Tonight we start

Tonight I get the beginnings of my chemo for tomorrow. They will give me a large dose of prednisone at midnight after they take blood. It has to be given 12 hours before they start the chemo and again 30 minutes prior to chemo. The scheduled time to start the infusion is noon and it should take about 2-4 hours to complete it. My platelets are low today meaning that my immune system is already going down. Should be down significantly by this time tomorrow. Marc and I got a surprise visit from Amy and Sam today and we spent the afternoon visiting with them. It was a nice visit and took my mind off of what's to come.

Another delay?

On Tuesday my research nurse, Sally, told me that my Geiger number would not be down to 2 until 8pm on Wednesday (the day I was scheduled to get my stem cells back). She also told me that the type of transplant I'm getting (auto) is not done at night therefore I would get my cells back on Thursday. Since then I have asked the doctor and several nurses if we were going to set back the day to start chemo to Sunday instead of Saturday so that I would not have two days rest between the chemo and the transplant. They have told me repeatedly that this is not a big deal and the chemo would take place tomorrow and Monday as planned with my cells being returned on Thursday. So mentally, I've geared up to get this thing moving tomorrow - then my nurse for today informs me at about 6pm that the orders have been changed and the chemo won't start until Sunday! I'm frustrated that it took that long for them to decide this and for them to tell me. I'm bored as can be and tired of sitting around - that's not me! I go for walks now that I am free but the halls are getting pretty old. Marc came and I got to hug him and I could have done that forever. Deb came to visit and we enjoyed a lengthy chat. It was a good time and made the afternoon disappear. I want to get this thing going!!!

New Surroundings

It was a quick swift move from isolation to my new "normal" room at about 9am today. All I was able to take with me was my laptop, glasses, and the clothes that I wore in to the hospital which had been kept in a closed closet. Feels odd to be back in the normal world without plastic surroundings, plastic rustling on the phone when I'm on it, and plastic on the floor. The good side is I don't have to squirt iodine in the toilet each time I use it any more. It's kind of weird but it took me a while to actually touch things in my room after being in isolation. But now I get a real hospital tray with real plates and real silverware. No more cardboard trays, Chinet plates and plastic utensils for me! AND...I can close my door if I choose to. On the medical side of things, they had some initial problems taking blood from one of my lines but with a little work, out it came! I didn't want to know so I didn't ask what they would do if it didn't work. After they checked me out today they found my tongue is starting to show signs of the mucositis starting - oh boy here it comes. Still on schedule to start the chemo on Saturday.

Bonus post - New Phone & Room Numbers

Just got moved and settled into my new room. Still working out the details in here but here's the info:
Room 7234 Phone #206-598-7620

Last night in isolation

Had a new different nurse today that did things a little differently than the rest of them. She came two hours later than the others have, had me check my vitals and said she would be right back then returned two hours later. When she brought my medications they were all still in their packages (everyone else brings them in a small cup ready to go). This would not be a normal issue, but I've been in here for a week now and my garbage cans are quite full (and not smelling great). All in all, she came to my door a total of three times for the entire day. Good thing I didn't need anything. On the up side, I had two great visits today from my special brother-in-laws - John and Mark. It was great to see them both and we each had a good time. Somehow, I must have slipped through the cracks today and they did not come to take my Geiger reading. I asked about it late afternoon and was told that by their calculations it didn't need to be done because I'd be ready. The numbers are pretty important to me and I would have liked to have known where they were at. Seven is the number I need to get out of isolation, but two is the number I need to get to (or below) to get my stem cells back. I am scheduled to get out tomorrow but they are full right now and waiting for a room on this floor for me. May not be first thing in the morning but I will be sure to post my new phone number and room number as soon as it's all figured out.

Numbers are shifting

Slept well last night even with all the comings and goings next door. Today was the day the dressing on my Hickman needed to be changed and I, of course, was not allowed to do it. My nurse had me go up to the shield and she stood on the other side and changed it from there. That was the closest I've been to anyone in almost a week. Shortly after that the best thing happened...the Geiger counter lady appeared. My number is now down to 12.8! BUT...I got a call about an hour later and they told me I would be down to 7 at 8am on Thursday!!! So that's the day I will be out of isolation and in a normal room and back around people. The not so great news was that I would not reach the number 2 until about 8pm on Wednesday, March 4th. Unfortunately, I can't have my stem cells back until I'm at 2 and they won't give me the infusion at night so I won't get my stem cells until Thursday, the 5th. Naturally I won't just be sitting idly waiting for the stem cells. First I have to get two mega doses of Chemo with a day of rest between each dose. That should start this Saturday. That's when I will probably feel the worst of it all. Marc mentioned to my doctor at SCCA that since I tolerated the R-CHOP chemo treatment pretty well, could we assume I will do all right with this one as well? Her response was the R-CHOP was like getting hit by a truck. These drugs will be like getting hit by a train.
Oh Boy. Marc and Jen came to visit tonight and as always it was great to see them. I am so ready to be close to them again.

Number seven is still a bit away

Since I posted pictures yesterday, I forgot to give an update. The nausea seems to be a slight ongoing problem, but somewhat kept under control with medication. Today was the first day since Friday that I kept everything in. Other than that I feel good but, of course, bored. I applied my MacIver skills and worked on the bike some more and can now ride it with little difficulty. Diana came to visit yesterday and brought fresh reading material. Marc came and spent several hours with me as well. Kind of tough to visit when he has to sit at least 10 feet from my door and I'm 10 feet away from the door on the inside. I'm sleeping pretty good - if only they would stop interrupting me for my vital signs every 4 hours. The garbage is starting to accumulate but they've graciously given me more garbage bags to tie off the full ones. I have a new neighbor who I think is getting his transplant tomorrow. LOTS of people in and out of his room throughout the day and night. They didn't take my Geiger reading over the weekend, so today it was down to 18.6 - still quite a way to 7.

Pictures of UW isolation room

The lead shield that blocks my doorway. The actual door never closes

My bed with a great view you can't because of the sun

General Equipment in room plus my sink

Bathroom with glowing toilet

If you look closely you will see that most everything is covered in plastic and blue duct tape. This includes the faucets, toilet, all shelving, all tables and the floor.

Saturday in the hospital

Slept much better last night without the IV hooked up. They still had to wake me at 4:00 am to have me take my vital signs. I've been a little concerned because my blood pressure has been running high for me. The nurses said it could be because of the radiation or because of the volumes of fluid they've been pumping into me. Thankfully the numbers have gone down today and are almost back to my normal. Marc came and stayed with me for several hours and gave me a update on our bathroom work. It's kind of tough because this is the type of stuff we do and I can't be there to help. John and Connie came by for their second visit with more things to keep me occupied. That was really nice. I'm meeting a lot of nice people who are in here for transplants. They have already received their transplants and are now doing their exercise by walking laps around the halls. Some are from here, many are from throughout the country.

Kind of better today

The day actually went by pretty quickly. I had quite a few calls and talked with some friends on the computer. Did my "laps" and generally feel pretty good. Highlight of the day was when they disconnected me from my IV. Now I can move freely about my room. Low point of the day was when I got nauseous when breakfast came. Luckily they have good drugs to make it go away quickly. My neighbor got to move to a regular room this afternoon. I was envious. Amazing what a joy it will be when it's me! Not for a bit though...my Geiger reading today was down to 36 which still seems like an eternity from my magic number of 7. I hear they'll take a couple more readings and by Tuesday they should be able to tell me when I get to move out.

I'm Bored (already)

There's only so much you can do in a hospital room. Yes, I got the bike but it's useless. Can't adjust the length so I would have to sit at the edge of the seat to reach the pedals. And trying to pedal is a joke - it's so rough like it doesn't have a belt (hurkin & jerkin). That's not happening and it can't be removed from my room as it's contaminated. So for exercise, I pace back and forth across my room like a caged lion! Takes me 6 steps to cross the room. I do my "laps" several times a day for 30 - 45 minutes. It's a good thing I'm at the end of the hall or someone walking by would think I'm nuts. I'm not using the VCR but they do have their own movie channel. Unfortunately, the schedule they gave me is old and they don't have a current one. This would not be a problem if the movies started on the hour or so, but they start at various times. The food is actually pretty good and I have a five page menu to choose from with resturant quality. I didn't get much sleep last night because my pump alarm kept going off plus they had to come and take my vital signs every few hours. Not to mention the small bed and lack of a warm body by my side. My Geiger counter number went down to 47 and I had hoped it would be lower. They have to take the reading at least once more before they can determine how long I have to be in here. So far I'm feeling good but they said any side effects wouldn't appear for a few days. Keeping our fingers crossed!

I'm Glowing

It was really tough saying goodbye to Jen and the animals early this morning. Still trying to comprehend that I won't be home for at least 2 months. Finally got the show on the road and now it's a countdown until I return with a healthy immune system. After all the routine questions and pre-meds, they started infusing the Bexxar at about 11:30am. Didn't feel a thing. They have me hooked with an IV now, but it's just to keep fluids flowing through me. The IV should only be for a couple days. They say I may have some nausea but usually IF that happens, it doesn't come until a couple days after infusion. So far I feel fine. Shelly came with her Geiger counter and measured my radioactive level to determine my baseline. She gave me a yardstick and told me to stand at the end of it. The reading she got was 60 milligrams per hour at 1 meter. I'm told that it will go down quickly for the first couple of days then it slows down. I can't get out of isolation until my number is down to 7. I took some pictures of my room and as soon as I figure it out, I'll post them. I can't have my cell phone in here but I do have a direct line which is 206-598-7614. If we're still on schedule, I'm down to 228 hours until I'm out of isolation! Hope I get some sleep tonight without Marc by my side. (PS---I got the bike in my room!)

Day before my life comes to a screeching pause

Kind of a joyous/sad day since it was my last visit to SCCA for probably at least 5 weeks. Since I've been down there most days since December 31st, it will be different not greeting the parking attendant (and paying $4), getting screened for cold symptoms, not leaving my blood samples, riding the elevator up and down several times a day and challenging the scheduler. My team has changed several times with different doctors and nurses, but Kerry (my physicians assistant) has remained constant throughout. He's pretty good and can match my quirky nature. His rotation will change the beginning of March and he will join me again at UW. Had my HAMA test, chest xray and last clinic visit and since I haven't received a update phone call, I assume my test was negative for the mouse antibody and I now just have to show up at 8am tomorrow at UW for my admittance. It's all pretty weird to try to put your life together but also on hold for at least 2 months. I look around my house and it's hard to believe I won't be here for a while. I have stayed awake till the wee hours for the past couple of nights just taking in the surroundings of my bedroom and listening to Marc sleep. After 28 years, I can't imagine being without him for this length of time and sleeping alone. I'm down to 252 hours from right now until they have me scheduled for release from isolation.

Last Gamma Scan

Had the last of my gamma scans today. I have passed all my tests and been cleared to proceed with the radiation and transplant. The only possible hurdle I have left is to pass the HAMA blood test next week. This is a screening to see if I have a mouse antibody living in my system. I've had this test done a couple of weeks ago and it was negative, but they need to re-check to see if it's changed and make sure I don't test positive. Evidentially it has happened on a rare occassion that you can acquire this antibody as a result of the test dose of radiation I received last week. It's not very common so hopefully it won't become an issue. If it does, things will come to a stop and we'll have to determine another path for me to go down in place of this type of radiation therapy. We'll deal with that next week. For the meantime, I have a four day weekend with no medical visits!!

Thought we were done with the scheduling issues

Yet another gamma scan at UW to start off the day. Finished within a half hour today then it was off to SCCA for my clinic visit which was an hour later (at 10:30). We took our time and the scenic route and still arrived a half hour early. Marc made some calls and did some work from the car while we waited to enter the parking garage. Made our way to the 6th floor (transplant center) and was promptly handed a new schedule which had me hanging around there for a blood draw at 12:45pm. Needless to say this didn't make me too happy since my clinic visit would be over by 11:00am. I felt this was a good time to inform them that I only had a week left until I entered the hospital and my freedom would be extremely limited for the next several months. I had no intention of wasting almost two hours waiting around to draw my blood. My appointment was immediately changed to 11:15 :) The clinic visit went well and all they really did was change my dressing and go over all the same basic questions. Now we're in the countdown to my admit date next Wednesday. I think they will not miss me at SCCA.

More gamma scans

Woke up with yet more snow on the ground today. Luckily it wasn't on the roads so again we trekked up to UWMC for more gamma scans. They take four scans which takes about 40 minutes including the time it takes to place the machine in position. Since they never come and get you at your appointment time, this caused us to be slightly over an hour in the parking garage. Silly me - I would think that with the amount of money they collect for all these medical procedures and doctor visits, they might have pity on the finances of those who have to continuously have endless visits and have free parking. Obviously they don't share my opinion. SCCA is a deal as their parking maxes out at $4.00 for any time over two hours. UW is $7.00 for two hours or more. What a rip...

Faint Glow from Maple Valley

Last night I told Marc I didn't want to go tomorrow. After having the day off and enjoying some time with friends, I resented having to give up another day to battle this beast. But my better half took over and we trudged out before dawn for my 8am appointment - so much for trying to sleep in. Arrived at 8 am to receive my test dose of the radioactive antibody and a tracer element. Since it went through my Hickman, I didn't feel a thing. Usually there are no side effects from this and I haven't experienced any. The radioactive stuff was dispensed automatically through a unit which slowly depressed the syringe into my tube. I'd never seen anything like this before. After we finished there a patient in isolation agreed to let me visit see the isolation room where I will be. I didn't go in, just looked from the hallway. It looked just like the pictures I'd seen and about as big (not very) as I imagined. The man who was in there was being released from the room today so he was quite chipper! He said it wasn't too bad but he was definitely ready to rejoin the regular population. Next stop for me was down to radiation and more gamma scans. I don't mind these as they are completely painless and I just have to lie there. Today the tech turned down the lights and put on a little music - very relaxing!

Going to the U

Today was the first day at UW Medical Center. We went to Nuclear Medicine for a gamma scan. It was nothing too traumatic. They had me lie down on the "table" (like a CT scan slab) then lowered this piece of equipment that was about 16" square and flat down to within inches from my face. All I had to do was lie still for each test which lasted between 2 - 5 minutes each. The first test was done without solution to get my baseline. The following tests were done with different dyes to determine how much solution went into my vital organs (liver, kidney, heart and spleen - if I had one). This will determine how much of the radioactive antibody to give me without doing "too much" damage to the rest of me! If nothing comes up, I should have tomorrow off. Friday I get the actual test dose of the radiation. Today I started taking iodine drops which is supposed to protect my thyroid. Bizarre stuff - I take 5 drops in a small (1/4") amount of juice followed by water. It goes down so fast it really doesn't taste bad, but if I use the same glass for the water it leaves a very salty taste. They also warned me that this stuff stains - bad - so I have to be very careful. This said, they told me that this "should" protect it during the treatment but most likely it will burn out and I will have to take a pill everyday for the rest of my life to keep it working. Two weeks from today will be the day I go into the hospital for the party to begin - IF all goes as planned!

So Much For a Day Off....

Thought I was going to be SCCA free today - no such luck. As I got out of bed today we noticed some fresh blood around the Hickman entry site. Marc called down to SCCA and they said to get in immediately (as a precaution). Turns out when the nurse was observing yesterday she tried to clean a spot she thought was a clot at the entry site. Since it was disturbed and she didn't completely remove it, it became aggitated and bled under the scab. Thankfully no big deal but something that needed to be looked at. It's all good.

Another Lesson

Today was a recap on how to care for my Hickman port. Since we were a little distracted during the first lesson, I thought we should go over it again. Difference this time is that I asked if Marc could change the dressing under the nurses observation. With steady hands, he worked like a pro. If he got a few changes under his belt at home, he would have been great at it. As it turns out, because of it's location, the nurse has recommended that it be changed by the nurses to ensure it is completely sealed. We both agreed (although he did a fine job!). Off tomorrow!!