#14 January 8-10

Friday, Chemo Day 11 – I woke up at 3 a.m. wide awake. I try to sleep again, but it’s no go. I finally just get up, grab something to drink, and head to the living room and mess around on the computer until the rest of the house is awake.

The bone pain seems slightly less this morning as I get ready to get another Skele-gro injection. My nurse practitioner emails me the final result on my neutrophils that didn’t even show on the auto count. She thought they might be around 200. They were 60. She says that I’m really neutropenic and tells me to be sure and go to the ER if I spike another fever while on the oral antibiotic.

I’m definitely beginning to feel taste bud changes, and my lunch seems like so much cardboard. I eventually spit out what I was trying to chew, and give up.

 I feel pretty good walking through the hospital halls to get to the infusion center where Skele-gro will again be put into my body. Injection is fast and relatively painless. We head back home, and other than just being really fatigued, I’m OK until the late afternoon. I can’t eat much of my dinner either, and supplement it with some toast. I start to have the “flu-like symptoms” which I assume are the side-effects of this latest shot. I take my temperature, and I’m not running one, so about 7 p.m., I feel so bad, I just take my antibiotic and a couple of Tylenol and head to bed.

I can’t seem get warm even with the heated mattress pad on. Finally, as I seem to be thawing out, I then start to feel flushed. I take my temperature and it’s up - 99 degrees, but nothing to worry about. I keep feeling worse, and keep taking my temperature watching it slowly rise. Eventually, at 8 p.m., an hour after taking the Tylenol, it hits 100, and I call the Dr. I know my oncologist is out of town, so I ask for the one taking her calls. I wait, and wait, and don’t hear back until I make the decision I need to go to the ER. I get dressed, and finally hear back from a nurse who tells me that without that extra .4 of a degree, I can’t be considered having a fever, I should just stay home, and why did I take Tylenol anyway since I’ve now messed up all the readings?

I have to admit that I wasn’t very nice when I told her that I had been told to take the Tylenol for the Skele-grow, and that .4 of a degree did not matter since I know how I feel, and I feel like crap, and I was going to the ER anyway! So there!

We had called my son to drive us in to the ER at U of C since my husband cannot drive at night. Why do these things always happen at night or on the weekend? I could have gone to a closer ER, but they wouldn’t have had access to all my previous blood work for comparison, and it was only about 15 minutes further.

About 5 minutes away from the ER, my oncologist calls. She had just gotten back into town and heard I was in distress. She seconds my opinion to go to the ER, and says she will call and let them know that I’m coming. It’s amazing how much better that makes me feel.

We get to the ER about 9:30 p.m. I put on a mask since I know how susceptible I am to infections, and of course the ER is full of people with who knows what kind of contagions. We sit, and we sit, and we sit. I’m feeling horrible. I’m now clammy instead of feverish, so am questioning my need to have come to the ER in the first place. I finally tell my husband that if they don’t call me by 11 p.m., I’m going home. 

11 comes, and I go tell the front desk that I’m leaving. They tell me a room is being cleaned for me, and surely I can wait just a little longer. I acquiesce and sit for another 30 minutes before I am finally called back.

They have to take blood and pee and x-ray my chest and ask the same questions numerous times. They do start IV antibiotics. Finally, an on call Dr. from oncology comes, and I ask her how much longer it will be. She says, “They didn’t tell you? You’re being admitted. We’re just waiting for transport.” 

I gratefully say goodbye to my husband and have him thank my poor son who’s been in the waiting room all this time. They leave, transport arrives and I am in a room. It’s 2:30 a.m.

Of course, I then have to have more nurse things done, and it’s close to 3 a.m. before I am able to close my eyes. I’ve been up almost 24 hours.

Saturday, Chemo Day 12 – During the night, I begin to feel worse than I did when I arrived at my room. I am awakened at regular intervals for changes of IV fluids and antibiotics, taking of vitals, etc. I cannot seem to get comfortable on the bed. I’m cold, then I’m hot. Mostly, I’m just miserable. I get very little sleep.

I turn the TV on the HGTV channel, and they’re running a “Flip or Flop” marathon. I can’t seem to concentrate on reading, so just keep it on all day, occasionally dozing off for a bit.

The hospitalist arrives mid-morning, and I almost think that I’m going to go home. He’s a little hesitant, but is thinking it might be OK if my oncologist agrees, until he notices one of my labs is still abnormal. Not going home today.

I haven’t eaten anything but some saltines, so I decide to order some lunch after the Dr. leaves. When it comes, I feel very hungry, and it tastes good. Then, about halfway through, I just can’t eat anything else. I keep drinking juice to keep my calorie level up, and I’m drinking lots of water as well.

My husband arrives around noon to bring me stuff I desperately need. It’s so dry in the hospital that my nose and lips are cracking. He brings my nasal gel and Carmax which is so wonderful. Just after he arrives, my oncologist also comes in. She’s glad that I’m doing better, but is concerned about the redness around my port. I tell her that it was noticed on Thursday when I went in for my first Neupogen shot. It doesn’t hurt, only seems slightly itchy, but that could be the bandage holding the IV in. She says she hopes they don't have to remove it. Remove it!?! Are you kidding me? After all I went through to get it in? Step right up, ladies and gentlemen, the Pity Party is beginning.

I send my husband home soon, since a snow storm is on its way. He gets back home before the snow is too thick. I see it swirling around the windows, and since I’m on the 10^th floor, it’s like I’m in the middle of a snow globe.

I try to eat dinner with about the same result that I had at lunch. I am feeling much better than I was in the morning, and I try to keep myself awake so I’ll sleep tonight. “Flip or Flop” turns into the “Property Brothers” and I manage to stay awake until the 10 p.m. news comes on. I turn off the light and fall deeply asleep until the nurse comes in at 10:30. Although I’m sure she knocked and called my name, since they always do, I didn’t wake until she was standing right next to me. Startled awake, I should say.

I slip back to sleep for about an hour, when the vitals must be taken, so awake again. At some point around 2 a.m., I give up trying to sleep and turn on the TV – nothing but infomercials. Back to sleeping, waking, blood taking – rinse, repeat.

Sunday, Chemo Day 13- Finally, at 6 a.m., I give up, turn on the news, and order breakfast. I feel pretty good now, just excessively dry, in need of a shower and a good bed with undisturbed rest. Breakfast arrives, and I can still only eat about half. I decide to prepare myself for going home, so I put on my shoes, clean up as much as possible, and sit in the chair instead of the bed. The snow has disappeared, the skies are clear and the sun is shining. I have a great view of downtown Chicago from my room which I wasn’t able to see before today because of the weather.

My husband decides to come up since I’m pretty sure I’ll be able to come home. The one blood test they were waiting on, is now in the normal range, so I can’t see why not.  Finally the hospitalist comes, agrees that everything looks good, and says he’ll put in the discharge. He does ask me about taking magnesium. I normally take a magnesium supplement, but of course, while at the hospital, I haven’t. I tell him that, and he says something about giving me some, and then he says, “Or you can just take it when you get home.”

My husband has decided to wait downstairs in the car since we assume it won’t be long. I wait, and wait, and finally put in a nurse call to see if the discharge papers are in. My nurse says she hasn’t gotten them yet. Dang! Wait some more. 

The nurse comes in and says the hospitalist put in for something called a “magnesium read” (if I heard her correctly,) which takes two hours. I say “Nooooo! We discussed this. Can’t you get in touch with him?” She said she had a page in for him, but had not heard back. Then she says (God Love Her!) “You can refuse it.” I jump on that immediately. Refused it is!

She comes back with the paraphernalia to remove the port access, and after completing all the cleaning of the area (and she was much more thorough than anyone else who’s ever accessed my port,) she takes the needles out, and a small amount of serous drainage drips down and onto my gown. She says, “Oh, Babycakes, I don’t think you’re going home. Nothing is supposed to some out of your port.” She contacts the hospitalist and he tells her to re-access and take cultures. Before she re-acesses the port, she tries to take a swab of the fluid from the port, but nothing will come out. She thinks it looks less red now.

I am desolate. I call my husband, and he says he’ll come on up. I cry. All I want to do is go home. When the nurse comes back in, I tell her that I don’t see why I can’t go ahead and come home. I don’t feel I need to stay there just to wait on the cultures. If they need me to come back in, I’ll come back. I’m begging now. ♬Beggin' you, let me go home now, baby♬

I don’t know what she did, but she managed to talk them into letting me come home! O frabjous day! I'm supposed to watch my temperature and the redness around my port, and if anything else come out of it, I must come back in. I agree to anything. Where do I sign?

Husband leaves to get the car, I quickly get out of the gown, put on my coat, and I’m outta there! Since it’s now 2:30, and I haven’t had lunch, we make a stop at my favorite fast food –Culver’s. I have been lusting for their pot roast sandwich. I get fries with it, but the fries taste really funny to me, so I don’t eat many. The pot roast sandwich however, is heaven. I am able to eat the whole thing! We even split a flavor of the day – chocolate covered strawberries!

As soon as I get home, the dogs are all over me, and I am so glad to see them as well. I still feel pretty tired, so I basically cuddle on the sofa with the dogs.

That night, I go to be about 8 p.m. and sleep the hardest sleep. Even though I have to get up a couple of times during the night to get more to drink or reapply dry mouth stuff, it’s so good to be home!