
My interests are declining. I used to read the paper cover to cover. I now skip all the politics, most of the regional news. It doesn't feel relevant and I don't want to get annoyed at those stupid politicians. (I do live in California, lots of reason to be annoyed.) I read Dear Abby, Carolyn Hax, local advice columnists, and the funnies. Instead, I like to watch Andy Griffith and Duck Dynasty. TV will always make me happy, as will a good book although I usually nod off after a page or two now. Oddly enough, all my fashion magazines are unopened. I loved clothes and style. When my latest magazine arrived, well, that was just a good time for me. I'd pour myself a glass of ice water and sit for hours flipping through pages and looking at beautiful things and seeing outfits that I could put together out of stuff I had. Now, I have months' worth still in their plastic wrappers, unread. I no longer want to shop, because I go nowhere, and don't want to make people have to throw away even more of my junk later.
Shopping is no fun when you don't have a future. The fantasy that I can wear something cute is just gone, I am only about comfort and stuff not touching my stomach. I am trying to give away special clothes to people who can use them.
You may know I have been sick and I don't know if it's cancer or if it's another round of c.diff. I had some (TMI ALERT) loose, smelly stools and felt bad, a sign of c.diff and pretty impossible naturally with all the chemo and pain meds I take and the constipation that results. Let's just say that Senekot has been off my daily med list for a while. Then I suddenly was unable to get out of bed, my legs like a bowl full of jelly but not as jolly. I stayed in bed, barely awake for several days, even during the end of the Healthline contest and when Derek set up the other donation event. I have my phone in bed with me and bleary-eyed, I'd check in but the interest was gone. I was just too sick to care. I was fine one day and too ill to wake up fully the next.
Which I imagine is why the posting on forums stops. It just is not top priority when you are feeling that bad. Nothing is a priority but sleeping.
Without a diagnosis, which is a long story I won't go into except to say this time I tried to get the proper test for a diagnosis, I started taking vancomycin on my own volition. Again. Either it worked or I would have gotten better anyway. Either way, I got up and about again and went to the doctor. He was stone-faced, my oncologist. He didn't register any annoyance about my doctoring myself with powerful drugs like leftover vancomycin at all, which was quite kind of him as I bet he felt it. He just told me to finish the course and, like every doctor I've ever met, he would not guess what else could cause an illness like that, if it was c.diff or if it was cancer symptoms.
They must have a "Never Guess 101" course in doctor school.
I know I was a bad girl for staying home and treating myself, but my rule is I only go to the ER if I have a fever, and I didn't. Nobody wants to go to the ER, not even the mentally ill. And, frankly, I wasn't strong enough to get in the car and if they couldn't see me right way, I wasn't strong enough to sit and wait. I didn't want to call an ambulance and alert the neighbors. So I lay there. The one and only time I needed to go to the bathroom, my husband had to almost carry me, my legs were so weak. I truly thought that this could be it, the big "it" and I wanted to be in my own bed.
So anyway, clearly, I didn't die. I perked up on the vancomycin (or not), got out of bed, ate some yogurt and popsicles and seemed on the road to recovery. Then yesterday I went down again. Then I went up again.
So, who knows? My current condition is extraordinary tiredness, various pains, weakness in the legs, and that's on a good, regular day. On a bad day, I sleep. My husband has a hard time even trying to wake me.
So, maybe that is what these women go through before they die. Maybe the periods of staying in bed are more frequent and the periods of "health" lessen. Maybe not. Maybe they just don't post.
So there are my aches and pains, now don't you roll your eyes at Grandma!
Hope: There is good cancer news out there: the long-awaited TDM1 has been approved for late stage metastatic HER2+ women in which herceptin and a taxane have failed, which describes me and then some. It's new name is Kadcyla, which I'll never remember, having followed it as TDM1 for years. I asked my doctor about it a month ago, knowing it was about to be approved, and he said he'd put me on it as soon as it was available. I'm not sure that he knew the costs were going to be $100,000 a year though. We'll see if I still get it, and if I can benefit. It it works, which it does for about 1/3 of women, it gives a median of 9 extra months of progression-free survival, which is invaluable at my stage and might mean I can make it to my son's high school graduation, which is my goal. A goal which used to seem easy and now seems almost impossible. But TDM1 doesn't work for everybody and after my liver resection failed, as has every chemo I've been on, I am not going to get too excited. It is nice to have something new though, and apparently easier to take than the things I've been on and that is wonderful. I'm kind of sick of chemo and don't seem to tolerate it the way I used to.
Maybe with TDM1, I can back off this decline, even if for a short time. My nephew is having a baby and I am very eager to go see the newest member of our family when he or she is born. Right now, I simply can't travel, and I am sure they won't travel with a baby soon enough for me to be alive to see it. I'd also like to see my cousin's daughter's Bat Mitvah. I've never been to one and she is a darling child and it's important to her. I'd love to be there to support her. I was also invited by the City of Solvang to visit, more on that later.
But, I can't think about these things as they are amorphous, not reality for me (being hundreds of miles away each), dreams that may not come true.
Ah!!! The ladies from Capital Cleaning just left and my house smells so clean and fresh! It is so nice to have everything sparkling, even if it only lasts a day. My son came home from school and asked for an omelet and I had the strength to make him one. My friend Kathy had brought me homemade food so I have something to pop in the oven, and we will eat real food tonight.
Life is good.
Pain and Frustration
1 week ago