Deja vu all over again...

So it's been more than 5 years since I last wrote here...and truthfully, I thought I'd never touch this again...that the disease was dead and I wasn't.

About 18 months ago, when it was time to switch over from semi-annual to annual labs, the first shoe fell. Doctor told me that there was a little something in my blood...probably nothing to worry about...but that we should continue the semi-annual visits. A few visits went by and no mention of this "phantom". Forward to mid-April when I'm told that I've relapsed. He wants me to come back in 2 months to check out the growth rate.

Mid-June rolls around and there are more amyloids in my blood. The good news is they're increasing slowly. We'll wait another 2 months and more lab work for now...but the fact-finding has begun for me.

I figured that, since I'd beaten it once, I can do it again. We talked about the options and, yes, another transplant is a possibility...they've still got more than enough of my stem cells frozen at Emory to do another. On the other hand, a second transplant typically lasts about half as long as the first.

I don't want to go through that again if it's only for another 2-3 years; there are options. The options aren't much better as they too involve chemo drugs. The up side is they'd be spread out over a period of time.

Emory is starting a clinical trial for relapsed amyloidosis soon. The doc mentioned it in April; in June, he told me I don't qualify. It seems I'm too healthy...another piece of good news (maybe).

So, for now I'm planning on getting my very arthritic shoulder repaired. Once the other fun begins, surgery would be a major infection risk that they probably would frown on.

Thanks for caring,
Jerry

Another Long Overdue Update

It's now January 17th...almost two weeks since my last update. I've had nothing but good news for myself.

Alice went back to work full-time on January 7th. I've been out on my own several times since then; I was able to attend the retirement party of my boss's boss...who I've known for 20+ years. I took Alice out to lunch one day. I even did our grocery shopping last weekend.

I began working "a few hours a day" from home on Monday, January 14th. I've been doing about 3 hours each day. I feel as if I'm actually a part of a team there again. A few things have lain dormant since I left...since they've already been shown to not be very time-sensitive, I'll be working on those for awhile.

Friends came over (one from as far as Warner Robbins) one weekend to do "whatever we needed done". There wasn't much, but one major thing was getting my bike and training stand upstairs. Since then, I've been doing a steady hour on it most days, keeping a careful eye on my heart rate like I promised the doctor. I've already seen quite an improvement and am hoping to be able to do the Bicycle Ride Across Georgia again this year, a week-long trip that this year will go about 400 miles from around Covington to St. Simons Island. I haven't missed one since my first in 2000.

The one thing that reminds me I'm not 100% is sleep; I'm sleeping 9-10 hrs or more every night. In the past, I was good on 7-7.5 hours. It may be a real need or maybe just a habit I've gotten into. I'll probably start setting an alarm next week and maybe start going back to the gym in the morning...seeing how that feels. I'll also allow time for a nap if that seems necessary.

Alice began a non-surgical treatment of her back a few weeks ago. We're keeping our fingers crossed that it works since the only real alternative is probably surgical...not fun for anyone and a long recuperation period.

Thanks for everything.
Jerry

"Complete Hematological Remission"

Along with some other great news, that's what we were told at the clinic yesterday (1/4/08). What that means requires a little background. The badly formed proteins, amyloids, had been seen in my bloodstream before the transplant, etc.

In the latest blood tests yesterday, there are no amyloids in my blood! In other words, my newly generated bone marrow is generating perfectly normal proteins...and none of the bad ones! This total remission is seen in about 50% of those undergoing the treatment. They've yet to see anyone relapse from this full remission.

On a similar note, more background. A few weeks before I went into the hospital, my kidneys were dumping about 7 grams of protein out daily where there should be none...or no more than a few milligrams. On my second day in the hospital, that number had gone up to 22 grams (about 1/2 the daily average intake of protein). This was an indication of a kidney problem and the reason I had to originally see the nephrologist who thought he was G-d.

In Monday's urinalysis, the protein output has now dropped back down to 6 grams. This is a very clear sign of the kidneys returning to normal. They're repairing themselves, flushing the amyloids that were causing all the initial problems.

On top of that, I now own a slightly used, almost bloodless, Trilumen Hickman Catheter that lived in my chest, carotid artery and heart for about 6 weeks. I'm looking for ideas on how to display it. Alice suggested I proudly display it inside an upstairs closet or attic. :-).

In a few days, I'll be back to my normal meds...with the addition of an anti-pneumonia drug taken 3 times a week. The nephrologist's diuretic is gone, along with its required horse-sized potassium pills. The Albuterol inhaler was causing tremors and is now gone. With my immune system almost normal, the other drugs go away in the next couple of days.

Yesterday, I was officially discharged from the transplant unit. I'll need to return to the clinic for followups but not nearly as often; my next visit takes place in about a month.

On our way out, we decided to stop by at the BMT ward, 7E. We walked in the door and were greeted by several nurses. More recognized Alice since I'd lost my hair since I last saw them...also, she's the one who brought all the bribes...chocolate, candy, roasted nuts, etc. One said she's the one who saw me pass out after riding the stationary bike. We had a few good laughs and then left. Unfortunately, we were too early to see the second shift. Still, it felt good to see those wonderful people who took such good care of me .

We ate dinner out last night to celebrate.

I still tire easily and seem to require more sleep than before but I know my body's been through a lot and still has a long way to go before it's back to 100% but there's light at the end of the tunnel (and it's not a train headlight).

Thank you all for everything. We couldn't have done it without you!

Jerry and Alice

Well, hallelujah!

Well, hallelujah!

Got all sorts of good news at the clinic today.

First off, I haven't forgotten how to use a wheelchair (I know, that's a little sick but it's the most exercise I've had in quite awhile). We got to the clinic and I used one of their chairs rather than trying to hobble around on crutches (my foot's pretty swollen and painful).

They had a little trouble drawing blood from the 6 week old catheter but the phlebotomist (blood tech) was patient and knew what she was doing, eventually coaxing 8 tubes of blood out of it.

After the time in the lab, we went to see the doc. When asked how I was doing, I said I'd be doing jumping jacks except for this stupid foot thing. (I am feeling so much stronger than yesterday) She had me take the shoe off and even I was surprised at how swollen it was. We talked about it a little and, once she was assured that it's a chronic problem with nothing to do with the transplant, asked what I usually do for it.

Usually, it's Aleve, ice and elevation. She chimed in with, "and we won't let you take anti-inflammatories". Then the first of the really good news, "your platelet count is high enough for you to take Aleve". It's amazing what becomes worth rejoicing over at different times of our lives.

Then she got to the results from Friday. The blood cultures and nasal swab had come back negative. No RSV, no fungus, no nothing. She listened to my lungs and the crackles (indicating possible fluid in them) that were noticed Friday are gone. Lungs, heart, etc all sounded good.

Before leaving, we made another appointment for Friday. For this one, they'll draw some more blood for tests. I'll see Dr. Kauffman, to talk about the whole experience and future plans. Then I'll go to Interventional Radiology...WHERE THEY'LL REMOVE MY CATHETER!

Got home and took the Aleve and iced things down. I still can't put weight on it but am willing to bet that there'll be real improvement by this time tomorrow.

A few days ago, Alice began an effort to fatten me up. She's got me eating three meals a day now...I think. I feel stronger. I'm looking forward to being able to move around and get over the last of this. Alice should be returning to her job next week, and I'd darn well better be lots more independent than I have been. It will be quite a change for both of us.

As always, thank you for caring enough to keep up with this adventure.

Jerry

Since getting home

Well, I've been home for just about a week now...and realized I haven't entered anything since getting here.

Note that this is mostly a recap of bad stuff...as I try to understand what's been going on.

I started thinking why that was. There's lots of conflicting thoughts running around in my brain. When I first got to the hospital, I still felt pretty good and was blogging often. Even the worst days pre-RSV weren't bad. I was still on the Bone Marrow Transplant (BMT) ward, 7E, and everyone was incredible.

Once I got the RSV, I was moved elsewhere, spending 6 hours every day under a tent and unable to leave the room unless I was going for some x-ray or ct scan...and would then need to wear this horrible NIOSH N95 face mask. During that time, I was also cut off from a reliable wi-fi connection.

Now here I am, with all the comforts of home (literally) and I should be shouting from the rooftops how great it feels to be here. It really does.

So what's different? Health-wise, I don't feel better than I did. More importantly, I feel like a burden (Alice doesn't feel this...and will be mad that I put it in here). I've never been good at being dependent. I'm normally able to do whatever I need by myself. However, since being home, I am so dependent on Alice. More than that, she's already got her own pain but needs to do all my usual chores plus her own.

We've enjoyed cooking together almost as long as we've been together; now I get to sit in my recliner and watch. On top of that, Alice has always enjoyed watching me eat. I usually have a big appetite and am told I obviously enjoy whatever I'm eating. These days, one of my portions can easily feed both of us...and I'm only eating two real meals each day, unless you count my daily portion of ice cream and cake. :-)

Since being home, I've had more upper/lower GI "distress" than during the month in the hospital. I'm frequently short of breath and am using an inhaler to help my breathing. 4-5 laps around the inside of the house has me out of breath.

The Friday trip to the clinic sounded positive except that I discovered that I'd had a staph infection along with the RSV. Also, they were concerned about pneumonia, a not uncommon result of the RSV. I seem to have the signs of an oral fungus as well as the possibility of another bacterial infection. I received a few pills for the fungus and some IV anti-bacterial. Also, I was given a prescription for some anti-pneumonia medication.

Spending a few hours in regular shoes Friday has brought about an old foot problem. Having nothing to do with the Amyloidosis, it feels like some sort of sneak attack. The laps around the house, necessary if I ever want to rebuild my strength, have stopped. Seriously painful, I can't take the usual anti-inflammatories to control it. Ice and elevation are about it...and they're not helping fast enough. My trip to the clinic tomorrow may very well be on crutches.

As you can see, the list goes on and on.

However, I'm alive and will in time return to normal. I know this. Having written all this down has helped to bring this all back into focus. I realize it'd be perfectly normal to be suffering some depression. So it's all normal and to be expected. Too bad I set such high expectations when all this began.

So, enough rambling...it has done me lots of good and, if you've read this far, thank you for taking the time.

Also, thank you to everyone who's called, sent cards, offered to help with chores, and all the other wonderful things you've done.

Jerry

Trip to the clinic

Today, Jerry was outside of the house for the first time since he came home from the hospital late on the 23rd. It was time to go to the clinic for his first checkup.

For hospital time, it really passed quite quickly. We started at the lab where they drew some blood for a variety of tests. Then we went to see the doctor. We met yet another doc, Ken Prince, who was quite pleasant and very thorough. Because of Jerry's noisy chest, he prescribed a couple of medications, one oral, one intravenous, so off we went to the infusion center. (In fairness, I should mention that all of these offices are close to each other and on the same floor of the Winship Cancer Institute.)

While Jerry was getting his iv meds, I went off in search of lunch. There is a small cafe on the first floor where I got a sandwich for me and some chicken noodle soup for Jerry. Almost like a picnic, except for all the nurses and the iv, etc. ;-)

We had a couple of quick stops on the way home (drop off movies, have prescription filled, pick up snack type foods) and managed to get home in the middle of a rather nice rain storm, perfect weather for a nice nap, which we both promptly took advantage of.

Unfortunately, Jerry is having an adverse reaction to our outing (maybe the soup) and has been suffering some nausea. Thankfully, he's not suffered from that very often, but it is one of the side effects of the chemo. His appetite is still way down, but he has been eating regularly, until now. I'm sure this too will pass.

Tomorrow, I have to go into the office to cover our Saturday hours, thankfully a short day. I will be asking a couple of our neighbors who have offered their help to be "on call" should Jerry need anything. He's a pretty low maintenance patient and is capable of taking care of himself, just needs a bit of a hand now and then. Still, it will be very strange for me to focus on business after focusing so completely on him for the past week! Hope I remember how to do my job!

I'm hoping Jerry will blog later and fill in all the gaps. For now, I am going to search for something he might consider eating.
Cheers!

First full day home

Jerry's first full day home started out quite well. He said he'd slept well and that he was hungry - a great sign!

As the morning progressed, his coughing kept getting worse. He'd barely catch his breath from one bout before another began. He wasn't running a fever, but his temperature was up. We finally decided it was time to call the doc.

Dr. Kaufman prescribed an inhalant which he promptly called in and I promptly left to get. We are very fortunate to have a terrific pharmacist, Scott, and his wonderful staff. They consistently provide us professional service while showing just how much they care. I hope they understand just how much we appreciate them, especially in this particular medical adventure. The inhalant seems to have helped some, though we did have a rocky evening. Jerry wasn't the least bit hungry but was willing to have an Ensure.

For the rest of the world, this is Christmas morning and we wish each and everyone of you the merriest of Christmas. For us, it's the next day of our challenge to rebuild Jerry's strength. I am kind of a nut about Christmas, but I've found it necessary over the years to be quite flexible about the exact date due to the challenge of having family scattered all over the country. I know we will celebrate this holiday with some of the traditional fanfare (food, gifts, etc.) eventually, but for today we are celebrating what we see as the core message of the holiday: love.

I can honestly say that I love Jerry more today than ever and I see that love shining back at me from his eyes. We are blessed with loving family members who continue to boost our spirits from all across the country. We are deeply grateful to our friends, both in town and out of town, who have shown us love in many forms, especially over the past couple of months. In all the ways that truly matter, this is our best Christmas yet.

With love and deep gratitude, Merry Christmas and Happy New Year!

Safe and sound

Finally home, safe and sound.

Now the real work begins. For the past two weeks, Jerry has been confined to a small room and found simply crossing the room to the bathroom to be tough. Now we begin the process of rebuilding his strength. I'll do the bullying, he'll do the physical work.

We have to start slow because the doc said he was not to do anything strenuous. He is not allowed to raise his heart rate. Guess that means I need to keep my distance. ;-)

For those of you nearby, I may be calling on you for help, mostly simple things. I find it difficult to take the recycles to the curb, or carry in all the groceries, particularly the bottled water.

If you are feeling well, please call and maybe come by for a visit. I know Jerry is nuts about me, but, aside from medical personnel and two visits while at the hospital, I'm the only human he's interacted with for the past 4 weeks. We need fresh blood, so to speak!

I have an especially dear friend, Lisa, who has been a constant help to me throughout Jerry's time in the hospital. She even came over before we got home from the hospital to help me by throwing some bedding in the dryer! I am very, very blessed to have her as my friend - and she is an incredible hair dresser and handy ann! I feel deeply grateful to have such a caring friend!

Now, with him home and on the mend, I will have the best Christmas ever!

I'm going home!!!!!!!!

Dr. Kauffman just walked out the door after giving us the wonderful news. We're going home! He's now filling out the official paperwork and, when he's done, we're outta here. One of us will add more info later.

Musical Chairs...or rooms

Okay, it's now about 10pm on Sat., Dec. 22nd.

I was up and in the shower early this morning, figuring I could get it out of the way before the treatments and all the other stuff started. Unfortunately, they didn't tell me that they were starting the treatment later than usual...possibly so they could get the nasal culture back. The first treatment was pretty uneventful...no test results yet.

The second treatment started around 3:30. About 10 minutes into it, Dr Kauffman* walks into my room...this is a major no-no. During the treatments, nobody is allowed in there due to possible side effects. Anyway, he comes in to tell me that the cultures were back and, although still positive, much better than before. He then said if I can avoid any fever tonight and if I continue to look and sound better, then I can go home tomorrow! I'm not getting my hopes up...we've been this close before.

About 15 minutes after his trip to see me, Dr Kauffman came back again. This time telling me that I'm moving again. The good thing about this move is I've got better wi-fi, no more dialup. The bad thing is the room is smaller and has a traction apparatus above me. Instead of a pair of big corner windows in the first room and a single large window on the ground floor, this one is about 3 feet wide but angled in such a way that I can't see anything.

Some of the nurses asked if he really came into the room? Yup...they couldn't believe it.

I'm not exactly sure of my room number...the door says G534 but the note on the whiteboard says G533. BTW, they have me listed as Gerald Lipsky. The phone number should be 404-7122-3533 or -7534. However, during the tent treatments, I don't answer any phone...it's hard to talk through the mask.


*who you might recall was my first Emory doctor. When I came to the hospital, I was seen by Dr. Lonial and then Dr. Lechowicz...they each do a 2 week stint here at the hospital. Now it's come full circle and I'm Dr. Kauffman's patient.

Embarrassment

Okay, I'm a computer geek..have been one for many years. Guess who got me back online? Yup...Alice did it.

When I'm discussing work, she often asks a question from an angle that I wouldn't consider. Her question usually points me to a new way of looking at the problem...giving me a nice clean solution. This time, she asked a very simple question:

Don't you have a dialup modem in your laptop?

The answer was 'Duh!' I called a coworker who got me the phone number and I was up and running, albeit at old-fashioned dialup speeds. But hey, it works.

So what's been going 0n? Not a lot. Blood tests, CT scans of sinii (sinuses) and chest, x-rays, etc, etc. As Alice mentioned, we had a major letdown earlier this week. We were told I was going home, just waiting for the official discharge papers. A little while later, they recanted. The culture had come back positive and I was going to have another series of the tent treatments.

I can deal with everything they throw at me, except for these treatments. They screw up my entire day. If it weren't for them, I could justify the extra time here because the longer I'm here, the easier it will be for Alice once I'm home. Apparently, my numbers are good enough for me to go to a restaurant with no mask on...as long as it's not really crowded.

Alice mentioned two of the angels here; there're several more. Vani is special, asking the doct0r questions any time she sees something unusual. After spending a day waiting for a nasal culture, she took the initiative to ask the doc if she should get one. There have been so many nurses, some very good, some not so good...but this is only from my perspective.

So, bottom line is I'm back on and will, hopefully, be able to keep the blog more up-to-date.

And the wait goes on

Our slight set back is growing quite tiresome, mostly for Jerry. The treatment for this nasty RSV is two 3 hour stints alone in his room with this ghastly mask on inhaling this riboviron that is supposed to kill the virus. His spirit has taken a beating, but he's a champ and he keeps bouncing back.

I am learning the odd realities of hospital time. When we've been told 5 or 10 minutes, it's never been less than half an hour. When they say half an hour, bet on at least a full hour. "Coming right down" to get Jerry for tests is typically "sometime" within the hour, if we're lucky. I realize that Jerry is not the only patient (though of course he's the most important one!) but it amazes me that anything manages to get done on hospital time.

We've met quite a number of terrific nurses, but there are two who have proven to be true angels: Ida and Carrie. Ida works on 7E, the bone marrow transplant ward. She has come down to visit Jerry several times on her break or on the shift change since he was moved. She brightens his spirit just by showing how she truly cares. Carrie works on the ward where Jerry is currently staying. She is unfailingly pleasant and cheerful and has consistently been promptly responsive to any requests we've made. She has paged people to make sure they respond during the time windows between Jerry's tent treatments and always follows up to make certain the people who need to show up do so. We both feel so well cared for when she is there.

When I go back this evening, I am going to attempt to get Jerry back on line by using old fashioned phone line. He really does need his window into the world. Let's hope it works!

I deeply appreciate the notes and phone calls. Sometimes it can feel like I'm trying to take care of Jerry all alone, but you wonderful friends have perfect timing and reach out just when I/we need it most.

We need 36 hours without a fever to bring Jerry home. He had a fever today around 2; let's hope that is the last one!

Slight setback

I thought I would be bringing Jerry home tonight or tomorrow at the latest. However, this nasty childhood RSV virus (I recognize my redundancy) hasn't quite finished with him yet. It's so darned frustrating!! As of earlier today, he will require two more days of treatment, but we're still not certain if that means he comes home after another two days or what.

I have decided to begin my Family Medical Leave because I cannot seem to be there when the doc is, so I'm going to basically camp out at the hospital all day asking lots and lots of questions. I am not limited to just one room, like Jerry is, so I can wander and find new people to ask my questions.

The folks at Emory are terrific, but just like the rest of us, they have their own language and don't always remember to translate for the regular folk. I intend to have them translate until I fully understand.

I'm off to spend some quiet time with my handsome husband!

Communication glitch

Dearest family, friends and other interested parties, Jerry has asked me to let you know that due to the inconsistent signal from his new room, he is not able to update this blog at this time. Which also means, I'm sorry to say, his picture won't be posted until he's home again.

The good news is, he may be home as soon as Wednesday!! I'm trying not to get my hopes up too high because I don't want to experience that nasty pain of disappointment.

Jerry pointed out to me today that I haven't been blogging about how I am doing. I told him that how he is progessing is much more interesting, but he gave me one of those looks, so I'll try to share how it is from my side of the room.

Mostly, I'm grateful, but tired. I am deeply grateful that we found this early, that Jerry was in such awesome shape and especially for all the prayers and thoughts sent our way. I'm grateful that he seems to be responding well and that the nursing staff all seem to like him so they take especially great care of him.

I'm tired because I've been operating outside of my normal routine for a while now and that seems to take more energy.
I am tired of Emory Hospital, even though I am grateful for all the terrific care they have given and are giving my husband. It's still a hospital and not the cheeriest place to be. I'm tired of doing the grocery shopping! Jerry has always been the better shopper (he reads labels and compares prices) so I gladly agreed to his handling that.

Most of all, I'm tired of not being able to kiss my sweet, handsome husband and of not being able to sleep with him. This new room doesn't even offer a comfortable chair to try to sleep in! No more pajama parties!

Happily, my gratitude far out weighs my exhaustion! It is what keeps me going and keeps me smiling.

We'll be sure to post when Jerry will be leaving the hospital, then he will catch up on his side of the story.

Thank you for listening and for caring!

Back a week--Written off-line on the 16th

Well, it's Sunday night and I haven't done anything here in the blog for quite awhile. This time it's not my fault. Among several other shortcomings here in the dungeon (actually, it's the ground floor but feels like a dungeon) are almost non-existant wifi. When I can connect, it seems to die within about 5 minutes or so. It's been frustrating as all !@#$ trying to do anything.

Anyway, I finally figured out that I can still do entries off-line. Once I'm released, I'll post them.

So what's been going on? Friday evening, I had my first tent treatment. Not what I expected really. They came in with this industrial exhaust fan/filter (think large home ac filter, but pretty thick) and a plastic tent, maybe 8-10 mils thick. They put it over the head of the bed, covering my upper body. Then, they cut away the entire front of the plastic. The exhaust filter sits in here with me, right behind my head.

On the side, they have a funny-looking box, where they place a bottle of liquid. A pump draws fumes from the bottle and passes it to a hose that connects to the face mask. They turn on the exhaust, turn on the pump and slip the mask over my face. I lay like that for 3 hours at a time. I sure hope it's doing some good because it's rather hellish, mostly because of the length of time and how much of my day it sucks up.

That was about it for Friday. Saturday I got my new 'do. Alice took the promised picture today, Sunday, and I tried to post it...leading up to all the extra frustration. Sorry, as much as I'd like to keep things up to date, I can't do it all from my phone.

Saturday night, I received 2 units of whole blood. What a difference in energy. No more shortness of breath...of course, I can't actually walk anywhere yet, still stuck in this 12 x 12 room. The process of getting the blood was no fun though. Because of the quarantine during tent treatments, they can't really do anything during that time. So, the blood was done at bedtime. It takes two people to read numbers aloud to ensure that it's the right blood for the right patient. After it's running for 15 minutes, they check vitals. After another hour, they do it again. About an hour later, they change bags, doing it all over again. Suffice it to say I got no sleep that night. On the other hand, I asked for some benedryl before the next treatment and slept right through those 3 hours.

Also I had two treatments Saturday and two more Sunday. I'm now up to 5 total. The doc tells me that I'll have another nasal swab Monday and, if the results are clear Tuesday, I'm outta here Wednesday. No guarantees and I'm not packing until then.
entered Sunday 10pm
====================================

Yet another first!

When I first met Jerry, he had a full head of hair. He let me know, very early on, that most of it was a weave since he had begun to lose his hair in his 20's. It took a few years, but I like to believe I finally convinced him to give up the weave and show off his beautiful head.

I guess the chemo has made him young again: he started losing his hair again!

There are many things I've never tried or done. Some I hope to do one day, others I could pass on for the rest of my life and be happy. One of those "pass on" things for me has always been cutting hair and especially using any kind of hair trimmer. Not sure why, but it has always frightened me.

Tonight, it truly was an honor to help Jerry by shaving his head. I won't say I wasn't frightened, because I was. But more than that, I felt useful and helpful and that felt terrific!

Think about it: he's in a place where they feed him, change his linens, and focus on his well being. There's really not much of a practical nature that I can do for him. I know he values the time we share, as do I, but I find myself always wanting to do something for him. Well, tonight I did and for that I am deeply grateful.

My handsome husband has a beautiful head. I plan to take the camera when I visit tomorrow and he will post pictures here, somehow. We tried to take pictures tonight with his phone, but the lighting was poor so they came out too dark. Though I like his beautiful head, I will gladly welcome back his beautiful curls!