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!

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! :)

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.