Me and Tim Conway

I was visiting with a friend of mine a couple of days ago and she asked me about my blog. She said she used to check it daily, but hadn't for a really long time. I must say, I haven't thought about it for a really long time, so I creep back here and peek back into a time that seems like a forever ago.

Me today, 1 year and some change after the whole life-changing diagnosis/surgery, how am I? Well, I am still getting an infusion of Avastin every three weeks and will until No(more)vember. And I must be honest, I actually feel like a very old woman. Joint pain...and I mean a LOT of it. It's mostly in my feet, thumb joints and my collar bones. Yeah...weird stuff. They tell me this will pass. I sure hope so. I was giving one of my kids the "thumbs up" as she did a new trick at her birthday/pool party on Sunday and I realized that my thumb couldn't or wouldn't point up to the sky. I have a 45 degree angle at best. And Lord help me, if I have to sit for any period of time and have to get up and go somewhere. I shuffle like Tim Conway. I look at this time as a glimpse into my future. I would guess this is where my aches and pains will settle themselves as I age. If they do go away this winter (yes, I am skeptical) I will greet my new vim and vigor with a greater appreciation. I took my energy and physicality for granted. I know that now. Now that it isn't there anymore. But it doesn't stop me. It can't. I'm a tough ole' broad.

I'm not sure how much I'll rattle around in this blog in the future, but as long as I do, I will always find the can in cancer.

Some final chemo thoughts. (Warning PG-13)

Okay, I'm sorry. I know we had a good thing going here. Great Chemistry. I dropped the ball. I've got a real problem with commitment. It's not you...it's me. My last blog was October 5th! There is no excuse. I should have called...

Actually, my chemo (that ended on December 2nd-2 days before the opening of the new cancer center) was very uneventful. I assume you all understood that no news is good news, but I left you hangin' and that wasn't nice. I got through the treatments with most of my hair and a couple extra chins. I am not sorry I am done with getting 3 litres of fluid dumped into my abdomen every 3 weeks but in a weird way, not going every week for the Taxol has been a bit of a transition. You see, the people at the U of  I cancer center are really amazing people. I miss seeing them regularly.

My new routine is a continuation of a drug I started with chemo last August. Avastin is the name of the drug and it locates any cancer cells and cuts off the blood supply to them. The study I'm on is trying to get Avastin approved for the treatment of ovarian cancer. (It already has the stamp for colon and a couple of other cancers.) I  go every 3 weeks for an infusion that is supposed to last 30 minutes, but I usually end up being there all morning. This I will do until August...a year in total. The only really unfortunate side-effect is joint pain. Yep, I now know what it feels like to be my 100 year old grandmother. And things are slow to heal, so for the last 6 weeks I have had a pain in my throat (not like a typical sore throat, but lower) and I will be getting that checked out next week for a possible ulcer. Nice, huh. I'll keep you posted...pinkie promise.

I leave you with an observation I've made about this whole experience...(James, "girlie parts" allert.) Male gynecological oncologists should be homely. I'll explain.

At the University of Iowa you have a doctor.  With the hospital being a teaching one, they are assigned various levels of "help". My doctor has a few, what they call, Fellows that work with her. My favorite is Matt Carlson. He assisted on my surgery and lets face it, when someone has looked around your insides, it bonds  you. Well, Matt ( While attractive, is more like my much younger brother...I digress) must have been in another surgery at the time of my appointment because they announce to me that another Fellow is going to see me that day. Okay, I kid you not, the door opens and in walks the most attractive person I've seen in in probably my entire life. (Sorry, Mark, but you were there, it's true.) To top that, his name is, Dr. Sean Michelle Stephan. Yes, he's french, complete with accent and everything. I actually think I heard violins, accordians and smelled a fresh baking baguette. Seriously. Well, we chat for a moment, and then it occurs to me what he is actually there for...a medical exam. I am not a person easily embarrassed, but atractive people should not be allowed to examine your Hoo Ha.  I know I was the only one who was being anything other than professional, but no joke...awkward! That's when I closed my eyes, and immediately imagined I was cleaning the cat litter box until it was over.

Week 10

Good morning! The weather is beautiful this week and I have been completely remiss on blogging. Why? Because my treatment has been very routine and boring up until last week...

I think it's safe to say that even nurses have bad days, and mine did, but that was just part of what made Friday a bit to be desired.

Mark dropped me off at  the University of Iowa Hospitals and Clinics at about 7:30 am, my usual time to get there. I got my blood drawn by the lovely women in the lab, got my vitals checked, and was asked if I needed to go to the bathroom. I did. I went. It was the week I see the doctor (every third appointment) and so they ushered me back to my exam room, I removed the proper amount of clothing and waited my turn to be seen. I noticed the Times magazine in the magazine holder and decided to read about Dr. Oz's Cancer scare. It was all about polyps in his colon which immediately made me have to go to the bathroom, so back into my clothes I jumped and I hit the toilet one more time. Mildly annoying.

After my exam (CA125 at 17, yay!) I went over to the infusion center to wait for a bed. At 10:30, I was finally given a room. And a roommate. I haven't had a roommate before. I'm not guaranteed a private room and it was probably my turn to have one.  He was a very nice young man from Ethiopia. The nurse that was assigned to me I had never had before. I've spoken to her before and I'm sure she's "checked" on me once or twice, but it took her 3 tries to finally get my IV in. That means 3 separate IV kits, 3 separate sticks and lots of running around before the juices were flowing. These juices flow for about 7 hours.

My wonderful friend, Jackie, called me and we negotiate lunch, Buffalo Wild Wings. While I waited for Jackie and food, another friend of many years stopped over. Shawna stayed for lunch and then had to get back to work but not after many laughs and stories. Once Shawna left, Jackie and I settled in for the afternoon.  The TV turned on. The Ethiopian gentlemen to my left must have wanted to check out what was on. Unfortunately, he had tuned it to that Untamed Sports channel. Who knew that would be the channel of choice for my new roommate. So we watched a few fishing/hunting shows and then Jackie and I started growing tired of it all. The deal-breaker was the 30 minute program/info-mercial about Hank Williams (Senior not Junior) and it hit me...is this guy next to me really watching this channel? Really? Or have we just been watching bad television for the last 3 hours purely out of a misunderstanding? Nothing was ever confirmed, but I finally asked him if he was watching the current show and he looked at me like, "No, Lady! I have no interest in any of this crap!" And I turned to something much more worth watching...The Ghost Whisperer! '

After a bit of flipping, flopping elevating and the like (the usual routine) I was released to go. After a nice ride home from Jackie, I was home about 7:30 pm. A long day.

Round 2

I just finished reading Gilda Radner's book. Yes, I know, she died from ovarian cancer in the late 80's. You are asking yourselves why did I read this book? I can tell you. It was an amazing account of how detection and treatment of this disease has changed so much in the last 20 years. One of the chemotherapy's that I am taking (Carboplatin), she couldn't even get in the US if you didn't know someone in Connecticut. Seriously. They used to do a "second look" surgery after you finished chemo, where they would open you back up and look to see if they saw anything. They don't do that anymore. They have the data that shows it's not beneficial. Walking her journey made me feel very lucky to be having ovarian cancer now.

The real reason I read her book was because I think Gilda Radner was one of the funniest people...ever. I had one of her albums as a young teen. It was hilarious and filthy. "Let's Talk Dirty to the Animals" was one of my favorite songs. I can still sing most of those lyrics. Did I mention it was filthy? I can't believe my parent's let me listen to it, but I was so thankful. Maybe they knew she was something special too.

Funny really gets me and she found humor in cancer. A kindred spirit. She and I share the same astrological sign...yep, cancer! Funny! She once had her picture taken with a newborn...comparing similar hairstyles...funny! And what I loved most about her book, it doesn't end with her dying. It ends with her final thoughts on cancer. What she learned about herself and her cancer. She called them "cancer's wonderful ambiguities". It's really not about winning and losing, it's about rolling with what is put in front of you and making the best life you can. That made so much sense to me. Important words even if you don't have cancer.

On that note, I have some good news. Round 2 started off with a bang and ended with a gurgle. I'll explain. Before my surgery I had a CA 125 of over 1,000. Normal is under 35. Yep, not good. On Friday my CA125 was...15. My doctor said that no one ever get that low after only on round of chemo. I assured her she must have forgotten that I was an over-achiever. And it might be not so good I'm in her study because I will continually skew her results! But that is HUGE news! It means the cancer is leaving the building!!! Hence the bang!

The gurgle you might have already heard about via a post on facebook,but on the way home my port started to leak..a lot. Not sure I was really comfortable with a chemo/saline cocktail outside of my body, I called the on-call doctor and she assured me that this sometimes happens and that if it is still leaking the next day to call back. I could only get it to stop if I laid on my back, slightly to the left side with my right leg extended as far out as possible. Yeah, 2 or 3 days of that didn't seem too doable so I opened a new bottle of Super Glue and glued that sucker shut. Yesterday, I picked the glue off and it started to leak again, so I just glued it back shut again. 'nough said.

Round 1 over, round 2 underway. Hair is starting to come out, not in clumps, but I'm feeling that around the corner. As per Lydia's request, I am trying to keep it on my head until school starts. She really doesn't feel comfortable having a bald mom walk her to school the first day. I will try my best to facilitate that. I'm feeling good, fatter than ever and enjoying each day for what it is.

Uneventful

Chemo Friday was just that. Uneventful. Aside from the waiting for a chair almost as long as I waited for a table on Valentine's Day at Red Lobster in my youth (3 hours then/1hour 15 now) everything went off without a hitch. They gave me Benedryl by mouth this time...MUCH better. The Taxol went in without problem, but as the day wore on and it got close to closing time, they wanted "last call" to be coming soon. They went into debate on whether they should push the last little bit in quicker...ah...no, thank you. Let's leave well enough alone. And that's just what they did...nothing. I was out by 6:15 pm. Doable.

My husband Mark and I were just discussing this morning before he went to work, that it's been one month and one day since my surgery and about 6 weeks from when I was diagnosed. Wow. That seems hard to believe. I'm still on "lift nothing over 15 lbs", still watching my eyebrows, lashes and follicles for any signs of withdraw. Nothing but the average 80 hairs a day like the rest of you. I'm guessing that since I'm on a slightly different regimen than the standard recipe, it might take a bit longer to end up on my pillow. Purely my own prediction. We'll see. My new question about hair loss, and you'd think after 20 years of hairstyling I'd have all of the answers on this subject...Do you lose your nose hairs?

I have to take a moment to tell you all thank you. Thank you. Now don't get me wrong, it didn't take some cancer epiphany for me to know that I have an amazing community of friends and family. I already knew this. But it did take cancer to have all of you come out in droves, bombarding me with the shear volume of support via emails, cards, visits, gifts, food, phone calls and overwhelming amounts of love. I don't wish cancer on anyone, but if I could make sure that everyone had this feeling, in their lifetime, this would be a pretty awesome world to live in. Maybe that will be my new mission.

Uneventful. At least on the cancer front. I'll take it. It makes room for life. I went to a lovely wedding this weekend. I spent an evening with wonderful friends. My kids seem happy and well adjusted. My husband is amazing. Life. All the stuff we get up and put our feet on the floor for every day. Uneventful. I'll take it.

This could take awhile...

Last Friday we see the doctor, answer a few more questions for the study I'm in, and reschedule for my next weekly appointments. Yes, I will be down at the University every Friday...you now know where to find me. After that, we started down the Green Mile...okay, not that dramatic, but the hallway that leads to the infusion center. (aka: where you get juiced) Little did we know what was in store for us.

You know you are in trouble when the first thing the woman who is giving us an overview starts her spiel with, "We are building a new cancer center. It will be done in January. Until then, we have more patients than we have chairs/beds for so you could possibly wait 2 to 3 hours before you get your treatment." How do you respond to that. I joked that they should give you a buzzer like at the restaurants...no joke. They do. It will reach anywhere in the hospital...watch out gift shop. I felt like I'd won first prize when we only had to wait 45 minutes!

So, I'm sitting in the infusion chair because they can give me one of my chemos (this is a 2 chemo day) sitting up while the other goes into my belly while I'm laying down. They get my IV in and start telling me of the benefits of antihistamines while she is pushing Benedryl into my IV...quickly.Too quickly. Picture "out of  body experience/bad amusement park ride/ heroine trip. Since I'm out of body at that time I can tell you, Kim did not like this AT ALL. I tried to reach for a graham  cracker and missed. Once I got the graham cracker, I tried to take a bite and promptly put it into my cheek. This was hold-up #1. They had to wait for those effects to wear off before I could take my oral anti nausia medicine and the start the Taxol. Now, you can also have an allergic reaction to the Taxol if they push it in your IV too quickly...yep, you guessed it...after about 3 minutes, I felt like someone was standing on my chest and then heat started to rise up my neck, into my face and before they interrupted the reaction it felt like I was floating from my nose down in warm water. Weird. That was Hold-Up #2:

Now they had to wait for me to recover from the reaction of the Taxol. That means that when they get to start the chemo again, they have to allow the Taxol to drip slower into me. This means a longer infusion. And when I finish that round up, the clinic is about to close so they have to take me over to the inpatient floor to administer the Carboplatin. The belly juice! Yes, there were a couple of snafoo's getting that chemo up to the floor (It has to be ordered from the pharmacy and it was somewhere between them and us for a LONG time.) it was dripping away like it should with no problems. When that is in followed by a bag of saline (about an hour total) I then have to spend the next 2 hours laying on my right side, then my left, then my feet higher than my head, then my head higher than my feet. I suggested we speed up sloshing the stuff around by me simultaneously doing jumping jacks and hula-hooping. No takers. 

That makes my first experience with chemotherapy. We left our house  at 9:30 in the morning and we got home at 11 pm. I think this worked out all of the kinks and they know how my body works just a little bit better. Fortunately, I don't have to do the 2 chemo regimen every week. For the next 2 weeks I just get the "Swimming in warm water one" and we will hope to avoid that experience in the future. I like my anti nausea medication. It keeps me feeling pretty normal. So far, I'm just tired. I've been a mother for 11 years, what's new.

A New View of Chemotherapy

I was waken from my slumber this morning (Okay, truth: I had an idea on the way back to bed from going to the bathroom) with a pretty cool way to look at chemo.

We are big remodelers in our household. Our house was deemed "uninhabitable" when we moved into. Needless to say, I am comfortable in that arena. I lay tile, mud drywall, paint, decorate, remove brick chimneys...I digress. Anyway, I had this idea. What if I look at the cancer surgery as the "major remodel"? We opened up a few walls, removed the clutter, and made the space more efficient. Hard work? You betcha, but so important if we were going to keep the building structurally sound.

Now that I have the new space, it's so crucial that I maintain it so it lasts a long time. I've decided to look at chemotherapy as...house cleaning. If  I don't clean my house regularly, the mess will build up all over again and it will eventually become unsafe to live there. I will be forced to move out. Unfortunately,  no matter how much I'd like to only clean house once. I can't. It has to be done on a regular basis, especially if I am not the only one living in the house. It is so important to straighten things up, make sure things are in there place and to be as organized as possible to support the major work we did in the remodel. Sometimes life gets so busy or time is of the essence (A holiday gathering, perhaps?), what do I do? If  I am lucky enough to have the means, I hire someone to clean the house. This is what I'm doing. They come to my "newly remodeled house" at a regularly scheduled time. I find out their routine, and I will know what they are doing, how long they will be there. I become comfortable that my house will look and function so much better when they are done and gone.

When you incur a "special cost" to keep you property up and running, it is not without sacrifice. I will have too tighten my belt. I might  not be able to go out as much as I used to, perhaps even not eat as I usually did. And sometimes house cleaning can even lead to more minor remodeling.  It is widely known that this service, can be hard on the roof. It has been known to temporarily damage the shingles. The shingles can't do their job as efficiently and I've heard in a strong wind...they can fall off. In this case, I will have to cover the roof with a special tarp. I understand the functionality of this tarp and ask you to please remember that the tarp covering is temporary no matter how much it might detract from the neighborhood.

In a few hours, I have my first house cleaning. I'll let you know how it went. I hear it might take awhile, but as that saying goes, "anything worth having is worth waiting (around) for". I'm sure I will be pleased with their work and glad that my house is one step closer to that holiday party. Oh! What a party that will be.