Hartford Breast Cancer Ride

Hi Everyone,

A couple of things. First, good news, my latest tumor marker test results have come back down to a 38, which is just a couple of points above the high side of normal again. Yeah! Dr. Bowers is very pleased so we’re going to keep with this treatment path.

 

Second, The Tittsburgh Wheelers completed our two day, 110 mile bike ride the weekend of August 7-8. We had a riding team of 10, a crewing team of 12 and had plenty of support once we got to the hotel/casino for day one camp.  And when I say camp, I mean a comfy king size be in the hotel. All in all I think we had about 30 people together this weekend. The weather was our biggest challenge, day one it rained, day two the heat and humidity was off the charts.

I will admit that I was the “weak tit” on the team, pun intended. When we got to the hotel/casino and cleaned up, we enjoyed some adult beverages, dinner, war stories and a great night of entertainment with the other riders, crews and supporters. 

The Tittsburgh Wheelers raised over $10,000 for Open Arms of Minnesota and Susan G. Komen for the Cure MN Affiliate charities. I am so proud of our team and what they accomplished this past summer and weekend. Thank you Tittsburgh Wheelers! 

And a big thank you to those who contributed to our team financially, we could not have done this without your support. 

For those who would like more detail about our experience on the ride, please read on. 

Day One: Mall of America to Treasure Island in Red Wing. Total miles 50 plus a 35 mile extension loop. 

We all got to the parking lot at about the same time. Day one was “decorate your helmet day” so decorating was taking place in the lot. Guys in pink tiaras are my favorite! The opening ceremony was really nice; A little fun, a little emotion, a lot of inspiration. We got started about 8:15 and headed out into a light rain. I think most riders appreciated the temperature.

(Mike, Jim & Sue, Mikes daughter Elle Edberg at Opening Ceremonies

We call them the Drafting Edbergs!)

I was struggling from the get go because about 3 miles into the ride we came upon a long and steady hill. You know what the best part of being on a team is? The help you get from teammates. Sue Edberg fixed my chain that popped off and Jeff Willie stayed with me for the rest of the day and helped me make it mile after mile. 

John Knievel, co worker and teammate, hooked up with another rider that was more in his “fitness and riding capability”. He just completed Colorado’s Triple Bi Pass ride a few weeks prior to our ride so he was more than qualified to be a Wheeler. Had he not taken the 35 mile extension loop after the first 50 miles, (yes, I’ve already recommended a psych evaluation to HR) he and his riding partner would have been the first and second riders to get to Treasure Island.  Way to go John!

The Edberg’s, Jim, Sue, Mike and Elle, were keeping pace ahead of the rest of us.  They had the whole Edberg Team Drafting thing going. Jim had a problem with his bike chain on the last leg which prevented him from getting all 50 miles in the order they were intended on the first day. But after he got the chain fixed at the final destination, he turned back around, met up with his family and they all rode in together. We love the Edberg’s!

Speaking of family, Jeff Willie and his sister Pam Carlson, long time friends of J.R.’s, came in from Denver CO and Alexandria MN to ride with us. When Jeff saw me struggling on the first leg, he slowed down his pace and stuck with me. They are both qualified to ride with Knievel but stayed with the slow pokes instead. Thank you Jeff and Pam! I really needed that!

The rest of the day, Jeff, Pam, J.R., our neighbor Denise (amazing woman!) and I were together. I really had a great time with everyone. By Pit stop 3 I had my fill, my neck was starting to hurt and I decided to get into the sweep van to the last stop and cheer in the gang. We love Sweep Van 7! Everyone made the first 50 miles on day one but me. I’m OK with that. 

We got checked into the hotel casino, had some lunch, napped and got cleaned up. Before dinner we managed to have ourselves “Happy Hour with the Edberg’s”, and hooked up with some of our illustrious crewmates who manned Pit stop 1, the best pit stop! Sitting around with friends and family swapping war stories is one of my all time favorite things to do in this world. They always make me laugh. Then we headed down for dinner, presentations and entertainment. 

Kari Mitchell, friend and Executive Director of the ride, asked me to speak at camp. She wanted me to tell my story and told me that I’d go on right before the comedians. Oh no! I think all in all the speech went well and the night in general was a huge success. Nicky and Zach made the trip down to Red Wing to support me during the speech and support the Tittsburgh Wheelers, thank you so much. Nicky, you’re my favorite.

Day Two: Bike back to Mall of America. Total miles 60. 

Day two was brutal to say the least. The temperature got up to 95 with a heat index of 109. Whew! But at least when we left camp we had a 2 mile hill to climb for our first leg of the ride….Denise and I met the team at Pit stop 1. She had a knee problem and needed some medical attention; I have no excuse other than I didn’t want to go up that hill. When we met up with the gang they said the hill was “challenging”, the ride down was super fun. We should have had the van drop us at the top of the hill.

The next leg was pretty easy; I believe it’s an old train track route. We were pretty much all together through that leg and that was really fun. The temperature was climbing and we knew the Tittsburgh Wheeler crew was the next stop. I wanted to spend as much time with them as I could so J.R. and I jumped into the sweep van to Pit 3.

Pit 3 had a carnival theme with games and music and everyone was all dressed in pink. This was the best pit stop yet. They even had Twinkies! When the Wheelers got to Pit 3 the heat and humidity was off the charts. Sue came in and was trying to cool off but was seeing purple spots and shaking. Not good. At this point I was more concerned for my friends’ health and well being than I was in anyone finishing the ride; it was really unbearable out there. We started to line up sweep vans to get us to lunch. 

 (Mike and Jim Edberg cooling off by pouring water over their heads)

Next thing I know, Mike, Jeff, Pam and Denise all started to get ready to ride. I told Mike that I didn’t want any of them to get sick riding and his response to me was “Yeah, but I don’t want you to have cancer any more either, so we’re going”.  I love my friends. And off they went. 

J.R., Jim, Elle, Sue and I met up with the gang at Pit 4 and you could tell that last leg was a killer. Everyone was looking pretty beat up and tired and I really thought that everyone was done. Thankfully Jeff’s experience as ski patrol and a veteran biker came in handy and he got the team back in shape quickly. One more leg to go and the temperature was still rising. I was dying just standing in that heat; I knew I wasn’t getting on the bike again and there was no way I was going to let Sue get on hers either.  But don’t you know it; the rest of them got on their bikes and went that last leg. My God do I love them! I started to cry watching them bike away. 

Destination: Mall of America

It was close to 3:00, I knew John had to have been in by several hours by now and was not worried about his safety. As it turns out he was in by 11:10 that morning. Way to go!

The Tittsburgh Wheeler crew was there and cheering in the riders. Sue and her sister Dolly preemptively went for the truck and drove the route in case they ran across any riders who needed help. The Sweep vans were working over time. They picked up Denise about 5 miles from the last pit stop and brought her back with them. I know that killed her to get in the truck. OK, 4 down. As the “cheerers”, we were drinking tons of water and icing ourselves down. Riders were being taken away in ambulances! 

Jim and Elle were the first riders in, 6 down. Next in were Jeff, Pam, J.R. and Mike. My team made it! It was everything I could do not to bawl my eyes out. They were there, they were safe, and they made the 110 miles in the BRUTAL heat! I was so happy to see them. 

The event went well, very professional, loads of fun and all for a good cause. A huge thank you to Kari and Bo Mitchell for their hard work and dedication through the year to prepare for this event, you did a great job! 

For those of you who have not done something like this before, you can’t imagine the commitment and sacrifice that it takes to get ready and participate. The fund raising and training are a commitment in itself, but actually completing this physical of an event, especially one taking place in such extreme heat, is both physically and emotionally draining. It has been a life changing experience for me. I am so proud of my team and honored that they sported the Tittsburgh Wheeler name. 

Thank you to everyone who participated this weekend. I am ever grateful. Last but not least, J.R., I love you.  Thank you for being by my side and making every day with you a blessing.

Next up, the 3-Day 60 mile walk for Team Tittsburgh in less than one week. (August 20, 21, 22)     Check out the site below for spectator information, cheering station locations, and come cheer on Team Tittsburgh and the other walker hero’s. Pray for cooler weather for that weekend. 

http://www.the3day.org/site/PageServer?pagename=TC_Spectator

Love to you all!

Jen

June 2010 Update

 Hi Everyone,

It’s been a few months since I’ve sent out an update so I thought I’d bring you up to speed on what’s been going on.

First, J.R. and I crossed off the number one thing on my bucket list this spring, a two week trip to Italy. It was fantastic! We went to Venice, Verona, Florence and Rome. It was a trip of a lifetime and was everything I expected it to be and more. Two of my favorite moments were these. Our first night in Venice was lightly raining. All the guide books tell you to “get lost”, so we did. After a few glasses of wine and trying to find our way back to our hotel we came across San Marco Square at about 11:30 when the orchestra was playing their last waltz. There was not a person in sight in the square, so J.R. grabbed my hand and we ran out into the middle of the square and danced and kissed in the rain to the last song. You can’t make it up! There were lots of moments like this throughout the trip.

My other favorite moment was an entire day out in wine country outside of Florence with our friends Jim and Sue Edberg. We were invited out to a farm for a “robust lunch” with an Italian family and friend of Jim and Sue’s. This place was right out of the story books. From the beautiful property to the hospitality of total strangers, every moment I had to stop myself from crying at how perfect the day way. We ate for about 3 hours (everything was homemade and from their land), drank longer, had great conversations even though everything had to be translated, and a nap. It was great! After their hospitality we drove through Chianti country and watched a true Tuscan sunset over vineyards and olive groves. Again, you can’t make it up! Truly one of my favorite days of all time.

Also while in Florence, the Edberg's joined us for a day of Tuscany cooking classes with our chef Paola.  The day included a tour of Florence, a behind the scenes look at the oldest geletaria in Florence, a tour and ingredient shopping at the Market, and of course the cooking classes.  We prepared our meal with the guidance of Paola and her mother, then enjoyed the feast on the sunny patio.  Another great day!

When we got home from Italy, J.R., Steph, Nicky, Zach and I walked in the mother’s day Race for the Cure that takes place every year at the Mall of America. The company I work for, Loffler Companies, was a sponsor for the race and organized a team this year. Thanks Jim!

 

Did I ever tell you that I have the greatest friends on the planet? I do and there isn’t even a close second! Late May a group or friends got together and planned a benefit / fundraiser for me. They had a silent auction, sold raffle tickets for a great patio set, sold jewelry and a whole host of other items to raise money for my bucket list fund and my charities. They raised over $7,000! Thank you to everyone who participated, donated and came to visit me for the event.  Especially thank you to those dear friends who planned the event.  Vickie, Bart, Eric, Kari, Bo, Pauly, Jill, Eddie, Mitch, Paula, Big Mike, Pam and many others. Forgive me if I do not include everyone, as so many did so much to make this such a fun night for me. I don’t know how I can ever repay your thoughtfulness and generosity. I am truly blessed. 

The Pink Limo added a nice touch at the Jen Event.

The Anderson Family:  Jessica is still in South Korea, but getting a long distance hug from Stephanie and is very much "in the picture" for all Anderson events! 

The second picture includes my sister Susan, Limo guy, me, my mom, Nicky and my Little Aunt Kathy all in from Pittsburgh and Maryland for a visit.

I’ve been training hard for the 3-Day walk again this year and have also signed up for The Hartford Breast Cancer Ride. Both events are in August; yes I’m crazy and wish someone would have talked me out of at least one of these events. My bike training isn’t going all that well. I need to get out more. I at least now have a helmet, black with hot pink. 

You’re probably wondering how treatment is going. Actually it’s going quite well. I have very few side effects, a little dizzy when I leave after the infusions, a chemical feeling in my nose which can cause the occasional nose bleed and some mouth sores. These I can handle. They doubled the Faslodex shot.  This is the one that shuts down estrogen and progesterone production in my body, so the hot flashes are coming on fast and furious again and I’m having trouble sleeping from 2:30 – 5:30 am. Not a big fan. Again, these I can handle.  But….all of this treatment has helped my tumor marker numbers drop 11 points. Yeah! So, what does this mean? Well, at this time, Dr. Bowers is not planning to change or add any new meds for a while, which means, so far, no hardcore chemo with all the nasty side effects, which makes me very happy. All in all, I have no complaints. My head is in the right place, and I am surrounded by people who love me. How bad can life be with all of you in it?

Recently I was given a book to read by my sister Suzanne called “Spiritual Fitness”. No diets in this book. J One of the things that made an impact on me was the section regarding attitude. I think I’ve had a pretty good attitude through this whole thing so I wondered what I could do different that I wasn’t already doing. And you know what? The one thing I haven’t done through this last set back was adjust my attitude back to the “I’m going to kick this thing in the ass and live!” mantra. Which kind of surprised me. So, I made the decision on my way home from Pittsburgh, somewhere over Wisconsin that I am going to beat this thing and live. Cancer is tough but I am going to be tougher. There, I said it out loud. Now my head is really in the right place.

Lastly, I had a little scare this week, after a training walk I had some pain under my right arm pit, where I had my lymph nodes removed, and I felt a small lump. So I called Dr. Bowers the next morning and she got me in to get an ultrasound and possible biopsy the morning after that. Good news, it’s nothing to be concerned with, it’s just some scar tissue from an earlier surgery. Yeah again!

So that’s it. I’ll keep plugging along with treatment and kicking cancers ass. I hope all is well with you all and that life is as good as you can imagine.

Love to you all and God bless!

Jen

Zometa, Faslodex and Avastin......Oh My!

Hi Everyone,

I’ve got another update for you. Many of you know some of this already so I will try to be brief. As you may remember, I had an MRI in January-it appeared to have “extensive bone metastasis in all of the vertebrae” but we were not sure if it was cancer or Zometa. On February 25th I had a PET and CT scan of my skull to mid thigh. We’re sure now, it’s definitely cancer.

We were fortunate to sit down with the radiologist, Dr. Bodeau, from LifeScan. Normally radiologists don’t sit with the patient to review the scans; they dictate a report and send it to your physician. But our dear friend Mary Rausch works at LifeScan and arranged for us to see Dr. Bodeau in person. He had my PET CT scan from July, which was clear except for L3 and L5, the MRI from January and the bone scan and bone survey results from December along with the recent PET CT scans.

The science part of a PET CT scan is very cool stuff. Now I know why these things cost an arm and a leg. Dr. Bodeau was very thorough in his explanation and what we were looking at. This just in, eye balls look really funny on a PET scan. On one view I was upright and spinning around, on another view we were looking at me from the top of my head and down through my body, pancreases look funny too. Then another view we were looking at me from the side, it was fascinating. I should have been a radiologist.

Here is the good news. There is no cancer in my soft tissues. Lungs, liver, spleen, adrenal glands etc. all appear normal. Those of you who gave me crap about smoking all those years, apparently I have beautiful lungs. Yes I do. You could see a faint Barcardi bat logo on my liver though. Other than that, it’s in perfect working order. I’m so pleased.

Here is the bad news. I have cancer on every bone in my body. “The skeleton demonstrates innumerable tiny sclerotic lesions throughout the visualized bones. These show intermediate to high metastatic activity which corresponds to the findings noted in the MRI scan - extensive bony metastasis.”

We focused on the spine during the meeting but I asked Dr. Bodeau if it was everywhere and he said yes. Every bone he checked looked exactly the same. Ribs, pelvis, spine, shoulders, everything.

We had a week to absorb the news from the scans before we could sit down with Dr. Bowers which was good for me because I wasn’t a mess when we met with her. She was at a breast cancer conference last week. We saw her yesterday afternoon.

So, what do we do about it all this?   In addition to the Zometa and Faslodex that I am receiving once a month, I will start a drug called Avastin. I will get this 2 times a month administered via IV. It will take about 90 minutes to infuse and has very minor side effects. High blood pressure (not worried about this, believe it or not my BP was 90 over 50 yesterday) and increased protein in the urine (hard on the kidneys).

Why? What is all of this going to do for me? Well the Zometa will keep my bones strong. I need this because as the cancer progresses it will make the bones weak. If they get weak enough they will collapse and cause paralysis. Sounds fantastic doesn’t it? My bones would be like looking at a piece of Swiss cheese. So we need the Zometa to keep doing its thing.

I receive the Faslodex to suppress the estrogen and progesterone production in my body. My type of cancer is estrogen and progesterone receptor positive so we stop the production to cut off the cancers food supply. I’ve been taking this one for 3 months now. This is the 2 minute injection in the butt I told you about. If you see me scratching myself, it’s the medication in the muscle, it makes me very itchy, but only on the left side. I don’t get it either.

And now I will add Avastin to the mix. What Avastin is designed to do is “bind to VEGF (vascular endothelial growth factor) which has been shown to be a key mediator of tumor angiogenesis”. What that means is that each tumor has its own little vascular system and the Avastin is supposed to restrict the vessels so the tumor dies off. Typically Avastin is given with chemo but since it takes 3 months to do its thing, we’re going to hold off on chemo and see if the hormone therapy and Avastin will do what chemo could do first.

Trust me on this one; I am not broken hearted to hear that we’re going to hold off on chemo. As a matter of fact, if no one ever mentions chemo to me ever again, I’ll be OK with that.

I’m sure your next question is “How are we doing?” Actually, we’re doing OK. Some days are better than others as you can imagine but in the grand scheme of things we are doing alright. The crazy thing is that I feel fine. I have some pain but it’s not unbearable. If no one told me that I had cancer I’d just think the degenerative discs in my back were getting worse and arthritis was finally setting in from the zillion car accidents I’ve been in.

I will be heading out to Aspen to ski with my Dad and Roseann this weekend and JR and I are looking forward to our trip to Italy next month with our friends Jim and Sue Edberg. I will step up my efforts to check things off from my bucket list too. I’ve got to get the real physical things crossed off sooner than later because I just don’t know how long I will feel good. I will still be training for the breast cancer 3-Day walk and The Hartford Breast Cancer Bike Ride here in Minneapolis this summer. My hope is that I will still feel good in August and be able to fully participate in these events. Dr. Bowers said the more active I am the better it will be for me.

If anyone wants to come visit us or go somewhere cool, we’re in! I’m going to spend what’s left of my life a lot like I have the first 43 years of it. Having a really good time. And for those of you who keep sending me these crazy diets and such, cut it out. As much fun as the “marijuana oil supplement” sounds, I’m not going to do it. I know it’s meant with good intentions, but this is not the time of my life to become a vegetarian or to cut out the cocktails. Send me the “eat whatever you want and drink till your heart’s content” diet please. That one sounds really great. : )

I hope this note finds you all well today. Thank you for listening to my update and for the many thoughts and prayers you send my way. I appreciate it very much. My life is better because you all are in it. Thank you for that.

Love to you all,

Jen

Already Missing 2009 - Bad Scan and MRI

Hi Everyone,

Here we go again. The cancer is back. Apparently with a vengeance. On Wednesday December 30th I went in for a bone survey and bone scan for the clinical trial I’m participating in. I had no reason to think that it would not turn out well because everything was fine in December, but as life is so apt to kick one in the ass when you’re not looking, this was not to be that time.

On Monday January 4 I was called with the news that there were some spots that showed up on my bone scan. In the past, bone scans have not shown much for me for some odd reason so three spots appearing was not good news. The scan showed lesions in T11, a spot in my clavicle / sternum area and our personal favorite, the right side of my skull a couple inches above my ear. On Tuesday when I went in for Zometa, we saw Dr. Bowers. The plan at that time was to keep me on the clinical trial and switch my hormone medication from Aromasin to Faslodex. What’s the difference? Well one is a pill, one is a monthly shot, and the biggest difference is the Faslodex is a more aggressive way to shut down the estrogen and progesterone production in my body, which feeds my cancer. By the way, the shot is in the butt and is a 2 minute injection. Fun.

I wouldn’t have been so worried about the scan results since Zometa  has been known to look like lesions while it’s healing bone. However, when I got the CA 27.29 tumor marker test results back, that changed. Last month they were in the normal ranges of 0 -35, I was a 25, and here we are 30 days later and I’m back up to a 58. So now I’m worried. On Friday January 8 I had an MRI of the cervical and thoracic vertebrae and the news was much worse than the bone scan had indicated. The results read like this:

Findings: All of the thoracic vertebral bodies demonstrate a mottled appearance. On the scout view, the cervical vertebrae also appear to be diffusely infiltrated. There appears to be diffuse infiltration of the bone marrow. This is consistent with extensive bone metastasis. This is much more extensive than what is apparent on the bone scan. No epidural tumor is identified. No cord compression is seen, the spinal cord appears normal. The central canal is normal.

Impressions: Extensive bone metastasis.  All of the vertebrae in the cervical and thoracic spines have a mottled appearance.  The pattern is consistent with extensive metastatic disease.  The bone scan underestimated the extent of disease.

So what does this mean? Well it means despite many possible variables, things aren’t looking very good. There is still a lot we don’t know. Could some of this be from Zometa activity? Yes it could. That would be a very good thing. Can the doctors tell which is which? Not at this point. We asked about a CT / PET scan and about another bone biopsy and we’re not going to do either one of those at this time. The reason they are not going to do the biopsy is that there is so much "metastatic" activity, which one would they choose? And there is a chance they could choose a spot that is Zometa related and not cancer. They know I have a new cancer occurrence, the tumor markers tell them that, so there is no reason to do a biopsy.

So what are they going to do? Well I’m coming off the trial so they can make sure I am getting Zometa every month, and keeping me on the Faslodex. In 3 months they will scan me again. In the meantime, they have a plethora of scans (bone scans, bone surveys, CT/ PETs and MRI’S) from the last 6 months to look at and compare and hopefully get more information for us.

The good news here, if you can say there is any good news, is I feel fine.  I do not feel sick and I am in no pain.  That is frustrating, because through all of this I have never felt sick until a test result, scan or blood test told me I was sick and the meds to "fix it" really made me feel sick.  On the plus side, no one mentioned chemo or radiation to me this time and that makes me very happy. If I were experiencing new pain, which I am not, then they would send me for radiation. If you are concerned about the spot in my skull, traditional treatment is Zometa and hormone therapy.  The spot on the skull is no more or less risky than any other bone occurrence on my spine.

So that’s it.  It is business as usual for the next three months when hopefully we will have enough information to determine the true breadth of the metastasis and a clear plan of attack. I will report more when I know more. If you are wondering how I’m doing otherwise, I’m doing surprisingly well. The last time I was really sad and afraid, now I’m just pissed. J.R. has been my rock, as usual, and right by my side the entire time. I don't know what I would do without him or the girls right now, they help make this unbearable situation tolerable.  I'm so blesseed to have them in my life.

I really don’t know what to expect in the short or long term but I will continue to live my life the way I want until I can’t do that anymore. I really don’t know what else to do other than fight like hell and enjoy the life I have. We will make great use of my new ski's that J.R. got me for Christmas, and we will start planning for our Italy adventure in late April - Early May.  I know many of you have been praying for us and we really appreciate that. Keep them coming please.

I hope that you are all well and that life is good for you today.

Love to you all and God Bless!

Jen

Tada does Ta-Ta's

Hi Everyone,

Here is a sentence that I would have bet would never come out of my mouth. I got new nipples today. Yup, by a gal named Tada. Can’t make it up can you? Last year about this time I had some more reconstructive surgery and I finally got to a point where I was ready to finish it all up. Who ever thought it would go on for 3 years?

I made an appointment with my plastic surgeon and scheduled time with their tattoo specialist. Believe it or not they do this right in the Dr.’s office and it took about an hour and a half. For those of you who have tattoos it was exactly what you think it would be like. For those of you who don’t have any, I’m thankful that the skin in that area is mostly numb. Today they don’t look like the final product will, apparently there is quite a bit of fading after the initial procedure. Not to gross any one out but I was told that they would look like pepperoni’s walking out the door and sure enough, they look like two pepperoni slices. But I am pleased because they cover up scars and will look fairly normal when I’m done.

To get ready for the tattooing I was told to go to a store called “Underneath It All”, and buy a pair of stick on nipples. I’ll let that sink in for a moment. Fortunately these folks work with breast cancer patients and no one was remotely shocked that I walked in and asked for them. They even gave me a glass of wine and a brownie. We love them for that!  So I tried on a couple pair and last night I put them on and was amazed at how real they looked. Who knew rubber could look so good? I should have bought these a long time ago; they sure made a difference in how I felt about what I’d been looking at for the last 3 years.

What a process huh? So these will fade a bit, need to heal and then if I want more detail I can go back again in 6 weeks and have more work done. Which I’m certain I will do.

Note from Guest Author J.R.:  Sorry guys, pictures for this blog entry are sadly not available!

On another note, I am still participating in the Zometa trial and have maintained the “stable” condition of my last report. My tumor markers are still in the normal ranges and the scans are coming back with no significant change. I will have some more scans next month for the trial, hopefully the disease will stay put.

So that’s it for me. I can’t believe how quickly this past year has gone and 2010 is right around the corner. I hope this note finds you all well and wish you and your families a Happy Holiday Season and a Happy New Year!

Love to you all,

Jen

I've Graduated

Hi Everyone,

I’ve graduated. I saw my oncologist this morning and was given some good news. First and foremost, my tumor marker test, CA 27.29, came back again at 31. That keeps me within normal ranges of 0 -35 and makes me extremely happy.

Also I’ve had a bone scan, a bone survey, PET / CT scan and MRI within the last 3 – 4 weeks. I swear all these scans are going to give me cancer. I’ve been doing these for the clinical trial that I’ve signed up for to determine the long term effects of Zometa. What did they find you ask?

Well the bone scan and bone survey came back normal. That’s not exactly what they were expecting to see. I had them compare those scans to the ones I had in October that came back “fine” when I did in fact have cancer in the bone and they came back looking the same. According to the Dr. they should have seen much more than they did, as she put it, “My bones should have been lit up from the radiation and Zometa”. None of that was present. I guess some people don’t respond to certain kinds of tests, in my case its bone scans.

So they ordered a PET / CT scan. Not a big fan of the PET / CT process but it’s OK. This is the one that I have to drink that funky cold berry flavored Elmer’s glue concoction, have an IV to receive something called Contrast and get injected with radioactive glucose. It’s quite the process. In any case, the PET / CT came back that the majority of my cancer has been “sclerosed” over. What does that mean? Well it basically means that the radiation and Zometa have developed “scar tissue” of sorts over the lesions on the spine. That’s good. There is an area on L3 that is still active with disease but not growing. That’s good too.

Based on the PET CT scan, Dr. Bowers wanted to also get an MRI to track the disease. I had that last Tuesday. They did find something of interest on S1 that they can not determine yet if it’s just something funky on my spine because my back is a total train wreck or if there may be new activity for cancer. I will have another MRI in 2 months. I had that area radiated too so who knows what’s there, this was my first MRI since radiation was done.

So I’ve graduated. I’ve graduated to a “stable” condition. I’m very happy to get to a “stable” condition, now instead of seeing my Dr. every 6 weeks I get to see her every 8 weeks. I’ll still be there 2 or 3 times a month but this is very good news for us. I will continue to take part in the Zometa clinical trial and live my life as normally as I can, because this is what we can do today.

As you know, I will be walking in the Breast Cancer 3-Day on August 21-23 and am totally ready. So far I’ve walked over 450 miles of training this summer to get ready for 60. You should see my feet, the person who gets me for the pedicure after the walk is really going to earn their tip. I’m looking forward to walking with my teammates and hopefully raising enough money to finally beat breast cancer or at least continue to arm oncologists around the world with more ammo to treat this disease. We’re hoping for great weather, no injuries, limited blisters and great stories for Team Tittsburgh. Wish us luck!

Thank you all for your time today and continued prayers for our family. I hope this finds you all well and that you’re having a great day today!

Love to you all,

Jen

24!

Hi Everyone,

Quick update for you all. I had an appointment with my oncologist last week and I have some really good news to share with you. As you know I am still being treated for metastatic breast cancer in the spine and the last scan I had after radiation and Zomata was very favorable. Well the news keeps getting better. Since I’ve finished radiation, I’ve been receiving Zometa every 3 weeks via an IV and it’s really proving to be a miracle drug for me.

Every 6 weeks I get a blood test that measures my tumor markers via the CA 27.29 test. Normal ratings are 0 -35 and when I started this whole deal again in November I was up to a 79. Last week my numbers came back with a 24, which is probably the best my numbers have been since I started this whole shin dig in 2006. What does that mean for me?

Well it means that I will continue to receive Zometa. It also means that no one is going to be rushing me into any scans in the near future to look for cancer which does not break my heart in the least. So in October I will have my normal bone scan, blood test and chest x-ray and I won’t have to do another PET CT scan until next spring. Yeah! So for the moment, it appears that we have the cancer under control in a way that I can continue to live life like a normal person. Whatever that looks like.

Next bit of news, since I am getting close to receiving 12 Zometa treatments, the recommended dosage for breast cancer patients per the FDA, I am considering taking part in a clinical trial for Zometa. There is a study in progress through oncology offices to see what the long term benefits of receiving more Zometa treatments would be beyond the recommended one year. Oncologists are having such success with this drug that they want to give it to their patients beyond 12 treatments. The FDA and Novartis, the maker of Zometa, are looking at what a monthly vs. quarterly treatment path would look like after the initial treatment has been given.

So what is in it for me? Well a couple of things. One, I would be doing something that will benefit many people down the road with this research, just the way I have benefited from those before me. Two, all of my medications, scans, blood work etc. will be paid for by Novartis instead of my insurance company. And three, I will continue to receive a drug that is doing really great things for me today. I am very excited about this study and look forward to getting started.


Lastly, most of you know that I am walking in the Breast Cancer 3-day late this summer. Most of us have met our quota for fundraising so we can train to walk 60 miles over 3 days without dropping dead. I want to thank you for your financial support of our team during these economic times. We appreciate it so very much. We’re very close to our goal of $16,300.00, we’re only $2,500 away! Whoo hoo! For those who still would like to make a donation my link is to the right of this entry. You can get to other team members who have not reached their goal there or to the Breast Cancer Bike Ride web site that our friend Kari Mitchell has started in memory of her mom. I will not be riding in that event but I will be a crew member for those who are.

We had a great weekend of college graduation activities on May 16 and 17. Nicky earned her Masters in Education from Concordia and Steph earned her BA in Political Science from the University of Minnesota. Jessica was able to join the celebration via Skype all the way from South Korea. It was a great weekend with family and friends!

So happy spring to you all, I hope this note finds you all well today. Thank you again for your love and support, I appreciate it very much. Have a great day!

Love to you all,

Jen