OK What About Disappearing Readers?

 

This is even MORE scary! I noticed the past week that my readers went from 313 to 311!! :( I hope I am not boring anyone to tears out there with my blog. Ok I'm not really that worried. I figure if you leave than apparently I wasn't interesting enough for you, but that's ok because I'm not changing anytime soon. I do miss you and hope you stick around to hear what I have to say, but I have to write about what I write about.

My blog isn't always about cancer anymore. It's about my life going on. I started this blog to get out what I was feeling. I needed a place to vent my fears and frustrations. Now this blog is about where my life is going after cancer and how my daughter is growing up after having been what I call a "chemo baby". She's healthy and I'm sure that someone out there who is going through cancer now and maybe having to have chemo or faced with the thought is terrified. My point is to give comfort or hope to that person while at the same time just living my life.

Speaking of which my husband's birthday is on Sunday. I am trying to get a party together for him AND manage to study for my Community test and write my big senior paper as well. I also need to clean this house etc. I am realizing I am running low on time. So...what do I do? I blog!!! :)

I will never learn.

Blogging

Well school is back in full swing. I am enjoying this year much more than last so far. I know this year will change a lot as time goes by. I have Pediatrics the first 8 weeks of this semester. My second semester will be OB. Both of those sound good to me. Honestly this is when having kids actually benefits you. I am absolutely comfortable with it all. I can't count how many diapers I have changed. I have read baby books with each pregnancy because I like to know what is going on. I read What to Expect When You're Expecting which is a great book!

I hate that I have a story to contribute to most bad subjects though. My first daughter was by far the easiest. I thought it was going to stay that way until my second daughter turned 1. She started fainting. It's not uncommon actually. Scary things can happen. Having kids isn't all sunshine and roses. I learned first hand and the hard way. I wish things had been simple but they weren't. Right before my second daughter turned 1 I found out I was pregnant again. Yeah it was a shock and no we weren't trying. I was about 9 weeks along when I knew something wasn't right unexpectedly. I had just been to the doctor a few days earlier and had actually seen the little heartbeat on the sonogram machine. It wasn't loud enough to hear, but you could see the flutter.

About 2 days later I went back and found out my baby was gone. He had died due to chromosomal abnormalities. I know all of this because I had chosen to have tests run. I was terrified it was my fault. That is a very common reaction. I wondered about everything from the ibuprofen I took to the face wash I used. You do get paranoid. There was nothing I did though. It was a very difficult time. Shortly after is when Mikayla suddenly began passing out when she got hurt or scared. If I yelled no she was down for the count. We ran an EEG and a study that involved a lot of electrodes on her head.  In the end though it was because she had a difficult time catching her breath when scared or hurt. She no longer passes out but still has difficulty sometimes catching her breath. She's 10 now. She grew out of it. We were talking about this in Peds the other day. It just made me think about it.

Then I found out I was pregnant again. Yes yet another one and I was scared to death. I had what is called an AFP or Triple Marker test at 16 weeks. I wasn't told it was an optional test, or that they have a high false positive rate. So when my came back positive I was scared even more. I had just lost a baby, and the baby I DID have was fainting and now I was pregnant again and told the baby may be higher risk for Down's or neural tube defects. Ugh. Well after a mentally draining pregnancy she was born perfectly healthy.

Does it end there? No. Angelina was about 1 week old when I noticed a tiny pin head sized bright red dot on her bottom lip. It was a strawberry hemangioma and that sucker grew like mad. I was really scared until I learned more about it. Well actually that didn't help a lot either. Those things can grow large and disfiguring. We put her on oral steroids at 3 months of age when it was just looking ready to burst. I started documenting it early:

The prednisone worked. She didn't have to use it for too long either. We are considering laser surgery to remove the remaining color from her lip. It's still a little fat but not bad at all. They do go away with age usually but the problem is if they are growing rapidly and in a place that could disfigure or even kill, such as an airway. Here is my beautiful red head now:

You really can't tell. Of course we all know it didn't end there. I got pregnant yet again in 2007 very unexpectedly since I had been taking birth control. Long story short I was only off of it 3 weeks. lol Then I knew I was sick too and that is where the cancer story comes in.

So the next time someone wonders why I am overprotective mom, well think about it for a couple of seconds. Yes I am over protective. Yes I worry a lot. It is what it is. I doubt it will ever change! I just hope my experiences will be something I can use to help others in life. I wish someone could have told me about what was going on with Angelina's lip. I wish someone could have told me it wasn't my fault I lost the baby before I stressed out like I did. I wish that I had known my baby could live even if I had chemo and you know that wish did come true with Hope For Two. 

I could go on. I have led an interesting life to say the least. Now I'm back at school and will graduate in 2011! So I am pretty excited. I have come a long way. I figure these life experiences are for a reason right?

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!

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 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.

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!