I know she loved having this blog open to people to get information out as well as reading the comments that she got in reply. I will try to remember to post another update when all of this settles down and we figure some of this out. Thank You for all of your caring and understanding, we all know she will be missed greatly. R.I.P. Margaret May 1, 1959 --October 31, 2007 ¶ 12:53 PM 42 comments
Yes, it was Chemo Tuesday yesterday. I got the good techs this time who used small needles, and well-aiming chemo nurses. Those pesky veins are getting sneaky these days and want to hide, not that I blame them. Now I get to look forward to a week with no chemo! And you know that I do.
This chemo gives me a red face, a strange rash, a bloated, pregnant-looking belly (oh, relax!), fabulous fingernails, and fatigue. Fridays, Saturdays, and Sundays I literally sleep 13-15 hours a day (12 hours at night frequently), and I rest on the couch for the rest of the time. I’m also gaining weight. I told my doctor that I don’t eat enough to be gaining weight at this rate, and when he just looked at me, I allowed that all 40+ women say that, but when I recapped just what I do eat, he had to agree with me. He reminded me that fluid (in my lung, around my heart, in my feet), has weight and volume and perhaps that may be what’s showing up on the scale. Of course, he’s not concerned--he’s not the one who has to go shopping.
I still have swollen feet; I learned yesterday that it could be due to the chemo drug. One of the chemo nurses told me that every patient she’s had that was on the Gemcitobine gets swollen feet. Of course, the swelling could be caused by other issues as well, so we can’t rule anything out completely, but that info is good to have. I have noticed that foods with high sodium content tend to make it worse (surprise!) so I’m thinking that I probably should avoid them. Of course, that includes soup, most restaurant food, and all fast food. Guess I’ll have to survive on steamed chicken and broccoli. Huh. Guess again.
Since I can't put off the Mom and Dad update any longer, here it is: The scheduled procedure is healed enough to be at home, and doing very well. There is still a lot of rest and medicine to be had, which is frustrating (after all, once home, we should be all healed, right?). The illness has come home also, but I am sorry to report, has only gotten worse, and will not get better. Medicine will no longer heal, so it’s time to bring in home care and comfort. There are difficult days ahead. I am extremely grateful to V. and J. for all their help during this difficult time. If not for them, I’d be making decisions that I may be uninformed on or too sick to make. They have also been the advocates for my parents, making sure that they each got what they needed during their respective hospital stays, kept the house running, and kept people informed of progress and daily happenings. Saying “thank you” doesn’t nearly cover it, but it’s all I can do.
Thank you all for being here as well. I am still overwhelmed at the amount of support I get and very grateful to have it.
Remember Mom’s Advice
Today is Thursday and I’m at home, recuping after yesterday’s thoracentesis. Usually I go to work the day after, but yesterday was. . .oh, let’s call it “special”.
I took the Xanax so that I wouldn’t fight the surgery. Then I hopped into T.’s van so she could drive me there and back. Once we arrived, I signed some papers (could have been for the surgery or to have cement delivered, I don’t know), and then I was taken back to where the action happens. As usual, I changed into the hospital gown, hit the ladies’ room, and went into the surgical area. The procedure began and all went well for a few minutes. Dr. K. had the suction on “slow”, since my reputation had preceded me. So far, so good. And then the pressure began, along with the cough. And then I had to stop. So I told them to stop for just a minute so I could get a good breath, and maybe my chest would stop hurting. Dr. K. stopped –I actually felt him move away from me—and then in a minute we started again. For about 15 seconds. The pressure in my chest was too much, and I told them we just had to stop for good. So Dr. K. removed the equipment, and the very next thing I remember was lying on the gurney, flat on my back, confused and in pain. Well. This is new. “What happened?” One of the nurses sweetly replied that I’d fainted. With a smile on her face, she said, ”When you say that you’re ready to stop, you’re not kidding!” And we all had a laugh. Since I was in pain, I was trying find a more comfortable position, and realized that my pants were wet. Of course I had to ask. The sweet nurse kindly replied that when people faint, they generally do wet themselves. Y’all, I had peed all over myself when I fainted. No kidding. At least my socks stayed dry. And then I was offered some designer hospital wear (read: scrubs) for the ride home, for which I was very grateful. So y’all, there I was in pain, a puncture wound in my back, a cough, and wet from here down. Then, while those compassionate nurses were changing my pants, the nausea hit. Repeatedly.
Yeah, it was a special day, all right.
Eventually, I was able to withstand sitting up long enough for the nurses to get the rest of my clothes on-- yup, I’m over 40 and still can’t dress myself-- and wheel me out to T.’s van for the ride home. The nausea and vomiting continued until I could get some anti-nausea medicine in me. That stuff works! Then I was able to enjoy my dinner of
And as promised, I’m counting my blessings: Thanks to T. for driving me, going to the store, babysitting me all day long, and petting my lazy dog. Thanks to Dr. K. who stopped the procedure when I asked him to. Thanks to those kind and wonderful nurses who made me feel like I was no trouble at all even though I was. Thanks to all who called and thought about me during what was a difficult day. And thanks to you for being here, laughing and crying with me.
I know it’s been a week since my last posting. The truth is, it was a miserable weekend, and I didn’t even feel good enough to whine about it, which says something. Here’s what’s happening.
Since I still have Miss Piggy feet in spite of the diuretics, my doctor decided to schedule me for an echocardiogram, which is similar to an ultrasound, but of the heart. It’s not unpleasant at all: lie on the table, get some warm goo on the skin, and someone with a wand thingie (yes, that’s the technical term) rolls it around and generates pictures on a computer screen. My job was to lie there quietly. Sometimes the technicians would talk about what was on the screen (“See? That’s the mitral valve. We want a picture of that,”) and other times they were very, very quiet. Yes, I know what it means when they are quiet. I also know that they won’t tell me a darn thing. Once I left that office, I went home for some lunch, and debated as to whether or not to return to work. The phone rang, and it was the oncologist’s office. They had the results already, and wanted to know how quickly I could get over to Radiology for a chest x-ray. I was there in 20 minutes. (Sorry, co-workers!) Once I left Radiology, I headed over to Oncology because it’s Chemo Tuesday, and I hadn’t been pushed over the edge just yet. My oncologist was out of town so I saw another one in the practice. Dr. S. decided that since I had fluid around my heart, and fluid in my lung, there was just no need to add more fluid in the form of chemo, and wanted a thoracentesis performed today. As in right now, if the doctors could squeeze me in. After giving it about 2 seconds’ thought, I declined that offer. After all, I’ve been feeling this pressure for weeks now, what’s one more day? So thoracentesis # 6 is scheduled for Wednesday morning. Yes, tomorrow. And yes, I did get chemo today. But I had to fight for it. (Am I insane?)
All in all, it’s been a very hard week, physically and emotionally. During chemo weekend, I was exhausted, swollen, bloated, cranky, and developed an odd red rash. I couldn’t visit with Mom & Dad as often as I wanted to and that was frustrating. Talking on the phone is difficult for the three of us, so even when we did communicate that way, it was frequently more confusing than anything. The good news is that Mom and Dad are better, so that’s less stress. The illness finally has a name and is treatable, so it got treated and sent home. The scheduled procedure is in the customary rehab, and is doing very well. It’s hard for me to visit either of them; just walking to the door or down the hall is quite a strain and sometimes I just have to stop and rest. I swear, if it wasn’t happening to me, I wouldn’t believe it.
I promise that tomorrow I’ll be gracious and count my many blessings. But for tonight I’m just going to whine. Pass the cheese.
Yesterday was chemo Tuesday. Yup, it’s back to the once a week chemo. While I didn’t go back in kicking and screaming (no energy for all that!), I certainly was dreading going. I also got a shot yesterday since I’m just a tad anemic which would explain the constant fatigue even after no chemo for a week. So maybe next week I’ll have the energy to kick and scream, we’ll see.
Tuesday’s phlebotomist (the one who draws blood for the blood work), was excellent. She is so gentle that it’s more like a mosquito bite (ha!) than a hornet sting. The chemo nurses were also very gentle; the current problem is that my veins are starting to protest being stabbed on a regular basis. They collapse, roll, and just plain disappear from sight. So the nurses have to look, evaluate, and coax my veins to stand up and be brave. I wish I could encourage my veins, but I’m the captain of the USS Chicken, so no help from me.
Today, at least at this writing, I’m feeling pretty good. Better than I have in many days. It feels good to feel good. Oh, I know that it’s the lull before the storm, but I’m going to enjoy it while it lasts. I’m still taking ibuprofen, but not every 6 hours like I was before, simply because I don’t need it that often. Sometimes I only need it once a day. I’m still working half days, and still resting at home once I get there. Now and then I’ll do some laundry, because it’s easy to throw some clothing in a metal box, and then 40 minutes later, throw it in another metal box. But for the most part, I’m quite friendly with the couch once I get home.
Before I forget, I’ll update on Mom & Dad. The scheduled procedure went remarkably well, no surprises at all, which makes surgery easy for everyone. Now it’s over to rehab for physical and occupational therapy, and then probably home by the end of the week. The illness was quite serious for several days, but after a barrage of unrelated tests, the issue has been found and is treatable. Once again, it looks like the end of the week will bring that one home as well. So both Mom & Dad will be home, with live-in help, and I’m feeling pretty darn good about that. So, I say thanks to V. and J. for coming to stay with Mom & Dad. I’m very grateful. I’m also grateful that if all this hospitalization had to happen, I’m glad it was on my off-chemo week, so I could visit with them and stay updated.
I am still so very grateful for all the continued support that I get. Thank you all for keeping me encouraged in this ever-changing adventure.
I have to say that I am truly enjoying this week off from chemo treatments. Well, maybe “enjoying” is too strong a word. I can say that it sure does feel good when the beatings stop. There are still issues; they're just not as difficult to deal with.
My feet still swell when I forget to take the diuretic—it takes a couple of days to kick in, so when I miss a day, I have to wait for results. In the meantime, my poor feet look like balloon feet, and they are tender to the touch. Walking around is uncomfortable, but once I get up and get moving, it gets easier. And it’s not like I’m walking very far or very fast anyway. I still can’t breathe well, can’t walk and talk at the same time (could be a blessing!) and can’t carry anything over about a pound easily. I feel fairly certain that the next meeting with Mr. Needle is quickly forthcoming, but I have bigger fish to fry at the moment.
Yes, life really is like a box of chocolates.
¶ 11:00 AM 17 comments
It’s Friday night, and I’ve been quite lethargic all day, like I’m literally running out of juice. Because I am. The chemo eats up all the cells in my blood stream, good and bad, and I coast on whatever’s left. The best way to describe it is to imagine wearing clothing made out of lead. The clothes are heavy and hard to move around in, but manageable for short periods. As long as I just sit and don’t move, I feel pretty good. But when I have to get up (and you know that I do), it’s quite an effort.
So far, the biggest effect of this chemo is the fatigue. I have noticed some puffiness here and there, some achiness, an odd itchy rash, and some acne-like bumps on my face; all pretty minor things. The fatigue is the worst on Fridays, but by Monday, I’m much, much better. I still have my hair, and there’s something else: my eyelashes are thicker than they’ve ever been. Quite a change from a year ago when I didn’t have any at all.
Yes, it’s been over a year of living with cancer. And I am finally taking care of something that should have been taken care of years ago. I’m making a will. Eventually, I’m going to need it, so now’s a good time. Boy, what a lot of people to think about: the executor, the trustee, the power of attorney, the health care power of attorney. And these people should not be chosen lightly: they are the ones responsible for making decisions on another’s behalf. Mine, in this case, so I want those people to know my wishes and carry them out as well as they can. And then there’s the personal property to deal with. Honestly, who wants my music? My old paperback books? My pretty red plates? It’s funny (and you know that I mean not funny at all) that I thought that I didn’t have much, really; just a small houseful of house stuff—ordinary clothing, regular furniture and appliances, nothing classic or antique, it’s just stuff. But it’s mine, and I have to decide what happens to it. The lazy dog is no help whatsoever. We even had a conversation about it:
Me: So who do you think will want this jar of seashells?
Dog:
Me: What about my favorite coffee cup?
Dog:
Somehow I get the impression that as long as he gets the occasional doggy cheese snack, all will be right in his world.
I have to say, that a lot is right in my world, too, even on these rough days. I have family and friends who care, plenty to eat, a job to go to, and hope for the future. Not too shabby, I think.
