Who's NED?

After 4+ weeks, I finally, FINALLY got my NED!  For those of you non-cancer-lingo-knowing people, that's the "All Clear" I've been waiting for.

I've spent these weeks in my little denial bubble (as a good friend told me, "sometimes you just have to go there") and I was pretty happy there.  I can say very honestly, that I really did not want to know the results, much to the chagrin of my family.

I know I drove my husband crazy with my going about like the cloud of impending doom was not hovering above my head, smiling and singing and baking.  As long as I did not have bad news, I was absolutely happy.

Yesterday though, I thought "enough is enough".  I think my husband lost at least 5lbs this week.  I called the clinic and talked to Dee (name changed for privacy purposes).  I love this woman.  I honestly think she makes the cancer experience better for the patients in that clinic.  She told me doctor wouldn't be in until Thursday to which I replied, "are you serious?"  Because it was late in the day, she told me she'd have a nurse call doctor in the morning (today) and let her know I'm waiting.

So shortly after 9:30 my cell phone started playing the theme from Law and Order: SVU and I recognized the number immediately.  It was Jay (again with the clever name changes), my 2nd favorite nurse in the clinic.  My whole body tingled and froze as she started talking to me.  I felt paralyzed...my happy denial bubble was gone and I felt naked sitting there at my desk.  I immediately regretted answering my phone while I was at work.

She began telling me they saw NED.  Oh how I love that mother trucker!  No Evidence of Disease!  None!  Clear!  I yelled "all clear!" in the office and got all kinds of yays and then I started crying.  Apparently that bubble was keeping all of the emotion away from me and it all came swirling around me after I got the news.

This experience has brought out the best and the worst in me and I cannot wait to go down to the Light the Night walk tomorrow night, put on my "Survivor" t-shirt, and walk with my favorite people, celebrating this victory.

Now, who wants to have a drink with me?!

How Can I Not Want To Know?

With this recent scare, I have put off my scan, and have made it very clear that I did not want to know anything until after my daughter's birthday.  My family, and possibly some friends cannot fathom my not wanting to know.

My husband was in such a state Friday because of my scan that he came home from work.  I was smiling and relaxed, making birthday cake in my clueless bubble.  He was sick to his stomach.

So how could I not want to know anything?  It's simple.  I've been there, done that.  I don't want to go through it again.  I don't know if I have the strength to do it and so I'd rather live in the bliss of an oblivion.  When I think about recurrence, I think "I don't know if I'd do anything about it anyway".  And therefore, it is easy for me to relax, and enjoy my daughter's birthday with my family.  To live in the moment.

In the back of my mind I know it could be the last family gathering, but I've lived with that knowledge for just over four years now.  I know my time is limited.  I no longer have that sense of being indestructible.  I'm fully aware that at any given moment, I could be gone and to be perfectly honest, a huge part of me just doesn't want to know.

Now, I don't have a death wish.  I don't want to leave my daughters or my life and I'm sure if it came down to it I would fight like hell.  I just have had to accept and live with the knowledge of my mortality for some time.  Every family gathering, every get-together with a friend; I try to savor them and hold them in my heart.

And so when it comes to this, I have to have faith that whatever the outcome, it is what is meant to be.  

Sweating

I've been sweating all day long.  A symptom of my PMS.  Sitting here sweating, got me thinking about the exercise class I'm supposed to start on Friday with a friend of mine.  I was pretty excited about it.  I signed up for a Mayor's Fitness Challenge with some other friends so this class would help keep me in line and let me spend time my friend.

However given everything that's going on, I'm second guessing myself.  Should I still sign up?  Should I spend the money?  If I've relapsed I'll be told to stay away from crowds.  I'll have to limit my activity and my availability would suddenly be very compromised (along with my immune system, no doubt).  But if I'm fine, and I didn't do I have to wait until November or December for the next class.  And what if I get no answers at all?  What if there's a big fat question mark on my next scan?  Should I be living my life scan to scan?  

That's not what I wanted for myself and yet I have to admit that anytime I come close to a scan I'm hesitant about making any plans until after I meet with the doctor.  I'd like to say this time is no different, but I fear that it is.  I guess you could say I'm sweating bullets this time around.  All of this sweating has to be good for a pound or two right?    

Happy CancerversaWHAT?!

August 18th marked the 4 year anniversary of my last chemo treatment, but I was saving my happy dance for August 19th when I met with my oncologist for the "All Clear".  Unfortunately, instead of the All Clear, I had some crazy lab results so she wanted to recheck my labs as well do a neck scan because of some neck pain I had been having.

And so I had to postpone my Happy 4 Year Cancerversary announcements until after my labs and CT came back normal.  The labs came in the next day - back to normal.  After a week and a half of waiting for authorization and scheduling, I finally had the CT yesterday.  Two pokes in the left arm to no avail.  They finally got a small vein on the right side - neck CTs require two injections of dye - one for each angle they scan.  Fun times.  More poison and radiation.  How long before the nurse calls with that All Clear???

Finally!  I see Aurora on my caller id today and anxiously answer, only it's not a nurse.  It's my oncologist.  The numbness sets in.  Doctors don't give All Clears on the phone.  Ever.

My lymph nodes are enlarged.  Not enough to say tumor for sure, but large enough to be noticeable.  After going back and forth on how I've been feeling (absolutely fine other than more tired than normal), it came down to either just keeping an eye on it or getting a PET scan.  Ultimately, she opted to order the PET scan.

So now again I wait.  Wait for the insurance.  Wait for scheduling.  Wait for an answer.  Wait for my all clear.

An All Clear that may not come, forcing me to remember everything I went through and imagine if I would do it, could do it again.  I don't think that I can.

Holiday In The Life of Me

Since cancer first entered my life almost four years ago, every birthday is a celebration of my survivorship. Holidays however, are something completely different.

First there is the overwhelming list of things to do, and by overwhelming I mean my mind can only process one thing at a time during a time when multitasking is essential. As an example, I just remembered today that I haven't delivered Girl Scout nuts to a friend of mine that came in a month or so ago. I have no excuse other than I forgot. Plain and simple. This is the way it goes with most things these days. These memory lapses lead to my feeling useless and even stupid.

Next there are of the demands from the outside world. People calling me, begging me to make decisions about when, where, and what to do. The questions that need to be answered ASAP drive me into tears as my slow mind struggles to process decisions.

Finally, there is the ever-present feeling of doom that consumes me. This may very well be my last Christmas. These may be the last gifts I watch my girls open. This may be the last cookie exchange I participate in, or the last tree I decorate.

Sadly, this is Christmas for me. This and a glass of wine to take the edge off.

What Cancer Cannot Do? Oh Yes It Can!

A friend posted this poem on his Facebook the other day and while I didn't want to shatter the rose colored glasses of many of his cancer-surviving and fighting followers, I DO have much to say about this poem.

It cannot cripple love.  Really?  Because ever since my "journey" with cancer, there is definitely some love in my life that's been "crippled".

It cannot shatter hope.  Really?  The definition of hope is, the feeling that what is wanted can be had or that events will turn out for the best.  I'm pretty sure I don't have any of this left.

It cannot corrode faith.  Really?  Let me see...faith, by definition is confidence or trust in a person or thing.  Mine?  Definitely corroded.

It cannot eat away peace.  Really?  I haven't had peace since my doctor's secretary beckoned me into his office January 29, 2009.  Not even for one day.

It cannot destroy confidence.  Really?  Tell that to my stomach every time I walk into the oncology clinic.  Tell that to me every time I feel the slightest pain, strain, lump, or bump.  Better yet, tell that to my children who question my mortality.

It cannot kill friendship.  Really?  I would laugh at this statement if it didn't make me cry.  I can name just a few people who I feel abandoned me during the worst time of my life.  I can also name just a few people who I let slip away because my "cancer talk" was annoying to them, or they thought it was high time I "let it go".

It cannot shut out memories.  Really?  This is one is just a joke to me.  Thank you chemo for destroying my short-term memory as well as wiping out a good 10 years of my life and leaving it in a thick haze.

It cannot silence courage.  Really?  Did the person who wrote this ever even have cancer?  I mean people give us way to much credit.  I am not courageous or inspirational or strong.  I am none of those things.  I suffered in the worst pain of my life, in silence because I had to.  I didn't choose to.  There was no choice. 

It cannot reduce eternal life.  No, it cannot reduce eternal life.  But it can, and does reduce mortal life.  

It cannot quench the Spirit.  Right again.  It cannot quench the Spirit.  In fact, since cancer plagued my life I have been thirstier than ever; searching endlessly for some spiritual uplifting.  It cannot quench the Spirit, it can only damage it.

Affected

I just found out my cousin has/had thyroid cancer. I nearly had a panic attack on my way to work. It was twenty minutes of praying, holding my chest, deep breathing, and cursing my mom (how dare she tell me right before I have to go to work). So it got me thinking, how do other cancer survivors and fighters react when they find out someone they love has cancer? What do you do? It breaks my heart that she has to deal with this. It pisses me off that she was told that thyroid cancer is a "good cancer to have". I want to take her under my wing and walk her through every step, but this is her experience and I have to let her go through it in her own way. I let her know that if she needs anything from me, to ask and I suppose that's all I can do.

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.

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.

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.

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.