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Saturday, October 18, 2008

More on ABVD, the Chemo of Chocie for Hodgkin's Lymphoma

First of all, one of the things I learned after my diagnosis is that there are many different kinds of chemotherapy. For doctors, or other people who may have in some way previously dealt with cancer, or chemo this may seem surprising but it's true. I had kind of always assumed chemo was chemo. This is not true at all. There are specific regimens and time tables for various cancers and various stages. I saw people who had to come in 2 days in a row for chemo and I saw others who wore a machine on their side that they walked around with, for how long I do not know.

My treatment was called ABVD. This is the normal regimen for Hodgkin's Lymphoma. My doctor explained I would need 6 cycles. This means I had one treatment every 2 weeks. Each two treatments was one cycle. It got confusing for me and my hubby more often than not reminded me which cycle and/or treatment I was on.

At each appointment we would start off with a small bag of anti nausea meds that would take about 10 to 15 minutes to drip into my port. After that they would bring my meds. There were bags that didn't take so long and there was one I think that took around and hour to an hour and a half. It matters how fast they set it to drip. They had two meds they had to push into me with a syringe. These meds had to be pushed during a certain amount of time. They couldn't push too fast or too slow. When a nurse is injecting this dark red medicine into me I often fell asleep. Seriously, you wouldn't think you could but I did.

My chemotherapy treatments usually lasted around 3 1/2 hours altogether. That's JUST treatment time. That's not counting getting blood drawn, lab work, test results (which had to be done before you could ever get chemo), mixing the meds, seeing the doc, and the nurse finally getting to you. I would always be there the whole day.

Here are the meds broken down:


They each come with their own side effects and even long term effects. Those are all just possibilities not guarantees. Everyone reacts differently to the treatment. I had said the meds were hard to pronounce. The Adriamycin is this dark red color and by the time you finish the treatment you have to pee of course. Let me tell you, no one wants to see red pee...much less when you are pregnant. It happened every single time. I was luckily warned prior to it happening. Bleomycin can cause lung problems. I sometimes wonder if it isn't the reason I still get pressure or run out of air while singing.

I get regular checkups and I'll always have to be more aggressive in checking for other cancers, like breast, lung and thyroid. I'll need to have my heart checked to make sure there is no damage there I believe more because of radiation to that area. I don't worry about any of it too much. I try to take every day, one day at a time. You can't live in fear no matter who you are, or what you've been through. I am just thankful for each day.

Friday, October 17, 2008

Remember the Cheerleading I Mentioned?

My daughter is in the green shirt on the left. She's my oldest Lexi.

My girls did their cheer tonight along with a dance. The dances were so adorable. You can view them here. I went to the football game with the girls alone since hubby's grandpa passed away this week. He's away to attend the funeral. The girls were great and had such a good time. It was so cold though!! I apologize for the camera jiggling everywhere and how it blurs. I don't know why...I am no camera pro so I can't seem to focus when I zoom in. I need to talk to someone who knows cameras! Gabbi kept smacking me and pulling my hair too. I had to hold her because she was yelling at me. Juggling her on a hip and trying to record is not easy. :)

Gonna include links since it doesn't seem to be embedding.

Do You Believe in Magic

Itsy Bitsy Teen Weeny Yellow Polka Dot Bikini

And for a couple of pics:

I'll link so it reduces page load time.

Caution: I Might Get a Big Head

Just kidding. I am a member of a wonderful site called Moms Helping Moms. The owner asked for suggestions for other good mom related sites and I suggested my favorite site Moms at Heart. I have been an admin there for some time. It has went through some changes. It was called Precious Infants when it started. As our babies got older, we changed it to Friendly Faces. Since the activity level dropped we gave it a whole new face lift and now it is called Moms at Heart. I have some dear friends there. I think you would all love it, so check it out if you get the chance. At the time I suggested it she also asked if you would like to be considered for blogs in the spotlight you could send in a suggestion. I did with the other suggestion hoping but not really expecting anything. There are many other wonderful blogs I read every single day! I just browsed the front page though, and there I am! Wow I am just so thrilled and happy that my blog is getting a lot of attention. Please go, scroll down and you can see where my blog is listed on the main page. It's a wonderful site too. I highly suggest these sites if any other moms out there would like to promote their own blog.

Moms Helping Moms

Also, I mentioned in a previous post that I was having trouble with dry hair. I just decided to go into the salon and ask. Well the thinness she does believe (and of course I know) is chemo related. She says that post chemo hair is so fragile that the normal things we do such as blow drying, straightening and coloring are extra harsh. My hair is super dry. So I bought some new products. I will post them soon and also let you all know how they help! I definitely would like to be able to review products like this so in the future if someone is going through the same hair troubles as me, post chemotherapy, I can suggest something that I know will help them.

TopMomma!!!! Can You All Keep Me on Top??

Well I was selected to be featured on the main page of The past few days have really been great! I am so honored to get this too. The thing is, I only stay up there if I continue to have people click on my profile on the main page! If I don't get enough clicks, I fall off the page so please, help me stay up there. I will eventually get a badge for however many days I have lasted! Thanks! So please click below and make sure you click my picture!

I'm a Top Mommma!

Thursday, October 16, 2008

I Got A Topper Health Blogger Badge!

I was awarded this badge today

Top Health Blogger - Wellsphere

I was asked to be a top health blogger for Wellsphere. Please check out the site. I am very honored to do this for the site and hope that I can continue to help others who may be going through cancer.

My Best Friend, My Sister

Looking through pics again. Here is a pic taken at Christmas with my sister Cindi. Yes, we are Cindi and Sandi. She is the younger one. haha Gabbi was around a month old here.

oh my, the red eye is scary. There is that big black radiation X again. I totally didn't notice it first. You can see the biopsy scar right next to it.

What Day is This?

Oh. It's the 16th. follow up is on the 23rd. It's not too far away so I don't have to sit here thinking about it for too much longer. I think the closer I get the more concerned I get with pressure and all that. The fact of the matter is, and one I do regularly deny to myself, is that the pressure has never gone totally away. Phew. Saying that to me, is scary. Scary because then you ask yourself, is the cancer really gone? Then I remind myself I had a PET scan, I feel great, and my blood tests have been normal. The truth is though that vein on my neck has never stopped totally sticking out and still when I sing I feel a lot of pressure in my neck though not nearly what I felt in the old days. I have absolutely discussed some lingering pressure to the doc. Back when I mentioned it he said something about a lot of scar tissue in there, and how it won't be the same. =/ My doctor even said that if I ever had something bad happen to me, like a car accident and the ER did x-rays or whatever of me that they would panic thinking something was terribly wrong with me because my lymph nodes are permanently enlarged and there is a blob of scar tissue in my chest that they would probably think WAS cancer. So I basically have to always be conscious to tell anyone who does a scan of me of any kind that it's normal for me. lol I think the big huge scar on my chest is kind of a sign that something happened there. ;)

Wednesday, October 15, 2008

I Love Looking Through Old Pics

I was browsing old pictures of Gabbi. I love looking at her when she was teeny tiny especially as her birthday draws near. This picture was from the day she was born when my 11 year old saw her for the first time. The photo came out like this with this light shining down on her. I couldn't help but gasp....I mean it looks haha We were praying so hard for her to be ok. We were so nervous and this picture, I don't know. None of the other pics came out like this. This photo is 100% untouched. The size is smaller for easy view on the web but that's it.

Skin Issues During Chemo. NEW October 16th Post!

*This post was saved as a draft and just published October 16th. I had no idea it would post if for the day I saved the draft!

As if you don't have enough to worry about during chemotherapy but suddenly I read that it can cause dry skin, rashes, redness, and to me worst of all ACNE. Your nails can get brittle and peel during chemo among other things. I think with a little bit of extra care most of these issues can be managed. I never had huge issues. I remember my belly and sides feeling itchy but would only get red bumps IF I scratched the spots. Try not to itch! It made the rashes worse or actually develop where I scratched.

Really though the skin problems weren't a big issue for me. I could tell my face wasn't as smooth. The texture was just a bit more rough but that's all back to normal now. There are so many things that you really wouldn't know about chemo unless you are sitting in that chair about to get it yourself, or if a loved one had to go through it. We know it's a poison and obviously can make you sick, but there are those little details such as skin issues that are very important to most women and men! Find a good lotion and remember to use it regularly. My cancer treatment center had a program just dedicated to helping you to look good while sick. It may seem trivial but it's something that you really do worry about. I could suggest some great lotions! There are few I love. I'll save that for another day.

My Husband's Grandfather

We knew he wasn't doing very well this past year. He was forgetting things. I am not positive what his age was, but it was around 80. They called yesterday and said they were moving him to Hospice. I just got the call that he passed away before they could get him there. This is my father-in-law's dad. He lost his mom a few years ago so he's feeling pretty upset of course. My mother-in-law's dad passed away just days before Christmas last year. My husband has lost the last of his grandfather's so please remember him, his dad and all their family during this hard time. I don't know how we'll financially be able to afford to go to the funeral as they lived quite a ways away.

Chemotherapy Duing Pregnancy?

Yes it can be done. Some doctors are hesitant to say so because so little really is known about it for sure. I was always informed it has shown to be *safer* or *possible* in the second and third trimester. I did my own research mostly from stories of other women who endured the same thing. Pretty much every story I read it is from the second trimester or third. I started mine at only 10 weeks. A specialist I saw only one time did suggest terminating simply because of the lack of information and for me emotionally she felt it would be better. Now for me personally this was not something I could do and be better emotionally. I would be much much worse. There was no risk to my health involved. I could get the chemo while I was pregnant and pretty much have faith. I chose to do that. I researched information online and I have yet to find a case where something went wrong with the baby from the chemotherapy. I have found women who delivered healthy babies and older children now from the same situation who are still doing marvelously. You can't very well get a large scale study of pregnant women, with cancer, who have chemo. You would have to divide it into 3 groups. First, second, third trimester. How could you possibly find enough women to really get accurate information? I found a great website called That site is what really helped. I was paired up with a supporter; a woman who had the same cancer as me while pregnant. She had all the same things happen to her and her daughter was currently a healthy 2 year old. I get a newsletter from that site every month or so. Gabbi and I were on the last one. There is a large list of names of recently born babies and their mothers, all who were pregnant with cancer. Some women can opt to wait for treatment, or induce early. I had none of these choices. My doctors didn't feel I would last 3 weeks for the second trimester to begin. I had to start. I couldn't breathe. I felt my baby kick, I felt her grow and her tests all came up good. She had non stress tests and I got a lot of 3D sonograms since I was high risk. She was prefect all the way through. I have no doubt the only thing the drug did was give me some contractions. In the beginning they were very mild. At 30 weeks they were bad enough to admit me. I had 2 steroid injections for the baby's lungs and I was on the magnesium drip for 4 days. She didn't come and I went home. Thank God! It happened again on my last chemo but this time they knew what to do to stop them sooner. The contractions weren't causing me to progress at all anyway. I was in the hospital just one day and went home. My water broke when I was 36 weeks and Gabriella was 6 lbs. 3 oz and 18 inches long. Not too bad ;) Now she is 11 months and 22 pounds!!! Yes, she's a chubby girl. I think I've spoiled her juuuuust a bit. :) I hope this answers some questions about chemo during pregnancy. Just remember if you have to go through this, check out the site I mentioned. They have a lot of information there.

Tuesday, October 14, 2008

My Hair After Chemo

Well, I am pretty depressed tonight about my hair. I realized it's been a year just about since my last chemo. As of October 23rd! That's a big deal and I am very happy. The problem is during chemo I did lose a lot of hair. My hair was so so thin. During ABVD treatments you really are expected to lose it all. I have a feeling my pregnancy hormones may have helped me hold onto some of it. I would wash my hair and it fell out in clumps. I still held onto a percentage. I never cut it, I kept it in a ponytail the whole time. Right before the end of chemo I got excited. I missed my thick full hair and decided to cut it off so that it could grow back healthy and thick. Well, it seems thinner, more fried then ever and just blah. I switched to a good shampoo. I am using Bedhead Dumb Blonde. Yes. It's really called that and no I am not a dumb blonde. It has done well in making my hair shine. In the curly hair pic I think it's pretty shiny! The problem is I have lots of hair falling out still. It's not like before, but it's just breaking off. It's not falling out at the roots it's breaking. It's so fragile that if the baby pulls on it it seems to just snap in half. I am at a loss as to what to do. Before everyone starts thinking, stop coloring it I must say I have colored my hair my entire life and it was always healthy. I don't do it very often. I space it out. I do not wash my hair every day but I do use a flat iron otherwise I'd be a huge frizzy puff ball. I am choking up over this because I want my hair back!! If anyone has a good product to recommend, please, let me know!! I am including some before photos. My hair was so thick and full...and longer. *sigh*

edited to use link because it was huge!

My hair before chemo

and not a drop of makeup in this one =/


Sometimes I Wish

I really do wish I could experience normal things without worrying. I have a wisdom tooth issue. They are growing in sideways. I need to have them surgically removed, or so they say. My insurance wants me to pay a lot of the bill or I would. Regardless every now and then my wisdom tooth on the left side acts up. It will start to hurt, just a bit and when it does I can feel the lymph node under my jaw swell and it hurts. Having had a lymphoma, I can't have a lymph node swell without worrying. It always coincides with the tooth pain and I can SEE the tooth trying to grow. I need to get it out! Who else has had wisdom tooth issues?? I hear it's pretty painful. *bites nails* ;)

The Changing Leaves

I said I'd post an update on the falling of the leaves and the changing colors. It seems my trees are beginning the change. I see lots of fallen leaves and the leaves are starting to turn colors. I see more beautiful colors around town though. I may have to go and snap a few pictures today.

Fine Needle Biopsy, Sounds Scarier Than it Is

I am not sure where to start on this because I can't assume everyone out there knows what a thyroid nodule is to begin with. We all have a thyroid, (if you have never had it removed) and it does a whole lot of things for our body. It stimulates our metabolism, which is why people who are very skinny or very heavy can be said to have a thyroid issue. It does run in my family.

My doctor discovered the thyroid nodules upon physical examination and I thought it explained the pressure I was having in my throat. I still think it might explain for some of the pressure. I can now visibly see one of the lumps in my neck. Some can't tell but if you look closely it sometimes appears as though I have an Adam's apple. UGH. I hate it and part of me just wants it gone but for that to happen we'd have to get rid of the thyroid which is functionally properly. That's not an ideal thing to do. We do have to watch for thyroid cancers since I already have four nodules and now I have had radiation to that area.

Anyway, long story short, they decided the first time to biopsy my thyroid nodules to make sure they were not cancerous. This is all before my cancer diagnosis of Hodgkin's. Since I have four nodules I got around 7 to 8 sticks. They put the needle into a nodule with a sonogram to guide it. It's not like a shot though. They don't just go in and then pull out the needle. No. They put the needle in and wiggle it around to get a good sample. The pain wasn't as bad as I thought though. The wiggling around was a little painful but mostly I felt pressure and like if I swallowed, I would swallow the needle. Obviously I wouldn't but it still felt like it. I ended up with a band aid. It was not too traumatic but anytime someone wants to poke you in the neck repeatedly with a needle you get a little scared. The second time was the day they actually did find the tumor. They ran a series of tests one being another fine needle biopsy which I used no anesthesia for this time around. I had realized that shot hurt worse than the others combined so I opted for none. It was again uncomfortable and scary but not too bad. They got nothing but blood though. They got no good samples and then on the sonogram she saw the tumor. So, I think she was pretty sure something else was wrong anyway. So, that is a fine needle biopsy in a nutshell. If you have other questions ask. I have no problem answering what I can.

Monday, October 13, 2008

Pre-Followup Anxiety

So, this is what happens to me when it's almost time for a follow up. I was doing SO well and then, well as you can see from the post below I got myself a little worked up. I take comfort in knowing it's totally normal and all a part of the process. I was doing good and if my appointment hadn't been rescheduled I think I might not have had much anxiety at all this time around!

I Found Her Page....

I found this website....for a fellow Hodgkin's patient, who did not make it. Oh I may be selfish but I hate it when this happens. I get so depressed and more worried about my cancer returning. The doctors were wrong so many times and that's when I get scared, when I think about that. I also see stories like this, and it scares me more. I must have faith though. I must not think like that. I am so sorry for her. I am so sorry for her family. I read her story and I know what she felt. I will let her tell her story as she did write on her blog here Alese Coco Fight 2 Win

Writing Too Much

I have never really been plagued with writer's block. Actually once I get going it's hard to shut me up. I think that can be just as big of a problem though. You certainly don't want to stray way off topic as I sometimes do. I have a lot of things in my head to write about. I sometimes think of something, forget it and then remember it later. Even in high school when our teacher would tell us to write so many words I would have trouble cutting my piece DOWN while others had trouble filling up the required space. I plan on writing about radiation which I don't think I have really went into a whole lot of detail about, at least recently. I want to discuss my 2 thyroid biopsies. I had superior vena cava syndrome, one of the very major symptoms that the tumor was causing major problems before we knew it was a tumor. I can think of so many things, I just hope I can remember them when I want to! If you out there as readers have a specific question regarding cancer, or a special treatment let me know. I just thought of another thing. I had a certain kind of chemo regularly used for treating Hodgkin's Lymphoma. It is called ABVD. Each drug has a long and rather hard to pronounce name. Each comes with it's own side effects. This particular regimen was not the one they used to use for Hodgkin's. I think it's fairly new as far as chemo goes. I think. I have to look that up. Anyway, I am giving you sort of a glimpse into what I plan on writing about soon. So look for my new posts regularly.

A Little About Me

I have been tagged with a meme by my friend over at On the Verge

I am supposed to share 6 secrets about me or things that no one knows about me. So, here goes:

1) For some reason, I feel ashamed in my family for loving saurkraut. To everyone else it's odd and it stinks. I once had it on a pizza and loved it.

2) My father has 7 brothers and 8 sisters.

3) I am a huge fan of Frasier. lol

4) I have recorded several karaoke songs on myspace. hee hee

5) I am completely addicted to dropping cards on Entrecard. (This one is good. I am leaving it. lol)

6) As a teen I never missed ONE episode of Beverly Hills 90210

I am not tagging any new bloggers right I need to get some things done. This was SOOOO hard for me. I honestly cannot think of things that no one knows about me. You all know my hair is not totally natural...I thought about putting that. lol You all know I draw and sing......hmmmmm I don't know. This was hard! haha

Biopsy Surgery was Bad.....Port Surgery?

Well, my port surgery in itself was not bad. Port surgery is so hard to explain. I had no idea what it even was before I had it done. I am including a picture of the port itself. I had to be put to sleep to have it done. It was only a 30 minute surgery. They woke me up by literally pulling me out of bed and dragging me to the bathroom. I was so out of it. I was bandaged for awhile but when the bandages were off I had a hard lump in my chest with a tube you can totally feel going up and then disappearing somewhere inside. The tube went into a vein...this distributed the chemo without lots of pokes into the veins in my arms. The needle wasn't exactly small. It had to penetrate the plastic port in my chest. I was always told to take a deep breath and they'd push it in. It was never a pleasant experience but you do get used to it. My nurses could never get my blood to come out of this thing. It's supposed to, but it would never work. My chemo thankfully did go INTO it alright so I didn't have to have that in the arm. I got poked and prodded so much back then. Getting a needle now is just not a big thing to me at all.

Having the port removed was another story. They kept me awake for that. If you go back and read my old posts you can see what I wrote the day it happened. Basically I had a bigger scar there from the original port surgery than the doc thought I should. So he tried to cut away the scar and extra tissue while removing the port thinking it would look better. This scar got so bad and grew all fat. It's not as long as the biopsy scar but it itches more and occasionally gets stabbing pains in it. This happens out of the blue and only on occasion. I won't complain. It's more annoying than anything. I am including pics of the needle and port so you can get an idea of what I mean. I put a picture of the port in my chest in my earlier post about the ugy side of cancer.


I like to get my daughters involved in some extracurricular activites. Last week the high school cheeleaders sent a paper home to my girls saying they could practice for 2 days with the cheerleaders to learn a routine and perform during halftime on Friday's game. My girls BEGGED me to do it so I let them. They'll get a t-shirt and the joy of performing. I hope they don't get stage fright. haha They do think they are so incredibly cool though. I can't wait to watch them peform. I'll make sure to take some pics. Here's a family pic we took this summer. Actually this one is my favorite and we were just talking. I had no idea this shot would be taken and I just loved it.

Sunday, October 12, 2008

On a Lighter Note

Since my last post was so very serious I thought I'd add a little bit of cuteness for today. I have saved this outfit since my last daughter who is now 6. I bought this when I sold Avon. I don't do it anymore but they did have some cute little outfits come through. I always found this one adorable. I don't really see Blues Clues on anymore. I need to dig out my old videos.

My Gabbi is just about 11 months but this outfit is a 18 to 24 month size. She's a really big girl. haha She's tall, with a big round head and a little bit of chub. I love it all!

My Cancer, Hodgkin's Lymphoma. What Are the Symptoms?

First of all, I don't really think I was the norm. I go through the list of symptoms and I don't know if I had many if any. Also called Hodgkin Disease, was named after Dr. Thomas Hodgkin, who recognized it in 1832. It is not to be confused with non-Hodgkin's which is not the same thing. The lymph system is made up of lymphoid tissue, lymph vessels, and a clear fluid called lymph. According to the American Cancer Society: Lymphatic tissue includes the lymph nodes and other organs that are part of the body’s immune and blood-forming systems. Lymph nodes are small, bean-shaped organs found in many places throughout the body. Other parts of the lymphatic system include the spleen, the bone marrow, and the thymus gland.

The lymph nodes make and store lymphocytes, which are special white blood cells that fight infection. There are 2 types of lymphocytes: B lymphocytes (or B cells) and T lymphocytes (or T cells). Most cases of Hodgkin disease start in B lymphocytes.

Most often it starts in the upper part of the body such as the chest and neck or under the arms. Hodgkin disease can spread through the lymphatic vessels in a stepwise fashion from lymph node to lymph node. Rarely, and late in the disease, it gets into the blood vessels and can then spread to almost any other place in the body.

The cancer cells in Hodgkin disease are unique. They are called Reed-Sternberg cells (or Hodgkin cells). They are an abnormal type of B lymphocyte that is much larger than normal lymphocytes.

The 2 main types are classical Hodgkin disease (which has several subtypes) and nodular lymphocyte predominance Hodgkin disease. The types differ in the way the cancer cells look under a microscope. The types are important because each grows and spreads in a different way. Often they are treated differently. Ask your doctor about the exact type of Hodgkin disease you (or your loved one) has. All types of Hodgkin disease are cancerous (malignant) because as they grow they may compress, invade, and destroy normal tissue and spread to other tissues. Hodgkin disease occurs in both children and adults.

Back to the symptoms. Typically you'll hear this:

Drenching Night Sweats
Frequent Fever that comes and goes
Itchy Palms and Feet
Lump under the skin

You may notice a lump in the neck, under the arm, or in the groin. Sometimes this may go away, only to come back. Although it doesn't hurt, it may finally not go away, and lead you to see a doctor.

I never had a night sweat. I only once had a fever of about 99.9 that was unexplained. It was not long before I was diagnosed. I don't remember having itchy palms and feet. From what I hear, this itchiness is extreme and hard to relieve. Some people feel like they are just crazy.

I had a lump or pressure in my throat. That wasn't really how it started. I remember oddly enough the very first ever time I felt a fullness in my chest. I was driving. I felt a sort of odd sensation in my chest followed by a full sort of feeling. I can't properly explain it. I remember it was odd but it was followed by pressure and it never went away. I remember thinking what if I have cancer, immediately followed by me thinking I was crazy and then letting it go. I saw a regular doc for a regular checkup when he found a thyroid nodule. I figured that was what caused my pressure and let it go at that. I had sonograms on my thyroid but every single day almost this pressure was feeling worse. I felt like someone was squeezing on my neck and it was very uncomfortable. I found out later that even my family thought it was in my head! I am not one to rush to the doctor. I don't get crazy about myself being sick. I do worry about my kids, but not me really. Anyway, I also developed wheezing. It was on the exhale and my breathing was getting a little more labored. It was way worse late at night and when I was lying down. I had tests on my thyroid, saw endocrinologists, Ear Nose and Throat specialists and my gynecologist even sent me in for tests. I let this go on for four years.

My husband had to move for his job. The move was very hard on me physically. I was a couple of weeks pregnant while moving and didn't know it. I was so tired, wheezing, coughing and having a very hard time breathing. I felt lazy and didn't know what was wrong with me. We officially moved out in April and by the end of that month I couldn't get out of bed. I had to see doctors to find out what was wrong and it was hard. I had the fine needle biopsy on my throat. I mentioned it before. I definitely have to save the details of that procedure for another day. I have had that done twice. The second time with no anesthesia. I had this camera shoved up my nose on a long tube and down my throat too. I had that done twice. They charge me about $200 just for that tube up my nose not counting the numbing spray, the doctor, and all the other things they did just to tell me I was ok.

Regardless, the endocrinologist did schedule the MRI and finally found the tumor. By the time we had those results back (which was only about a week) I could not lie flat at ALL for an MRI. So we couldn't do any more testing. The doctor said it would be pointless to do one after chemo began because it wouldn't be accurate and the treatment was the same. I want to know what stage I was but I don't think I'll ever know for sure. I know it was considered bulky and that automatically puts me at stage II. We just don't know how much it spread without the full body MRI. I suppose it doesn't matter since I am in remission. Still, I am going to discuss with my doc when I see him again just exactly what stage HE considered me. I don't know what to tell people who ask. Especially those who have had cancer as well.

So, I guess my point of this post is to inform. I want to help anyone else who is going through this cancer. I want to inform those who are looking for information and to know my experience. I do remember something I read a few times about drinking alcohol causing pain in the tumor area. I have had some wine and it never caused me pain. I may have felt more pressure though and I specifically remember after having a glass of wine, the next day I coughed up a little blood. I did that more than once though. I was pretty scared when that happened as I was still undiagnosed.

Hmmm I just found something new myself. I discovered this on the American Cancer Society site.

Overview: Hodgkin Disease
After the Tests: Staging

Staging is the process of finding out how far the cancer has spread. This is very important because the treatment and the outlook for recovery depend on the stage of the cancer.

Hodgkin disease most often starts in one set of lymph nodes and then spreads to a nearby set without skipping areas, at least until late in the disease. Growth into nearby organs can sometimes happen too. The current staging system is based on these facts.

If a biopsy has confirmed that Hodgkin disease is present, the next step is clinical staging. This includes taking a medical history, doing a physical exam, and then doing imaging studies.

Imaging Tests Used to Stage Hodgkin Disease

One or more of the following tests may be used to help determine the extent of the Hodgkin disease in the body.

Chest X-ray

Hodgkin disease often causes swelling of lymph nodes in the chest which can usually be seen on a plain chest x-ray.

Computed Tomography (CT)

This test gives your doctor a better look at lymph nodes in the chest, abdomen, and pelvis, as well as other organs. The CT scan is like an x-ray but instead of taking one picture like an x-ray, a CT scanner takes many pictures as it rotates around the patient. A computer combines these pictures into an image of a "slice" of the body.

Often after the first set of pictures is taken, you or your child will get an injection of a contrast dye, or you may also be asked to drink a liquid of contrast material. This helps better outline structures in the body. A second set of CT scan pictures is then taken. Some people are allergic to the dye and get hives or a flushed feeling or, rarely, have more serious reactions like trouble breathing and low blood pressure. Be sure to tell the doctor if you or your child has ever had a reaction to any contrast material used for x-rays.

CT scans take longer than regular x-rays. You need to lie still on a table while they are being done. You might feel a bit confined by the ring you have to lie in when the pictures are being taken.

Magnetic Resonance Imaging (MRI)

This test is rarely used in Hodgkin disease, but if your doctor is concerned about spread to the spinal cord or brain, MRI is very useful for looking at these areas. MRI scans use radio waves and strong magnets instead of x-rays. MRI scans take longer than CT scans -- often up to an hour. You may have to lie inside a narrow tube, which is confining and can upset people with a fear of enclosed spaces.

Positron Emission Tomography (PET)

PET scans involve injecting a form of sugar that contains a small amount of radioactivity into the blood. This sugar collects in the cancer cells. A special camera can then detect the radioactivity and show the areas of cancer in the body. PET scans can help tell if an enlarged lymph node contains Hodgkin disease or is benign. Recently, newer devices have been developed that combine the PET scan with a CT scan. PET/CT scans can help pinpoint the exact location of the lymphoma.

Gallium Scan

During this test, a small dose of radioactive gallium is injected into a vein. It goes to lymph tissue in the body. A few days later a special camera is used to find the gallium. This test can find tumors that might be Hodgkin disease in lymph nodes and other organs.

The gallium scan can be useful in finding lymphoma that the PET scan may miss. It can also tell the difference between infections and lymphomas.

Other Tests

Blood Tests

Blood tests aren't used to stage Hodgkin disease, but they may be useful in getting a sense of how advanced the disease is and how well a person might withstand certain treatments. Hodgkin disease cells do not appear in the blood, but a complete blood count (CBC) can sometimes show signs of the disease. A shortage of red blood cells (anemia) can be a sign of more advanced Hodgkin disease. A high white blood cell count is another sign, although it can also be caused by infections. Blood tests of liver function might also point to Hodgkin disease in that organ.

Bone Marrow Biopsy and Aspiration

Tests of the bone marrow (a bone marrow biopsy) may be done to tell if Hodgkin disease is in the marrow. To do the test, a long thin needle is used to remove small bits of bone marrow. A piece of bone might also be removed with a thicker needle. The 2 samples are usually taken at the same time from the back of the hip bone. The area is numbed first. But even with the numbing, many people feel some pain. The whole process takes only a few minutes.

Ann Arbor Staging System

The staging system for Hodgkin disease is known as the Ann Arbor system. It has 4 stages, labeled with the Roman numerals I, II, III, and IV. The higher the number the more advanced the disease is. If Hodgkin disease affects an organ outside of the lymph system, but is next to a known area of lymph node involvement, the letter "E" is added to the stage. If it involves the spleen, the letter "S" is added.

"Bulky" Disease

This term is used to describe tumors in the chest that are at least 1/3 as wide as the chest or tumors in other areas that are at least 4 inches across. If bulky disease is present the letter "X" is added to the stage. Bulky disease may require more intensive treatment.

So....I know for a fact mine was considered bulky. I had a tumor between the size of a "baseball and a volleyball in my chest" according to my doctor and my charts said bulky. I saw it. I have a small chest, as I am a pretty small person. So, I guess that puts the letter X on my stage. I knew it was bad at the time. I just always hoped it hadn't spread. It kills me to not know for sure.

And here is what scares me folks:

The terms resistant or progressive disease are used when the disease does not go away or keeps on growing while you are first being treated. Recurrent or relapsed disease means that Hodgkin disease responded well to treatment at first and went away, but it has now come back. If Hodgkin disease returns, it may do so in the area of the body where it first started or in another part of the body. This may happen shortly after treatment or years later.

My doctor does NOT think it will return so I hold onto that faith. He knows what he is doing. If it does, I'd fight it same as before. The cure rate for Hodgkin's IS good though.

Stage 5-year relative survival rate
I 90% to 95%
II 90% to 95%
III 80% to 85%
IV About 60% to 70%

You really do not get good statistics like that on too many cancers. That gave me hope through it all too.

It does repeatedly say that the treatment is more intense and the statistics lower if the stage is bulky. That's kinda scary but oh well. I am in remission and I have faith that is where I'll stay. I hope I have clarified some things for some people and hopefully helped out some new people. I feel great and I breathe fine. My neck has never felt 100% like it did before. I have scar tissue and I do have four thyroid nodules in my throat that cause some pressure. I still feel 100% better than I did before with no wheezing or shortness of breath so I am very very thankful. I'll post more on this disease later because I really didn't cover much of it at all! I'll go over the treatments and all that in a later post.