Smile!

The sun is shining and I feel human today!
Smile Large!!

Hanging in There

Thought I should put out an update of my current situation...

I still don't feel all that great. Yesterday, the doctor prescribed another 7 days worth of antibiotics, at the higher dosage, so we can knock this thing out of my system. We need to have the infection gone for obvious reasons, but also so we can start the Xeloda in a couple of weeks.

To steal my friend, Sheryl's line: I feel like a "waste of skin" these days. Not much happening besides couch time. I am working and radiating and got out of the house a bit this past weekend. I just wish I had more energy to be productive in the evening. I'm sure Brian and Dominic are both tired of seeing me under the blanket in the living room.

I do feel a heck of a lot better than last week...but I'd rather feel like me again!

What's a Body to Do?

Talk about one thing after another...

The antibiotics that I was prescribed were NOT well tolerated by me. I was sick to my stomach all day yesterday and so the doctor took me off of both pills. That was a good thing because it meant no more "orange" in my world, and no more upset tummy. Today I was able to eat and keep it all down. There were a couple of options as to what to do, but it was decided to just not prescribe anything different at that time in hopes that I had gotten enough in my system to clear up the infection. I was ok with that because I didn't like the meds.

Well...this morning I woke up with terrible back pains. I couldn't decide if it was a result of lying around for so many days and my back just hurt from that, or if it was related to this infection. As the day progressed and the pain remained steady (even the Advil didn't take the edge off) I realized this was probably not a good sign. When I went in for radiation I mentioned it to the techs. They felt that I should definitely see the nurse practitioner since the doc was out.

What I learned is this: when a urinalysis is done there is a "sensitivity" test done that tells what drugs will be effective for my own specific case. The nurse was looking for this form, but it wasn't in my file. The lab never sent it. So it turns out that of the dozen or so options of what they could have prescribed, the doc (through no fault of his own) presribed one of only two non-effective drugs! So not only was there absolutely no reason for me to have felt so crummy since Saturday!!...but this also means that I was, essentially, not being treated at all!!

They started me on a new drug today and the hope now is that the infection has not spread over the course of this past week. Come on...what are the chances it hasn't?! The pain seems to have worsened throughout the day with little back spasms going on. It's just so messed up!

My mood is greatly improved today since I'm not nauseous, but I can't seem to find a comfortable position right now. I hope these drugs kick in quickly.

Thank you for all the warm and kind comments, calls, and messages after my last post. I always appreciate it when I check my blog and see a reply!

Trying to take it all in stride

I am 16/20 of the way done with the radiation on my left side. I have, mostly, come through it ok...right up to this week. For the most part I feel fine, but now there are residual side effects with which I am dealing.

Generally, when I have a procedure done or I take a medication the side effects are not visible. In this case, there may be some visual changes. I have developed a bladder infection, most likely related to the small area of my bladder and/or intestines that have just barely been touched by the radiation. While my white and red blood cell counts look good, I am still, apparently, subject to infection. They put me on two different medications to clear this up. One is an analgesic that can cause a discoloring of my skin, my tears, and my perspiration (including staining my clothes). In this day and age don't you think they could come up with something a little less 'obvious?!' So now I will have to wear my glasses for two weeks and wear mostly dark clothes. Ugh!

On top of all of that unpleasantness, my tumor marker has jumped again...now to 979. I had prepared myself for a number right around 1000 so I wasn't totatlly blown away. But it's still disturbing, to say the least. In order that we can more quickly get started on the Xeloda, we are going to start radiating my right side on Monday (along with the left for those remaining four days).

It's very beneficial to me that the sun is shining and the skies are blue. And the fact that this is Easter weekend and we are celebrating LIFE and the AFTERLIFE. I guess you could say this is relatively good timing.

I wish all of you a blessed Easter. I hope everyone is able to be with loved ones and spread the joy of the day with hugs and laughter. Alleluiah!

Things That Make You Go Hmmmm...

It just now struck me as bizarre that something as common as generic Ibuprofin can alleviate the discomfort of something as major as cancer in the bones.

1 Down

I started my radiation yesterday. I was fine all day long. I was fine pulling into the parking lot and sitting in the waiting room. It wasn't until I started walking down the hallway into the room that this cloud of reality settled over me. Wow...I just didn't expect it. The whole time I was laying on the table I was tense and (mentally) uncomfortable. I was there longer yesterday because of the initial set-up. I couldn't wait to get out of there. The techs were great though...always so upbeat and friendly. On the drive home I kept telling myself that this is important and necessary and it will all be good. Only a few tears that I'm doing this for the 3rd time.

By the time I got home, and Dominic was there, he cheered me right up and I knew I could handle this again. I was reminded that this isn't just about me. It's about Dominic, and Brian, and all of my family and friends. Amazing what an attitude adjustment does for a person. I'm ready to get back in there today and do some more "zapping."

The field area is about 10 inches long and maybe 4 or 5 inches wide. It's shaped like New Jersey! I would have picked a prettier state if it were up to me. Brian was surprised. He envisioned more the size of a deck of cards (nasty Queen of Spades size?).

I'll report back with more news as we progress through this. As far as updates on others...Mary Jo has had her last chemo (YIPPEE!) and Dave is half way through his (yippee!).

Have a splendid weekend one and all...and I hope the Floridians are having a great time on their vacation!

Slight Change in Plans

At last, I think I have all the information that pertains to the current course of treatment.

Radiation will begin this coming Thursday. We will radiate my left pelvis first, Monday through Friday, for a total of 20 sessions. Then we'll take a break of maybe two weeks, followed by 20 sessions of radiating my right pelvis.

The Xeloda chemo pills will not be prescribed until after I complete the radiation. Dr S and Dr K sat down and discussed it and agreed that there would just be too many side effects to deal with if I were to undergo both at the same time. Because the cancer remains "bone only" there is no urgency to start the chemo immediately. The radiation is being done first to stabilize some of the bones. Once on the Xeloda I will probably be taking those pills for a year...if all goes as planned.

Thank you for tuning in for this Medical Moment.

Note to self...

March 15th blood draw shows a tumor marker number of 649.

That's about what I expected, I guess. Certainly explains the pains. Time for some radiation and chemo to get this all under control.

Because they're installing and then training on some new equipment, my radiation start date has been pushed off to Thursday of next week. I still plan to stop in Monday and see Dr K regarding the Xeloda, though.

Cancer...it's a load o' crap. That's how I remember the name of the chemo pill (Xeloda crap).

Happy St Patty's Day!

Hola!

I really only have a brief moment to check in and let everyone know that we made it home, safe and sound, and that we had a FABULOUS vacation!! More details to come...

Brian's surgery was successful today and we finally made it home at about 4:15. It proved to be a long, long day at the hospital. But he's now resting comfortably in front of NCAA basketball. I haven't decided yet if I prefer being the patient or the caregiver. There are definite downsides to both!

I have enough physical discomfort now that I feel I'm mentally prepared for all that next week will bring with the radiation and chemo pills. Advil takes the edge off, but I'm popping more of that each day than I care to.

Lots of catching up to do yet. Still have to unpack! And I need my swimsuit so I can float down the lazy river this weekend.

I'll do my best to try and get some vacation photos and stories out this weekend.

Hugs!

Home Again, Home Again

But no Jiggity Jig. I could hurt myself dancing like that.

I know there are many of you out there who have been waiting to hear what we learned at the Mayo Clinic. So here it is...

From the time we arrived at the check-in desk at 7am Tuesday morning, to the time we left the Clinic to go back to our hotel room, it was 3 1/2 hours. Included in that time was checking in all of my scans, reports, pathology slides, and xrays, a blood draw, breakfast in the cafeteria, waiting in the exam room, about 40 minutes total with the doctor himself, and a 20 minute wait thrown in the middle while he consulted with his "boss."

They were in total agreement with all that has been done so far in my treatment, from the very beginning. Their recommendation is to now discontinue the Faslodex and start on a chemo pill called Xeloda. This is something I would take twice a day for 2 weeks, then have some down time of a week or two, and take it again for 2 weeks, etc, etc. As with any form of chemo, there are potential side effects. Only time will tell which of those effects I will experience. We are also going to proceed with the radiation, scheduled to begin daily on March 20.

Over the past week or so I have begun to feel a lot more discomfort in my hips and legs. More understandable when we see that my tumor marker has jumped to over 500 in the course of the past two weeks time! The Mayo docs think that to just switch to another hormone type therapy would be a waste, since none of the others appear to have helped.

I called Dr. Kumar from the road this morning and he readily agreed with this course of treatment. I will meet with him after we're back from Mexico and get things set up and started. While it's a little scary, both Brian and I agree that it's about time we do something more aggressive like this. The Xeloda is, generally, well-tolerated. That's a plus.

While it was a short visit at Mayo, we feel it was worth every cent, every mile, and every minute. We also were able to see my family in Mankato on Tuesday night and had a lot of laughs at dinner and while playing cards with Mom and Dad. THAT's the best medicine of all!!

Thank you for all your prayers and good thoughts! Please keep them coming in full force as we step into this new phase of treatment.



Before leaving Mankato today we stopped up to the Oncology Clinic and wished Dave good luck with his infusion. You know...Dave...the one who's still holding on to all his hair!! Looking good there little brother!!

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!