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sweet and sour stories of life, love and little ones

Updated: 2018-03-05T13:51:13.966-06:00


Emilie’s Passing


Emile passed away in her sleep last night. I was holding her hand as she faded away. I loved her and will miss hear dearly, but I am happy to see her free of the pain and suffering. The services will be at the Basilica of St Mary on Monday, December 29th. Visitation is at 11:00 AM and mass will follow at Noon. Emile wanted me to share the following quote after she died.

"And did you get what
you wanted from this life, even so?

I did.

And what did you want?

To call myself beloved, to feel myself
beloved on the earth."

— Raymond Carver

Post by Stephen Lemmons

the next ... and probably last ... chapter in my life


I have put this post off for a couple of days because there were important family and friends who needed to know first. And honestly, as Steve and I process the latest news, me all looped up on narcotics pain-killers, I have been at a loss for how I will write about it here.

So here it is: As of yesterday, I am officially in home hospice care. It is time for me to start preparing to die. It's so surreal. We're still trying to work through the many emotions that come from this news — sadness, fear, worry that I won't get everything done in time. And yet, there's also a sense that this final part of my journey might perhaps be one of the most amazing and spiritual times of my life.

Dr. S said the tumors in my right lung look worse — that "most of my right lung is occupied by tumor and liquid associated by the tumor." The tumors have also pushed my liver inward quite a bit. He said he didn't think any more could be done with chemo or surgery or radiation, and in the end, I think both he, Steve and me were on the same page.

Home hospice has already come in and set up a hospital bed in our room that makes my sleeping much more comfortable. In fact, I'm floored by the helpful, compassionate attitude that comes with this program. I never wanted to die in the hospital, and hospice will enable me to die surrounded by my loved ones in my home. Steve has always supported me in this, and I am so grateful.

I'll write more later. Right now, I need to go rest. Meanwhile, I will leave you with the link to my latest Catholic Spirit column, which came out in yesterday's issue. It's what's been on my mind for the past week and a half, and had I not written about it for the Spirit, I'd have spent quite a bit of time reflecting on it here. Enjoy.

more lung trouble


I spent most of yesterday at the doctor's and the outpatient section of the hospital. It turns out I have more fluid in my right lung (more than last time), which means more collapsed lung, which explains my breathlessness and pain in my chest and back.

Unfortunately, the fluid is compartmentalized into different pockets of my lung. The doctor originally wanted to drain a little over a liter, but he ended up getting just about a third of a liter. He wasn't sure what to do about the other sections, as the consistency of the fluid was unusual.

So I did get to go home last night (after a PET-CT scan which was already scheduled). I don't feel a whole lot better, but I see Dr. S. tomorrow, and maybe we'll learn more.

a small miracle


Last night around midnight, I was lying in bed on my back, groggy with Vicodin, trying to fall asleep. Suddenly, in my right lung, I felt a strange little flutter, like a bubble had burst. And then ... a rush of cool air filling the lower part of my lung, the part that has barely been working, keeping me from being able to breathe deeply.

I slowly inhaled and realized that I could take a very deep breath with no pain. I lay there for 20 minutes or so, just breathing deeply and wondering what on earth had happened. Was it my acupuncture session yesterday, where she focused on my lungs and my breathing? The acupressure point around my sternum that I'd been rubbing all day? Strangely enough, in my groggy state, the first thought that popped into my mind was, "It's the collective power of all those prayers out there!" (So thank you.)

This morning, my breathing is as deep as ever. I still have the cough and get winded easily, but I'm not quite so breathless. Unfortunately, though, I am more lightheaded than ever. I am worried about that. Maybe it's my low hemoglobin level? And this morning, when I'm sitting up, there are parts of my back and shoulder that do hurt when I take big breaths. But I'm still buoyantly amazed that my lungs have decided to give me full access to air for the first time since the hospital. That is something!

how am i doing?


It's easy, when people ask, to say, "Fine," or "OK," or "Not too bad," and I suppose in social situations, those responses have to do. But in a nutshell, I'm really not doing all that well. I haven't been since I got home from the hospital.I have had many moments of resentment, bitterness, hopelessness, anger, negativity. When I mentioned this to Dr. S., his response was to offer to prescribe me antidepressants. It's such a medical response — more pills. "There's no reason you shouldn't be as happy as you can be," Dr. S. said in his always-calm voice, and I had to say, "Are you kidding? Can't you understand why a person in my situation right now might not be happy?" He just repeated the offer of antidepressants. I'd rather not go there for now. But I do think some counseling might be helpful. (Edited to explain: I am not opposed to antidepressants when they are the most appropriate treatment for depression, such as when it's clear there is a brain chemistry imbalance; but first I'd like to explore the possibility that my current frame of mind is situational, based on specific circumstances that I might be able to work through in therapy.)My right lung is not working very well, after what it went through at the hospital, and my breath is really shallow and fast. I get winded at the slightest activity — coughing hard, walking across a room, turning over in bed. The right side of my back aches so much that I have trouble falling asleep. I have a nagging, persistent cough that is triggered just by my breathing and sometimes takes the breath out of me. These breathing problems seem to be getting worse, but I'm scared to call the doctor about them because I'm afraid I'll have to go back to the hospital. Even if that's for the best.My hemoglobin level is borderline anemic, which may be one reason I'm so tired and lightheaded all the time.I have a PET and CT scan on Monday, and while it would be officially great to learn that the last round of chemo worked, part of me secretly hopes it shows it didn't work because then I won't have to do another round of it. It was so hard, so toxic. I am still not over it, and it was three weeks ago. I don't have much of an appetite, and certain foods just don't appeal to me anymore. The next round is scheduled for next week, but I don't want to do it before Christmas. I think Dr. S. will let me postpone it. But ...I'm hitting a wall in general when it comes to chemo. I just don't know how much more I can take. I am not a person who associates chemo with positive, tumor-killing thoughts. I saw it described in a recent newspaper article as "the scorched earth policy," and that rings true for me. I've had seven rounds of poison, and so far, it's only had minimal success. Stopping growth (or shrinking it, in one case) for a round or two but ultimately letting more new tumors slip through — tumors that are resistant to that particular form of chemo, so on with the next cocktail.If this round is found not to have worked, the next option is Sutent, a pill form of chemo. It's been on the market for about two years, originally approved after showing success with gastro-intestinal cancers. I don't know how much success it's had with sarcomas. Meanwhile, it sounds pretty toxic. Can I handle it?I have had moments when I just want to stop all treatment and lie down and let nature take its course.And of course, that makes me feel like a bad mother, a bad wife. Who would willingly give up on her family like that?But then I watch a silly-sweet movie like The Holiday, where Jude Law is a widower with two young girls, and he finds love with Cameron Diaz after thinking he'll never find love again, and it gives me this naive hope that maybe things will work out without me, that maybe I don't need to be so resistant to dying, if that's what the cards hold for me.And I think about Matt Logelin, a flesh-and-blood widower, not some movie character, who is suffering so greatly but also surviving and, in [...]

cool stuff


• Snow in New Orleans — wow! Check out a couple of cool pictures on Ray Mikell's blog. He's the friend who sent me a couple of funky wigs last summer.

(image) • If you've been following Matt Logelin's blog, you may have done the math and figured out that his adorable daughter Madeline is just two days older than our Benjamin. And now she's standing! Way to go, Madeline! (No pressure, Ben.) But that's not the real reason to check out his latest post. I'm just so impressed at how people who are strangers to each other have come together to fund this worthwhile charity in memory of Matt's wife, Liz (who died completely unexpectedly the day after Madeline was born, if you haven't been following his story).

i'm free


A nurse from Fairview Home Infusion pulled my PICC line out of my arm today, so for the first time in nearly six months, I have no catheters or any type of tube or device hanging from my body. I can submerge myself completely in water. I can take a shower without having to cover part of my body with protective plastic and tape. I don't have to inject heparin into my lines every day to keep them from clogging. I can take Benjamin into the bathtub with me again!

I wasn't originally going to have it pulled. The dressing covering it had come loose overnight and had to be replaced. While I was rummaging around for some supplies, the nurse noticed that the tube had slipped out a few centimeters. (I had failed to press it against my skin after he took the adhesive off.) That pretty much decided it. "Just take it out," I said. We called my oncologist's office to make sure it was OK, then pulled it. I didn't feel a thing.

Yes, this means I'll get extra pokes for IVs and blood draws, and I may have to get another PICC line if I have another round of chemo soon. But Merry Christmas to me ... this feels good.

ben, this morning


Just because.


presenting the incredible mr. d



laughter and strength


A couple of people have directed my attention to a book of cartoons entitled Cancer Made Me a Shallower Person: A Memoir in Comics, by Miriam Engelberg, who died of breast cancer in 2006. The title alone makes me smile, and the cartoons (at least the ones I've seen here) make me positively cackle.

In a week when a positive attitude has seemed as far out of reach as the moon, it's heartening to see someone poke fun at the tendency people have to describe their cancerous loved ones as being so "full of life." A caption showing two people standing over a coffin reads, "You'll never hear these comments at a funeral ... 'I still can't believe it. She was so blasé about life!' 'I never met a more lackluster person!'"

I wonder if she skewers the whole notion that cancer survivors are somehow stronger than the rest of us. That one gets me sometimes, when people tell me, "You're so strong. You'll get through this because you're strong." Well, no. I am not strong. I cry over my breakfast cereal like the weakest ninny. I feel sorry for myself. On bad chemo days, I spend nearly full days in bed sometimes. I alternate between hating God, not believing in God, hoping God can carry me through this and shamelessly begging God to let me live. I do what I do because I have no choice in the matter, and so would anyone else. I get through the day not because I am especially strong but because there is nothing else I can do.

Do I draw upon reserves of strength that most people don't have to tap? Maybe. But I think of other people who have undergone tremendous ordeals in their lives: losing a sibling, losing parents, losing a child, having one or more miscarriages, not being able to have a baby at all, having multiple sclerosis, having a marriage fail, having no luck finding love, struggling with depression or alcoholism, losing a home or a family in the midst of war. I think of what Steve is going through as he watches me try to cope and contemplates a life without me. Everyone bears crosses. Everyone has to summon up some extra strength sometimes. My ability to endure this cancer does not make me any more remarkable than the next person. I am just someone who is sick and trying not to let it beat me down, even if some days it does feel like it's beating me. If strength is trying to live my life in spite of how much I hate what's happening to my body, then maybe I'm strong. But I happen to think the will to live is part of the human condition. If I'm strong, everyone is strong.

I have to admit, though, being able to laugh at something as nasty and unfunny as cancer makes me feel a little stronger. So I'm definitely going to add this book to my list.

(Edited to add: There have been some interesting comments here, so if anyone wants to continue this discussion in the comments section, please feel free.)

black friday black


I usually try to avoid the shopping crowds on Black Friday, and yesterday was no exception. (It was all I could do to drag myself to a doctor's appointment, even with someone else driving.) But I did spend $19.99 plus shipping on Amazon. I've got a little thrill of excitement about this purchase: a black photo backdrop. I was thinking I'd try to take Christmas photos of the boys this year for Christmas cards, and I wanted to try both white and black backgrounds. A bedsheet should do the trick for white, but I didn't have anything black (like a tablecloth or curtain). This muslin sheet was originally priced at $150, so either I'm getting a really good deal or I'm getting ... well ... $19.99 worth of cloth.

Now, if I can just get the boys in the mood for an onslaught of photos. They don't have to worry about me wrapping tinsel or Christmas lights around them. They won't be wearing matching Santa hats or clever little red satin suits. I'll just be glad if I can get something decent in time to order cards — which may be harder than I think, given my sluggish energy level at the moment. But I think it will be fun, so I'm looking forward to it. And that says something, considering the downward spiral I've been on this week.

thanksgiving day


Today was a hard day, I won't lie. It was so nice to be with Steve's big family and watch them play with Daniel and Ben, and my appetite is back enough that I could eat some of the food on my plate. But just going anywhere, being up for that amount of time, is physically and emotionally draining. There are moments when the world starts to spin around me and I can barely pay attention to what's going on around me.

But I did laugh today: I didn't recognize my beautiful, teen-age niece because she'd changed her hair and just ... well, looked so different. So I was sitting across the table from her, making a feather hat out of construction paper, and I figured she was the family friend my sister-in-law Sue had mentioned might be coming. I said, "Hi, I'm Emilie. I think we've met before." She just smiled, bless her heart. What do you say when a brain-addled aunt introduces herself to you like you haven't seen each other at every family gathering and had dozens of conversations? Later, when I realized who she was, I was so embarrassed that all I could do was laugh. It felt good. I haven't laughed like that in quite a while.

But then I go back to a place that feels dark and lonely. I have been having trouble shaking it since my hospital stay. I wonder if there's such a thing as post-traumatic stress disorder for hospitals: I have flashbacks of the lack of privacy, the nurses who wake me up to check my vital signs, the people from the lab who come to draw blood like vampires first thing in the morning, the long gurney rides through the cold hospital corridors on my way to have a needle stuck into my lung or my chest, the loss of control over everything. It keeps me awake at night, and my dreams are fraught with IV lines and the vampires from the Twilight series. It was horrible, and I wish I could reassure myself that I won't ever have to go back, but the fact is, I might have to go back. That is the nature of this illness. And it seems to be on a downhill slide, at least for now. And that petrifies me.

And we get home, and I find a piece of mail I didn't see yesterday, and I open it, and it is a card and a prayer from a priest friend. It has exactly the right words, words that give me hope that maybe I can pull myself out of this place.

I escape tonight, partly, by watching Daniel become enchanted by The Sound of Music. From the opening shots of the majestic, snow-covered Alps — "I could climb up those!" — to the poignant strains of Edelweiss sung on the stage the night the Von Trapp family flees Austria, he loves it. (Meanwhile, I am a teary-eyed wreck. Oh, the nostalgia!) He just doesn't like it if there's too long a break in the music. "I want more songs," he says during plot-building bits of dialogue. And good thing for him, The Sound of Music has plenty of songs! I'd love to find some more old movies he might appreciate, even at the tender age of 2. We already have Mary Poppins. Any more ideas?

sex at the ball game


While I'm writing about news items, did you hear about the man and woman who got caught having sex in a public restroom at the Minnesota-Iowa game?

The latest is that this woman — who is 38 and married — says she has no memory of the event because she'd drunk too much wine before the game. She didn't know the man in question. I am trying to imagine the chain of events that must have led her and a stranger 12 years her junior to get it on in a restroom stall, loudly enough that people gathered outside the door to cheer them on. If it had happened at a private party or fraternity back room, she'd have had to nurse the dirty little secret on her own. As it is, she says her life has been ruined. She's been fired from her job, and I can only imagine what that ride back to Iowa with her husband must have been like. How humiliating. How sad. And yet ... how titillating, the stories of other people's lusts and frailties. There's a reason this is the most-e-mailed story on the Pioneer Press Web site today. Probably the same reason I posted it on my blog.



Sometimes I read the obituaries, scanning them for unusual causes of death or people who led interesting lives but were never recognized in the newspaper until their deaths.

Today my eye caught a headline about an 18-year-old girl named Jenna Lynn, who died of sarcoma cancer. She died at the same hospital where I'd spend the past week, on Monday, the day I went home. We were probably on the same oncology floor. I might have walked past her room on my way to the lounge. The nurses who checked my vitals might have been with her at the moment she died. I am sad and sobered at the thought that on the day I went home, another young soul was going to her ultimate home.

It's Thanksgiving, and I'm more thankful than ever that I am here with my family, and that we have such wonderful support from our friends, family and strangers who feel like friends. Happy Thanksgiving, everyone.

happy eight-month birthday to ben


Steve and I were talking the other night about the fact that Ben has been in our lives for about as long as the cancer has. He was conceived a couple of months before I got my first diagnosis last year, and he was born three weeks before I learned the cancer had spread.

In that time, filled with such darkness, he has been like a little shining light. It's remarkable how his personality has been so happy and good-natured. For every bad development that happens with my health, it seems that Ben adds an element of happiness we so sorely need — a ready smile, a look that says "I'm so happy to see you." It's as if God sent him to us as a counterbalance, knowing we'd need some light in the midst of our dark.


And here's his cute brother at eight months.



The house was quiet and tidy when Steve brought me home yesterday afternoon. His sister Sue was watching the boys for the day, and Daniel was napping in our big bed.

I felt tired, so I decided to go slip into bed next to Daniel. I didn't wake him up, and soon I drifted off. We napped together like that for a little while.

Then Daniel stirred and opened his eyes. He looked at me, and I looked at him, and I said, "Hi buddy. It's Mommy. Mommy's here. I'm so glad to see you."

Still drowsy, but clear-eyed, Daniel sat up and asked, "Where's Sue?" We called for her, and she came in.

"Hi Daniel," she said. "Can I get something for you?"

"I want Sue to see Mommy," Daniel said.

I thought my heart was going to sing.

After a minute, he lay back down and went back to sleep.

my week in the hospital


Here's the Cliff's Notes version of all that transpired between last Monday and yesterday:

• I checked into the emergency complaining of shortness of breath and pain in my right side.

• I was diagnosed with a blood clot in my right lung and fluid build-up around my right lung.

• I was put on blood-thinning medication to prevent future blood clots and will stay on some form of that medication for the life of the cancer (likely for the rest of my life).

• I had one liter of fluid drained from my lung. A chest x-ray showed there was still plenty more in there, so I went back the next day and got a chest tube put in the back of my ribs (ouch!), which drained another one-plus liter.

• A set of scans Thursday revealed that more tumors have grown in my lungs and in the chest cavity outside my lungs. (After the scans, they took out the chest tube.)

• I had a round of chemotherapy for the new tumors.

• I had a blood transfusion for anemic-level hemoglobin counts.

• I went home Saturday.

• The hospital discovered I'd developed a bacterial staph infection and called me back. (Note that I tested negative for any such infection when I checked into the hospital Monday, which means I developed it sometime during my stay.)

• I started a round of antibiotics for the chest infection.

• My Hickman catheter was removed because doctors told me there's too high a risk that clumps of bacteria will stick to the plastic and not come off.

• A new PICC line was placed in my arm so I can give myself antibiotics at home.

• I came home yesterday afternoon — exhausted and trying to remember the barrage of pills and shots and antibiotics I have to give myself.

A fellow St. Paul sarcoma survivor sent me an e-mail the other day, and I hope she doesn't mind my printing part of it: "I feel your emotional rollercoaster, too, for I have received bad news too and it is a slap in the face to say the least until you can find that place that puts you in the “new normal” but you do not want to accept that place."

The new normal. That phrase has been sticking around in my head since I read it. It's so true. I hope I can get used to it soon. Right now it just makes me feel so excruciatingly sad.

Meanwhile, I'm trying to reimmerse myself in the comforts of home life. It'll be easier once the chemo nausea wears off and I can eat normal food without blanching at the thought of it. Steve and the boys are the biggest comfort of all. They seem so bonded. I look forward to reentering that bond little by little as my strength comes back.

sunday afternoon


Steve brought the boys in today, as he did yesterday, and it was so good to hear Daniel's chatty chatter and see Ben's big grins. I think he's getting ready to crawl! He's getting good at lifting his butt into the air and scooting forward, as he did on my hospital bed. I missed seeing that progress in the past week, so it was a fun surprise. Both boys have charmed the nurses. Daniel says "hi" to anyone who comes into the room, and he likes to push the buttons that make my bed go up and down. He's getting better about staying out of non-childproof areas, and today I even walked with him down to the lounge so he could look at cars and bridges from his seventh-floor vantage point. He thought that was cool.

I am still at the hospital. We spent a good part of the morning going back and forth about plans, but the end result is that I am going to spend one more night here (to get another dose of antibiotics). Tomorrow morning, I am going to have my Hickman catheter removed, as they believe it is most definitely infected, and replaced with a PIC line inserted into my arm so I can be sent home for two weeks of antibiotic IV treatment to get rid of this infection. The PIC line will come out after the antibiotics are done, and I don't know what they'll use for my next round of chemo, which is scheduled for later in December.

I'm not too happy about these latest developments - shooting the breeze in the hospital for another full day with nothing to do but wait for a round of antibiotics tonight, losing the convenient catheter that I've been so careful about maintaining for months (and that has allowed me to avoid many an arm poke for blood draws). I'm not happy about it, but I don't want to dwell on it today. This whole week has taxed my spirits and scared me a lot, and I need to find some way to breathe back some positive vibes.

I really want to say thank you to all of you for your support. I don't know some of you in person, but I do feel like I've gotten to know you through your blogs and our shared experiences. (Card Blue and L, and Josh, and other sarcoma bloggers especially.) I am offering up Thanksgiving prayers for you all week.

will this nightmare never end?


So I'm home! Yay, right?

I was home for maybe a half hour when a doctor called. They'd just missed me with this news: My latest blood culture showed an infection for something called gram-positive cocci. I probably got it through my Hickman. What's interesting is that when I was tested for this on Monday night, it was negative. When tested last night, it was positive. So I must have gotten it sometime during my stay in the hospital.

Here's some info from the Internet: Many gram-positive cocci are commensal organisms that cause infection only when they find their way into normally sterile areas. They are the most common cause of skin infections and a frequent cause of pneumonia and septicemia. Although generally susceptible to a broad range of antibiotics, certain strains have developed resistance to every available antimicrobial agent.

And can you guess the name of one strain of gram-positive cocci? Yes ... MRSA. We don't know that's what it is, but the fact that it's a possibility does not sit well with me.

This &%$#ing sucks.

What sucks more is that I have to go back to the hospital now and get an antibiotic through an IV. If it weren't the weekend, I could maybe do it outpatient, but I need the antibiotic infusion twice a day. Maybe ... I come home again tomorrow? I really hope so. My heart is breaking at the thought of leaving this warm, lovely home for another night (at least) at the hospital.)

I am just beyond angry about this. I really believe I picked up this infection at the hospital. Do I have any legal recourse here? Lawyers, please let me know.

i'm going home today ... hopefully


I'm sitting in the seventh floor lounge that overlooks the Mississippi River. I see a light sprinking of snow on the paths below and a good number of crunchy footprints and - what are those? - cross country ski tracks, or parallel bike tracks? I've heard it's been very cold this week. At least the sun is out, at least, glittering on the river.

I waited a long time yesterday to get started on chemo. I'm kind of getting used to the waiting - or at least learning to expect it. They moved me to this floor sometime in the early afternoon, but my chemo didn't begin until about 10:30 p.m. Which was OK because it meant I could sleep through most of it. My night sweats were really bad. I had to change my gown twice, and the nurse changed my sheets once, because everything was so damp.

I can't go home right away today because now they've told me I have anemia, on top of everything else. My hemoglobin count has been in the 7 range for the past couple of days, which is pretty low. So before I go home, I'm getting a blood transfusion. I balked about this when I first heard about it last night, but I'm OK with it now.

They told me they'd be giving me the tranfusion "in the morning," but knowing how long things take to happen around here, I've got my lunch menu ready. I just hope I don't have to wait until 10:30 p.m.!

I talked to Steve again this morning, and heard Benjamin's cheerful, burbling laughter. Daniel sounded grown-up and happy when he said "Hi" into the phone and then started telling me there was snow outside. I asked him if he was going to go outside and play in it, and suddenly I was no longer top priority - he gave the phone back to Steve and started going for his shoes. Steve said Daniel asked last night if Mommy was out in the hall, and that got me crying again, big-time. I wish I'd never have to be any farther than out in the hall. I wish I didn't have to think about him ever having to lose me.

emotional friday


I am getting ready to get my stuff together so I can finally move out of this room. I'm not going home yet, though. I'm moving to the oncology floor from the lung and cardiac floor, where I've been all week. As soon as I'm settled in, they're going to start a round of chemo.

Steve came over this morning, and we met with the doctors, and yes, I have more tumors. In my lungs and outside on the chest wall where the fluid was. One of them is bumping against the cavity that holds my liver. Ugh, ugh, ugh. This chemo is a new combination of drugs. I don't know how it will be compared to past ones, but I think I can say goodbye to my newly grown hair.

I cried. It's been an emotional morning. I don't know how to cope, so I either try not to think too hard about it, or I cry. I cried when I got into the shower to shave my legs for the first time this week and sprayed water all over myself. (Plus, it's just humiliating to sit in a shower all naked and stinky and have someone help you bathe.) I don't think the aide helping me understood. "It's OK ... we'll get you all wiped off." I finally blurted out the stuff about the cancer, and then she backed off, and I thought she was going to cry, too. And we got my legs shaved.

On the plus side, I got the chest tube out, which makes me feel 80 percent back to normal as far as breathing goes. I still cough a little and have some sore spots in my back, but I can get in and out of bed easily.

And Kiersten, our summer nanny who is now in medical school here at the University of Minnesota popped over after her class with cookies. We chatted for a while, and that felt nice.

I finished Twilight and have started the second book in the series, New Moon. Quick reading and fun for a long hospital stay!



Being in the hospital is stressful in so many ways, but one of them is trying to be your own advocate. Take this seemingly small issue: Ever since I got my Hickman catheter inserted in June, I've been instructed to flush the line or lines with heparin immediately (meaning, within about 10 minutes) after using it for something else (like chemo or blood draws). The heparin prevents the lines from clogging up. If they clog up, I'm screwed. I'd have to have this catheter removed and a new one put in, which would be a major ordeal. So I'm really vigilant about taking care of it at home, and I've been having to speak up for myself here because some nurses tell me it's not hospital policy to do that. (One nurse told me there's a shortage of heparin, so they're being encouraged to use saline locks if they plan to use the line again in a couple of hours.) Nonetheless, I want my heparin, and I want it now! I don't know how many times I've had to assert myself on this. And I always feel like I'm coming across as the "difficult patient."

So one of the nurses - a very nice guy, but we had the heparin discussion tonight - started talking to me tonight in what started to sound increasingly like a lecture about how we can't control the little things, and how sometimes we just need to let go and be calm. He said some other stuff, but by that time, my head was simmering, and I asked him to give some time alone (which is actually how I do deal with my stress). Of course there are many little things I can't control, and I don't try to. I don't complain when they wake me up every four hours to take my vitals. I try not to complain about the every-six-hour needle pokes for blood draws. I tried to be patient Tuesday when I waited for the better part of the day for them to tell me when they were going to drain my lungs. This chest tube has hurt so badly, but I've been trying to be a nice, patient patient and to thank people for the things they do for me, etc.

I need to be able to take charge of certain small things that affect my care - but I'm well aware that I am "not very healthy right now" (as the nurse put it), and that the biggest things are things absolutely outside my control. Like the results of tonight's PET and CT scans, which I should hear tomorrow. I am dreading them with all my heart, ever since Dr. S. told me this morning (woke me up standing at the edge of the bed - freaky!) that he thinks there will be more tumor growth where the fluid was. If that turns out to be the case, I don't know how I'm going to bear the news. So far, I feel like I've been managing not to sink into a mire of hopelessness. If I find out I now have a new slew of ugly tumors growing inside my lungs - if things are taking off faster and faster, what then? It overrreaches my tenuous hold on coping with cancer. It makes it harder for me to trust in my body or to believe that my body will carry me through more and more time.

This week has thrown me and my spirits in ways I never imagined when I checked in Monday. Of course I have to take care of my damned catheter. I can't let go of everything. That would be giving up completely.

still in the hospital


So the good news is that they drained about a liter of fluid from my lung last night, and it didn't really hurt, though the pressure was a little uncomfortable at times, and I was back in my room in time to meet room service delivering my dinner of cheese tortellini, chef salad and chocolate pudding.

It does take some of the pressure off, and my breathing is easier, and the pain is less. But there's more fluid in there still - maybe close to another liter. The interventional radiology people (a.k.a. lung drainers) said it's dangerous to drain more than one liter at a time, that it can actually kill a person on the spot.

So where does that leave me? One problem is that the fluid obscures the view of the part of the lung it covers, so it's been impossible to see the big tumor that we've been talking about for radiation. I saw Dr. S. (my regular oncologist) this morning, and he said they'd like to try to drain the rest of the fluid out of me slowly so they can get a clear look. This might involve getting a tube inserted that hangs out of me and lets the fluid drain out slowly, over the course of days. And for the longer-term, we may put radiation on hold; depending on whether the fluid tests malignant (which I suspect it will), Dr. S. thinks it might be a good idea to do some more chemo instead of radiation at this point. Sigh.

I feel overwhelmed this morning, and homesick. I'm getting an inkling that this might be more complicated than I'd originally thought when they checked me in Monday night. At that point, I figured this would be in and out - take care of the blood clot and the fluid and let me go home. Now who knows how many days I'll be here?

I miss my boys so much that the sounds of their voices over the phone brought tears to my eyes this morning. (Steve brought Daniel over yesterday, and it went fine until he got bored and decided to show us all the ways my room is not childproofed!) People are calling Steve and offering to help in whatever ways they can - meals, time with the kids - and I really appreciate that. Thank you, everyone. I feel as if I'm in a little parallel universe over here while my real life is continuing at home. Of course this is my real life, here, in the hands of doctors and nurses and aides and people who wake me up at all hours of the night. But on the plus side, I have time to read (I've started Twilight, the first book of the vampire series) and watch TV and occasionally get online here, so I probably should appreciate that.

Breakfast just arrived, so I'd better go eat it before the coffee gets cold. Thanks, everyone, for all your support.

another bump in the road


I was so winded during playgroup today, and worried about it, that I called my oncologist's office and reported it. They immediately told me to go check into the emergency room. Turned out to be a good move. I have a pulmonary embolism (blood clot) on the right side of my lung and pulmonary effusion (fluid buildup between the lung and the outer wall of my body) on both lungs. So they've admitted me to the hospital. They've got me on a heparin drip (a blood thinner) to address the clot, and tomorrow they'll apparently drain my lungs. Yuck. The fluid is something that sometimes omes back with cancer patients, so I've got that to look forward to. I'm still a little winded, and my heartrate has been so high (140s and 150s) that they gave me a shot of something to calm it down. It went down for a few minutes, but as soon as I got up and sat down at this computer (which is at the end of my bed), it started jumping up again. I think I'll go to bed.

I've cancelled the Cyberknife appointment for now. Please keep my in your prayers.

more pain, more decisions, more waiting


I think the big tumor next to my spine is growing, and I'm scared. All week I've had what feels like a muscle ache in the right side of my back, spreading around to the front of my ribs, and it's getting worse. It's the tumor that kept growing during chemo; and, since I haven't had any chemo since early October, I wonder if that withdrawal is freeing it up to grow faster. I know the tumor is sitting up against a muscle, and I think it's irritating it more and more. It hurts to take a deep breath, to cough, to sneeze, to bend over and pick something up off the floor. At night, I can't roll onto my side — either side — without pain and shortness of breath, even with Vicodin. Even with two Vicodin. Ibuprofin helped get my hip under control, but it doesn't seem to be doing too much for this irritated muscle, except maybe take the edge off a little.

I'm supposed to be getting radiation on this tumor, and I would have started the set-up process Thursday, but that's been delayed while I explore another option besides the conventional radiation Dr. C. would be offering at the University of Minnesota, where I go for my cancer care. This other option is called Cyberknife, and it's supposedly a more focused, targeted form of radiation that would take less time and have fewer side effects. It's only offered at St. Joseph's Hospital in St. Paul. I have an appointment there Tuesday and then will decide whether to go that route. But it takes time to set up radiation treatments, and I'm worried about the delay in starting. Will they try to rush me into their schedule, or will they push it to after Thanksgiving? I don't think I can deal with all this pain until then — and more than the pain, the uncertainty of how much this tumor is running amok inside me, what damage it could be doing.

Did I say how scary this is? At times, I have trouble keeping it together. Today, while I was standing over the kitchen sink, Steve asked me if I was OK, and I said, "Yeah." Then thought about it. "Actually, no. I don't want to be dying." Which probably was really melodramatic and probably isn't happening, but still — you never know how quickly these things can blow out of control. I just wish there weren't so much uncertainty. It's so hard not to know.