I had to go back and read my last posting to see where I left off. Time passes so much faster being home .... even if my only "event" during the day is a walk.
But, that's also about where my energy level and ability to focus has been. Last week was a bit of a rough one. Fatigue kicked in Mon./Tues. to a level I'd never experienced! I mean, I was prepped for being tired, but .... getting out of bed at 9:00, taking an hour nap by 10:30, forcing myself to shower and eat lunch, then laying down again for another 45 min., going for a 30 min. walk (feels great!), then crash ..... counting the minutes till bedtime, being in bed by 7:00. I didn't expect that much. Thursday's check up was another good one (napping the car ride down and back). Counts are good, everything on track for where it should be. Just as I thought I was getting to only "tired" stage Friday, I got hit hard with the head cold Griffin was getting over. And because of all the meds I'm on and carefulness of masking anything greater, my box of kleenex was my only defense. No tylenol, no cold medicines. Finally started turning the corner yesterday, physically and mentally.
I was able to cover myself up with my heavy duty, build for crowds mask, and attend Sam's winter concert last night, and will go to Tucker's tonight. The beauty of living so close to the school - slip in, slip out .... but able to see them.
This Thursday's visit at DHMH is a full boat. A couple of monthly/bi-monthly meds, check up with docs, and our first bone marrow biopsy. It will take about 7-10days to get the results, but it will show the % of engraftment from Doug's cells to mine. It's quite amazing!
As always ..... you all uplift me with your emails, blog responses, waves and hellos ..... out walking on Sunday and saying hellos to a few familiar faces along the way was the best pick me up to my otherwise feeling losy that day. I appreciate all the support more than you know!
lots of love - Pam

time passes faster when you're home

Saturday already? Well how'd that happen?
Well my activities are not a whole lot different from the hospital (sit in the sun in a favorite chair and either read, knit, eat, or just stare). But...... I get to move around!!!!! Up and down stairs, room to room, walk my neighborhoods again instead of hallways, and most of all, be with the boys!!!!!! I store up and wait for them to get home, play some games with them, then peter out. The fevers (very low grade by the time I got home 99.8 - 100 as highest) have been gone since Tues p.m. That's great! One less thing for me to get parinoid about. It's tricky though, the first few days I would run to the thermometer as I would be freezing with chills!! (98.6) normal - I'm just REALLY COLD, ALL the time. I have to plan my walk around the sun being out and the temp being as close to 30.
Some more consistant nausea (but no vomiting) has begun, diareah (but hard to tell if it's GVHD or a mixture of the 9 pills I take twice a day). No signs of rashes, and on Thurs.'s visits my counts looked good. I'm right on track they say.
As fabulous as it is being home, WE"RE ALL adjusting! The kids are thrilled, but little things are coming back out that they've been holding together for a month. Here's Sam's the other night "don't we have that white dressing?" "This one Sam (ceasar)?" " NO, THE OTHER ONE! (now totally in tears and yelling) " Sam do you mean ranch?" "YES!!!!!" "I think we're out" "BUT WE"VE BEEN OUT FOR ONE MONTH!!!!!"
I can't seem to stop holding them each chance I get (followed with uncontrolable tears) and then there's those uncontrolable tears out of the blue that sometimes can't stop either (that was most of Tues.and Wed.) As great as it is to be home, I often feel like a stranger here. My hands are tied and limited to what I can do, even if I felt like doing any of them. I need to learn to actually get in bed and turn the light out before the point I'm crying each night at the thought of transitioning and getting ready for bed. We'll figure it out in time - day by day with alot of patience!! And one good day could be followed by two not so good, for no reason either. We're aware of that. It is a long few months (to a year) ahead of us again. But we stick together and we power through with so much love and faith, and support!
Love to all - Pam

Release!

So last night at 6pm, on day 19, Pam was released. We are home and having a late breakfast, which is great medicine after 15 days in the hospital. It was quite a day with lots of docs having lots of conversations about the darn fever issue.
Pam is still running a low grade fever from time to time, but after the infectious disease team reviewed her last 2 CT scans, they decided it would be ok to go home with some conditions.
We have to monitor her temp. regularly, we have to journal everything that could possibly be a sign of infection: temp, nausea, bowels, appetite, skin, you name it. But we are home!
We go back down on Thurs. morning for our first post appointment.
If you want to come see Pam, you need to do the following: 1. Not have a cold, or have been near any sickness, 2. Wash hands as soon as you enter our house, 3. Keep visits brief (5-10 min.) (You all know that Pam will not end the visit, but she is very tired and although would like to see people in small doses, it does need to stay brief for a few weeks).
It is great to be home, but also a bit nerve racking as we are out of the safe cocoon. We have officially moved on to phase 2, which believe it or not, is supposed to be more difficult than the last few weeks. Keep moving forward, day by day!!!

Every 12 hours is different!

It is Sunday night, and Pam is still here at DHMC. It has been a very frustrating few days for her. Her counts have risen dramatically and been right on track. The problem is that she is continuing to run a fever, not high (100.8 to 101), but too high for release. They have been trying to figure out what is causing this because they cannot release her until it is gone.

On Thursday, Pam was moved out of the special care unit to make room for another patient. Her counts are high enough so that was ok, she would have actually been sent home except she has the fevers. They decided to pull her central line on Friday because of suspicion that the fever could be coming from a possible skin infection around that. This of course means that all IV fluids now had to go through IV lines (which is less comfortable).

They placed a line on Friday afternoon and needed to pull it by Saturday morning because the anitbiotic had infiltrated the vein and seeped into surrounding tissue. After 5 shots to control the seepage they got the swelling down. So they placed 2 new lines on the other arm and those were both pulled today because of swelling and burning again. Pam veins are little, thin and pretty much shot from all the chemo she has received in the last year.

So the IV team sent a person up who tried 3 places and couldn't get a line to go, they sent a second person up who managed to get one line in back on the original arm. This line is being used for Magnesium only, and the antibiotics are being given orally. They took a CT scan this afternoon to rule out any chest infection. Sound confusing? Yes. Sound painful? Yes. Hence the tears and frustrations from Pam, who 3 days ago thought she was headed home.

Soooooo, we wait until tomorrow and see what it brings.....
In the meantime....Pam has started losing her hair by the handful. She is sure that this means it is time to leave the hospital, as the same thing happened in February and May, and she wants this mess left here for their cleaning crew. Which brings me to this....

THANK YOU to all the angels who came and cleaned our house in anticipation for our return soon! Pam also had a couple of great visits to raise her spirits during these tough times.

So it's legit......

so .... get a load of this, on Monday, Day 12, we saw a little teeny tiny peek of an increase in my ANC. Meehan keeps reminding me usually between day 15-18, this would be unusual, but could be real. We'll know tomorrow. I reminded him I'm unusual :)

day 12 day 13 day 14
mon. tues today(wed)
hbg (red cell) 8.7 9.0 9.4
plt (platelet) 125 168 232
wbc (white cell) .5 .7 1.4!
anc (absolute neutrafil) 100 150 450!! (500 is the magic discharge #)

Holy cow!!!! tripled!!! So they took me off IV antibiotics at noon, and switched to pills. Next step is 24 hrs no fever, and discharge. Went off for my afternoon walk, had a visitor I met from Nunnink's office beginning tomorrow, then ........ started feeling pretty tired and a wicked headache. Sure enough by 6:00, I had a fever, hooked back up to IVs and went through the routine of blood and urine cultures, and chest xrays. Cultures have to wait 24 hrs. as well as the beginning of no fevers again. So, the rumor from the nurses of discharge tomorrow, definately won't happen. So we'll hope for this weekend still.

In any case....I'll be home soon.
Lots of love -Pam

day 12

those little tiny white cells (WBC) and more importantly, absolute neutrafils (ANC), they're the real infection fighters, have started to peek their heads up a bit. it's a bit early, usually between days 15-18 is when it happens, "it's a little unusual but could be real" says dr. Meehan, tomorrow's count will answer that. But my answer to Dr. Meehan was, "well, I'm a little unusual, ha,ha) "yes you are" was his response.

I started a new antibiotic yesterday (IV every 12hrs) that targets skin infections. When they put in my central line, there's two incisions, the bottom where the line is and the top where the tube is fed into the vein. That spot has never closed up well and finally by Sunday, it had turned to an infection. And without an immune system to fight it.....more antibiotics.

so......a follow up to the O+ transfusion. I thought that seemed pretty early for my blood to change, I remembered 5 months or so. And, that is the case. It's more like changing around two and takes up to a year. When I had the boys, I had to get a shot of rogaim, because I had negative blood and they all had positive blood. And it prevented antibodies from growing in them from my blood against theirs. Anyways ...... it's like that but, Rogaim wasn't used, and it was ok, and ..... they know what they're doing and why. How's that for an explanation? :)

Troy was able to come down Friday night for the night while my folks were with the boys. He returned Sat. p.m. to take Tuck to Stowe first thing in the a.m. for a snowboard competion. My folks were able to go watch and Griff brought his board to the mountain for the first time and had a great time riding with Dada and riding on the gondola. Sam had a blast at Sugarbush with his buddy Soren. Finally back to school Monday and some routine. Tuck has his first basketball game and will certainly have the biggest cheering section of his brothers and dad. Troy will come back on Wed. for a couple of days, while my folks head back to our house. And then we'll see what the weekend brings.

But while he's been away, I've had great visits from my folks, Beth Hahr (and a little bag filled with friends :), and "my Janet" my special friend who is my chemo nurse in Unger's office and her husband David.

I'll post again in another day or two ....
Love to all - Pam

DHMH is boring compared to Bethel.....

So far so good still ....
Today was a blood transfusion, which I've been expecting to happen. My counts came back (7.8) - the norm for women (12.0-15.0). Well, sure enough, Doug's blood is in! My former blood type was O-, but not today... as the bag came up, it's now O+, just like Doug's. Isn't that amazing?!!

The real news comes from the homefront however. Troy left here Wed. and picked up the boys in Bethel to head home for rest, rejuvenation, and ...... strep tests. Because somehow the Chase crew (all four families) like to share everything (not just Doug and I). Five days together, four dogs, eight adults, eleven kids, and TEN CASES OF STREP by Thursday. Everyone got tested, adults and kids, symptoms or none - and that's what we got. Dr. Meehan gave Troy the OK though to come visit tonight. Then he'll head back for the weekend to be at lots of the kids outings.
Love the responses, I'll update in 2 days again.
Pam

update with a giggle

Hello all and greetings from down south here in sunny Aruba .... uhhh , I mean sunny (and snowy) DHMH.

I HIGHLY recommend coming to the towers. I mean this place has miles and miles of corridors... I mean trails for hiking. The service is top notch - not an hour goes by without "How are you?, Can I get you anything? Are you peeing enough?" and nothing like that extra personal touch of checking my vitals every four hours .... even through the night!! You don't get that from most places. And the perks ..... I just finished with a foot massage, back was last week, what will I need next? Don't get me started with the scenery ..... seriously. I have a first floor window that overlooks drop off? Need I say more? And lastly, and really, most importantly ..... the cuisine!!!! Can I just say ..... VARIETY. Come on!!!! Who knew food without fresh vegetables, fruit, spices .... could taste so good.

Seriously .... things are going VERY well so far. I get an IV antibiotic twice a day for the low grade neutropenic fever I've been running (very common), and fluids and electrolytes daily as needed. So most of the time I'm not even hooked up to my dancing partner IV pole. Nothing has happened to my mouth yet, so I've been eating everything. And, not that I have a competitive edge.... but I think I might have just broken the record for volume of pee voided (hospital word) in my three days here as most in a three week stay --- feeling pretty proud of that. So we're on day 7 (cell infusion on Dec.26th is considered day 0), and counts start to make their appearance again around days15 - 18. That glass is just about half full!

I'll probably have blood and platelet transfusions in the next day or two, that should help lift these tired eyes abit. But, I've been trying to stay pretty active. Up and around the POD often during the day, and I have two really good walking routes including stairs that are about 1/2 mi. and 1 mi. VERY HIGHLY encouraged, keeps the lungs going strong and ward off pnemonia.

Keep the faith
Love you all - Pam