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Thread: Life-Threatening Illness & Reality Check

  1. #76
    Cyburbian Emeritus Bear Up North's avatar
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    Tick tick tick tick.....

    Bear heading for University of Michigan Cancer Center on Thursday (10-28) for beginning of multiple infusions of white blood cell building drugs and installation via surgery of another access port for all the plumbing they will use to kill my bone marrow.

    Bear returning to same on Monday (11-1) for beginning of "harvesting" of stem cells. I will drive up every day until they count out enough for my transplant.

    (Visions of creepy men in stained lab coats, counting little microscopic cells, giggling, with beakers in the background, steaming.)

    Looking like I will be admited on or about 11-15-04. Yum.

    Please Pass The Bunsen Bear
    Occupy Cyburbia!

  2. #77
    Look at the bright side, Bear. The plumbing can save a lot of time at the bar. Just plug in. I tried to do this with my shunt but nobody would cooperate!!! Keep smiling, Bear, I'm with you. Also to MZ and any others in dire straits, you are all in my prayers. Thanks for being there.

  3. #78
    Cyburbian Emeritus Bear Up North's avatar
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    The Bear, home in the den, not feeling so chipper today. Yesterday, Katie and I were at The University of Michigan's Cancer Center. At 8:00 AM they gave me my first injection of Leukine. I will continue to give myself daily injections of this drug, as the countdown continues for the BMSCT.

    At 10:00 AM I went into surgery for a triple-lumen Neostar (device). This device has infusion ports and will provide an EXIT for mainstream blood (filled with stem cells) and an ENTRANCE for that same blood, minus the "harvested" stem cells.
    A machine similar to a blood transfusion machine does the harvest process.

    Those stem cells are collected and frozen.....saved for the actual transplant, now scheduled in Mid-November. The harvest begins ("shine on harvest moon" ) on Monday, 10-1-04. They will have me return to Ann Arbor on a daily basis until they have collected enough.

    I still dont' have a digital camera. I would love to show you the Neostar. I hate it, because it's dangling from my body and I have to be very-very careful. The plumbing from this Neostar goes directly to the big central veins in the center of the Bear's body.

    The three (3) plastic lines that snake out of the central line (coming from the chest) look like the VCR/DVD lines and caps on the back of your TV. Katie asked if she could plug me in to try to get better reception.

    The visiting nurse this morning told us that I would probably have this puppy dangling from my body for a considerable number of months after the BMSCT.
    Oh, goody.

    It will make a good halloween costume.

    Fuzzy Reception Bear
    Occupy Cyburbia!

  4. #79
    Cyburbian
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    Bear,

    May your reception improve, and all go well. As long as you have a sense of humor--that seems like 1/2 the battle. I've known a few people who have gone through pretty much what you are now, and come out raring to go, and who are still doing well several years later.
    MZ--best wishes and thoughts for your sister.
    I don't dream. I plan.

  5. #80
    Cyburbian Michele Zone's avatar
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    My sister is on Leukine and she and I have talked about some of the side effects and what she does to treat them. However, she is also on several other drugs, so I have trouble remembering which drug has which side effect. If I recall correctly, the Leukine helps promote white blood cell production? But also, um, gives you terrible heartburn/stomach problems? If so, I know she treats that with fennel tea (among other things).

    I took care of my sister after her first mastectomy. My kids were kind of horrified to be near her with all the drainage tubes dangling from her until she began making joking references to The Borg (I don't remember now if she claimed she was a Borg or wasn't one). Perhaps you should dress up as a Borg for Halloween.

  6. #81
    Cyburbian Emeritus Bear Up North's avatar
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    Well, BMSCT fans, here's the latest.....

    Third trip in three (3) days to Ann Arbor to the U of M Cancer Center. Today they plugged me in and started what resembled a four (4) hour blood transfusion. The blood was pumped out of me, went into a machine that had a centrifuge as part of it's internal workings, and pumped back into me.

    The centrifuge spins the blood, separating the white cells, the plasma, and the stem cells. The stem cells are "harvested" from the "pile" of stem cells that was created.

    I have to go back tomorrow (Tuesday, 11-2) for more harvesting.

    This process and the Leukine that I have been self-injecting the last few days has left me a bit tired.

    Odd coincidence: One (1) of the other patients, also scheduled for a mid-November stem cell transplant, is from Manistique, MI. This is one (1) of my favorite Upper Peninsula places and is located just a few miles east of the eastern suburbs of my fictional drawn city, De Noc.

    No comment about the U.P. is complete without mentioning the local favorite watering holes: Buckshots, in downtown Manistique or Jack Pine Bar, located in the woods about twenty (20) miles north of town.

    McCormick Bear
    Occupy Cyburbia!

  7. #82
    Cyburbian Plus
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    Just got the instructional mailing about having an Upper Endoscopy.
    Appearently it is treated just like same day surgery and everything that goes with it.

    Q. Anybody ever experience this procedure ?
    Oddball
    Why don't you knock it off with them negative waves?
    Why don't you dig how beautiful it is out here?
    Why don't you say something righteous and hopeful for a change?
    From Kelly's Heroes (1970)


    Are you sure you're not hurt ?
    No. Just some parts wake up faster than others.
    Broke parts take a little longer, though.
    From Electric Horseman (1979)

  8. #83
    Cyburbian Michele Zone's avatar
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    Quote Originally posted by Bear Up North
    This process and the Leukine that I have been self-injecting the last few days has left me a bit tired.
    My sister says she always sleeps a good 10 hours when she gets her weekly Leukine injection. And since it ups your production of certain cells, hey, it is a little like a new born baby growing fast and sleeping a lot.

    I think that being tired is one of the worst parts of having a serious illness because it means that even though you don't feel too bad to do stuff, you cannot come up with the energy to do stuff. It is 5:13pm and I am still waiting for my energy to rise enough to shower and go run a couple of errands...hopefully, before too many stores close, or I will be unable to get some things done, even with the compromises I plan to make.

  9. #84
    Cyburbian Emeritus Bear Up North's avatar
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    I should change the name of this thread to the "More Bad News Thread". I just finished a couple days hooked up to the blood-transfusion-like machine, attempting to harvest stem cells. It didn't work.

    The amount of stem cells that they were able to harvest was way too low. So, I get to hear the saying again:

    "Mr. Bear, you are an unusual case."

    Evidently, in rare cases there are problems with the body's ability to push stem cells into the bloodstream. Now they are back to talking about giving me the dreaded Neupragen injections along with more Leukine. As said before, I'm very allergic to Neulasta (a drug in the same family as Neupragen).

    If that doesn't work, they would go into my bone marrow "the old fashioned" way. They would insert a needle into my hip bone and suck out a bunch of bone marrow so they could grab those pesky stem cells from the marrow.

    Anybody got any used stem cells laying around? They would be packaged in a maize and blue outer package with the inner items wrapped in black and gold. The part number on the bar code affixed to the carton would be:

    14dathumb-big10champs-old96-1948

    Please forward to:

    Bear
    69 Libertarian Elitist Way
    De Noc, Northern Michigan

    Stemless Bear
    Occupy Cyburbia!

  10. #85
    Cyburbian Emeritus Bear Up North's avatar
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    Quote Originally posted by JNA
    Just got the instructional mailing about having an Upper Endoscopy.
    Appearently it is treated just like same day surgery and everything that goes with it.

    Q. Anybody ever experience this procedure ?
    JNA......best of luck. Good place for info on any medical stuff is the internet.

    Doc Bear
    Occupy Cyburbia!

  11. #86
    Cyburbian ecofem's avatar
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    Hey Bear:

    I'm sorry to hear of all that you and your family have been going through. I have been in a similar place. Kinda makes this election stress seem kinda silly, no?

    My mom went through a series of both Neupragen and Neulasta shots. She had pretty good results with both, but the Neupragen gave her some difficulty with joint pain. I hope you are able to tolerate it well.

    Not too terribly much I can say except stay strong, maintain a sense of humor if possible (and you seem to be doing very well)... I'll send some warm thoughts and Florida sunshine your way.

  12. #87
    Cyburbian Plus Zoning Goddess's avatar
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    Bear, is this something where bone marrow donors could be of help?

  13. #88
    Cyburbian Emeritus Bear Up North's avatar
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    Quote Originally posted by Zoning Goddess
    Bear, is this something where bone marrow donors could be of help?
    Not yet. We will be trying to gather my stem cells in the two (2) manners described above. Or, I could rob a bone marrow stem cell bank.

    Bonnie & Bear
    Occupy Cyburbia!

  14. #89
    Cyburbian Cardinal's avatar
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    The doctors have likely taken samples from you, so you know how fun it is to have a needle inserted into your hip bone. The ride home from the hospital is awful. From there, you can lie on your stomach for a few days. Hopefully it won't come to that.
    Anyone want to adopt a dog?

  15. #90
    Cyburbian Emeritus Bear Up North's avatar
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    This news bulletin in from the KFWB News Center, bringing you all the news all the time, especially when you need to grin and BEAR it......

    Friday, 11-5-04
    Spent most of the day at the Cancer Center. They started by pricking my skin in four (4) places, testing two (2) drugs that have been either used by me with a severe allergic reaction (Neulasta) or planned to be used by me (Neuprigina) as part of the BMSCT.....and adding control pricks (no this is not a politcal thread) in the form of saline and histamines. Had NO bad reaction.

    Next step.....went to under the skin needle pricks with Neuprigina. Had NO bad reaction.

    Next step.....went to 10% watered-down Neuprigina, given as a shot. Had NO bad reaction.

    Final step.....went with 100% dose of Neuprigina. They kept me in a room for a few hours and monitored me. Had NO bad reaction.

    This is GREAT news for this Bear. Even though the drug that I had the severe reaction to is related to the Neuprigina that is vital to my BMSCT.....they appear to be far apart enough chemically that I have NO bad reaction.

    Next week.....back to the slab at U of M Cancer Center for more attempts at bone marrow stem cell harvesting.

    Signing off because the wife and I are heading for Loma Linda's to celebrate.

    WAAAAAAAAAAAAHHHHHOOOOOOOOOOOOOOOOOOOOOO Bear
    Occupy Cyburbia!

  16. #91
    Cyburbian Michele Zone's avatar
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    Party Time!!!

  17. #92
    Cyburbian yaff's avatar
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    Signing off because the wife and I are heading for Loma Linda's to celebrate.

    WAAAAAAAAAAAAHHHHHOOOOOOOOOOOOOOOOOOOOOO Bear[/QUOTE]

    - Bear

    So glad to hear some positive news this time. Thanks for the updates. My thoughts have been with you and I continue to try to send "healthy" vibes. I really admire the courage, humor and grace that you have demonstrated here. You have shown me how I would like to face life's challenges. We are all wishing you a successful treatment and recovery.

  18. #93
    Cyburbian Emeritus Bear Up North's avatar
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    Update # 3,452,986.....

    Arrived University of Michigan Cancer Center early this morning. They gave me two (2) Neupagen shots. No bad reactions. Good.

    Drove home (about 75 miles). Kinda tired. Still planning on going back to work tomorrow morning.

    Katie cruised over to the Flower Hospital (Sylvania, suburb of Toledo) pharmacy to pick up the rest of the vials of Neupagen. Two (2) shots in the morning and two (2) shots in the evening, for about a week.

    They start the bone marrow stem cell harvesting again......on Monday.

    My dad used to take two (2) shots in the morning and more shots in the afternoon. He wasn't taking Neupagen, though.

    BTW....the twelve (12) vials of Neupagen cost $2500. Wow !!!!!

    Thank (insert name here) for health insurance.

    Looking at admission date of the day before Thanksgiving. "Here, Turkey, have a piece of BMSCT. You want white meat or dark meat?"

    Bear In the Cavity With the Giblets
    Occupy Cyburbia!

  19. #94
    Cyburbian Emeritus Bear Up North's avatar
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    Well, sports fans, the second batch of "harvesting" of stem cells didn;t work any better than the first batch. The first, a few weeks ago, was with preliminary drug of Luekine. The second, this week, was with Neupagen.

    Now what?

    This means that they have to try something else. The docs are getting together on Thursday (11-18) to decide. It looks like one (1) more try at a drug that will push the stem cells into the blood stream. The results from Monday and Tuesday of this week were .2 and .2......and they need 10.0.

    OTOH.....when I was laying on the bed, hooked-up to the BMSCT harvet machine, they brought in a young girl to show her the process. She was a real cutie, about eight (8) years old, asking questions. She asked me if it hurt. Of course it doesn't so I told her "no" and showed her the Neostar 3-Line device that is surgically attached to my chest. I don't know if she had one (1) attached to her.
    I had been laying there feeling all sorry for myself. Her bright eyes and sense of "this is an adventure that will make me well" made me feel like a real cad. Tears welled-up in my eyes when she left and all day today I have felt sad, for her. Such a cutie.

    Bear
    Occupy Cyburbia!

  20. #95
    Cyburbian Plus PlannerGirl's avatar
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    Ugh. I wish I had some wise words to comfort or inspire but I dont, all I have are my prayers for your health (and that of the little girl) and support if there is anything I can do.
    "They who can give up essential liberty to obtain a little temporary safety, deserve neither liberty nor safety." Ben Franklin

    Remember this motto to live by: "Life should NOT be a journey to the grave with the intention of arriving safely in an attractive well preserved body, but rather to skid in sideways, chocolate in one hand, martini in the other, body thoroughly used up, totally worn out and screaming 'WOO- HOO what a ride!'"

  21. #96
    I don't know what to say, Bear. I just wish you the all best.

    Maybe a polar swim would get the stem cells into the bloodstream? I know it would shiver me to the bone

    Gedunker with rattling teeth.
    On pitching to Stan Musial:
    "Once he timed your fastball, your infielders were in jeopardy."
    Warren Spahn

  22. #97
    Cyburbian yaff's avatar
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    Bear,

    I have already asked Santa (and any other powers out there that may be able to help) for some stem cells for you. Adding my prayers to the pile for you.

  23. #98
    Cyburbian Emeritus Bear Up North's avatar
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    Well, this Bear took some time off, to surround the regular time off for the 4-day weekend (Thanksgiving). One (1) more day off and then return to work for a few days.

    On next Friday this Bear will again go under the knife.....ouch, ouch, owwww......as my oncology doctor will be doing a bi-lateral bone marrow biopsy. They want to look at my bone marrow and see if they can figure out why it doesn't produce stem cells "normally" and they want to look to see the status of my Hodgkins.

    I still have the Neostar 3-hose device hanging from my chest, plumbed into the central vein. It's a bit of a pain in the rump because I have to be very careful I don't bump it and when I shower I have to cover it with plastic wrap that is taped to my body. The showers are pitiful as I stretch under the water stream trying to wash my hair and not get the Neostar wet. Dampness is very bad for the hole going into my chest.

    My hair is back, although very short. Folks who don't know that I have been doing this chemotherapy bit for nearly two (2) years probably think I'm some sort of an idiot.....first he's got hair, then he's bald, then he's hairy again, dork of Swanton.

    All of this, of course, means that the planned bone marrow stem cell transplant that was supposed to take place the day before Thanksgiving is now on hold.

    To top the weekend off, we just got back from the funeral home. The mother of one (1) of Katie's fellow-workers died of cancer on Friday. People at the funeral home were asking, in a concerned way, about how I was dealing with everything. I responded that I was "fine" and I'am.

    Nice to have a caring Cyburbian community to unload on, sometimes.

    Thanx!

    Bear
    Occupy Cyburbia!

  24. #99
    NIMBY asshatterer Plus Richmond Jake's avatar
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    BUN no one is more is my thougths than you, my sons, and my mom....get well soon. 'Cause I wanna kick your ass in basketball.

  25. #100
    Cyburbian Plus Zoning Goddess's avatar
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    Geez, Bear, we're here for you, and keeping our fingers crossed. Good luck on Friday.

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