Susan's Hodgkins II Page - Extra

Everybody wants to get better

2008-05-17T12:08:00.002-04:00

I went yesterday to have a scan done and will find out the results at a later appointment. (Tom Petty always comes to mind here, the waaaay-ay-ay-ting is the hardest part..)

Having been told "it would be naive to think the radiation will cure you" I'm still holding on to a hope here that the radiation knocks the lymphoma down for a good long while, maybe long enough for something else to come along and consider promising to cure me? Maybe it bats it back to remission for another decade, long enough to almost think it's gone for good. Maybe miraculously it is just gone, and stumps all the docs as to why. Who knows? I can't say that I won't worry over it, but I will insist on being at least equal in optimism on what could be possible. Thing is, I also have to deal with the reality of what is probable.

After this radiation my options are down to clinical trials and the stem cell transplant. What was recommended to me was a haplo stem cell mini-transplant. The hope is in using one of my parents as a half-match donor and receive their stem cells, along with higher dose chemotherapy. Just like the bmt I had back in 1993, the chemo hopefully kills all the cancer and yet doesn't kill me, then the stem cells come in, engraft, regrow, and I get a new immune system which knows how to fight lymphoma. This was first presented to me over a year ago. I've done a lot of thinking about it. I've had some contact with people who have gone through it or something similar. I have to tell you honestly, I still don't like it. To this point, I haven't yet been able to imagine myself voluntarily signing the consent forms and heading down this path. Doesn't mean my opinion won't change..but as of today, it's a hump I can't get over. I found a pretty good explanation of the basics on haplo.org - as most searches bring back very technical info, this at least gives the concept in more simple terms. Take the percentages with a grain of salt, however, because I think it hasn't been updated in a few years and I don't personally trust all the numbers.

One of the most ghastly parts of transplant, to me, is that you ought to try it at the moment you are at your strongest point. You have to take a gamble at saying - I could feel well for a long while yet but eventually it will go bad. This thing has a chance to cure me and also a chance to kill me or to bring along serious side effects that will make my quality of life lower than it is today. Or not. Maybe I'll get all the way better and feel great. There's no way to know what will happen. You can wait - but if your illness gets worse, the chances of the transplant being successful go down, and it's even possible that you might not be a candidate anymore.

I've been thinking about "Deal or No Deal". You have a decent, but not outstanding, offer from the banker. You can take that, or you can try another case. You could end up a millionaire, or you could end up losing that great offer and find out you've got $5 in your case. I'm not a big risk taker! When I am watching that show, often enough I grimace and say "she ought to take the deal now!" Once in awhile, the contestant will take the deal that I think I'd take. Many of them keep playing. A lot of times where I said to take the deal was the highest offer. But of course, a few come out to be millionaires or make out much better.

When it's your life on the line, it becomes a lot bigger than an academic entertaining question. If you can feel pretty sure that you'll feel good for still some time, but know that at some point it will go bad... do you want that time? Of course you do. Are you willing to risk that time, maybe give it up all together, for a chance.. a risky and highly unsure chance.. that you'll get more (quality) time after? I just don't know.

When I went to see specialists for a second opinion, one of the things that was said to me was "In your situation, it is reasonable for you to choose any of these options." Even including do nothing at all. I appreciated that statement, because I think we are given a lot of messages in life that we ought to be brave, and have the guts to take big chances for the payoffs, go down fighting, never say die, and all of that. Everyone in my life has been nothing but supportive to me (thank you!). Nobody has put any pressure on me about what decisions I ought to make. I'm grateful. But I feel some pressure anyway. Maybe it's just hardwired instinct for survival - you feel like you have to/ought to /should do whatever it takes for a chance to go on. Your rational mind comes in and says - but wait - listen - pay attention to what could happen here. Internal conflict!

No matter what the results of the scans I had yesterday, these things don't change. The best case scenario, to see no evidence of active disease, the question still looms if I should take this "strongest point" and consider going for that cure. With every scan, the results are important. You try not to think about it too much, but you can't help holding your breath a little, wanting to hear and at the same time dreading to hear what they will say. Your future is hanging in the balance.

I think I mentioned Leroy Sievers' 'My Cancer' blog here before - if not, let me mention it now. Leroy's post today is about hope, and wanting to get better, even in the face of reduced possibilities:

I want to get better.

I don't think about that a lot. I don't let myself. I spend more time thinking about living with cancer, having the best life I can under the circumstances. And don't get me wrong, I'm a realist. I'm honest with myself. I know what's happening to me, and what's likely to happen in the future.

But I still want to get better.

"Having the best life I can under the circumstances." This is where I am, too. Deciding what that is, what that means, how to get there. How to be at peace with whatever decision is made. I don't want to be on my deathbed saying "I wish I had gone for the transplant." I also don't want to be suffering effects of transplantation and saying "At this moment I would still be doing fine if I hadn't done this." Whatever decision is made, I need to be confident that I've done the best I could, that it was the right decision for me.

Why make a post about all of this? Maybe just to let you know that I am thinking about these things, thinking hard about them, even though I may not talk about it often. To let you know whatever decision I make isn't made lightly, that I'm aware of what is out there (and yes I've looked at other clinical trials, too) and I'm not being pushed down a path but am consciously choosing where I go. And that it's not an easy choice.

OK, so I'm a little nervous about the scans!

A reading recommendation for you.

Not Fade Away

Interview with the author Laurence Shames

Alese Coco - Fight 2 Win Campaign

2008-05-06T23:39:00.002-04:00

Alese Coco - Fight 2 Win Campaign

Alese Coco died on May 7. 2007 after a 5 year battle with Hodgkins. She was 23 years old. See her story here.

Her family and supporters have begun an organization to fund research and programs particularly for Hodgkins Disease. The new website looks great!

I'd highly recommend reading the "Hodgkins Myths" section of the Fight 2 Win site.

Why funding just for Hodgkins is important? Consider the last paragraph of that page:

Because Hodgkin's is considered curable by many and affects a relatively small number of people, about 8,400 each year in the United States, researchers and drug companies have no incentive to study this disease in search of a cure. Finding a cure depends on the efforts of the people whose lives have been touched by this disease and on researchers who care. While the chance of a cure may be high compared to some other cancers, for patients and the people who love them, only a 100% cure rate is acceptable.

There are 30 sub-types of lymphoma - 5 of them are Hodgkins. The other 25 are Non-Hodgkins. (see LRF for more details)

hmm..subscriptions....

2008-03-26T21:37:00.000-04:00

I just noticed my post from March 1st said "I saw the Doctor on Thursday who subscribed anti-nausea meds for me.".

Heh.. I think I've been working too much. That word would be 'prescribed', yes?

Please say a prayer for Sarah and Lorraine

2008-03-01T13:55:00.002-05:00

In my travels of websites and blogs about Hodgkins, I found Sarah's page. I didn't know Sarah, but her blog is very expressive. Facing some of the same issues that she faced makes me feel close to her. She died January 30th of this year, having found out last May that her auto-SCT failed. She did not have a good match for an allo-bmt, and chose not to pursue that option. She was 43 yrs old, and is survived by her partner of many years, Lorraine.

Journey to Babeland

Journey to Babeland - May 2007

Port-a-cath picture

2008-02-10T11:04:00.000-05:00

Fellow Hodgkins fighter Tim recently had his port-a-cath removed and posted a picture of the device and also what it looks like inside on an X-ray on his blog. I thought some of you might be curious and it is a pretty good visual on it, so here's the link if you want to see.

As for me, the way mine is positioned they have repeatedly had troubles getting the needles in. The nurses have told me a few times that they thought it flipped around, so that the needle was trying to get into the back side of it. But when I went to the specialist unit handling it, it hadn't flipped, it's just for some reason hard for them to get to. (Even with the special needle, and laying down).

So when it isn't being used it needs to be flushed every so often (at least every 6 weeks). Mine is overdue because the first time I went to get it flushed there were administrative problems in doing it. I rescheduled an appointment and then the second time the nurse couldn't access it. Thing is, we don't know if there's a problem actually flushing it if you can never get the needle in there to do it.

So I am going Tuesday morning 2/12 to the specialists to see if they can access it and flush it. Hopefully they can. I want to also get it out, but I don't want to delay my radiation anymore by waiting to schedule a surgery and do it. So I hoping this will buy me another 6 weeks, I can do the radiation, then have it removed later.

Prayer Quilt

2008-02-05T19:07:00.000-05:00

I am very lucky, blessed, and grateful for the support I have received from so many family members, friends, colleagues, and good people I don't have the pleasure to know well personally, who have heard of my situation with fighting cancer. In moments when I find it hard to be grateful for the positive medical things I try to pull from my experience, I am never at a loss to find peace and gratitude from all of you who have shown me kindness and support, love and prayers.

Thank you. I cannot say it enough, to all of you. I love you.

Recently I was moved by a very touching display of this compassion and caring in the form of a beautiful Prayer Quilt, made by the Assumption Prayer Quilt Ministy, the church of cousins Mickey and Jackie. The quilt is beautiful, but the thought and prayers behind it are amazing. I felt it myself, and everyone I have shown it to has responded with a strong feeling of love and hope.

The letter which came with the quilt explains that each of the threads hanging from it have knots, where each knot represents a prayer that was said for me in their church.

I hope pictures can show what my words fail to convey.

from the local paper

2007-10-25T19:07:00.000-04:00

Drexel student overcoming HD

People to hold in your thoughts and prayers

2007-09-27T19:06:00.000-04:00

It's been a very emotional week for me, starting with a family tragedy and progressing through to getting back to work and finding things coming together. People have been very kind to me, and generous in many ways. We get so much negativity from so many directions that it is easy to become cynical - I feel that it's really important for me to recognize the caring and concern that has been sent my way. Thank you. I don't think I can say it enough, but thank you.

In that same spirit, I want to share my own caring and concern for three sets of people, and I hope that you'll join me in holding them in your thoughts and prayers.

First, to family. Especially for my Aunt Penny, my cousin Marie and her son, David, and my cousin Dominic and his wife, Sierra, with heartfelt love and condolences on the passing of my Uncle Dom (obit). Uncle Dom was a dedicated family man all of his life, and a hard worker. It was a very sudden loss, with only a few days between diagnosis of cancer to his passing, leaving his immediate and extended family with shock and sadness. He will be missed, and remembered in many prayers and thoughts, as well as for strength for my aunt and cousins to go on without him. Much love.

After returning to work on Tuesday this week, I noticed flyers posted around the office for a benefit happy hour taking place next Monday, Oct 1st, at Adelphias in Deptford. There's a newspaper article from the Courier Post, but unfortunately it's a couple of weeks old and already in their archives so I can't post a link here. It's about three sisters. One of them, Beth, is a co-worker of mine. Her sister, Cathy (or Cate), moved to Las Vegas last year to take a job teaching third grade. She's 39 yrs old. At the end of June this year, she was in a car accident. The day after the car accident, she suffered a stroke which left her in a coma. She's now out of the coma, and is doing better but still has a long road of recovery ahead of her. Beth and her other sister, Deb, are trying hard to get Cathy home - the cost of medical bills and the travel expense to get her home from Las Vegas is going to be about $20k. I'm so touched by their story and their determination.

Here is info on the benefit:

FUNDRAISER NIGHT FOR CATHY!

MONDAY, OCT. 1ST
7-9 P.M.
ADELPHIA RESTAURANT
1750 CLEMENTS BRIDGE RD
DEPTFORD, NJ

$25
Includes happy hour buffet/open bar

50/50, Chinese Auction and Door Prizes

Proceeds will go towards Cate’s medical bills and flight home!

Please contact:
Deb DeCarlo (856)719-6775 (DS0426@aol.com)
Beth Kengeter (856)845-7805 (Betablue32@yahoo.com)
For ticket or donation information

www.carepages.com - cathygilday

The third group of people I would like to ask my loved ones to remember today are people that I do not know personally. I've never met them or even exchanged an email, but over the past nine months I've shed many tears for them, both in sympathy of their grief and in awe and admiration of their spirit and dedication to love and life. I first heard about James and Katie Smith in another Courier Post article, published in December 2006. It's already practically a miracle that I'd read the article, because I am not a very big newspaper reader (John can attest to this). Surely I saw it sitting on the table, just happened to be folded over from when John last read it, and the headline caught my eye. I no longer know exactly what it said, but it was something akin to "Local Widower Tries to Raise Awareness of Pancreatic Cancer".

For my own personal story, I remember clearly that this happened when I was a bit on high alert over the holidays, during that period in between when I found out there was something on my scan (Dec 22) and when I found out that it was likely recurrent Hodgkins Disease (Jan 15). So in that time period I was all over the place in between "Hey I'm sure it's just scar tissue" and all other possibilities of the imagination. It probably had a bearing on why I picked up the newspaper and read this article which on some other day I'd might not have even scanned. The story was heartbreaking, and the article had a link to the Carepages site (www.carepages.com -katieshug) where I later went and read the full blog, and have been reading all the updates ever since.

Katie's mother posted a synopsis of their story on their carepages page last week, which she sent to the Oprah show in hopes of including them in a show to raise awareness of the disease which took her daughter's life. Here is a segment:

November is Pancreatic Cancer Awareness Month.

Katie died during Pancreatic Cancer Awareness month. There should be tv shows, news articles, etc. and we would like to help. We need your help,too, please. If you would like to help raise awareness through Katie's story, perhaps you would take a few minutes today or as soon as possible to fill in the form on Oprah's web site. Here's the link:

http://www.oprah.com/email/reach/email_showideas.jhtml

We would appreciate your help so very much. The Oprah Show gets many, many requests for stories, I know, but if enough of us send a request for Katie's story to be included, it might make a difference.

Below is my request that I sent in this morning:

"Are all your shows set for Nov.'s Pancreatic Cancer Awareness Month?
Pls see my son-in-law: http://www.youtube.com/watch?v=Yc2hBqIMkNs
My pregnant 32 yr old daughter was diagnosed last September 20th. She lost the baby on Oct 11th and she died on Nov 25th, about two months after being diagnosed. Her husband lost his wife, his only child, his plans for the future. She was an outreach family therapist, helping children and families in crisis. She touched thousands of lives. She could have helped many more had she lived. She was a beautiful, strong woman who comforted others as she died and planned her own memorial service based on 'but the greatest of these is love'..encouraging all of us to help our fellow man. She had friends of many races, creeds, and ages. She filled a church to overflowing even with some people who had never met her in person. Her husband is trying to reach as many people as possible to emphasize this disease is striking more and more young people and there is a tremendous need for early detection.
Thank you for your consideration."

Please send in a request for Katie's story to be told.

Love to all,

Susan

Article Link : Many Cancer Survivors Return to Work as Usual

2007-08-03T04:39:00.000-04:00

NEW YORK (Reuters Health) - When a person is first diagnosed with cancer and undergoes treatment, their work may suffer; but in the long run, most people who survive cancer work a similar number of hours as anyone else, new study findings show.

"Cancer patients have reason to remain optimistic about the future," study author Dr. Pamela F. Short, of Pennsylvania State University, told Reuters Health. "There are more than 10 million cancer survivors in the United States, and cancer is no longer the death sentence that it once was."

"Furthermore," she added, "our study suggests that the careers of survivors are not usually affected over the long term -- especially if they remain cancer free."

(cont'd)

Article link : Promising Treatment Found in Hodgkin Lymphoma

2007-08-03T04:18:00.000-04:00

Science Daily — Dana-Farber Cancer Institute scientists have identified a protein that prevents the body's immune system from recognizing and attacking Hodgkin lymphoma cells. Based on this finding, the researchers are now investigating targeted therapies to disable this molecular "bodyguard" and boost a patient's ability to fight the blood cancer.

Re-Mission! The Video Game!

2007-05-30T17:36:00.000-04:00

Really! I'm not kidding!

There's a new video game out to help teenagers (and I guess that means I'm too old?) work their way through cancer treatment.

Here's the article. Kinda interesting. They say next up is the video game to fight obesity. Wow. We've come a long way since Space Invaders and Astroids!

Hodgkin's Disease; Hodgkins Lymphoma

2007-05-26T00:04:00.000-04:00

Well ever since I had Hodgkin's Disease (HD) the first time I was told I had lymphoma, but I have been curious about the use of Hodgkins Lymphoma (HL) apparently taking over the medical lexicon when referring to the particular brand of lymphoma to which I am unfortunately linked.

So I decided to look it up. What in the world did we do before Google?

From an abstract of The Annals of Oncology, available through IngentaConnect (for the readers from work I just had to add that detail) I found:

In the past decade there have been many advances in our understanding of Hodgkin's disease. Among the most important is the discovery that the Reed–Sternberg cell is a lymphoid cell, in most cases a B cell, and that it is clonal, and thus a true lymphoma, deserving of a name change, to `Hodgkin's lymphoma' (HL).

The many faces of Hodgkin's disease around the world: What have we learned from its pathology?
Author: Harris N.L.1
Source: Annals of Oncology, Volume 9, Supplement 5, 1998, pp. 45-56(12)

I warn you that - since like me you are probably not a medical professional - you might get dizzy if you try to read this article. However, even though I only understand about 55% of it, this seemed to be the best explanation to answer the question.

Because of the accumulated evidence of B-cell origin, pathologists on the WHO Committee recommended a name change from Hodgkin's disease to Hodgkin's lymphoma. Because of resistance from some committee members concerned about possible confusion with non-Hodgkin's lymphomas, the recommendation was made to permit both terms as acceptable synonyms for the time being.

Another thing I wanted to mention - for those of you who are impressed by visuals more than words - check out Neil's Nodes. This is a man who is part of a mailing list for HD patients and caregivers - his photos are excellent and it's an interesting way of capturing the "Story" of a cancer patient. Warning: Not necessarily for the faint of heart. If you're on the squeamish side when it comes to medical stuff, then maybe you should skip this one.

Inspirational People: Patrick Pedraja

2007-05-18T22:12:00.000-04:00

11 year old leukemia patient travels the country to get people to register with the bone marrow registry.

I heard this story today at lunchtime on KYW.

His goal is to get 2,007 people to register this year.

Koppel on Discovery: Living with Cancer

2007-05-09T05:05:00.000-04:00

I watched a good documentary the other night, hosted by Ted Koppel, which featured Leroy Siervers (Journalist), Elizabeth Edwards, and Lance Armstrong.

Leroy Siervers does a program on NPR, and also hosts a blog. He talks about many issues that will come to most people affected by cancer in the day-to-day life.

During the program, the statement was made "The Blog has taken on a life of its own."
I wondered about mine. So far it seems to be pretty well-behaved. Of course I have a much smaller audience than NPR.

A related link for the progam is also hosting this cancer collage. Anyone affected by tthe disease can add themselves in a link to other cancer patients. I couldn't resist. If you want to find mine - best thing to do is "search by name" and type susan. If you're running an older machine you might think twice before you do this. My pc just barely choked along with all the graphics. But newer machines should handle it fine.

A couple of weeks ago I posted here about Alese Coco, whose story I found to be very touching and inspirational. This week, Monday, the sad news that Alese died due to respiratory complications. She was 23. Although I've never met her or even communicated with her personally, I was quite affected by her story and her death; my heart goes out to her family so deeply I can't begin to express it. The only consolation is that she doesn't have to suffer anymore. I've sent a donation in memorial to the Lymphoma Research Foundation.

What do you mean she doesn't really resemble me?!

2007-05-03T21:40:00.000-04:00

I thought it was a fair enough likeness.

Inspirational People: Missy Sutton / Cindy Parker

2007-04-27T23:12:00.000-04:00

Missy's web page

In March 2004 I received an email from a woman named Cindy whose daughter, Missy, was fighting Hodgkin's Disease. She had found my website while sitting at Missy's bedside as Missy was fighting infections and preparing for a stem cell transplant. She sent me a link to the page she was updating about Missy's experience.

Cindy kept a detailed journal of Missy's battle with Hodgkins, and turned her page into a loving tribute to her daughter, filled with helpful medical information, inspiration, and obvious overflowing love and support. She has included photos of some of the stem cell transplant procedure, with detailed explanation from a family point of view of what this is like.

I can't find words to paraphrase this, so I will quote directly from her page:

On May 19, 2004 at 7:35 A.M., just 15 days after transplant, we lost our beloved Missy to pneumonia. She would have been 26 years old in just 18 days. Battle scarred and valiant, she gently left this world on a beautiful spring morning at the Medical University of South Carolina in Charleston. Our Carolina Girl turned Hodgkin's Warrior, flew from our lives to become our Carolina Angel.

I visited Missy's page long ago, and found this e-mail as I was sorting through old email files. I went back tonight and reread her story. I cried for her, and the loss that they all have suffered, but most of all remain touched and uplifted by so much love and inspiration.

Sick Humor (but I laughed...)

2007-04-27T21:47:00.000-04:00

OK, I found this on an e-mail list for Hodgkins patients. It might be the kind of joke only the actual patient can laugh at, but it did give me a chuckle (the kind you roll your eyes and groan while chuckling, amazed even at yourself that you're laughing).

Q: What do you call somebody that feels the need to get Hodgkin's over
and over again?

A: A lymphomaniac

UPDATE - In case you come here from the "Facts" page...

2007-04-18T22:09:00.000-04:00

For some weird reason, blogger robots have come up with the idea that my blog is SPAM, and has disabled my ability to post! So much for my great Idea of keeping everyone informed easily!

I sent them a request to unblock it; they say they review and unblock within 2 days. So when they do, the message below should show up in the other side of the blog.

Chemo done for the month -

That's right! Today was the 2nd and last chemo for April. Next day (maybe) - May 3rd. This will start cycle 2, if the blood counts are in good shape. Otherwise, the chemo may wait until the following week.

Only received Gemcitabine today. The symptoms were pretty much the same as last week, but better because a) only 1 drug, and b) hardly any pain left from port surgery.

I also saw my oncologist. She wrote orders to give me an injection to help with anemia (low hemoglobin count) and also a sleep aid. I have been sleeping a lot but sometimes I'm having trouble sleeping at the right time. I will see her again for my next date with the infusion room on May 3rd.

Thank you all for your thoughts, prayers, and heartfelt messages, both public and private. I hope your week is going well for you.

love,
Susan

Inspirational People: Alese Coco - Fight 2 win

2007-04-16T19:26:00.000-04:00

One of the things I have done in the past month has been to try to connect with others facing similar challenges to mine. There is an email list which has been around since 1995 devoted to Hodgkins Disease. I was a member of it close to its inception, but had unsubbed as my life got busy with marriage and work, and thankfully being cancer free...

I have recently rejoined, and am still in the process of getting to know the people who are posting there. Even without direct contact, it is uplifting to be exposed to such a group of people - we can learn from each other, not only in regards to medical experience, but also in facing such challenges with dignity and compassion towards ourselves and others.

I spent a long time last weekend looking over the site of one such courageous soul. Diagnosed with HD when she was 17, Alese is now 22 and presently undergoing preparatory procedures for a possible second transplant. I found her story amazing and inspirational, from her own words and photos to remarks from her parents. My heart goes out to Alese and her supportive family, along with hopes and prayers that her treatments succeed to give her the cancer-free life she deserves.

Alese Coco - Fight 2 Win

Cards & Kids

2007-04-13T16:03:00.001-04:00

Not too long ago I had a great experience!

I went out to get my mail, feeling a little down with all the stuff going on, and stuffed full in my mailbox was a big envelope. I looked at the return address and noticed the school name - Yay! I knew what this was and I knew I was in for a real treat.

My niece, Rebecca, along with her teacher and second grade classmates had sent me greetings made from construction paper and crayons. Rainbows! Flowers! Suns and smilies! Along with such sweet sentiments. If anything can cheer you, it is a package of cards made with love from children. You can feel it oozing out of the cards!

I had this experience before, years ago, when I was newly diagnosed the first time. My brother, Tim, and his class sent me a similar batch - I have kept them all these years and after I received Rebecca's cards I also pulled out Timmy's for another look. So sweet! Thank you!

From Timmy's class, 1993:
1 2 3

Comic relief...

2007-04-01T23:14:00.000-04:00

This is for the girls reading who knew me prior to 1986... all others just skip this one. :)

If only this were my doctor..?

Jonathan Alter - My Life With Cancer

2007-04-01T12:35:00.000-04:00

I just came across this article online which is dated from the April 9, 2007 issue. I must be ahead of the game since on my calendar it is only April 1st.

I have heard of Jonathan Alter's story before - he was featured in an article in Lymphoma Update, which is a publication put out by the LRFA (Lymphoma Research Foundation of America) that I have been reading for many years. He is in remission from a form of Non-Hodgkins Lymphoma, called Mantle Cell Lymphoma, which has been said to be a particularly bad form of cancer with a poor prognosis.

Of course, that only means so much. Hodgkins Disease is typically thought of as a "good" form of cancer to get. I couldn't tell you how many times I have been told "If you have to get cancer, Hodgkins is a better one to get". Well, ok. It has better survival rates. But as I like to mention, an 85% cure rate doesn't really make you feel great when you're one of the 15%.

Anyway, I read about Jonathan Alter's cancer battle before. I find his article to be right on. He discusses his original diagnosis, coping with family and marital issues, chemotherapy and ultimate an autologus transplant. He mentions the anxiety of scans afterwards and the hope of continuing living throughout all of this mess. Since I've been a survivor for over 12 years I can relate already to all of those things, and since I'm newly diagnosed with recurrent disease, I can also newly relate to the comments he makes about diagnosis.

This struck a chord with me:

Physically, I felt OK; emotionally, I was in hell. A woman I knew who was dying
of breast cancer told me that none of the pain she was suffering at the end of
her life compared with that first month and the daze of diagnosis.

This is where I'm at now. I'm exhausted; probably mostly from the stress of dealing with this since the end of December. It certainly isn't from the treatment, since it hasn't started yet. Sometimes I wonder if there is some fatigue coming from the cancer itself; the symptoms tend to be insidious and can easily be passed off for other things - I know that all too well from the first time around! But really, I think I am just exhausted from the stress of it; from not sleeping well enough sometimes, from trying to block it all out and attain some sense of normality while I am waiting to begin, from worry over what is looming ahead.

But aside from this emotional stress and fatigue, I am feeling fine. It must be an interesting psychological study, if you can be objective enough, to think about the position that a person who is asymptomatic with a disease needing treatment which will make you ill is in. You can't feel or see anything that is wrong. So you have to walk into a place physically feeling as healthy as can be, and say "yes, by all means. Please give me that stuff which is going to make me ill, deplete my immune system, make my hair fall out, and give me mouth sores." So that the thing I can't see and isn't bothering me at all will not kill me, or at least not as soon as it would like to. Even though the treatment itself might kill me, as well. Then next week I'm going to come back and do it again.

So much of Mr. Alter's article was a close parallel to my actual experience, both the first time, and now with recurrence. If you would like to get a good idea of what is going on with me, it might be an interesting experience for you to give the article a read. Here's the link.

If you paraphrase just a bit, you'll hear in this paragraph a basic summary of my current situation, for one of those "relapsed patients".

He told me that my two-year odds of survival were essentially a coin toss, and
that my best chance to improve them lay in four months of accelerated
chemotherapy, followed by a bone-marrow transplant, an aggressive regimen
previously used mostly for relapsed patients.

And, another of my "favorite" issues - the Attitude.

Studies show no connection between a good attitude and reducing tumor size and I
can't stand the way our therapeutic society makes people feel that cancer is
their own fault because they weren't more chipper. But mind-set is important.

Right on.

This issue of Newsweek has several other articles of interest. Of course, the whole thing is inspired by the recurrent cancer diagnosis of Elizabeth Edwards and Tony Snow in recent weeks. Just happens to be timely for me, as well. Lance Armstrong says "I don't understand why it requires two very upsetting announcements about cancer recurrence to prompt a national discussion about our nation's second leading killer."

And quoting Alter again, from the article suggesting not to judge the Edwards' decisions:

No one can make sense of cancer because cancer makes no sense. It is random and non-logical, whether genetic or environmental in origin.

No thoughts yet. :)

2007-03-19T22:51:00.000-04:00

Check back later.