Happy Thanksgiving!

Wishing everyone a safe, blessed and peaceful Thanksgiving. There is much to be thankful for: Family, friends and even our pets! Of course, I can't leave them out. Enjoy!

So neglectful

In my mind I assume the entire world is on Facebook. I am on there regularly (okay, what I really mean is TOO MUCH!) and I completely forget about my blog. I forget that people read blogspot and not necessarily Facebook.

I have had trouble getting into a healthy, consistent routine since returning from Pennsylvania in August. I have been very apathetic about everything. I see my shrink later this week as I have been told that apathy can be a side effect of the meds I'm taking.

Good news: I am doing freelance transcription work. I got the all clear on my annual PET scan earlier this month. YAY and praise God for both things!

My sister Van visited at the end of October. We walked for the American Cancer Society's Making Strides 5K and got in some nice beach time. Becky came to visit towards the end of Van's visit. I really enjoyed their company. It was fun!

The holidays are quickly descending on us and I am already starting to get a bit blue about all of it. Missing my brothers John, Ed and my folks. The holidays just seem to intensify the loss. I'll figure out a way to muddle through it.

I have a lot of catching up to do on those of you who blog here. I've missed reading about how you are all doing! :(

P.S. I've added a "captcha" step for posting comments. I think we can all do without the Viagra spam. :P

Bon Voyage!

My niece Marissa left for Spain on Monday. She's on a scholarship to teach English in middle school. She'll return sometime next June. She hopes to enter graduate school not too long after. I'm sure this is going to be quite an adventure for her!

Also on Monday, I brought Stella to the vet. She had some blood oozing from her scar, not a lot, but it concerned me. In addition, I was concerned about a thick lump that my sister-in-law Linda discovered next to the scar. Fortunately the scar is okay and the lump is a hemotoma from the surgery. Another sigh of relief.

This weekend I'm going up to the Villages. My friend Maxine arranged a mass for John Saturday evening.

Good news!

For a change.

Stella's mast cells came back as grade 1, thank you Jesus! Benign would have been the best outcome, but this is second best and I am grateful. We just have to be on the lookout for any new growths. I was literally making myself sick with worry. I couldn't take another piece of bad news.

Linda came with me to my oncologist appointment yesterday. Everything went well. He congratulated me on 2+ years post-lumpectomy. I'll continue to see him every 6 months. I asked him about having my yearly PT scan, but he said I don't have to have it, but if it would give me piece of mind, he'd order it. I opted to have it done next month.

Marissa sat with the dogs while we were gone. Thank you!

Is it the middle of September already?

Stella's doing well. She's eating, drinking, pooping, peeing. She still is moving a little gingerly and I have to keep her from licking her scar, but she's good. I give her a pain pill once a day and an antibiotic twice a day. She really doesn't seem to be in pain, so she may not need the pain meds tomorrow. I hope and pray she will be fine going forward.

Thursday I have my long-delayed appointment with my medical oncologist. I have an MRI scheduled for early December and I should have my yearly PET scan in October. I'll ask him about that.

I was worried about leaving Stella since I'll be gone for 2 or 3 hours, but my sister-in-law Linda will come over and hang out with her. THANK YOU!

Now the wait

Back home with Stella. She has a big, ugly scar with lots of stitches. He removed 3 other growths near the one bad one. Hopefully they are just fatty tumors. Histopathology report should be back by Friday. Now we just have to wait. I'm not very good at that. :(

Out of surgery

Stella's out of surgery. She did well. She was going to be ready to go home at 2:00, but I want to speak with Dr. Bailey, so they told me to come at 3:30. He removed 5 growths. I don't know if he thought they were all mast cells or not, which is why I want to talk to him.

Trusting

I dropped Stella off at the vet's this morning and spoke to the doctor briefly. They will call me when she's out of surgery. They probably won't release her till the end of the day. I'm a nervous wreck, but trying to trust God. Sigh.

Waiting for rain, sweet Vinnie and Stella stuff

A lot of rain is in the forecast today. I hope it starts soon so I have an excuse to crawl into bed and read a book. C'mon rain!

Picked up Stella Thursday afternoon. My vet says a bump we have been watching for awhile looks very much like a mast cell tumor under the microscope. Another one looks suspicious but is inconclusive. The other ones look like normal cells. Mast cell tumors are a very common type of skin cancer in dogs. Usually, surgical removal is the only treatment needed. They tend to continue to pop up so the ongoing treatment is to remove them if and when they do. He believes the cells are a grade 1, which would be great, since that has the best prognosis. We won't know for sure until it's removed and pathology takes a look. I'm very worried, but yesterday the vet called me with the results of the bile acid test and although it was elevated after the test, he consulted with a specialist who said she considers the level to be in a safe range. One of the things my vet was concerned with was the possibility the liver was involved with the skin cancer. The specialist assured him it is highly unlikely this is the case. She advised him to remove the mast cells, see what grade they are and retest the liver enzyme in 6 months. I am feeling a little bit better about it all. Stella has surgery Tuesday. Please keep her in your prayers!

Today is a sad day. Joe's family's Italian Greyhound passed away around 1:00 a.m. this morning. He just turned 14 last week and his health had been failing for quite some time. He spent the last 2 weeks sleeping a lot and not eating or drinking much. The dogs and I saw him Thursday and yesterday. He was a sweetie and Stella and Bella have known him since they were born and they loved him. We will all miss him. :)

Blue

Time flies. I can't believe it's September 9th already. I also can't believe I haven't posted here since August 26th.

I've been kind of blue lately. Not exactly sure why, but I just am. I've been busy with Inspiretees. I like working on the site. I'm learning a lot about managing a website. I'm thankful for the opportunity.

Stella goes to the vet tomorrow for a bile acid test. One of her liver enzymes is elevated. She has to fast for 12 hours. A real challenge with her appetite. The doc will draw blood then feed her something high fat, and several hours later, draw blood again. She is also developing a lot of little bumps under her skin. So between these two things I'm nervous. My little pumpkin.

P.S. I just realized something. Today is 09-09-09. Weird.

Two years and counting

In the midst of all that happened this summer, I almost missed a milestone. My breast cancer surgery was July 2007 so I have passed the 2 year mark. Had a mammogram earlier this month, all clear. Saw my radiation oncologist who told me since I see my medical oncologist and surgeon regularly, there is no need to see him going forward unless I'm having issues related to radiation treatment. I see my medical oncologist next week and my surgeon the week after. Sometimes I feel as if it's been many years since diagnosis and treatment. Needless to say, I am grateful.

My friend Joyce accompanied me to South Florida this past weekend. We visited with my cousins and Aunt Jean and Uncle Sam. I also finally got to meet Grace, my cousin Kimberly's baby. What a cutie. She has quite an intensity about her. Very observant. And very cute.

Monday I had my appointment with the Italian Consulate in Coral Gables. I submitted my translated and certified long form birth certificate. In a few months I'll receive my certificate of Italian citizenship and can then apply for an Italian passport. Funny, since I don't even have an American one! And who knows when or if I'll ever make it to Italy. At least I'll be prepared.

Marissa heads to Spain for a year soon. She'll be in Toledo teaching English. She's pretty excited about the whole thing. When she comes back she wants to look into grad school, maybe Penn State. My youngest niece started her first year at University of South Florida in Tampa, the same school that Joe, Angela and Marissa attended. She actually had enough credits to enter as a sophomore. Our little girl is growing up! :(

Oh I have been so remiss

Thanks Rachel, for nudging me to update my blog. I am spending an inordinate amount of time on Facebook, therefore neglecting my blog.

The trip back from PA was uneventful, but it was LONG. Jeff, Lili and I stopped often for the dogs (and us). Levi did better than the trip up, but cats really don't travel well. At least not in my experience.

While in New Castle, I hooked up with an old friend who has been expanding her business. I think I mentioned this in a previous post. I am working as her PR person and we've got a lot of avenues we're pursuing. Check out the link to her website here.

Keeping busy is helping me work through the grief of losing my brother. If I dwell on things too much, I can get really down. Everyone's prayers, encouragement and support has been vital to my emotional, spiritual and physical well-being. Thank you. xo

Finalizing plans....

to return to Florida. Jeff and Lili will drive back with me and the critters on August 4th. They'll have a few days for sun and beach before flying back the following Monday.

I have accumulated a bunch of stuff as my one month visit grew into five. I've accumulated lots of mixed feelings too. I am, however, anxious to get back. Need to settle into a new routine, take care of my house, yard and reconnect with family and friends in FL. I also have a slew of doctors' appointments and a mammogram spread out over 2 weeks. It will be very hectic which will be good for me.

I'm stepping into a business opportunity with a friend looking to grow her inspirational tee company. I have a link to her site on the right, but you can also go here to Inspiretees. She's here in Pennsylvania but I'll be able to do my thing in Florida or wherever I hang my hat. I am still very restless so where I end up is anybody's guess.

Eddie Jr.

Today, July 22nd, marks 22 years since my oldest brother, Eddie, lost a brief but excruciating battle with cancer. I really, really miss him. And of course, my brother John is always on my mind. The death of a loved one is such a deeply profound loss.

I didn't get to sleep until 3:30 last night then dreamed of Eddie. He had cancer in my dream but he was functioning and pretty much himself. I dream of my folks often. In some way it's comforting, but in another it's sad.

Well

I still don't feel like posting, but I'll try.

I've been trying to keep occupied. In various ways. Going to Presque Isle (Lake Erie) about once a week. Went to see a local production of "Fiddler on the Roof" which was very good. Bible studies, church, family and so on. Jeff, Lili and I are leaving for Florida August 4th. With the dogs and cat in tow. I've accumulated a lot of stuff in 4 months so it looks like I'll be renting a minivan again. Jeff and Lili will stay in FL until Aug. 10th. They need a fun break.

Hope everyone is having a nice summer.

Sigh

Once again, I don't feel like posting. I'll try to update this later.

Sisters Day

I still don't feel like posting, but I have 26 minutes to get a post in before midnight, therefore, keeping my promise.

I have been trying to keep busy. On Thursday Van, Anita and I had a "sisters" day. We went to Pittsburgh....shopping and lunch. Went to The Waterfront in Homestead, had lunch at P.F. Chang's, went to South Side Works, had dessert at The Cheesecake Factory, then went to Station Square, then finally on the way home stopped at my nephew's house to wish Steve's and Kim's son Matthew a happy 3rd birthday. I was tired, but we had a nice time. Friday Van and I went to see my friend Denise. Had lunch, went to Wal-Mart and had a very nice visit. Today Van, Aunt Esther and I went to New Wilmington to spend the 4th of July with my Aunt Anita and Uncle Arthur, cousin Fred and his family. It was also Aunt Anita's 90th birthday today.

So, like I said, trying to keep busy and trying to figure out how/when I'm going back to Florida.

I promise...

...to post something on here tomorrow. And reply to a bunch of emails waiting in my inbox. Not motivated to do much of anything.

Homesick

I really haven't felt like posting much lately. Yesterday Van, Becky and I went to Lake Erie for a needed distraction and a change of scenery. The weather was good, a bit hot, but good.

I'm still going through my mini-crisis of faith, which happens EVERY time I lose someone close. I usually need reassurance from others and I often read some type of Christian apologetic resource to bolster my faith. I've started reading a book by William Lane Craig, who is one of the best defenders of the faith out there. It's a bit of a heavy read....Craig delves into the thoughts of the great philosophers (Sartre, Kierkegaard, John Locke, etc.). He also employs the use of probability calculus, inductive and deductive logic and other methods of reasoning to show that the Christ of the Bible is who He says He is. I am enjoying it immensely. If you are unsure of Christianity or would like to have some "meat" to back up your faith to others, I recommend this book. You can also visit Dr. Craig's website by clicking on this link: Reasonable Faith or read more info about the book at this link: Reasonable Faith Tools.

These past days I've been thinking a lot about heaven. A song by Mercy Me, a Christian group, has lyrics that always get to me. The song is called "Homesick."

You’re in a better place, I’ve heard a thousand times
And at least a thousand times I’ve rejoiced for you
But the reason why I’m broken the reason why I cry
Is how long must I wait to be with you

I close my eyes and I see your face
If home’s where my heart is then I’m out of place
Lord won’t you give me strength to make it through somehow
I‘ve never been more homesick than now

Help me Lord because I don’t understand Your ways
The reason why I wonder if I’ll ever know
But even if You showed me the hurt would be the same
Because I’m still here so far away from home

In Christ there are no goodbyes
In Christ there is no end
So I’ll hold onto Jesus with all that I have
To see you again

Written by MercyMe and Peter Kipley
©2004 Simpleville Music (ASCAP), Wet As A Fish Music (ASCAP) and Wordspring Music / Songs From The Indigo Room (SESAC)

Thank you

So many people have comforted us this past week. We've received cards, emails, notes, prayers, a lot of food (it kept coming all week) and love. We are grateful.

The memorial service was very nice. The military honors were very touching. We played on of John's favorite songs, "Blue Sky" by the Allman Brothers Band. The church has been very gracious and Father Denny celebrated a beautiful mass. He was so good to John, visiting him wherever he was...nursing home, hospital, Greer House. The church members always provided John with fresh flowers over the past several years. Trinity Episcopal Church has been a blessing to John.

It was especially nice to have our cousin Diane and her son, Shawn, travel from Phoenix to be with us. Their mom, our Aunt Rose, is very special to us. Her health is not great, so they were anxious to come here to honor John. Thank you.

Today was very quiet, which was good. The first quiet day since last week. I can't even believe John has been gone a week already. He is so very missed.

Should I be angry that Steve Jobs received a new liver? I just read about it this morning. He has a form of pancreatic cancer and I read that it had metastasized to his liver. That should have ruled him out for a new liver. I can't help but feel a little angry that he was able to circumvent protocol to get a transplant. I know it's not right to feel this way, but I do.

I am starting to make plans to return to Florida. There are things to do here before I go. It will probably be sometime after the 4th. I don't know what my plans are after that.

I hope all the dads out there had a nice Father's Day.

now what

I wake up in the morning with no nursing home to go to, no Greer House to go to, no hospital to go to. It's a very empty feeling.

We have family and friends all around bringing comfort to us. I think we've planned a really nice memorial service for John.

His obituary can be found at:

New Castle News and William F. and Roger M. DeCarbo Funeral Home.

I talk a good game

What comes out of my mouth (and typed from my fingers) is often different than what's in my heart. I seriously struggle with my faith when I lose someone close. I ask a lot of questions...what is life all about....why is it so hard? Is there really a heaven that's beautiful and eternal? Hard to imagine when we look around us. Then I do the "what ifs" in my head. What if John would've had interferon treatment years ago? What if he wouldn't have broken his hip? What if SOMEONE would've tapped him these past several weeks? I think that's the toughest one for me right now. He desperately wanted tapped and he would've felt immensely better if that would have happened. He would have moved around a lot easier and gotten stronger. It was so incredibly hard to watch him get upset when it looked like it would happen and then it wouldn't. And I would tell him, "They're tapping you tomorrow after they give you plasma!" And then the answer was no. Just not fair. I think he decided to "chuck it" (his words) when we told him his platelets kept dropping even after receiving blood products. He knew then that the battle was futile. I mourn not only for my brother but also for what might have been.

Goodbye for now

My dear brother John breathed his last breath on earth during the early morning of June 14th. I am eternally grateful to God for providing a way for John to return home to his place at Greer House, where he was loved by residents and staff. It was his desire to pass there, the place he called home. He arrived there yesterday, late afternoon, and was conscious enough to know he was home. He slept peacefully through the first night and entered a deeper sleep yesterday morning. It was around midnight or so this morning that his breathing patterns changed and within 45 minutes, he left his earthly body to arrive in the presence of the Lord, where we all will be together again soon. What a day that will be when we are made whole once again, this time without affliction, tears, sadness. Just joy. Amen to that.

My dear brother

All,

John's PCP came in to see him this afternoon and spoke with him privately, then with us. John expressed his wishes to go peacefully. He also told him he would like to die at his home at Greer House, but unfortunately, we don't see how that's possible, which breaks my heart. His doctor told us not to feel bad about that; they will start giving him morphine to eliminate his pain and God will take care of the rest. He is not in excruciating pain, but why not make him as comfortable as possible. He told us that the morphine will speed up things and if there's anyone who wants to see him, they need to do it as soon as possible. Our brother Joe is flying in tomorrow morning. This is very hard to take, but we have been blessed with a wonderful brother and friend. It is a blessing to have him be able to express what he wants. That takes a huge burden off us. We will miss him terribly but look forward to that day when we will all be together again and most especially, with our Lord.

Thank you all. Your kind words, prayers and encouragement are gratefully appreciated, more than you will ever know.

Love,
Susan

So hard

John changed his mind last night and does not want blood, does not want to be tapped, etc. He has fought the good fight. He is a peace with his decision. I am having a hard time. I should be happy for him to go on to be with the Lord, but the feeling of loss is overwhelming.

His kidneys are not functioning very well and we've been told he will probably go into renal failure. When, I don't know, of course. His BP is still low, but stable, heart rate okay, blood oxygen fine. He seems to be more comfortable today and is resting.

Thanks for your continued prayers.

Sigh

After a little bit of optimism last night, John deteriorated quite a bit overnight and this morning. He is still in ICU. His platelets have dropped. They suctioned out at least a liter of old blood from his stomach. His BP is very low and his PCP doctor asked us how far we wanted to go.

As of late this afternoon, there doesn't seem to be much more blood being sucked out of stomach, it mostly looks like typical stomach stuff, so MAYBE his platelet count will increase. He has decided that he doesn't want to be resuscitated if/when it comes to that. I did talk him into accepting blood products in the hope they will still be able to tap him. His BP is still quite low, but blood oxygen levels are good and his electrolytes aren't bad. But he's SO tired of it all. He is alert, very much at peace and not at all afraid. We've been able to spend some time in prayer with him today which included two visits from pastors. I just stopped back here to take the dogs out and feed them. I'll be going back soon and we'll watch the hockey game with him on this little tiny TV in his room. That should be interesting.

Please continue to pray for healing, wisdom and peace. God can still perform a miracle if it's His will. Thanks for your prayers.

Love,
Susan

Scary crazy day

Wow, what a day. In the morning Van and I made a bunch of phone calls to appeal Medicare's denial of John's physical and occupational therapy. That got resolved, yay. He'll be receiving restorative therapy, which means the therapists will work with him in his room, even while he's in bed. This should be significantly easier and if he gains strength he can return to PT.

Then the real fun began. When we went to see John at lunchtime, he was sitting in a chair with a plastic basin. He had vomited old blood (also called "coffee grounds") and the nursing home arranged for him to go to the hospital. He didn't look good and seemed to be having some trouble breathing. He got to the ER and by that time was in respiratory distress. He was sweating and just looked horrible. He was incredibly congested. They suctioned thick mucus from him. His blood oxygen levels were in the 70s and his heart rate above 150. I thought he might croak right then and there. Oddly, his blood work was fairly good. The ER doctor said other than his bilirubin being high, the other liver functions were not bad at all. His platelets were 56K, which is higher than they've been in quite some time. And his lungs are clear. He was admitted to ICU. After they got him settled they put him on a bi-pap machine to help him breathe better. His heart rate slowed down and his blood oxygen levels were back in the 90s. Whew. Later this evening, he was breathing much better and they removed the bi-pap for awhile but will use it again during the night. His heart is still elevated, around the 120s, but better than before. The ICU nurse suctioned him and got nearly a liter of old blood from his stomach so she inserted a NG tube to continue the suctioning. The blood thing can happen with liver disease. The good news is they are going to tap him tomorrow, THANK YOU JESUS. I told the pulmonary doc that no one has wanted to tap him, but he said, "They'll do it. There's more than one way to skin a cat." They gave him vitamin K and plasma to thicken his blood. His platelets are good to go if they remain where they are now.

So the poor guy had a rough day, but tomorrow should be better for him.

Hockey Night :-(

Forgot to post last night. John is actually doing a little better. Yesterday he lost the 2 pounds he gained after getting blood products plus one more. And today he lost 4 more and a 1/2 inch off his belly. Yesterday we talked with the dietitian and he'll now get 6 small meals/snacks (they talked about doing this before). The only thing that needs to be pureed is meat. So he can have cereal, grilled cheese, PB&J, etc. I think he'll eat better just because things will taste better.

Last evening he remained awake and alert and tonight he watched the hockey game (such as it was) until 10:00. I've noticed that as long as there is something for him to do, he can remain alert and not feel the need to sleep so much. The fatigue is part of liver disease, so his energy level is always low.

Today I got him a couple of resistance tubes and a light hand weight. I told him we were going to start exercising! He needs a lot of motivation. Don't think I mentioned it here, but his physical and occupational therapy have been discontinued because he wasn't showing much progress. I've got a call into the insurance company to appeal it and hopefully get him back on it again now that he's losing the excess fluid. He REALLY needs to continue the therapy.

Thanks once again for your prayers! xo

Tired!

John was a lot more alert today, but his skin is really yellow. His bilirubin must be up. And I can tell he's really aged in the past few months. He's eating slightly better but is generally very tired. I know I'm exhausted so I can't even imagine what it's like for him.

I know there was something else I wanted to post but now I can't remember it.

A long long day

Yesterday John was in a decent mood and not too uncomfortable. He had dropped 3 pounds and stayed awake for most of the hockey game, which may have been helped by the iced coffee I brought him.

This morning he went to the hospital for blood and platelets. I got there about 15 minutes after he did. He was sleeping. They hadn't started the blood transfusion. They finally did around 10:30. Those units drip very slowly. He was still being transfused at 2:30, was uncomfortable and very tired. He received platelets much later in the day. Around 5:30 or so they drew blood to check his blood counts. The nurse was to call John's PCP with the results before releasing him. It didn't take too long to get the results back, but the nurse tried reaching the doctor for about 45 minutes...paging, answering service, cell phone. Unusual because he usually returns calls pretty quickly, but hey, the guy probably has a life. Anyway, he called back and said it was okay to send him back to the nursing home. It was 7:30. John was totally beat and out of it. I felt so bad.

He's still losing weight...lost 4 pounds since yesterday and 2 1/2 inches off his belly. I hope it's the excess fluid. He is barely eating and I hope that's not why he's dropping weight. The downside to the heavy diuretics is they can be dehydrating which makes it pretty hard to start an IV. I could tell he was not having fun. Ouch.

I have an appointment with my ENT Monday. Last week I popped my jaw and it REALLY hurts. I don't know what I did. I was hoping the pain would subside but it hasn't at all. It does force me to chew slowly when eating and that can't be a bad thing, right?

An active Monday

So yesterday John was sleepy and having a hard time getting comfortable. He hasn't been eating very well. No appetite with the stomach the way it is.

Today's happenings:

His weight was 211 this morning. Thursday he was 213, Friday he was 216, Saturday 213, Sunday 213, today 211. I hope this indicates a downward trend, but I'm not convinced yet, since the weight loss could be due to his low caloric intake.

As for his diet, I know he's to keep below 2 gm of sodium (2000 mg). I spoke with the dietitian last week and she said they remove all lunch meat and other high sodium meats from his diet, but I really don't know his entire sodium intake, although it can't be too much because he's eating so little. I think he's getting enough fluids.

Today he told me he walked a few steps in physical therapy. I was pleasantly surprised to hear this since he seems so weak. His blood work from today shows his platelets at 19K, INR 2.7, but his electrolytes are perfect. They faxed the results to the hepatologist so we'll have to see what he wants to do next. Darryl's wife Laurie (a nurse) suggested he get another x-ray on his hip. He hasn't had one for some time so it will be interesting to see if the hip fracture has healed finally. Since his platelets are pretty low, his PCP ordered a blood transfusion. He'll get that Wednesday.

Lili's procedure went well. They removed a cyst and found a lot of endometriosis. Her throat is still sore from the breathing tube. She's coughed all night the last few nights. The doctor said it should get better in another day or two.

Today my great-niece turned 5. Happy birthday Mackenzie! xo

Up and down

I wish I understood what's going on. Yesterday John was up 3 pounds and today down 3 pounds. I don't understand. He had a rough day today. His back hurt, his hip hurt and his stomach hurt. He had reflux all day, too. Hardly ate anything. When I left this evening he wasn't really interested in watching the Penguins. I hope he has a restful night.

We started packing John's stuff from his apartment at assisted living. We'll put everything in storage with the hope he'll go back there if he gets strong enough. He doesn't know this. We didn't have a choice because he can't afford both places. Hate this.

So frustrated

I wish I knew what we should do. John has actually gained weight and girth. How is that possible with the high doses of diuretics? The hepatologist finds that hard to believe. I know the way he's weighed at the nursing home lends itself to deviation. It's not a scale you can sit on which for him would be more accurate. I just wish he could be tapped. He has a hard time getting comfortable. After dinner especially.

The doctor wants him to stay on the diuretics. Monday he'll be weighed and have lab work. Pray that he loses this abdominal fluid. If he doesn't, I want UPMC to tap him since they've done it before. I just don't know how to do that since he has a new doctor at a different facility. This is so hard.

A tiny improvement?

I completely forgot to post here yesterday.

There are indications that John is losing some of the fluid. The sodium level has changed but I can't remember if it's increased or decreased, but his nurse told me it's moving in the right direction. She also said his stomach is not as taut and the skin isn't shiny like it has been. He has actually gained a few pounds, but that doesn't mean he isn't losing fluid. She was waiting for a call back from the hepatologist, but I haven't heard anything yet as to next steps. Maybe he'll just remain on the diuretics a bit longer.

He was dressed and in a chair at lunchtime, but is still very tired. The speech pathologist saw him and is upgrading his diet so that is good news. I believe he was going to physical therapy after lunch. I'm sure he can't do much, but a little is better than nothing.

He really enjoys the extra visitors he's been seeing, our cousins Tom, Darryl and Cathy, to name a few. It perks him up a bit.

I called UPMC yesterday inquiring about official notification of their denial. They said a letter was mailed to the assisted living home on the 19th. I had checked his mail last week and it hadn't arrived yet, but last night I checked his mail and it was there. They listed "co-morbidities" and deconditioning as the reasons. The co-morbidities I assume refer to his closed head injury and hip problem. The deconditioning I understand, but the other 2 I don't. The letter also alluded to the possibility of reconsideration if his condition improves, but I'm not optimistic UPMC will change their mind. We have to present John to AGH in a different light. His records from Phoenix should help and so should engaging in more conversation with AGH than we did with UPMC.

As always, your prayers and encouragement are greatly appreciated. Also keep Lili Rose (Jeff's wife) in your prayers. She is having a laporoscopic procedure to look at and/or remove some uterine fibroids tomorrow morning. xo

My head is spinning

Today Anita, Van, Jeff and I met with John's PCP. We had a long discussion about UPMC, AGH and what to do going forward. I'm confused. One thing was cleared up...he thinks UPMC rejected him because of his head injury. Makes no sense. He has been functioning for 20 years and doing just fine until the cirrhosis kicked in. His PCP said John's kidney, heart and lungs are fine. What gives?

The other thing we discussed was the issue of the abdominal fluid. No easy answer here. AGH says no radiologist will attempt a paracentesis with platelets below 70K. His platelets haven't been above 70K in years and he's been tapped several times. The hepatologist at AGH wants to control the fluid with diuretics which can cause its own set of problems. Today he increased his Lasix to 80mg and Aldactone to 300 mg. I was visiting John this evening and he was peeing like a racehorse (pardon the expression). MAYBE this will work. I told him he was going to feel miserable for a couple of days until this fluid lessens. He needs A LOT of encouragement right now.

Not much has changed...

...unfortunately. John is still miserable, tired and I think depressed. It looks like he may have lost a couple of inches in his belly, but measuring is not the most accurate method. They'll begin weighing him tomorrow.

Another long and frustrating day

John is back at Golden Hill. I'm too tired to get into too much detail here, so I'll make it short and write more tomorrow.

After platelets this morning, his platelet count was still too low. His INR was good, but the low platelet level made it too dangerous to do the parancentesis. He was not happy and neither was I. I asked the doctor on the floor to page John's (new) liver specialist. He talked to me for about 15 minutes, explaining things and answering my questions. The plan right now is to aggressively drain the fluid via diuretics. He increased the dosages of the 2 he takes, Aldactone and Lasix. On Tuesday or Wednesday he'll be weighed. If he's lost weight, great, but if not, the doctor will increase the doses and will continue to until he's maxed out. I am praying he drains before it gets to that point. If it doesn't work, there may be an option or two, but clearly the number of options available is diminishing.

Another long day

John was at AGH by 7:00 a.m. Van and I got there at 10:30. They started giving him plasma after we got there (why not earlier, I don't know). It was mid-afternoon and they were about to begin platelets, but a GI doctor came in to see him and decided it was going to be too late to tap him today. So he was admitted and at 5:00 a.m. tomorrow morning they'll give him platelets, check his blood work and I'm praying it will be good enough to do the paracentesis.

We thought it would be a great idea for him to have a milkshake since he's moved up the food chain. He enjoyed drinking it, but about an hour later he was extremely sick. It took an IV injection of Zofran to settle his stomach. And puking helped, too. Zofran is a great drug for nausea. We felt terrible he got so sick. No more milkshakes for awhile. Around 6:00 p.m. he was moved from the short stay unit to a regular room. He was finally comfortable by the time we left at 7:00.

At AGH

We are still at Allegheny General. He got here at 7:00 a.m. this morning. He's been receiving fresh frozen plasma. They are not going to be able to get platelets into John in time to tap him today, so they're going to admit him and give him platelets in the morning, check his blood, then hopefully tap him (paracentesis is the medical term). This really ticks me off because he's so, SOOO uncomfortable and he should have been admitted Wednesday. With God as my witness, these delays WILL NOT happen next time.

Frustration

It took several phone calls this morning to ensure John will be getting his stomach tapped Friday. He was very, very tired today and very, very uncomfortable. He should feel much better not too long after the procedure tomorrow. Praying he will.

I hate hospitals

Gee, how do I describe this day?

This morning Van and I met John at the hospital as he was to get his stomach tapped. When we got to the short stay unit, the nurses told us the procedure was cancelled because his INR (International Normalized Ratio) or simply a type of clotting factor was not in the safe range. The higher the INR is, the greater the chance of abnormal bleeding with a procedure. Most doctors prefer an INR of 1.3 - 1.5. John's was 2.1 and that actually is acceptable in some cases. In the past, it has been well over 3. He's been taking vitamin K and that has helped keep it lower. But apparently radiologists have a higher threshold and wouldn't do the procedure. This has happened before at the local hospital. John was SO upset, he was sobbing. It was awful. I called John's PCP and told him we wanted him to go to AGH today. The last time this happened we waited a day or two to give him blood products and they still wouldn't tap him then it became a very critical situation. I wish we would've arranged for him to go to AGH in the first place. I sort of got all radical (no yelling or swearing) and I guess I was circumventing the process, but everyone did what they could to get him to the AGH ER. SOOOO, Van called off work and we get there and the first doctor who saw him was very kind and helpful. Then we saw the attending ER doc and he had the bedside manner of a ROCK. Rude, very UNhelpful. John actually gave him the Italian salute as he was leaving the room. Too bad he didn't see it. He basically told us that the ER would not tap him and he wouldn't be admitted for blood products. To make a long story short, the ER did contact the liver specialist and he will be tapped Friday. We complained about the attending physician to someone and they said he would soon be going to a different hospital. Good for future AGH ER patients but I feel bad for the patients at whatever hospital he's going to.

So it was a return trip from Pittsburth to the nursing home. This was at 3:45 in the afternoon and this all began about 9:00 a.m. this morning. By the time John got back to the nursing home, he was in a better mood. We did have some good news today- he's graduating to soft foods. He received a dinner tray upon his return and he really enjoyed it. Mashed potatoes and some sort of meat...chicken I guess. He was comfortable when we left. Tomorrow I'll check on him at lunchtime then return in the evening with the dogs and watch hockey with him. And now I am going to bed.

How about some real food?

Sorry I haven't felt like writing a whole lot here lately. I just have enough wherewithall to post "highlights."

John had the barium swallow today, but we don't know the results yet. He thought it went well, but we'll know for sure tomorrow. I know he will be much happier eating solid food. He gets his stomach tapped tomorrow and I'm praying he won't need blood products and that they will remove all the excess fluid.

Not sure if I've mentioned this yet, but John has an appointment with a liver specialist from Allegheny General Hospital on June 23rd. We requested (and received yesterday) all his records from St. Joseph's in Phoenix regarding his head injury in 1989. About 172 pages and reviewing it was like a walk down memory lane. I hope the info paints a clearer picture of John's "normal."

Improving slightly every day

John is having a follow up swallow study tomorrow. He gets his stomach tapped Wednesday. Wish it was the other way around. He is very uncomfortable full of fluid. Again, he seemed a little bit stronger today. He is definitely making progress, although slowly. We have a family conference at the nursing home Friday. I'm hoping he can go back to assisted living in the near future. I know he would like that. But we just can't look too far ahead right now.

Slow news day

No more bleeding, thank God. John is really getting tired of the liquid meals. He complained to the staff this morning. It's good that he has an appetite. I hope his PCP sees him tomorrow so he can get his stomach tapped. I'll write more tomorrow.

One day at a time

John continued to have hiccups last night and around 11:00 p.m. he had bright red blood in his mouth. The nursing home called Anita and she met them at the hospital. He didn't want to go; didn't think it was a big deal. Fortunately, his platelets were okay and the bleeding was very slight, so they gave him vitamin K (to help with clotting) and sent him back. I saw him around lunch time today, he was okay and wanted to sit on the edge of the bed to "eat" his lunch. Still clear liquids, lemon ice and jello. I advised him to stay seated upright for at least an hour after eating (thanks for that advice, Karen). I went back in the evening with the dogs. He had dinner then we went to one of the lounges to visit. I know he'd like to eat solid food and he has an appetite, so hopefully next week he can begin the transition to solid food.

Tiny steps

Saw John this morning while he was in PT. He seems a little stronger every day. He was catching and tossing a beach ball. He would not have been able to do that a week ago. In the evening he was chatting a bit and watching TV.

He seems to be tolerating the liquid diet. Of course, he could still be aspirating without any symptoms. I'm anxious for him to have the follow-up barium swallow. I'm terrified he's going to get pneumonia. After tonight's "dinner," he had a terrible case of the hiccups and some heartburn. Between that and his swollen belly, he was very uncomfortable. He had a scheduled dose of Zantac at 9:00 p.m. so that should help. And it's time for another stomach tap. That will probably be early next week.

The plan...for now

Last night...tossing around ideas with my sisters...trying to figure out what is the "right" thing to do. And not having a clue.

John has an NG tube because he is silently and not silently aspirating. He has had trouble eating and drinking since his head injury 20 years ago. He is miserable with the tube. His mouth and throat are dry. The wet swabs aren't cutting it anymore.

John has an appointment with Allegheny General Hospital June 23rd. The outcome may be the same, but it's worth a try. He still doesn't know about UPMC's decision. We don't want him to give up. I called his primary care physician this morning. Spoke with his nurse and gave her the latest news. I asked if we could remove the tube and let him start drinking and eating again. When I spoke with the doctor later in the day, he said he could remove it, but we have to understand he could aspirate which could cause other serious problems. We told him to go ahead and remove it. John understands the risks. Now we're praying he doesn't aspirate and get pnuemonia. So late afternoon it was removed and he was able to sip iced tea, broth, apple juice, ginger ale and some lemon ice. He looked so relieved. It perked him up quite a bit. The speech therapist will be able to more easily work with him and he will have another swallow study Tuesday. He was pretty weak with the first one and not that he's still not weak, but he is a little stronger. I hope we made the right decision.

Bad day

As I was entering the nursing home this evening and about to say hi to my sister (she works in the office 3 nights a week), my cell phone rang. It was John's liver specialist. I asked why he was denied and he said that they look at the whole picture. The effects of his past head injury, the hip fracture that never healed properly and the deconditioned state he's in led to the decision. He said a transplant is not an option for John. He said he will still care for John if we want. I asked about continuing stomach taps and blood products and he said we need to discuss with John whether to continue these things or discontinue them and make arrangements for hospice.

I didn't want to tell him this news today. Every time I look at him I start crying. He was having a hard time getting comfortable then I realized he was crying. He's frustrated and tired of all this. So we both cried.

Tomorrow I'll ask his PCP what he thinks. He has been very good with John and is very compassionate. If John wants to, we can connect with AGH again for a second opinion. It's hard to know what to do, but I do know one thing. Life is not fair.

Very disappointing news

I called UPMC's transplant coordinator this morning and was told they declined putting John on the transplant list. Talk about the wind being let out of your sails. She said we should make an appointment with John's liver specialist for details and who knows what else. I don't know what options, if any, are available. He already has an appt. next Wednesday the 20th that was put on hold, so I called the office and asked if we should keep that one. Haven't received a call back yet. I guess we can try Allegheny General Hospital, also in Pittsburgh. He was an inpatient there in January. They have a liver center that's been functioning for about a year. Maybe they take more high-risk patients. Then again, I thought UPMC was known for that.

I'm still not sure what the specific reasons were for denying him, although his current state of weakness is one. I asked if he could be presented again if he were stronger and she said he could, but not with a lot of conviction. His current MELD score is 26, which is acceptable, so I don't know.

By the way, MELD stands for Model End-Stage Liver Disease which gives each person a score based on how urgently one needs a liver transplant within the next three months. The score is calculated by a formula using bilirubin, creatinine and INR (clotting factor) lab test results. The range can be from 6 to 40, the higher the number, the more critical the need for a transplant within 3 months. How much weight this carries when evaluating a patient, I don't know.

Needless to say, this decision is not the one what we wanted to hear.

I hate waiting

John had physical therapy today for the first time since he arrived at GH. I saw him in the evening and he was uncomfortable and wiped out. His mouth is always parched and since he has the NG tube, no water or food by mouth. The dryness makes him miserable. The only thing he can do is clean his mouth with wet swabs. He also saw the speech therapist today. She'd like to do another swallow study since he's a little stronger than when he underwent the test at UPMC. They did another x-ray and they still see the diffused ileum and his PCP would like a surgeon to look at him. A surgeon? Don't think he having surgery anytime soon unless it's for a new liver. I called his liver doctor's nurse and relayed the info. I'd like to know if they were already aware of this and what should we do about it.

I'm pretty sure the transplant team reviewed his case today, although I don't believe the transplant surgeons have seen him yet and that needs to happen soon. I have a name and number for the transplant coordinator and I'll be calling her tomorrow to see what's next. Sigh. This waiting for their decision is very nerve-wracking!

If you donate blood, I thank you!

John spent the majority of the day at the hospital getting blood and platelets. He looked a little better today. I thought he was getting an ultrasound at the hospital, but no, he's getting another x-ray at the nursing home. He has a diffused iliem, which is a slight blockage in the small intestine. No one seems to be very alarmed about this, so neither am I.

Hope all the moms had a nice Mother's Day

Not a real exciting day today, but it was nice. Van, Anita, Jeff, Lili and I had a mid-afternoon dinner. We visited John and then visited Laurie and Darryl for an outrageously sinful dessert.

John's been getting feedings via the NG tube. The stuff is called Jevity. Looks kind of like chocolate milk but not really. Probably a good thing he can't taste it. He's still pretty weak and tired. Tomorrow he goes to the local hospital for blood products and ultrasound.

Thanks, anonymous poster, for your comments. I think his MELD score is under 30, but his INR creeps up quickly without fairly frequent plasma, platelets, etc. He spent some time at AGH in January but wasn't evaluated there because we decided to go to UPMC. He definitely needs a transplant.

Boy I'm tired

Stopped by GH this afternoon and John was sound asleep. We didn't wake him because he finally looked like he was comfortable. I went back later with the dogs and the aides put him in a wheelchair so we could go to one of the lounges to watch the hockey game. He did pretty well, staying in the chair an hour and a half. Hard to believe, but I think he's getting used to the NG tube.

University of Pittsburgh Medical Center (UPMC) is presenting John's case next Tuesday. The transplant team will review all the test results, interviews, etc. and make a decision as to whether John can go on the transplant list. Please keep this in your prayers!

I'm beat...time for bed.

J back in New Castle

Well, turns out John went to GH today. I thought he had a stress test yesterday, but he just had an echocardiogram. Today he had the stress test and he was back on his floor early enough to send him to GH this afternoon. Saw him late this afternoon. Poor guy hates the NG tube. I feel so bad. I hope he can start eating and drinking by mouth soon. At least he no longer has the central line, and an IV pole following him around. Tomorrow he'll be assessed for physical therapy. He'll enjoy that immensely I'm sure. I think the Pens are playing tomorrow night, so the girls and I will go watch the game with John.

The Plan

Today John got his nasogastric (NG) tube today. I talked to him on the phone mid-afternoon and he did not like it. I called his nurse around 7 p.m. to see how he was doing with it and have the nurse remind him to watch the Penguins game. His nurse said he was doing well with it and receiving his first feeding. He also had an echocardiogram and chemical stress test today. I believe that completes all the tests needed for his transplant evaluation. I think they will present his case next week. Praying for approval!

Friday morning he'll be released to Golden Hill nursing home . He needs skilled care until he gets his strength back. He'll receive physical and occupational therapy while there. Going to bring him his clothes and shoes tomorrow. I know he'll be glad to get out of there, but is not too keen on going to the nursing home. I just hope he starts feeling better soon!

I'm trying to make plans to head back to Florida in a couple of weeks. Don't know if I'm going back for a few days or a few weeks. It'll depend on what the transplant team decides.

Moving forward

John was sitting in a chair when I got to the hospital today. He looked exhausted. They still hadn't drained him. Fortunately, one of the internal med doctors tapped him bedside in the afternoon and drained almost 5 litres of fluid. After that, he fell into a sound sleep. It looks like he'll be released in a day or two to a skilled care facility for rehab. Working with the social worker on that one. So that is good news. He can't wait to get out of there, but will be getting physical and occupational therapy to get his strength back. He'll undergo the rest of the tests for transplant evaluation soon. Praying he'll get on the list!

Sigh

John is tired of being in the hospital. He's also physically tired. Today he received blood products in anticipation of a new drain. Aunt Esther and I stuck around into the evening waiting for radiology to determine if his clotting factor was in a safe range. They decided they will give him more plasma around 4:00 a.m. then insert the drain sometime in the morning. I know he'll feel a bit better once the fluid starts draining again. A speech therapist worked with his swallowing technique while we were there. Still no food or water by mouth and no NG tube. He's receiving IV fluids.

Not much new to report

Van, Jeff, Lili and I went to see John for a couple of hours this evening. He's still really tired, but seems to be okay. Not sure what's ahead next week. Probably won't know until Monday. Tomorrow Chrissy and Anita and going to visit John. Sunday seems to be my day off. :)

Okay

I'm pretty tired, so I'll make this quick.

John was noticably perkier today. Mind you, still extremely tired, just more alert. They were still giving him plasma when Van and I got there at 11:00. They finally took him for the ERCP, which is the acronym for Endoscopic Retrograde Cholangiopancreatography (that's a mouthful) around 3:45. The goal was to remove stones that were in the main bile duct from the liver to the small intestine. What the doctor found was a fistula that broke through near the end of the duct. The opening to the small intestine was partially closed and much too small for the stones. The doc was being very cautious not to cut unnecessarily and possibly cause a lot of bleeding to remove the large stones, so he opted to put in a stent so the bile can drain from the liver. The stent can stay in for 2-3 months. Either John will get a new liver in this timeframe and the stent can be removed then or the expectation is that his health will improve enough to be able to go back in a few months to remove the stent and the stones. John was in the recovery room by 5:00, then we went upstairs and waited for him to come back up at 7:00. He was very tired, so we left not too long after that. I just called his nurse and she said his vitals are good and he's sleeping. More to come....thank you for your prayers!! xo

Lots going on....

...today they were concerned that John is sepsis. Not good news, however, urine cultures and the last abdominal cultures were negative. Tonight they're giving him lots of fresh frozen plasma to get his clotting factor down. If it is, they will go in via endoscope tomorrow and remove the stones. The danger is bleeding, of course, and they may have to do some cutting to remove them. They are also going to remove the drain, remove fluid for cultures and insert it in a new area. The drain's been in for 5 days and that's just an invitation for more infection. I think that's everything for now, but I'm sure I'm forgetting something.

Keep praying!

John looked like crap today. Hard to imagine he seems to be slightly more comfortable. He didn't sleep well, as usually is the case in a hospital. And he is kept mighty busy during the day. Today he had a visit from the social worker who spoke with me yesterday and some physical therapy (very little since he's pretty weak). He also had a visit from a speech pathologist to check his swallowing ability. Tomorrow he undergoes a swallow study. I don't know what's all involved with that. He's been limited to a soft diet and he's not real thrilled with that. His liver specialist told me today that he thinks another infection is brewing. His white count is up again slightly and there's a stone in a bile duct. They're going to do an MRI. This may require an endoscopic procedure, which is very risky for someone in his condition. We'll know more tomorrow.

On the bright side, I ran into an old friend at the hospital. She's a nurse-practioner at UPMC and she was passing the elevator as I was getting off. It was great to see her and we'll meet for lunch or coffee one day this week.

Good day, bad day

Yesterday Anita and Walt visited John. He was still in ICU waiting for a bed. Anita said he looked good, but was irritated. He was hungry but they are concerned about his swallowing, something that has been an issue since his head injury. So he's getting soft foods and liquids with thickener. Yum.

When I went down today, he was in a regular room and sleeping. When he woke up, he was VERY uncomfortable, complaining that his stomach hurt. He tossed and turned, tossed and turned...just couldn't find a good spot. Didn't eat much either, but a hematologist who checked in on him said he could have a milkshake. He liked that idea, so I got him a strawberry milkshake and he drank most of it.

He is still draining, but they only allowed 3 litres over 8 hours. Since his BUN and creatine were good, I think they were deciding to speed it up a little. The sooner the better, in my opinion.

I also spoke with the social worker from the transplant team. She's assessing his support system, living arrangements and other things related to post-transplant care. That's IF he gets approved and actually gets a new liver. It's a daunting task after surgery; he will require someone to be with him 24/7 for at least a few weeks. The follow-up care is pretty intense, but worth it. More to come!

Happy anniversary to Anita and Walt, who married on our parents' anniversary.

Did I say piggy-back?

I meant pigtail. My brain is fried. This is what a pigtail drain looks like:

It was a nerve-wracking day. One of the docs was becoming very concerned about John's condition. They had given him plasma and platelets during the night, but his blood still wasn't thick enough for the radiologist to insert the drain. And the volume of fluid in his body was increasing, causing a strain on his kidneys and respiratory system. The doc called in the doctor from the Transplant ICU who evaluated him and determined they would be able to do the drain in the ICU.

Aunt Esther and I were able to see John after they drained the first litre. I say the first, because when I called around 9:00 pm, he was on #4. If you think that's a lot of fluid, that's because it is! We stayed till the hockey game was over (Go Pens!). His vital signs are okay. Heart a little high, but his blood oxygen levels are respiration rate are good. He will remain in ICU for a couple of days, then move to regular room where they hope to be able to finish evaluating him for a transplant.

Tomorrow Anita and Walt will visit John. I am exhausted. I need to spend some time with the dogs, do laundry and just rest. I'll go back on Monday. Thanks SO much for your prayers!

Another day....

Yesterday John's clotting factor was not in the safe range to tap. So during the night they gave him more blood products. Unfortunately, that also creates more fluid, so they consulted with a doctor from the transplant ICU to see if they would be able to tap him there. So that's where he's at right now. They will insert a piggy-back drain and monitor him in the ICU till they feel he can go back to a regular room. Dicey situation, since there are risks associated with inserting a drain with someone in his condition, but more risky to keep him full of fluid....it could cause problems with his kidneys and respiratory system. If there are no complications, the draining can begin which I'm sure will be more comfortable for him. Once he's completely drained (could take a couple of days), they will scan him to find the source of the infection. One baby step at a time....

Finally

John went to UPMC mid-afternoon and we arrived about an hour later. He's resting comfortably and 2 doctors have already been in to see him. He's doing so much better than yesterday. He looked terrible and the doctors scared the crap out of us. Once they backed off all the blood products, he wasn't so full and congested. Tomorrow they'll insert a catheter and drain the excess fluid over a couple of days. They have no qualms about doing these things...they deal with it every day. John was watching the hockey game when we left. Going back down for several hours tomorrow.

Hurry up and wait

John is going to be transferred to Univ. of Pgh tomorrow morning. Sigh. After the docs said he needs to get there ASAP. We waited all afternoon and evening for the go ahead. But, he is stable and if his condition worsens they will LifeFlight him there. It's the typical gyrations when you're dealing with a specialty such as liver disease. News to me. We're praying he remains stable overnight and can go in the morning by ambulance.

The reason Valley GI doesn't want to tap him (remove fluid from his abdomen) is because he needs A LOT of fluid removed and they don't feel comfortable doing it; it's a high risk procedure for someone in his condition. Jameson Hosp. is capable of doing therapuetic tapping, but not the volume that's required to be removed for John. At UPMC, they do this procedure often in liver disease patients and can monitor him closely afterward. In addition, they will continue evaluating him for a transplant while he's there. Time is of the essence.

They continue to give him albumin to assist in removing fluid. He had soup and sherbet for dinner, so he does have an appetite, which is good. He seemed more comfortable when we left this evening and we prayed with him before we left.

Your prayers are GREATLY appreciated by John and us. I'll update you all as often as I can.

I'm learning more about blood than I ever wanted to know!

John is getting a little better. They have pumped him up with blood products and they're going to tap him again. He's very restricted on fluids...1200 cc, which is about 48 oz. That includes all the blood products, so they give him albumin to help draw water out of his tissues. He's eating better and getting a little stronger. Maybe he'll go home in a few days. Still waiting to hear from UPMC. If they don't call today, I'm going to call them tomorrow.

I was able to get a script for my quarterly blood work faxed to John's hematologist. Going to do that today before going to the hospital. I'll see my oncologist as soon as I get back to Florida.

Stella has been quiet the last two nights so I'm hoping that was just a fluke!

What a difference a day makes

Thank God, John is coherent today. He is also feeling better. Not surprising, given the amount of antibiotics, blood, plasma, platelets and albumin he's been getting. Also sodium chloride, Lasix and his current medications. All day today and up to midnight, they are taking his blood pressure every half hour. They need to ensure with all the blood products he's receiving that he's not retaining too much fluid. A delicate dance, you could say. He was able to feed himself today and ate fairly well, so hopefully he'll start getting some strength back.

I almost always bring the dogs with me when I visit John at his place. Since I've been spending a lot of time at the hospital, the dogs are feeling a little separation anxiety. Last night, after we all went to bed, Stella sat at the bottom of the stairs and cried. Off and on, till about 2:40 in the morning. No one got a good night's sleep. She was acting like a new puppy, for goodness sake. I spent more time with them today, and I'm about to go to bed, so I hope she doesn't put in a repeat performance tonight!

Thanks for your prayers. More to come tomorrow.

The latest

John had a rough day yesterday. Pretty out of it. Confused, belligerent, uncomfortable. Sigh. They are almost certain he has an infection again. G.I. doc tapped his stomach bedside. She wanted more cultures and it relieved some of his discomfort. He's on antibiotics. We may have him transferred to UPMC if he doesn't improve. His vitals are stable, but he doesn't have much of an appetite. I hope with the antibiotics that he will feel a little better and with it tomorrow. Keep praying!

John was slightly better today. Still out of it but not as bad as yesterday. His white count is lower so the antibiotics are working. They have him on IV Zosyn which I'm not familar with but it's in the penicillin family. They also are giving him albumin since his diseased liver isn't producing enough of it. He ate a little more than yesterday (he's not feeding himself) but is having trouble swallowing. A speech therapist will see him. Could be he's weak and he had trouble swallowing following his head injury in '89. More to come tomorrow.

John update

Hope you all had a wonderful Easter. I did.

John had his stomach tapped again on Monday and he's been doing fairly well. This morning, though, he woke up and had trouble getting out of bed and the site where he was tapped was leaking. His doctor had him admitted after some tests. A concern is infection. They drew some blood cultures and those take a couple of days to grow. He slept most of the day which is good. He looked much better this evening when Van and I left. We did receive some good news this week: UPMC is moving forward with evaluating John for a transplant. They are scheduling some additional tests (stress test, EKG, etc.) which I hope can be done in the next 2 weeks. I need to head back to Florida at some point.

Loooong week

It's been a long week, I tell you! John was to get his stomach tapped Friday, but the radiologist cancelled the procedure because his protiem level was too high. I don't know what this is yet, but I will find out. I think it has to do with the clotting factor. Anyway, that was a wasted trip. It was an ugly rainy day, and I (and I know John) would rather not have had to run around in a wheelchair (him riding and me pushing).

I'm tired, but what else is new. I hope you all have a very blessed Easter!

Shame on me

I have been spending way too much time on Facebook and zero time here. I will probably do short blurbs more often.

John is doing okay. Still waiting to hear if UPMC is willing to evaluate him for a transplant. I think they are still waiting for some medical records.

The dogs are behaving, Levi is in heaven at Aunt Esther's and I'm very tired, but okay. I spend as much time with John as I can. I've been playing 500 Bid with him and two other folks at Greer House about 2 times a week. It's fun to play cards with real people instead of virtual ones!

Not sure when I'm returning to Florida. It depends upon what we hear from UPMC.

That's it for now...I'll do my best to catch up here a little at a time. xo

In Pennsylvania

Sorry I haven't posted in awhile. Becky got into Florida on the 6th and we ran around for a few days before leaving town on the 11th. Of course we managed a little beach time...once at New Smyrna Beach and once at Daytona Beach. The weather was great.

The dogs and cat did pretty well on the road trip. We did 10 1/2 hours the first day, stopping overnight in Beckley, West Virginia. That included stopping for the dogs. Bella and Stella barked a lot at the motel. The next day we only had 5 1/2 hours to drive. Anytime the car was moving, the dogs slept. Levi is not real fond of car rides but he did well, too.

I spent the next day recovering from the trip. The old hip really hurt, but resting and icing helped a lot.

I imagine I'll be pretty busy while I'm here, but I'll try to post when I can. XO

A little less stressed

I found a slightly lower rental rate with Dollar Rental. They advised me to ask about waiving the drop fee when I pick up the car. Even if they reduce it in half, that would be a huge help.

I'm almost done getting everything ready for the trip. I need to CLEAN, which I keep avoiding. I just dread doing anything physically straining because I know I'm going to pay for it later. I've got to find a way to reduce the hip pain. It's very frustrating.

The weather here has been wonderful. I've had requests to bring the sunshine and warmth with me to PA. I'll see what I can do!

Stress

I'm getting stressed out. I can't find a minivan for less than $700. Car rental companies pack on an enormous drop fee for one way rentals. So I don't what I'm going to do.

I feel lousy. My hip is killing me and it doesn't look like I'll be able to see a doctor before I leave. I faxed over info last week and it has yet to be reviewed by a doctor. Today I was told it could take a week to 10 days. So that means an 18 hour car ride with a painful hip which I imagine will be far worse by the time I get to PA. The only thing I can do at this point is bring all my records and films with me and try to see someone in PA. I wake up with a headache every morning and any physical exertion makes my hip throb. I've still got lots to do before this weekend when Becky arrives and our plan is to leave March 11th. Needless to say, I AM NOT HAPPY.

Holy Susan, Full of Grace

Make that anything but. While working at the hospital's PR dept.yesterday, I tripped over the carpet and went flying. I now have brush burns on my right elbow and knee. They look like just the kind you get when you're a kid.

I'm hoping to get into the orthopedist's office next week. I could really use a cortisone shot in my hip. The pain has been pretty bad lately and I think it's best that I get an injection before a long, long car ride.

I'm tired. And restless. I'm really looking forward to getting to PA.

Excuse me while I rant

I may offend some but I've got to write this before my head explodes...

Since when is making $250,000 considered wealthy?? I'll venture to guess that many families making that or more is because they are two income families. Is anyone stopping to think that higher taxes will cause families to reassess why both are working? I can easily imagine one income-earner quitting because they are in too high of a tax bracket. If this happens, what happens to the tax revenues that the gov't is counting on and salivating to get their hands on? As it stands, the top 1% of income earners pays 40% of the total taxes. The top 2% pays 62% of the total taxes. Can someone please tell me where is the incentive to be successful? Is the goal to make everyone so strapped that we completely become a welfare state? Is THIS why we fought the American Revolution?? Quit drinking the kool-aid people and wake up!!

This editorial from today's Wall Street Journal offers some facts. Imagine that! The 2% Illusion

In other news, John is about the same, I'm shooting to head to PA March 12th or 13th. John is going to the Univ. of Pittsburgh Medical Center (UPMC) to be evaluated instead of Allegheny General. They have much more experience in organ transplants. His new appt. is March 18th.

It's Friday so...

...the weekend is here. Sorry, I couldn't come up with a better title today!

Spoke with John a couple of days ago and he seems to be okay. Okay, for him, I mean. His attitude is good, is eating well, but he's weak. He received more platelets this week. I'll call him again this weekend.

I may have a little flare-up of the lymphedema. My upper right arm has been sore and I thought maybe it was the way I slept or maybe sore from yard work. I examined my arm a little more closely and I think it's slightly more swollen than usual. I'm having my oncologist's office fax a script to my physical therapist so I can get in next week for some therapy. I haven't been very conscientious about lifting heavy things with my right arm so that may be why there's a flare-up. It's hard NOT to use my right arm for most things. Sigh.

Keeping busy

John is much more alert. After reducing the Lunesta dosage, he is doing better. He took a little spill while in the bathroom at my sister Anita's house on Sunday, but thank God he was not hurt, just a little sore. Such a rollercoaster ride. I'm very anxious to get up there and I'm very grateful that I'll be able to do so.

Not much else is new. I'm looking for freelance work, volunteering at the hospital's PR dept and at their Cancer Institute. It's time to prune everything outside and I'll take advantage of some cooler weather to do it. I especially need to get it done before I head up to PA. By the time I get back in early April it will be too late. So lots to do in the next couple of weeks!

Revisionist history strikes again

Please give me facts aka "the truth." Politicians (all of them) need a refresher course.
Obama's Rhetoric Is the Real 'Catastrophe'

Plans coming together?

I think my plans to go to PA for a month are coming together FINALLY. I'm going to stay with Van, Jeff and Lili. The pups will be restricted to the lower level. That's where the TV, Wii and other stuff is. It should work out. I think Levi will stay with my Aunt Esther. I think I have someone to drive with me. Now I have to decide whether to drive my car or rent something bigger. I figure I'll be traveling sometime during the first week of March.

John's about the same. Extremely tired all the time. The doctor reduced his dosage of Lunesta. Not sure if that's what's causing the extreme fatigue, but we'll find out. I'm sure the liver disease has something to do with it, too.

Took the dogs to a free training class at Petco yesterday. I met a family with two Italian Greyhounds. They are much thinner than my two! We met at the dog park in Deltona afterward. I haven't been there since the bad experience with the bulldogs. Stella and Bella stuck around my ankles. I was hoping they would run around with the other Iggies. I'm hoping that with familiarity they will feel comfortable to play with other dogs.

The Terrible Cookie?

Thanks to Joyce's niece, Christi, for sending us Eat 'n Park's Steelers cookies! And a Super Bowl XVIII Terrible Towel! Thanks!!!

And while I'm at at, here's a pic of my 2 cold Iggies trying to stay warm:


Yesterday I put together an end table for my family room and afterward I couldn't stand up straight. Fortunately it was partly assembled or I probably would've needed help. I'm not all that talented mechanically speaking. BUT I had bad back spasms. Used heat, liniment, ibuprofen and today ice. It's just starting to feel better.

Anita was able to get an earlier appointment for John. His new appt. is March 10th. I plan on being there by then. Still not sure how I'm doing it, but I will be there.

John

I spent the weekend doing stuff around the house. Worked outside whacking weeds and trimming hedges. Gave the dogs a bath, did laundry, etc. Nothing exciting.

John is not doing well. They keep having to give him platelets. He is always very, very tired. He doesn't have an appointment with the Liver Center until March 25th. Too far away. Please pray he can get in sooner.

Update

Van's home from the hospital after the EKG, blood work and stress test were normal. The doc told her to take niacin and a baby aspirin every day. I hope she follows up with a cardiologist.

John received platelets today. The on-call doc was alarmed when he saw John's blood work. Apparently he didn't realize that dangerously low platelets are par for the course with John. It could've been done on an outpatient basis. He HATES being there. He sounded exhausted. I'm concerned about both my sisters. They are really under a lot of stress right now. I may have found a place to stay with the dogs. It's not my first choice, but I really want to be up there.

More Fun and Games

Well, John is back in the hospital to get platelets and I don't know what else. My sister Van was having pain in her left arm and feelings of nauseousness the other night. She was admitted yesterday and so far every test is coming back fine. She was to have a stress test today. John is right down the hall from her.

Sigh. When the going gets tough, I go back to bed! Which is what I'm about to do right now....

Happy Birthday!

Today the pups turned six. It just seems like yesterday they were born!

I picked up girlfriend from the vet's about 3 pm today. I felt bad when I dropped her off this morning. She was so nervous she was shaking and dropped a turd in the waiting room. I wonder if dogs get embarrassed. She had to have 2 teeth pulled (rats), but did really well. The vet assistant told me she probably wouldn't feel like eating. She doesn't know Stella! She wanted food as soon as we got home. Anyway, I'm glad that's over with.

In addition to volunteering one afternoon a week at the Cancer Institute, I'm also going to volunteer one afternoon a week in the hospital's PR/Marketing department. It's good experience and I'm hoping to pick up some more freelance work. I'm starting tomorrow. It should be fun!

Hmmmm....

I've really been neglecting my blog. I'm blaming it on Facebook. Or chemo brain. Or both.

Another cold night is in store. It looks like almost the entire country is suffering a cold spell. Those people in Kentucky...my goodness...how are they surviving without electricity??

John is about the same. He is extremely tired. And not sleeping well. I've run into a snag with my plans. Please pray for John and pray for the ability for me to travel to PA in March. I appreciate it.

Tomorrow Stella gets her teeth cleaned. I'll be a nervous mommy. Stella and Bella are also celebrating their 6th birthday tomorrow. We'll have cake and ice cream (not really, but it sounds like the appropriate thing to say).

Super Week!

Super Bowl week is here...woo hoo!


Chatted with John last night. He sounds pretty good and it seems that, at least for now, the fluids aren't building up too quickly. He has some doctor appointments coming up. It's good to hear him in a good mood!

I feel like I'm getting another cold. Have a bit of a sore throat. And I'm tired. Oh well.

My brother's family's kitten, Rambo, has been sick. He's 9 months old and developed a urinary tract problem. His urethra had to be unblocked a few times. He's on special food and is at the vet's for a few days trying to get his bladder to settle down. Hopefully, he'll be okay, although he'll be on special food for the rest of his life. Poor little kitty. :(

New 'do!

I had a fairly busy week. Monday the pups went to the vet for their shots and Tuesday I took Levi. Once I took all three at the same time and it was quite the adventure. That's why I've only done that ONCE. On the 5th, Stella gets her teeth cleaned, which is also her and Bella's 6th birthday. What a birthday gift.

Wednesday I did my weekly stint volunteering at the Cancer Institute. Thursday I had my car tuned-up, an oil change and rotated the tires. Yesterday I got a new haircut, color and lowlights (opposite of highlights - they are a deep red.) I really like it. I took in a picture of Penelope Cruz with what I wanted only chin length. I was hoping I would leave the salon looking just like Ms. Cruz, but Christine is a beautician, not a magician, unfortunately. Boo. Anyway, beautician is a very throwback term. I think she'd rather be called a stylist.

Today I'm doing laundry, making meatballs and sauce and doing crossword puzzles. I managed to take the dogs for a walk, third day in a row. Tomorrow at my bro's we'll have the gnocchi I brought back from PA with the stuff I'm making today. I also have the delectable parmigiana I purchased for the 2nd time from Whole Foods Market.

I haven't talked to John in a couple of days, so I will probably call him this evening. I know he's happy to be home. I'm still working on finding a place for me and the dogs, so that is the current obstacle. Hopefully, I can work something out in the next few weeks.

One week and 1 day till Super Bowl Sunday! I still can't believe the Steelers are in it again. :o)

Chemo brain strikes again

Once again, I am using my favorite excuse for acts of stupidity. As you can see, my Mexican Petunias are falling over from the weight of ice. We had incredibly low temps last night and my sprinklers were scheduled to run last night. Of course, I forgot to turn them off. Fortunately these plants are extremely hard to kill and in fact, are listed as an invasive species in Florida, so I won't lose any sleep...they'll be back in droves in no time.


It is unusual to see a Crape Myrtle covered in ice. Looks pretty. They are all well established, so they will be fine.

The same cannot be said for the one remaining hibiscus in my back yard. It may survive, but it's dicey. It is currently under cover for the night. My potted plants are currently sleeping on my sunporch, so they are tucked safely away from the cold.

John is back at Greer House tonight and happy to be there. He was discouraged and frustrated this past week, but his spirits sound better already. The staff at AGH didn't want to tap him again for fear of infection and/or bleeding. John said in 2 weeks they'll start evaluating him for a transplant. Keep him in your prayers!

Dick Morris, a political pundit and former advisor to Pres. Clinton, writes about the things we can expect in the next 4 years. It most definitely makes me very uneasy. You can read it at The Obama Presidency - Here Comes Socialism.

Another interception story...

My cousin Cathy wasn't able to post this so I'm doing it for her...

well i have a little story to tell myself. i ve worn the same thing for every game through the playoffs. sunday, i had steeler earrings in, which i hadn t worn before. i was sitting on the couch, watching the game, thinking about those earrings so i took them out. i told my friend mary, and tina, that i felt an interception coming on and then it happened! our boy troy, soft spoken maniac that he is, pulled through yet again. talk about jumping up and down and screaming. it was awesome!

It's me now....the low temp tonight is forecast to be 29 degrees! If there is any precipitation, we'll have snow in central Florida. Yikes.

John Update

John is still in Pittsburgh. Doing okay. They've been boosting him up with platelets, etc. They tapped his stomach yesterday. The hopeful news is that the doctors at Allegheny General feel he is a good candidate for a transplant! A little disconcerting that they don't understand why the VA System rejected him a few years ago, especially since he was in better overall health back then. DON'T GET ME STARTED on the quality of care (or non-care) that veterans receive from the VA System. I have seen first hand on several occasions just how lacking it often is. We should be providing veterans with the best care available. No exception.

Well, as you can imagine, I am thrilled the Steelers are returning to the Super Bowl. Joyce came over to watch Sunday's game. She is a die hard Troy Polamalu fan. In the 4th quarter she was taunting Ravens QB Flacco to throw the ball to Troy (for an interception) and lo and behold, he did!! And Troy ran it back for a touchdown. We were screaming so loud I wonder if the neighbors heard us! LOL...it was a great moment.

Road kill

I've been told that no raven was injured/maimed/killed for this picture. Hmmm....

It's Saturday!

John was moved to Allegheny General in Pittsburgh late Thursday night. He's supposed to have a drain inserted into his abdomen today. I called him last night but he had been sleeping and sounded pretty out of it. I'll try again today.

I'm looking forward to the Steelers-Ravens game tomorrow evening. I guess that goes without saying. ;)

Moving ahead...

Well, John had a good night's sleep and his BP came up a bit. They didn't need to move him into ICU, thank God. He's going to be transferred to Allegheny General Hospital in Pittsburgh to their new liver center tomorrow I believe. They'd like him to get him more stable then they will discuss the possibility of going on the transplant list. He's eager to go. This is becoming a bit of a rollercoaster ride (I hate rollercoasters), but God is answering prayers.

I've gotten through all my doctor appointments, except the dentist. I'm going to try to get in sooner than I was scheduled. The angelic beasts are getting their shots next week. Just need a few other things to fall into place so I can make a trip to PA.

For all of you in the frozen tundra...stay warm, stay safe and stay home!

John Update

John is still in the hospital...another rough day for him. He had problems with his IV today and it caused A LOT of discomfort. His BP is pretty low and they may move him to ICU to monitor it more closely. I talked to him for a bit tonight. His appetite is good and he wants to get assessed for a transplant again. I hope his health holds out till then. Your prayers are greatly appreciated!

Proper Attire

The latest in haute couture:

Where was this wig when I was going through chemo??

I can now attest to the efficacy of Benedryl. I have been taking it before going to bed since it is one of the active ingredients in Advil PM, without the stomach irritating properties of ibuprofen. Last night I forgot to take it and did not sleep well and woke up with a raging headache, which I still have.

Note to self: DO NOT FORGET TO TAKE IT!

Amy Taylor

There is something important that I haven't mentioned earlier since there have been so many things going on. Amy Taylor, whose Caring Bridge site I have been reading since last summer, passed away on Dec. 27th. She courageously fought her disease till the very end. Amy leaves behind a husband and two small children. Keep them in your prayers as they grieve their loss and work on the journey to a new "normal."

John is back in the hospital getting his abdomen tapped and I believe getting something inserted for future tapping that can be done where he lives. He was admitted yesterday afternoon and more than likely will be released tomorrow. When his stomach fills up with fluid, he becomes very uncomfortable, as you can imagine. His platelets are up, which is good. They are still dangerously low, but are now higher than they've been in quite some time. John was prescribed Lunesta and has been sleeping much better, thank God. Thank you for your prayers!

I had my mammogram last week. Everything looks good, although the radiologist was very thorough and requested additional images and an ultrasound. This made me a little nervous, but thank you, God, again for the all clear report! Next mammogram is in 6 months.

I'm still planning a trip home and currently working out the details. The weather has been horrible in Pennsylvania and beautiful here. I must be nuts!

John Update

VA Home Health Care and Southern Care (hospice) are stepping in to help John. He's going to start seeing the primary care doctor who admitted him to the hospital before Christmas. He really wants to see John be comfortable and enjoy a reasonable quality of life, for how long, only God knows. John is already in assisted living, but the extra help will be a blessing for him.

I am still working on plans to go to PA for an extended time. Some things are falling into place. Some things still need to be worked out. I would really like to be there to help out and give my sisters some relief.

I saw my surgeon yesterday and my medical oncologist today. Other than my blood work showing slight anemia, everything else is fine. My surgeon wants me to have a mammogram in addition to the breast MRI I had last month so that is scheduled for this Thursday. I'm trying to get all these doctors' appts. and tests done this month. Once I do I won't need to see them again until April. That would be good.

Sigh

John is going to need his stomach tapped again. Not sure when. He's very tired all the time, which is not unusual for his condition. I may go up there for awhile. Trying to work out the details, of which there are many. Keep John in your prayers! xoxoxo

Back in Florida

I am so very glad I made the trip home to PA. I got to spend a lot of quality time with John. He's doing better, but not great. I continue to be very worried and I would really appreciate your prayers.

I squeezed in some very short visits with friends, but most of my time was spent with family. I'm grateful for the trip.

The dogs and the cat were very happy that I was back. Levi was a little ticked off at me, but that's a cat for you! I came back with food...mostly things you can't get here. Like basket cheese, really good ravioli, pastina, cookies and lots of Jameson's Chocolates. I shared all with Joe, Linda and the girls. It is time for New Year's resolutions and I think they will look very much like last year's!

My breast MRI from the 19th was all clear, thank God. This month I have a round of doctors' appointments. Never a dearth of those.

Wishing you all a blessed, healthy, happy and prosperous 2009. xoxoxo