A Tale of Chemo Brain

Sunday I took meat out of the freezer and put it on the counter to thaw out with the intention of throwing it in the crock pot on Monday morning. Today (Tuesday) as I was leaving for work, Bryan held it up to me and asked me how long it's been sitting out. Shit.

Blah, Blah, Blah

Call it a recurring thought, daydream, vision, fantasy, fancy; whatever you want, I have one. I feel like a walking episode of Scrubs - or maybe Ally McBeal would be a more accurate depiction. At any rate, I can't get it out of my head. It's like a song that I really love, but it's stuck on repeat. Sometimes, it's almost so real I can taste it...smell it...uh, feel it maybe? I'm afraid the line between my head and my reality may cross. Not that it would necessarily be a bad thing...maybe it would, I don't know. I just liked it better when the two were completely separate. It tortures me.

I want a piano. I want to learn to play. I took lessons as a kid, but hated it. I didn't like my teacher and I didn't like the pressure from my parents to practice and I most certainly hated the recitals. But now, I could play at my leisure, learn at my own pace, play what I want to play rather than Mary Had A Little Lamb. I would just need a quick refresher on note reading and I could probably take it from there. That's what I want.

And riddle me this: when I am looking for answers or signs, how do I read and interpret them? A repeating name for instance - is it a "yay" or a "nay"? How about a car or a song? A "no" or a "go"? I suppose by my being so vague, I sound like a damn riddle myself. Shit. I do know that if you look hard enough, you'll see what you want to see but I'm not looking all that hard and they keep slapping me upside the head. It's become quite an annoyance.

Christmas is a few days away, and then the new year. I can't wait to be rid of 2009, it's no secret. And although I feel that 2010 couldn't be much worse, I'm afraid to say it out loud. I don't want to challenge the new year or tempt fate. I'm looking forward to this year. I'm hoping there are lots of changes this year - especially in the fall when all the kids will be in school full-time. I have lots to think about.

And finally, I've come to think of my chemo brain as a black tornado-like vortex where information and memories are sucked away forever. Some things I can imagine myself swimming down into the vortex and pulling the information back out and other things I have to get the fuck out of there before it swallows me up too. I guess that sounds worse than it is, but it is the picture in my head of where my memories are. Thank God for timers - it's dinner time.

Christmas Lights and Memories

This year, I'm finding Christmas lights to be the most beautiful thing I've ever seen - as if I've never seen them before. They make me cry. Christmas music irritates the shit out of me, unless it's Christian christmas songs - then they make me cry. Christmas displays and aisles at the store irritate the shit out of me, but I'm finding Christmas shopping very relaxing; which is completely out of character for me.

It seems like a lifetime between my life pre-cancer and my life now...literally. I don't know if the gaps in my memory are getting worse, or if I'm just noticing them more because of how emotional and sentimental I've been. When I look back on even the most recent of pre-cancer memories, they seem so far away and I really have to focus to find them. I find myself wondering if you can forget feelings, or forget how you came to feel the way you do about something or someone. Some of my feelings seem to have changed for no apparent reaason. It's frustrating and I feel shitty and guilty about it, but I can't help it. There are some pre-cancer memories that are very clear and seem very "present"; as if they happened post-cancer. It's almost confusing and I need to remind myself how long ago that was. Sometimes I feel like I'm all kinds of fucked up in the head and sometimes I feel completely normal with just a few quirks. The truth is probably somewhere in between the two.

Tomorrow is our annual 4-generation cookie bake. As always I'm looking forward to it. Baking with the ladies I love the most: mom, sisters, grandma, aunt, and daughters. This year my cousin's fiance' will be joining us with her daughter. I like that it's just the girls and no boys are allowed. I wish more things were like that in life. Still, there are times like that - moments when everyone is happy in their way that I look around and feel so different from anyone else. I know that they couldn't possibly ever understand me, the way I am now. Hopefully with time, those thoughts won't cross my mind as often.

Small Funk

If only I knew then what I know now about love and life. Seriously.

Test results and rambling.

Sometimes I wish I knew who reads this shit. When I put something in here, and then tell someone the same thing and they say "I know, I read your blog", and I feel a level of embarrassment depending who it is. But hell, I never really cared what people thought anyway. Still, there are a few things I'd like to blog about - to get them out but I just never know who's going to read it.

About a half hour before I left for the doctor today, I suddenly felt very positive and sure that everything would be fine. I tried not to let myself get too high off of the feeling because it would be quite a fall should I get bad news. As I drove, I had tears in my eyes the whole time and was overwhelmed by the surge of emotions running thru me. The thoughts going thru my head wavered back and forth between practical and ridiculous. I was feeling highly annoyed by Bryan's constant pestering about how I'm feeling - even after I told him 150 times I didn't know how I felt. Of coarse HE was going out of his mind. I wondered if it was because he loves me or because I'm a burden. Should I even be asking myself that question? Probably not out loud.

I got there, weighed in, sat down and updated the nurse on what supplements I'm taking, what pains I'm having, how my energy level is, blah, blah, blah. Can we get on with this shit? I had a list of pains - all on my right side, all stemming from my neck. Neck, shoulder, shoulder blade, arm, hip, shin. The nurse thought it could be from the chemo still. I guess having poison running thru your veins for 6 months can take it's toll on the body.

Then I waited. And I waited. I didn't even hear Dr. Howard in the office. And then, I heard the nurses saying she was down in the lab looking at some tests. I was getting agitated because my mom was on her lunch break watching the kids and it was already a 1/2 hour past my appointment time. I guess that didn't bother me as much as having to wait for this "news". I read a prayer that was on the wall over and over and over. It went like this:

"One day at a time sweet Jesus, that's all I'm asking from you.

Just give me the strength to do every day what I have to do.

Yesterday's gone sweet Jesus and tomorrow may never be mine.

Lord help me today, show me the way, one day at a time."

Finally I heard her come back into the clinic. I heard her giving some bad new to someone, although I couldn't understand much of what she said with the door closed. Then there she was standing in front of me, looking down and she said "well your CT was perfect, but you're having all this pain." She looked at me, we talked, she checked me out some more, and we talked some more. So she prescribed five days of anti-inflammatories and if the pain doesn't get better, then I'll have to have some more scans. My MUGA is the same and my labs are good. So for now the news is good. There is a huge part of me that is thrilled and wants to exhale, but there is still that part of me that doesn't trust a fucking doctor as far as I can throw one.

I'm exhausted. I haven't been sleeping in my bed. I spent a night on the couch, a few in Raine's bed, and last night he slept in the basement. I was so glad to have my own bed back, but it didn't last long. I went to bed around 2am and the kids woke up at 5:30. Sleep hasn't come easy this last few weeks either - with his snoring, the fear of the tests, and all of my inner turmoil. I'm hoping to sleep a little better tonight; although I'm not sure where I'll be sleeping. He made a doctor's appointment for the snoring - I'm not sure when it is. I think I'm getting spoiled, sleeping by myself tho.

All of this emotion has brought back my inner poet. I don't remember it being hard. I guess it isn't that hard; maybe I'm just rusty. I have everything I want to say down pat, but I just can't get it to flow the way I want it to. Whenever I do get it flowing well, I come to a line that just junks the whole thing. It feels good to put my wants and desires into words and see them come to life. I've also busted out the old Jim Morrison poetry. I thought I wouldn't like it anymore now that I've aged, but a lot of it I like even more than I remembered liking it to begin with.

And now I'm rambling because I'm tired. I shall turn in my keyboard for the night.

Happy Thanksgiving!

Waiting

I've been all over the place this weekend. Up on the highest high, low in the lowest low...if that makes any sense. It does to me.

Not only am I driving myself crazy with thoughts of cancer, I'm also dealing with some deeper feelings that I could blame on my having cancer - my viewing my life as much shorter than most people view their lives. I'm full of selfishness but full of guilt. Part of me is soaring with life and love and part of me feels like a caged animal ready to attack. The two personalities I joked about having for so long and coming into some sort of reality wrapped up in all these emotions I haven't had to deal with all at once. Some of these feelings I had pre-cancer, but they were more controlled. Now they're running amok inside of me causing me such turmoil.

I'm feeling poetic - inspired to write again; yet I don't want to share it with anyone. On the other hand I feel so alone because who could possibly understand what I'm feeling?

Enough emo bullshit (pulling myself together)...Friday was test day. They poked me to draw blood for a bunch of lab tests. It was one of those days where my vein actually hurt - like it was running out of blood to give. Unfortunately the Nuclear Med tech just missed me at the clinic, so he had to put an IV in when I got to him. The MUGA scan is a pretty boring procedure. He puts in an IV, draws some blood mixed with a little heparin and then I wait while he adds a radioactive tracer to it. About a 1/2 hour later, he re-injects the blood with the tracer and then I wait about 15 more minutes. Then I lay on a table while they take 3 pictures; each picture having like 80 pictures in it. This part takes about 35-45 minutes. During my waiting period, I downed two huge bottles of banana barium. I hate artificial banana. My tummy made me pay for it. When all that was done I went to CT for scans of my chest, abdomen, and pelvis; which made no sense to me at all. I was told I would have CTs of my whole body. I called them today and they're looking into it.

Bryan's snoring has been unbearable. It could be me and my inability to sleep while I play the waiting game, but he's louder than ever. Saturday morning I stormed out of the bedroom and slept on the couch after beating him with a pillow and getting no results. (I didn't really beat him, I only him him once or twice with the pillow). Saturday night he slept on the couch so I could get some sleep. Last night as I sat at the computer on the opposite end of the house, I could hear him loud and clear so I slept with Raine in her bed.

Oh and since I mentioned I was questioning the size of his heart in my last blog, my latest story is this: We were walking to the school for parent teacher conferences and he asked me if I was nervous about my scans. I told him yes and he said "Like I'm not?!" I apologized to him saying "I forgot this was all about you". He said I was twisting his words. I don't know if he just doesn't know how to be, or if it just came out wrong but to me, right now, I want more than that.

3-month scans are coming up fast

I regret stopping my blogging. I've been dealing with so much. There is a part of me that is pissed off that I am just back to my mediocre life. I want more, but I want it now, not later. I don't want to wait for it, work for it, etc. I feel like I don't have time for that shit. I feel like I don't know how much time I have.

My scans are Friday. I won't get the results until the next Wednesday. I am paralyzed with fear. I have people asking me to make plans. I cannot commit to anything right now - I'm frozen in this period of waiting. I cannot mentally commit to anything. 75% of my thoughts bring tears to my eyes. I can't find much joy around me. I feel like I'm stuck in a black hole waiting.

In the last few months I have developed several pains - my left heel, my right hip, shoulder, neck, and arm. My right arm tends to fall asleep way more often than it should. Last week I went and demanded doppler to rule out a blood clot - there was none. I don't know if these pains are side effects of the chemo or a mental thing or completely unrelated. I have a list for Dr. Howard.

And speaking of the side effects of chemo, I have a mild case of "chemo brain". I've been reading up on it. The symptoms include:

-forgetting things that they usually have no trouble recalling-memory lapses
-trouble concentrating - they can't focus on what they're doing
-trouble remembering details like names, dates, and sometimes larger events
-trouble multi-tasking, like answering the phone while cooking without losing track of one of them-less ability to do more than one thing at one time
-taking longer to finish things-slower thinking and processing
-trouble remembering common words-can't finish a sentence because you can't find the right words

I do not have all of them, and some of them are only mild. I can't imagine what some people must go thru. My daughter asked me to tell her a story that I used to tell her all the time - an easy story that I made up and I couldn't remember it. I had to really focus and mentally swim thru my mind to find it in there. It was pretty scary. And still I have limited myself to cooking only when there is another adult in the house - the symptom up there about the phone and cooking is definitely one of the stronger symptoms I have.

I've been thinking a lot about a recurrence and I don't think that I have it in me to do it again. I'm trying to think positive. I'm trying to focus on the good things in my life. The closer it gets to Friday, the harder it is to be positive. So I guess I was right about living in fear. At least in the beginning. Hopefully it will get better with time.

I think the worst part of all of this is that my husband has absolutely no idea - even when I explain it to him. If I say something about him not doing something I asked (he didn't do it 'cuz he wasn't listening), he says "like you never forget anything". Touche'. I do. Unfortunately it's all the poison that was pumped into my body that caused my memory lapses. And do you think he would get that this is a bad week for me? Do you think it would even cross his mind? Of coarse not. Not without my holding up a big neon sign in front of his stupid face. I find myself again questioning the size of his heart.

Post-cancer trauma...er maybe drama is a better word?

This morning Pastor gave a sermon starting with people's love of sports and speculating why "we" are so into sports. One speculation was that we crave that taste of victory - something we don't get to taste all that often in our daily lives. He went on to speak about how we feel defeated and the things that can make us feel that way: doing the same thing day after day with nothing to show for it - comparing life to laundry or doing the dishes, he talked about how some of us may be defeated by the same sin over and over, he talked about real life, and asked "what is the point?". He went on to talk about the victory we have in Jesus, but I'm still stuck on the part about feeling defeated.

After everything I have been thru, it all became clear to me sitting in church this morning. The way I've been feeling, the way I was afraid of feeling while my cancer treatment was ending - all came to light. I am now back to the same old life I had before and I'm wondering "what is the point?" I'm back to the same depressing job, the same too small house, the same debt - no, even more debt, the same lack of communication, the same grind of life, that same pile of never ending laundry. I still have no idea what I want to do with my life - what I want to be when I grow up and I wonder day in and day out what it was all for! I have one of those sins, the one that can't be defeated no matter how hard I try and it's gotten even worse since I've gotten better. I've heard over and over and over again that everything happens for a reason. Well, for what reason did I get cancer? For what reason did I go thru all of the shit that I went thru? Why? I am no better of a person. I am no stronger.

I'll tell you what I am now. I am a paranoid freak. Every time I get a pain in my neck, it brings on a full body search for lumps and bumps. Every time my arm falls asleep I'm afraid I have a blood clot somewhere. Every time I yawn or fall asleep during day light I'm praying to God for my life. I'm also selfish - yes, I said it. I feel so selfish. I want to be selfish. I feel like I deserve a fucking break and I should get it. The problem is, being selfish is not in my nature, so I'm at odds with myself constantly. And then there is the unanswered question of my life...how long will it be? Should I continue this daily bull shit that has been driving me insane as of recent or should I go out and shake it up? If I'm stuck in this too small house, why should I pay my bills on time? Fuck my credit score! I feel like my head is all messed up and twisted around and I'm constantly in conflict with myself. Thank God for my kids or I'd probably be bungee jumping naked off a waterfall on some tropical island. I'd probably go completely insane if they didn't keep me so grounded.

Perhaps all of these crazy feelings are normal for a cancer survivor and perhaps they're not. I just wish I could find that reason that it happened to help me wrap my head around the whole experience. Perhaps just writing this will help me to sleep and I'll wake up refreshed and rejuvenated and ready for the world again.

It's Finally Over!

I saw Dr. Howard today and will not have to follow-up for three whole months! What a relief! I'm very emotional - crying at every little thing - tears of joy and tears of sorrow and tears for fears. It has been a long, horrible road and I am so glad it's "over".

But it really isn't over, is it? I want to prevent a recurrence and definitely want to prevent a new cancer. In order to do this, there are six rules I must follow for the rest of my life - until I'm 65 at which point I'm going to start smoking and doing whatever the hell I want. I'm typing the rules exactly as Dr. Howard wrote them. They are not her rules, but rules set in place after numerous studies have shown that they help prevent recurrence.

1. No Smoking (I haven't had a cigarette in 1 year and 7 months, but I still miss it)

2. Alcohol - in moderation or not at all (I only drink on occasion, but when I do - oh boy)

3. Exercise - aerobic minimum of 3 hours a week, preferably 5 or 6 (This is something I planned on working on anyway now that the kids will all be in school, but will take me awhile to get up to this amount of time)

4. Low Fat diet:
- less than 20% calories from fat
- good fat
- limit red meat; beef, pork, lamb, venison, and bison (this is going to be hard - I love red meat, hate fish, and am not a huge fan of chicken)

5. Maintain body weight BMI of 24 or less (this is going to take some time and hard work that I had planned on doing anyway)

6. Maintain adequate vitamin D levels (should be o.k. after my 50,000 units per week x 8 weeks and now 2000 units a day)

So those are my new life rules. They are all part of a plan I've been trying to implement for the last two years only to be foiled by illness. It's going to be a tough battle and it's going to take time to find what works for me and make adjustments. Dr. Howard told me to do it in baby steps which is exactly how I had planned on it anyway. Hopefully by my 3 month follow-up, I'll be in a good flow with everything.

Part of me feels it is unfair that I have to be different from most people my age. Most people my age do not have to pay so much damn attention to every single little thing they do. Most people my age workout but aren't having to follow a number of hours. Most people my age are eating healthy but not having to measure and worry about having a steak. Most people my age can go out drinking and have a good time and not have it in the back of their minds that they have to limit themselves. I will forever have to be different and not in the way I like - I will always be looking over my shoulder (in a sense), watching and waiting.

So I suppose I won't be blogging here much anymore, but I fear I will miss blogging so I may just start an "A Lighter Side of Me" blog to track my progress with my journey to a healthier me, or maybe just a general blog to rant and rave. Who knows?

Feeling Fine

Friday I was going out of my mind crazy waiting for 1:15 when the VNA nurse would arrive to disconnect my last IV bag and pull my PICC line. I was like a kid waiting for Christmas. I kept pacing back and forth and checking the clocks. Finally I laid down on my bed and read until about 1:05. Then I kept looking out the door. She was late. She didn't come until 1:20. It seemed like it took her a lifetime to get settled and set up but she finally disconnected everything and then pulled the line. It was weird. My husband watched and I watched him. I could feel it running thru the vein in my arm, but thankfully I didn't feel it in my chest at all. I had the heeby jeebys big time!

After she left I took an amazing shower - probably the best shower I've ever had and by the time I was dressed my mom and dad had arrived. It was time to go camping! All weekend I kept getting choked up, teared up, just thinking that I'm done with this shit. I was so happy and they were tears of joy but I tried not to think on it too long because there is still so much fear in me. Right now I am cancer free and done with treatment and just that thought overwhelms me with joy to the point of crying. But thinking about my experience at all brings out all of my fears, fears for the future, paranoia with every little twinge of pain. I wish I understood more about my cancer - where it started in my body. Did it start around my lung or did it start at a different point. Did I have "lung cancer" or was it lymphoma around my lung? Does anyone even know the answer to these questions?

I'm really looking forward to what I hope will be my last appointment with Dr. Howard for awhile. I see her Friday (after taking my three girls to the dentist). I have some questions for her and I will feel better once we have a plan for my follow-ups and talk to her about this whole lung thing. I already know I was an "odd case" but I'd really like her take on it.

I've been thanking God every time my eyes fill with tears, and that has been a lot since Friday. I feel so blessed to have the people that I have in my life and just happy - like a great weight has been lifted.

I haven't had a cigarette in a year and seven months and I will still swear that quitting smoking ruined my life.

Radiation

I saw Dr. Ziaja today to discuss radiation. She showed me my PET scan from February and I don't know what the hell happened that no one noticed this, but my lung was lit up like a Christmas tree. There was lymphoma around my entire right lung and part of my left and yet it wasn't mentioned in the report, nor did my oncologist catch it. Anyway, I will NOT be having radiation!!! Not for good reason though. She explained it like this: think of the radiation beam as a flashlight - it has to have an entry point and an exit point. In order to get the spots around my lung, she's have to radiate thru almost the entire lung and that would cause permanent damage. She told me that they usually give radiation after chemo for Hodgkin's patients to ensure that the Hodgkin's doesn't return and that a handful of people don't really need the radiation; so she doesn't want to damage my lung when I may not even need the radiation. My PET scan was completely clear after four treatments (8 sessions) and I've had 2 more treatments (4 sessions) since. She told me that Hodgkin's is the kind of cancer that if I have a recurrence, I can still be cured of it; unlike other cancers in which a recurrence means you're doomed. She also told me that because I'm being monitored so closely, we could radiate if it did return in whichever lymph node but said we'd cross that bridge only if we come to it. She seemed very confident in her decision and radiated positivity. When she showed me my PET scan from June I got really choked up to see the difference.

After my appointment I went to my unit to visit and got a very warm welcome from everyone. They can't wait for my return and I'm really looking forward to it as well.

On the way home, I couldn't help but crying but I was smiling at the same time and I kept looking up and thanking God that it was finally over. Well, not totally because I have this IV pump until Friday and then I have to worry about my counts doing a final drop and I see Dr. Howard next week Friday to go over everything and work out my follow-up plans. But still, it's over and I will be back to my life very soon. I just hope I can get over all the fears I have developed, and all of the mistrust for doctors that I've come to have. I'm sure those things will take time, but for right now I'm just happy to be done!

Oh, and here's a story just to prove that nothing I've had done regarding this cancer has gone smoothly the first time...

I woke up this morning and the arm band I use to hold my catheters against my arm had orange stuff on it. I smelled it and thought it smelled like fruit and figured I probably ran my arm across a melted popsicle or something. Later as I went to the bathroom I was leaning my arm on my leg and when I lifted my arm my leg was wet. Then Raine pointed out to me that my shirt had orange spots all over it so I figured out that my tubing was leaking but couldn't find an actual leak. I called the VNA and talked to the nurse. She came over and we found that the cap wasn't tight and so the chemo was leaking. She changed the cap and checked it for leaks - none. She switched the med to the other catheter and no leaks there either. So now my meds were delayed 2 hours, making the time I get the line out 2 hours later. Not to mention this threw my whole schedule off for the day. I swear it's always something!

Last Chemo

Today, August 18, 2009 was my last chemo. It went very smoothly with my arriving at 8:30. My counts were great and my PT/INR was great. My meds came in a very timely fashion and the VNA arrived just as my last bag of meds was done. She hooked me up and we discussed the possibility of her removing my PICC line Friday when she disconnects the portable IV. I was out of there by 11:45 - a huge difference from my first chemo when I was there from 9:00am to 5:00pm.

As I left, I wondered if I should say good-bye to everyone and I got a little teary-eyed - not that I'm going to miss chemo, but I do love the staff there. I decided I wouldn't say good-bye just yet. I have an appointment with Dr. Howard next week Friday and that will probably be my last appointment for awhile. I thought I would bring them muffins when I came or send them a popcorn sampler tin or something nice to thank them for all of their love and support.

My mom was very giddy the whole day about it being my last one, but I only had waves of giddiness (is that even a word?). For one, I have to have this IV bag on me for the next 3 days. And two, tomorrow is my appointment with the radiation oncologist. Everyone is telling me I should do what needs to be done but in my heart I really don't think that I am capable of having to go thru that.

I have decided to go camping this weekend with my family. It is our annual trip and because I haven't done anything, I am going no matter what.

I have also decided to go back to work September 2nd. I'm pretty excited about it and we really need the money. It has raised problems with child care the 2-days a week I'll be working but I've been praying and am hoping that we'll be able to figure it all out.

I'm sure as my journey with cancer comes to an end, I'll be wrapping up this blog soon. I want to give a big thank-you to all of my family and friends that participated in a "meals on wheels" for me - cooking for us and/or giving us money to order out for the days following my treatments. It was truly touching to see everyone come together for me and my family.

Hopefully tomorrow I'll get the news I want to hear from the Radiation Oncologist. Whatever the outcome, I'll have to deal with it.

Tales of Chemo Brain: The Stove

People with chemo brain should not be operating kitchen applicances like the stove. In two days, I've forgotten about it three times...

Our bake element in the oven had blown, so Bryan replaced it Friday. Saturday morning I turned on the oven to make sure it worked and thankfully I told him I was doing it because I didn't remember it until we were on our way home from Kenosha - around 3pm. I said "did we ever turn the oven off?" He said "It scares me that you just remembered that now."

Yesterday I was boiling brats on the stove to prep them for grilling and next thing I know, Bryan is standing behind me saying "honey, honey, honey" as the pot overboiled.

Today I was searing the boneless ribs I bought to throw them in the slow cooker...I figure I can't do much damage with a slow cooker. I forgot about them, thankfully not for long. I went into the kitchen for a drink and there they were in the pan, sizzling. I flipped them and stood there until they were ready.

As comedic as I make these stories out to be, they are very scary. It's not just forgetting like you forget where you put your sunglasses. The memory of the action is completely gone from my mind, as if it never happened.

I will be staying away from cooking without supervision until my mind comes back.

My Caregiver

Throughout my journey with cancer, I've had to have shots at home on and off, and now with the picc line I have to have both catheters flushed three times a week. My dear sweet husband has taken on the burden of all of this caregiving.

Starting with the Arixtra shots when I developed a clot around my mediport catheter, he would give me the shot in the belly daily. It was embarrassing for me, but he was like an old pro. These shots were easy - they were prefilled with medication.

Once my counts started dropping on a regular basis, he had to start giving me Neupogen shots. When we started these he gave them to me in the arm because he was still giving me the Arixtra in the belly. With Neupogen, he had to fill the syringes himself.

Neupogen has been a semi-regular thing for me, and when they put the picc line in they put me back on the arixtra for five days - two of which he had to do.

His latest task is flushing my picc catheters with Heparin (a blood thinner to prevent clotting in the line). He has taken on this task with ease.

He has done so much: taking off work, stepping up and taking care of the girls, the house, the laundry, the shopping, and has never complained or even seemed to be irritated or overwhelmed by it all. I know that his role has been hard but he had managed to do it all with grace. I'm sure once this is all over he will be breathing a little easier, but he has been a rock.

Back In Black

At my first oncology appointment, Dr. Howard talked to me about banking my eggs if I wanted to have any more children. She told me that it was possible that my body would go into menopause and that usually women 35 and up won't come out of it. I am 33, which puts me right on the border and my body could go either way.

I do want one more child, but my husband does not. Still, the thought of being told I can't have any more children was not something I wanted to hear - I didn't want the option taken away from me this way. I decided to leave it in God's hands. I know from getting pregnant with fraternal twins while on the pill that if it's in God's plan for me, nothing will stop it. I told my doctor that if God wants me to have more children, I will.

After a few treatments, my body went into menopause and my last period was March 31st. Well, because of the break in my chemotherapy due to my mystery infection, it has returned - full speed ahead.

Well despite that it had to come the same day as chemo (I wondered why I was 5lbs heavier than Friday), and despite all of the cramping and moodiness that goes along with it; I am very happy for it's return.

Today was my second to last treatment. My counts are low and so I have to start Neupogen shots again tomorrow and do them for four days. I know that this is excessive - my body responds pretty well to this drug and usually two days gets my counts right back up there but I guess at this point nobody wants to take any chances, including me.

I have my little bag with my portable pump again. So far it's not as annoying as last time. I think maybe because it represents only one more treatment, or maybe because I just got it back. I'm sure in a day or two I'll be hella annoyed with the thing.

I'm actually really tired...like exhausted and I'm sweating as usual. The first day of chemo always results in my being really hot and sweaty. It's quite uncomfortable and I find myself sucking down popsicles like they're the only food on earth and I'm starving.

I made an appointment with Dr. Ziaja about the radiation, but I have it in my head that I'm going to refuse no matter what she says. In my mind I'm done with this.

In other news, I signed up for the Leukemia and Lymphoma Society's Light The Night Walk. My friend Mikey, who also has Hodgkin's started up a team so Bryan and I joined. My mom wanted to walk too, so she joined, and then a few of her work friends, and then my sister and her husband, and then my dad started feeling left out and he joined, and then a few friends joined. I'm addicted to the team page - watching all the people join, both from my friends and family and from Mikey's. I've met my fundraising goal twice already, and raised it again to $300 (I'm at $248). Our team has also met it's goal twice, raising totals of $500, and now $1000. When I first got the email from Mikey I felt thankful that he asked me, and I felt happy to be a part of something that is trying to do something about our disease. But now, I'm so very excited at what we're doing and it feels really good to be a part of it. I haven't been this excited about anything in a long time and it made me realize that as done as I am with cancer right now, I'm not done with cancer at all. My physical fight is almost over, but there's a lot more fighting that I can do in other ways.

MUGA 'n Stuff

The results of my MUGA show my ejection fraction only went up from 52% to 55% - a far cry from the strong 69% it started at. The news was quite devastating to me. I should've asked her if it would continue to improve, but I was feeling so completely exhausted I didn't even think of it until later. I'm going to put it on my list for my next appointment and ask if I can have another MUGA before my 6-month appointment.

On the plus side of this appointment, I scheduled my last two chemo appointments. As my doctor wrote the dates down on her orders, I got teary...tears of joy that finally I can see an end to all of this...maybe.

I do have to go see the radiation doctor again for a "definite 'yes' or 'no'". The clinic called to schedule me, but my "plan" at that clinic was to make an appointment for a planning session and they didn't understand that this was a reconsult due to new information (the whole cancer around the lung thing). Again, devastation at the mere thought of having to go thru anything else to do with this fucking cancer. At this point I think I may just refuse the radiation no matter what they say.

My last chemo the side effects were so mild that I think I may just be able to go camping - at least for one night. I'm waiting until this next one before I get excited tho. It could just be that I was on a break so long it didn't affect my body like it normally does. But Tuesday, sweet Tuesday will be the second to last chemo and I'm so looking forward to it. I'm actually excited about it because I know there's only one more after this.

I've started planning for the next phase of my life - the phase I have been putting off for the last two years. I'm going to get in shape and get healthy. I'm not going to go crazy and I'm going to start off slow. I don't want to shock my body in any way, shape, or form. The last shock to my body was quitting smoking and look how well that worked out for me. But I have a short-term plan for starting and as I progress, I'll increase my activity, etc. I'm the type of person who can only do one thing at a time as far as life goes. I quit smoking and that's the only change I made that year because it required my focus and complete attention. So did cancer. And so will my next plan.

And 2010 will be the Year of Sarah. I will declare it so.

Sniffle Sniffle

This is what my mom wrote about me on her Light the Night donation page:

"My daughter Sarah was diagnosed with Hodgkins Lymphoma in February of this year when one phone call changed her life. Sarah has been fighting a great fight for the last 7 months and is nearing the end of her treatments with what looks to be a success story. She has sometimes had to take a step backwards to move forward in her treatment which was frightening.
She is not alone in this struggle. Her family, friends and co-workers have been most generous with their time, talents and generosity to her and her family. But I know it still wears heavy on her heart. She has a great husband and 3 wonderful little girls (all under 5) that unknowingly wear her out. Sarah is very brave and selfless most of the time and managed to maintained her great sense of humor 90% of the time. I am very proud her and of the way she is handling this challenge. Sometimes I feel like she is our strength - even though we all try to be hers."

Baths: A Prequel of Sorts

I hate this PICC Line. When I shower, I have to wrap my arm in Glad Press 'N Seal and then I can't bend my left arm. I've only been showering every other day and cleaning myself up with baby wipes on my off days. I'm so worried about infection and getting the area wet could cause infection.

This morning I got up at 6:20 because I had to go to the hospital for labs at 8:00 and another MUGA scan at 9:00. I didn't feel like showering, so I ran a bath. I prided myself on the idea because I could rest my PICC arm on the bathtub and not have to wrap it. The bath itself was fine, but it brought back a very bad memory...

The last bath I took was 2 or 3 days after my biopsy. I couldn't shower because I couldn't get the area wet (armpit) and that would be pretty impossible to keep dry, so I ran a bath. I was home alone with the twins and I didn't think it thru very well. The wound was under my right arm, so I wasn't able to function very well with only my left. I had to ask my babies, who had turned four less than a week before to help me. I had them prep my loofa so it was nice and soapy for me, and then I had them wash my hair. They took turns pouring a pitcher of water over my head, shampoo, rinse, condition, and rinse. They were very gentle and took much care in their work, but I was a mess. I was kneeling in the water, hunched over to make it easy for them, crying my eyes out because I had been reduced to having four-year-olds bathe me in a matter of days. I didn't want to be that person. I didn't want to be a cancer patient.

Now months later, as I sat in the tub this memory came flooding back into my head. I quickly finished up and got out. I don't like taking baths anyway.

I feel....

I can't decide how I feel. I'm super tired and having waves of nausea and little flecks of pain here and there. I can't tell if my symptoms aren't as severe because I had such a long break or because the Adriamycin went in over 72hours or because we dropped the Bleomycin. I just keep waiting for more extreme symptoms like before. On that note, I also don't want to ignore the bad feelings I do have. I want this to be over so bad that sometimes I think I do too much just so I can feel normal. "Normal", like I'll ever feel that again.

Every little symptom and every little pain this time around I find myself worried about infection in my new picc line, take my temperature, and if it's normal I take a nausea pill or a pain pill or nothing depending on the symptom at the time.

Yesterday I remembered Dr. Howard telling me to meet with Dr. Ziaja (Radiation Oncologist) again to make sure she doesn't want to do radiation. I don't know why I have to meet with her - why can't Dr. Howard just call her? Why can't I just call her? At this point I can honestly say that there is no way that I could handle going thru radiation. I've been thru so much; too much already. To even think that I would have to go thru that too makes me...I can't even explain how it makes me feel. Sick to my stomach. Like crying. Frustrated. Angry. Irate. Fuck, fuck, fuck I can't even think of it. So Monday I will call and leave a message for her and see if I can just talk to her on the phone about it, and hope for the best. I know they can't radiate my lung, but the original plan was to radiate everywhere (prior to knowledge of said lung) and that would be 5 days a week for 4-6 weeks. But when I told Dr. Howard I wasn't comfortable with it, she did say that I could have more chemo instead and the cure rate is just a tad lower - like 5% lower. And I ended up having to have the extra 4 (extra 8 since 2 treatments is one cycle), so by count, that's it.

It's so hard to think about because I want to be "cured". I want this to be gone without recurrence so I want to listen to and trust that the doctor's know the best way to get me there. But I'm here to say that my body and my mind just cannot handle much more. I just want my life back now.

Disclaimer: in my saying I've been thru too much I do know and understand that many people deal with worse on a daily basis and I'd like to give them all of my praise. "Too much" is my too much, and no one else's.

Me & My Pump (and other news)

Tomorrow I will be disconnected from my pump and I cannot wait! This thing is such a pain in the ass. It's too heavy to wear around my waist, and when I wear it as a purse it keeps sliding off of my shoulder. I can't shower with it because the tubing isn't long enough to put the sack on the floor and maneuver around so I've been cleaning myself with baby wipes. I smell young and fresh, but feel gross.

My sleep is also deprived as I'm stuck on my back or only slightly to my left side. I'm a stomach sleeper and sometimes will settle for my right side. I'm hoping once the insertion site of the line heals and isn't as sore that sleeping will no longer be a problem, but again the tubing isn't very long and I have to be completely conscious of the sack I carry with me. Nevertheless, I only have to do this two more times.

In other news, because of the line Dr. Howard wants me to start back up on the blood thinners - just to be on the safe side. She wanted me to go back on the Coumadin (pills) and also take a few days of the Arixtra shots. I had two shots left over and took one Tuesday. When I called yesterday to clarify just how many days she wanted me to take the shots, they told me five days and that they would write me a prescription for three more. I asked if they had any samples, explaining that those three shots would cost me a $75 co-pay and so the nurse arranged for me to come into the office yesterday, today, and tomorrow and they'll give me the shots and then I can use my last one Saturday. This way the insurance will cover the full amount of the shots and save me $75. I am thrilled about that!

I also finally got approved for FoodShare. I was very leery about applying. I didn't want to be on "welfare" or be categorized as such. But then I thought about all the people on it that are perfectly capable of working and how we can never seem to get any help because we always fall into that middle-class working man's world of making too much, even tho it's never enough category. And so I applied in May but never got the letter from them requesting more information. When I called last week, she told me what she needed and I had Bryan fax her everything Friday. I got our card today and we've been approved for $223/month. Now I'm just waiting for my booklet so I know what is and isn't "approved". I actually felt a little wave of relief when I found out we were approved because every little bit helps.

As for how I'm feeling, I should be feeling worse for it being two days after chemo, but I am having waves of feeling really bad and then pretty good. I'm wondering how the chemo will hit me now with my new regimen. I guess I'll just have to wait and see.

My PICC Line

I woke up at the early time of 6:15, got my clothes together, mixed my morning Miralax & water, and took a shower, and took my vitamins while drinking my Mirawater. At 6:55 my mom picked me up and took me to the hospital - my grandma couldn't watch the girls until around 9:30 so Bryan had to stay home with them for awhile.

At the hospital, the RT (respiratory therapist) took me to the 2nd floor in the G.I. Lab room 6 and started getting everything ready. She explained the pros and cons of the PICC line and had me sign a consent form. I was pretty nervous about it since all she was going to give me was Lidocaine to numb me and I would be fully alert during the procedure.

She used an ultrasound to find a good vessel to enter and found one right away; however once she injected the numbing agent something happened and the vessel wasn't cooperating anymore. She insert the very long catheter, but couldn't get it to draw so she pulled it out. She spent some time trying to find another, and finally did. This time she gave me only a little lidocaine at a time and kept the ultrasound on the spot she wanted to enter to keep her eye on it. After a few injections, I finally was numb enough and she inserted the catheter, and did her thing with the dressing. As we waited for the portable x-ray to come, my heart was fluttering a lot and I pictured the catheter touching my heart. I was trying not to freak out, and thought that maybe the fluttering was a bi-product of my nerves.

They took a chest x-ray and told me that a radiologist would look at it right away to see if the line was in place and send up a fax. I told the RT about my heart and she thought maybe the catheter was in too deep - this made me nervous. Once the radiologist's report came up, she told me that the line was right at the right atrium and that she was going to pull the line out a little bit. She undressed it and pulled it out 6cm and then redressed it. I felt instant relief in my chest. She cleaned up and walked me down to the clinic for my chemo.

At the clinic my nurse weighed me and took some blood. All of my labs came back great and so she called the pharmacy and gave them the o.k. for my chemo. Originally a nurse from the VNA (Visiting Nurse Association) was going to come to my house to hook up my Adriamycin, but when my nurse called to tell them it was a "go" for my chemo, they arranged to come to the clinic.

My in-house chemo only took an hour and 5 minutes since Dr. Howard dropped the Bleomycin. The VNA nurse got to the clinic early, which was nice. She explained how the pump worked and went over paperwork with me. She taught Bryan (who arrived as I started chemo) how to flush the ports; which he has to do every Monday, Wednesday, and Friday. She gave me a bag filled with all kinds of supplies.

My pump is silent, and that was a huge relief since I'm a light sleeper. It sits in a bag that I can either wear around my waist like a cool hipsack (not) or like a purse. The infusion of the medication takes 72 hours so I have to be hooked up until Friday afternoon at 12:15.

As I sat in the clinic, the site of my PICC line started to bleed. My nurse told me that it happens sometimes and put an ice pack on it. She told me that if it started bleeding again to call the VNA. I keep checking it because I'm completely paranoid and sometimes it seems there is more blood absorbed in the pad than before and sometimes not. I have a mental marker that if the blood reaches a certain point on the pad I will call the VNA about it.

So now I'm just trying to take it easy even tho I'm going out of my mind with boredom. It's like telling someone not to look down - they have to look. Now that I'm semi-incapacitated I want to do everything. I'm sure in a few days I'll be back to my old chemo self, laying in bed, in pain, watching Bones season 1 and reading my book.

I keep telling myself "one down, two to go" but I'm not happy. I hate this line. I hate that it's on the inside of my arm. I hate that I either have to have a "sleeve" over the tubing to hold it to my arm, or let the two tubes dangle like tentacles. I hate that I have to carry a pump around for 3 days. I hate that my kids can't pile up on my lap to read a book or watch tv. And mostly I just hate that this is happening and I can't find any good in it right now. I can see how other people may find some good in it, but I can't find any - not for me, not for my kids. I'm sure God will reveal his plan to me in good time, but right now I keep finding myself praying that there is a plan for me - a long-term plan.

This will stay in for the duration of my treatment

Fear

I wish I could erase the last 7 months from my memory. I've endured many road bumps on my journey and they've left me a paranoid person, afraid for my life. With every little pain I find myself begging God to let me live. I don't recognize myself anymore. I can't find my sense of humor, my sarcasm, my wit. It's like I've broken down on the side of the road and am waiting for a tow.

My latest fear is this PICC line. I thought that Interventional Radiology put them in, but a respiratory therapist called me to schedule it. They don't put you to sleep, just "numb you up real good". Take a look at this - how can they possibly numb you up enough not to feel any of this:

And with having three kids, I'm not looking forward to having this sticking out of my arm:

Now I just googled this picture and perhaps my picc line won't be such a monstrosity, but I'm pretty sure it will be.

I am a stressed out mess. I withdrew Skye from her summer school art class because she is only five years old, at a strange school, and the teachers just let them go after class onto the playground with at least 150 other kids. I wasn't able to find her easily and the last day I took her I watched her walk up the stairs to the playground alone, looking around because she didn't know which way to go. With everything else, I didn't need that stress in my life.

I want to enjoy part of this summer. It's my favorite time of year - I spend months pining after it and this year I have been robbed of anything fun. I can't go to any festivals or any place with crowds. When I ignored this and went to 7 mile fair I ended up in the hospital with some mystery infection. I'm afraid to go anywhere, to do anything, to feel anything.

I wonder if I will ever be back to my old self, the comedian, laughing all the time. Or will I always be a shadow of my former self, always paranoid, always fearful.

The Plan

So my ejection fraction in my heart is 52%. Anything above 50% is normal, BUT my on my original MUGA scan mine was 69%. She told me that it could've been because of the infection, but that it was too big of a drop to ignore. My options were:

1. Stick with the current ABVD cocktail, but get the "A" infused over a 72-hour period rather than all at once at the clinic.

2. Start a whole new cocktail called MOPP for the last three chemos. Included in this cocktail is the same thing as mustard gas used in WWII and it would make me sterile.

I opted to stick with the ABVD because I did not want to introduce all new drugs into my body this late in the game.

I will have to have a PICC line put into my left arm and go in for chemo as normal. Then I will go home with the med and they will go into my body over a 72-hour period. This pretty much eliminates any toxicity to the heart. After my next chemo, we will do another MUGA. She is also going to drop the "B" in the cocktail because this affects the lungs and she doesn't want to take any chances. This is the only drug she can drop without any thought, whereas the "A" is the key medication to curing Lymphoma.

I will have the PICC line put in Tuesday and have chemo right after. I'm not looking forward to the change in my schedule because now I will be needing more help during the week while I'm having my "sick days". Before this, Bryan would take off Friday and Monday and someone would take off Tuesday and that was it.

I'm also devastated that my last chemo will now be August 18th and our family camping trip is August 21-23. The trip is for my sister's birthday and it was going to be my family, my sister and her husband, my parents, and my Brit and her fiance'. The kids were really looking forward to going, as was I.

I'm sick and tired of the bullshit cancer ruining every little bit of joy I have in my life. It has stripped me of my entire summer, my confidence, my sanity at times. I hate it. I hate it more than anything I've ever hated and unlike anything I've ever hated, I can't just ignore it. It keeps sticking itself in my face, talking shit. This was supposed to be over already, but then the lung discovery. It was supposed to be over July 31st, but then the infection. Now the end has been pushed almost a month! Now I have to have another invasive line stuck into my body. I'm going to have to walk around with an IV for 3 days at home. I feel sick.

Waiting By The Phone

Monday I was supposed to call Dr. Howard and let her know how my fevers were doing - they were down finally. In fact, I've been feeling pretty good other than a little chest discomfort when I take deep breaths, and a slight cough. I called the office and talked to the secretary. She talked to one of the nurses and then told me someone would call me back. Well, they never called me back and I passed out; waking up too late to call them again.

I called them back on Tuesday and both the secretary and the nurse were shocked that Dr. Howard didn't call me back. Apparently, she told the nurses that she needed to talk to me, and they pulled my chart and gave it to her. The nurse did tell me that there was a change on my MUGA scan (heart scan) and that they may drop one of the meds in my chemo, but Dr. would have to talk to me about it. Of coarse she was out of the office, and I would have to wait until Wednesday to talk to her. At this point I'm really irritated because I have no idea what is next, when I can have chemo again, what my MUGA results mean, etc.

And today, I've waited by the phone all morning (other than taking my daughter to her class), and when they finally called, I calmed the twins down and answered. Dr. Howard wants me to come into the office today - she thinks it would be easier to answer questions in person rather than over the phone...

Of coarse I'm about to have a nervous fucking breakdown. The last time I was called into a doctor's office in this fashion was to be told there's a mass in my neck that is probably cancer. Is my heart function that bad? My lung function? My labs? Are the spots on my chest that they thought could be small pneumonia really the lymphoma coming back? Or does she really prefer talking in person to talking on the phone? I'm trying to stay calm for my kids. I still have to pick up Skye from class. I don't see the doctor until 3:00. I have that lump in my throat and tears in my eyes and I'm not sure how to go about keeping myself from a meltdown.

I Got a Fever...

I spent all of yesterday taking my temperature and watching it go up and down between 97.6 and 99.8. This is just a low fever, but still a fever and still preventing me from continuing and finishing my chemo. I also feel really bad when my temp it up - dizzy, and just rotten. Today I haven't had any fever (yet) and I feel almost normal. I'm finding myself exhausted and I feel like sleeping is the best thing I can do for myself right now. I imagine my body healing itself; resetting itself while I sleep. I don't know if this is the case, but it's how I imagine it.

I feel like a prisoner in my own home. I don't want to stay here, but I don't want to go anywhere and risk getting sick again. I couldn't bear another hospital stay.

I still have no answers and it's starting to bother me. I understand it could've been a virus. I don't understand the reason for my going to see the pulmonologist again. I really don't want to see him. I don't trust him anymore. I just couldn't think of anyone else off the top of my head. On one hand, it would be good to see him since he knows my history and he typically is a good doctor. On the other hand, I'm going to have a very hard time trusting what he says. I'd like to grill him about his mistake, but I also have to work with the guy and if you know me at all I'm either too nice or very shitty - I have no in-between. My mom is coming with me, so that makes me feel better about it.

My being winded with every little movement has subsided for the most part, although I still feel a little tightness in my chest. I'm hoping this all clears up and I can have chemo on Friday - on Friday I'll be two weeks behind.

Troubleshooting

Every night I get a fever ranging from 99.1 to 100.6. On Wednesday, I had a pulmonary function test and saw Dr. Howard. Because I was still having fevers and night sweats, she wanted my mediport out. She rather be on the safe side and remove it, even tho the cultures had come back negative. There were also some spots on my CT indicating a small pneumonia. She told me that pneumonia can show up on an x-ray even after a person it better. I asked her if it could be my heart causing the shortness of breath and she told me that we can't answer that without checking it out. So the plan was to get rid of my mediport, like yesterday and get another MUGA scan to make sure my heart function is o.k. She also wanted me to see my pulmonologist about the decreased lung function and CT.

Her nurse set up the Mediport removal for Thursday at 2:00. The only problem was that I was on blood thinners and my INR was 2.7. In order to have this procedure done, it needed to be 1.5. She gave me 10mg of Vitamin K which helps reverse it, and told me not to take my blood thinners and that I may have to have fresh frozen plasma transfused if the vitamin K didn't do the trick.

So Thursday Bryan and I arrived at the hospital around 7:50am. We checked in at the front for my MUGA scan and went straight to the clinic. They inserted and IV into my left arm and drew blood for another INR test. After that we went down to Nuclear Medicine for the MUGA. The tech drew some blood and I waited while he put a tracer in the blood he drew. While I waited, I ran into the radiology nurse, who is an absolute angel. She was with me when I had my mediport put in, and helped me thru that rough patch in the days following. She told me my INR was 1.9 but that the doctor said it was acceptable and we were a go for the procedure. About a 1/2 hour later, the nuclear med tech came and got me, re-injected that blood into my arm, and I laid down on the table for the "pictures".

Afterwards I went back to the clinic to see if they needed me for anything else and even tho the interventional radiologist said 1.9 was acceptable, Dr. Howard wanted me at 1.5 so they transfused two units of fresh frozen plasma...it was cold. Afterwards they drew more blood and I waited. I was super tired, so I dozed off and around 11:30 the nurse came and told me that my INR was now 1.5. Bryan and I went and sat outside for a 1/2 hour until it was time to check in to day surgery.

We checked in at day surgery and got into my room. I had to strip down to my socks and put on an ugly gown. I've grown to truly hate these gowns. Why must they be so frickin' ugly??? Anyway, my nurse was in and out of my room asking me 20 questions...the same 20 questions that I feel like I answer every day. I'd like to get a t-shirt made for my trips to the hospital. Bryan and I watched TV until finally the radiology nurse came and got me.

Once we were down in the freezing cold angio room, the interventional radiologist came to talk to me about the procedure. They weren't putting me out - only giving me something to relax me. I put on my brave face and we got in there. They hooked me up, putting on EKG patches, a blood pressure cuff, oxygen tubes in my nose, the finger thing that monitors your pulse. They put arm rests on the narrow table for my arms. Then they covered my face with paper sheets and gave me the meds to relax me. I didn't feel much different, but it must've done something since I really didn't seem to care much about what was going on. The doc stuck me several times around my port with something to numb me up. He did a good job. I didn't feel a thing except some tugging as he stitched me back up.

Once it was over, I was wheeled back to my room and had to be there for an hour before being discharged. My instructions were to keep the dressing on for a couple of days, watch for fever (nice since I already get them), and watch for infection.

We finally left the hospital at 4:30pm.

That night I realized that I had no idea what the next step was. I called the doctor's office this morning and talked with a nurse. She told me that they already had my chart pulled for the doctor with a note on it saying "what's next?".

Later, Dr. Howard called me back and talked to me about my fevers. She told me I could stay off the blood thinners now, and call her on Monday to let her know how my fevers were over the weekend. I see my pulmonologist on Thursday and she already called him to talk to him about what's going on. I still don't know why I have to see him, when they just talked on the phone.

So I'm hoping to get better really soon. My shortness of breath is a tiny bit better every day, but I still get a fever every night. I want whatever this is to be gone so I can continue with my chemo and get this shit over with! I want to go back to work and make some money since we're pretty much out of it. I want to be social. I keep thinking about how I'm going to celebrate once all of this is over. My birthday is in December and I want to have a big party to celebrate making it thru the year. But for now, I'm still afraid to go to sleep some nights and I'm afraid of how my life will be when this is finally over. Will I be afraid with every little ache, pain, or ill feeling? Will I become completely paranoid? Will I always have to live in fear?

Evacuation

Monday morning I had an appointment for chemo at 8:30. Because of my recent infection, they were going to do a bunch of labs, check my vitals, and go over my fevers with me before making a decision on the chemo. My grams was going to come over to watch the girls and my sister was going to take me to my appointment.

When I woke up, I turned on the news and saw that Patrick Cudahy was on fire and had been since the night before. They were asking all residents within a mile radius to close all their windows and turn off their air conditioners. I followed direction - I don't need anything else to be wrong.

Skye was still sleeping and the twins were eating their cereal when the news announced an evacuation from Layton Avenue down. I'm just a few blocks from Layton I thought so I called my husband to see what I should do. My first instinct was to have my sister watch the girls at my mom's house, but he suggested I take the girls to my grandma's instead. I called up my grandma and told her we'd come over there.

Shortly after I got a call from the school district saying that there was an evacuation for anyone within a one mile radius. I knew this was us, so I quick rushed to get everyone ready and over to my grandma's house. I didn't even think about my cats because it was early, I was feeling like shit, and I was so rushed. I figured they'd get the fire out in no time.

At grams we couldn't see the smoke, and I waited for my sister to pick me up. By the time she came, you could see the smoke and even smell a hint of it. I told my grandma that if she was going to get evacuated to call my cell phone and I would send my sister to pick them all up. I didn't realize her house also fell into the one mile radius...just barely.

At the hospital/clinic, I gave the nurse my fever log and she immediately was against my having chemo. She drew a ton of blood for all the labs the on-call doctor had ordered when I was discharged from the hospital and sent them down to lab. She checked my vital signs and my fever was gone but my heart rate was 114 - still a bit high. I told her about my feeling winded with any little bit of activity and about the pain in my chest that just started that morning. Once the labs came back, she called the doctor to tell him everything.

During the down time, my sister and I watched in awe of the fire. It would get better, then worse, then better again. They were working so hard to put it out and there didn't seem to be any end in sight. The evacuation turned into a Mandatory Evacuation because they were afraid of an ammonia explosion. Now I started worrying about my cats.

They asked if I had any pain or swelling in my legs and I told them no, but that I had pain in my right arm the day before. The doctor canceled chemo and had me make an appointment to see my doctor once she returned from vacation on Wednesday (today). He also ordered a CT scan of my chest with PE (Pulmonary Embolism) Protocol. They wanted to check to make sure I didn't have a blood clot in my lung. This freaked me out a lot.

In the meantime, one of my Pastors called the clinic and told me that my grandma and my kids were all at his house. I was a little irritated that my grandma didn't call me like I instructed her to. I sent my sister to go get them all and move them to my mom's house. Once she got there, my grandma refused to go and refused to let her take the girls claiming they were fine and having fun. My sister was pretty upset by this, but as she was leaving my Uncle was coming. My sister told him what was going on and he said he'd "work on them" and to call him later.

My sister got back to the hospital as I was on my way down to Radiology, which was nice timing. I had the CT and we walked back to the clinic. As we waited around, I got more and more mad about my grandma - they're my kids and if I sent my sister there to get them, than those are my wishes and she needs to respect that. I was getting hotter and hotter about it but there was nothing I could do sitting there waiting. Finally my sister called my Uncle and he had everyone at his house. I was relieved, but still felt bad since he's not accustomed to watching kids and had both my grandma and her sister with him too.

We waited forever and finally I asked the nurse what was going on. My nurse had gone to lunch and left a nurse I'd never seen before in charge. She told me they have the report back and she wants to fax it to the doctor but he wasn't calling her back. This worried me because they were only supposed to page him with abnormal results. Another nurse finally told her to page him again and so she did.

She told him she wanted to fax the report to him and he must've asked why because she said "Well, there's no PE but it says some other things on there". She faxed the report and he called her back. I didn't hear this conversation, but she came back and told me that my lymphoma has shown significant improvement (duh) and that he wants a Pulmonary Function Test. I asked her if the report said anything else and she told me she couldn't read it because it was hand-written and not the full typed report. I was pretty pissed off about all of this because I know that something's on that report and the on-call should've asked to talk to me on the phone, but they're just going to wait until today? It could be absolutely nothing - like the lesions on my lungs that I already know about, but they wouldn't know about. Having an on-call and a new nurse were definitely not in my favor.

We left the clinic, went to Walgreens, picked up the kids, grabbed something to eat, and went back to my mom's house. My sister stayed with me until my mom got home and then I took her to get her car. My husband picked up the cats after work and came over to my mom's. We were there until around 7pm when they gave the all clear for residents to come home.

It was a terrible, horrible, no good, very bad day.

My 4th and Today

The 4th of July started off with a fever that went away with Tylenol. I got up and took my time doing all the things I needed to do. During the night I noticed that very little activity caused me to be winded and it was no different during the day. I was devastated that I had to miss the parade, but got the girls ready in American Flag dresses, red and blue hair pieces, and blue hair spray. They looked fabulous. Everyone left and I was alone.

I packed a bag for the day, made taco dip, did a load of laundry, took a much needed and well-deserved shower, and got myself ready. I took a ton of breaks because I kept getting that winded feeling. I'm pretty sure it's my heart rate increasing too much as it did when I was in the hospital and I also think it's due to one of the medications.

Once the parade was over, my sister and her husband picked me up and we headed over to my aunt and uncle's. I heard that my girls were the hit of the parade and that the Cudahy Now was there taking their picture and getting their names. She told my husband they'd be in the paper on Thursday but online before. Then Bryan told me that 3/4 of the way thru the parade Raine started crying because she missed me. That was heartbreaking.

I spent most of the day sitting around talking with my family. Luckily the kids were entertained the majority of the time by the other kids and games. I couldn't believe they ran around constantly from around 2pm to 11pm, only stopping for a sip here and there and for dinner. If only they could bottle up that energy and sell it.

We went to see the fireworks and then had our own display in the back yard. We said our good-byes and left for home. I wished I had more time with them, that they lived closer or we lived closer or something.

I got only a few hours of sleep before my neighbors decided it was party time and I had to move to the couch in order to get any kind of sleep.

Today I'm still feeling pretty bad. My fever is gone, but my right arm hurts and I am still getting winded with any little movement like going to the bathroom, or getting a drink of water. My hands and feet also feel tight as if I'm holding water and I'm not going to the bathroom much. Tomorrow I will go in and have a bunch of labs drawn and my vital signs taken to see if they're going to give me chemo or if I have to wait. I'm hoping they wait because I don't feel ready for a treatment yet, but on the other hand I just want to get these over with.

I have never been afraid to go to sleep before. Since I got home from the hospital, I've been terrified that something is going to happen in my sleep. With every little pain or episode, I fear the worst. This is no way to live. I feel cooped up in my house, yet I'm afraid to go anywhere. I'm so afraid of something happening, but I don't want to go back to the hospital. I missed my girls so much while I was gone, but I need them to leave me alone right now. I just want to lay down and relax until the doctor tomorrow. I want to wake up feeling 100% instead of 65%. I keep wondering why I keep hitting all of these little road bumps. I keep wondering how I am going to make it thru three more treatments.

My Infection

It started Tuesday - or maybe even Monday. I felt pretty rotty Monday but Tuesday I felt like complete shit. I was hot and cold, dizzy, and on and off headache and so, so tired. I convinced the twins to take a nap with me but that nap wasn't enough. When Bryan came home I took a nap on the couch and when I woke up my head was pounding I was shivering. By shivering I mean my teeth were chattering uncontrollably kind of shivering. I took three Tylenol for my headache and sat down.



After awhile Bryan suggested I take my temperature and after the kids were all in bed, I did. It was 102.4. I took it repeatedly, in both ears over and over and the result was the same. Then I tried my forehead thermometer and that kept coming back at 97. I took a cool shower in hopes that my temp was just elevated because I had just woken up. After my shower I took my ear temp again and it was 103.8. I waited a little and tried again and it was back to 102.4. I searched the house for the mouth thermometer and when I finally found it, it said 102.2. I knew I had to call the doctor but I didn't want to. I knew what she would tell me.



She asked how high my fever was and told me it was too high. I told her about my other symptoms and she told me to go to the ER and she would call ahead and let them know I was on my way. Bryan got dressed and I called my sister to come watch the girls until my parents could come. Then I called my mom and asked her to come. I was in tears, I didn't want to go. I knew it would be a long trip and that I might not be released that day.



I got to the ER and they took my home medication information and put me in a room. The ER doctor came to see me and told me they were going to pump me with fluids and antibiotics, take some blood and urine and possibly admit me. Things were rolling so fast, they did an EKG, took a ton of blood, I peed in their cup, they hooked me up to the fluids and antibiotics. They did a chest x-ray, and then another. They noted that my heart rate was higher than it should be. And then the waiting began.



I don't know how long we waited, but there was a new doctor on now. He came in and told me that my labs are showing my body has an infection but they don't know where it's coming from because I don't have any other symptoms (rashes, pains, etc.). He said they were going to give me more antibiotics and more fluids and admit me. And there it was.



After much more waiting (we got there at 9:30pm and they moved me to a room at 3:30am) I was finally moved to a room. It was a private room. I was exhausted, but I had to go thru another hour of questions and being hooked up to EKG monitoring and more fluids and antibiotics. During this whole time I kept getting very hot and sweaty, and then teeth-chattering cold.



I was put on "Neutropenic Precautions" which meant no fresh fruits for veggies, no flowers, and any visitors with cold symptoms had to wear a mask.



Bryan left around 4:30 to relieve my parents and I tried to go to sleep for awhile. Someone across the hall was throwing up all night long so sleep wasn't something I would be getting any of.



The next day (Wednesday) I was so hot that I got up and leaned myself over the air conditioning vent. The nurse brought me some ice packs which I immediately put on my neck and head. All day I went from hot to cold and I'm downplaying it by saying it like that. Bryan came and sat with me and my sister and mom took off work. Sacha watched the girls in the morning and my mom visited me and then my mom went to my house and they brought the girls to visit me. I could tell the girls were upset by it all and that made me more upset. We hung up the butterflies they made me.



My doctor came and told me that they only thing they haven't tested me for was swine flu. I think she was joking. She told me my PT/INR was low and so I would have to have shots of Arixtra in my belly until my level came up. She told me my counts were low so I would have to have Neupogen shots in my belly to boost those. She told me that she consulted an Infectious Disease doctor to try to figure out what the infection is. And she told me I was stuck there.



Sometime during the day I lost my appetite. I tried to eat lunch and dinner, but just wasn't feeling it. My friend Kristi came to visit with gifts and a card from my unit. Sometime during her stay I got those teeth-chattering chills. After she left she texted me to ask the nurse to take my temperature...it was 103.1. This confirmed what I already thought - the chills meant my fever was high and the sweats meant it was low. Bryan waited pretty long, but I wanted him to spend some time with the girls before they went to bed so he left around 7pm. They made me put cold wash clothes on my chest and head, which was horrible considering how cold I was.



Shortly after, the Infectious Disease doctor came and checked me out. He looked everywhere and felt everywhere and asked about everywhere I had been. He had already been thru my chart and test results. He told me that it could just be a virus that my body couldn't fight due to low blood counts. He told me it could be that my port was infected and that the blood cultures would show that, but so far the cultures were negative. Then he said there was a very slight chance it was the swine flu and that he was going to test for that, and that test takes two days to come back.



I was devastated - two days brings me to Friday and my family is coming Friday. I thought I'd be stuck there all weekend.



Being tested for the swine flu meant I had to be put into isolation. Anyone entering my room had to wear goggles, a mask that resembled a duck bill, a gown, and rubber gloves, and my room door had to stay closed at all times. To do this test, the nurse took a wire swab and stuck it up my nose and it wrapped down into my throat. It was torture and it sent me into a crying fit. I cried for a long time - I was lonely, I missed my kids, and I wanted to go home.



That night they alternated Tylenol and ibuprofen and my fever finally broke, going down to 98.2 but I was sweating profusely. My sheets were soaked and around 4:30am I asked my nurse if I could have new sheets. She changed my sheets and was excited that my fever broke and my heart rate went down. I liked her a lot, she was the only nurse I liked and of course she worked the night shift.

By morning the fever had returned along with the hot and cold flashes. It was another long day of crappy nurses, crappier nursing assistants, and emptying my own urine. That's right, I had to pee in a container that sat in the toilet - easy to do. The nursing assistants were supposed to empty this and record how much "output" I had. I ended up writing it all down and emptying it myself most of the day and night. On this day I was getting really frustrated because I couldn't see the girls because of the isolation and because someone was supposed to come to my room every hour and it was more like every 2 1/2 hours. The doctors rounded late and I was homesick.

The Infectious Disease doctor came by and told me the cultures were still negative but the swine flu test wasn't back yet. Then he mentioned being able to go home if we can get the fever gone and the test was negative. This gave me some hope of being out of there Friday. Then the doctor covering for my doctor came by and checked me out. We asked him the chances of my going home tomorrow (Friday) and he said pretty low, but possibly Saturday. I was happy to hear it, but not feeling like it was possible because my fever just wouldn't quit.

My parents were keeping the kids overnight and Bryan left a little after 8pm to go kiss them before he went home.

I cried even harder that night. I was really lonely, I couldn't sleep, I was too hot and too cold and had been sweating constantly for over 24 hours. I really missed my kids and I really just wanted to be better. I repeated begged God to take away this infection and make me well.

In the middle of the night I woke up, the fever was back, and I felt a little tightness in my chest. My pulse ox was 98, which is good so I think it might have been anxiety. The nurse gave me some Tylenol. She was concerned about my heart rate - every time I got up to go to the bathroom it would go up into the 150's. Both doctors had told me the high heart rate was due to the fever.

In the morning my fever was gone and my sheets were drenched with sweat again. I asked the nursing assistant if I could have new sheets and she gladly changed my bed for me. I felt pretty good - just a slight headache but it was the first day I felt comfortable with my body temperature. My appetite was even back.

Sometime after 11am, the nursing assistant informed me that I was no longer in isolation - so no swine flu. And then around 3:00, like an angel the doctor covering for my doc floated in and asked me if I wanted to go home. By 4:00 I was walking out the door, so happy and excited to see my kids.

He told me if my fever comes back and I feel o.k., to track it - how high, the time, etc. He said to come to my chemo appointment Monday and he wrote orders for them to do a bunch of tests, check my vitals, and then call him to make sure I can have it.

I checked my temp around 5:20pm and it was 100. I took some Tylenol and it went away. I wrote it down. I'm hoping to wake up feeling like a new woman tomorrow, although I'm worried I may have to go back. All the antibiotics and flu treatments have my tummy messed up and I'm still feeling a little hot and a little crappy. I was feeling so good this morning and even in the early afternoon.

I'm going to skip the 4th of July parade to avoid the large crowd of germs, but I am going to go to my aunts to spend time with my family. I pray I'll be feeling good enough.

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.