Cancer Really Sucks.

Sharon Russell is one of the greatest ladies I know. She has been my loving step mother, a great friend and a wonderful grand mom to my daughter. A huge part of my life for almost 20 years. Every thanksgiving, Christmas, Easter, birthday was spent together. She was at my wedding before either of us got sick. She was diagnosed with breast cancer a few months before I was diagnosed with lymphoma. Unfortunately her cancer spread to different locations. While she was fighting breast cancer she came to all my surgeries. Supported me each time I was in the hospital. Was at my heart surgery too despite being weak from all of her chemo. So many times we sat together with my dad, both she and I recovering from our chemos. She is amazing. She rocks her no hair, looks so beautiful, has such a glow. 

She is exhausted from the fight. The family, her friends, the world is going to miss this amazing woman who I am so proud to be able to call her my mom for so many years. 

Saddest day of my life.

So I was questioning myself to share the following.... I made this blog to help people and I'm not helping anyone who might be going thru a similar situation if I don't share everything so here it goes. 

This is a weird one and when this happened to me I googled it. Not much out there on this so I might as well. 

When I was first told I had cancer and chemo was needed, my doctor asked me if I ever wanted to have more children. If so I would need to freeze eggs before chemo because the treatments will send me into early menopause. I didn't want to do that since pulling eggs took time and the cancer was already at stage 4 I didn't want to waste time before starting the treatment. So we went ahead and didn't freeze eggs. Despite not being able to have babies anymore I decided to keep my copper IUD in place since I only had it for about 3 years and it didn't feel great going in so I knew it would hurt coming out and I had enough medical crap going on I didn't need to add to it. So it stayed since the doctor said it was ok to keep it in. 

Well as I like to defy all medical reasoning and as they are writing a thick book on me already I figured why not add to the list of crazy ass shit. 

Weeks late for my period I realize the menopause is finally here. About time, it was right after my last chemo. I was having some physically issues like my boobs were popping out of my bra fast and they were so sore it was time to call the dr and see if they could do something to stop this crap. They said they could give me something but I needed to confirm I was not pregnant. We all laughed at that as I was still on chemo and the iud and the menopause there was no way but we have to mark the chart that one was taken and negative. WELL...

Two positive tests later I went to the obgyn. Pregnant with non identical twins. 

Yeah that happened. Non identical... Somehow I released two good eggs??? With enough chemicals in me to kill.. well cancer.. How in the hell that that happen? Once again the doctors look at me and say "well we have never seen that before". I'm getting sick of hearing those words. Negative percent chance of this occurring and of course it happens to me. Now after cancer and heart surgery and hardly shedding a tear, this made my cry for days. Sadly the babies were conceived in between chemos and I had a CT scan not knowing I was pregnant. Devastating. I lost them. 

Finding out then losing them within days was a struggle and since none of the drs or nurses could believe this happened I tried to find anything or anyone online that had a similar situation. I found nothing. I have never felt more alone and more like a freak of nature. So for that reason I wanted to put this out there just in case someone googles "pregnancy with IUD" or "pregnancy during cancer or chemo treatments". Nothing could have prepared me for this. I would have rather had another heart surgery then to have had two innocent lives end. They were adorable though. Two cute little beans on the sonogram. Saddest day of my life. 

Blood thinners are fun

Ok they are not really, I was kidding.

So I have not updated in a while and people have been asking...
Lets see since my last post I had my Iron levels drop to 2, took a month and 4 hour long infusions to get that level up to "low" instead of "none". I have had two chemos despite my bitching about not wanting anymore and in-between those I went to Mexico which was awesome. Got to show off my scar, but no one noticed I was rocking one as I was getting an all over tan. :) I swam my butt of in the ocean which felt so good, up until the trip I was not allowed to use my arm and chest muscles so that was a huge step in the right direction.

The blood thinner thing sucks. Was on a pill that normal people take one of and that gets their blood thin enough, however I am some medical freak of nature and I was at 7-8 pills a day and my INR was still showing 1.4, I hate taking any pills so I was totally done with that. I have yet to serve my 6 months of therapeutic blood levels so my heart wall thins out where they removed that thing, so I opted for the self injection method of some wonderful medicine that actually works for me and now I have lovely poke marks on my belly. Its totally sexy. :) But I get to eat spinach, salad and blueberries now so its totally worth it.

I had another CT scan, the tumors are still there and not shrinking HOWEVER we cant tell if they are just scaring OR actual cancer. So I will get a PET scan to confirm later in September, but if they match my last PET scan the cancer should still be gone. Fingers crossed.

CHEMO IS OVER for now. I have three more treatments but its follow up infusions that attack the cancer tumors themselves and not all of my good cells too, so that's a plus. My hair is growing like crazy, waiting to be able to style it again, I love that awkward point that its not even worth trying to make it look good. Ha.

So all this great stuff is really bitter sweet to me, I have no interest in celebrating my success. I have a step mom with cancer everywhere, they have changed her treatments in hopes something starts working, she has been battling for years. My Aunt Connie was just diagnosed with breast cancer and just had her first chemo, she is rocking a shaved head like a rock star, just beautiful.

This crap has got to be cured.

xoxoxo

Oh yeah baby! I'm back!

Four weeks as of tonight! Feeling great! The Dressler's syndrome that sent me to the er last Tuesday is much better. Just left the surgeons office and he has cleared me to work, travel, RUN, drive!!!!!!! Oh yeah baby I am sooo happy right now. I ran down the hall after we left. Ha. No holding me back now. Will finish chemo after we return from Mexico late July. Xoxoxo

I just want to go back to work.

Tired of sitting and waiting. Tired of dr appts and nurse visits. I want to be normal.
However I am having a blast visiting with everyone. And breakfast with dad each morning. :)

Had a set back Tuesday night ended up in the er was insane pain. Dressers syndrome apparently which happens after heart surgeries. I got drugs and they sent me home after many many tests. I was doing so well! Walking a mile here and there. But now I hurt more then before. More X-rays today. I saw my metal rings holding my chest together, that was fun. And everyone wants to see my scar which they say "wow looks good" not sure if they are talking about by scar or my boobs, either way its fun. I just want to be back at work. :)
Back to work after Memorial Day.
Chemo after the Mexico trip in July.

ICU was fun.

I hated the first icu. Not the smartest or nicest nurses in there. Some X-ray tech came in to do a chest X-ray around 1am. Sat me up all the way in the bed and made the bed hard, so it was fully inflated felt like concrete. Took the X-rays then laid me flat down (something you can't do to heart surgery patients) and she didn't make bed soft afterwards. So for 20 minutes I cried and yelled help with no response. I could not find my nurse button, could not move to look for it and the hard bed was pulling apart my chest as I laid flat on my back struggling to breathe. Finally some man ran by and I yelled as loud as I could. He popped his head in and said "did you say something ?" Apparently my loud screams were whispers. I said make my bed soft please. He did and I passed out. Worst experience of my life.
Until the 4 am sponge bath with cold water and an ugly nurse. That sucked. Then some woman walked in to take me for a walk to test my heart. This was at 730 am my surgery ended the evening before at 630 pm. This woman is crazy I'm not walking anywhere. I can't even sit up. So she prepped me despite me telling her I was not walking. I'm couldn't stay awake and my new nice icu nurse was there to take me to the other icu area. Determined this lady organized all my cords, machines and tubes that were connected to me and sat me in a chair trying to talk me into walking the halls. I kept falling asleep. After about 30 minutes she decided to take my blood pressure. 88/45 I was not walking anywhere. Ha. I win again. But really who thinks a heart patient about 12 hours after surgery is going to walk laps in the halls so she can get active heart readings??? Really?

The nice icu nurse that was laughing to herself while all that went down then she took me and all was good after that. I was happy. I thanked her. She laughed and said she was not going to make me walk around until I was ready.

Heart surgery patients gone wild!

So the scope never happened. I was wheeled down to that department and as I came in the call came thru that it was canceled and I was headed to straight surgery. So this nice nurse explained to me that heart surgery is very risky and here is what they are going to do to you.....Oh no way lady. I will YouTube this crap later but no way are you telling me now.
I have enough medical training to know most of it but lets not freak out the patient before I go in, goofball.
So I went back up to my room, as the transporters knocked into everything along the way like my bed was some kind of bulldozer. Those guys cracked me up.

So back in my room, most of my family was there with gloomy faces. I kept the jokes going. Alexis looked worried, I could tell they all were but I wasn't. I had the easy part. I was going to sleep.

Many doctors came in that I had never met, telling me it has to come out. I was like great, lets go, I'm ready. I did call my surgeon that has done all my cancer stuff, he works a building away, I consider him my friend. I call him handsome he calls me gorgeous. He came by and talked to us, confirming it needs to come out and that the guy taking it out is amazing and he isn't worried about a thing. This dr is so laid back and has a great way of making everyone feel good. And that's all I needed to hear.
So before I knew it I was being taken again this time for good and who knew what was going to happen. So I continued the faces and jokes as my almost in tears family waved bye and I went thru the double doors. Then I cried but just for a second. Then I was ready.
Once in, they gave me those amazing drugs that make you feel so good and I was out.
Apparently the surgery went well. I'm still here. :) they had to go thru the front of my chest cutting the entire breast bone and leaving me with a beautiful scar. I guess my chest can't be my fav part of my body now... Ha!

Ended up in some icu for after heart surgery. Woke up hearing my family talking. I could not see them but I was so hot and I had some tube in my throat that stopped me from being able to speak and i wanted it out. My first goal was getting these hot blankets off me. So using hand signals I motioned like I was hot acting as if my hand was a fan. Nope they thought I wanted them closer, which made me hotter. So I grabbed the nurses hand and wrote "HOT" on it with my finger. He understood and the blankets came off. Next goal... Getting this thing out of my throat. Apparently being on the heart and lung machine you have to prove you can breathe on your own for a certain amount of time before the tube gets removed and the machine stops breathing for you. As my daughter stood beside me saying mom breathe! I went in and out. So I was breathing then I stopped so she yelled again. That's what I remember most, her yelling "breathe". Then some guy kept telling me to open my eyes. I did dramatically each time he asked but I was tired and didn't want my eyes open. But I could hear him and he was not taking that tube out until I woke up all the way...But I was awake... So the asshole in me pretended to start gaging and just like that he said we have to get this out and like that it was gone. So I was way more awake then they thought as I could think up this amazing plan to get what I wanted. Hahaha. Moral of the story... Don't pull me out of my sleep if you have tubes down my throat.
:)

Good news/bad news. Which do you want first?

I said the bad news. Dr said how about the good news first? I was like, nope I want the bad news first thanks. Of course I got the good news.
Ct scan results are back after todays tests. Still in remission, whoo hoo! Tumors are just about all gone, one in my belly that is at 3cm and that's about it.
Great.
What's the bad news?
Oh there is a golf ball sized blood clot in your heart. And we already have a room waiting for you at the hospital. Head there now.
So there is this golf ball in something that is the size of my fist. Sitting at Siani, admitted and waiting. Laying in a bed that is got air in it so each time I move it inflates and deflates automatically. Annoying as hell.
Got to Siani, a wonderful hospital I might add. People here are awesome. Drs are completely on top of this. And apparently I am interesting and causing all kinds of attention and interest from all the doctors.
So when I arrived I was lead to my private room with a view. Nurses came to whisk me away to get scans. Of course the scan with the huge golf ball was enough to cause a stir so the nurses called the dr in with "you have got to see this".
So they are pretty sure it's a clot and pretty sure it's not fully attached so there are two options.... And tomorrows scope will determine what happens.
Tomorrow I will be put to sleep, a scope down my throat and they will see from the inside what is happening. If its a clot and its attached pretty well to the wall then I will sit here and continue to get blood thinners (which is happening now) then go home and have to give myself injections twice a day for 3 months or so.
But if its loose which is what the scans today seemed to point to then they will have to do open heart surgery to remove it.
But hey my cancer is gone and that's pretty damn cool. :)

It's been a long day. Xoxoxo

Answers tomorrow

sorry for the delay, people keep asking... here is all i have....

Tomorrow, hospital first thing for scans and blood work and dr appt to discuss going forward or stopping. Looking forward to those blood numbers since i have been busy traveling i have missed some blood tests, hopefully things are good. I feel great, not tired or weak, i feel just fine. Actually I have been having a little too much fun ... :)

I have set myself up mentally for this being my last chemo, refusing the actual last one not to mention the follow ups for the next year... no way im doing that. I guess the scans will determine the decision and the call to hopkins. Skipping on the bone marrow thing for now, my friend whos a dr at hopkins says i have time to wait so not to rush it.

chemo Thursday and Friday.... blah.

Remission and Decision

So a few weeks ago I was scanned and had a bone marrow test. Scans showed no active cancer, nodes are shrinking and all the doctors and nurses are so happy. Bone marrow showed no cancer in either side. This is amazing news! To go from stage 4 to remission in 2 treatments is unbelievable. It should have taken at least 6 months to a year. This cancer med study is amazing, the doctors and nurses are calling me all the time getting updates, blood work weekly, constant attention and love from all the Dr's and nurses here. My family, friends, bosses and work family are all so great keeping my attitude in the right place, making life and work fun... so I rocked this just like I rock everything else...with amazing awesomeness. :)

so that whole "too good to be true" thing hits right about now.

NH Follicular Lymphoma almost always returns. Dr's don't have to deal with this often because the people normally getting this type of cancer are 60,70,80 years old, so they die of natural causes  before it can return again. But since I'm 33 this cancer can return 1-2 times before I die. It could come back next year, 5 years, 10 years... no one knows. I have read about young people getting it back 3 times in 6 years after being in remission, and I have read about people that have been in remission for over 20 years with no signs of it returning.

So my Dr and I had a chat. First of all I have to keep going and complete my 6 treatments. I'm sitting thru #4 right now. In 35 more days I get another and 35 after that the last one of this mission.

Then the decision.
Option one. Continue with chemo after the 6th treatment, but this would be every 70 days and would run into Jan 2014. But this only continues the treatment I have been getting to be sure there are no cancer cells hiding and waiting to grow. This option does not cure the cancer forever just treats what I had in hopes it does not return.

Option two. "Hopkins Bone Marrow transplant" After my #6 treatment i would get a dose of chemo 10 times the power i have been receiving. Losing my hair most likely that day, killing just about everything inside of me including my bone marrow. Sitting in Hopkins for 2 weeks waiting for my blood counts to go up. Opening me up to all kinds of issues. Then after my blood counts come back up I would get a bone marrow transplant, from either a donor or my cleaned marrow that would be taken before the insane dose of killer chemo gets delivered.
It was put to me honestly and nicely... "if I don't die from an infection in the hospital in two weeks, I could die from the bleeding out during the transplant and or infection from the surgery not to mention chance for a rejection." The risk of death is somewhat small BUT if I died from something dumb when i could have maybe lived for 20 years cancer free, that would be a huge waste. Plus this option I would be out of commission for 2 months, we ALL know i CANT sit still that long.

I am a great candidate for this option and it would make it so i never get this type of cancer ever again. However the risks of infection and death are a little to high for me and dying this summer is just not in my schedule. I have WAY too much fun to have.

So I am doing option one, chemo until '14. the every 70 days thing is good. If it comes back I will start again and they rethink the bone marrow thing.

I feel amazing, other than being extra sleepy in the morning.  I am working out at the gym, running, traveling, still working and I am managing my chemo brain far better now. Things are good.

So we will keep going with the same.

Sitting here getting chemo now. Dad is reading. Sun is shining. Its going to be a good life, I can feel it. This cancer BS just makes me stronger.
xoxo B

Great chemo day

Day 1 treatment 3
Completed :)
3 doses of Benadryl no allergic reaction this time from chemo. Very happy about that. They had it dripping at 400 which is great and I got done faster. Home by 430. :)
Dad and Becky were great company, loved having them visit!
Feeling great tonight!
Happy valentines day ❤❤❤

Amazing news!

I had my pet/ct scans this morning. Dr just called with the report! The tumors are shrinking! The largest one was 14.1cm is now down to 2.7 cm. the others are smaller as well. The cancer looks inactive is most of the nodes! Dr was so excited and shocked how quickly I'm responding to this treatment. Apparently I am amazing. :)
Words can not explain how excited I am right now. Wow, huge sigh of relief.
Chemo Thursday and Friday. Then hopefully with all these amazing results I can stop chemo soon. Fingers crossed.
Xoxoxoxoxo

Rocking this!

I am SOOO rocking this chemo thing now. I feel totally normal, I have all my strength back, I feel amazing. I even look normal. :) And my hair is growing really fast so I assume its here to stay.
Started working out again, and it feels so good. Im thinking a super cute bikini might be a nice purchase soon, come on summer!
February should be awesome, more scans on 2/11 to see if the tumors are shrinking, bone marrow to see if its out of my bones yet (fingers crossed) then chemo on Valentines day. <3

Recovery weekend

Did ok this weekend, nothing like last month. Everything is annoying me though, so nothing new. Ha! Back in hospital this am getting fluids. That's about it. Well if this is all there is I think I will be just fine. However stuff smells funny and that's making me nuts. I just want to get back to work.

Treatment 2 day 1/2 done!

Hi everyone!!!
First I want to thank everyone for all their posts, phone calls, emails and texts. I can't express how awesome I feel when I read these posts you all leave. I have the greatest family, friends and co workers. All my guys at work have been sending me such sweet messages. I'm on so many prayer lists. You are rock! And if it was not for you I would not be as happy as I am as I get thru this. So thank you!!

Good but long day. Had another allergic reaction which slowed things down some and blood work took forever this am so we are here late. But chemo went really well and I'm just finishing the second chemo now! My chemo bear, Bear, was a great addition for cuddling (thanks Alexis!) and my dad and Michael sat here all day to keep me company. And once again the nurses and doctor here are so much fun! I'm a lucky girl.
Chemo tomorrow. Starts at 2 pm. Should be an easy one. Xoxoxo

It's starting...

So last night I realized that I'm not bothered by my port anymore. I don't mind laying on it now, it's sort of a part of me now. Hmm.

Holidays were good, Alexis' boyfriend Guillem came in from Spain to surprise her for Christmas, that was fun and we all enjoyed his visit.  I was able to see most of the family, so it was a Christmas. I have been sick since New Year's Eve, and today I am in the hospital for blood work. It's really nice here, everyone is so kind.

So it started. Every morning since chemo started I do my daily "hair check", I just run my fingers thru my hair with a little pull, every morning I see nothing in my hands and then I do the sign of relief.
This morning there were about 20 hairs... So it's starting. Chemo one week from today.
Happy new year xoxox