Feeling Bad

I should be feeling much better than I am at this point in the chemo cycle. I had chemo well over a week ago (Friday June 19). I'm exhausted, dizzy, hot, cold, and in major pain from the Neupogen shot I had yesterday. I've been trying to push myself to be "normal" today, but the harder I try the worse I feel. I even took a nap with River and Raine and asked Skye if she could play in her bed since she wasn't tired. It's so good to know I can trust her. She sat up in her bed playing so nicely and when I got up she came out with hugs and kisses for me. I thawed out some chicken for dinner but can't even imagine having to cook so I emailed the hubby and asked him for suggestions. He's going to make "chicken 'n cheese" - it's chicken breast cut up and mixed with chicken flavored rice-a-roni with melted cheddar over the top - so easy a husband can do it.

Sunday we went to 7 Mile Fair. It was me, the hubby, the girls, my sister and brother in-law, my parents, and my aunt and uncle. We were there from about 11 to 2:30ish. It was a lot of walking, but I really felt good and could've kept going. I don't know if that's why I'm feeling so run down the last two days or if my counts have dropped or what's going on.

I've noticed that my feet have been really stinky lately. I read up on nail fungus and figured out that's what's going on - it's not my feet, it's my nail(s). I've been soaking my feet in apple cider vinegar to kill the fungus but it's tedious and I'd have to do this for months and months - months to kill the fungus and months to grow back new nails so that's a lot of apple cider vinegar. I also read that lemon grass oil will kill the fungus and it should come with a dropper but that it'll turn my nails black. I'm so upset about this. I'd rather my hair had fallen out than have to deal with this. This is going to be at least a 6 month battle. So far it's just my thumb nails and big toe nails and they're really coming apart from the nail beds - thus the fungus. It seems pointless to start treating it now because I have more chemo and it's going to keep affecting my nails, but I also don't want it to spread to my other nails.

I've also been going to the bathroom a lot lately. My bum is killing me and I feel gross all the time. On days like today I'm afraid to get into the shower because of the dizzy spells. I'm trying not to be frustrated about this - I'd rather have things moving than the alternative which I've already experienced, but it's so painful. I bought myself some adult wipes to help relieve the discomfort of wiping, but sitting has even become an uncomfortable practice.

I'm really hoping to feel better by the weekend. My family is coming from up North and my guilt trip on my cousin Jesse worked. We're going to be sitting outside our friend's bar for the parade and then heading over to my Aunt and Uncle's house for an all day party. She even bought a pool for the kids to play in. This weekend is so important to me because we don't see them often and they've been keeping in touch with me, sending me their prayers and love and I just really want to see them.

Hair and Things

Having my head shaved has been a blessing and a curse. It's a blessing because I don't have to spend any time on it, it keeps me cooler during hot days, and I don't find hair all over my bathroom from the constant fallout I've been experiencing. It's been a curse because everybody stares at me, and because it's not very feminine. I'm not really a girly girl - never really have been, but I like to look like a girl. I've managed to find that the quickest way for me to soften up my look is some foundation, mascara, and dangly earrings.

Before Smackdown the other night I was performing the above girly ritual and noticed how light my eyebrows were...not light, thin. Anyone who knows me knows that one of the things I dislike most about myself is my eyebrows. They are dark and thick and bushy. One of the worst things about being on blood thinners is not being able to get the ol' brows waxed or plucked or anything.

Luckily, my eyebrows thinned out a little initially and they didn't look all that bad I guess. But now, they are super thin and almost look fake.

My hair loss has been a strange thing. The hair on my head is constantly falling out, but has never completely fallen out. My eyebrows are super thin. My armpits are bare. My leg hair grows faster than ever. And then, well, lets just say I haven't had to perform any maintenance anywhere else.

Smackdown was great. I did pretty well thru most of it, but started getting very uncomfortable toward the end of it. The seats weren't comfortable to begin with and add shooting pains and the heat. But I stuck it out - that's how much I love Jeff Hardy. I swear he waved back at me and at one point it looked like he said my name and even though I know better, I still like to think that he did.

My nails are becoming quite the problem. They are so thin that they just rip when I bump them on something. I can barely button my kids clothes and my thumbs and big toes hurt all the time. Opening a can of soda is a project and I find myself relying on the kindness of others to do more and more things for me. You never appreciate these things until they're gone.

I stopped by work today and they had gift bags for the girls. Each girl got 5 dresses and some pj's and then there was another bag with summer toys (chalk, bubbles, a ball, frisbee, etc) and art supplies. My unit has been so kind to me and my family over the last months - they are a unit of angels. There was also a check for $200 from the unit's old Social Worker Mary. She was always a quirky spirit and I thought she was fantastic. I am still in disbelief that she gave us so much - it speaks volumes. After everything they have all done for me, I am so touched that so many good people can be found in one place, and I am lucky enough to have them in my life.

Rough Night

This has been a rough chemo with symptoms starting as soon as the day after. After being in pain all day yesterday and trying everything to distract myself, I could not sleep at all. My mind was swimming with my Super Mario game, my Dexter book, the True Blood tv show, I'm a Celebrity Get Me Out of Here. I was thinking about my kids, my job, my pains, my husband, Smackdown. I couldn't grab a clear thought to save my life and before I knew it, it was 5am and
River was crawling into bed with me telling me she was hungry.

It has been so long since my mind has been flooded with thoughts this way and I must say, I didn't miss it. Add to that my chemo brain and it made for a very frustrating, confusing, and crazy night.

The Hardest Thing

As I was lying in bed with the window open, trying to find some relief from the surges of pain shooting through my body, I couldn't stop my mind from wandering to what I heard outside...my kids playing. How I love to listen to them carry on conversations with each other and teach each other.

I laid there half listening, half thinking about all the things I should be doing instead of lying in bed, in pain, exhausted. I should be filling their sandbox, taking them to the park, for a walk around the block, taking their pictures, teaching them songs, working on their activity books, and so much more.

The hardest thing for me during all of this has been that I am unable to be the mom that I want to be, and here is was being shoved in my face as I lay there waiting for my meds to kick in. These pains and fatigue are too much for even me to fight off and so I was stuck there feeling a bit sorry for myself and bit lucky to at least be able to hear them chattering and playing.

The Fourth of July is fast approaching and I made sure that I would be able to enjoy this one celebration. Every other celebration has fallen within a few days of chemo - Easter, Mother's Day, Father's Day and the Fourth was to be no different. I asked Dr. Howard if I could post-pone my July 3rd chemo until July 6th and told her about my family coming from up North. She was happy to oblige and I am so grateful that I will have those few days to celebrate and spend with my family. What a celebration it will be! So I'm trying to direct my focus on that and on the fact that I only have to go through this three more times - only three and as I think about that, little "hallelujahs" pop into my head.

Feeling Kinda Yucky

Last night I had a very hard time falling asleep due to some nausea and queasiness paired with restlessness from the steroids in my chemo. I took a Lorazepam in hopes to solve all of this and that little shit took forever to kick in!

Today I'm pretty queasy too. I rarely feel this way - especially this soon after chemo. I'm hoping it's hitting me early, so that by Tuesday I'll be in tip top shape to go see Smackdown & ECW.

My newer symptoms include cramps - cramps in my feet and calves mostly but also just an overall soreness in both of my legs. My nails have also grown very thin - so thin they rip if I bump them on anything. My two thumb nails and two big toe nails hurt to the touch and I have trouble with buttons and other things that require my thumbs. They've also developed a discoloration which we don't know if it's a fungus or the nails coming off of the nail bed. Dr. Howard said there isn't much we can do until after chemo is over. Just another thing to add to my every growing list of things to take care of when chemo is over.

I had already planned on joining a gym or something after chemo anyway, but my PET scan showed a fatty infiltration in the liver so I have to lose weight. She told me I can wait until after chemo as well. So this cancer is not just going to be over, I will have to deal with the ripples for a long time to come.

On a lighter note, I found this pin online at ChooseHope.com and it made my day...

PET Scan Results

Well, my PET scan was completely clear. I'm not feeling as happy about it as I should be and I can't figure out why. Don't get me wrong, I'm having waves of happiness and giddiness, but they're always interrupted by some underlying thoughts or fears. I believe part of it that I have to focus now to get thru three more chemo sessions and they've been slowly getting harder and harder to deal with. I think another part of it is having to find myself again. I'm no longer going to be the cancer patient that I have been for the last four months - six months when this is over. I'm going to have to refocus all of my energy on a different aspect of getting/being healthy and I'm going to have to go back to life as it was before, go back to work, worry about sitters for the kids, ect. Will I have enough time to do all the things I want to do? And what do I want to do? Do I want to go back to school? If so, for what? But most of all, I worry that I'll always be living in fear...fear of the next scan, fear of a recurrence, fear for my life.

I hope that I can deal with these feelings and let the sun shine thru. I have beat cancer and that is a great thing. I just pray that I won't have to fight like this ever again.

Chemo Head

I've read a little bit about people having "chemo head" and I've even seen some products - t-shirts, mugs, etc. that say things about it but I am starting to experience what it is...

I feel like a senile old lady. I'll find myself in the kitchen and wonder why I'm there. Not to be confused with going into the kitchen to get something and forgetting what you were looking for - this is actually as if I'm waking up in the kitchen and wondering what the hell I'm doing in there.

I'm beyond forgetful. I thought my memory was bad before, but this is different too. Yesterday I studied my husband's amazon.com wishlist for quite some time and when I went to Target to look for the things on his wishlist, I stood there with a completely blank mind. I literally was searching my mind for anything and I couldn't come up with one thing. I wasn't even able to envision the list on the screen in my mind - as if I never saw it to begin with. It was terrifying.

I walked around the store with my sister completely unable to focus on anything or even keep my attention on any one thing. She would talk to me and my mind would be gone - I had no idea what she said to me, nor did I know what I was thinking about that distracted me. I joked with her about it, trying to play it off but it was really scary.

Catching Up

Thankfully, there have been no more surprises or crisis to deal with since my lung. I like to joke that quitting smoking ruined my life - that my lungs were protected by all the tar and chemicals but I know better.

In the weeks between the lung revelation and now, I got a new primary physician and paid almost $56 for all of my medical records from the old doctor. I had been with him since 1994 and I wanted everything - I didn't just want it transferred, I wanted it in my hand for my own records. I met with my new doctor and I really liked her. I really felt that she was there in that room for me for the time we were together. And I don't want to be sexist, but I've had such good experiences with women starting with Dr. Howard that I think I'll stick with women from now on.

I also switched the girls to a different doctor so that I could get us completely out of the healthcare system we were in.

I had another Pulmonary Function Test to make sure the chemo wasn't affecting my lungs. The results were the same as the one before my chemo - which is actually better since I'm no longer on asthma meds.

Mother's Day came and went and I actually stayed awake for all of it.

I learned that I've gained 8lbs since starting chemo which was quite a blow. I know there are steroids in the chemo and I know that I'm not able to be as active but it still hit me pretty hard. I plan on joining a gym once this is over to get myself back into shape...pre-twin shape even.

My short-term disability ran out and I don't qualify for long term disability.

Some friends of mine at work organized a bake sale for me and so many people in my unit participated. They raised over $1400 for me and my family. They also took up a collection of clothes and stuff for my girls and are trying to get me approved for PTO donation which many people have already offered to do for me. I truly work with angels.

I chaperoned a field trip. I volunteered thinking I would be done with chemo and I was very worried about going because I get car sick after about 20 minutes in a car. I bought some Sea Bands from Walgreens and took my nausea meds and it worked out great!

We've applied with our mortgage company for their modification/assistance program. All I wanted to do was inquire to see if we could pay interest only or if we had any options until I went back to work and I had to go thru this huge application process which I still haven't heard back about. Apparently the bank created a new department dedicated to this and no one knows their ass from a hole in the ground so we've continued to pay our mortgage in full.

I applied for a co-pay assistance program. I should've done it a long time ago, but I wasn't aware of any such thing until recently. I do qualify and I sent the application package back a little over a week ago.

Yesterday I had a PET scan to check the progress. I was supposed to have it Saturday morning, but started puking - which is really strange for me. The last time I threw up was about 4 1/2 years ago when I had a kidney stone. I rescheduled it for yesterday (June 16). Dr. Howard thinks the cancer should be all gone, but I will still have to go thru four more chemo sessions before I'm done. I will get the results on Friday.

One huge help to us has been a Meals On Wheels that my aunt organized. She asked my family and friends to make us dinners and bring them to us the day of chemo and the three days after. Everyone had made great dishes and all the food ends up lasting us the whole week so this saves us money on groceries.

I am very thankful to all of my family and friends who have helped us out or just called or emailed to check on me. The one good thing that came out of this experience has been all of the love I have received.

This brings my story current. I will continue to blog as my story continues.

My Routine and My Darkest Place

I have chemo every other Friday. Bryan takes off of work and comes with me and my grandma watches the girls. Chemo takes about four hours and we usually do crossword puzzles together or just hang. Friday night I typically get one bout of nausea and take a pill, and other than that feel pretty good. I do get very hot - like it's 90 degrees and I start "smelling the chemo" - a chemical-like odor I smell on myself that no one else seems to smell.

The Saturday after chemo I feel pretty good all day long and usually go shopping with my mom or sister just to get out of the house before it kicks in. Saturday night I tend to fall asleep around 9:30ish, sometimes earlier.

Sunday I'm exhausted, can really smell the chemo on me, feel queasy, and just not well. Some Sundays are better than others, but I tend to spend a good chunk of the day in my bed watching whatever series on DVD. My sister let me borrow her portable DVD player and I went thru seven seasons of Srubs and started Bones season 1.

Monday Bryan takes off to stay with me and it's more of the same as it was Sunday with the addition of bone pain. I get pains as if someone is sticking a pin into me all over my body, here there and everywhere. Because I'm limited to Tylenol and Percocet, I go with the Percocet to help get rid of these. I try to limit my percocet intake because it can cause constipation and God knows, I don't want to deal with that again. Mondays instead of just laying in bed, I have pillows between my knees or under my leg or whatever is hurting the worst that day.

Tuesday the queasiness goes away and I don't really get tired except for a bout in the afternoon. My mom, dad, and sister have been rotating coming over on this day to help me with the kiddos and let me nap as needed. Even tho the pains are the worst on this day, I love this day because I get to spend time with my family.

Wednesday everything subsides except the pains. The pain is not as severe as the day before, but still there and in a more annoying achy way. It's like this until at least Friday or Saturday, but I've learned to live with it and not let it stop me. My grandma was coming over on this day and then rest of my days home alone so I could walk Skye to school and pick her up. She would stay for the three hours so I could rest. (school is over now)

The following week I start Neupogen shots on Monday and have them thru Wednesday. These are the shots in my belly that make my body produce more marrow. These shots cause even more severe pain than the chemo, but I need them to boost my cell counts. These pains are very sharp pains in my lower spine and hip bones and they come out of nowhere. It's almost comedic to see me walking along and fly to the left as a pain shoots thru me. These pains typically start Tuesday and go thru Thursday, bringing me back to Chemo Friday.

Through a lot of this, I have managed to stay fairly positive with only a few minor "dark" days. Around mid-May I went into a very dark place. It started with a bad day with the girls, no one was listening to me the whole day and by the time Bryan got home I couldn't take another minute. I went into my room and stayed there until they were asleep. I came out crying and went on and on about not being able to deal with things because I'm too busy and how no one cares that I'm sick and no one listens to me. Bryan didn't know what to say, but I do know he had a talk with the kids. Unlike most dark days, I didn't just snap out of it after a good night's sleep...

May 15, 2009
I'm tired - like can hardly keep my eyes open kind of tired. My head hurts which is making me nauseous. My stomach burns as if I swallowed poison. My bones from my lower back down thru my toes are in pain. I didn't sleep much last night because bone pain on the right side of my upper body and both sides of my lower body. One pain pill isn't enough but two make me feel sick. I sweat all night long. Everything is making either tear up or become enraged. I haven't had my period since the beginning of April which is a bitter-sweet thing. I hate the way I smell - like chemicals and rubbing alcohol. I have to start shots on Monday to boost my cell counts that will cause even more bone pain and will cost me a small fortune. I am constantly worrying about how we're going to financially survive. I have three little people looking to me for something fun to do. I only feel really good about two days in a two week period. And I have to go thru this for about 13 more weeks.

The pains and sickness I wrote of in this journal entry are part of my routine. Some days aren't so bad and some are worse, but I can't let it keep me down. This was my darkest, and I was in this funk for about a week. It was a scary place to be but I think that I needed to be there for awhile, to really feel it instead of just going along and suppressing everything.

CT Results

Friday April 24 I had chemo and met with Dr. Howard for my CT results. We sat down in a room and she told me the CT was clear. She spoke about all the areas the cancer was in, mentioning the throat/mediastinum area again. I questioned her about this since my primary doctor never mentioned the area but the Radiation Oncologist did. We went over the radiology reports together. So I asked her if it was possible that this was the cause of all of my breathing problems and not asthma. I told her that I hadn't been taking my asthma medication for about three weeks. She found the concept "interesting" and told me that she was going to meet with the radiologist to check on the lesions on my lungs because he didn't mention them in the report, and that she would get back to me after she sat down with him.

While she was gone, I sat down in my recliner and started the chemo process. I was a bit nervous about the lesions on my lungs. If they were gone that would mean that they were cancerous. If they were the same size as my original scans, that would mean they are just scar tissue. My mind was cranking thinking about being diagnosed with asthma and I tried to remain calm but something inside of me knew that I was right.

During chemo Dr. Howard came back and told me that she sat with the Radiologist and the lesions are the same size. She then told me that they found a "thickening" around my right lung in the original scans that is now gone. I told her that my Pulmonologist told me that the "thickening" was a pleural cap and nothing to worry about. She nodded and repeated that it is gone now and that she and the radiologist think that it was lymphoma around my lung which would make me a Stage IV cancer instead of a Stage II. She told me she was going to call my Pulmonologist to see if there could be any other explanation for it disappearing, but I could tell by her voice that she was pretty sure there wasn't.

Of coarse the Pulmonologist was on vacation that day so I had to wait until Monday for him to call her back. I called her on Monday and she talked to him, but he wanted to to look over all of my scans before giving her an answer.

On Tuesday April 28 Dr. Howard called me with the news that my Pulmonologist agrees that it was lymphoma around my lung, making me a Stage IV. Stage IV just sounds so scary, but all it means is that the cancer has spread to multiple organs. Dr. Howard assured me that the treatment was working well. So what did this mean for me? It meant SEVEN more cycles of chemo instead of three. It meant that in March of 2008 when my breathing problems started and I had that x-ray that I had cancer - cancer that went untreated for almost a year before we found it even tho I was at the doctor many, many times before that. I was devastated and irate and even now I still have a huge chip on my shoulder about it and a general distrust for anything a doctor says...except Dr. Howard.

More Journal Entries

Nothing major happened in the following weeks. I had chemo on Good Friday and would soon learn that I had chemo the Friday before everything (mother's day, father's day, Smackdown, and the 4th of July). Easter came and went and was absolutely exhausting.

I tried to maintain a normal life - meeting friends for breakfast, going out to dinner with my parents, but there is this terrible feeling of being "different" that goes along with cancer - at least for me. I never minded being different - I loved it, thrived on it even but not like this. This was different. Here is an excerpt from my journal regarding Easter:

Easter would be considered a “success”. I went to church, to my parents house, to my aunt’s house, and finally to my father in-law’s house. I don’t view it as a “success”. I felt like I was a ghost, watching everyone live their lives and enjoy their day – all of them unaware of me, my fatigue, my pain. I went to church looking for some inspiration and found only annoyance with all the people there and all the screaming, chattering kids…mine included. I rushed to my parents house and we were rushed in and out of there to get to my aunt’s on time because church was so long. And there it was – the bulk of the celebration and I felt alone – like a stranger among my own family. That is, until I fell asleep. And yet still to my father in-law’s house we went and I slept on the couch the whole time. The few times I did awake I found myself angry that I was still there. Does anyone care that I had chemo just two days before this?

Wednesday April 22 I had a CT scan to check the progress of the chemo. I have never been so nervous about a scan in my life...

Tommorow is my first scan since all of this began and I find myself choked up more so than not. There’s this fear in me wondering if the cancer has spread, if there could be more and what if there is more that are in parts of my body that aren’t being scanned. Why am I not getting another PET scan? I am sad because I feel like I’m going to live the rest of my life from scan to scan – always in fear of the next scan. How can I get over that? I can’t. And maybe, just maybe I’ll forget about it for a week, a month, a few months even and then biggity bam: another scan. I guess it doesn’t help that the sun hasn’t shown it’s face for 3 days now and that I’m truly sick and tired of winter cold but I feel like I can’t deal much with anything right now. The thought of a CT brings me to tears. The girls are driving me absolutely insane. All the calm that I’ve felt the past few months feels like it’s slowly slipping from me only to be replaced by insanity. I’m sick of so much I dare not even list it all.

My hair never fell out like most cancer patients. Don't get me wrong, it was constantly coming out. It reminded me of that witch from Bugs Bunny with the bobby pins, only with hair. Every time I touched it, every time I showered. At first I cut it short and dyed it purple in anticipation of being completely bald. I figured I'd have some fun with it first. When it didn't fall out and there was short purple hair all over the bathroom floor and sink I decided to shave it. I started it by myself but that was a disaster so Bryan finished it off for me. I left my bangs for a more feminine look (haha). I had always wanted my head when I was younger so I was a little excited about it.

Little did I know that every single person I passed by anywhere I went would stare at me. I thought the human race had progressed more than this, but I was wrong. I've never been one to care what other people thought, but for some reason the whispers and stares bother me now. I just want to smash people's heads together and scream "I have cancer!" But then I remind myself that I really don't care - they don't know me and if they want to be ignorant assholes, then let them. Still, some days it wears on me.

head shaved with bangs - I'm so punk rock

This next journal entry is pretty personal and I went back and forth about posting it here, but decided I would. I'm writing this blog to paint a picture and leaving this out would be like leaving a corner of the canvas blank.

Sex
It’s not like I get any. When I do feel good enough to have sex it’s during the daylight hours and by sunset I’m too exhausted to even think about it. But there was a night where I was feelin’ it and so was he. We were in the middle of it, and I was really getting into it – he was kissing my chest all over and then he kissed my port. He continued on like it was nothing, but it ruined everything. In the heat of the moment I’m only thinking of one thing – getting off and I may from time to time think about Jeff Hardy to get there…especially with the heavy load on my mind these days. Anyway, the second his lips touched that part of my body it brought back all the insecurities, emotions, and generally bad thoughts about cancer to light – as if he just shined a spot light onto my naked body. I couldn’t get off after that, I just wanted him to get off – literally – off of me.

This was one experience. We've had sex a few other times during all of this mess and it wasn't as dramatic as this but I am always aware of this port in my chest and my mind always drifts to the big "C" taking all of the enjoyment out of it.

Trip to the ER (the stuff they don't tell you about)

The next couple of weeks were pretty uneventful. My hair still hadn't fallen out, but was constantly coming out even after I cut it really short. I was settling into a "pattern" of sorts with the chemo.

My doctor had told me to do what it takes to keep my bowels moving, so when I felt bloated and very constipated Thursday April 2nd I took a Dulcolax.

At about 3am Friday I started having cramping pain - that cramping like when you have diarrhea only nothing was coming out. The waves of cramping slowly got worse and worse and worse and by 6am I was on the living room floor sweating and reeling in pain. My husband asked if I was o.k. and I told him no and do you know what he said? He said "I gotta go" and left for work.

By 8:00 I couldn't take it anymore and I called my doctor's office and talked to a nurse that I hadn't met before. I told her what was going on and she told me that Dr. Howard wasn't in, but that they'd call me when she came in. This was unacceptable and I knew that if it was a nurse that knew me, she'd have heard in my voice the pain I was in.

I called my grandma and asked if she could come over. I told her I wasn't feeling well and couldn't handle the girls. Then I called my mom and she told me she'd take me to the ER. Shortly after Bryan called and said he was coming home. I was in so much pain I couldn't keep myself from moaning and crying. I couldn't wait to get to the ER.

Once I was in the emergency room, the nurse wanted to start and IV. She asked if I could lay back and I told her no. I was currently having a wave of pain and needed to wait until it subsided before I could move. Once I laid back, I told her that I had a mediport, but she didn't want to use it for whatever reason. She insisted on an IV and blew my vein instantly and it was very, very painful.

it's now mid-June and you can still see where this bruise was

After blowing out my vein, she decided to hook into my port. They drew blood for the lab and gave me some fluids. A doctor came in and talked to me, felt my stomach, etc. He told me they would do a rectal exam and an x-ray, possibly a CT depending what they find. They gave me a shot of morphine and after it kicked in the doctor came in to do my rectal exam. He apologized to me 1,000 times during it but I didn't care - whatever it took to stop the madness was just fine with me said the morphine.

Shortly after the morphine started to wear off and they gave me another shot of it. They didn't want to give me too much because morphine constipates and they didn't want to make things worse. After this we waited a very long time and I called the nurse in twice to find out what is going on but my nurse was either busy or on lunch and the two people I talked to were clueless.

Finally the x-ray tech came and got me and we were off to x-ray. My morphine was starting to wear off again and I had to stand for the x-ray. I managed to do it - twice, since the first x-ray didn't turn out so good. She rolled me back to my room.

The doctor came back in and told me I had ileus, which is a temporary paralyzation of the large intestine, and obstipation (severe constipation). Basically, things weren't moving thru like they should be due to the chemo and by the time I took the laxative and things started moving, things were so hard they couldn't come out, thus the severe cramping. Yes, it's o.k. to say it: I was full of shit.

They moved me to a room with it's own bathroom and gave me an enema. It didn't seem like it was going to work, and she even told me it can take more than one. It wasn't as unpleasant as the pains I was having so again, I just went with it. Finally, I had relief - oh boy did I have relief and it was sweet.

They discharged me home and recommended Miralax.

The next day I had a feeling of being full all day, painfully full and uncomfortable so I paged the on-call doctor and he told me to up my Miralax to twice a day. I fear I may sound like a commercial, but Miralax is my new best friend and I have been faithfully taking it daily to make sure I never end up with an ileus again.

From My Journal

Below are some excerpts from my journal to show my frame of mind around this time period.

Wednesday March 11, 2009
Today is Wednesday. Friday I have chemo for the 2nd time. Perhaps this is the reason for my anger, irritability, and overall overly emotional state today. Perhaps it was that episode of Without A Trace – the one where Martin’s aunt is dying because the chemo didn’t work. It left me wondering “what if they’re wrong?” What if my cancer IS Non-Hodgkin’s and they’re using the wrong chemo? Maybe it’s Nip/Tuck and that “Christian’s” treatment didn’t work. Maybe I should stop watching TV. I could read more. Read all of those cancer books. The ones that force me to realize that yes, I do have cancer. This IS real. It isn’t going away. I have one about parenting with cancer. I don’t have the energy and patience ½ the time. Skye is always crying lately. Don’t I get to cry? Why do I always have to take care of everyone else, all the time?! I would love just one day alone. One whole day where I can wake and sleep and eat and piss as I please, watch what I want, read when I want for however long I want. One whole 24-hour period. Just one so this whole thing has time to really sink in. So I can really think about it, chew on it, and swallow it even. Because I haven’t had one minute to process since this whole thing began.

Monday March 24, 2009
I’m in kind of a dark place right now. I’m not sure why. I just left Amanda’s house and had a great time with her. On the way home I listened to Nada Surf, song 7 and it just put me in a dark place. I can’t help wondering how the chemo is doing. As sick as I am of appointments, I wish I could have a scan every week to make sure it’s not spreading and that it’s shrinking and that things are going well so I’m not constantly wondering what will happen to me. I’m getting over a cold right now. Sunday I thought I would have to go to the hospital I felt so shitty, but now I’m feeling o.k. physically. Mentally I think I’m kind of a mess that needs to be cleaned up, but who has time to think about it with three kids running around all the time. I need to be alone. I need to look this in the eyes in my own way and cry about it and get mad about it and find some good in it. I’m going to have to talk to Bryan about it. I’m not sure how he’ll respond. We don’t talk about things like we used to – not because of the cancer, this has been going on since I was pregnant with Skye. I’m sure if you ask him, he’ll be naive to it, but it’s how I feel about it. Maybe this will bring us closer or maybe it’ll tear us apart. Only time will tell. Right now I don’t feel I can talk to anyone about it. I have to be the strong wife and mother at home. Everyone keeps saying how tough I am and I feel like I have to live up to that to some extent – the strong daughter, big sister, mom, wife, friend. I don’t feel very tough. I feel weak. Like a wuss. I’m not really tough, I just play tough on TV. I want to just curl up into a ball and cry and sleep. Just wake me when I have an appointment and I’ll show up. I have a hard time talking about it and letting my guard down. People ask how I’m doing and I just don’t believe they really want the answer. They want to hear “I’m hanging in there” or “I’m doing good”. I’d like to tell them that I’m afraid to look in the mirror in the morning because my hair might be gone or that I step into the shower with tears every day knowing I could be pulling out clumps of hair. People tell me positive things and I don’t want to hear it. I don’t care how many people are on thyroid replacement pills, I don’t want my thyroid burned out of my neck by radiation. I’m 33. How old are they? 50? That’s 20 less years they’re on them. I feel like I’m PMSing constantly. Skye said “I wish you weren’t cantankerous today”. Nice.

Radiation Oncology Appointment & Some Other Things

On Tuesday March 10, I went to the clinic in the morning so they could check my blood counts. In the afternoon I saw a Radiation Oncologist - Dr. Ziaja. She was a very upbeat and positive person and I enjoyed meeting her. She told me that lymphoma follows a pattern in the body and that we would radiate only the areas that have been affected. On me this would mean my right axilla (armpit), right neck, and right superior mediastinum...my what? My mediastinum:

This is not my scan - found it on google images

I had no idea about my mediastinum; what was she talking about? She showed me the area on my chest. I was a bit confused as no one had mentioned this area to me before, but thought I would check with Dr. Howard about it. Dr. Ziaja continued on with the side effects:

-My thyroid is in the way of the neck, so it could be destroyed
and I would have to go on pills for the rest of my life.

-The armpit is close to my breast so I would have a small chance of getting
breast cancer in the next 10 years.

-The mediastinum is close to the lungs so I have a small chance of getting
lung cancer in the next 10 years.

-My esophagus would be sore due to the radiation but that would only be temporary.

I wasn't at all comfortable with these risks, no matter how small. There was already a history of lung and breast cancer in my family and I didn't want to have to go thru either of them - especially in 10 years. I thought of it like this: In 10 years I'll get another cancer, have to have more radiation so in another 10 years more cancer and more radiation and basically have cancer every 10 years for the rest of my life. I decided I would talk to Dr. Howard about my concerns.

On Friday March 13th we took the twins to their K4 screening and they passed with flying colors. They were screened by Skye's K4 teacher so she was already familiar with them. Afterwards we took them home and then off to the clinic for chemo.

At the clinic they took my blood and my counts were low. Dr. Howard told them to give me the chemo anyway and to put me on Neupogen shots. These shots boost the amount of bone marrow production, thus boosting the cell counts. I would not be on two shots - Arixtra in the belling and Neupogen on the arm. Neupogen was another pretty $75 co-pay.

I didn't tolerate this chemo quite as well as the first. I was exhausted and feeling pretty sick that first day, probably due to my low cell count. The rest of the days seemed to be the same as last time with a little more intensity.

On Wednesday March 18th I had another ultrasound and the clot was gone!!!!! Finally I could stop the Arixtra shots and go on a pill!

The Next Few Days

The next day Bryan was throwing up. I get chemo, and he throws up. It was Saturday February 28th and I actually felt pretty good. I was afraid to go anywhere because I didn't know how or when the chemo would hit me.

Sunday I was queasy and tired - so very tired. I slept a lot and took a lot of my anti-nausea meds. Monday was more of the same, only now I was getting pains in my bones. They were sharp pains which I can only compare to being a voo doo doll - like someone was sticking needles into me all over. Because of the blood thinners, I couldn't take much for pain so I called the clinic to see if I could take my leftover percocets and they said yes.

Tuesday the queasiness subsided, but the pains were worse. My mom had taken off of work to help me out with the kiddos so I was thankful for that. I didn't get tired until around 3:00 in the afternoon.

By Wednesday I was feeling better - not back to my old self, but better. I went in for another ultrasound and the tech told me that a clot would take a few weeks to dissolve and sure enough he found it right away. I went to the clinic to see Dr. Howard and got a prescription for more Arixtra shots. I ended up being on these shots for a total of 20 days.

Friday March 6th I woke up with the idea (and a bug up my ass) to get me and the girls picture taken together before my hair would fall out. I called up JC Penney and set an appointment for the next day. I took the girls to Target and we bought similar t-shirts, different colors. I decided we would wear jeans and t-shirts and was very excited about doing this.

Saturday came and my mom, sister, and I had plans to go to the Grand Avenue mall to look at a wig. I took a shower and noticed a clump of hair in my pj shirt when I pulled it off. I had already noticed a texture change when I washed it - like it had been bleached out - it felt like straw and I had to over-condition and leave in the conditioner for quite some time. I also noticed hair falling out whenever I touched it - not in big clumps but more than normal. I know it's silly, but I was worried it would all fall out before we could get our picture taken later that day.

It was pouring out and my mom, sister and I went to Tess's Beauty Supply store in the Grand Avenue Mall. They had some wigs there for decent prices. I really didn't want a wig and the thought of having to wear one depressed me. I found one that was similar to my hair and then I found a long one that I could wear for fun. My mom bought one for me and my sister bought the other. I don't know if it was the experience or that they were offering to pay for them that made me cry, but I got really emotional. Then we went shopping around the mall and had lunch. It ended up being a really nice time.

After I got home, I put on some make-up and got myself and the girls dressed in our jeans and t-shirts. We all drove out to JC Penney and I gave my husband one last chance to be in our picture, which he declined. The photo session went by really quickly and the girls were complete angels. Raine cried when it was over because she wanted to take more pictures. The pictures turned out beautiful but I swore I wouldn't buy more than I needed so I went with a one-pose package for $7.99. It was the happiest I felt in weeks.

This is the pose I went with

This shows our jeans (Skye won't wear jeans so she comprised by wearing a jean skirt)

My First Chemo Appointment

Friday February 27th was my first chemo appointment. I followed instructions and had a light breakfast - a bowl of cereal. Bryan took off work to take me and my grandma came over to watch the girls.

We arrived at the clinic a little before 9:00 and soon I was sitting in a burgundy leather remote control recliner. Bryan had to sit in a regular old chair. This was supposed to take 3-4 hours and I was not looking forward to have to spend that much time there.

A nurse hooked into my port but was unable to flush or draw from it. Two other nurses tried, including the clinic manager, but were unable to get it to work. They changed the needle three times and tried both sides of the double lumen port. They finally were able to flush, but not draw.

Dr. Howard came to take a look at me. She checked over both of my arms thoroughly, searching for what - I did not know. She noticed the veins on my right arm were more pronounced than the left. She ordered some radiology tests.

We called my mom to see if she could come watch the girls since we were going to be much longer than we thought and we don't like leaving my 82 year old grandma with the girls more than a few hours. She left work and went to our house, but my grandma wouldn't leave. She wanted to know what was going on at all times.

I was sent down to radiology and there an Interventional Radiologist flushed a dye thru my port while I lay on a table under an x-ray like machine. This procedure was to make sure the port catheter didn't have any leaks and was working properly. Everything looked good and one of the radiology nurses got the port to draw so I walked on down the hall to ultrasound and waited.

After what felt like an eternity, I was called into the ultrasound room. There I had to remove my shirt and the tech did an ultrasound of the right side of my neck, chest, and arm. I was surprisingly calm - usually these things piss me off to no end, the waiting and hassle but I just rolled with it. Finally I was sent back to the clinic where I found my poor husband worried out of his mind, stressed, and with an upset stomach.

I came back and sat in my recliner. They still had trouble drawing but once I turned my head to the left, it started working. They sent my labs and we waited. We were waiting and waiting. One of the nurses told me that they did find a blood clot around the port catheter and that Dr. Howard would come talk to me about it.

We were starving. I sent Bryan down to the cafeteria to get us some lunch. I could tell he wasn't handling this well. He brought back a big turkey and bacon sandwich and some pretzels and we split it. He mentioned his stomach was upset...again.

Finally Dr. Howard came to talk to us. I did have a blood clot and I would have to go on blood thinners until they take the port out - at the end of my treatment which was months and months away!

I had to start with Arixtra - a subcutaneous injection. They instructed Bryan on how to inject the shot into my belly fat. We would have to do this for a week and then have another ultrasound to see if the clot dissolved.

I could see that Bryan was feeling worse and worse and we had been waiting for hours. Finally they gave me a test dose of the Bleomycin. This drug can cause an allergic reaction and affects the lungs. I tolerated the test dose well so they started the rest of the dosage. I called my mom and asked her to come to the clinic and Bryan would go home. They switched places and my mom was with me for just over an hour while I had the rest of the meds. One of the meds was in a big syringe and was dark red. We finally left the clinic a little after 5:00. I joked with the nurses that I should've punched in.

Bryan had already gotten all of my prescriptions filled except the Arixtra which my mom and I picked up on the way home...a lovely $75 co-pay. She dropped me off and I could see instantly that Bryan was feeling better. My sister and brother-in-law came over that night and hung out with us. The first time I went to the bathroom I stood up and flushed, then turned around and noticed that my urine was reddish. I got really scared thinking my kidneys couldn't handle the chemo but then reason took over and I deducted that it was from the "red devil" medication. I had one wave of nausea around 9:45pm, but took a pill and it went away.

It was a very long day and by 10:30 I was wiped out and falling asleep in my rocking chair - like a little old lady I thought to myself.

The Investigation

Somewhere between all the tests and procedures, I talked to the Vice President/Chief Administrative Office of the hospital regarding the Mediport/Bone Marrow Biopsy fiasco. She assured me that they were looking into it and assured me that even tho my experience was a bad one, it would be helping future patients not to have to go thru the same thing. She told me that the head of Radiology was coming to their hospital to do an investigation as well.

When I met with Dr. Howard on the 20th, she did tell me that she had a phone conference later that day with everyone that was involved in my care that day to get to the bottom of why they couldn't do both that day.

On the 27th (my first day of chemo) Dr. Howard told me that she got an apology from the Interventional Radiologist and that he should be calling me, which he did.

I was very happy that he apologized to me and it felt good to know that the hospital took me seriously. It also felt good to know that I would be helping future patients.

Moving Right Along

Wednesday February 18 was my bone marrow biopsy. They gave me some ativan and numbed me up real good. Dr. Howard performed the biopsy and had some trouble because my bones were so strong. From everything I heard about bone marrow biopsies I was terrified, but she did a great job. All I felt was a pushing on my lower back. My husband told me she was really screwing that needle into my bone, but I was just chill on the drugs and laid there waiting for it to be over.

She told me that she was only going to draw from one hip because the Mayo Clinic called and thought that I may actually have Hodgkin's instead of Non-Hodgkin's. She was really hoping for Hodgkin's which scared me a little bit in case it wasn't. Mayo had to run a t-cell rearrangement before knowing for sure and she was told she would have results by Friday.

On the 20th, my husband and I met with Dr. Howard and we saw my PET scan which confirmed the areas of my armpit and neck and reaching down a little toward my breast. The lesions on my lungs did not light up so she didn't think they were cancer, but again they may just be too small to pick up on the scan. The bone marrow biopsy was negative which was a huge relief, but Mayo hadn't gotten back to her. She told me to see a dentist because chemo can affect your mouth. She wanted me to make sure my mouth was healthy so there would be no surprise infections. We small talked for a little bit to kill time, but then decided to go home. She called later that day to tell me that the results should be in my Monday.

I didn't put too much thought into it over the weekend. I didn't care. It sounds bad, but I was in the frame of mind that cancer is cancer and I'm not going to get my hopes up for a better cancer.

Saturday the 21st my parents, sister and brother-in-law, sister-in-law, and good friends Lisa and Brigitte came over while my grandma watched the girls and we did a big cleaning of the house. We hit every nook and cranny of our house in hopes to get rid of any and all germs and dust to that when my counts were low, I'd be less likely to get sick. It was hard work and I felt so blessed to have everyone helping us out.

Monday the 23rd came and Dr. Howard called me. I did have Hodgkin's and now that we knew exactly what we were dealing with, we could get started. She ordered a MUGA scan to check my heart function and a Pulmonary Function Test to check my lung function. I had these tests back to back on the 24th and then went home to brush my teeth before heading to the dentist.

My dental experience was a good one. The dental tech who cleaned my teeth had a lot of experience with cancer - her parents and her sister all went through it. She talked to me a lot about oral care during chemo as well as little tips that helped her family through chemo. She was very supportive and told me that I would get through it, but it would be the fight of my life. So I forgave her for tormenting my mouth.

My teeth and mouth were good and my tests were both normal so we set up my first chemo appointment for that Friday the 27th.

The night before I was quiet...thinking and trying to mentally prepare myself for the worst while praying for the best. I went to church and found great peace of mind there. Bryan and I talked about my feelings, fears, the kids. Here is a blog I posted on my Facebook and Myspace pages that sums it up what we talked about nicely:

"At this point in time, I am having a really hard time with all of this. I know that lymphoma is a very treatable cancer; sometimes even curable. I'm worried about the lesions on my lungs. I'm worried about how to talk to my kids. I'm worried that I'm going to miss a whole lot of their lives while I'm fighting the fight of my life. I'm worried about the financial ramifications. I'm worried that I don't have enough faith. I'm worried that I'm not going to be able to pull myself together to fight this fight. I'm worried that all that strength I once had is gone or not enough. My mind is all over the place and so I write. I write to get it out there into words. I write to vent. I write to make it real. I write to make myself feel better."

Mediport and Bone Marrow Biopsy

Because I awoke during the Mack anesthesia during my biopsy, Dr. Howard and I decided that we would do the Mediport placement and the Bone Marrow Biopsy together while I was knocked out. This was a huge relief for me - especially after the biopsy fiasco.

I took off of work. My grandma was babysitting the twins and I arranged for my dad to pick up Skye from school and bring her back to the house while my mom came with me.

I arrived at the hospital in the Day Surgery section, got on my gown, and sat with my mom. By now you can probably tell that I want my mommy all the time. There are several reasons for this. The first is that my husband isn't very good with stress and you'll learn later on. The second is that we wanted him to save his days for down the road - his job is very strict about taking off. And lastly, thinking or knowing you could die really makes a person want their mommy.

The nurses talked to me about how they would do the Mediport placement first, than Dr. Howard would come in and do the bone marrow biopsy. Next the Interventional Radiologist came in and I showed him my chest tattoo. We talked a bit about what was going to happen and where he would place the Mediport and then he left.

Shortly after they rolled me off to interventional radiology. They told my mom and I that they couldn't do the bone marrow biopsy because of a scheduling conflict (it had been scheduled a week ago). The nurse with me was pretty upset and I heartbroken. Rolling down the cold hallway I couldn't stop the tears pouring from my eyes.

We got into the room and the Interventional Radiologist and my nurse were arguing in a class room. I couldn't hear them but I knew then that he was the reason we weren't doing both. I just talked to him and he didn't even have the balls to tell me to my face.

The anesthesiologist came in smiling and ready and talked to me about his role. He was still under the impression we were doing both which confirmed for me that it was the Interventional Radiologist who was causing a problem. We talked about my waking up during my biopsy and promised me I wouldn't feel or remember a thing. I didn't. It was smooth sailing.

On the way back to my room, my nurse told me that I should write a letter to administration. She told me that I shouldn't have to deal with this on top of everything else and that I was too young for "this shit". I agreed. She also told my mother to write a letter, which she did.

My hair was caked with blood so I asked them for a shampoo cap. They had never heard of it so I asked them to call the ICU and they got one for me. The nurses were so happy to have learned about something new. I was pretty out of it so I just giggled like a stoner while my mom and the nurse washed me up. It was an odd combination of laughing and crying that I hadn't felt before. I just wanted everything to be over and to start treatment. I didn't want to go thru anything else.

Soon I was discharged and I went to the cancer clinic to re-schedule my bone marrow biopsy. It was now going to be done Wednesday February 18th.

When I got home I talked to my sister who used to work at the hospital I was being treated and she gave me a name of someone large and in charge to talk to. I immediately sent her an email and explained what had happened to me, why these procedures were supposed to be done together, what an inconvenience it was for me, that I have three small children and have to arrange for childcare, and I asked her for an explanation.

And so began the investigation.


(remember my dream?)

Here We Go!

The day after my oncology appointment I had a follow-up appointment the my Pulmonologist for my asthma. I told him about the lesions on my lungs and he took a look at my CT. He didn't seem too concerned about them because of their size. He told me they could be scar tissue from an infection or from coughing really hard. He did tell me that because of how small they were, if they were cancer they may not light up on a PET scan. He made me feel a little better about them, but I was still pretty worried about it.

Saturday February 14, 2009 I had a PET scan at 6:30 in the morning. My drive there was the first time I had been alone since they found the mass. I quickly learned that I could not be alone without crying.

The scan was boring. They injected me with a radioactive dye and I had to sit in a dark room for awhile. Then they came and got me. I laid on the machine with my arms over my head and went back and forth for about a 1/2 hour. Since the test was at St. Luke's and I had to work, I went right to work after the test.

At this point everyone knew what was going on with me. There were the sorrowful looks, tilted heads, "I'm sorry's", and questions. Questions that I had a hard time answering. I was still a in a bit of shock over the being dead in six months fact and still overwhelmed. Everything was happening so fast it was hard to digest it all. I have always had a hard time crying in front of people and so I relied on my friend Ben who worked with me every weekend to entertain me. Unfortunately, I don't think he knew how to act around me now and he seemed to have a hard time stirring up the same ruckus we usually had going when we worked together. So I sat at my desk, alone with my thoughts and it was a slow, slow day. I had a very hard time keeping myself together. Finally the day ended.

When I got home, the girls and I made our traditional heart-shaped pizzas and heart-shaped chocolate chip big cookie for our Valentine's Day celebration. We had a nice evening.

The next day was Sunday and I had to work again. Again I sat alone with my thoughts fighting back the tears. I wished I didn't have to work. I couldn't handle this while I was there. There were too many tests and procedures to be done, too much emotion inside of me. I have to fight the fight of my life and take care of my kids and take care of myself now and have all of these appointments and treatments and I just didn't know how I could do it all.

I decided to go on leave from work. Emotionally, I couldn't handle being there and I had been taking off so much for all the appointments and tests that I was running out of PTO. I thought it would be better to go on leave and get 60% pay, than have to take off all the time and not get paid at all. I knew I needed to refocus my energy on myself and I knew it would be hard with three young children and my job, even tho it was only part-time, was just adding to the stress of it all.

Oncologoy Appointment

Nothing could have prepared me for this appointment. You would think that the worst day of my life would've been the day they told me about the mass, or the day I was told my biopsy results showed lymphoma. Those days were nothing compared to this day. This day that brought the biggest slap in the face a person could receive.

Remember I told you that my neck was hurting, as if I slept on it funny and that I massaged it, thus feeling the swelling? Remember how I wasn't going to call the doctor, but that something inside of me nagged me to?

After the nurse took my initial information, Dr. Howard came and sat down with my mom and I. She went over the biopsy results. I had Large Cell, T-Cell, Non-Hodgkin's Lymphoma. She told me it was a rare type so they sent my pathology to the Mayo Clinic. She talked about it being a very treatable cancer. She talked about the areas that the cancer was in and mentioned that my CT showed three small lesions on my lungs that we're going to have to keep an eye on when I have the PET scan. As I was starting to feel overwhelmed and things started getting fuzzy, she said these words to me: "Without treatment you would be gone in six months".

Nothing can prepare a person to hear those words. It didn't matter that I was in the doctor's office talking about treatment. It didn't matter that I would be starting treatment very soon. Those words echoed into the very core of my being. I couldn't help thinking "What if I hadn't massaged my neck that day?" "What if I didn't call the doctor?" I would be dead by August 2009. I wouldn't see my daughter's sixth birthday or the twins go to K4. I couldn't stop thinking about all of these things - these "what if's". I'm so glad my mom was there to pick up the slack of my temporary vacation from the appointment at hand.

So the plan was to get a PET scan to tell me what stage I was, get a Mediport put into my chest, have a bone marrow biopsy, and then meet back with Dr. Howard in a week and a half to go over the results of everything.

Before I could go, they drew so much blood that my vein dried up on them.

When we left, I felt worse about the cancer than ever but my mom was very positive. We met my sister for lunch and I had a beer. Then we went to the surgeon's office so he could check my wound. He walked in the room, and said "you have lymphoma". Nice bedside manner. I told him that I already talked with my doctor about it, he felt my armpit - ouch, and that was it for that.

I joked with my mom and sister about it having to rain on the worst day of my life. I was clear now that this was going to take over my life for about six months and it really was the worst day of my life by far.

The Results

The biopsy was on a Thursday and by Monday I was going out of my mind waiting for the results. I had an appointment for Wednesday February 11, 2009 with the surgeon as a follow-up but couldn't wait until then, and deep down I didn't want him to give me the results.

Monday morning was Muffins with Mom Day at Skye's school. That was a welcome distraction. I also had to work on that night, another nice distraction; but it was very hard to focus on anything. Not many people knew what was going on with me at that point so I didn't have to deal with the looks of sympathy and fear.

The next day was Tuesday February 10, 2009 - my parents 36th Anniversary. I had to work that night too but didn't care, I couldn't wait another minute and I figured that I already knew and I could handle it. I was wrong. I called my doctor's office first thing and left a message playing stupid..."I was just wondering who is going to give me the biopsy results". He called me back within the hour and told me that the biopsy results came back and I did have lymphoma. He told me that he contacted Dr. Howard and her office would be calling me to set up an appointment for the next day. He kept trying to talk to me to feel me out but I just thanked him and hung up. I called my husband and told him right away. I was in tears, but not quite crying. I believe things were still slowly sinking in. I hung up with him and then made my next call to my boss. I wasn't crying when I dialed but by the time she picked up her phone I was in hysterics. She was going to send someone over so I wouldn't be alone, but I told her that I would call someone.

Bryan called me back and told me that he was on his way home. Thank God. I just wanted to go to sleep. I didn't even care if my kids saw me. I just sat down and cried and cried and cried. They didn't notice and I was glad for that. It wasn't long before I started feeling a panic attack coming on - the shortness of breath, the hysteria. I took two Lorazepam's to calm me down and by the time Bryan got home I was back to just silent tears.

My sister and mom had emailed me asking if I heard anything, but I didn't want to tell them in email while they were at work. Once I had my appointment with Dr. Howard set, I called my mom and asked her to take off to take me. Again, she was a rock on the phone with me.

I don't remember much else about that day, just that it was a very ugly day.

The Biopsy

The day after the twin's birthday was a Saturday. I had to wait the weekend before meeting with the surgeon and I had to wait all day to talk about what was going on with my husband. I didn't dare speak of it in front of our girls. I didn't want them to know anything until after the biopsy. I didn't want to have to explain everything and then it be for nothing if the biopsy was negative and it was obviously still too close to the twin's birthday.

I had nothing to do. The party was over and I had nothing to focus on. It was like torture just waiting in silence.

Finally Monday came and I met with the surgeon. I had to take off of work again for this appointment. Thank the Lord my manager is a Saint. I didn't care for the surgeon. He had removed my gall bladder in 2003 and had little bedside manner. I did know that he was a good surgeon tho and didn't really care to look around at this point. He felt around my neck and my armpit, told me he'd take the biopsy from the armpit because the neck was too risky, being wrapped around that artery. He told me if the armpit was negative, they would have to go back and do another biopsy on the neck. We scheduled the biopsy for February 5th - just three days later.

Tuesday February 3, 2009 I had the CT of my chest, abdomen, and pelvis. That was weird...they injected a dye into me that made me feel like I was peeing. It was a quick procedure and I was glad for that.

Things were moving along, but in slow-motion. Everything was spinning around me so fast, but not fast enough. I wanted this over. I wanted the results. I wanted to know my fate. I wanted to know why this happened to me - how this happened to me.

Thursday came, and we went to St. Francis Hospital early. The nurses were very nice, explaining everything. I was going to have "Mack Anesthesia". I would be awake, but I wouldn't know it. Afterwards doctor would come talk to my husband and give him instructions. I also gave my husband instructions - NO Vicodin! That stuff makes me feel like I'm out of my mind!

They rolled me away and I was strong and confident. Everyone was very nice...even that lady who told me no more tattoos and insinuated they caused my cancer. People are so ignorant sometimes. The anesthesiologist was especially sweet and held my hand and I slowly fell into the Mack. The surgeon cut into me and I felt every bit of it. I woke up, tears pouring down my face into my ears, only able to moan "owwwwwww". Everyone in shock and rushing to get me back "under", wiping my tears, holding my hand but I couldn't stop my mind from panicking. And then everything went dark. I remember feeling a sense of relief as it did. They started cutting me again and again the tears rolled down my face and I moaned and everything stopped. This time I was able to choke out "It hurts". This time I really had to reach deep not to go into a complete meltdown. There was more scuffling, more tear wiping, more talking calmly to me, more handholding, and finally everything went black again.

It was over and they brought me back to. They showed me the piece of lymph node they removed. It was like the flavor egg in Mrs. Grass soup, only white and black in the middle. They rolled me back to my room and I couldn't stop crying. I didn't sob, but tears would not stop pouring out of my face and I couldn't bring myself to speak to tell my husband or the nurses about my horrible experience.

My husband knew nothing because he "couldn't understand the doctor" and of coarse, Vicodin was the doctor's choice of pain medication. The nurses called the surgeon and he said to just take ibuprofen - fine by me...until all my meds wore off.

The next day I was in so much pain and of coarse the surgeon was off. I talked to the covering surgeon who told me to go do the ER if I was in pain. I called my doctor's office and they prescribed me some good old fashioned percocets. I was thankful that I had taken this day off of work too. I kept wondering why no one could ever just listen to me and give me what I wanted. Why I had to call all over tarnation to get a pain pill when I just had surgery. And a small rage was born inside me about the subject, only to be fueled by looking back over my experiences and a gift from my good friend Brigitte - the book "Everything Changes The Insider's Guide to Cancer in Your 20's and 30's" by Kairol Rosenthal.

The Kindness of Strangers

January 30, 2009 my beautiful twin daughters River and Raine turned 4. I had the weight of the world on me that day but was determined to get thru it all without them even sensing that something was wrong.

We got up, got dressed and the five of us headed out to IHOP for breakfast - twin's choice. We ordered and after a very chaotic breakfast the waiter brought out ice cream and the waitstaff sang Happy Birthday to the twins. Bryan was being particularly quiet. He wasn't even irritated at all the chaos that is eating out with our girls. When the twins were finished with their ice cream, the waiter told us that a couple wanted to pay for our breakfast but wanted to remain anonymous. We couldn't argue, it was already said and done. Tears filled both Bryan's and my own eyes. At the time I was just overwhelmed with their kindness, but looking back I think it was God's way of telling us that he was going to take care of us.

When we returned home, there were messages from my Aunt Nancy and from our Pastor. I swallowed my tears and refocused my energy.

The random act of kindness at IHOP gave me the strength to get thru the rest of the day, back in party-mode. I cleaned, I decorated, I made food, I did it all and enjoyed all of the work I had ahead of me. We made some phone calls to people that would be coming over and asked them not to mention anything for the kid's sake. I held it together and even let myself hope that the biopsy would be negative.

The twins had a great party. I drank a lot of wine. I knew that after this day, I wouldn't have a party to focus on and my mind would go right back to that dark place it had been. But for tonight, I was going to enjoy myself. I didn't know how much more enjoyment my life would hold.

2009: The Beginning

Well, 2008 was a horrible year filled with health problems and stress and 2009 was going to be the "Year of Me". I was going to do it, get in shape and be healthier. So I was still a little pissed off about having asthma...knowing it would be a life-long hindrance. I could work around it. I would work around it.

Little did I know what 2009 really had in store for me. On January 21, 2009 (one year and 3 days cigarette-free), my neck was hurting on the right side. I thought it was a kink from sleeping funny and I started massaging it. I could feel that it was enlarged - not a lump, but a swelling maybe. I figured it was nothing. You should know that I've had three ultrasounds on my thyroid over the past four years because the right side is bigger than the other. All of these ultrasounds were normal. I thought "it's probably just my thyroid"; but as I pressed on the swollen part, it went half-way down my collar bone. I kept telling myself that it was nothing. I was sick of going to the doctor. I was sick of those nice little post-cards with the "normal" box checked. I was not going to go in there for this. It nagged at me. I had a sinking feeling about it as the day went on. Something inside of me kept telling me to just call the doctor, so I did.

I saw him on January 22, 2009. Honestly, I couldn't get a read on him. You'd think I'd know him pretty well by now. He didn't seem too concerned about it, but could feel it. Because of the past ultrasounds being clear, and because he didn't want to put my young body thru the radiation associated with a CT scan, he ordered an MRI. I had the MRI on January 28, 2009 and left there pretty confident that I would be getting my "normal" card in the mail within a week.

I had a birthday party to plan - my twin's 4th birthday. We were having people over on the 30th for cake and ice cream. I had to clean my house and bake two cakes. I had lots to do, and on January 29 - just one day before my twins birthday - I was doing it. Cleaning, prepping snacks, decorations, cakes. I got a call from a number and name I didn't recognize and I'm telling you I was not going to stop my party-mode for a wrong number so I ignored it. About an hour later they called again; this time leaving a message. It was my doctor's nurse asking me to please call as soon as possible. I started to shake; slowly on the inside at first and then outwardly and my whole body. I had a horrible feeling of fear in the pit of my stomach but it was too close to when I had to pick my daughter up to call back yet. I picked up Skye (my five-year-old) from school.

I called back the nurse and she told me that Doctor wanted to see me that afternoon at 3:15. That's it. That's all she would say. I knew something was very wrong and by body confirmed it with all kinds of horrible feelings. I called my husband and he told me that they called him at work trying to find me. I remember wishing he hadn't told me that because it just confirms that I'm right. For once, my husband, Bryan Jankowski was positive. He told me it's probably nothing and even tho I knew better, I let him think that. I called my mom, crying at this point and she took off work early to take me to the appointment. It's a long wait between 11:30 and 3:15. I canceled the twin's 4-year check-up appointment. I tried to clean. I tried to get back into party mode. I couldn't do anything but cry and I had no idea what I was even crying about yet.

Mom and I went into the office together. I was terrified. She was a rock. Doctor told me that there was a mass in my neck wrapped around an artery. I couldn't think straight, I couldn't focus. Tears rolled down my face as he talked about Lymphoma, Hodgkin's vs. Non-Hodgkin's, my age, Dr. Howard and her personality being a good match for mine, not believing it, and being sorry. I just looked at him, crying. He asked me if I could meet with the surgeon the next day. I shook my head "no" and my mom told him that it was the twin's birthday tomorrow. I just kept thinking that I didn't want them to forever associate their birthday with my getting sick.

So to translate my blur of an appointment, they found a mass in my neck that reached down under my armpit and possibly reaching into the breast area. The radiologist and my doctor thought lymphoma so he contacted Dr. Howard knowing I would like her. She confirmed that it is most likely lymphoma, probably Hodgkin's which is better than Non-Hodgkin's. It's a very treatable cancer. I will have some baseline labs drawn and set up an appointment with a surgeon for a biopsy. If it is lymphoma, I will meet with Dr. Howard. That was the plan. I will also have a CT of my chest, abdomen, and pelvis.

My cell phone was constantly vibrating between my sister and husband calling. I didn't answer. They drew some blood. They tried about 15 times to do an EKG before getting it right. Then I talked to the surgeon and set up my consult appointment for the following Monday, February 2nd. My mom asked the doctor if he could give me something to help relax me and he prescribed .5mg of Lorazepam - not too much, but enough to take the edge off.

I finally answered my sister's call on the way home and told her what I could. Looking back, I think she took it harder than I did.

I want to say it again: My mom was a ROCK. She didn't shed one tear in front of me. It really surprised me because she is a cryer but she held her shit together until she dropped me off. She told me later that she broke down as soon as I got out of the van. I needed her to be that way and she knew it.

I went in the house, and was unable to muster the words together to talk to my husband. I told him that I'm not fine and that Doctor would be calling him to explain things better. Obviously he couldn't accept this explanation. I told him I probably have cancer and that's all I could say. Now that the appointment was over, I threw myself into the party. I refused to cancel it. I stayed up late decorating those two cakes and focusing on them really helped me make it thru that first night...well, that and the Lorazepam.