Home Again, Home Again!

Jiggety jig!

I am thrilled to be ensconced in my very own chair, in my very own house, in my very own jammies. Zack - the hero driver - navigated us out of the hospital, north to the pharmacy, and home through the foot of snow. Many thanks to Danny next door for shoveling a path for us. We really do have the very best neighbors ever.

Only a minor insurance adventure at the pharmacy. Cigna didn't precertify the oral antibiotics, so the pharmacy wouldn't give them to us unless we pay retail ($2500). Quick calls to the discharge nurse and the amazing Dr. L. Cigna has gone home for the weekend, but LFH discharge nurse thinks she can get them to precertify the drugs on Monday. Pharmacist pulls out his hero badge and GIVES us three days of antibiotics to get us through until the certification. Zack runs out of the pharmacy with a sack full of meds, and whisks me home.

Although I was very well cared for at the hospital, and received lots of well wishes on my way out, I can hardly describe how unbelievably great it feels to be home. And, I'm wearing pants!

Path Report: Part 2

Dr H called to deliver the good news. The pathology report was completely clear. The pathologist did note that there were precancerous cells in the ovaries. These cells, over time, could become cancer. What this means is that this preventative surgery actually prevented something!

Drs H and Se are calling in our medications so that we can pick them up on the way home. This would be a very good thing (thanks to them)! Lynn is waking up slowly but is already making "can we go home" noises. Things are looking promising and I would drive through what's left of the snow to get us there.

The Lynn Arises

We have a stirring in the bed and the Lynn is awake! She got out of bed to go to the bathroom (walked all by herself already). I don't know if it was the cocktail that the Anesthetist did or whether it was the Inapsine, but she is fine and slept for a good 2-3 hours. Still uncertain as to whether we get home tonight--snow is still mounting.

Update: Lynn was out cold again almost immediately. Let's hope for more sleeping and healing.

Permission Granted

We have the prescriptions written and permission to leave was noted on Lynn's chart. Lynn is still sleeping soundly and the snow is still falling (white-out conditions outside). I'm not sure what to do, but my choice is made for me while she sleeps. I also need to decide how to get the prescriptions filled. With the snow as it is, I might have to get her home and then go out for them again. Dr L offered to call them in, so I might take him up on that.

Home?

Lynn is back in her room but is very groggy and the nausea sounds like it's beginning (we hit her with something as soon as she got here, so hopefully she's all set for a while). The snow is coming down, but doesn't look as bad as they said it would be (knock wood). Let's hope that Lynn gets on her feet to go home today, though safer is better.

In and Out

Dr L came out just after 10 am or so. Everything seemed fine with nothing concerning. He is hoping to have her home today barring nausea and any issues with the infection. Hopefully she'll be in her room by noon. We are back to drains again on one side.

UPDATE: Drs L & Se stopped in. They are ok with sending her home. Dr Se will prescribe the oral antibiotic for Lynn. Follow-up appointments for both doctors in the coming weeks.

I am hoping they can all call them in for me. Easier to pick up on the way home if we can. No Lynn siting yet.

Deja Vu All Over Again

Here I sit again at LFH waiting for Lynn to return. This time I got to follow Lynn into the recovery room, but after that...Ok, we know that drill. Right now Lynn is in surgery to swap out the spacer for an implant. The hope is that the surgery will clean out the area and, via the implant, cause less future irritation to the site. She should be out in an hour or so. Dr L says it's a simple procedure. The cultures all came back negative, but Dr L and Dr Se thought that this is the best next step. Oral antibiotics once we're done and potentially leaving today (again).

For those of you who have been playing along from home, let me recap the week:

Monday - Surgery at 7:30am

• Dr L was in for someone else's surgery and stopped in to see Lynn. Wasn't happy with the swelling, redness and heat around the right breast.
• Lynn is in surgery with Drs H and W which takes a little longer than expected but completes with no complications
• Dr L confers with Dr I about the "infection" and he agrees that this is not a normal result of post-radiation.
• Dr L confers with ID about issues and is getting blood tests. Schedules Lynn for an Ultrasound and Ultrasound-guided aspiration.
• Lynn is released to a shared room with strong antibiotics for the infection in addition to the surgery. The swelling and redness of the infection are much less now (marked improvement which is noted as promising by all doctors.
• After speaking with the head of nursing, Lynn is moved into her own room. Dr H visits and reassures us that everything went really well and from a surgery perspective she should be able to leave by tomorrow. She assumes that the infection will keep us here longer.
• Lynn and I both spend the night int he hospital. The nausea is not great, but the pain is minimal. We both get at least 5 hours of sleep which is great for Lynn.

Tuesday - Ultrasound, Aspiration at 12:00 PM

• Blood draws most of the day to monitor status of infection and surgery. BP low but slowly rising.
• Drs H and L stop in to confirm another night of stay but that all in all everything is looking good from surgery and infection aspects. ID doctor to visit later.
• Dr I stopped by to confirm that everything looked much better.
• Lynn is brought in to Radiology and they aspirate a good deal of fluid which is sent to ID for analysis.
• Lynn is eating better, but nothing interesting yet.
• Dr Se visits to review Lynn's case. He needs more conclusive evidence from the culture on how to proceed. He wants to get the best antibiotic for the infection he can and will base it on the culture. He is concerned that the spacer will need to be removed.
• Lynn sleeps on and off during the day. The nausea is nearly gone, but eating remains uninteresting
• Dr B stopped by to visit. She also agrees that the surgery was great news and is waiting for the path for final confirmation
• I sleep at home and Lynn spends the night in the hospital.

Wednesday - Awaiting culture results and next steps

• Lynn has a rough night which results in a much higher level of care and attention
• Dr L stopped in and is happy with the improvement around the infection
• Dr H stopped by to review and says that if it was just surgery, Lynn would be going home. The path report on the washings is negative which is great news.
• Dr L has Radiology install a PICC line (a more permanent IV) at 9:15 AM so that Lynn can take home IV antibiotics. Side benefit of no more sticks with a needle.
• Dr Se stops in and confirms nothing from culture
• I sleep at home and Lynn spends the night at the hospital. We both sleep much better.

Thursday

• I go to work after stopping in at the hospital. Gab takes the morning shift (thanks Gab!)
• Dr L stopped by to let Lynn know that he wants her out as soon as possible.
• ID confirms culture negative, but suggests removal of implant
• Dr L and Dr Se confer and agree to a morning surgery to clean the area and swap the spacer for an implant. The hope is that doing so will remove any remaining bacteria fluid and reduce irritation from the spacer. Implants have no edges to rub against the skin.
• I sleep at home and Lynn spends the night at the hospital. Lynn sleeps great, but I don't sleep well at all. I arrive at the hospital at 5:30 am for the day.

Going Walkies

I took myself for a quick walk around the floor this afternoon, and realized a few things:

Top ten signs you've spent too long in the hospital

1) You can say hello to most of the nurses by name.
2) Staff wave, call you by name, and wonder whether you are "having nice walkies?"
3) You forget you aren't wearing pants
4) Staff point you out as you go by to other patients as "that cute little cancer girl"
5) Jello, or no Jello? Serious deliberation
6) Staff start asking you real questions: "does the cancer hurt? was chemotherapy hard? you are so young, does your mom worry?" (everyone asks about your mom)
7) You run out of veins.
8) The routine begins to make sense.
9) Doctors forget why you were originally admitted.
10) Coming back to the room, you look for your housekeys to open the door.

No News is Good News?

Not much to report today. The infection is still contained and Dr L still wants Lynn out of the hopsital as much as we do. There is no growth on the cultures and no final path report as of yet. We hope that the infection can be resolved without any other impact to Lynn.

The Joys of Responsibility

The head of nursing came by this afternoon and was really great. Seems that our hospital is having an influx of new patients and nurses from another hospital and it's causing major issues. She said that she would insure that Lynn had her personal staff taking care of her tonight. Needless to say, between that and the PICC line, tonight should be better.

Dr Se also stopped by and said the lab really has nothing. They are concerned about the infection and there is now a high probability that the spacer will have to come out. The big hope is that the implants will then go in, but the first priority is Lynn's health. Looks like we are here overnight again and we'll see what happens tomorrow.

I will be going to work tomorrow as I've been neglecting it a bit too much while here (not that I feel even remotely guilty about it--let's get the priorities straight, right?). Thanks to those on stand-by for hospital shifts. Lynn will love the company and I will feel better with someone here. I will be stopping by in the morning on my way to work and in the evening on my way home.

Next Steps

At 9:15 we got a PICC line installed which means that Lynn can do IV drugs at home. This brings us closer to a potential leaving of the hospital (what everyone wanted in the first place). The ID doctor who showed up said that they are not seeing any growth in the cultures (unsure whether it's a slow growing bacteria or whether we have no bacteria in the culture at all). We should be meeting with a home nurse about how to use/maintain the line.

At this point Lynn is up and roaming and we're going for a walk soon. Cross all fingers and toes for leaving. Lunch is next and we're hoping for more food down.

The Bear(er) of Good News

If there is a person out there that can stand in for me in taking care of Lynn (read: kick the crap out of people who mistreat Lynn), it is Dr H. She has already "laid into" people on her behalf and has been a very strong advocate for her. Thanks, Dr H! I will still be talking to the head nurse, but battle one is complete.

She shared some good news on her way out. Part 1 (the washings) of the path report has come back negative. This means that there is no free floating cancer cells (even microscopic) in the abdomen. This is great news! We still need the full report to celebrate, but there is a huge collective sigh of relief here.

The Wrath of Zack

There are few things that will actually get me angry. Not treating Lynn like she is the most important thing ever I can let go, but not treating her like a human being I can not.

So I got to the hospital at 6:30 am and Lynn was beside herself. It seems she slept very little because the nurses were constantly trying to fix the IV line. They actually had to move the line because of an occlusion which meant many more sticks because they just couldn't seem to get a vessel. Needless to say, the service last night was terrible at best (that is more a comment on how they administered versus a comment on their competence). I am going to have a conversation with my favorite head nurse today.

Dr L stopped by to check on her. He thinks things look better, but is waiting to see what Dr Se has to say about the infection. Everyone is waiting for the lab results. They may put in a PICC line just in case there is an IV antibiotics. Right now we are waiting for the blood results too as her hemaglobin is low.

I just want to get her home.

End of a Long Day

We spent most of the remainder of the day just hanging out and Lynn actually got an hour of sleep in which did much good. The feeling is that basically Lynn will be doing fairly well by morning and we'll just be waiting for the next steps in how we're going to tackle this infection.

Dr B stopped by to check in. She mirrored the positive outlook of the surgery that Drs H and W felt as well. This is a good sign. As before, we will wait for the pathology results before any celebration begins.

After much contemplation, I decided that it was best for both of us if I went home and got some good sleep in my own bed. It's an interesting feeling to know that your loved one is alone in a hospital room without you and you are home without her. Knowing it for the best in the mind does not agree for what might be best for the heart. Needless to say we both have the phones by the bed. If I don't sleep well, I'll just get up, shower and head to the hospital.

Too Much, Too Soon

Late this morning, Lynn began the process of getting out of the bed and doing things like washing her face and brushing her teeth. They changed the bedding and were about to get her back into a much needed bed when the wheel chair for the ultrasound came around.

We wheeled down there and then sat in the hall waited for the techs to be ready for us. When we got into the room, they went through the process of seeing if there were any fluid pockets (there were). The doctor came in (Dr Sy) to aspirate the fluid to send it to the lab.

When we got back at 1:45, Lynn was cooked. We settled her back into bed and managed getting some food down (mostly jello, juice and tea) and then Dr Se (head of infectious disease area we found out later) stopped by to check in on Lynn and get up to speed. He was definitely the antithesis of House MD when it came to bedside manner.

The skinny of all this is that we hope it's something minimal so that we can get to pill form antibiotic and go home. The next stages in order of best to least is: 1) IV antibiotic, no surgery, 2) IV antibiotic, surgery to replace spacer with implant, 3) IV AB w/ surgery to remove spacer completely.

For now we hope for the best and get Lynn some sleep. I am trying to convince myself that sleeping at home tonight is really best for everyone. Is it really 3:45? *Yawn*

Parade of Doctors

Dr I swung by this morning after Dr L came by. He said the area looks much better (and that Lynn generally looked better (he said the last he saw her, in recovery, she looked like a "train wreck"). Glad to see everyone is on the same page.

Mid-Morning Report

Drs H and L stopped by this morning and the consensus is that we have another night in the hospital ahead of us. Dr H repeated that everything looked good and that she doesn't expect anything to come out of the path report (we should get this by Friday). Dr L says that the infection has definitely come down and is even wondering whether there is any pooling at all.

We are still scheduled for an ultrasound around noon to determine if there is any fluid. A doctor from the infectious disease area is going to check on Lynn this morning as well as coordinate with Dr L about treatment. If everything goes well, we go home tomorrow with oral antibiotics (in addition to the other medication) and call it done.

We're both exhausted. I think it's time to be done. After a few weeks we'll see where we are, but we're very close.

Top o' the Mornin' to Ya

Ok, so that should have been yesterday's title, but better late than never.

Lynn slept well last night which is great news! The blood pressure is a bit low this morning, but they don't seem as concerned as yesterday. They took more blood to monitor the infection this morning (we expect to see the infectious disease guy this morning). Dr L came by late last night to check in and give us the full scoop (not too much more than we already knew). The big hope is that we don't need to remove anything (or if we do, that we can just swap in the implant and then be done with it.

The pain level is ok, but after a good sleep she has not been able to administer her pain medication. That is being rectified now and we are settling into our day. We have an appointment at noon to get an ultrasound of the radiated area to see if the infection is pooling at all. If it is, then they will aspirate the area and analyze the sample.

Thankfully I am "working from home" today and tomorrow. I hope to have Lynn home by tomorrow.

End of Day 1

Calling it a night. Nausea is keeping Lynn awake. 8 mg of Zofran later and still nausea. I think she's just going to have to ride it out. That's gotta suck on top of abdominal work, but she says the pain is not too bad (has been between 2-4 on the hospital 10 scale since surgery). They need to find a way to remove the nausea side effects of anesthesia. Like now.

More tomorrow--Have a good night everyone.

Dinner and a Movie

We are now nicely settled in the room. The nurse was nice enough to suggest I take part in Lynn's meal. So it's a sandwich, soup, jello and herbal tea. I will probably try and take off after the doctor swings by, but perhaps after dinner instead. Lynn is doing much better. Still a bit groggy and some nausea but that's why there are drugs.

Dr H just stopped by and said to expect two nights in the hospital. She also reiterated that everything went really well and that the big focus beyond healing after the surgery is the antibiotics and the inflammation on the right side. Dr L is now playing point on that.

Special Note: If you ever find yourself caring for someone at a hospital, always find out who the head nurse is and make sure they know who you are. There is no one better to have at your side when you need something than them.

Bubonic Plague

I have tracked down Lynn. She is doing well, but very groggy. She's had some slight nausea which we are hoping goes away fairly soon. The one interesting thing is that she's currently sharing a room. The women in the same room seems to have some sort of lung issue as she's coughing regularly. She says it's not contagious which makes me think of lung cancer. Sigh.

We are in room 1060 for now, but I expect that to change. Looks like we are definitely here one night.

UPDATE: It pays to remember people. The head nurse moved Lynn to a private room (1065) for the night. It was the last room they had so I'm glad I asked.

Pain Management

Still have not seen Lynn. The volunteer here called and they said she is still in "pain management". What kind of place is that? That worry that had so quickly dissipated is now back. The white horse is stamping his feet in the stable. I'm going to see if I can reach a doc to explain to me these complex terms of theirs.

UPDATE: She has been moved to a room (shared room) but the "pain is under control". I should be allowed to see her momentarily (some report has to be filed). Powering things down to go see her.

What the...? (Part 2)

Dr I just swung by and gave me an update. He has confirmed that it is definitely an infection. His hope is that it's just a pocket (as Lynn has not been feverish at all) that can be aspirated and also hammered with antibiotics. The big hope here is that this can be contained without having to remove the spacer on that side.

Final Surgery Update

Drs H and W came in to talk with me just now. They said that from their end everything looked good. They took their time to be sure that everything went well and didn't have to make any other incisions. Their consensus was that Lynn showed no signs of any other cancers in that area (the "wash" path report will confirm that there is indeed none).

They also expressed concern about the radiation area. Looks like she should be out by tomorrow morning sometime, but that the secondary infection might keep her in for another day. Drs H and I will be visiting later today to check up on Lynn. I will send an update out once we are in a room.

What the...???

Dr L came out to chat with us about Lynn (yes, he was only supposed to visit today, but this is Dr L, so...). He said he spoke with Drs I, H and W about Lynn and he's concerned about her. The irritation on the right side that we thought was just residuals of the radiation might actually be an infection. He is going to make sure she gets antibiotics and he thinks she is here overnight at least.

He is hoping that with antibiotics that the infection can be contained (if it is indeed one). I got the impression that his concern is not just about infection and fluid pocketing related to it but also about having to remove the implant on that side completely. I hope that this ends up being nothing. Possible ultrasound tomorrow to check for fluid.

Still no word on Lynn or on Dr H about how things went with the surgery, but I will update when I can.

Quick Update

Service desk called and said everything is fine and the doctor will be up to see us momentarily. YAY!

Time Keeps on Tickin....

It's a bit after 10 and still no word yet from the doctors. Makes me nervous. Could be nothing. Could be a whole lot. Sigh. Worried about her. I am just fretting in my out loud voice again. It's only 10 minutes.

Deja Vu

Here I sit again at LFH waiting for Lynn to return. This time I got to follow Lynn into the recovery room, but after that they kicked me out. Finally got to meet Dr H. (yes, after all we've been through, the person who started us down this path--better late than never).

You have all the details. Suffice it to say, we're both tired and are hopeful for a simple surgery with negative pathology results so that we can begin down the final road of full recovery. Dr H says she'll be out to see me by 10am. I guess the recovery time is longest.

The Breach, Again

Zack and I are returned from our very rejuvenating vacation in New York. We're still digesting all of our NYC faves (pizza, Chinese, bagels, pretzels, pastrami, and, of course, a black and white cookie). We saw theater, movies, and museums - we are so full of culture we could be yogurt. Our very favorite moment: during the curtain call for Patrick Stewart in Macbeth (just as fantastic as it sounds), a guy to our left yelled "Bravo, Captain Picard!" Yay, trekkies!

So, here we are now at the watershed moment. Tomorrow will either be the first day of the pure prevention phase of my recovery, or it will be the first day of treatment for a new kind of cancer. I'm daunted by both options. On the one hand, I've gotten so used to being a full time patient that it will be strange to start making other sorts of plans. Sortof like being a Chicagoan in February - intrigued by the idea of spring, but skeptical that it could ever really happen. On the other hand, holy crap. Chemo, again. Radiation, again. Bucket day, again. Bald, again.

The craziest part, though, is that whichever way tomorrow goes, I know we can make it. We've got each other, our families, our friends, and a great medical team.

Zack will bring a computer tomorrow, and plans to post once I am out of surgery. If all goes well, I'll be home tomorrow night. For tonight, Zack and I are going out to dinner and celebrating. A little Italian, a little vino, a little fantasizing about the summer...nothing of consequence. Hey, we're still on vacation!