Chemo #2

Today I had my second chemo treatment and this time I had the fourth drug. They gave me a test shot in the arm and when they were confident I wouldn't have an allergic reaction they gave me the rest. I'm feeling pretty good! I have a very, very slight nauseous feeling but I think it's because I wasn't drinking enough water. I forgot to bring water with me and I think next time I'll bring a snack because I get really hungry during. I felt exhausted after this treatment and like an idiot decided to go to walmart to pick up a couple things for Jude. By the time we were done my back was killing me. I think partially from walking around but maybe also from the chemo getting in there and doing its thing.

So I've always said, even before I knew about my HL (Hodgkin's Lymphoma) diagnosis, that if I had to go through chemo I'd shave my head before watching my hair slowly fall out but I'm really struggling. Anyone who knows me knows that I love getting my hair done. I love getting it colored and cut and really only trust one person to do it (you are amazing Seniel!) because I LOVE my hair. I'm struggling to just grab the clippers and buzz it off. I know this is stupid compared to what other people have to deal with but for some reason I'm so anxious about it. Maybe cutting my hair will make it feel more real because I still feel like I'm living in a dream. I know the only way to conquer this fear is to just cut it. My oncologist said that usually your hair will start to fall out during your 3rd week of treatment, which is where I'm at now. My hair doesn't even look good right now. It's a brassy blonde with about 2 inches of natural roots. How do I just let go?

Peace. Love. Fuck cancer

Tuesday

Today I had a check up with my oncologist and everything is going well. I asked my doctor why I was only getting the 3 chemo drugs and he let me know there has been a nationwide shortage of the 4th drug but I will be getting it tomorrow. He said that specific drug might not even make much of a difference and can damage the lungs. When I get the PET scan I'll also be doing another lung test to make sure it isn't negatively affecting me.

Sam had his sinuplasty and the procedure went well. He looks miserable though. He was coughing up blood and bleeding from his nose for a while. He's finally resting and comfortable. He'll need to stay home from work tomorrow because he's going to have drainage and won't be able to do physical activity.

So, the other night I needed to take a shower. Normally Sam would help me because I had gotten light headed the last time but he wasn't feeling well. When I was washing up I finally felt where my port is and began to have a little panic attack. I have anxiety disorder so panic attacks are not something new. The thought of the chunk of plastic in me really freaked me out. I know it sounds crazy but touching the triangular peice where the needle goes in made me so uncomfortable. I was able to calm myself down but then I got really light headed. I decided I should probably get out of the shower before it got worse but I almost fell when I was stepping out so I sat down on the floor. All of a sudden I couldn't hear anything but a deafening ringing in my ears. My vision was going in and out and I was completely helpless. I sat there hoping Sam would come find me but knowing that he wouldn't. I was terrified and unable to control my own body. After what seemed like and eternity my vision and hearing came back but I was so freaked out I ended up having another panic attack. The whole ordeal probably lasted 15 or 20 minutes. I found out from the Facebook support group I'm part of that this is something normal which was very relieving. All in all I'm lucky to only have these symptoms and not be in agony like some patients.

Peace. Love. Fuck cancer

Official diagnosis

Today I called the nurse at my oncologist to see if they had my biopsy results and they did. As the doctor suspected I have Hodgkin's Lymphoma. It's nice to finally have the actual diagnosis and be able to know for sure that we are dealing with Hodgkin's.

I went on the internet and started researching treatments for stage IV Hodgkin's Lymphoma because I wanted to see how my plan compared. My doctor has always been so optimistic about everything and assures me that he thinks we can beat this but today for the first time I was really scared. I started reading about how these 4 chemo drugs were the new norm for treatment and I am only receiving 3 of those 4. I think my doctor doesn't want to overload me if it isn't necessary but I'm already at stage IV. I'm just so worried that somehow I'll get worse and possibly die. I don't want to die. I don't want to leave my son without a mother. I read that the survival rate after 5 years is 65%. That number scares the hell out of me.

When Sam got home I talked with him about it and he made me feel a lot better. He reminded me that I need to stay positive and that he is here for me no matter what. I seriously don't know how I'd survive without this man. Just his presence has a way of making my anxieties dissipate.
I can't let the fear of the unknown cripple me. I have to take things day-by-day and remain positive. This is just a chapter in my story. Cancer can not and will not be the end of me. I am a warrior.

Peace. Love. Fuck cancer

haven't posted in days

I haven't posted in a while since my family has been visiting. It was so nice having my dad and sister here and I was sad to see them go. They both plan on coming back soon though. My mom is here now and she's been cooking great food and taking care of Jude.

So it's been a week since my first chemo and I am still doing well. My only symptoms have been the heartburn and sensitive teeth. When I eat something really sweet on something really flavorful my teeth get a pain that radiates in to my jaw. It's weird but totally manageable. I'm so glad I haven't had to deal with some of the extreme symptoms some people have to. I know that things could change with every dose of chemo but staying positive is the most important thing right now.

My next chemo is one week from today and hopefully my husband can be there, He gets a sinuplasty procedure on Tuesday to help with his chronic sinusitis. It is an outpatient procedure and he should be fine to go back to work a day or two after. I really hope this helps him because he has been sick since I met him. It would be such a relief to see him not have to suffer anymore.

I don't really have anything to report so I guess I'll end this post here.

Peace. Love. Fuck cancer

first chemo treatment

Today is the day I finally got to fight back; today I started chemotherapy.. I wasn't nervous at all (actually relieved) and basically got to spend the whole time thanking people for their well-wishes via Facebook on my phone. Everyone has been absolutely amazing and I can't thank my family and friends enough for their support. You are all the reason why I can walk into chemo not feeling alone and afraid but feeling loved and ready to fight! Thank you, thank you, thank you! I love you all!

When I got to the chemo treatment room I picked a blue recliner and my dad was able to sit next to me. It was so nice having him there with me. Having my dad there was definitely a huge reason why I wasn't anxious. The nurse checked my vitals and then cleaned the skin above my port access so she could put in the special needle. It felt like getting a shot so it wasn't too bad at all. First I received some steroids and nausea prevention medicine that took about 10 or 15 minutes to finish. The first chemo drug took about an hour to finish. It instantly gave me heartburn which I'm used to because I've had acid reflux disease since I was 12. I actually even got really hungry towards the end. The second drug is called the red devil because it's bright red (it sometimes turns your pee red or brown. I experienced that this afternoon. Very strange). This one took only a couple minutes and was done manually. The last drug took about 10 or 15 minutes. That was it. My port was flushed out and I got to go home.

It is quite possible that I don't end up feeling nauseous for a few days but I have some medicine I can try. I hope things continue to go smoothly and I can just focus on getting better.

 Here I am during chemo. My dad bought some shirts for me at old navy which have wide necks and will make it easier to access my port. For some reason it looks like I am giving a slight stink eye but I promise I'm not.

Peace. Love. Fuck cancer

monday

Yesterday I didn't post because I was so busy with having my dad and sister here. We ate breakfast at a Mexican restaurant and dinner at a BBQ joint so they could get the Texas experience.

Today I met with my Oncologist and we discussed the findings of my PET scan and the preliminary results of my biopsy. He said there was cancer in several places including my L3, chest, spleen and a few other spots. This means my cancer is at stage four. He assured me that this was not like with other cancers where stages are about severity. With Hodgkin's stages tell more about where you have the cancer. Because I have cancer in many spots including in the bone, I am stage four. He said the cancer is still curable and not to be concerned with stages. He said based off the preliminary results of the biopsy they still think it's Hodgkin's Lymphoma but again we won't know for certain until all the tests are finished.

My doctor also said I'm ready for chemo. I start Wednesday. Everything is happening so fast I still don't think I can quite wrap my head around it. Just a few weeks ago I thought I was fine and now all of a sudden I'm about to start chemotherapy to treat stage IV Hodgkin's Lymphoma. I will be getting chemo every other week for six months. After a few sessions I'll get a PET scan to check the progress and if things aren't working we'll adjust the chemo drugs. I'm feeling confident about everything and am not nervous about starting the chemo. I just want this cancer out of me. I want to kick this ugly fuckers ass!

Peace. Love. Fuck cancer

Post biopsy day

I was unable to post yesterday because I was so exhausted and out of it after surgery. Everything went well and it was an overall easy day. A nurse brought Sam and I back to a pre-op room and they had me change into a hospital gown. I had to give a urine sample and some more blood. I got a total of 4 bracelets for identification and to list my allergy, I got another new pair of hospital socks as well! We had to wait a while before I was brought back so Sam and I watched some TV. I was so hungry I wasn't really able to feel too nervous. We met the Anesthesiologist, anesthesia assistant, OR nurse and the doctor performing the surgery. I think it was nice for Sam to be able to meet the doctor and ask some questions before I was taken away.

Once in the OR I moved on to an operating table and then all of a sudden I was waking up in post-op. It was so nice not having to be awake during this procedure like I was for all the rest. The doctor came by and said everything went great and they didn't end up having to go in as deep as they thought. Sam came back and helped me get dressed. He signed some paperwork and got my post-op care instructions. I was feeling pretty dizzy and weird so Sam brought me right home and then he went to pick up my meds and some ice cream and gelato. My throat is so sore from the breathing tube it feels like I have strep.

Sam has been taking such good care of me and I am so grateful to have such an incredible man. Any time I need anything he is right there. He has been cooking, cleaning, taking care of Jude and doing laundry all morning. My dad and Amber will be here later and it will be a huge help. I can't wait to see them!

Peace. Love. Fuck cancer

Pre-biopsy day

Today I got an Echo and took a Pulmonary test. The Echo test was easy. I just got to lie there while a technician took ultrasound images of my heart. I moved on to the pulmonary test which consisted of me sitting in what reminded me of the tube at bank drive throughs. You put the canister in and a door slides over it and it's sucked up. I had to do a bunch of crazy deep breathing and blowing out and hyperventilating. It was crazy but the technician was really funny and definitely made sure the experience wasn't as strenuous as it could have been.

Tomorrow I get the biopsy surgery. I've never had full anesthesia before so I'm a little nervous. Sam has the day off so he can be with me which is a huge comfort for me. I know I'm stronger when he's by my side. I've had a bit of congestion and a runny nose today. I think it's just allergies but I'm kind of worried it'll effect my surgery tomorrow.

My brother started a GoFundMe page to raise money to help us and I cannot begin to thank everyone who has donated enough. I am incredibly lucky to have so many people who care. As a young family money was already tight and having all these medical bills is already taking its toll. I can only imagine how many more bills well have throughout my journey. Every little bit of money helps assure our son will be fed, happy and healthy and I can get the care I need. Thank you thank you thank you all so much!

Peace. Love. Fuck cancer

Post port day

Last night was a real struggle. I could not find a comfortable way to sleep. Any position that didn't upset the port site made my back hurt. I probably only got 3 hours of sleep total. I hope I can find some comfortable way to sleep soon because I can tell my body is getting drained.

Today I met with a Cardio thoracic surgeon to discuss getting a biopsy surgery on Friday. The plan so far is to put me to sleep, cut in to my throat below the windpipe and get a chunk of lymph node from deeper within my chest. The doctor said he'd be going over my PET scan results to make sure this was our only option. He explained that there could be an easier lymph node to access but he didn't see any on my CT scan.

My surgery yesterday cost $311 which was basically all the money we had in our account. They made me pay it all right then and I basically had to choose between getting the procedure done and buying groceries. I'm really hoping that I won't have to pay again on Friday because we really don't have the money. Sam has missed work to be with me and has to miss work Friday to take care of me post surgery. We already live paycheck to paycheck and now I've got all these extra medical expenses.

On a brighter note my hospital sock collection is growing. They give me these socks that say xxl but there is no way. I get that I have pretty giant feet but there are definitely people with much bigger feet than mine. I also got one of those very stylish rubber bracelets (like a livestrong) that let's people know I have a power port. I basically live in PJ'S and yoga pants so I'm pretty much the sexiest thing on the block.

Peace. Love. Fuck cancer

Port day

I JUST WROTE THIS WHOLE POST ON MY PHONE, PRESSED PUBLISH AND THE APP CRASHED!!!! UGH!!!! So here it goes AGAIN

Today I had the port surgery. Everything went well. After getting brought back to a room they asked for a urine sample. Only thing is they also told me not to eat or drink after midnight before the procedure so needless to say they didn't get any peepee from me. They said it wasn't a big deal because they'd also be taking blood. Yay. I had to change into a very beautiful and stylish hospital gown that left a nice big opening for my butt to be free, I was able to watch The Price Is Right while I waited to be brought back.

They brought me back to another room where they cleaned the procedure area with some cold ass soap. I waited more. Finally I was brought back to the procedure room with the x-ray machine. They washed me 2 more times with cold ass soaps which made me really cold in an already cold room. They covered me head to toe in a paper sheet and when I say head to toe I mean they actually covered my head so I couldn't see anything. They must have given me medicine at this point because I got a little sleepy. After numbing my skin they started the 20 minute procedure. It was pretty uncomfortable at times because I could feel the pressure of them moving things under my skin. After it was over I was REALLY cold and they covered me in blankets.

I was brought back to the recovery room where they basically turned me in to a blanket burrito. They gave me some tylenol with oxy which did absolutely nothing to help with me major discomfort I was now feeling. I got really nauseous when I stood up to get in the wheelchair probably from the dehydration and medicine on a empty stomach. As soon as I got home I took an nap and woke up about an hour ago. I'm really sore. It hurts to move, it hurts to eat, it even hurts to breathe. I'm hoping the recovery time is fast especially since I might be getting surgery on Friday.

Peace. Love. Fuck cancer

Pre-port day

So I finally broke the news publicly and was able to breathe a sigh of relief. I hope everyone understands why I was being so secretive.

Tomorrow I have the procedure to place the port-a-cath. I have to be awake for it which is going to be weird but I'm ready just to get it done.

I've been so exhausted for days because there is no comfortable way to sleep. I tried using my fancy pregnancy body pillow that kinda looks like a big tentacle but it only seems to help for a few minutes. I'm so anxious to start chemo because I want this pain to go away but I've got all these things to do before that happens.

I'm hoping for a quick, easy and pain free procedure tomorrow!

Peace. Love. Fuck cancer

Thanks

I wanted to use this post to thank everyone who has supported me so far. Family and friends have been sending me their love and hoping that whatever ailes me will subside soon. I feel bad telling people I don't know what's going on but I plan on letting everyone know soon.

My father in law, Ken, has been taking care of Jude and I while Sam is at work. He's been cooking, cleaning and doing repairs around the house. His help is very much appreciated and we can't thank him enough for being here.

My husbands side of the family have all been very supportive and have checked in on us a lot. I'm grateful to have all these people in my life.

My family has been calling me daily to check in since they are thousands of miles away. My dad and little sister will be here in 6 days to stay for the week and help out. I've got lots of projects for my dad and Amber will be helping with Jude and tackling organizing my closet. The day they leave my mom arrives and will stay as long as she needs to. I'm so lucky to have such a great support system near and far.

I want to thank my incredible husband. He's here for me every step of the way holding me up. He works his ass off all day and then comes home and has to take care of me and Jude. I can't even find the words to describe how deeply grateful I am for this man. If it weren't for his persistence I would have never even gone to the hospital and who knows how long it would have been before I found out about the cancer. He's my rock, my everything.

And of course there is my spunky son, Jude. His infectious laugh and smile keep me going. It's so hard not being able to pick him up and take care of him but just being around him brightens my world.

Thank you EVERYONE. Just the simple words of "I'm here for you" or "I'm thinking about you" mean so much to me.

Peace. Love. Fuck cancer.

The Beginning

Today I decided to start a blog. I sort of have this overwhelming feeling to write my story down. I want to be able to share my journey in the hopes that it might help someone else but probably mostly because I think it will help me. Getting my feelings down on paper really gives me this sense of release and the last thing I need right now is to go back to my old ways of bottling up my feelings until I become a mess. So here it goes...

I have Cancer.

Let me rewind a bit.

For weeks I've had back pain that just wouldn't go away. I accounted it to our firm mattress and thought that I just needed to go to the Chiropractor to get adjusted. My back would progressively get more sore as the day went on and after a full day of chasing around my almost 16 month old son, Jude, I would be really uncomfortable. The pain was making it hard to sleep some nights but I'm also a bit of an insomniac so I didn't worry too much. One night a few weeks ago, I stood up from laying down and was instantly in excruciating pain. It was all radiating from my lower back and it was awful. There was a constant pain but it also felt like someone was stabbing me in the same spot over and over and twisting the knife. I couldn't talk, I could barely breathe. My husband, Sam, found me laying in bed writhing around because there was literally no position that stopped this incredible pain. He got me 2 Acetaminophen and 3 Ibuprofen and could only sit and watch while we waited for it to kick in. Eventually the pain receded enough for me to fall asleep and by morning the pain was gone. Again I chalked it up to our firm mattress and life went on.

About a week and half went by and I had another "attack". It was just like the first time, I stood up from laying down and was instantly almost collapsed. My Husband brought me the same dose of pain killers as last time and I eventually fell asleep. Sam begged me to go to the hospital but I refused.

The next night it happened again. Sam begged and pleaded with me to go to the hospital and I finally gave in. He loaded me in the car, grabbed our son and started the 20 minute drive to the closest hospital that accepts our health insurance. When we arrived I was checked in by a nurse and she took my vitals. My heart rate was fine but I had a slight fever. I mentioned to the nurse that the Friday before this I had taken a blood test to check for Thyroid Disease because my Mom has it. They called me that morning (it's now Monday BTW) and said they wanted me to come back and get another test because my white blood cell count was elevated. The nurse took note of it and sent me to the waiting room. A short time later they called us back and I was wheeled into a room with Sam and Jude following behind. I had some blood taken and spoke to the doctor who expressed his concerns about the fever, white blood cell count and the back pain which was localized to one specific vertebrae. He said he wanted me to get an MRI because this could be any number of issues and the MRI and MRI with contrast would help sort that out. My first thought was, "Fuck, really?!". Not because I was worried but because MRI's suck and I didn't want to have to take my nose ring out. I had to wait a while before they were ready to bring me to the fancy giant magnet tube and my concern turned to Sam and Jude. Sam had to work in the morning and they estimated that it would be 3 am before I had the MRI and got the results. Poor Jude was woken not too long after going to bed and was stuck in a hospital room with nothing to do. Luckily Sam was able to get Jude to sleep while I was away getting the MRI.

Finally the doctor returned to my room and informed us that there was a "mass" found on my L3 which is the exact place where I was feeling pain. He said this mass could be any number of things and wanted more blood samples. They took more blood and then more in two different spots. The doctor said they need to transfer me to another hospital 25 minutes away. He explained that there were Neurosurgeons there who could figure this all out. I felt a little worried but was still honestly more concerned about Sam missing work and Jude missing sleep. I was transported by ambulance while Sam and Jude stopped at home to pick up some things. By the time I arrived at the second hospital it was 6 am. Sam and Jude arrived a short time later with snacks to occupy the two of them. More blood was taken from me and I had to wait a few hours to see a doctor. An Internal Medicine Doctor finally came by to give me a short exam and ask a few questions. He ordered a CT scan and then more blood tests.

After more waiting the doctor came back but this time he was not alone, There was a second Internal Medicine Doctor with him. At this point my husband had left the room to show Jude around the halls because sitting in the cramped hospital room was getting old for him. Next came the moment my life changed. The second doctor said, "We believe at this time that you have Lymphoma. We aren't 100% sure but that's the way it looks.". Wait, what?! This man just casually walked into my room and nonchalantly informed me that I have cancer. I nodded my head and tried to take in everything he was saying. It was so surreal at first I don't think I even was able to process what he said. The doctors left the room as my husband and son were coming in. A nurse came by to do vitals and take more blood (I swear they must have taken a gallon of blood from me in the couple days I was in the hospital. I had holes all over my hands and waginas [oppisite of wenis...it's a techincal term]). Sam asked what the doctors had said but I didn't want to freak out in front of the nurse so I told him to wait. I fought back tears as she finished taking a couple vials of blood and as soon as she was out the door I gave in. I was trying to talk but I couldn't. Sam sat there confused as I finally was able to choke out the words, "They said I have Lymphoma.". He comforted me for a while as we both tried to process what the hell just happened.

 I came in for a backache and now they are telling me I have cancer. How the fuck does this happen?

Sam's Dad drove 2 hours to help take care of Jude and I was taken for a biopsy of the "mass". I was put into a CT machine and they adjusted me a million times and then jabbed me with a needle to get a piece of the "mass". I was told I wouldn't feel it and wouldn't remember afterword but I felt everything. It was extremely painful. The nurse noticed my heart rate spike and kept giving me more and more meds but the pain didn't end until it was over.

We spent that night in the hospital and the next day met a Hematology Oncologist. He ordered a full body CT with contrast and then gave us the OK to go home and wait for the results of the biopsy. He reiterated that he also was certain this was a form of Lymphoma.

The weekend passed and then we were able to go in and meet with the Oncologist again. He gave us the news that unforunatly there was not a big enough sample from the biopsy to get an accurate reading and I needed another. He said the little bit they did get looked like it was most likely Hodgkin's Lymphoma. The full body CT revealed enlarged lymph nodes in my chest and he wanted to get a biopsy from there because they could get a much bigger piece. This would require me to go to a Cardio Thoracic Surgeon so they could cut me open and get behind my breast plate. My doctor wanted to go ahead and get the ball rolling on everything I'd need and scheduled me for a PET scan, port placement, biopsy surgery, ECHO and pulmonary test all within two weeks. Also, you guessed it, they took MORE blood.

I had the PET scan this past Friday. They injected a radioactive sugar water into my veins and waited for it to sink in before the 16 minute scan. The radioactive stuff is supposed to latch on to cancer cells and illuminate them on the scan, This will help determine what stage my cancer is at. It also provides a road map for the cancer so the can re-scan me post chemo to check my progress.

On Tuesday I will have my port placed which I'm worried about but at the same time relieved. I am so tired of getting jabbed with needles at this point. There were too many nurses in the second hospital who had to stab me multiple times before giving up and asking someone else to do it. I found a pattern online for a "port pillow" which is bascially a munchkin pillow with velcro to go on my seatbelt. It will lift the seatbelt slightly so that it doesn't rub on my port. I'll post a pic later.

On Wednesday I meet with the Cardio Surgeon to talk about the biopsy surgery.

On Thursday I get the ECHO and pulmonary tests.

On Friday we are hoping to do the biopsy.

On Saturday my Dad and little sister arrive for the week. I CAN NOT WAIT. I'm close to my father and having him around, even for just a week, is going to be great. When he heard the news he was speechless and devastated. Although I have two older siblings, I am my father's first born. Now that I'm a parent I can imagine the pain and shock he must of felt knowing his child has cancer. I have only told close family on both sides so far because I didn't want everyone to know until it was absolutely clear what we were dealing with. I know I probably won't be able to hide it much longer since I'll have a port in a couple days.

The reactions of other people get me so emotional even though at this point I've just been trying to stay positive. I believe a big part of healing comes from your attitude and how you treat yourself. Every once in a while I'll get teary eyed for a minute when I think of the effects this diagnosis will have on me and my family. Since there are cancer cells in my L3 I can't lift anything more than 10 lbs or move too abruptly. The cancer is making the bone week and it could fracture. This means I can't pick up my son. I have to completely rely on other people to care for him and myself. My back is in constant pain but moving around makes it worse. Walking a few aisles in the store puts me out for the rest of the day.

I didn't intend to make such a long first post but I guess I had a lot to explain. I promise they will be much shorter in the future and funnier since I won't have SOOO many facts to get down.

Until tomorrow...
Peace. Love. FUCK CANCER

Confused about what Lymphoma is? Find more info HERE