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.