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Mon Jan 20 2003 05:44:04 PST
Thank you for your web site and the valuable information you have provided. I have the section on blood tests in my palm so that I can read it from time to time and am finally getting all of this straightened out in in mind. I even tried to do a graph like yours. It turned out OK but not nearly as good. Joyce
Nederland, TX USA
Tuesday, January 13, 2004 at 16:33:39 (CST)
Mike's Resource Pages is now the Lymphoma Information Network - the easiest to use resource for Hodgkin's and NH Lymphoma. I'm glad to see your site still up and going strong. I've updated the LIN site in select areas - Hodgkin's is in the works, hence my visit.
Saturday, January 10, 2004 at 13:04:31 (CST)
just surfed in..
Thursday, January 08, 2004 at 03:02:05 (CST)
Great site!! I am 39 years old and was recently diagnosed with NSHD Stage IIA. I am undergoing ABVD treatments, 4 cycles (total of 8 treatments) and fill follow up with radiation. I have had one full ABVD treatment of cycle 1, the second treatment was only partial because of low white blood counts. I am scheduled to begin cycle 2 in a couple of days. I am looking for information on organic supplements that anyone may have used or is currently using during treatment of HD. If anyone has information or testimonials to share with me, I would really appreciate it. I also welcome any support/encouragement messages.
Moorhead, Minnesota USA
Saturday, December 13, 2003 at 10:17:55 (CST)
MY DAD HAS BEEN RECENTLEY DIAGNOSED WITH HD STAGE IIA. HIS ONCOLOGIST IS VERY PROMISING OF A CURE. MY DAD IS 69 YRS OLD AND IN EXCELLENT HEALTH, HE HAS A VERY POSITIVE OUTLOOK ON LIFE. I'M SO WORRIED ABOUT HIM, DOES ANYONE KNOW ANYONE AT THIS AGE WHO HAS SURVIVED? PLEASE KNOW BAD STORIES!!!
SOMERS, NEW YORK USA
Thursday, December 11, 2003 at 22:06:31 (CST)
What a great site. I managed to gleen a lot of great information to use in asking questions of my daughter's oncolologist. This has been a very taxing time for me and this helped me to better understand the disease and know what questions were important. Thank you!
Bolton, Ontario Canada
Thursday, November 27, 2003 at 01:02:46 (CST)
My parter just completed his last ABVD on 23 October 2003. CT scan shows very small-size tumors. So the doctor ordered to have PET done and some more radiotherapy. We know it is still there. In these three days (17,18 and 19 November 2003), night sweats and pain on the lower back side came back...I do not know anyone body out there has same experience and would like to share some of that. He was diagnosed HSHDIIIB on 1 April 2003.
The Hague, The Hague The Netherlands
Wednesday, November 19, 2003 at 02:44:04 (CST)
I just found out that I am done with chemo! So, now on to radiation...anyone have any stories/advice for radiation?
Charlotte, NC USA
Saturday, November 15, 2003 at 18:19:01 (CST)
my husband has just been diagnosised with HD. We are still in the biopsy stages, its frightning.
Roxbury, NY USA
Saturday, November 15, 2003 at 09:23:59 (CST)
Just got the good news that i am in remission from Stage IIB Hodgkins. How odd is it that I just found this site today while doing a google search?? Must be destiny, sure wish i would have found it during this last year of hell!! But onward and upward!!! take care
Worcester, MA USA
Wednesday, November 12, 2003 at 16:17:27 (CST)
Can anyone tell me about your experience with pregnancy or trying to conceive after ABVD treatment? I was Stage II-NS. I would appreciate any insight. Please feel free to e-mail me personally. Thank you.
Tuesday, November 04, 2003 at 10:52:47 (CST)
I was diagnosed with NSHD IIB on June 6, 2003, at 24 years old. I am currently going thru ABVD, hopefully finishing with it on 10/24 (keeping my fingers crossed!), although my doctor says I may need 2 more cycles, and then on to radiation for 3-5 weeks (he doesn't like to be terribly specific with me because I get a little testy if anyone throws a wrench in my plans). Chemo managed to ruin my 25th birthday, but I guess a vacation wasn't really an option. This site reminds me so much of what I'm going thru...I can't believe it took me 4 months to find this site!!! I am open to emails from anyone with questions, concerns, or advice. Please don't hesitate! Sarah
Charlotte, NC USA
Saturday, October 18, 2003 at 12:07:30 (CDT)
Great Site! I also have NSHD Stage IIAX. Except mine was a gray zone type with CD-20 tumor markers (typical of NHL) so my treatment is the EPOCH-R treatment which is a treatment usually reserved for NHL but has pretty much blasted away the cancer. I just finished up my sixth (and hopefully my last) round of chemo! It's great to see a site like this. Keep it up.
Arlington, VA USA
Sunday, October 12, 2003 at 20:42:00 (CDT)
Great website -- I'm a 15 years HD survivor; going to get a biopsy tomorrow on a node in my neck. HEll yes, I'll fight it again!
Converse, Texas USA
Tuesday, September 16, 2003 at 05:42:53 (CDT)
Thank you for maintaining this site. I wish I had discivered it while udergoing treatment. The quotes are really cool! If anyone out there would like to email me I can be reached at email@example.com. I am in remission from Hodgkin's Stage IIA and completed ABVD chemo and 22 radiation treatments. I was diagnosed 11/19/2003 and in remission as of 06/19/03. I worked while going through treatment and have a two year old at home. Please email me. Thanks again for this wonderful site!
Hahira, GA USA
Monday, September 08, 2003 at 19:05:05 (CDT)
Thanks for the wonderful summary. I wish I had found it a year ago when I was originally diagnosed. You would have saved me a lot of searching. Your comments about continuing to fight this disease really struck home. I keep having quick relapses (even after SCT). I was starting to feel like there was no use in continuing to fight this crap but I'm doing radiation now and this time it's going to work!
Papillion, Nebraska USA
Wednesday, September 03, 2003 at 08:35:11 (CDT)
Thanks for maintaining this site. I've just found it and think that it's awesome, especially for someone just starting "The Fight". I was diagnosed in March '02. Since then, I've done 6 cycles of ABVD, radiation, had an immediate recurrence, a full thoracotomy, 2 rounds of ICE, an autologous Stem Cell Transplant, and more radiation. Whew, that makes me tired! Last 2 scans are CLEAN! That's the goal, no matter how you get there! Again, thanks.
Cullman, AL USA
Tuesday, September 02, 2003 at 22:43:35 (CDT)
Has anyone out there had a baby after ABVD and radiation for Hodgkin's? My daughter will be three next year and now that I'm a well woman I'm getting "babyitis". I've been in remission since June 2003. They told me to wait a year till hd a baby. But I'm wondering after a year if it's even a possiblity. Can it be done with out fertility treatments (Been there. Done that. Threw away the t-shirt. Ain't going back.)Any suggestions?
Hahira, GA USA
Tuesday, September 02, 2003 at 12:04:25 (CDT)
I have found your site very informing - I am 24 and diagnosed with stage IIa NSHD. Thanks for all the great info, and the personal stories! It has inspired me to keep a journal as well.
Rockford, IL USA
Tuesday, August 26, 2003 at 13:20:50 (CDT)
My 30 yr old husband was diagnosed July 31, 2003 with stage IIIA NSHD. He just began his 1st treatment yesterday and it was hard to watch him go through it! But he's tough! He's a stay at home DAD and takes care of our one yr old. He still has 11 more treatments until he's cured..and to boot...I just found out that I'm 2 months pregnant! It's encouraging to read this site and see everyone's success stories! LORD knows we will beat this too and have a beautiful baby to show at the end!
Tuesday, August 26, 2003 at 11:28:19 (CDT)
Thank you for your very informative site. I wanted information to understand the blood tests my father-in-law has weekly before his chemo treatment and your site gave me exactly what I was looking for.
Monday, August 11, 2003 at 17:22:22 (CDT)
Thanx for your work on this beautiful site ! Keep on...
Sunday, August 03, 2003 at 11:22:52 (CDT)
Like I said, I was a healthy 27 year old. I've decided your libido is a fast growing cell and radiation kills it. However, my husband and I assure you it will grow back just like his hair.
Hahira, GA USA
Thursday, July 31, 2003 at 10:52:52 (CDT)
I love your site. I am a 27 year old Hodgkin's survivor and a mother of a 2 year old. My radiologist released me today and my next follow up appointment is Monday. I did ABVD chemo and radiation. Fourtunately I was able to work all through chemo despite being sick as a dog. Work distracts the mind or numbs it.
Hahira, GA USA
Thursday, July 31, 2003 at 10:51:00 (CDT)
My husband, age 46, was diagnosed with Hodgkins Lymphoma, stage 3,in Aoril, 2003. He is undergoing Chemo for 6 months,every two weeks. He is having a very difficult time with the fatigue and his bones hurting from the shot to raise his blood count. He is trying to continue working his job as an accountant, but it is becoming more difficult each week. He has only has 4 chemo treatments and has 8 more to go. Do people usually continue working during chemotherapy or do they find they are too ill to continue working? He also is having trouble with food not tasting right and he also has almost no sex drive at all? Is this a common effect of the chemotherapy? If you have been through similar problems,please write me. Thanks for your help.
St. Louis, Missouri USA
Friday, June 20, 2003 at 19:51:42 (CDT)
Thanks so much for maintaining this website. I am really glad to have had this website as a resource during my Hodgkin's experience. It is both informative and encouraging. I gain a lot of insight from reading about different people's experiences with HD. I'm a 28 year-old African-American female who was diagnosed with IIB NSHD in August 2002. I completed 6 months of ABVD chemo and 5 weeks of radiation. Currently, my scans are clear and I am looking forward to them staying clear. When I was first diagnosed, I had no idea what to expect after hearing the doctor say you have cancer. I was engaged to be married and thought this was the worst possible thing that could have happened to me. But through faith in God and excellent doctors, I am doing well and tolerated chemo without any major complications. My wedding in January 2003 was WONDERFUL and even more special and meaningful because of what I was experiencing at the time. The constant and unfailing support and prayers of my husband, family and friends made all the difference. If you are going through treatment now or perhaps just diagnosed, stay positive, don't give up and have faith in God.
Thursday, June 05, 2003 at 11:57:01 (CDT)
Hi everyone. I have very much enjoyed wandering through this web site. My daughter was diagnosed with HD stage 4 (I think) in 1999 when she was 17. She also had a pre-malignant polyp removed from her bowel (they started looking for Chrohn's disease and luckily found early bowel cancer which is easy to check on every couple of years)before they realised her syptoms were HD. She had a terrible time with chemo and needed a blood transfusion before she turned 18 after which I could give her injections to boost her reds along with injections of Nupogen. She also had viral meningitis and altogether spent a lot of that 12 cylces of chemo really ill. She continued with at least 1 subject at uni during this as well and I encouraged her to take interior design certificate course. She loved it even on those really awful days. All up she coped the diagnosis and treatment pretty well. There is no use moping and feeling sorry for yourself all the time is there! We spent a lot of time laughing and talking and soul searching. She left me to do all the talking with doctors and researching the disease - she couldn't concentrate on what it all meant or which drugs to take for side effects. I just took care of her, of course. During the subsequent 3 years she just got on with her life. She was so well. It looked as though the chemo had 'cured' the HD and she partied and went to uni, travelled with her boyfriend and then got a full time job. Just before Christmas she was told she was in the 97% that would never get it again. But then she started getting sick. Nothing like the original syptoms - more like Bali Belly! Poo tests, blood tests and colonoscopy clear. But she said she knew it was back. We asked for a PET scan and sure enough it was back - same place, very early. The oncologist said it meant that the cells had survived the chemo and ordered radiation. She had 24 treatments. What bothers me is the gradual decline in her general attitude. She is very fatigued. All normal I hear after radiation but so different for her. All her life she has been such a loud, fun, in-your-face sort of girl. Before the recurrence of the HD she was making plans for living and working in the UK. She will not make plans past 6 months now if that. To me she is obviously depressed but still out with boyfriend and friends and having fun and working. I think it is hard for most people to tell how sad and mad she is. She insists she isn't but then says she doesn't feel she will live long. Says she should know, after all, as she knew before the bloods and the onoclogist knew that it had come back that second time.Problem is she refuses to look at any web sites, talk to anyone with or without cancer about it and the doctors take her at face value and think it is me just being a pain-in-the-butt mother! She is having her stem cells collected for 'future recurrances' and won't read the info. Just says 'whatever, just pick me up from work when I have an appointment'. She is difficult to live with. Her siblings find her difficult. We all love her to pieces and I know that even a healthy 21year old thinks the world revolves around them and that these emotions and reactions are normal for what she is going through. It doesn't make it easy. She wont talk about anything remotely related to her health any more. Even if it is just me asking if she wants more vegetables to juice. She can't be bothered juicing them anyway. She says it is boring. Radiation finished about 1 month ago and we have to wait another 2 weeks to a PET scan to see if it was successful. I know that this waiting is really hard for her as it is for the rest of the family. It is hard not being able to reach her. I have been told to just be there and wait until she is ready to talk and I am doing that. I would really appreciate any opinions.
Brisbane, Queensland Australia
Wednesday, June 04, 2003 at 08:41:47 (CDT)
Thank you for this website! It was just what i needed. I am currently recovering from stage IIB NSHB and have completed four courses of ABVD. My docs suspect Elvis has left the building , but they can't tell for sure. I only have radiationtherapy to complete now. What has gotten me through chemo was the idea that after chemo it was just radiation and that wouldn't be so bad and after that my life would be back to normal again. Well, I'm thankfull that this illusion has gotten me through chemo feeling fairly happy, but today the realization hit home that it's absolute bollocks! So I was feeling a bit low, actually no, I was feeling numb with fear and very very sad today. I was very happy to find this site, especially the quotes which made me laugh out loud! If I ever happen to catch myself saying something funny (doubtfull) I will mail it to you hoping to get myself immortalized in your hall of Quotes (if only that would do the trick right?) Well, in a sense I think it does, laughing is healthy. Anyway, I'll definitely join the mailgroup, and I hope I can contribute in some way by sharing my experiences. It has sure helped me to read some of yours!
Tuesday, June 03, 2003 at 12:55:41 (CDT)
This site is very original. When I first saw the map, I had a good laugh about it, especially about the 'endless treatment desert'. And a laugh is healthy, not? Keep up the good work.
Amsterdam, The Netherlands
Friday, May 30, 2003 at 08:13:12 (CDT)
I can not tell you how thrilled I was to discover this web site! I am currently undergoing chemo treatments for Hodgins lymphoma stage 3B. I have had 9 treatments and am scheduled for # 10, the end of cycle 5, next Tuesday. Things are going well and my last tests showed a reduction in my tumours of over 80%. Good news indeed. I could not believe how similar our experiences have been. I, as well, am 5 foot 9 inches tall and weigh 210 pounds. I am a 50 year old man with a great and supportive family. I read your diary with much interest. My diary is almost an exact copy of yours with some minor side effect differences. I mean identicle right down to the blood counts and the neupogen shots. I even managed to keep my hair, what their is of it. It almost made me cry to find someone who has gone through exactly what I am going through. The detail in your site is wonderful. I will be sharing your web site address with everyone I can. Your site made my day! Thanks, David
Vancouver, British Columbia Canada
Tuesday, May 27, 2003 at 13:48:18 (CDT)
I am a 26 year old girl who has come through this whole "Hodgkins thing" twice. I was first diagnosed at 15 years old- I was only a week into high school when I had to leave to go get 35 radiation treatments. I thought that radiation would be easy but later found out differently! I had a really hard time with it. Having family and friends around me helped a lot and I made it through all 35 of them!They tell you if you get 5 years in after treatment that the likelyhood of it coming back is very slim. I was in my 4th year, only 6 months from having my 5 years in ( and engaged to be married)and it's ugly head reared again! I then had 8 months of chemotherapy. I was in college and had to leave to have these treatments. At this point I was almost 21 years old and concerned that I had no education! I got married (with just a skim of fuzzy hair)and now, at 26 have just finished my first year of nursing! I will be 29 when I am finshed my degree but I feel that waiting and getting my health back together before going back to school was best for me.I just went for my yearly checkup and everything is still good! My doctor is concerned about secondary cancers because I was treated with radiation before I was fully developped. It kindof worries me too actually- I have read so much of this occuring. My goal now is to get my body in as good a shape as I can!Having cancer certainly changes a person. I think that we are all more aware, appreciative and empathetic then before we face cancer. People tell you to do this and that but everyone is different and faces things in different ways. For all of those out there having treatments now and maybe having a hard time, just think- it is one year of your life, and when you are finished, you will look back on it and realize that it was just another battle in this thing they call "life"! Chin up guys- the grass is greener on the other side! Honest.I would love to help anyone that has any questions about going through treatments, side effects or just to chat when some "cheer" is needed!Vicki
New Brunswick Canada
Monday, May 26, 2003 at 07:15:15 (CDT)
Diagnosed May 2002...looking at lung damage...going for more scans next week...does it ever end?
Somerville, MA USA
Thursday, May 22, 2003 at 16:49:27 (CDT)
I was just diagnosted with NSHD two weeks ago. I am a 39 year old divorced mother of two young children. Things have been in quite an upheaval for the past two months.Yes! That's how long this diagnosis has taken. Luckily, I am still only stage IIB or stage II unfavorable (five areas - all above the diaphram.) My treatments begin aweek from Friday and I am currently trying to read anything and everything I can find to help prepare myself, mentally, for the next step. Having no idea what to expect over the next several months, it helps to read about the experiences of others. I haven't experienced any fatigue or weight loss at this point. It's odd to feel so good and yet know you are so "sick." It also helps to read the comments of people who really KNOW what I am feeling. I have a virtual army of concerned family and friends around me. I have no shortage of wonderful individuals to talk to and yet, so much of what is happening right now is so very private. Not because of a lack of empathy and understanding from my "inner circle," but because, as with most things, none of them can really (thankfully) understand what it is to be told you have a life threatening illness. I know I am soon to be a card carring memeber of the "survivors club." That assurance comes, in part, from reading web-sites such as this one. Thanks to all who have contributed.
Wednesday, May 14, 2003 at 21:57:41 (CDT)
I was diagnosed Dec 26 2001 with stage 4 H.D. I was 21 years old with a 5 month pregnant girlfriend and only halfway through college. I had thought many times before my diagnosis about how life would be easier dead. When my Dr. called to tell of the biopsy results of cancer, I realized I wanted to live. I am now 9 months after finishing radiation and chemo. I love life. My son is now 10 months, walking, so much fun (most of the time). Life is sometimes as hard as you make it. I was really stage 1 as discovered by MD ANDERSON CANCER CENTER. My local dr. goofed, he thought it was too far gone. Later, it turns out the enourmous tumor in my abdomen/pelvis was just some pooh-pooh. The tech messed up. Anyway, if any HD patients wanna question answered by a fellow cancer brother, I'm here for you!
Houston, Texas USA
Sunday, May 04, 2003 at 17:08:19 (CDT)
Hi Glenn!I'm Eddie a merchant navy officer just diagnosed a mnth back with Stage 1A "Mr Hodgkins" .I've just finished with my 1st round of ABVD, plan is 4cycles and then followed by radiations. I'm doing just great and just wanted to thank you for your great site.I'm sure i'll be writing to you 10yrs down the line ! and to all my buddies remember " Knowledge is power" and "God never gives us more than what we can take " "the harder we are hit ,the stonger we become" Let's all have a great life!!Do mail me !Edwin Lewis.mumbai,India,firstname.lastname@example.org
Mumbai, Maharashtra India
Thursday, April 24, 2003 at 09:37:06 (CDT)
Interesting and informative site. I was diagnosed with HD in 1971 at age 15 in the chest and neck. Rec'd cobalt radiation treatment in 1972 and a spleenectomy in 1973. Survived thus far - now 47! Still have my own hair and fathered 3 children. Problems encountered included breakdown of teeth enamel caused by lack of saliva, some skin issues ie. itching, minor blemishes and moles which have required treatment and general sensitivity to sun, increased susceptibility to shingles and certainly a lack of immunity to colds, flu and other viral infections - particularly in the last 10 years. Had the Pneumovax injection during late '80s and, as not recommended a second time, take Penicillin VK every day. Don't really know if this makes any difference! Facinated to read about celery and peanut butter - I really like both of them unfortunately but as for cheese, since I was ill I lost the taste for it completely and have only eaten it sparingly over the past few years...mind you Queen Elizabeth dosen't eat the stuff either so she must know something! I did have a cousin who was diagnosed with HD in the 1980s. She was in her mid 20s and sadly only survived about 3 years. It's a strange disease but there is hope - and I'm living proof of that bearing in mind that the treatment I received was prehistoric by today's standards. Good luck to you all and live each day to the full!
Fleet, Hampshire England
Sunday, April 13, 2003 at 04:57:17 (CDT)
Had Hodgkins while in the USMC in 1988 @ 21 y/o beat it then. Once again as a father of 2 in 2001 @ 34 y/o beat it again!For those of you reading this and are not sure what to think, email me.
miami, fl USA
Monday, March 24, 2003 at 17:57:32 (CST)
On February 8, 2002, my life has changed forever. I was diagnosed with HD Stage 1A. I went through 4 cycles of (chemo) ABVD and 15 sessions of radiation. I am fortunate today that I'm in remission and I hoping with GOD's help it stays like that for a very long time.I'm a little disappointed that I did not come across this web site before. But I am glad today that I did because when certain days get crazy, sometimes you need to take a step back and say to yourself that you went through a battle that no one else did and life is to short. Keep this in mind, Your life on earth is a journey, make the journey worth wild for you and leave a legacy so everyone you encounter will remember you for who you are. Today, I have this opportunity to my a difference. My prayers go out to everyone who are fighting this battle because I know what you are going through. Be strong and have a positive attitude.God Bless!!!
TORONTO, ONTARIO CANADA
Monday, March 24, 2003 at 11:36:52 (CST)
Excellent site. I am currently two years post cancer and as a PhD student have chosen to write a paper on the "experience of remission". It comes from my thinking on my first reaction, in hearing it, but knowing that testing for my form follicular occurs every 6 months for the rest of my life, I was sure how to interpret the news. Am I moving forward or bak? is my life now in 6 month periods? I would love to hear some short stories on what others experiences were on hearing the word "remission: meant to others, for me it is almost a judgment.
Tuesday, March 04, 2003 at 21:25:01 (CST)
Nice little site I'm a 5 year SURVIVOR of stage 2a hodgkins(nodular sclerosis as well) it can be done i hope everyone out there keeps fighting. Wishing all those good luck.
Edmonton, Alberta Canada
Sunday, March 02, 2003 at 00:03:34 (CST)
Hi,I visited your website today because I'm studying for a Hemopathology exam and got a hit when I was looking for websites on lymphomas and leukemias. Okay, so I'm in vet school, not medical school, but even studying feline lymphomas took me down memory lane to Christmas of '95 when I barely even knew what a lymph node is and was diagnosed with IIIb NSHD. So I had to check it out. I barely even remember that this happened to me and for the rest of my friends and family I don't think it's even a blip on their radar screen, but sometimes one little stimulus (the word "nodular", or the smell of a particular type of hospital handsoap, or a question about the big scar on my chest if I happen to wear a tank top in the summer) brings back vivid memories I didn't know I still had. I'm glad someone out there still cares. Even back then, everyone jumped to the word "curable", breathed a sigh of relief (that they didn't have to think of anything more to say) and went on their way. I never like to say that I had Hodgkin's Disease. It's last name is Cancer and it's first name is Lymphosarcoma (for some reason the veterinary world prefers the word "lymphosarcoma" over "lymphoma" even though they mean the same thing. Lymphosarcoma is technically more correct and I like its dramatic ring.) Yes, it has a title, "Hodgkin's Disease", which sounds like a rare genetic disorder to those who've never heard it and to those few who have, it inevitably illicits a responsory phrase including the word "curable". You know well what "the cure" is. My father must have thought it was a form of the flu, because he visited me only once, briefly, when where I was happened to be on his way to somewhere else. Of course, no one was more grateful than I that I had a 65% chance of recovering from this disease. I wish I kept a record of people's responses (before I gave up telling anyone I had cancer.) I remember being on the bus one day and a former classmate asking me why I wasn't in school. It was towards the end of my staging, when I already knew I was going to get chemo. It was painful for me to talk or breathe. When I told her I had CANCER, she said, "oh, don't worry, my aunt had chemotherapy and it's nothing like what you see in the movies, she never felt sick." (Dying Young was probably the movie she had in mind--this was 1995.) That made me feel a lot better. Why was I so worried about having cancer anyway? You don't even get sick anymore! As it turned out, I had a reaction to Zofran and had to go through chemo without it. I was relatively lean to begin with so the 18 pounds that I lost from nausea and vomiting made me look like a skeleton. "The "cure" also cost a year off of college, not because I was too ill to study but because I needed to work to pay for the 20% of my regular treatment that wasn't covered by my insurance (plus all that "elective" stuff we cancer-patients like to have, like bone marrow stimulating shots when my WBC count was too low), a year of being a white-skinned, eyebrowless, hairless amorphous androgynous freak. I was asked on a regular basis what made me want to shave my head (oh I dunno, but I liked it so much I decided to shave off my eyebrows as well!) One day I was dressed in a sweatsuit, something I'd taken to preferring since my skin and body had become one big sore so that wearing soft clothes, even if only psychologically, made me feel better. On this particular day my gums started to bleed while I was walking outside (it wasn't a nose day) so I walked into Burger King to use the ladies room and rinse out my mouth. A fat middle-aged woman came in behind me and I saw the horrified look on her face in the mirror and then she asked, "isn't this the women's room?" I ignored her, just not feeling like answering questions that day, but she persisted and asked, "are you a girl?"Anyway, I don't like to think about it too often because when I do I feel anger (sorriness for myself) but really there is so much to be grateful for. If I didn't have any insurance at all...where would I be? My other passtime during cancer was paperwork: to creditors and assistance programs and anyone who would show me financial mercy so I could get through my treatment. I am grateful to the American Leukemia Society (now the American Leukemia and Lymphoma Society) for paying for my transportation to Boston and prescription medication (which wasn't covered by my insurance.) I am most of all thankful to two doctors and the head oncology nurse from heaven who respected all of my wishes and decisions about how I chose to deal with my disease and treatment. I never once heard the words "you can't", "you shouldn't," or "I wouldn't..." Finding your site and reading your story was a pleasure. I feel embarassed to talk about the disease I had (why would I want to tell everyone about it now if I was cured so long ago?) In three weeks I will be running my third marathon since I've been in remission. When I had cancer I made a list of all the things I would do when I was in remission. Running a marathon was one of them. (So was getting a truck driving licence--and I did that too, although after passing my road test I had to take a drug test and after I had peed in a cup in front of the controller and washed my hands I promptly puked because the hand soap smelled exactly he same as the soap at Dana-Farber. Remember those breathing tests every month? One time I told the technician that I was going to run a marathon when I got out of here. It was silly, I wasn't even a runner at that time. But I said it very seriously. When I went to chemo the next day my oncologist said he was going to stop the bleomycin because it was damaging my lungs. Good idea, I said. Because I am going to need them in good shape for a marathon. In a way I'm glad I had cancer. How many veterinarians do you think can drive an 18-wheel rig?Robert, I wish you a lifetime of health and happiness and pride for having survived "the cure" of Lymphosarcoma. Thanks for making this website.Amy
Philadelphia, PA USA
Saturday, February 01, 2003 at 17:36:48 (CST)
Thank you so much for this web-site, I have cried reading other people's experiences because they often relate so much to my own experiences. I loved Paul's description of chemo being a "cast-iron bitch"! I have Hodgkin's disease stage IIb and have had 11 ABDV chemo sessions, tomorrow is my last one and I recently had scans done which came up "clear" compared to how they looked in July last year. I am in remission and it has been good to read about people who have been in remission for a long time. We have brought a caravan and in April will set off to see Australia. Our life will change. For 6 months cancer had me but not any more. I meditate, have a positive attitude and have been lucky to have so many positive medical people to help me, they always knew we could make the cancer go away. Sometimes I thought I might die and that forced me to think about how I felt about dying. The idea of dying didn't frighten me and I think we can choose to die and maybe that's the easy way out. Choose to fight and stay alive.
Perth, Western Australia Australia
Monday, January 13, 2003 at 18:13:35 (CST)
Thanks so much for your site....even tho I was just a distant relative (Non Hodgkins Lymphoma) so much of your comments are applicable to my treatment. most of the same scans,drugs and that blessed barium.
Melbourne, FL USA
Monday, January 13, 2003 at 12:30:37 (CST)
Hi Elizabeth, Early menopause in HD survivors is not unusual. You might find the book Childhood Cancer Survivors by Nancy Keene very helpful. It has a lot of good information about late effects. I know from other HD survivors in the UK that it is sometimes hard to find physicians there who know much about late effects. Feel free to write to me for more information. Linda HD 1971
Saturday, January 11, 2003 at 04:13:36 (CST)
Hi I was successfully treated for HD in 1978 at the age of 14 and have had no re-currence. I am now 39 and am currently having hormone tests for what my doctor suspects may be early menapause brought on by the chemo. I would be very grateful if anyone out there has experienced this or has any information about it, Regards, Elizabeth
North Lincs, England
Sunday, January 05, 2003 at 13:38:05 (CST)
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