Thurs, 30 August 2007

My Dear Friends,

My apologies for all the typos in the last entry. Lindsay typed it from my scrawls on a piece of paper. I had trouble reading some of it!

Been doing OK. Still pretty tired. This antibiotic drip sometimes takes 3-4 hours instead of 2-2.5 hours. I keep turning it up.

The first time I did this myself it was a bit overwhelming. So much for avoiding the medical field as a profession! On Friday morning, the nurse came and set up the bag & showed me how to flush (inject) the saline and heparin (to prevent blood clot in the IV line) but on Friday night, I was on my own.

My sister and my neighbor/friend (the university professor) were with me. They helped me decipher the instructions. At one point, I called the 24 hour nurse. I got an answering service! We had to figure things out on our own as I was in the middle of set-up but the on-call nurse ended up calling back an hour later.

The Professor stayed with me until after midnight, bless her heart. I had dozed off so she woke me when the drip stopped. We were watching "Little Miss Sunshine", a highly-overrated movie. (Neither of us liked it. It starts with a woman picking her brother up in the hospital after a suicide attempt then later the Grandpa overdoses on drugs and DIES in the hospital! Not good after what I went through last week. And this was supposed to be a comedy. I laughed twice in the first hour.)

The Professor came over again a couple days ago to wash all my dishes and scrub my kitchen floor. She's a good friend.

Anyway, I've been doing this antibiotic twice a day (morning and night). They said my blood looked OK, no kidney damage yet!

I have two appointments next week: one with Dr. V (infectious disease) and another for a colonoscopy (to see if that was the source of the infection). Ran into my oncologist at chemo on Monday. She told me Dr. V ordered the colonoscopy so not to worry about cancer there. She scolded me for not asking the question (why are they doing it?). Of course, I'm still worried.

A pharmacist called from the medical supply place after they delivered my next week's supply of meds & accessories. I asked her if this was overkill since my chemo nurse on Monday told me my blood cultures were clear. The pharmacist said my blood cultures were positive. I asked if that was from my arm or the port. She said she didn't know, she only had one result. (Of course the port showed infection, we knew that.)

The pharmacist tried to scare me by saying if I ignore the infection and it grows in my blood, I could get a fever, then septecemia and die (in so many words). She said the antibiotic level is appropriate.

I wish these medical people would stop telling me how sick I am when I feel fine!

Well, I have to go to work this afternoon, after I disconnect myself from this pole, so I'll close here.

Thank you for your continued prayers. It's good to be home.

Love,
Jeanette

PS: Hello to all of Mark's coworkers who wished me well at his softball game on Tuesday! :)

Weds 8/22 PM and Thurs 8/23 - Hospital

Weds night
(9:15PM)

Very tired. Hoping, well, worrying about that CAT Scan. It is done so I have no control over how it comes out. Have a bad feeling about the liver & colon. So tired.
I'm afraid some doctor's gonna come in here and tell me I'm dying.

(11:55PM...almost midnight!)

"Jeanette," the nurse tried to wake me gently.

I stirred as she continued.

"The doctor wants you to have a procedure tomorrow."

A procedure! My mind raced. What did they find? What was this new worry they concocted?

"It's called a trans-esophogeal echocardiogram. You need to sign this consent form."

Oh that!

"Yeah," I mumbled, sitting up. "I know about that."

"No food or drink after midnight."

"Yeah, they told me. Anything on the CAT Scan?"

She said no.

I had slept for only an hour. Maybe I should check if the vampire is coming for her usual 1am feeding. I guess I'll walk up to the front desk to offer my arm early. My roommate is watching some violent TV show.

The nurse just came by to check my roommates IV battery. She tells me no vampires tonight. Gave her something to do...look up info on this second antibiotic they've been giving me. Got info on the first one yesterday. Looks like it treats every STD under the sun. Eeeew!


Thursday 8/23 (8:50am)

Very weak. Diarrhea is a side effect of 3 of the medicines I'm on (two different antibiotics and my old friend Neupogen). Lost count of how many times I've gone already.

My nervousness about the CAT Scan isn't helping. My intestines get messed up when I'm nervous.

I'm afraid the infectious disease doc will come up with some other procedure. I don't trust her that way since she sprung this TEE test on me. What if she wants to investigate my colon? Then again, it's a volatile area and maybe they won't want to mess around in there.

I just want to go home and crash on my own couch.

My roommate just ordered one of everything on the breakfast menu. Heck, I'm just happy she's keeping food down now. It's no fun to listen to someone else throwing up when you're nauseous yourself.

As for her breakfast, I guess I'll just walk by and enjoy the wonderful aroma---again.

It's very hard to not feel despair.

(9:05am)

Roommate is short of breath. I rang for the nurse and a couple of them showed up. She'll be ok. The nurses are great here.

One told me my TEE test is at 11am. I hope they let me eat after that. I've heard my esophagus will be sore after the test. I just hope they put me our so I don't gag.

Roommate's doing better. She has a friend visiting. Sounds like a complaint session.

(1:06pm)

My cellmate has been paroled. Good for her. We wished each other luck.

A nurse installed a "PICC line" around 10 am so I can have IV antibiotics at home. They still need to come xray it. It went in right along the bend of my elbow in the inner arm. It was a "sterile" procedure so it took her like 45 minutes to set up, complete w/mask, gloves and that blue operating room gown. She assured me the massive needles were just to draw the numbing medicine, etc, from the bottles and that she'd use smaller ones for the procedure.

Yes, it hurt. Guess I should offer it up for my sins. That's the stock answer for Catholics.

She had to tape my hand down, extended like Jesus on the cross. I'm sure crucifixion is worse so I shouldn't complain. The actual procedure was over quickly...5-10 minutes.

Immediately following, they took me down for the TEE test. They put all kinds of jumper cables on my chest to monitor the heart. I laid on my side. I had to swallow some goo to numb my throat they they sprayed my throat twice with some numbing spray. I have observed that everything that's supposed to numb you burns the neck first.

The nurse supposedly gave me 2 shots of a sedative but I was wide awake when they shoved the garden hose down my throat.

"Breathe through your nose and swallow when the doctor says swallow."

Right. Guess I did OK. Coughed a few times but tried to get my mind straight. If I screwed it up, the test would just take longer.

I hoped I didn't tick off the nurse when I asked her to scrub her hands and give me a new mouthpiece earlier. She opened it with her bare hands and said it was going in my mouth. Nope! She was nice about it though. She was in her mid-fifties, blonde with heavy eye makeup. She'd probably seen it all. I was apologetic but insistent, as you have to be.

(By the way, the phlebotomy manager apologized personally and brought me flowers for the unsanitary blood draw I had the other night. Whatever. I still hope I'm not here tonight, as that chick works again.)

OK. So the TEE result showed "no vegetation on the heart." Eeew! Since a doctor did the test, he was able to tell me right then, during the test.

Still FREAKING OUT about the CAT Scan.

There was a loud patient across the hall during my test. The slim Hawaiian nurse took his verbal abuse for a while then made a phone call. I think they sedated his belligerent ass because in a short time he was saying, "Oh yeah!" every time a nurse passed by. He was now in the hall after his test. Then he ordered a steak and potatoes from someone walking by! She assured him they were making his steak when she passed by again. He discovered a phone next to his gurney.

"Do you have a directory?" he asked no one in particular.

Then he dialed and ordered "a ground round, a big one" and "a six pack of pop" from whomever answered.

The Hawaiian nurse had returned to the room and I caught her eye with a smile and a puzzled look. She smiled back nd shook her head.

(1:40pm)

Nurse just came in to hook up my antibiotic. I get them at 6am, 2pm and 10pm. Hope I'm not still here at 10pm. Shared the alone story with her. She got a kick out of it. She says I'm getting a new roommate, an older lady.

"Is she half dead or what?" I asked.

"No, I don't think so," she reassured me.

I should order lunch.

I'm so afraid they won't release me today. No sign of any doctors yet. Hope the infectious disease doc does not pull another test out of her hat.

(1:50pm)

This sucks! The kitchen won't feed me! I'm still "NPO" they said. It's some Latin term for "nothing by mouth". i told them I had my test but they didn't believe me. They said the floor has to tell them it's OK. I went whining to the nurse.

(1:55pm)

Ordered food.

(2:10pm)

The nurse was wrong. This roommate doesn't look so good.

(6:50pm)

They've beaten me. I'm a shell of a woman. I got trapped in my room while they gave that poor woman Last Rites. The hospice rep was working hard to get her some serious pain meds. (The rep came to my bed first and I almost jumped out of my skin seeing "HOSPICE" on her shirt) I prayed with the family from behind the curtain then respectfully escaped to the hallway when the priest was done. She's still alive (ovarian cancer of a mass blocking her colon).

I sat in the hall talking to the family while the nurses performed some horrific procedure where they relieved bowel pressure by a tube inserted through the nose down in tot he stomach and beyond, with suction! How that poor old woman screamed.

Then came my CAT Scan results. More bone metastases with some type of thickening in the colon. The doc told me by the nurses desk.

I asked the doctor, "Did they compare it to the bone scan of April 20th?"

His dark eyes got wide.

"That's an excellent question," he got up immediately.

They used my Nov '05 PET/CT Scan. We already know I've had more bone mets since then.
So I'll need another bone scan for comparative purposed then a colonscopy. Great.

They've beaten me.

I am going home tonight. After much hard work, the case manager was able to arrange a home care nurse to come by tomorrow.

I'll get 2 weeks of antibiotics at home, twice a day 2 1/2 hours each time.
My culture from the other day still needs to incubate for 5 more days to see if anything grows. They'll monitor my blood counts, kidney function, etc. I have to watch for fever, excessive diarrhea (MORE than now?) etc.

I am defeated, totally drained. I was a strong and vital women when I cam in here. Now I am a shell.

(7:25pm)

They moved the old woman. Dr. V, my infectious disease doc said she told them not to put her in my room in the first place.

New roommate #2 just arrived. Metastatic lung cancer, 44 years old, just diagnosed. She's very upset but I can tell she still has a lot of mileage left in her. Two young children. They're not here but 2 weeping relatives are.

My friends, if you smoke, I BEG you to thrown that poison away.

Wednesday, August 22, 2007 - Hospital

Hi, everyone, Mark here again with another of Jeanette's blog entries. One quick update, she had the surgery yesterday (Tuesday) and it went without a hitch. She's back in her room recovering, and taking a number of scans and tests. Now, on to her entry:

6:30 AM
I was just about to order breakfast, but the nurse told me not to eat because I'm supposed to have an abdominal CAT Scan today. I wish I could avoid all these tests. They're trying to rule out an abcess that could be causing my infection.

Some chick woke me up at 1 AM to take blood. She was wearing gloves, but ripped off the middle finger. She swabbed me with alcohol, then touched my vein with her bare finger! I was shocked! The reason I'm here is because of infection!

"Should you be doing that?" I asked.

She mumbled something about how she can feel the vein better that way and reluctantly swabbed my arm with the used swab, then used it on her finger. Gross! how many other people did she touch without washing her hands? Maybe she feels like we're all dying anyway, so who cares?

Had the port out yesterday. The area is a little sore but not too bad.

I asked for some ibuprofen last night.
"Do you want some Vicodin?" the nurse asked.
"Vicodin?!" I said. "Heavens, no! I don't want to throw up, I just need ibuprofen."
They found some in their drawers, so I didn't have to wait 5 hours for the pharmacy to re-open.

2:55 PM
My forehead is turning red. Not sure if it's the antibiotic or the "contrast" I drank for my impending CAT Scan. Someone paged the nurse, so hopefully she can solve this problem.

Had 3 visitors so far today. My stepmom first thing in the morning, then Dad, then my favorite Deacon from church. (Actually, I don't know the other ones.) The Deacon walked into a philosophical discussion I was having with my roommate and a Methodist pastoral associate.

3:10 PM
Now I'm scared and nervous. They'll be "coming to get me" for the CAT Scan soon. Two main fears: I'll have to stay here longer, and (the big one) they'll find cancer in an organ. Oh, no, they're here!

4:20 PM
Said a rosary in the Radiology hallway waiting to go in, then waiting to be transported back. My stepmom came to see me again. they wouldn't let her drive me up to my room. We had to wait for an official pink-shirt transport chick. She was nice--let me make a pit stop on the way.

5:20 PM
ordered a burger w/ extra tomatoes, cheesy potatoes and apple pie. Was on hold for at least 15 minutes. This is my first food today.

Need to have another test, a TEE (trans-esophogeal echocardiogram) tomorrow. The 2D Echo showed no infection of the heart but to be absolutely sure, I need to swallow some tube that'll take pictures of my heart from my esophagus! So guess what--they're starving me tomorrow, too. No food after midnight for the third day in a row.
[Mark's note: I brought Jeanette some candy around 8 PM.]

yesterday was because of the port removal surgery, today for the CAT Scan, tomorrow this TEE. That's okay, I was planning to lose 10 lbs anyway. The heart nurse promised numbing of the throat and some type of "twilight sleep" sedative.

The infectious disease chick said if I don't do the test, she'll treat me for 4 weeks of IV antibiotics (just assume the heart is infected.) If I take the test and it's OK, I get 2 weeks. (If it IS infected, 4 weeks anyway.) So the test may get me out of 2 weeks.

Get this -- I get to administer my own IV.
I go to the doc, "Yeah, I hear someone will be coming to my home to give the antibiotics every day."
"Oh, no," she said. "they're coming once, to teach you!"

6:05 PM
Food's here.
Still scared stiff about the CAT Scan results. I hope I don't have to cry again. Bawled enough this morning.

They forgot my tomatoes.

Tuesday, Aug 21, 2007 - Hospital

Hi, gang, Mark here. Jeanette wrote up a blog entry while in the hospital and asked me to type it in... so here it is, verbatim (I tried to minimize my comments, since it's been almost a full day since she wrote it):

7:30 a.m. 8/21

I don't know how prisoners do it. How do they get their minds around being incarcerated? I'm trapped like a rat. Later on, the oncologist will come in to see me. I fear her, yet I will not be able to escape.

Last night around 8:30 p.m., they took 4 more blood cultures-- 2 from the port, 2 from my arm. Then a tired, disgruntled employee showed up at half past midnight to do a blood culture. I told her they did it 4 hours before. She called the nurse, who saw nothing in her computer. I asked to talk to the nurse in person, showed her my arm to prove they already did it. (I'm thinking... I don't CARE what the computer says!) She called the lab, and confirmed that they already did it. I wonder how many other people had extra pokes that night because they wre too weak to question or fight back?

They told me last night, in an "oh, by the way" tone of voice, "You're having surgery tomorrow."

They're taking the port out. Guess it makes sense, while I'm here. I cant' wait to get the heck out of this hospital.

My antibiotics arrived sometime last night. The little bag has an orange "STAT" sticker--I guess "STAT" means six to eight hours after you arrive! I would've been really ticked if it arrived in the a.m. Then I could've spent the night at home in my own bed. I didn't see the clock when it arrived, probably between 12-1 a.m.

Shortly thereafter two people came in to confiscate my food and water. Nothing after midnight due to surgery tomorrow, they said.

I'm pretty upset about being here. I feel fine (and ornery.)
When I was here in May 06, the nurses were nice and i wrote that letter complimenting them. So far I've only seen one of those nurses. She said I looked familiar.

I hope my surgery isn't at 3 p.m. I'm pretty thirsty. [NOTE: Almost 3 pm exactly -Mark]

Still not sure what time I've been "boarded." A new medical term--it means scheduled for surgery. Sounded to me that they were going to tie me up or something.

Very tense. My intestines are churning. Considered tying the bedsheets together but I'm on the 5th floor so I probably don't have enough.

I hope they give me enough warning for the surgery so I can have Mark come back to be with me. He and the kids left at 9pm last night. I was in tears. It's hard to be alone in the hospital. I remember last time when I called the chaplain just so I'd have someone to talk to.

I can't wait to break outta here.

The hardest part is coming face to face with my mortality again. I'd been trying to live a normal life, every day but Monday (chemo). When I'm tossed in the hospital, I think about how I yelled at my kids that week, or ripped at my husband. then I feel so much remorse because I don't want them to remember me as being angry and mean. I cry about that the most.

Please pray for me and be nice to the people you love.
-Jeanette

Monday, 20 August 2007

My Dear Friends,

Just a quick note. I have to go to the hospital. I have a strep infection in my port so they want to pump me full of antibiotics for a few days. They will check to make sure the bacteria has not attached itself to my heart.

I will keep you posted.

Please pray for me.

Love,
Jeanette

Tues, 14 August 2007

My Dear Friends,

Spoke to Mom's doctor on Friday. She's only Stage 1 but she needs surgery. He started to explain a "modified radical mastectomy" to me. (I had one.)

I interrupted,"Just a minute, doc, I need to tell you about my own situation..."

After that, he kicked up the vocabulary a notch!

In a nutshell, Mom needs to decide between removing the infected quadrant of the breast or the whole thing.

As I was leaving, I noticed a familiar face in the crowded waiting room.

"Mom!" I said, also noticing my aunt sitting next to her in full nun garb, veil & cross.

Then I put my foot in my mouth.

"Sister!" I exclaimed, "Speak of the Devil!"

The entire waiting room burst out laughing as I stammered,"Well, I didn't mean it like THAT..."

Anyway, I took my aunt outside and we discussed Mom's condition. I recommended taking the whole thing. If they took a quadrant, she'd have to have 6 weeks of radiation (like me) but the doc wasn't sure she would keep that schedule.

In either case, the doc will also remove her lymph nodes. If those are clear, she's free to go. If not, chemo. But we'll cross that bridge later.

Spoke to Mom today. She's opting for removing the whole thing and has scheduled surgery next week.

As for me, my latest issue is an infection in my port. Trying to remember if it was already irritated before I went to the hospital to get it checked (when it wasn't working). I don't believe so. My nurses say this is a frequent problem, people developing infections AFTER getting their ports checked at the hospital. Nice!

Already tried antibiotics and Neosporin. Not helping. Don't even get me started about puncturing the area yesterday for treatment. That was NO FUN. We've all had a cut that got infected. Imaging shoving a needle in it! I asked what we do now. The nurse said removing the port and getting a new one is a possibility. That's all I need is another surgery. I think not.

Maybe I'll ask them to give me an IV in my arm for treatment next Monday to let the port area heal up a bit. Who knows?

Other than that, I am well.

Thank you for your continued prayers.

Love,
Jeanette

Friday, 10 August 2007

My Dear Friends,

This afternoon, I have to go see my mom's doctor to get the real scoop on her condition. Played phone tag with him on Tuesday. When I had to leave the house for an errand and I missed his return call, he refused to speak to me on the phone. Sounds like a power trip to me. No matter what I said, the receptionist kept saying, "You have to come in. You have to come in." Seemed like she was afraid of him.

What can I do? I have to go. He'd better not make me wait. Luckily, his office is down the street from me. That's a happy coincidence.

As for me, kinda tired this week. I had made a habit of going to bed late but I've had to work this week. Hard to make the transition. Another mom at work is in the same boat. They've had no work for us all summer. Also, I miss the kids during the day.

I'll post again when I know about my mom.

Thank you for your continued prayers. Oh, by the way, I fell pretty hard in my backyard a few weeks ago when I tried to duck from a bee lunging for my face. Hit a stump on the way down so I had a huge bruise on my left shin but I was VERY HAPPY I did not break any bones. This is a real fear in my condition. Phew!

Love,
Jeanette