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H. Humbert
SFN Die Hard
USA
4574 Posts |
 Posted - 03/23/2010 : 14:27:39
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Up until now I haven’t shared much about what’s been going on in my personal life, partly because it's difficult to open up and partly because I wanted to keep SFN and the other websites I frequent purely as a place to escape the travails of daily life. But I figured it was about time I shared my story.
My actual name is Jason, and back in ’07 I was a bachelor living in Fredericksburg, VA. I met a girl online named Emily who was funny, intelligent, and an atheist. It wasn’t long before I moved in with her in her apartment in Queens, NY. It worked out. We fell in love. In the summer of ’08 I proposed and she accepted. We were to be married on October 17th, 2009.
However, around the time I proposed, Emily began to experience acute pains in her neck, arms and shoulders. After initially being diagnosed as having degenerative arthritis, Emily continued to worsen. She experienced night sweats and intolerable itching—an allergic reaction to the Vicodin she was prescribed, we were told. She also began to have severe pain in her chest, which was diagnosed as Costochondritis, a type of inflammation. After receiving a steroid injection directly into her chest which did no good but caused excruciating pain, Emily sought another medical opinion. In June of 2009 Emily and I finally learned that she had a tumor in her chest that was pressing on her spine. Further tests revealed that Emily had stage 4 Hodgkin’s lymphoma, which accounted for the itching, night sweats, and weight loss. We didn’t notice the weight loss because she was on a diet in anticipation of our wedding. She had lived in pain and misery misdiagnosed for over a year.
At the beginning of July, Emily and I moved to upstate New York to live with her mother as Emily began treatment. Emily looked terrible. The uncontrollable itching had left her body a wreck of scabs and scars. She was put on a 6 month long chemo regimen and eventually began to come back from the brink. We both had high hopes that all would be well, despite some life-threatening complications including two blood clots and several brief hospitalizations. We were told that most Hodgkin’s patients respond very well to treatment. 80% of those afflicted achieve cure. Unfortunately, we found ourselves in the 20% group who aren’t so lucky. A preliminary PET scan halfway through her treatment was encouraging. It showed “minimal” cancer activity, and the hope was that the tumors would be completely gone by the end of the chemotherapy. She was scheduled to receive radiation treatment as the final stage in her cure. However, as we neared winter, the pain in her chest and the secondary symptoms she had experienced (itching, night sweats) began to return. Another PET scan in December confirmed our worst fears. A portion of her cancer was resistant to the chemo drugs and had begun to re-grow during the second half of her treatment. The tumors in her chest were back.
So, we proceeded to the next course of action, which is far more aggressive. It also has a diminished success rate. The new plan consists of another shorter, but more intense, round of chemotherapy with a new “cocktail” of drugs, followed by a single massive dose administration of chemo that will leave her hospitalized for about a month. This mega-dose of chemo will basically fry her bone marrow and leave her without an immune system. During her stay in hospital, she will have to live in a “clean room,” that is, a super-sterilized environment. All visitors must wear a face mask, gown, and protective booties in order to avoid exposing Emily to any outside bacteria or viruses. Even things which would be benign to someone with a normal immune system could be lethal for her. Emily’s immune system will then be reconstituted by means of a bone marrow stem cell transplant. Essentially, bone marrow stem cells are collected from her blood before the procedure, then are gradually reintroduced back into her bloodstream while she recovers in hospital. This “reboots” her immune system and allows her to recover while (hopefully) the cancer remains eliminated.
Emily has now received all three of the preliminary chemotherapy treatments. Rather than a single treatment every two weeks as before, she received the chemo drugs over the course of three days once every three weeks. The powerful chemo drugs also dangerously lower her white blood cell count after each session, leaving her immune system open to attack from contagion, though not so low as when she’ll go in the for the transplant. So far Emily has avoided any serious complications, although we've had to deal with a stream of minor ones, including several brief hospitalizations. This new chemo regime has caused her to lose all of her hair, which was one side effect we were spared the last time. The treatment has also left her sterile and put her into premature menopause. However, Emily did opt to have one of her ovaries removed and frozen. An experimental procedure offers the hope that one day we may still have children together.
After learning that the cancer was back and before beginning this new treatment, Emily and I decided to get married. It wasn’t the large affair we had originally planned, but I love her more than anything and don’t think either of us wanted to wait any longer. On January 26th, 2010, Emily and I married in a quiet ceremony at the local town hall. The following day she had the operation to remove her ovary, and the day following that she began this new chemotherapy regime. She has already had her bone marrow stem cells collected for the transplant. They were able to recover enough cells for three transplants in a single session, which is a good sign that her bone marrow is robust and healthy.
Emily has been incredibly brave and strong through this entire ordeal.
In a few days Emily will undergo another PET scan to determine the progression of her disease. If the scan shows the tumors have responded to this new treatment and shrunk, she will then have the transplant at the beginning of April. We are both still trying to remain positive that all will go well.
I’d like to thank everyone for the concern and support they’ve shown both of us so far. Family and friends have reached out to us in innumerable ways and we couldn’t get through this without them. I hate coming here with my hand out but right now neither of us are working and we have been relying on the generosity of others to get by. Medical bills are mounting, and some things, such as the ovarian surgery, are not covered by insurance at all.
For those interested, some websites have been set up to keep people abreast of Emily's progress, including a Facebook page and a donations page to help defray medical costs. Our thanks goes out to everyone. Please keep Emily in your thoughts.
-Jason.
http://www.friendsofemily.org/
http://littlelebowskiurbanachievers.wordpress.com/
http://www.facebook.com/pages/Friends-of-Jason-Emily/262147039162?v=wall
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"A man is his own easiest dupe, for what he wishes to be true he generally believes to be true." --Demosthenes
"The first principle is that you must not fool yourself - and you are the easiest person to fool." --Richard P. Feynman
"Face facts with dignity." --found inside a fortune cookie |
Edited by - H. Humbert on 03/23/2010 15:25:20
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Dave W.
Info Junkie
USA
26022 Posts |
Posted - 03/23/2010 : 14:55:57 [Permalink]
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H., it's great to hear you're married, now. Sucks rocks to hear about the disease.
I'm hoping for the best for you an Emily. |
- Dave W. (Private Msg, EMail)
Evidently, I rock!
Why not question something for a change?
Visit Dave's Psoriasis Info, too. |
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Kil
Evil Skeptic
USA
13477 Posts |
Posted - 03/23/2010 : 15:11:48 [Permalink]
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| Hey Humbert. All the best from me as well. I've facebooked your page around a bit. Hope you don't mind... |
Uncertainty may make you uncomfortable. Certainty makes you ridiculous.
Why not question something for a change?
Genetic Literacy Project |
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Hawks
SFN Regular
Canada
1383 Posts |
Posted - 03/23/2010 : 16:21:01 [Permalink]
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That's more than tough. Hope all goes well.
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METHINKS IT IS LIKE A WEASEL
It's a small, off-duty czechoslovakian traffic warden! |
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Dude
SFN Die Hard
USA
6891 Posts |
Posted - 03/23/2010 : 17:07:47 [Permalink]
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That's pretty fucking terrible H.H. Very sorry to hear you guys have to deal with something like that.
Past arguments aside, you have my hopes for some positive outcomes to this ordeal.
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Ignorance is preferable to error; and he is less remote from the truth who believes nothing, than he who believes what is wrong.
-- Thomas Jefferson
"god :: the last refuge of a man with no answers and no argument." - G. Carlin
Hope, n.
The handmaiden of desperation; the opiate of despair; the illegible signpost on the road to perdition. ~~ da filth |
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filthy
SFN Die Hard
USA
14408 Posts |
Posted - 03/23/2010 : 17:13:16 [Permalink]
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Hang in, brother, and pass my warmest best wishes on to Emily. She sounds like a really cool and tough lady.
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"What luck for rulers that men do not think." -- Adolf Hitler (1889 - 1945)
"If only we could impeach on the basis of criminal stupidity, 90% of the Rethuglicans and half of the Democrats would be thrown out of office." ~~ P.Z. Myres
"The default position of human nature is to punch the other guy in the face and take his stuff." ~~ Dude
Brother Boot Knife of Warm Humanitarianism,
and Crypto-Communist! 
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Gorgo
SFN Die Hard
USA
5310 Posts |
Posted - 03/23/2010 : 17:13:19 [Permalink]
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| We're all behind you. |
I know the rent is in arrears
The dog has not been fed in years
It's even worse than it appears
But it's alright-
Jerry Garcia
Robert Hunter
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HalfMooner
Dingaling
Philippines
15831 Posts |
Posted - 03/23/2010 : 18:45:35 [Permalink]
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| All the best to Emily and yourself. Hodgkin's is one of the best-understood of all cancers, and has been treated successfully for more than half a century. That it got to Stage 4 in Emily seems a serious failure of diagnosis. Had my own case of Hodgkin's in 1984 gotten to that stage, I would not have had the treatments now available (I was at Stage 3, and got the MOPP regimen). Hang in there, keep fighting! |
“Biology is just physics that has begun to smell bad.” —HalfMooner
Here's a link to Moonscape News, and one to its Archive. |
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R.Wreck
SFN Regular
USA
1191 Posts |
Posted - 03/23/2010 : 18:51:44 [Permalink]
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| Our thoughts are with you Jason. I can't say that I know what you are going through, and I can't imagine how difficult this is for both of you and your families. I can only hope that things turn out for the best. Stay strong. The love and support you have given your wife speak volumes. |
The foundation of morality is to . . . give up pretending to believe that for which there is no evidence, and repeating unintelligible propositions about things beyond the possibliities of knowledge.
T. H. Huxley
The Cattle Prod of Enlightened Compassion
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astropin
SFN Regular
USA
970 Posts |
Posted - 03/24/2010 : 09:05:01 [Permalink]
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| Congratulations on the wedding. Hope the treatments work as planned. |
I would rather face a cold reality than delude myself with comforting fantasies.
You are free to believe what you want to believe and I am free to ridicule you for it.
Atheism:
The result of an unbiased and rational search for the truth.
Infinitus est numerus stultorum |
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Dr. Mabuse
Septic Fiend
Sweden
9688 Posts |
Posted - 03/24/2010 : 10:21:52 [Permalink]
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| My thoughts are with you and Emily. |
Dr. Mabuse - "When the going gets tough, the tough get Duct-tape..."
Dr. Mabuse whisper.mp3
"Equivocation is not just a job, for a creationist it's a way of life..." Dr. Mabuse
Support American Troops in Iraq:
Send them unarmed civilians for target practice..
Collateralmurder. |
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emsby
Skeptic Friend
76 Posts |
Posted - 08/20/2010 : 10:50:46 [Permalink]
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Hey everyone! It's me, Emily, Jason's wife. I thought I'd give anyone who cares an update on how we're doing.
I had my stem cell transplant in April, and so far, so good. I got through it without any serious infections or complications, and was out of the hospital after less than 3 weeks, which is pretty much record time. We had a PET scan back in late May that showed "minimal" cancer activity in my chest, but PET scans are notoriously unreliable when it comes to Hodgkin's Disease. My doctor feels that the scan was inconclusive and we will be doing another one in late September. I'm still on a lot of opiate painkillers as well as a daily injection of Lovenox (a blood thinner that I need because of my blood clots). However, I'm feeling great. No itching, no night sweats, good appetite (hope I don't gain any weight back!!), good energy levels, etc. It's hard to explain, but when the cancer was growing inside of me, I knew something was badwrong. I just simply don't feel that way anymore. I feel healthy... I don't feel like I have a big, evil tumor inside me trying to kill me. So we're cautiously hopeful and optimistic.
I thought you guys might find the fertility preservation procedure that I had done interesting. Here's a technical article about it:
http://theoncologist.alphamedpress.org/cgi/content/full/12/12/1437
To sum it up:
Before receiving my autologous stem cell transplant (see Humbert's post above for that explanation) I received a basically fatal dose of chemotherapy. In addition to wiping out my bone marrow, it also made me sterile. However, before receiving that chemo, I had one of my ovaries removed and cryopreserved. They are unable to preserve the entire ovary because it will form ice crystals, so they freeze it in slices. In two years, once I've been given a clean bill of health, they will take one or two of these slices and graft them back into my body... either in the crook of my arm, or my groin, or some other weird spot. Then, via magic, the immature ovum contained within the ovary slice will start to mature. I will begin producing hormones again, and start menstruating again. Sometimes, in extremely rare cases, also by magic, the dead ovary will wake up and start producing eggs again. They will then harvest the now-mature eggs from the graft that they did, and we can go ahead with normal IVF procedures. This procedure is only about 5 years old, and I am part of a study with the doctor who invented it, Dr. Kutluk Oktay. No, not Cthulhu, Kutluk. In those 5 years, he has "produced" something like 14 children via this method. It's pretty incredible, ground-breaking stuff. Of course, the Pro-Lifers won't like it, but screw them. |
Tongue-tied and twisted, just an earthbound misfit, I. |
| Edited by - emsby on 08/20/2010 11:00:43 |
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Dr. Mabuse
Septic Fiend
Sweden
9688 Posts |
Posted - 08/21/2010 : 07:46:34 [Permalink]
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It's good to hear from you!
And especially nice to hear about the prognosis looking up. Hang in there!
PS
Cthulhu, huh? Well, alliances in the strangest of places. I can understand why you would think pro-lifers might be upset...
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Dr. Mabuse - "When the going gets tough, the tough get Duct-tape..."
Dr. Mabuse whisper.mp3
"Equivocation is not just a job, for a creationist it's a way of life..." Dr. Mabuse
Support American Troops in Iraq:
Send them unarmed civilians for target practice..
Collateralmurder. |
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emsby
Skeptic Friend
76 Posts |
Posted - 08/21/2010 : 08:24:04 [Permalink]
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Originally posted by Dr. Mabuse
It's good to hear from you!
And especially nice to hear about the prognosis looking up. Hang in there!
PS
Cthulhu, huh? Well, alliances in the strangest of places. I can understand why you would think pro-lifers might be upset...
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Thanks so much! |
Tongue-tied and twisted, just an earthbound misfit, I. |
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HalfMooner
Dingaling
Philippines
15831 Posts |
Posted - 08/22/2010 : 04:43:13 [Permalink]
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| I'm so glad we heard from you, embsy, and such wonderful progress! Believe me, I understand how good it feels to be free of night sweats. Had my Hodgkins been at stage 4 back in 1984, I'm pretty sure I would not be here. Your treatment did not exist. Wonderful stuff, medical science! Thanks again for the update. It makes me feel wonderful. |
“Biology is just physics that has begun to smell bad.” —HalfMooner
Here's a link to Moonscape News, and one to its Archive. |
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sailingsoul
SFN Addict
2830 Posts |
Posted - 08/22/2010 : 08:38:03 [Permalink]
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| I don't know how I missed this when it was first posted. Best wishes, stay strong. SS |
There are only two types of religious people, the deceivers and the deceived. SS |
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H.H. and Emsby
