Janet's Blog

Tomorrow I will receive Adriamycin for the first time. This is the scary bright red chemo drug also known as the "Red Devil."

Either Lita is right and I am afraid for no reason--she says she has successfully treated a 90-year-old lady with Adriamycin--or the warning stories are true and it makes people ill, causes fatigue, and makes your pee turn red.

She did actually say something to me about whether I could possibly work half-time, which worries me. Why? Will I need to?

I hope I don't experience fatigue immediately. I am tired of being fatigued. I also hope I don't experience nausea. I have such a fear and horror of the whole gagging and spewing thing, that I can actually vomit from anxiety. I am a bit worried that I will work myself into a fervor that anti-emetics may not be able to deal with.

Wish me luck.

On a completely unrelated note, Brian lost a giant filling this weekend while eating gummi bears. So when I went shopping with my mom Sunday, I brought him some gummi ghosts and bats from Harry and David. He also ate some of the Moose Munch (original dark chocolate...MAN that stuff is good) I got for myself. He is going to the dentist this afternoon and joked that he was going to pack the cavity hole with caramel corn. I told him he could bring the tooth chunk to his boss as proof that he needs to leave work early.

At least it would have been a good way to get the tooth chunk off of our bathroom counter.

Labels: Adriamycin, anxiety, Brian, Lita, mom, nausea

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Last tuesday the weight of everything that has been happening came crashing down in a crushing implosion of fear, doubt, panic, paranoia, and just plain terror. I recall watching a show wherein one of the people being interviewed made a random comment about her mom having lost her battle with breast cancer at age 45. Ordinarily I would not have associated myself with such a comment. I would have paused for a moment, thought to myself, "How sad. That must be difficult to deal with," and then moved on. This time I couldn't forget that maybe someday soon somebody will say that about me. Maybe they will speak of my "courage in the face of adversity," or some equally sentimental blather. Maybe they will be sad and choked up. I don't know.

What I do know is that my doctor had sent me to get a brain scan to see if I had any brain metastases, and I read earlier in the week a blog by somebody who had been suffering from brain mets and who was not doing well. "I'll bet you a hundred dollars now you don't have them," my doctor said, holding out his hand in a friendly wager.

I'm sorry, doctor, but I just don't believe such things anymore:

• "Oh, it's probably nothing."


• "You're so young; you have nothing to worry about."


• "Nine times out of ten these things are harmless, especially in people with your history."


• "After surgery and chemo, you're clear. You don't have anything to worry about."

If somebody tells me not to worry, I don't think it's going to happen. So Tuesday evening I was all stressed and began crying uncontrollably. This is something I hate doing because a) it tends to be contagious, and I hate it when Brian gets upset and b) It's just plain embarrassing to be out of control like that. I also threw up again for the first time in at least a week; I thought I had gotten over that. So with the sobbing and the worrying about the future, it suddenly occurred to me that I hadn't heard any results of the test.

"Surely they'd have called immediately if there had been anything bad," Brian said. True, but my paranoia was not about to be derailed by logic. So I sobbed some more. I asked for kleenex and tried to keep the tears from dripping into my ears. My pillow got exceedlingly soggy, and then I couldn't sleep. I kept sitting bolt upright and getting up to do something, anything. To go to the bathroom. To brush my hair. To look for something or organize a drawer. To brush my teeth. Again. By the early hours of the morning I was an utter basket case. I couldn't stand to be touched and Brian wanted to stay home for the day. I went to get my palm pilot and cell phone so I could call Lita first thing for the results.

Brian did go off to work, and I called Lita's office and left a very shaky, paniced message. A couple of hours later, one of the other nurses called me back to say that Lita was in clinic all morning and had asked her to go through her messages. Anyway, the tests had come back and they showed everything was normal.

I thanked her in a very broken voice, hung up the phone, and sobbed hysterically. Normal! Thank god...Thank you for not being so cruel as to have me beat the odds this time. After more weeping and worrying about the future, I suddenly realized that I have a prescription for xanax which says, "take one three times daily as needed for anxiety." Brother, do I have anxiety.

So I've added some xanax to my regimen, although I break them in half now because they make me very sleepy. I might have to stop them until the next crying jag, which I hope will not be for a long time, and which will not be precipitated by something quite so scary as brain mets.

Labels: anxiety, brain scan, Brian, Lita, Xanax

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I am extremely tired after the goings-on yesterday. I love more people and told more people I'd never met before how glad I was to see them, and it was true.

I was very happy to have help getting dressed and would like to thank the bridesmaids for being there. I think everybody looked great in their impractical dresses requiring complicated underwear, and think that anybody who agrees to such a duty deserves every amount of kudo possible. I'd like to thank Maria, particularly for marshalling people and getting everyone there in good order and for holding the bouquet at a crucial moment in the ceremony. I'd like to thank Wendy for helping me with the scary elevator; I was afraid the metal accordion-style door thing was going to crush her. I'd like to thank Melissa for being the photographer and helping to organize the group pictures. And I'd like to thank Sarah, who went on with the show despite not being able to attend the rehearsal and for being my witness (sorry I didn't tell you about this blog sooner).

I'd also like to thank the flower girl, Olivia, for doing a great job walking down the aisle, and who provided no small amount of entertainment value afterwards. I hope you like your flower-wreath headpiece.

It's Brian's job to thank the groomsmen, but I'd like to thank them too, especially my brother John, who doesn't know Brian very well but who agreed to participate. You are the best big brother anyone could ever ask for.

I'd like to thank Brian's brother Todd for delivering a very lovely, and mercifully brief ceremony, despite making me cry with the "in sickness and in health" part. If I could go back in time and change anything, I'd have stuffed a handkerchief somewhere about my person.

Thank you, Dad, for walking me down the aisle. I did not imagine I would ever have occasion to do such a thing, and am extremely grateful that you could be here to walk with me.

The table favors were perfect and included two pieces of Brian's favorite candy, Ferrero Rochet, and a small box of my favorite candy, the best candy in the world, hee hee. Brian's mom put them together, and I'd like to thank her not only for making sure they were sweet-tasting, but that they looked very sweet as well.

Finally, I'd like to thank my mom for arranging the whole event with perhaps less input from me than was helpful. I confess disinterest in invitation ink color and I am fearful of calling places for prices. Much of the planning went on while I was hospitalized, and the thought of planning tended to shoot my anxiety level to nausea-indusing heights. Through events yesterday my mom remained calm. I think what touched me most, however, is that when I got home from the rehearsal the other night, I came home and found my walker decorated with shiny irridescent fabric and beaded ribbon. It was funny and touching and kind of puts me in mind of what I must have been like in my own dress--I'm a little bit gimpy and broken, but anything can look pretty when dressed up for a wedding.

Also, the mashed potato bar and baby roast beef sandwiches at the reception were a big hit; I believe my enthusiasm regarding the food was vindicated. (Whenever I went on and got excited about the mashed potato bar that was going to be at the reception--you got your choice of regular or sweet potato with whatever fixins' you wanted--people would tell me, "uh, ok.".)

The cutting of the cake did not involve smashing pastry into any bodily orifices other than the mouth. I'm sure it was an accident that some icing fell into my extremely prominent cleavage.

Labels: anxiety, Brian, Dad, John, Junior Mints, Maria, Melissa, mom, nausea, Olivia, Sarah, Todd, walker, wedding, Wendy

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It's two days before my wedding, I'm still fighting nausea, and there's an awful lot of backstory to cover.

I discovered in the hospital that you can't depend on the caregivers to necessarily give the best care, whatever their intentions. It is vitally important to keep track of your own treatment and to speak up if something doesn't seem right.

Unfortunately, many of the things that don't seem right are just a natural result of being ill or damaged. I started suffering ungodly muscle spasms, particularly at night. You know how when you fall asleep, sometimes your body does that all-over jerk that feels like you've just fallen from mid-air? Or sometimes it feels like electricity, or like all of your muscles just have to tighten all at once. It's involuntary, and usually harmless, but with my hip fracture, it was unbearably painful.

I also had a huge amount of nausea, which seemed to be made worse by anxiety. Every time the attending doctor and his little doctorlets came by, I felt ill. When my mom wanted to talk about wedding invitations--what kind of print, wording, whether to say "the parents of" or have them be from Brian and me--I felt queasy. When anybody talked about possible discharge from the hospital, I became ill. Where was I going to go? I couldn't imagine going back to the second-story apartment in Westland. But what else could I do? Brian began searching for other apartments, and looking at options also made me feel queasy.

At this point, I began physical therapy. I was on some level glad to be getting out of that torturous hospital device they call a "bed" and beginning the process of becoming something that wasn't an immobile lump of protoplasm, although actually having to do it was painful, difficult, tiring, and also caused nausea. Sitting up for long was difficult at first, but at least I did know--from previous experience--that it would pass and that getting up and moving around would ultimately be good for me. The physical therapist would show up, bring a walker, and have me try to get out of bed and move around. First it was three feet away from the bed and back. Then it was to the door and back. Then it was through the door, across the hall and back. Each time my jaunts got successively longer, and she recommended--as an alternative to going home or going into an "assistive care facility" (read: "nursing home")--that I be admitted to the intensive rehabilitation unit on the same floor of the hospital. I would do physical and occupational therapy twice a day.

So I moved to the room where I would spend my Christmas.

On my first day of occupational therapy, I was measured for compression stockings and given a set of adaptive equipment of the kind they gave to Grandma when she had her hip injury several years ago. I too got the sock put-er on-er, the grippy thing, the giant shoe horn, the pants hook. I'm not sure if Grandma also got the leg loop (it looks like one of those "invisible dog" leashes) or not; I found mine to be incredibly helpful for moving my legs onto and off of the bed.

Physical therapy consisted of walking for longer and longer distances using the walker (but putting no weight on the right foot), doing leg exercises on the mat, and occasionally doing arm strengthening using the pulleys or fulcrum weights. They also taught skills like stepping up onto a curb using a walker, sitting down in a car seat from either a wheelchair or a walker, and using a crutch to go up and down stairs.

I had too much anxiety to do the stairs. I was just too worried about my hips crumpling like phyllo pastry, and the therapists didn't press me.

Occupational therapy consisted of getting me dressed and showered in the mornings, and in the afternoon doing a combination of eye-hand coordination activities, some arm strengthening activities, and some arts and crafts. I saw people making these rubber mats with the Michigan M and when offered the tubs of colored rubber tiles, decided I would try to get creative and make an aquatic scene. The therapist was getting visibly impatient with me (she wanted to clear space off the counter) and I couldn't spend as much time planning my picture as I wanted, so I had to do a fairly rudimentary scene with two fish, gravel, some plants, and two different colors of blue to indicate the depth of the water.

Nobody told me it was going to be a doormat. If I'd known, as I told one of the substitute therapists on the Christmas break, I would have planned the picture to be horizontally aligned...as it was, they must have thought I was either mentally deranged or just really careless.

The other therapist turned it sideways the way I had planned it. "Oh hey, that's actually pretty cute!"

Labels: anxiety, Brian, doctorlets, Grandma, hip, hospital, mom, nausea, physical therapy, spasms, stairs, walker, wedding, wheelchair

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The attending physician on floor 6A was usually preceeded by one of his interns, who would come to ask questions, take vitals, poke and prod, and ask me to breathe so he could listen with a stethescope. Then the full-fledged doctor would show up, with a group of two or more of his interns (I called them "doctorlets"), and repeat the process, which never elicited any new or exciting information. The typical questions were always: "How's your pain?" and "Any shortness of breath?" or "How are your bowels?" or "Much of an appetite?"

They would provide medication based on my answers, which gradually resulted in my taking, in addition to the patch I already had, an increased dosage on the patch, pills for pain (a narcotic and ibuprofen), pills for muscle spasms, muscle relaxing pills, pills for promoting bowel movements, pills for softening stools, pills for stomach health, pills for sleeping, pills for depressions, pills for anxiety, a powder mixed with liquid for--well, they were never able to really clarify what the Nutri-phos is for (I think it might be something like pedialyte)--either an injection of a very powerful opiate or liquid morphine taken orally when I was to be moved, and an incredibly painful shot for preventing blood clots that felt like a bee sting and which I decided might have consisted of concentrated bee venom. After having been immobile for several weeks and on various narcotic products, my digestive system was seriously backed up, which was leading to the abdominal pain and spleen/gallbladder symptoms. So they decided to step up the cleansing of the alimentary canal and also prescribed things intended to flush the colon from every conceivable direction. Yes. You know what I'm talking about. Mercifully by this time I had a private room.

Naturally, I came to dread visits by the attending and his little doctorlets. They were torturing me. Every time they came to visit, I found myself getting nauseous and vomit-y. When my dad and Susan came into town, they took over talking to the doctors when they could (the timing of their visits meant that sometimes they'd miss him and his posse on rounds), and would even leave the room to talk about topics that seemed to turn me green.

I was not in a good way.

When I got moved to my private room, I might have looked forward to getting more individual attention and care from the nursing staff. I now know that this does not necessarily happen.

One of the things the doctors told me is that I needed to drink as much as I could. Take in fluids at all times. Any fluids. Juice, water, milk, anything. I didn't seem to be getting any water, although they did have me on an iv. Also, food is important to get the bowels moving. I needed to keep my digestion working, but I didn't seem to be getting any food, either.

I was actually getting kind of hungry, which at that point meant that I was starving, since my appetite had generally been quite poor, but my breakfast never arrived. I assumed this had something to do with having been moved. Maybe my breakfast got delivered to the other room? By lunchtime I figured things would be straightened out, but again was kept waiting. They had been quite prompt with the food delivery; are they just slower on this hallway, or something? The doctors came, asking about my appetite, and they went. I complained I hadn't gotten any food, and they said they'd make sure the order was there to get anything I wanted.

A few hours later I was ready to chew my arm off.

I called the nurse.

"Um, am I supposed to get a lunch? I've been waiting and I'm really hungry."

"Oh, your orders say no food or water due to a test."

"What test?" I had been told no food or water for the untrasound, but that had been done at six o'clock the previous day.

She flipped through the chart, and found it. "Ultrasound," she said. "You need to not have food or water before the test."

When I pointed out that the test had already occurred--"Or is this another one?" I asked sarcastically--she looked a little bit disconcerted and went to go check.

A little bit later, somebody from food service showed up with a tray. Hospital food is not exciting, nor is it particularly appetizing, but I felt myself beginning to drool. Food, glorious food!

I beheld my tray. It consisted of clear broth, apple juice, and a plate of air.

I laughed hysterically. Clear liquid diet! This is just great...so I hit the nurse call light again and told the person who answered that my plate of air really wasn't the lunch I had been hoping for. "Have you been eating?" They wanted to know. "Usually when you're not eating they start you on clear liquids then..."

Yes, yes. I know all that. But I wasn't on a restricted diet. It was only for that one test, could I please have something normal, instead of something imaginary? He went to go ask the nurse if it was ok. I think she was embarrassed, because they agreed to get anything I wanted. My toasted bagel with cream cheese and container of chocolate milk were delicious.

This was not the only time different shifts of the nursing staff had some confusion about changes in my orders; I learned that as a patient, I was going to have to keep on top of things and let them know. My dad and Susan also helped keep a running list of questions to ask the doctors, which helped immensely. It's also good to know that you can question anything, and you do have the right to refuse the bee-sting shots if you just can't stand them any more, or the plate of air if you want something tastier.

To be continued...

Labels: anxiety, Dad, doctorlets, food, hospital, morphine, nausea, spasms, Susan G. Komen

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