Michael C. Hall Stands Up

He Has "My" Cancer

For cancer survivors out there, do you ever think that? Or if you are currently battling the disease and hear that someone else has that same cancer, do you think to yourself that now you share something with that person?

I just read that former "Survivor: Africa" winner Ethan Zhon has Hodgkin's Disease. Maybe it's because really Hodgkin's is a rare cancer that I feel that way each time I see someone else who has fought it, or who is newly diagnosed with it. I just think to myself that they have my cancer. Not that I want ownership over something like this! It's just a battle that I know well and one close to my heart.

I admit, I never watched Survivor. But I do sympathize with anyone who has to go through anything remotely similar to what I did. He has different treatments than me. They stated he must go through three months of radiation. I had 12 chemo treatments and one month of radiation. I am not sure if it said he has to have chemo or not. I did read that his specific Hodgkin's is called CD20-positive Hodgkin's lymphoma. I will be honest. I have no idea at all what that means. I forgot again to ask my doctor what stage I was. I hate not knowing!!! It drives me mad. I want to know. I want the exact name, stage and all of that though I doubt we'll ever have any definite answers since I couldn't get a full body scan. I will have to remember to ask the next time. That isn't until August. I hope I remember.

I am wishing this young man well. Hope he gets better fast. Then he can say he is TRULY a Survivor indeed.

Is It Almost May 8th Already??

Yes it is. As a matter of fact it is Friday. My appointment is that day. It will be a long day. I start at 11:00 a.m. with the ECHO I believe...then the CAT scan at 12:00. I may have it backwards. I wrote it down somewhere! Then I see my oncologist at 2:00. So yes it will be a very long day. I have to get my blood drawn, all the lab work etc. Then of course it's time to parade Gabriella around the oncology office. They love her and she has gotten so incredibly big. She's really starting to walk now. She's a late walker as I have stated before, but I really blame myself for that. I have spoiled and/or babied her so bad.

This is the time I usually get paranoid about my appointments. I have experienced nightmares in the past, constant fear of it recurring. I have to admit I haven't been to bad this time around. I absolutely DO have pressure in my neck but I am almost at the point where I think this may be my new normal. I hate it. I do also have to take into consideration that I do have thyroid nodules in there that contribute to that lump in my throat feeling. It's not like it used to be. I remind myself I can breathe. I am not wheezing. It doesn't hurt to breath. I can brush my hair without my face turning red and the veins bulging out of my neck. I have to take into consideration that it really is nothing like it used to be. I guess so far, I am doing ok. After the CAT scan I may be better or worse. haha Depending on what they find. Hopefully all looks good and I can really really feel in remission and relax. I mean I have been in remission now for a year and 3 months. Yet there is never that feeling of being free from cancer. You always have that little fear that it will come back. Then you worry because you know treatment is harder the second time around...and your risks go up. So I would just rather not deal with all that.

I appreciate thoughts and prayers that all will be well. I also hope that this week is not a LOOOONG one. ;)

The Confusion With Doctors Appointments and Thieving Credit Card Companies

It's confusing because not everything I have to get done is with the same doctor! I was scheduled for my regular follow up with my regular doctor. OK. That seems easy enough but then he also scheduled me for a CAT scan and an ECHO. Each of those were with other doctors. So when they called to reschedule my appointment I just assumed the date was rescheduled no trouble. Now that I sit here and ponder it, the more I realize they probably just changed my oncology appointment and not the tests. So I am going to have to call today. I also need to call my credit card company. You wouldn't believe (or maybe you would) what they are doing to me. I paid them with a cashier's check. They are saying they didn't get it yet I have the cashed copy of the check. My bank found it and has given it to us and we faxed copies of all the paperwork to them. I have called them. I cannot understand anyone I talk to. I am terrible understanding accents. It's a flaw in myself but knowing that does me no good. I am forwarded from person to person to person on the phone that I can not understand. Then they hung up on me! So I keep e-mailing them from my online account and there only response is that I need to call!

How Rare Is It Really?

According to www.cancer.gov there were about 8,220 cases of Hodgkin's Diagnosed in 2008. Of those 1,350 died. That's so scary to me because while most did NOT die, there were still well over 1,000 that did. It's terrifying but this is cancer. Hodgkin's is definitely rare. Compare 8,220 new cases in the USA last year to 182,460 new cases of breast cancer in 2008. There were 40,480 deaths. Now think of the risks of Hodgkin's in Pregnancy. So very low. I have read the risk of cancer in pregnancy is around 1 in 1000. This is cancer in general during pregnancy. My guess is it's much lower for Hodgkin's. Here is the ironic thing. Not only was I paired up with a woman who had Hodgkin's during her pregnancy through the Pregnant With Cancer Network but I have since found through blogging and Facebook two more women who had the same thing happen. One of them is healthy and well like myself and the other is currently undergoing a stem cell transplant. I have kept up with her procedures through Facebook but you cannot help but ask yourself why? Why is she having such trouble? I pray for her full recovery and that this transplant will cure her eventually. It's hard but honestly if you do the research on this you'll see it happens more often than you think. Oh and both women's babies were born healthy!

Yet I was still a very rare case having had chemo in the first trimester. Ask any specialist, doctor, oncologist, OB/GYN and I am willing to bet they have met not one patient who ever had chemo in the first trimester. I am willing to bet they would believe it could not be done. Yet it can be done and my Gabriella is living proof.

Speaking of which, she slept great last night. I do know she has GERD but it never used to wake her up so much. Then I realized another molar is poking through so I am thinking it could have been teething waking her up. I gave her some Motrin last night and she slept like a baby! haha Whoever invented that phrase never had a baby!

Can You Have Chemotherapy While Pregnant?

The answer is yes! You will have people that say no way. You will hear all the terrible things that might possibly happen. Just stop. Breathe. It can be done. It is done much more often than anyone even realizes! The risks of chemotherapy in pregnancy are really mostly unknown. There are possible side effects but there is no study that has been done that can really prove anything for certain.

I read a lot of things that say you must terminate the pregnancy but this is not true. In the right hands you can be successfully treated while pregnant. If you cannot hold off on treatment during the pregnancy which is obviously the first choice, you just need to make sure you find the right oncologist who has some experience. Go to this website: Hope For Two, The Pregnant With Cancer Network. There are survivor stories on there. You can be paired up with a supporter going through the same thing as you. I was paired up with another woman who also had Hodgkin's Lymphoma while pregnant and had chemotherapy. Her daughter at the time was two years old. I cannot begin to tell you the hope it gave me. As my pregnancy progressed and my treatment continued I found more and more positive information out there about women who have been pregnant with cancer. You will get shock and surprise from people who think that you couldn't possible do this without harming the baby but it is done successfully all the time.

I just really want to spread this message because I cannot imagine following the advice of the specialist I saw who thought it was best for me to have a therapeutic abortion based on the unknowns. My life wasn't in danger and there really was no hard core evidence to show we had no hope. I realized we did have hope. In the end my conclusion was that I would fight for me and my baby. I allowed myself to accept the fact that she might not make it, but I knew I had to at least try. I would accept any problems she might have and I would deal with them and love her just as much. I realized quickly that she was doing just fine. She was growing and progressing normally with no trouble at all. I had some preterm contractions at my last two chemotherapy treatments. That is the most significant side effect I had during it all. Now my Gabriella is a healthy 15 month old baby girl.

The point of my blog was always to spread my message, our story. I still see some google searches coming through looking up information on cancer in pregnancy or statistics on this. I want women out there to realize there is absolutely hope. Your baby and YOU can make it through.

Weakened Immune System Post Lymphoma?

I read something recently that said that you can experience a weakened immune system after lymphoma. I read that you need your flu and pneumonia shots and to be more careful about getting sick, etc. I have of course paid attention to this, but have experienced no trouble at all. I am not sure that I will. According to all my blood tests at my oncology office my blood is normal. My doc even went so far to say is that you wouldn't even be able to tell I ever had cancer in my blood work. That's always something good to hear! So I guess not everyone deals with that. I haven't had it too bad this winter but everyone has a sore throat right now. Even I have been fighgting a soore throat. It seems better this morning. I think strep throat, pink eye and some rather nasty stomach bug is making it's rounds in Illinois. So....consider yourself warned!! lol

How Hodgkin's Changed My Chest

I always liked my chest. It was just right. Smooth. I never felt too bony or too heavy. I felt just right. I noticed right before the doctors diagnosed me my chest was a lot more full. You could not see my clavicle on my right side at all, but you could on the left. I found that so odd. Of course it was odd and something my doctor noticed immediately.

So here is a before shot of my chest.


And a couple more





And here are some after shots. First the surgery that started it all. The surgery was May 4th 2007. This was most likely the next day. I stayed in ICU. Remember I was also several weeks pregnant. I am linking this one because it's a bit more graphic. I had staples in my chest and it's a pretty nasty looking cut.

http://img.villagephotos.com/p/2003-7/264760/biopsy.jpg


This is right after my port surgery.




This is a good shot of the port itself



And another angle with biopsy scar and port.



After port removal and marked for radiation:



Now what my chest looks like with port gone and biopsy scar. It's pretty obvious here. I don't mind so much the scar as I do the indention. They had to actually shave off bone to get to the tumor so it dents in pretty good. One day, I hope to maybe fix that somehow. I try to remember they are my war wounds. You can't see it as well but I have a scar from the port that actually looks a little keloided. It grew and got red and puffy..sometimes itches. It's not gigantic or anything but I think I put a little makeup on it for my Halloween outfit. It did a good job covering it I think.

Pink Eye, Sore Throats and Colds, Oh My

Yes these things have been making the rounds at my house. First my daughter Angelina woke up with a swollen, crusted over and closed eyelid. It revealed to be very red once she got it open. We were prescribed drops. The eye began to improve quickly then the other eye became infected. Then Mikayla got the pink eye, from one eye to the next. So far no one else has gotten it, but now we are all, including myself, complaining of sore throats. Even Gabbi has a bad cold. So I guess it's that time of year. I hope we can avoid anything serious. I can deal with a bit of a scratchy throat.

I have done a lot of reading that says having Lymphoma can actually weaken your immune system. So I am not sure but I don't think mine is not as strong. I seem to fight off colds and illness just as well as I ever have. I read something about being more susceptible to catching things but still, I don't feel I have gotten sick more often. I guess being careful is ok regardless, but I really have not seen a change. It's just another one of those things. You never really do know what permanent changes cancer will bring to your own life personally. You can only wait and see.

How It Feels To Be the Caregiver

One thing that used to be a touchy subject for me and my husband, was who my cancer was harder on. Yes it sounds crazy doesn't it? Of course I had it more rough! Or so I always told myself. Yes, I had a terrible time and I was the one lying in bed for a month. I couldn't breathe and with each gasping breath I did take it caused great pain. I couldn't eat without being sick. I couldn't sit up without gagging, coughing, choking. Then my husband made me realize how incredibly difficult it was. I caught him one night watching me while I slept. I just opened my eyes in the middle of the night and there he was sitting on the floor by my bed, staring at me. I felt loved. It wasn't until later I realized he was afraid I would stop breathing in the night. My breathing was loud, wheezing, gasping.

It finally hit me. He asked me "What would you do if you had to listen to your child breathe like that at night, knowing they could die?" I get stressed out and worry when my child gets the flu. How much more would I worry about cancer? I hate stress and worry. It can eat a person alive. That's what it was doing to my husband for a year. He said he watched me sleep a lot. I do know for a fact he would stay up all night long and only take naps when he knew I was awake or that my older daughter was home from school. He was afraid to leave me for a moment. I was carrying his child as well so it didn't help. He drove me to every single appointment. He never missed a single sonogram for the baby. He was at every chemo treatment. I couldn't have done it alone. If I talked like I might not get through or what would he do if I didn't, he'd immediately tell me that was not even an option so I may as well shut up. I chuckle about it because I love it. I love that he gave me no choice!

I spoke earlier about what do you say to a person who is diagnosed with cancer and the truth is all you can do is support them. Tell them you are thinking of them, you love them, or tell them they're strong, you know they can do it, definitely don't ever refer to it as terminal or without hope even if that's what you have really heard. Otherwise there is no right or wrong thing to say. It's hard to be the person that doesn't have cancer. You love someone who is so sick and you feel at a complete loss. You can't save their life though you want to. You feel totally helpless. My husband felt that way. I saw it more clearly after I got better. He once told me that after I was declared in remission he could then have his stroke. I told him he better not dare. We are getting through it together! I think much love and respect needs to be given to those who are losing sleep caring for and worrying over a loved one or friend who is sick. That in itself is painful like a disease. So from a patient I want to give my love, respect and humble adoration for all you caregivers out there who give so much of yourself helping those who need it, when they need it most.

What Do you Say to Someone Diagnosed with Cancer?

It's hard really to know what to say to anyone who has gone through any kind of hardship. You never know what to say and you always feel like it comes out wrong. When I was diagnosed my doctor was very positive about me being cured. I was given the high statistics and I felt pretty good about getting better. The pregnancy was very scary but honestly I tried not to dwell on those thoughts. I stayed positive. I still have no idea how I did it. I did though and I think I could do it again.

I got a lot of comments after my diagnosis but a few stood out. I was on the phone with a family member when she handed the phone to a family friend who pretty much started crying into the phone and saying she'd looked up information on the Internet and it wasn't good. It was so bad. I felt like I had to comfort her. She didn't have the facts right but this was immediately after my diagnosis. I noticed people will treat you like you are already dead. Some people stopped talking to me at all. I knew some were worried because it took a lot out of me. I panted and you could hear me having trouble breathing but I really felt like some people were scared because they thought I was dying. I never looked at myself like I was dying unless others treated me that way.

I really did need to hear from friends and family though. You may think a person diagnosed just wants to be alone but for me that was so far from the truth. I wouldn't take calls if I didn't feel up to it. If I took the call it meant I wanted it...or maybe even needed it. I needed comfort, love, support. It all made a great deal of difference. Most people would call my husband and get updates from him. I would drill him each day about who called and what they said. Knowing that people cared gave me that much more strength. Don't ever talk to someone with cancer like they are dying, or talk down to them like you feel so sorry for them. My hubby did the best thing. He told me I was getting better and that was that. I couldn't say what if. I had no choice in the matter according to him. It always made me chuckle. It also made me stronger.

How I Deal With Not Feeling the Same

I guess I always thought once someone beat cancer they went right on back to feeling just as they used to. I really believed after a year I'd be my usual old self again and really for the most part I am. The talk I had with the doc at my last appointment really opened my eyes about all the pressure I still have in my neck. I must stress it is NOTHING compared to what I felt when I was sick. It doesn't even compare to how I felt for 2 years before I even knew I was sick. I used to feel a lump in there like all day every day. I felt as though someone had their thumbs jammed into either side of my neck and I felt like I was standing on my head all day long. If my hubby hugged me I'd gag and choke and cough. I really should have known something was terribly wrong but I believed the docs insisting it was my thyroid. I felt constantly frustrated that they wouldn't help me. I didn't know what else to do. I figured I had to live with the discomfort.

Back on the subject at hand though. I have pressure in my neck veins. It does feel like the sensation you would get when standing on your head...but just in my veins in my neck. It's hard to explain. It's a fullness and it's annoying. I discussed it with my oncologist and basically since my vein on the side of the tumor was almost totally blocked off, my blood started working it's way around the problem. It's not quite as efficient. I see new little veins sometimes when I sing or talk a lot. I can tell the veins really pop out and so could he. He said it might get better or more likely I'll get used to it. I love to sing and this does cause some problems with it. It's not major but it makes me hold notes a little less long and it also makes me VERY aware of the bulging veins in my neck. I am worried everyone is looking at me thinking that I am straining myself but truly I am not. It's just like that. I also have this thyroid nodule in my neck that you can see. It's not huge or obviously you'd see it in all my pics. You could see it if you met me and I told you where it was. There are so many things I have to get used to. The scars on my chest I think I am finally accepting as a part of me. I wore my Halloween costume and didn't think much of it until my daughter asked if it bothered me. I shrugged and realized that no...it did not bother me. I think that alone is a pretty big step. I can't wait to be totally used to the different pressure in my neck and I remind myself to just be thankful that it's not like it was!

And the Results Are In

It was a long drive. It's almost a four hour drive. I was running a bit behind today. I picked the girls up from school and we started off. We got there and as usual Gabriella is quite the star. Those doctors and nurses watched me go from around 92 pounds, frail and sick to around 127 pounds round and pregnant. Now I am back down around a comfy 102. They saw Gabbi grow from a tiny little baby to a big 11 month old little girl. One of the nurses snatched her right away and started walking her around showing her off. She loved it and was waving at everyone! It was so cute.

Now yes...I know I am making you all wait for the news. haha I have to. The doc came in and I told him about the pressure of course. We discussed this and basically, I do have scar tissue but when my veins got pretty much blocked off from the tumor he said my veins started to reroute or move and the blood flow tried to go other ways. I know our blood will do this, such as in when someone has a stroke. The vessels can find new paths...maybe even create new paths. I am not 100% positive. I do feel pressure but usually when doing things like singing, talking a lot, crying, or anything involving the upper chest area. Doc said I may always have it, I may not and maybe I'll just get used to it. I may just not ever be normal like I used to. Things aren't the same and he did notice the veins in my neck as I always do. I hate them. He felt my lymph nodes, and they were perfect. He said I am so skinny that he'd feel even a slight swelling. hee hee. I tell you, he always talks about how skinny I am. =/ I don't necessarily mind really. haha My blood work came back great. My checkup went perfectly. STILL in remission!!! Thank God! I am really relieved. I started to get worried. This pressure has always been on the back of my mind. If I wear shirts that tie around the neck, I feel it. It's never been like what it was when I was sick. Yet it is there on occasion and it makes me very nervous.
Now to top the day off we decided to go out to dinner at TGI Fridays. I loved it. We haven't gone out to eat in so long. It was so wonderful. Then we stopped later to get gas and some drinks. I saw a breast cancer lottery ticket. All proceeds benefit breast cancer so I thought, I'm gonna do it. I'll buy one. I am feeling lucky. I also felt good that my money would go somewhere good even if I lose, the money goes somewhere good. You match your winning numbers or get a 10 and win all ten prizes. I got a 10!!! I won $25. Yeah! :) I never win on scratch tickets. I am happy, relieved and glad that long drive is over. My next appointment is January 23rd. I'm sure I'll get this way again. I always do. I appreciate so much all the comments and words of support. It's so hard doing this. I know in 5 years I will be considered cured. I have to be in remission for 5 years. So, as of February 2009 it will be just one year. I found badges online for each year of remission. I hope to continue adding badges each year!

Today is the Day!

My third three month follow up is today. I have been in remission since February 2007. I go every 3 months to make sure I still am! I get so nervous around these times and this time has been no exception. I have read you have to be Hodgkin's free for 5 years to be considered *cured*. At this point I am in remission. As I said I still have pressure in my veins but not on a regular basis. I hate that feeling and plan on talking to the doc. I think it may be due to all the scar tissue in my body. I know the tumor was wrapped around the veins going up into my neck. They couldn't remove anything surgically. The doc said I would always have scar tissue in there. He said no x-ray or scan would ever look *normal* for me. That's always nice to know. haha Anyway it's a pretty long drive. About 4 hours one way. So I'll be leaving around 11 a.m. I think for a cancer survivor it's really scary to say "I beat it." It's hard because you just can't believe it and yes you don't want to tempt fate. It sounds so wrong, I know. I am definitely MORE nervous now than I was when I was sick. When you are sick though, you have doctors everywhere helping you, listening to you. You are getting treatment all the time, being checked frequently. Then, all the sudden, it's quiet. You aren't seeing any more doctors. You go every 3 months and in between then, it's just you. It's scary. It definitely takes some getting used to! Since I was pregnant during it all I cannot explain to you how many doctors I had. I was being checked all the time for something! Think of me today! :)

Appointment On Thursday

It's almost here and it's a pretty good thing. I think the anxiety is finally getting to the hubby too. I don't know what it is but I think I start to actually FEEL symptoms the closer I get to the appointments. I really do think at least some of that is in my head so I don't let myself get crazy with worry but it is stressful. We were watching that movie with Harry Connick Jr. last night. I forgot the name of it. He finds a medicine for breast cancer that saves lives. I thought it was wonderful but it still put me in a mood. I get so sad and it reminds me of how I felt. I am thankful for how I feel now! I feel good and that's a wonderful thing.

I enjoy the drive to my doctor. We moved in February a good four hours away. It used to be about an hour and a half. After much debate we decided to not switch doctors. I have been going to him since the beginning and I just trust him. He knows my whole situation from top to bottom and that gives me comfort. My situation was unique so I just didn't feel comfortable switching. I would have, if my appointments were more frequent. I would have no choice with the cost of gas but since it's just every 3 months we decided to do it. I will definitely post an update when I get back! It's a beautiful drive. I hope to get some good pics of the fall leaves. Here's another old pic of Gabbi at birth. She wasn't bad zized for four weeks early. Oh and please don't forget to click the top momma thing every day! I am falling off the top of the list. Just click the top momma banner over on the right and click my pic. Sign up for yourself too. See how long you stay on top!!

The Questions is, What Doesn't Cause Cancer?

I get tired of hearing it. I really do. Every day, something else causes cancer. Or so they say. I have been warned for years about saccharin. Stay away from artificial sweeteners! Then I hear drinks with sugar in it can cause cancer. So, I can't drink anything sweet? Don't even get me started on the whole deodorant thing. I get tired of rumors. I get tired of hearing cell phones cause cancer, diet sodas may cause cancer, and something about air fresheners now. Is it really possibly to avoid all risk? It's not. I quit smoking when I was a young girl. The thought of it disgusts me now but yes I did smoke for a couple of years when I was about 20. The thought of smoking actually hurts. I avoid smoke as much as I can. I actually am not too surprised about air fresheners because they hurt to breathe in when I was sick. Seriously. We had bought a lot of those oil kind. At my worst when I came around them it burned my throat when I breathed in around them. I went around my house pulling them out of the plugs. Then again, it hurt to breathe in dust or to be around the dog too. It's odd. I am not really sure why.

I can't forget cooking meats might cause cancer. I read something about grilling food and nonstick pans too. How are we supposed to realistically avoid these things? I am not going to stop living. I am not going to eat plates of rabbit food every single day. I'll take a vitamin and I'll do my best but I will not stop living.

Of course, my very own cancer treatments can cause cancer. So, especially since they have no clue what causes Hodgkin's it bothers me. I can't avoid what causes it because they don't know. Then again, I suppose there are many cancers like this. I have had people message me about natural remedies and all that. I was much too sick to be helped by anything other than chemo when I had it. I was informed I would not last three weeks. No amount of vegetables would have kept me from dying. I needed that treatment and it worked. I admit I need to improve my diet and I am a strong advocate of trying to eat right but I don't think we can all live our lives based on what new thing is a carcinogen. I honestly ask myself why they tell us what causes cancer. Tell us what DOESN'T because in this day and age it seems like everything causes it. Or maybe that's just me.

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:

Adriamycin
bleomycin
vinblastine
dacarbazine

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.

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

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.

July 2008

I need a new update. It's already July 5th. It's so hard to believe how much time has passed by since this whole thing began. I see some people have come by the blogging looking for info. I am so glad to help people that are going through what I went through. I know the fear and uncertainty. It's so scary. You are not only feeling sick but now you have to worry about that new life growing inside you. It's hard to believe this could have a happy ending but it can and does! Gabriella is now 7 and a half months old! She was 19.5 pounds at her last check up. I can't help but giggle at that. She was 6 lbs 2 oz at birth. I know I have spoiled her but I think I'm gonna forgive myself for it. She's such a precious miracle. I worried about her so much and desperately wanting to make sure she's healthy I never let her cry for a second. haha She gets what she wants fast. I think I am in for a world of trouble for it though. She has us all wrapped around her chubby little finger. She can roll all over the room now. She doesn't crawl but I think this is her version of it. She can sit for awhile and when propped against the couch she can stand for quite awhile. I am proud of her accomplishments. Oh I think it wise to point out she has a milk allergy. I have had her on soy formula since about week 4 of life. She seemed super gassy and fussy especially when straining for a bowel movement. I gave her regular formula once and I will NEVER do it again. Let's just say it was not a pleasant experience. I myself am also doing wonderfully. I had a little cold last week but I think it's finally going away. I hate getting a sore throat. Any wheezing or pain in that area just reminds me of what I went through. I get nervous too at any pressure at all in my neck or chest. I think when I get sick the lymph nodes swell as normal but it causes extra pressure in my throat. I still have that scar tissue in there and thyroid nodules. I want to just feel no pressure ever again. I guess I can't have that though. I have my next follow up on July 9th. We are making a little family trip out of it since the doc is so far away now that we've moved. I still can't imagine seeing any other doctor. He's the best. I will update everyone on how my appointment goes. I think we are scheduling a scan this week. I hope we can do the scan itself closer to home though. I am going to include some new pics of the baby. She's such a big girl! She is also drooling all over the place. I expect that first tooth any day now. If anyone who reads my blog wants some words of encouragment concerning pregnancy, and/or Hodgkin's Lymphoma, please feel free to e-mail me! sandilynn1975@hotmail.com. Put in the subject line something regarding Hodgkin's or pregnancy because otherwise it will get deleted or maybe in the junk folder. I hope I can help even one person. I also uploaded a pic of me singing recently. I love having the breath to sing back!!!