Happy Brian's Birthday!

This is something I wrote about a year ago. It's what I submitted to the Press when I was interviewed for that article last year. I don't know how many of you ever saw it, so I thought I'd post it here today.



Starting chemotherapy in January, 2001, was a step into the unknown. Cancer itself is difficult enough to face. The horror stories that a person hears about others who have undergone chemo leave you terrified as to what your own experience will be. The Cancer didn’t make me feel sickly, it was just a lump, after all. The chemo, on the other hand, would change every routine of my daily life.

My then boyfriend, Brian, and I had been going out for 16 months when I was diagnosed. Timing is everything! Could our relationship have survived this invasion if we hadn’t already invested that time in each other? We’ll never know that for sure. What I do know is that he was my rock. He went to appointments with me and helped me out in so many ways…sometimes just by sitting quietly by my side…always by making a concerted effort to keep me laughing and smiling.

So it didn’t seem fair that my first day of chemo fell on his birthday. He was insistent that I not change the date. “Get it started so you can get it finished.” And he agreed to be there with me that afternoon. What could I do to lighten the mood for his day?

We were all situated in the chemo room at the Vince Lombardi Cancer Clinic; I was in the big recliner all hooked up to the meds and Brian was on a stool looking over some papers he had brought along for work. I caught a glimpse of “her” through the narrow window pane in the door. Brian was oblivious. Suddenly, here she was! A big hairy gorilla in a yellow polka-dot bikini singing happy birthday! Everybody there enjoyed her singing and poem and silliness. Brian blushed, but I think he enjoyed the attention…I have pictures of him kissing her! It brightened the afternoon not just for the two of us, but for the other patients and the staff as well.

Chemo started, but life went on! There were tears and discomfort and grey days…but there was also laughter, and a new appreciation for life’s details. And we got through it. December, 2001, Brian proposed and we have been happily honeymooning for 2 ½ years now.

My cancer has since returned, and has now spread to my bones. We’re dealing with that in the same upbeat, positive way. No additional chemo has been needed yet, but we’re ready to deal with that when the time comes. Chemotherapy is traumatizing, but attitude makes all the difference, as does surrounding yourself with the right people.



Thanks for being all my "right" people! :)

Here's the Latest

For those of you who don't know, my tumor marker number went up again in the past month. I am now at 349. I doubt that many (any?) of you really keep track of that actual number, but I throw it in here for my own benefit so I can look back and see where I've been and where I'm at.

One of the issues that was weighing heavy on my mind was where to send Dominic next week while we're at Mayo. In a semi-serious tone he asked if he could stay with his buddy, Ryan. So I called Ryan's Mom tonight and she said she would be only too happy to have him there. One more thing I can check off my list!

I saw Dr. Kumar today. He, his nurse, and Dr Schulz's nurse (Dr S wasn't around) all seemed genuinely thrilled for me that I was able to get an appointment so quickly and easily at Mayo. They're all pleased that I'm going there to seek another opinion. In fact, Dr K said I'm almost doing him a favor because he's debating what medication to put me on next (eliminating the Faslodex) and now we can see what they recommend at Mayo. He smiled and laughed when he said that...and so did I.

I get the impression that Dr K and Dr S are not in total agreement about the radiation, so it will also be good to have another opinion on that issue. And Dr K reiterated today that he wants to delay chemo for as long as possible. Chemo for me this time will not be like it was in the past. It wouldn't be 4 sessions and done. It would be more like X number of sessions, take a little recovery break, do more chemo, another break, more chemo, break, chemo, break, chemo, break, etc, etc, etc.

Tomorrow is Brian's birthday. I have to run and finish the "assembly process" of his gift. He's very hard to shop for. I hope he likes this surprise...I'm pretty confidant he will. (can't give it away in case he decides to check in on the blog himself)

I imagine I'll post once or twice more before we leave for MN. Until then...good night, and God bless.

After a Bit of Discussion...

...this is what Brian and I have worked out:

We are going to leave for Minnesota on Monday, the 27th, after Dominic heads off to school. (so, no, he is not going along with us) We plan to just get a hotel room in Rochester for Monday night so we don't have to get up at 4am in Mankato on Tuesday! As of right now, we think we'll 'hotel' it on Tuesday night also. If we need to stick around Wednesday night we'll probably make the trip to Mankato then.

Today I'm searching through all my bags/boxes/containers to see what I have that will most easily accomodate all my many records, reports, x-rays, pathology slides, etc. It's a LOT of stuff! And HEAVY! Good thing I'll have Brian's muscles along. He suggested we get a shopping cart. :-)

It was 15 below zero here when we woke up this morning, and windy. Brrrrr. For oh so many reasons, we will need to just veg on sunny, sandy beaches soon.

Off I go to dig through closets. Find something to do inside today and snuggle up!

Rochester, Here I Come

It's official! I have an appointment at the Mayo Clinic in Rochester at 7am on Tuesday, February 28th. I'm not sure yet if we'll go west on the Saturday, Sunday, or Monday before. There are a number of things to factor in.

So on my lunch hour today I will begin to gather my records. That's a pretty big undertaking with 5 years of information to gather.

I will keep you posted on how the plans work out. They said to plan on 1-3 days. Throw in travel time and we're looking at practically a whole week! Not sure yet what to do with Dominic. Hate to yank him out of school for this, but also hate to be gone a week at Mayo and then gone 10 days on vacation and see him only on Friday.

Anyone available to keep Dominic at your house if we leave him behind while in MN? (he'll HATE that!) Also, Brian has his pre-op for his knee surgery on March 2nd, so maybe he'll need to stay home with Dominic so he can keep that appointment. If that happens, is anyone available for a road trip --- either all the way from WI, or just from Mankato? I don't mind doing the drive myself, if it comes to that. I just don't know that I want to sit alone for hours on end at Mayo.

I'm glad that they're able to get me in before the radiation is scheduled to begin. Our insurance may be fairly useless for this additional opinion, but it will be worth every cent! You can't put a price on peace of mind!!

Stay warm...

Big Wheels Keep on Turnin'

Well, here it is, a snowy, blowy, winter stormy day. No school for Dominic and no work for me! Can you believe it? They closed Muth before we ever even opened today. That has to be a first!

Fortunately, the worst didn't hit until a little later in the morning so I was still able to keep my appt for my CT Scan. I am now the proud(?) owner of 4 new tiny tattoos. They look like blackheads, just like the other three I have. These are used to line me up properly each time we do the radiation. I'm not sure why, but it surprised me when she told me that's what she was doing. I guess I wasn't expecting it today. Reality check!

Mayo got back to me this morning with an additional question regarding my current course of treatment. The woman I spoke to said I should hear back again probably today or tomorrow to actually schedule the appointment. I really, really hope they can see me next week, or early the week after. We're in Mexico from 3/4 to 3/14, I have an infusion the 15th, Brian is having his knee scoped the 16th, and I should be starting radiation the 20th. March is starting to look a little crazy!

I'm off to make some homemade chicken noodle soup and some brownies. What a perfect day to 'play' in the kitchen.

Happy Snowman Building! Be safe y'all!

Because I Think It's The Thing To Do

I went on the Mayo Clinic website today. There was a little button to click to make an appointment. After looking around a bit on their site...I clicked the button. I filled out a very brief form with the most basic of information. That was at about 1:00 this afternoon.

My cell phone just rang and it was someone from Mayo! I gave them my medical history and now they'll call me back within the next few days to set up an appointment. How speedy and efficient!

I'm hopeful that they can schedule me in some time within the next 2 1/2 weeks (read: before we go to Mexico). And I definitely want to get there before we start any radiation here, so I know for sure that we're about to do the right thing.

I'm all jittery at the moment. I don't know if it's good nerves or scary nerves. Probably a combination of both.

So head's up, those of you in Mankato! We may need some overnight accomodations again soon!

I Can't Begin to Imagine!

I got a call this morning from my friend, Sheryl. I could tell by the shake in her voice that this was not going to be happy news. The husband of a friend of ours was killed in a snowmobiling accident last night! Every hair on my body stood on end. Some of you know Dave, for sure. He's the husband of Jody, a step-cousin of Brian's. They have two little girls at home. I can't seem to get this awful image out of my head. How does one even begin to deal with such an unexpected, overwhelming, major life-altering loss?!

I'm doubly freaked out by the fact that Brian is right now, at this very moment, up north snowmobiling with "the guys." I know he's safe and having fun and in no way any further jeopardized than he was before Dave's tragedy. But it makes my worry meter go way, way up!!

Someone asked me if I'm still planning to drive to MN today. Sure I am. I told her that, if I didn't, I would find myself driving up north and dragging Brian home instead. (And we all know that would just get ugly.) So I'm going to MN to see my family there and hug them all. And I'll breathe a HUGE sigh of relief when I see Brian at home on Sunday.

My heart goes out to Jody and her little ones, and all of their family and friends. What a sad, trying time for them all...and what a hopeless, helpless feeling for those of us who want to reach out in some way and ease their pain.

Life's too short. Hug your loved ones extra tight today!

At Last!

Finally my phone rang and it was Dr. Schulz. He had semi-legitimate reasons for not calling before now, so he's mostly back in my good graces.

So here's the plan...

Next Thursday, the 16th, we're going to do the CT Scan to get a closer picture. Dr S and Dr K agree that radiation is warranted, along with the Faslodex injections. I am not symptomatic enough to warrant the IV radiation (Quadramet) at this time, so we will be doing "only" surface radiation. The results of this new scan will determine what side we'll radiate first. They seem to have great faith that the Faslodex is going to kick in at some point and result in some improvement.

No radiation will actually occur until after we return from sunny Mexico! That is a relief to me. I don't want to leave the country not knowing what side effects could occur from this.

And that's that. Scan next week, radiation starting mid-March. In time, I'm sure I'll have more details to share regarding the radiation.

Thanks, again, for waiting this out with me!

Grrrrr...

Well here it is Thursday and I still have not heard back from Dr. Schulz!! I just now called again. He is not in yet, but his nurse, Judy, said she will "force him" to call me. I like Judy. I am confident she will get the job done!

Stay tuned...

Antsy

No real reason for this post. Just feeling antsy waiting to hear from Dr. Schulz (or someone!). I called. Unfortunately, I had to leave a voicemail. But maybe that will get things moving.

Ring phone, ring!

I'm just ready to get going on something if we're going to get going on something, ya know? We leave on vacation in less than four weeks now. Tell me if there will be some sort of action now, or when we get back, or not in the foreseeable future.

Ring phone, ring!

To Quote Yosemite Sam...

"Blast it!"

Osteo-blast it, that is. It's all about my osteoblasts.

I told Dr. Schulz that I felt like I was back in middle school cuz all these terms were coming back to me from biology class. I learned a lot about my cancer in this 1 and 1/2 hour appointment today. (and here I thought it would be a quick in/quick out)

It's amazing how a bone scan is good for some things, and PET scans are good for other things, and MRIs are best used for some situations, and CT scans are best for other situations. It's like a game show...which scan has Carol NOT had done in the past three months? The answer is (D) CT scan. But it looks like I will probably have one done next week.

My cancer is not of the Lytic variety. That means it doesn't look like swiss cheese. It isn't "eating" away at the bones. The Zometa is intended to prevent lytic lesions. Instead, my cancer is osteoblastic, meaning my bones are growing in odd, bad ways. While it seems like this should mean I have more bone and they should be stronger, that is not the case. Bad bone growth weakens the bones.

What I also learned today, from my MRI, is that there are a LOT more spots than what we thought. Most of them are small, but quantity isn't good either. And, strangely enough, the left side appears worse than the right side, even though the PET scan shows the opposite and my only really sore spot is on my right.

Dr. Schulz feels that it's best if we do something sooner, rather than later, in terms of radiation. He wants to wait and talk to Dr Kumar on Monday, but he's leaning towards doing a CT scan next week from my breast bone to my knee caps. You see, there's even cancer in my femur bones that we didn't know about. The MRI films were very interesting to look at. It shows me in layers; one set layering me from top to bottom, and one layering me from back to front.

Radiation options are as follows:
1. radiate everything all at once, which can drastically lower my blood cell counts and cause greater discomfort (gee, that doesn't sound like much of an option)
2. radiate one half of me, take a month or so off to allow for recovery, and then radiate the other half (maybe more tolerable?)
3. do a one-time intravenous radiation dose at the hospital, which could drop my blood cells significantly, but because there are so many spots in so many places it might be the most all-inclusive

Dr Schulz knows we're going to Mexico in March. We may or may not start radiation before the trip. He would hate for me to fracture something while south of the border. It would spoil our vacation, to be sure, and where would I go for treatment? We debated which of those two concerns would be the greater!

Nothing has been decided at this point. Like I said, Dr S and Dr K need to consult on Monday. I will hear back from Dr S either late Monday or on Tuesday. I feel like radiation is a "good" option for me. Yes, my symptoms are extremely limited right now, but I can't help but wonder where I'd be now if we hadn't done something to treat my mostly asymptomatic neck, back in 2004. And as Dr Schulz said...we would hate to have something fracture, need to have surgery done to put in a stabilizer of some sort, go through recovery time, and then do radiation. Hopefully, by doing radiation now, we can avoid a fracture in the first place.

Does all of this make sense to everyone? Oddly enough, the appointment was quite fascinating. Dr Schulz is an intelligent man and covered all areas of concern with me. It did seem like we were discussing someone else, or like it was a classroom situation though. I think I'm ok with all of this. I don't feel panicked or freaked out in the least. Maybe because this feels like an "active" approach? (but wait, we weren't going to focus on that anymore, were we!)

Blast the Osteoblasts with Radiation, I say!