leatherman's log  
March March 2008
Week One |   Week Two |   Week Three |   Week Four
Week One:
Happy Birthday to ALL of us!
This month, the friends and family of mine who are having birthdays are:
Ritchie, Angie, Bonnie, Celia, Linda, Mike P, Austin, mIkIE (that's me), Jon, Kayla, and Mary K

There's only a few more coming in April - Joxer, Ella and Dennis.
Unfortunately March is blowing in like a lion. Things certainly aren't like they were just over two weeks ago, when I was happy and excited to take my trip with Tara down to the Carolinas. Now, I sit here typing this as the power flickers off-and-off due to an ice storm (that reminds me, gotta hit SAVE), and everything has spun out of control.
   
I know most months, I try not to bore you with my problems too much (cause we all have 'em LOL), but try to show you all the good things that happened. As I'm about to celebrate living another year (#46), and the 10 yr anniversary of being out the hospital, I've done all the stuff I've written about the last 10 yrs (another anniversary!) because I realized how precious life was by losing Randy. I do know why I've survived, but I do know that you've got to be proactive and get out and enjoy life while you have it!

However this month, too many things have started going badly, and I don't have any nice pictures and no fun, crazy tales. Instead, all I can do is tell you my problems and say how thankful I am to have you all as friends, knowing that your thoughts are with Jim and I right now.
First and foremost is Jim's health. Unfortunately he hasn't gotten any better. He has continued to run a fever (along with various other problems) for nearly 16 days now, making him sick for nearly 5 weeks. At the visit to the doctor first thing Monday morning, she decided that Jim needed to go to the hospital. That afternoon, the hospital collected all sorts of samples from Jim and began testing. They were supposed to come back with results the following day by noon. I waited with Jim from 11-3 before having to go run errands. Of course, the doctors showed up not 15 minutes later. Poor Jim was pretty fever-addled at that time and all he remembers is that the chest x-ray doesn't show pneumonia and all the other tests came back negative (what tests, I'm not certain. I know they were testing for TB and several strains of influenza, but more on that later). So after a day and a half, all that they have really done for Jim is give him IV fluids and Tylenol while keeping him in contact isolation! Tomorrow they are doing a CAT scan to look for an internal bacterial infection that could be causing the problem. I'll update you as I found out more.
 
These is one proactive thing I can do for Jim's situation (besides start fussing at the hospital tomorrow to get "something" done), and that is to ask you all to send Jim a Get Well card. Even if he was got released from the hospital tomorrow, he'll be at home for several more days recovering. Since I don't see that happening, a card sent soon could be taken to him in the hospital. I know it would help him. Usually healthy as a horse, Jim is quite depressed about what is happening to him. Thank you for your help in this.
Jim Pollnow
1608 48th St. NW
Canton, OH 44709
I guess I should talk about "testing" next. For as many things as I worry about and as much planning as I do, I really dropped the ball on this one. What I do know is that before Jim and I were together he had tested HIV negative and that we have always practiced safe sex. Of course, even though the chances are pretty good, safe sex doesn't come with a 100% guarantee. We probably should have been pro-active and had annual checks on Jim's status. As it is now, we have to wonder. Unfortunately, Jim doesn't know if HIV was included in those tests the docs said were negative; but I would think so, as my doctor's new partner is a consultant on Jim's case, and they do know about my status. Although the cause of Jim's problem will still be unknown if his status is still HIV negative, it will take a great weight off my mind and heart.
Quite frankly, I could use a little weight off my heart and mind right now. I understand that Jim's illness is not Randy's illness; but during the past few weeks, things have been eerily reminiscent of what happened in my past. Although I had a 9-day "mystery fever" a few Valentine's Days ago, Randy suffered through a similar month long fever just a few months before I got my positive diagnosis. Just a mere 18 months later, even before Hospice Care brought the hospital bed into our house, I had already been caring for Randy for several weeks while he lay quite ill on the couch. I have not only found Jim's month long fever disturbing; but every cold cloth I bring, every glass of water, everything I do caring for my Jim reminds me of my Randy. Being brutally honest, I'm nearly drowning in a sea of grief of what has happened and what is happening.
Time for some confession now. Some of the things going out of control are my own fault too. On that trip back with Tara, trapped at the tunnel and blinded by the blizzard, I smoked some cigarettes. I returned home and took to caring for Jim for the last two weeks, sneaking his cigarettes here and there. Finally, the day I took him into the hospital, I lost my self-control and did what I knew was wrong - purchased my own pack of cigs.
I had considered going back on the Chantix that we still  have left over; but I don't think I'm in the right frame to mind to deal with it's side effects of "vivid" dreams  right now. Unfortunately, I can only handle so many things at a time, and I just can't be "proactive" about fixing this problem. Maybe when things are better, Spring arrives, and I can get back on my bicycle and out in the fresh air, I'll be able to lick this habit
The power has gone off five times while I've tried to write this entry, but I'm nearly done
As many of you know I've had a problem of puking associated with nearly all my meds. I just quit taking some of those older regimens because of how sick they made me. However, with this last regimen, I've tried to stay compliant. It's helped that I've had the incentives of feeling better after all these years, and of being back in a relationship. I've been somewhat cavalier about the issue; but I've grown very tired of being sick from my meds even if it is "only" 4-6 times a month of throwing up compared to nearly every day.

Up until the last weeks, the only time I skipped any meds were on days that I just couldn't "afford" to throw up. That means like days in the amusement park, pool parties, and yes, even sometimes on my trips back home. My numbers has stayed nearly constant for the last four years, so I can't say that any harm came from my actions.

However, in these last weeks, I've missed quite a bit of my meds. My excuse? The same as it was back in the past, "one of us has to stay well enough to care for the other one". My first morning back from the Carolinas, I was sick and barfy; but Jim was sicker. I skipped the rest of the meds that day. And you know how those things go... one thing leads to another... and a week had gone by. Then two.
 
Just before I end, on the one happy bit of information in this update, I should tell you the ironic twist to all my troubles. Just a few days before I took Jim to the hospital, after smoking again, after being very un-compliant about taking the meds, after being exposed to all sorts of germs that have made everyone around here sick lately, and all that stress, I had to go have blood work done for the results that I'll get the day before my birthday. I don't think that I'll be surprised if my numbers aren't very good this time.

The doctor and I will have a lot to chat about this visit, that's for sure.
 
The good news that I  would like to leave you with is that I'm still struggling to fix what I can and not giving up. I've been totally compliant to my meds for four days now - even though they made me throw up this morning before I went to visit Jim in the hospital. So that's one issue handled. I promise to work on the smoking problem soon!
3/5
I headed back to the hospital today, determined to talk with a doctor. Over 48 hrs and Jim was still battling a fever with only iv fluids and Tylenol. Except for the results from the tests, I could have cared for Jim a lot better (and easier on me) at home rather than running up a bill at the hospital.

After putting off our calls all day, the doctor finally showed up in the late afternoon. Even though I wanted to be mad at him for not helping more, he turned out to be an alright guy. Unfortunately, it takes time for some of the tests. We do know now that Jim doesn't have pneumonia, mono, TB, hepatitis, influenza, and a bunch of other stuff. But that's all we know right now. HIV status and several other cultures are due to be ready tomorrow. They did a cat scan tonight to look for a possible internal bacterial infection that could be making Jim sick.
 
Jim seemed a little less in the dumps tonight. Just knowing what he doesn't have, getting that scan, and seeing some movement toward a solution has helped his spirits some. But the poor guy is still pretty sick running a fever, vomiting, has no appetite, got diarrhea, and very weak. No matter what he's got, it's going to take him a while to recover.
3/6 still no news on the western blot. however there was news from the cat scan. Cancerous tumors in the colon, on the liver, and another "mass". Egads! and I was worried that a positive hiv result was going to be the bad news. But that result is still pending, so it still could be a bonus .

tomorrow at 11 is the colonoscopy and bioscopy (wow, first time typing those words). then we wait to find out if it's bad news, really bad news, or really, really bad news. (i should also mention that I'll be making my trip to the hospital tomorrow during a storm predicted to be 7-12 inches of snow!) Jim's dad died at 42 from a heart attack; and his mom was diagnosed with intestinal cancer during a surgery, and passed away 6 months later at 54.

Fourteen years ago I sat beside my lover on his hospital bed and promised to take care of him throughout whatever (be it death, infirmity, or hopefully recovery). Then I went home and prayed (damn that Baptist upbringing!) that God would at least let my partner live peacefully until his birthday in July.

That was Dec 1993. Randy passed away May 1994, before his 30th birthday on July 9th.

Tonight I'm going to have to make that same promise, come home and pray again, and hope that Jim is still with me on his 53rd birthday on July 29th.
3/7 I got home from the hospital last night, and finally got around to washing my own clothes (we're about to have a serious snow, and all my thermals are dirty). Just as I was about to start my clothes drying, I got a call from Jim (it was 11:30pm). He has gotten very sick (very puke-y) and was crying so hard. I threw some dirty clothes on, shoved some essentials in a bag and headed back, where I spent a miserable night as Jim was not only sick but starting the regimen to clean his system out for the scope.

The orderlies had just got Jim loaded up to go for the colonoscopy, when our ID doc stopped by. He sent everyone out of the room and closed the door. Of course, that is never a good sign. Well, the western blot has come back positive.

I've got 2 or 3 hrs now while Jim will be out from this procedure, so I had to trek home (there's already 2 inches of snow on the roads and nothing had been plowed!) so I can shower, change, get some comfort from my doggies, and pass along the bad news.

Somehow now, I have to find the strength to go back (and it's still snowing!) in just a few short hours and deal with all of this. The doc (doing the procedure today) is supposed to come by late today with a prelim report on the results from the scope. The official biopsy results "may" be in by tomorrow.

I'm just so sad right now, I can hardly stand it.

Thank you again for all your thoughts and prayers.
3/8 Lordy, it's a freaking blizzard here in Ohio! Even after clearing 6 inches of snow off my drive yesterday, there was a foot of snow on it when I returned this morning from the hospital. Matter of fact the car got stuck just as I entered my driveway. I had to clear out that foot of snow, and my neighbors helped me push my car out of the drift and up into the drive. Then I had to shovel a patch out back because the dogs wouldn't even go out as it was over their heads! I made arrangements with Jim to stay home tonight as the actual blizzard conditions are coming this afternoon. (I can't wait to sleep in my own heated water bed, even if I had to sleep in it alone.)

Unfortunately there were no conclusive results from the colonoscopy. So while they did an EDG scope (through the throat and down) this morning on Jim, I grabbed some breakfast at the McDs downstairs in the hospital. While I was eating, who should I see but MY ID doc! It seems his partner, the one on Jim's case, lives in Akron and couldn't get the 20 miles down the interstate, so my doc came in to take over the cases for the weekend. I must say how much I have appreciated these two docs. They, more than any of the other docs, have kept us informed about what been happening. (my doc told me he knew I had an appt soon as he had seen my results come in yesterday. I teased him about wanting that appt. fee on Thurs rather than bringing my results in with him. LOL I told him I didn't know what to expect, but if they weren't so good, with all this stress I've been under, I wouldn't be surprised. Of course, he countered by asking if I had been taking my meds. Oops! I must have hesitated too long or something, cause I got a glare and was told that we would "discuss" that issue then on Thurs. I'm in trouble now. LOL Wait till he hears about me smoking again.)

More importantly though, these two doctors have been the ones who have really helped to keep Jim's hopes up. Although they've been pumping Jim full of IV and pill antibiotics, he's still has a fever. With each non-result, Jim has gotten more depressed (if that's possible) as he approaches a week in the hospital. I'm starting to feel bad too as I told him we just needed the colonoscopy to know what to do; and then just needed this EDG scope to know. Now they are saying it may take exploratory surgery to get answers. Unfortunately, I'm going have to keep telling him to hold up through one more test, until we know how bad things are.

Personally, I was ready to wait for a viral load and some conclusive results about the tumors before worrying about the HIV, but not the "hopeful" ID docs. They started Jim on Atripla yesterday. I was very good and didn't say anything about how much I hate Sustiva (a component of this 3-in-1 drug), nor did I mention any side effects (even when Jim said he had been having some weird dreams from the time I left the hospital to when I called to say I had made it home through the snow). Maybe we'll get a little bit of luck and the Atripla will do fine for Jim.

The docs are going to do another ultrasound later today. I'm hoping they don't schedule any surgery for today (but if they need to, then the sooner the better). If they do, I'll brave the snow and head back. In the meantime, I'm going to crash on the couch for a while and just watch some of the TV that been recorded (just last week we got the new ATT U-verse service and a DVR). I'll tackle the driveway again after I get some rest, just in case I do have to go out again. And yes, I'll take my meds tonight with dinner like I'm supposed to. 
We've been debating when a huge tree limb in DO's background was finally going to break and the recent ice storm finally did it. During Jim's first night in the hospital, a light freezing rain went through coating the tops of trees and power lines with ice. The weight of the ice finally pull the branch apart.
Thankfully, the huge branch fell against another tree and didn't come all the way to the ground. It probably shouldn't be able to reach the house if it fell more; but you never can tell with something like that.
John and Sean followed me out to take pictures of the tree and got caught by the camera themselves.
It was just a couple days later that the snowstorm came through (the one making my trips to the hospital even more nerve-racking). I took this picture standing in the spot where my car had been stuck.
(click this picture to see a larger version)
As fast as I could clear the driveway, the falling snow had added another inch or two. You can see the snow blower power cord already being covered.

If you look carefully, you'll see I'm being watched.
MouseOver this picture to see which doggie was checking out my snow-blowing techniques.

I had to throw a snowball to get them to look out the window again to actually take this picture.
It took a while to actually find and dig out my driveway lights
Next I had to shovel snow out back. I had tried to let the dogs out when I got back from the hospital; but when I got the screen door opened, they wouldn't go out. The snow was so deep that it was over their heads and probably looked like a white wall from their level!
I didn't have it in me to dig out much more than a run for the doggies. Boy is my back going to be screaming after two nights on that hospital pull-out chair/bed, and all this snow shoveling. I've had to take two showers since coming home to get warmed back up. (Don't worry, I have been "trying" to take it easy. I've just too much nervous energy going on right now. I've made sure to take frequent breaks, and have been bending from my knees before pitching the shovel-fuls of snows )
MouseOver for a good CloseUp of the Boyz
Aries really, really, really likes the snow. He eats it by the facefuls!
Even though the Boyz really wanted to go out in the big backyard (like we did the other day when there was only a couple inches of snow and the ground and they had been trapped in the house all night without either Jim or I), I couldn't even get the back screen door to open!! Just a few inches past the door the snow drifts up nearly 3 feet tall clear over to the pool.
I wasn't digging any more paths for them to play on.
Week Two:
3/9 In all, I cleared 20 inches of snow off the driveway. Heading back to the hospital this morning, I was the only car on I-77 and thank goodness cause the roads were still a mess. Although the roads had been plowed, you still couldn't see the asphalt at all. Driving across all that packed snow and ice was very bumpy and probably not good at all for the suspension; but that's a worry for another day. 

Although Jim isn't much worse (though he keeps getting thinner and weaker each day, and he's still running the fever); he definitely isn't any better, even with all the antibiotics being pumped in. The doctors weren't able to determine anything with the EDG scope either.   They are trying to run another ultrasound but because of the snow, the nurses have been on a double shift, and most of the staff was simply unable to come in. So, we're really hoping they have the staff to do that procedure tomorrow. Several of the doctors have explained to us that the "mass" in  his belly "may" be close enough that during the ultrasound, they "may" be able to stab it with a long needle and get a sample. One theory is that these spots still might be pockets of infection, while cancer is still the top choice. Either way we might be able to finally get some sort of indication with this kind of test.

I'm doing the best I can to try to keep Jim's spirits up and him agreeable to just "one more test". But it's tough when tomorrow at 1pm, he will have been in the hospital for a whole week without a resolution to the cause of his illness (much less having suffered with this for the previous 4 weeks).

As for me, I'm feeling so-so. I probably did way too much, clearing out that snow, and the meds I took at dinner made me feel real queasy for a couple of hours. (I didn't barf though. WooHoo!) However, I did enjoy a nice night back in my bed even if it was without Jim - at least I had the three dogs with me. After a visit in the hospital for most of the day, I took a few hours to have a wonderful turkey dinner (with all the fixings) at my Ohio mom's. Of course, now I'm back at the house, taking care of the dogs, updating everyone, and packing a bag to stay over at the hospital tonight. I really dread sleeping on that pull-out chair another night, but if we finally get a break, I'm hoping I "need" to be there in the morning when they finally get a conclusive result.

I'm worn-out, drained, emotionally numb, and tired of Winter;
but still hanging in there!
3/10 am Just a short (sorta LOL) update this time folks, cause with that snowstorm keeping so much of the staff away, not much has happened.

The nurses took pity on us last night and, after giving Jim a sleeping pill at 10p, they actually left us alone for most of the night. Sure they were back in at 430am to take vitals, change IVs and stuff; but I'm sure I slept soundly for about 6 hrs, and Jim got even more sleep because he doesn't remember them coming in and doing any of that. Also I'm happy to say that he's been eating some.   He's hardly eaten much of anything for nearly 3 weeks, so seeing him eat a grilled cheese sandwich last night and french toast this morning made me feel a little better.

The doctors were by this morning and scheduled the "ultrasound/biopsy" that was put off all weekend for 230pm. Cross your fingers that we can get some results today (at this point, I could care less what they are, we just need to know what Jim's problem is for sure).  So, I'm packing back up (just in case I need to stay at the hospital again; though I'm hoping I can get another night back at home) and heading back to the hospital this afternoon.

Let me say again how much I've appreciated y'all's concern for not only for Jim but myself too. Every trip home I find a couple more posts over at the aidmeds.com forums and another handful of emails in my inbox. Knowing so many people from literally around the world are sending out good thoughts, prayers, vibes and hugs for us sure has helped me struggle with this raging bout of depression and hard times. 

Now I'm gonna go play with the doggies for a while so they don't think they've been totally abandoned.
3/10 pm Still no conclusive results about Jim; but we took a great step forward this afternoon towards finally knowing something.

Thankfully, I got back to the hospital just as transport was about to take him for the ultrasound. By now many of the nurses, doctors, and staff have begun to know us too well after we hit the "week" mark at 1pm today (especially since we were some of the few people in the hospital during the snowstorm throughout the weekend). They allowed me access to the hospital at some odd hours, offered me drink and food, and today let me go with Jim for this procedure. (they also told me, even though Jim had asked them not to, that he hadn't gotten very sick after I left, and lost the breakfast he had eaten.)

I got to watch while they did the ultrasound and actually "saw" part of what's been causing Jim to be sick - a mass about 6 inches long and nearly two inches wide. Yikes! However, they did send me out of room as they did the biopsy. Again they treated me kindly and gave me a chair to sit on in the hall right outside the room, instead of sending me down the hall to the waiting room.

After about 15 mins the doctor came out to speak with me. You know how sometimes you can almost forgot about a bad thing, and then it'll hit you like a mac truck? The doctor wanted to how long Jim had been HIV+ and if there was any special considerations he should know about. Right now I haven't really thought much about that diagnosis because the other issue (the tumors) is of much higher priority.

One day I'm going to have to come to grips with that and the small nagging question in the back of my mind as to whether this (the hiv) is my fault. It's just been Jim and I for the last seven years (he had tested neg beforehand), so I almost have to assume that somehow we fell into that teeny-tiny percent when the safe sex fails. Maybe a geno/phenotype test will show something to the contrary but until then I'll have to think that somewhere we must have not been careful enough.

A pathologist also was waiting outside in the hallway to test the sample, in case they had to go back in with a larger needle to obtain a bigger sample. Thankfully, the doctor was able to obtain what they called a "very nice" sample with just one needle stick, though it took nearly an hour. The biopsy doc told us it could still take up to 3 days to get the results; while the cancer doc that stopped by when we got back to the room said that he's expecting the results tomorrow night or the next night at the latest.

After spending tonight at home, I'm sure I'll be back at the hospital most of tomorrow afternoon and night. Unless something unexpected happens, I probably won't post again until after we've gotten results from the biopsy, so you may not hear from me again until wed or thurs.
3/12 am Jim had a pretty rough time yesterday. He was having terrible nightmares, and even hallucinating some as he dozed off and on. (more about that later) As the day wore on, his fever keep bouncing higher (finally hit 104), he was hit was some bad diarrhea and vomiting, and eventually started a really harsh cough. By the time American Idol was over he was having chills and the shakes.  Needless to say, with him that sick, we both were pretty scared. I remember being curled up in the corner of the bathroom crying a couple of times.

Some motrin knocked down the fever, cough syrup helped with his coughing, and the resterol (instead of Ambien) knocked him right out. Although the nurse popped in and spoke with me a few times through the night, everyone was really quite and Jim finally got some decent sleep from 1030p to 730a. I was frustrated though that no report came through about the biopsy results.

I was even more frustrated when Jim's GP stopped by in the morning, and told us that the other doctors didn't believe that they had gotten a big enough sample to determine anything. (Argh! That is NOT what the pathologist said after the biopsy!) His GP seems to be pretty good though and went to track down both the ID doc and the cancer doc to find out what the heck was going on. When she returned, she had gotten some answers for us. The sample was large enough for them to determine that it's some type of lymphoma. They're scheduling a spinal tap soon, an ultrasound of his liver this afternoon, and a bone marrow biopsy on Fri to determine the actual type. They're also going to be putting in a port soon so that can start the chemo. (it sounds like it won't be too long until Jim doesn't have to worry about that bald spot on the back of his head anymore, as his whole head will be bald. LOL)

As to Jim's nightmares/hallucinations, I had a good talk with one of the nurses and was happy to hear that she had read up on Jim's meds. While several nurses believed his nightmares could be from the Ambien, I'm certain it was the Atripla. After discussing the situation with his ID doc (who still didn't have a viral load count), we got Jim taken off that med - and no more nightmares!

At home for part of the morning and afternoon, while I'm washing up some of Jim's clothes, I'm baking some of my Amish Friendship Bread muffins for the nurses who have been such so kind and helpful (lemon/cherry/walnut, orange/cherry/walnut, and chocolate/cherry/walnut). Oh and my picture is on the front page of the local paper this morning! Yesterday, on the way back to the hospital, I had to stop for gas. The paper had a reporter and photographer reporting on the high gas prices - $3.45 a gal! About half a doz friends called this morning, surprised to see me in the news! (see below for the pictures!)

If Jim is doing alright later tonight, I'm hoping to sleep at home tonight. I need to spend some time researching about lymphoma. I read some in the aidsmeds.com forums where other people have done quite well after treatment. That gives me back some hope! I won't be getting Jim home for my birthday (friday), and it's going to be really tough for a while; but at least it doesn't look like I'll be having to make funeral arrangements.
On the way into the hospital, there I was in the newspaper box for everyone to see!
And it wasn't just a little picture of me either (although my quote of  "It's terrible" was pretty small). My picture takes up nearly half the page above the fold. WooHoo! I'm a star! Every time I walked down the hospital 7th floor hallway today, another nurse or aide mentioned that they had seen me.
Click for a Larger version  
I got even more acknowledgement by the staff for the 6 dozen muffins I cooked and took in this afternoon.

Jim and I have only dozed off and on through the nights at the hospital (I think they have a rule to wake up your every 2 hrs. whether you want them to or not. ) Lying awake in the semi-dark of the room, as you can imagine, we've talked about many things. Last night, while he was so sick, we discussed just how nice the hospital staff has been to us. There are two aides from another floor who filled in during the snowy weekend, who stop by daily to check on Jim, along with four transporters who have been carting Jim around to his scopes and exams. Although it had slipped my mind, Jim remembered that it was time to bake some muffins again and thought that we could show some appreciation by making a big batch for the staff. It must have done the trick too, because we had a steady stream of staff in the room this afternoon thanking us and telling us which ones were they favorites.

DO and the gang are going to have to wait just a little bit longer until I get around to making muffins for them again. The last batch went to my family (and Tara) on my trip to the Carolina. Now this batch went to the hospital staff. Then today I promised several of them that if Jim is still there in another 10 days that I'll make them the next batch. I'm really hoping that Jim isn't there that long; but if he's back home, I think I'll still make the next batch for the staff anyway.
Many times when Jim and I are on one of our "adventures", we end up with pictures of each other that we took at the same time. Since Jim isn't up and about to take pictures right now, I handled shooting from both directions.
Looking from the top floor of the parking deck towards the main building of Mercy Medical Hospital, just off of I-77

MouseOver to see where Jim's room is
 
Looking out at the car in the parking deck

MouseOver for a CloseUp of Darth
Even though the temps have been steadily rising this week, there are still huge piles of snow everywhere in town.
3/12 pm It seems like I've had nothing but bad news to tell y'all (especially with Jim being so sick last night); but I have, if not good news, at least some nice news to report. Today was a much better day all around.

I was the talk of the floor for not only being pictured in the newspaper (check out the attached pix!); but my muffins were a hit! I'm pretty certain, from the stream of staff stopping by to tell us their favorite flavors, that I guaranteed the staff treating Jim as good as they have been. 

And they really all have been quite good about caring for my Jim. By now, every one of the floor nurses have been on at least two shifts taking care of him. There are also two aides from another floor who filled in during the snowy weekend, who stop by daily to check on Jim, along with four transporters who have been carting Jim around to his scopes and exams. What can I say? Even sick and deadly scared, we're loveable. 

But the really nice news of the day is that Jim felt much better! Oh, you can still tell that he feels like crap but most of the day his temp was normal and he was more alert and talkative. Several of his doctors also starting floating the idea about Jim being able to come back home "soon" (though I don't think their idea of "soon" is the same as Jim and I's idea of "soon". LOL Unfortunately I could see this continuing for another week or more) We still haven't celebrated Valentine's Day, and I won't have him home for my bday, so we're going to have quite the celebration when I do finally get him back home. 

Tomorrow afternoon about the time I'm going to see my doc (Lordy, I'm starting to dread that!  ), Jim will be having the surgery to have a port installed since he'll be starting chemo soon. That's good to hear too. In the last few days, they've had to move his IV 3 times because it keeps "leaking".

The only dark spot of the day was a little bout of diarrhea and hour long temp of 99.6 that I had this evening. I think it's just me being worn-out. I'm back at home for the night, ate a decent meal, took some tylenol, kicked back and watched Idol and felt 100% better. Now I'm off to a night back in my king sized heated water bed. Ahhhhh!
3/13 pm Today had it good points and bad points.

First the bad stuff to get it out of the way.
I spent some time hiding out in the bathroom crying again. Jim was very "out of it" today. He'll doze off while talking and I swear he's begun to sleep with his eyes open - which is very eerie. Blame it on the fever, the meds, and that he hasn't eaten in about 4 days - but at least he's been swigging the ensure. He wasn't much better after returning from having the port installed. Since he was out of the room from 2p-6p, I kicked back on the hospital bed and got a short nap in. I wasn't certain though if he even knew when I left this evening. Jim did call me later in the evening and I ran back up (the hospital is about 15 mins away) for an hour while he was more alert and wanted some company.

I also found out today that Jim's tcell count is 119 and his viral load is 300,000.  So I guess we really can't put off the hiv meds till he's feeling better. I want to say they have switched the Atripla to Truvada and Kaletra; but I can't swear to it. There have been so many antibiotics (bactrim, flagyl, and a few others) and so many different doctors, I'm just going to claim I can't remember it all due to HIV brainfog rather than getting older.

Now for some of the better news from today.
Things actually went pretty well when I went to see my doc. We started with a good laugh about how much we've seen each other lately - at the hospital during the snowstorm, my picture in the paper and now at his office. (yes, he knew it was me in the pix right away too. My ponytail, sunglasses, and leather jacket are dead give-aways.   I was also noticed by the cashiers at our local grocery store and the convenience store clerks where I get gas. Ah, don't worry. I won't let the fame go to my head. )

For some reason no tcell count was returned. He said we could probably guess that it was 250 or 300. I had to laugh and point out that that in the last decade it's only peaked at 311 once, so let's use the more realistic 250 since that's what I've had for a while and they seem to be doing the trick. (although, there is a tiny chance I may be catching a cold. I keep pushing it away though and hope that some rest tonight and some cold med fix things up)

My viral crept up a hair from 75 to 189; but I had a big ol' blip up to 2754 at the end of Aug, so this slight increase was nothing. I've been undetectable 4 times since 2004 but just can't seem to keep it there. So in the long run that was decent news about that result.

We talked about the smoking but he was pretty sympathetic to my plight. We decided there are worse things I could be doing under the stress , so he wasn't going to fuss at me.

Of course, we talked about me and the meds too. Unfortunately between the drugs I won't take and the ones I'm resistant to, I'm stuck with a regimen that includes norvir. Sigh! (Won't Jim and I just be a pair back home in a month, both of us puking into our respective buckets. ROFL) We also chatted about the doses I've been skipping. While he doesn't, and can't, approve; he did understand how I'm caught between a rock and a hard place. (I talked about not "hanging over a toilet puking while Jim could be in the hospital dying"; and he talked about the "societal complications of adhering to a regimen". ) I promised that I would try to start taking all of them again and he promised to make me have my counts done EVERY month now.

it's almost midnight now and I plan to start my bday off sleeping in my own bed!
3/14 pm Thanks for the birthday wishes guys. 
WooHoo! I've been poz for 16.5 yrs, had aids for 12 of those years, nearly croaked from PCP and pneumonia, and never ever imagined that I'd make it to 46.

I forgot to tell you about the package I found by our front door last night. My sis-in-law had sent me a cryptic email telling me to watch for the mail; but I wasn't expecting a package. What I saw when I opened the box was the perfect gift for Jim and I at this time. Inside were several magazines, several boxes of assorted munchies, a box of kleenex, a deck of playing cards, two other card games, a book of puzzles, one of those 20-questions electronic gizmos, along with a bday card for me, and a get-well card for Jim.

I knew I wasn't going to get what I really wanted for my bday (for Jim to come home); but I didn't expect this day to take such a bad turn. I had chatted with Jim this morning and he was doing as well as could be expected. My plans for the day were to visit him about noon, then go have my bday dinner and cake, and come back for another short visit.

However, I arrived at noon to find our end of the 7th floor hallway filled with doctors and nurses. It seems that Jim had a really bad night (diarrhea and vomiting, and he's too weak to get out of the bed now) and things weren't getting any better - things were actually getting worse. His fever was back up to 103, and the chills and shakes were back with a vengeance. They had him hooked up to several new monitors and back on the o2, because just moving around in the bed was sending his heart beat racing and his o2 level was terrible. After everyone consulted, they stuck him with another IV for another antibiotic, and then sent him for another ct scan to see if blood clots were forming because of the port they installed yesterday. They also decided that his situation was bad enough to move him out of his room and send him down to CCU  where they could monitor him more closely and more aggressively treat his myriad of symptoms. (you'd think being this sick, Jim's weight would be down; but down in CCU, we learned that Jim has actually gained 20 lbs from all the ensure he's been drinking LOL)

We've been living in that room so long, that it took me a couple of trips to move my pillow and blanket, Jim's clothes and my travel bag of clothes and stuff. I told the nurses, it felt like I was running away from home. 

Luckily by the time they transported him for the scan, they had gotten the fever back down so that the chills stopped. For several hours, I followed while they moved Jim around the hospital - without any lunch, no cigarette breaks, and buzzing off some cold medicine. 

After getting Jim settled into CCU and doing so-so, I went over to my Ohio mom's for dinner (and I really needed some food by then and we had big ol' juicy burgers) and birthday cake (mmm, sugar buzz!). Oh, and my "mom" got me 2 muffin pans as a gift, so I can give the ones I've been using for nearly a year back to her. 

Of course, I made another trip back to the hospital and had a little good news and bad news again. The good news was that Jim was a little more alert and watched a couple episodes of "friends" and nearly all of "house" before getting very tired again. The bad news was that his body, from about mid-chest down to his feet, is quite puffy, and there's blood in his urine.   With all these problems now, I don't know how Jim is going to be when they start the chemo within another day or two.

It was very hard tonight explaining to Jim that I needed to leave. I explained that he hasn't seen me crying, because I'm trying to stay strong and supportive for him. The doctors talk like all this will still get better, so I've been trying to stay optimistic so that he would feel good about fighting this off. I made sure that he understood that I still think he's got a chance, so I need to take care of myself too, so that I'll be able to assist him when he does comes home. I was leaving him in the best possible care of the hospital and didn't want to be in the way of the nurses if he had another bad night.

A week ago, I drove home in a huge snowstorm, afraid I was about to lose Jim. A week later, after an afternoon of rain melting the snow-pack, I drove home in "thick as pea soup" fog, still afraid that I'm about to lose Jim.
3/15 The nurses tell me that Jim didn't have too bad of a night last night. They got him shaved and washed up since he had been too sick for me to do that the last couple of days. Being clean always makes you feel better.

Still no day set to start chemo. They're hoping to get him a little better first. The ID doc pointed out that as soon as his viral load starts dropping from the meds, that should help him start to feel better too. (Goodness knows, I remember how sick I felt with a vl of 300,000). The docs are also optimistically saying that if he doesn't get any worse again, that maybe tomorrow they'll move him out of CCU and back up to our old floor. (though another day would give me a little more of a break. I don't worry near as bad being away from him right now when he's being watched by his own personal nurse.)

He had a couple pieces of toast, milk and grape juice this morning and had nearly the whole bowl of chicken broth at lunch. After that though, they shot him up with a pain med and he zonked out. Even though I've gotten some decent sleep myself the last couple nights at home, I couldn't stop yawning today, so I went home, curled up on the couch with the puppies, watched some tv and zonked out myself.

About four hrs later, Jim woke up very disorientated and upset. He called me but just wasn't awake enough to understand that the call went through. By the time I got back to the hospital, he was much more alert. (the nurses decided to half the dose of the pain med the next time he needed it, since it messed him up so badly) He ate a grilled cheese sandwich and a bowl of chicken broth today which was very heartening to see.

So this wasn't too bad of a day, all things considered.
Week Three:
3/16 Sorry I didn't get an update online yesterday. It wasn't such a good day for me.

The day started with Jim calling me several times asking me when I was coming to the hospital even though the night before we had decided I would be there by noon. I kept telling him I'd be there soon. What I didn't tell him was that I woke with a 102 fever and was trying to get my temp down, so that I felt well enough to drive. I made it to the hospital by 11, and I had hardly gotten into the room before Jim started fussing at me.

I should interrupt my story here to bring you up to date on Jim's condition. His fever had stayed down close to normal for about 24 hrs finally. From the waist down, his body is quite swollen from a buildup of fluids. They had started a transfusion of 2 units of blood, so there are enough hanging iv bags now to require two pumps and two iv stands. Also Jim was pretty upset because the cancer doc had stopped by and, once again, mentioned about sending him home soon. Of course, he is in no shape to come home yet, so I believe Jim misunderstood the doctor, thinking he is about to be sent home to die.

So I arrived, and Jim started fussing. He actually said that I haven't been there enough for him through this crisis, and that he was upset with me for staying at home so much. I bit my tongue and didn't say anything until the nurses left the room. I pulled out my thermometer and popped in my mouth. In response to his questioning look, when the thermometer beeped, I showed him that my temp was up to 101 again. I calmly explained that for the last three days I've been having a fever myself. I explained that the nurses might very well not allow me to visit him if they thought I was sick. I explained that every time I've gone home, I've barely had the energy to feed the dogs much less myself, and that most of my home time is spent sleeping so I don't get sick. I explained that if I ended up in the hospital too, then I sure couldn't be any help to him.

Lastly I explained that unless the doctor said that he was being sick home with hospice care, then he wasn't being sent home to die. Personally, this cancer doc just doesn't know what he's talking about. He talked about sending Jim home a few days ago to continue recovering before starting the chemo - that was the day before Jim got sent to CCU, so obviously this doctor isn't paying attention to the big picture. Jim just isn't well enough to come home yet.

What I didn't say to Jim, was that when I lay in the hospital thinking I was going to die with pneumonia those two times, I was all alone. I didn't have someone to hold my hand. I didn't say that he should suck it up and tough it out. I didn't tell him that I've been missing meds so I wouldn't puke and could be there for him. I didn't tell him how much his words really hurt me. I didn't tell him how absolutely exhausted I am. I didn't tell him about how the dishes and clothes are piling up, as I just don't have the energy or time to do anything when I'm at home for a few hours each day. I didn't talk about driving through the freaking blizzard. I didn't tell him about how I still worry that he'll never get out of the hospital and I'll be left without a partner and without a home.

Tomorrow will be the 14th day that Jim has been in the hospital.
3/17
3pm		 As you can tell, I have been experiencing some anger later. Towards everything. Why in the world do nurses wake you up to give you a sleeping pill? Is it a rule in a hospital to not let anyone sleep longer than 2 hours at a time? (Isn't that torture??) Why do all the old people drive the wrong way in the parking deck? Why is the McDonalds at the hospital the slowest, most ill-run I've ever been in? Why did that bitch cashier not give me back my 4 cents when I gave her 11 dimes to cover the $1.06 cost of a small coke? Why hasn't the city patched any of the freaking pot-holes, no, make that, craters in nearly every road in town? Why has my 10 am mail delivery been coming after 12 noon since the day after the snowstorm?

So I was still a bit perturbed when I went to the hospital this morning. I thought I'd have a change of mood when I arrived and saw Jim up and sitting the recliner. Jim had been doing a fair bit better this morning and had been in the chair for over an hour. I was, and am, quite pleased to see him much more alert, awake and moving about after the last few days. However, not long after I got there, he was ready to go back into the bed, and he promptly feel asleep.  Argh! As glad I am to actually see Jim in a better condition, I really didn't need to be there to watch his sleeping and could have stayed home longer.

Although I know I've been complaining a bit these last two updates, please don't misunderstand. Many of the times that I've been at Jim's bedside was no trouble to me. Many of those times in the last two weeks, I've been there because the situation was truly that dire. I would have been more distressed to have been at home and found out that I was not by his side if he had passed away. However, this has been a very trying time, and I guess I'm just running low myself and running out of ways to juggle all of this.

About the time I was fed up enough to leave this morning, my doctor stopped by to talk with Jim. He wanted to tell us that there had been some concern about Jim's kidney functions that could have been caused by one of the HIV meds. However, the results were already coming back better, so this is an issue that needs to be monitored some; but isn't a problem. Then he gave us some GOOD news - because Jim's numbers (heart, bp, kidney, potassium, etc) were all improving, they were transferring him OUT of CCU. WooHoo! So after getting him settled into his new room (on floor 2 this time), I'm home for the afternoon and I'll probably go back for a few hours this evening.

So you don't worry too much about me, I should let you know that I have been eating better the last two days, I have taken my meds, and I'm neither congested or running a fever today.

I guess what I really want you to take away from today's update, rather than my griping, is although Jim is really still quite sick, two weeks later and with chemo in his future, we are finally seeing a glimmer of recovery for the very first time.

I do have some pictures for you this update.
This lumenaire was sent to Jim from one of the members over at aidsmeds.com, where they've been following my updates too. When the oil is lit, it creates a shadow of a tree. It's really very pleasant and soothing to watch at night. Thanks Kelley!
This is the box of stuff that Jon, Lisa and the kids sent me for my birthday. I haven't read the magazines yet, or played any of the card games, but I've eaten about half the munchies, and been playing a bunch with the "20Q" electronic game.

Thanks Jon, Lisa, Jonathan, Jenny and Jackson!
And I keep beating the game! After answering the questions, it has replied "Poodle", "Rotweiller", "Jack Russell terrier" and "Dalmatian". Maybe it doesn't know about "Cocker Spaniels".
MMM, the birthday cake that DO got me!

Thanks Ohio Mom!
For the first time in my life, I got a birthday card from another country! Another friend from aidsmeds sent me this cute card.

Thanks Emma!

(today in mail, Jim got a card from Emma too!)
3/17
9pm		 thank you so much for the encouraging words, my friends. Part of me understood that Jim didn't really mean what he said (that's why I didn't lash back at him); but part of me was still hurt enough that I had to vent and get it off my chest. Your feedback not only gave me a little more insight about the situation (it's always easier to be objective from the outside ); but also helped ease a little bit of the sting I was feeling. (it also made me think back to those college psych courses I took way back when. LOL)

It's funny but I don't feel "brave", "strong", "wonderful" or any of those other kind words so many people have used about me lately. The lesson I learned from losing Randy has been the only thing that has gotten me through so many hard years and has given me the strength to deal with this crisis: there's only one problem that can't be solved - and that's death. Anything else, and I do mean anything, with some effort, patience and persistence can be made better.

I'm hoping now that the doctor's efforts, my patience, and your persistent thoughts, prayers, and well-wishes are finally turning the tide.

I visited with Jim several hours this evening (I wanted Taco Bell for dinner anyway, and it's halfway between our house and the hospital), now that he's all settled into the new room and another new batch of nurses. (Lord! I'm going to have to bake an even bigger batch of muffins this next time [the batter is ready to bake every ten days] to have enough for the great people in CCU and now Floor Two. LOL) I'm very happy to say that he was still doing better! A physical therapist was in this afternoon, and had him up and walking a few doors down the hall and back. Plus after all those antibiotics had made him quite incontinent while in CCU, it was good to see him be able to get out of the bed and hobble over to the potty chair. (Hey! you take the victories where you can!) With Jim so much more alert now, we finally got around to going over the bills that we had planned to discuss on the day he ended up in CCU.

Even though Jim was scared, frustrated and lashing out at me yesterday, tonight his true colors shone forth. Out of the blue, he apologized for yesterday (and I know that NO ONE has mentioned my gripes to him). Ah, there's that man I love! I didn't make a big deal out of it but explained that I understood why he said what he did out of fear, and that I also appreciated his apology too.

Although I'm very glad to have had some better news to pass along, please don't let us out of your thoughts and prayers just yet, as there still a long road ahead of us - and we still haven't even made it out of the hospital yet.
3/18 Just a short update tonight because I'm really, really exhausted today.

Finally after 7 weeks, Jim hasn't had a fever in over 48 hrs now!  and he's doing as good as he was yesterday. WooHoo!

I spent part of the afternoon with one of the hospital social workers getting stuff together to run the gauntlet of applying for medical aide to cover the expenses and medicines. A bone marrow biopsy is scheduled for 8am, and they decided that Jim's kidney function numbers are in the right range now - so they'll be starting chemo tomorrow.

Goodnight all, I'm heading to bed before I fall asleep in front of my monitors.
3/19 My hiv has never liked mornings much so I wasn't at the hospital yesterday when Jim had the bone marrow biopsy done at 8 am. Since they did the procedure in his room, I would have had to probably sit in the hallway anyways, so it's just as well I wasn't there then.

Jim was pretty drugged up afterwards and zonked-out, so I got to talk to ALL the doctors myself for a change. (it was like a parade of doctors going through Jim's room for about an hour. LOL) The kidney doc said his numbers were continuing to slowly improve, my ID doc talked to me about the current meds Jim is on, and finally the IV nurse told me about the chemo that was going to be started up later in the afternoon.

So while Jim slept off the meds and got a 4hr IV drip prior to the chemo, I got some lunch and some rest. Thank you all for worrying about me too. I've been getting a better grip on things the last couple of days. I have been eating better (even if some people don't think Taco Bell is any good. LOL). I've gotten in some naps, along with 8 hrs of sleep each night. I haven't had a headache or fever in the last two days. And I started taking my meds again. I've still been really tired; but there's nothing I can really do about that but keep trudging along. Maybe in a few more days, I'll be able to bring my honey home and the both of us can just lie around, do nothing, and go nowhere.

I went back to the hospital at the appointed time to be with Jim for his first chemo treatment. Again, I was pleasantly surprised at how nice and helpful another nurse was towards us. The IV nurse explained many things about Jim's port, the chemo treatments, and what Jim might expect to encounter in the next few weeks. It took about half an hour for the nurse to push the meds into Jim. After hanging around another couple of hours to see if Jim would have any effects from the chemo, I called it an early evening and went home to eat and watch Idol.

I fell asleep on the sofa and never saw more than about halfway through Idol. I woke up quickly when the phone rang around 1030 though. Thankfully, Jim was still doing fairly well (no side effects after 6 hrs WooHoo!); he just wanted to let me know that they have moved him to another room again. Now he's up on the 8th Floor where they actually handle the chemo patients. (More chemo is already scheduled for Fri!)

So things are moving forward.
3/20 Another busy morning!

I started this morning feeling a little crappy as usual LOL (and I slept wrong my neck, so it was killing me!) However, I got in touch with Social Security and started that procedure (yesterday the hospital social worker got our welfare paperwork faxed off). I got a phone interview scheduled for Jim for April 2, which was good since I can't even say right now whether he'll be out of the hospital by then or not. Then a quick shower and it was time to head up to the hospital.

When I got to Jim's new hospital room, he wasn't there! They had decided to do an ultrasound on Jim's legs to verify that there weren't any blood clots contributing to the fluid being retained, swelling Jim lower abdomen and legs. Not long after he was returned to his bed, the parade of doctors began again. LOL
More chemo is already scheduled for Fri!

Also a rep from Trillium Family Services (a local service that helped me out when I was hospitalized years ago) showed up - which was good news, as they'll be able to help with the medical expenses, meds, etc. until welfare and SS come through. Jim wasn't really in a good enough condition to deal with all that after the doctors; but as I've been through the process myself so many yrs ago, I took the rep down to the family waiting area and we tackled the paperwork together.

Today's biggest problem though is Jim's mental health. Being on the "outside", I can see that things have begun to turn around (at least, that's what I have to tell myself and try to believe), even if there is still a long way to go; but poor Jim, after 17 days in the hospital, seems to be even more depressed - if such a thing is possible.

Of course, I'm not really "outside" this problem enough to be the help he needs for this issue. Not only don't I have the training to be able to help someone in this condition; but all this directly effects me too - and I'm dealing with my own massive depression because of what the situation is and still could be. (Props again to my ID doctor who was doing rounds today. Every time he visits Jim, the doctor tries to point out the progress that has been made and tries to bolster Jim's spirits.) Also, because I'm having to deal with everything, means that I can't always be "cheerful" enough to help Jim out emotionally. Being realistic and handling this crisis has meant that I've had to "compartmentalize" alot of my own emotions so that I can talk to the docs, sign forms, follow what's happening, and give care to Jim (helping him to the toilet, packing up for room changes, helping keep his hair brushed and him shaved). I'm sure in "business mode", I probably do appear to him to be rather "cold and unfeeling" at times. But I NEVER forget to kiss him when I arrive and leave, and to touch him (hold his hand or rest my hand on his leg) as much as possible.

Since this issue is just too much for me, I'd doing the next best thing - asking YOU, our friends, for help. Of course, many of you all been willing to help out since the very first; but there really hasn't been anything anyone could do. (I posted our address at the first and requested get-well cards, and now there's about a dozen cards traveling with him from room to room. DO has fed me several times and been a good shoulder to cry on a few times - conveniently, her house is near the hospital and not far out of the way on my way home).

Today, now I'm asking y'all to just call and talk, to lend Jim the support he so badly needs. Everyone understands that Jim hasn't wanted visitors (especially as sick and incontinent as he's been) and that between the meds and his illness that's it's a struggle for him to talk much; however, I think some friendly voices will be helpful. If Jim is going to overcome all this, we had to somehow work through the depression. He's got to feel that's there is some hope; he's got to try to start moving more; he's got to talk to people; and at least pretend that he's got a life to lead.

Over the next few days (the Easter weekend), if you could call Jim at 330-280-0680, I would be greatly appreciative. Remember, he may be very tired, so I would suggest that you ask if he's up to talk a bit first. If he doesn't seem to talk much, just keep in mind that I am certain that hearing from you and knowing you care will be helping him.

"Recognizing one's own limitations" (some more of that psych BS LOL I'll have to remember that and use it to impress my doctor when I go back the end of April) isn't always an easy thing to do - especially when you're a Picses who wants to help everyone and fix everything LOL; but I've been sick myself long enough to know that sometimes you just can't handle it all. Already some of you are planning some calls to Jim over the next couple of days, and a few are coming over this weekend to help me get caught up on laundry, dishes, etc. (Some visitors at the house will sure help our poor dogs too as they try to deal with all this. The poor pups have been alone so much!)

Thank you so much for all your help!
3/21 Of course, I should have known that life wouldn't let me get by saying I couldn't do something. During last night's visit, while we watched one of our favorite shows (Smallville), Jim brought up how worried he still was and how tired he was of being sick. I talked about my 4-day and 5-day stay in the hospital, along with Randy's 9-day stay. I told him that I could understand how not only terrifying a stay like that can be; but how soul-crushing tiring that long of a stay can be. I can only imagine how horrible he must feel inside as day 17 turns into day 18.

I explained how a week ago, when talking when our friends, I had guessed that it would probably be at least another week before he was released. Although those plans had been delayed by the 4-day stay in CCU, seeing the improvements already, I could see some light in the tunnel and could now hope that he might be released before the end of another week. We have a diagnosis now; the hiv has been treated for a week and a half; already one chemo treatment was done and another one would be done soon. Although things were still rough, things are moving forward and not backwards anymore. Results of the treatment might take some time but each day of treatment would be taking him further away from sickness or death.

I can't tell you that Jim's attitude miraculously changed last night; but after our talk and several calls from friends last night and this morning (bless them all! I put out the word and they came thru!), he didn't seem to be feeling as lost and adrift as he had been earlier in the day. Several more of our friends have called me and made arrangements for continuing the support calls throughout the weekend.

I was back at the hospital this morning and am glad to report that this is day four that Jim has not had a fever. The bone marrow biopsy results had finally come back and there's NO cancer cells in his marrow. Although he's still not eating very much, he has been eating some every day now. Jim was very sleepy while I was by his bedside but he did tell me that another chemo treatment won't be done again for 2-3 weeks.

Although I was there for nearly five hours, it wasn't until I was about to leave that he told me the most distressing news from his doctors this morning - he probably won't be released for another couple of weeks! Obviously he didn't want to talk about that, so I didn't question him about the reasons why; but by the time I got to the elevators, I couldn't help but cry. I know that his condition has gotten better during this last week; but another couple of weeks is going to seem like years!

Two days ago, we had another snowfall of almost an inch; but thankfully the recent rainy weather took care of that and had finally gotten rid of the almost all of the remaining snow from that big storm a few weeks ago when our hospital adventure began. Now, four to six inches of snow is predicted to fall tonight, so I might have an "interesting" drive in again on Sat. morning. I'll tell you, Winter can't be over soon enough for me. Maybe when Spring finally does make it to Ohio, I'll finally be able to bring my honey back home.
3/22 WooHoo! Finally a day all around that was good (well, as good as can be under the current conditions. )

After yesterday in which Jim was "kinda out of it" for most of the day, today was so much better. He was awake, alert, and more talkative than he's been in nearly two weeks when I arrived in the morning. He had eaten breakfast, and felt good enough to have the physical therapist walk him around the room a little and move him to the chair to sit up for a while. We even went over the bills and got checks written up before he started to tire out. At lunch (around 1:30), his pain meds kicked in and he zonked out, so I headed home.

At home this afternoon, Angie and Ritchie came over to help me out at the house. While Ritchie vacuumed the downstairs (and he did a better job than I do!), his mom handled up my sinful of dishes. I finally got to put away the clean clothes so I quit living like a vagabond out of the laundry baskets - even though I still have my travel bag all packed with the essentials of living at the hospital. Then I got to spend some time (on a very nice sunny, but chilly day; after the 1/4 inch of snow melted from this morning) in the big backyard playing with the dogz. While Angie was mopping in the kitchen to finish up and about the time I was getting tired, Ritchie came out and played ball with the dogz some too. It was an excellent, if not restful, afternoon.

Back at the hospital (with some more Taco Bell. LOL Hey! Jim has always been a finicky eater; so since it's just me getting food, I getting all the stuff he won't eat. ) Jim was up and alert again. WooHoo! He felt good enough (and was getting another blood transfusion due to low platelets from the chemo) that we got his hair washed up, teeth brushed, and him generally spruced up. They wouldn't let me shave him again (well, to catch the spots I missed the other day) so he wasn't accidentally nicked and bled to death or something horrible. (So, okay, the scruffy look is hot, and we'll just leave him unshaved a day or two. ) After that, we both stayed awake and watched the Matrix before calling it a night.

Hopefully, today's transfusion will help tomorrow be another good day as we have made plans for DO and our good friend Mike P to come up for a short visit with Jim. I think Jim is a little fearful of seeing anyone; but I think getting over this hurdle will help him move forward. The phone calls have already been helping.

I'm just so very excited still that today (day 19) was finally the first day without any more new bad stuff happening. It's about time for some good to be happening. Your thoughts and prayers are finally kicking in!
Week Four:
3/23 omigosh! Two good days in a row! I'm going to get spoiled. LOL

Jim was up and out of the bed by the time I arrived this morning. Things were going well (kidney numbers and sodium levels are back to normal and the edema is starting to go down and his legs are nearly normal looking again). So well in fact that the docs have changed their opinion and are saying that he "might" be able to get released by the end of this week. WooHoo!

Things got a little touch-n-go for a while though. After all his exertions this morning, Jim suddenly got very tired about the time Joyce and Mike were supposed to come up and visit. "Not to worry, my love", I told Jim. "They'll understand if we postpone their visit for a few hours. It was still early in the morning and they weren't really ready to visit yet anyway." Jim zonked out and after a 45-min power nap, suddenly woke and wanted to know when they were arriving. LOL They were just on their way at that time, and while we waited, several more of our friends called to wish us a Hoppy Easter and see how Jim was doing.

All the phone calls lately, and the visit from Joyce and Mike today, really have done a world of wonder for Jim's psyche in the last few days. Being more alert and able to tackle this problem has helped him alot too.

After his pain meds kicked in, I left for the afternoon and went over to my Ohio mom's for an Easter feast. I was soooo stuffed, and soooo sleepy afterwards; but I still got two loners and four euchres to make my team the winners! Tucking a big bowl of banana pudding (with lots of nilla wafers!) and a slice of pecan pie into my hospital survival bag, I had something to munch on while Jim and I watched "Shrek" back at the hospital this evening. During the movie, we had a conversation that got a little deep for a while (facing up to your own mortality as you lie dying in a hospital will do that to you. been there, done that myself a couple of times); but it sure felt good having him take an active part in worrying about what OUR future is going to hold.

"Our future." God, what a wonderful thought to have after having spent these last few weeks worried to death about what "my future" was going to be if I was going to be alone and widowed for a second time.

I'm hoping that I can keep reporting better news this week, and bring these updates to a conclusion by bringing Jim home soon!
3/24 On Day #21, Jim must be feeling better because he's starting to complain. LOL The food is bad, the nurses are slow and loud, they won't let him sleep, and he's tired of being in a hospital bed. That's good to hear cause those are the the reasons for him to push it with the physical therapist so he can get the hell outta there.

They removed the foley cath today and had Jim up and sitting, and then up and walking the hallway. For the second day a row Jim ate a little something for all three meals of the day. WooHoo! Every step and every bite of food moves us closer to getting Jim back home.

I'm pleased as punch to tell you all that we've has three good days in a row now.
3/25 You know, Jim's stay in the hospital has been making me totally re-evaluate how I think about my own health. I used to think my life had been miserable with those two hospitalizations, and for how sick I have felt through the last 15 yrs from the meds and this virus. Now I find myself in the unbelievable position of actually being the "well" partner (because lymphoma trumps puking over meds any day, in my book). Walking through the hospital halls, seeing those people in the beds, hearing their stories (25 days in; 45 days in; chemo, radiation and the resulting side effects) has really made me re-think just how "bad" things have been for me. That isn't to say that I still don't wish I had been lucky enough to have the "pill-a-day, chronic, manageable" version of this disease, rather than losing a partner before we could even get 10 yrs together, having this aids diagnosis and dealing with multiple harsh drug regimens; but I could have been soo much sicker. In that perspective, I have to stay that I've been pretty lucky so far to have only suffered as little as I have.

I'm hoping that, in the long run, my "new and improved" outlook about my situation transfers to Jim some, giving him the positive attitude he'll need to get through this crisis.

Today wasn't bad day; but it wasn't quite a good day either. Jim is having a new problem. He had been awake most of last night with pain in his lower chest (in the general area of one of those masses). They ran an ultrasound this morning and doped him up pretty good. Later in the day he was doing much better; but by bedtime he was hurting again. Hopefully this is a minor fluke and won't derail his release "by the end of the week" as the doctors were saying for the second day in a row.

On the emotional/mental side of things, Jim has been doing much better in the last few days. He's been alert and awake much more than his first two weeks in the hospital. Plus he's beginning to talk about what needs to be done. It's going to be very frustrating and very hard for him to learn to think in very short-term goals (what should he do? well today he needs to try to eat at every meal, do all the physical therapy they suggest and "try" to get some sleep to aide in the healing. what should he do next week? Well, we'll worry about what to do next week when next week gets here. The only worry we have for today is to tackle today's problems).

I thought we were going to have another problem; but that worked out nicely in the end. After my morning trip to the hospital, I checked the mailbox and got a letter about Jim's appt with welfare. Postmarked yesterday, the appt. was scheduled for TODAY at 230 - 30 minutes after the letter had finally gotten delivered. Some more of your thoughts and prayers of support for us much have come though, as his case worker turned out to be MY case worker too. I explained that he was still in the hospital and we made arrangements for the case worker to handle BOTH Jim's initial application and my yearly renewal at the same appointment. We've rescheduled for Apr 3 (the day after his SS phone interview), in the hopes that Jim will be out of the hospital by then. If he isn't, then we're both scheduled at my appt. time Apr 17th - and he better be out of the hospital by then!
3/26 Well, I almost got to report that this was a GREAT day; but things didn't work out, so it's just a GOOD day instead.

When I called Jim this morning, I got the great news that he was going to be released from the hospital! However, after the physical therapist walked him down the long hall and had him take a few stairs, it was all just a bit too much for him. Luckily he didn't throw up in the stairwell like he thought he might do; but instead of walking back, Jim got a free wheelchair ride. That little incident (plus another onslaught of that pain he's been having lately) put the brakes on going home today, so that they could work with him a little bit more before making the big escape perhaps tomorrow. The occupational therapist came by and had Jim sitting up for while. She gave him several nifty gadgets and showed him how to use them to aide himself when he gets home. I watched while he got his socks on and off and, for the first time in over two weeks, pulled on some pants.

Back home, just in case the hospital doesn't come through, I borrowed a potty-chair and a walker to help once Jim is home. I vacuumed, shampooed the carpets and rearranged the furniture to turn the living room (with the king-size fold-out sofa bed) into our temporary living/sleeping quarters while Jim recuperates. (I well remember that it took me a month of recovering just from pneumonia to finally go back up the stairs to my own bedroom at my old house). If need be, I've made arrangements with some friends to help rearrange the spare room downstairs (by the bathroom) from our card-playing room back into a bedroom, in a week or two after we see how things are going. I also put a call into the oncologist to schedule an appt., and called the ASO to see what we need to do to get Jim's HIV meds until he gets approved for a medical card.

Whew! I'm tired from handling all that stuff; but I did have that nervous energy (from hoping to bring him home today) to work off anyway. All-in-all, I feel much better now about bringing Jim home tomorrow having gotten all that stuff handled. I know Jim needs to stay in the hospital if he's still having enough problems; but I'm really excited about having him back home. I found myself crying again, for the first time in several days, just thinking about how happy I'll be to have him at home. (gosh! I'm just a mess, aren't I? LOL) Now Jim just needs to decide what he wants for dinner his first night back in case I need to make a run to the grocery store.

Hoping that 24 (days) is the magic number!
3/27 Today was another good day! Jim and the doctors decided this morning to wait until Fri to try for a release again. So today, the therapists have been in hard-and-heavy. Although I can tell that he's frustrated, tired, and in pain, my Jim has been putting up a pretty brave face and doing all the exercising. I can hear the change in his voice as he talks about how he will do the activities so he can go home 2morrow.

Making my inner Pisces happy , I ended up in the hallway and the elevator with the physical therapist. Jim hadn't been too nice to her over the past few days. I apologized and told her I could understand how tough her job must be. I made sure that she understood how much "I" appreciated her work with Jim. (I just haven't had the time to bake up more muffins; but I'm going to have to make sure she gets some of them too.)

I finally got a call back from the oncologist scheduling a temporary appt. for 2morrow at 1:45. I explained that we weren't certain Jim would be released in time, and may have to reschedule for the first of the week. I am concerned that Jim won't feel up to an appt that soon anyway; though when I called him, he said he felt much better and believed he could manage the trip to the doctor. I'll think we'll see how things go first 2morrow - a couple more days of recovery over the weekend would probably be more beneficial first. (that'll also give me more time to figure out how we're going for pay for the doc visit)

I'm still eating and sleeping enough (though it sure doesn't feel it!). I'm back to 95% adherent to my meds; but was frustrated to puke today because of them. Sigh. But at least I waited long enough to get sick that the meds stayed down. Oh wait! I'm supposed to have changed my attitude, so just ignore that last gripe. Of course, I'm still freaking, in the back of my head, about what the heck is going to be happening through the next few days and up to Pooltag this summer; but at least I'll be better prepared for whatever does come about.
3/28 I'm trying not to be too upset; but today sure didn't go the way we had hoped. It was definitely an emotional rollercoaster day. Just think, Jim and I love going to ride the coasters each summer; but I swear this is one ride I wish I could get off of.

Of course, my cell phone has been with my constantly through this crisis "just in case"; and my alarm was set for 8:30 as it has been for the last few weeks, so I can struggle to get myself together and get to the hospital by 10:00.

This morning my phone woke me up an hour early. But it was NOT the call I have been dreading to receive; instead it was Jim, sounding better than he has in three weeks, asking me to come in earlier this morning, as his release was scheduled for 10am. WOOHOO!

However, by 830, Jim had called back telling me to not get excited. BooHoo Some of his blood work still was low and they decided he shouldn't go home yet. ARGH! Since I was up and dressed, I headed on to the hospital. When I got there I found out that not only were his white blood cells very, very low, but his hemoglobin was dangerously low - so low that the doctors were worried about heart failure! So the doctors decided on another blood transfusion. With a lot of patients on the floor right now (and all very sick), and with Jim's port being clogged, it wasn't until late afternoon that they finally starting pumping the fresh blood into him.

Jim's roommate, an 86 yr old man with colon cancer who has been in the hospital about 5 more days than Jim, was having a bad day too, and was also getting blood. So there was a lot of activity going on in their room today - which is always a little un-nerving.

Because Jim is now at high risk of acquiring other germs, he's been moved back to a private room again. I thought that was cool - he'll be able to sleep better, and across from the nurses station they'll be able to keep a better eye on him; but Jim was under the impression that he was being moved into "solitary" to die. I had to have a serious heart-to-heart and explain that although things are quite dire right now, death is not that imminent. (Well, it still really is; but none of us can think that way or we'll never win this battle)

I should also mention that he's built up a tolerance to the pain med (dilaudid) and the 4 mg is now having no effect.

I spent nearly the whole day at the hospital with Jim going through the ups and downs. At dinner, I took a couple of hrs. to run home and feed myself and the doggies. When I returned, he was doing better physically and mentally, and was actually ready to just get some sleep. Back at home again, I have a chore to do. I dragged the blankets and pillows down this morning for the fold out bed when I thought he was coming home. now I've got to lug it all back upstairs so I can sleep in my own bed. LOL

Up and down, up and down, down and up. Whee! What a horrible rollercoaster ride. I really want to get off now.
3/29 Today we were just riding along a straight part of the rollercoaster. The transfusion and injections of [insert some sort of medicinal name here] seemed to be helping, as Jim's numbers are slowly beginning to climb back up. The nurse explained to us that this situation is known as the "nadir". Seven to 15 days after chemo, you reach this low spot when the chemo has not only done a number on the cancer; but also on your blood!

Hopefully when Monday rolls around, and after 28 days in the hospital, Jim might be able to come home. Looking forward to that I've decided to go ahead and rearrange in the downstairs rooms to set up Jim's old bed. I explained how it wasn't to shut him off; but to have a quiet place, away from the spaniels, that he can use to recover in and then nap in, when he's not feeling good from the chemo in the next few months. He explained how he wasn't happy at all that I'm making all sorts of decisions like that; but that he also understood that I was taking care of him and he would have to put up with most things being out of his control for a while. (As a LEO, not having control is the worst thing in the world. LOL) Poor Jim keeps asking what "he" can do to make things get better; but like trying to raise your tcells, it's something that just happens or doesn't. There's not much to do except hope the meds do the trick.

By the way, the older gentleman back in Jim's old room still isn't doing too well either. His wife and I compared notes and situations for a while in the hallway, while they did a portable x-ray on him and Jim and the therapist walked partway down the hall and back. Unfortunately, that image, of Jim tottering in the hallway pushing a walker, sent me back into yet another hospital bathroom crying.
3/30 I think we're going through corkscrews on the rollercoaster today.

This Morning
Being a Sunday, they weren't about to release Jim today. LOL His blood counts, while still climbing slowly, still aren't good enough for him to be sent home yet anyway. When Jim isn't feeling any pain, or not in la-la land, he seems to be doing okay. Today, he AND I took a stroll down the hall and back. He was a little wobbly a few times; but got a kick outta waving to the older couple back in the old room.

The doctors said (once again) that perhaps he might get out tomorrow. I think I'll wait until hearing about the blood results in the morning before I get too excited this time. ;)

This Afternoon
We didn't get to set up a bed last night; so I was hoping to get that done this evening. Too keyed-up to rest, I starting cleaning up the two rooms and getting the bed parts together. I sure wish I had brought the single bed over from my old house; but as it hadn't been used in 7 yrs, and we really had no place for it over here at Jim's house, I left it behind. Silly me for thinking that any of this might be easy. LOL As I started getting bed pieces together I realized I have a king frame with no slats or box springs, and a single frame with a base but no mattress. I called nearly everyone I know; but no one has an extra single mattress, so the bed plans are on hold until I figure out what to do.

This Evening
I must say too that I was actually a little leery about bringing Jim home tomorrow (and I think he's worried about the prospect too). My fears proved true tonight. When I went back early this evening, Jim was in a lot of pain and he had also been running a temp (100-101) for nearly the last 18 hrs. Only an hr after the last pain meds (dilaudid), he was curled up in the fetal position, crying because he was hurting so badly. Because they hadn't given him a full dose of meds, they were able to hit him with a little more, and that seemed to help. Although it pushed him back into la-la land where it took me an hour to convince him that he hadn't eaten dinner, and to get him to finally eat some (a bowl of frosted flakes). I still didn't think he was doing so well after another half hr. When the nurse came to take vitals after the pain meds, I knew something was up. Since we're right outside the nurses station, I found out that several patients, including Jim, weren't doing very well and a few more nurses were being called in to assist. Within 15 minutes, a nurse was assigned to Jim and retaking his pulse/ox. Within another 10 mins, they hooked Jim up to the O2 and called his doctor about this turn of events. I stayed another hr, until he finally started to drift to sleep, before leaving.

Needless to say, I needed some comfort myself by this point. Stopping by my Ohio mom's, I got fresh onion rings, and a shoulder to cry on. I try to confine my crying to my house when it's just me and the dogs or in hospital bathrooms (LOL); but today was just too much. I know saying this will make you all worried; but after all these weeks, I'm really at my wit's end. I'm sure after some sleep, I'll be able to "butch it up" again tomorrow and muddle through; but tonight I think I'm losing my hope.

Moms are practical people though, so after some crying, I also got a solution to the bed problem - an air mattress! So 2morrow, I need to stop by Wal-Mart again. I had to buy an electric shaver the other day. Jim's blood counts are too low to allow him to use a razor and possibly get cut. I've still got a little cash on me, and my money will be coming in this week; but, on top of everything else, I foresee bad financial woes in the near future.

I have realized that in two ways this IS all different from what happened with Randy. First, Jim is not Randy. Oh Randy was moody too; but Jim is a much moodier guy, so he has a different attitude towards being sick than Randy did. I catch myself running interference with nurses, lest they think he's the hateful guy that he sounds like sometimes. And two, with Randy, I knew where things were going, and really had found some peace in it all; but this is much different. Really, either outcome is still very probable. It seems for every two steps forward, he takes two back - and that's getting him nowhere fast.

I've been thinking back to my little 3-legged cocker spaniel (Gabby) that I had to put to sleep back in December. I know I didn't do her wrong; but because of Jim, I didn't stick by my principles; otherwise I would have put her to sleep a week before, so she didn't have any pain at all. I know I can't, nor am I suggesting that we "pull the plug" on Jim; but I sure hope I'm not putting him through all this misery, if he won't survive much longer. Ah! There's the deja vu again, as I appeal to a Higher Power to help me know what to do to make the right decisions.
3/31 Rather than "torture" you again with a big long post, suffice it to say, that today wasn't too bad. Jim's condition did continue to improve and all the docs are in agreement that it looks like Jim will be released tomorrow. I know I heard that before, but each time, we're closer to it really happening.

The part I won't bore you with was how we had another little "tiff" this evening. (I don't "argue" with my partners. I did that enough with my father and don't accept it in my life as an adult.) I read back through your previous replies when we had another brief "tiff" and your thoughts encouraged me again. Although Jim has been acting out-of-character quite a bit over the last three days (between the meds, the pain, the worries and sleep deprivation, is it any wonder?), he did show his true self, and called me late tonight to apologize for being upset with me. So you'll know, I didn't bottle up all my feelings; I chatted with a couple of my moms who, though they couldn't solve my problem, were definitely supportive.

Well, with a little luck , just maybe I'll get Jim out of the hospital before we hit the thirty day mark (tomorrow at 1pm officially ends day # 29). Keep thinking those happy thoughts and sending out those prayers for us.
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