Wednesday, December 19, 2012

                                              My Gift


I received my Christmas gift last Friday and couldn’t wait to tell you about it. I was so excited when I received it. It wasn’t expensive jewelry or the newest electronics or fancy clothes that I don’t really need. No, it wasn’t a trip to an exotic place or a gift certificate to an upscale restaurant. Give up (I’m running out of adjectives)?????? What I received was a day (a full day at that) where I felt like my old self.

Mark and I took the day off and planned a whole day and evening downtown (OK truth be told I did the planning but he went along with it), I was a little concerned considering I just had chemo two days before but was ready to attempt it. We arrived downtown at approximately 11:30AM and proceeded to go all day and evening (with a small break back at the hotel to rest and change for the evening) doing all the things we use to do. We must have walked a several miles that day and didn’t arrive back to the hotel until midnight. It was great to be able to visit all the places we use to go (4th Presbyterian Church, 95th Signature Room for lunch, Water Tower and all the shops in between) and the evening was spent at the Christkindlmarket, The Goodman Theater to see A Christmas Carol and dinner afterward at Petterino’s.

What I have learned from this experience is not to take anything for granted, even the simplest of tasks. What seems easy today may not be as achievable tomorrow. Experience as much as you can while you are able and savor those memories. A lot of us have the attitude of “it can wait until I retire”. Hopefully we all will have that opportunity and be healthy enough to enjoy it, but things change so quickly. Take the time to enjoy life a little bit at a time so your not looking back thinking – I wish I had…..

I truly received a great gift this year. Even though it wasn’t flashy or fancy or expensive it fit perfectly.

I wish you all a very Merry Christmas and a Happy and Healthy New Year.

Put on those fancy Christmas shoes and Keep On Dancin’

Monday, December 10, 2012

                          It’s NOT Beginning to Look A Lot Like Christmas

It’s hard to believe Christmas is right around the corner. I know it’s on the way because of the Christmas specials on TV, the bright Christmas lights on homes at night, the crowded malls and the Christmas music playing on every other radio station.

But it just doesn’t feel like Christmas. I think I lost the spirit somewhere over the past few years. What use to be my favorite time of the year with the music, the decorating, cookies, holiday parties, cookies, Christmas shopping and wrapping gifts (did I mention cookies?) is now a big blur like I’m standing still and everything is happening around me. What happened to that old feeling of excitement and anticipation?

As positive as I try to stay I must admit Christmas to me now is a time to stop and reflect. Is this my last Christmas or will there be more to celebrate? I guess there are no guarantees in life and anyone can ask the same question. However, for me it’s more a reality. There’s no Ghost of Christmas Future to take me by the hand, fly me through the sky and show me what the future is bringing. I have to admit it’s kind of lonely and scary at the same time wondering what the next year will bring.

With that said, I will put on a smile, participate in the usual Christmas activities, try to capture some of the past and try not to think about the future - at least not now.

I wish you all a very Merry Christmas and a Healthy and Prosperous New Year!

With visions of sugar plums dancing in you head remember to slow down and enjoy the holiday. It will be over before you know it.

Keep On Dancin’

Friday, November 16, 2012

Next week is going to be a flurry of motion and I wanted to take a moment to wish each and everyone of you a HAPPY THANKSGIVING!  

This is the time of the year that we all reflect on the past year and think of all the things we are grateful for in our lives.  Although if I had a choice of going through this journey I wouldn't take it, it still has instilled in me how fortunate I am to have so many friends and family who care about me.  It has taught me to "stop and smell the roses" instead of rushing through my days to get to the next one.  I have learned I am NOT invincible and need to take better care of myself.  I now know that waiting until a tomorrow that may never come is not always a good idea.  I have learned to dance and be a participant in my life instead of a bystander.

So as you sit at the dinner table on Thursday and bow your head in thanks, remember that every day should be a day of Thanksgiving and not celebrated only once a year.

Thank you once again for your love, friendship and words of encouragement and especially for reading my scribbles which has become my therapy.

Keep On Dancin'

Friday, November 9, 2012

I often have people approach me and say “My mother/father/sister/brother/friend, etc. was just diagnosed with cancer and I don’t know what to say. What should I do?” Seems like a simple question but with the experience I have with both with my mother and myself I have witnessed things I thought I would never see.


Most importantly be supportive both in words and actions. Let the person know you’re there for them. The hardest time is when you first get the news. Until it sinks in and you get all the information your imagination is running wild. You’re scared and mad at the same time. It’s comforting to know there are those around you who are there for you but it should be on your (the diagnosed) terms. What I mean (and everyone if different) is that some people just want time alone to reflect and gather the strength they are going to need to get through this ordeal. A simple message of I’m here if you need me in the first few weeks is better then a full on attack of being there 24/7. Ask if there is anything they need (i.e. ride to the doctor for support) but back down and don’t feel hurt if they say no. Remember the day before they got the news they were fully functional so wanting to take over tasks such as shopping, cleaning house, cooking, etc. should be put on the back burner until or if it’s needed.

Another no-no is to give unsolicited advice and comments. At this time they don’t want to know or care about your friend Julie’s aunt’s best friend’s cousin who was diagnosed and what they went through. Don’t be overly positive since know one at this time knows what is going on and until you do telling someone they are strong and will beat this with no problem are just words.

Once a plan of action is decided whether it be surgery, chemotherapy, radiation or a combination slowly ease back into their lives asking if there is anything you can do to make things easier for them. If you’re close enough to them you should be able to read them to know if you’re going in the right direction and when to back off. Some people, like myself, may not want to lose their drive to move forward and may not want any help at all. This is their way of coping by living their lives as normal as possible. Others may need a large support group to help them cope. Just remember that just because someone may not need help doesn’t mean they want to be cut off completely. Just make things as normal as possible and dwell on the positive and not the negatives.

Occasional phone calls (remember we have caller ID and if we don’t want to talk we won’t pick up) and greeting cards are always welcome. I still have every single card and note that has been sent to me from my first diagnosis ten years ago as well as those sent in the past two and a half years. When I feel down I look through my cards and they remind me of all the wonderful friends I have out there.

Listen when they want to talk. Stay positive in your comments. They are putting a lot of trust into their team of Doctors and Nurses and the last thing they want to hear is unsolicited negative opinions on why you might think the course of treatments they are on isn’t right because your friend Julie’s aunt’s best friend’s cousin’s Doctors did something different. A large part of getting well is mental attitude and the belief that the Doctor has the experience and knowledge to get you through this. If they simply do not want to talk about it, don’t. Sometimes you just want to forget about what’s going on and have a conversation about anything but your situation. Remember we live with this 24/7 and a little diversion is a good thing.

Lastly – cancer is NOT contagious. It will not bring you bad luck if you associate with someone who has it. I saw my mother as well as myself lose life long friends who couldn’t deal with it. Well how do you think we feel??? We don’t want to deal with it either but we don’t have a choice. I actually had a good friend who said he couldn’t bear hearing or reading about what was going on and still to this day calls another friend for updates. He simply just disappeared from my life. He has lost two and a half years so far that can never be gotten back.

Bottom line – you should know the person and have a pretty good feel for their needs. Using common sense is your best tool. I hope this insight helps in some small way.

Keep On Dancin’

Friday, November 2, 2012

Although I knew I was cleared for chemo on Wednesday I still sat on the edge of the seat until they actually stuck the needle in and started the infusion. It’s been such a crazy six weeks that I was ready for another road block to be put in front of me. Fortunately everything went as planned and I received the chemo.


I did get a call today from the liver specialist letting me know that the test came back confirming I have Gilbert’s Syndrome. His words - “so what”! He said everything else looks good and besides the cancer, my liver looks good.

Also received a call from my doctors nurse letting me know about the results. I asked what does this mean for the study. They have to go back to the head of the trial and submit my results and supposedly get new range for my bili count. She said she would let me know as soon as she heard something. I’m not going to let my guard down until I know everything is set. So I’ll continue with my bland and tasteless diet. Like I told my doctor yesterday – if it doesn’t look appealing and tastes like crap it must be good for you!

I’m still trying to decide whether I should have gallbladder surgery. Dr F said it’s up to me and shouldn’t affect my chemo schedule since I have 3 weeks in between. I just don’t feel comfortable with them poking around near my liver (gallbladder is directly under your liver). I guess I have to think about this for a while before I make up my mind.

Otherwise things are fine. I feel a lot more tired and achy after this treatment. I’m sure my body was getting use to being chemo free and then was hit with a double whammy this week (I also had my bone treatment).

Thanks to all of you for your support and words of encouragement while I was going through this fiasco.

Keep On Dancin’

Tuesday, October 30, 2012

It’s been a stressful couple of weeks to say the least. The saga of my bilirubum count continues. Since my last treatment on September 25th my bilirubin levels have been going up and down. When my total is down my direct is up and vise versa. A sure sign of Gilbert’s Syndrome. Should be interesting when the test comes back ( in approx 4-6 weeks) to see if it’s confirmed that I have this condition.


This week’s blood test came in right at the cutoff so I’m cleared for chemo tomorrow. I’ll also see the doctor and need to get some things clarified with this trial. The way it was explained to me last week that even if I have Gilberts, it would have needed to been documented BEFORE I started on the trial. Considering only 6% have this condition (and until now I never heard of it) who would have thought to test for it. Doesn’t sound logical but when did medicine and logic ever cross paths. Odds are that getting both numbers in line to meet the requirement are not good. So you’re probably wondering why this hadn’t come up in the past – well because until recently I was only tested for the Bilirubin Total and not the Direct.

My doctor did share with me that she thought this trial drug was going to be released soon so hopefully we can hang on until then. My good friend Vicki who is also an Oncologist also suggested that I may want to apply for “compassionate care” with the trial which basically lets them give it to me but the data will not be used for the trial.

Stayed tuned for part three of this never ending tale.

Until then – Keep On Dancin’

Wednesday, October 24, 2012

Another big disappointment today as I received a call telling me no chemo again this week.


Yesterday morning was spent seeing the liver specialist. After reviewing my records and examining me he declared that he see’s no evidence of liver disease (besides the cancer). It is his opinion that I may have Gilbert’s Syndrome which affects 6% of the population. Basically it’s a non-fatal genetic condition that causes a higher then normal bilirubin level. This was also my doctor’s opinion when I spoke to her last week. I had blood drawn to confirm this diagnosis. In the mean time because my level is higher then normal until this is confirmed or the level drops I cannot continue with the trial chemo.

To say I’m disappointed, stressed, mad, etc is putting it mildly. I now have not had chemo for 5 weeks which makes me worried that all the good it has done in the last 9 months is being reversed. For someone like me who takes the bull by the horns I feel helpless because there’s nothing I could do except wait.

Not much else to report and to be honest I’m so frustrated I don’t even feel like writing.

Until I know more….

Keep on Dancin’

Thursday, October 18, 2012

Why is nothing easy?  All I want is some normality back in my life.  I guess I gave that up 2.5 years ago when this all started.

No chemo yesterday.  It seems my bilirubin levels were up and I didn't have the energy to argue.  If you remember from my post last month I had the same problem.  For those not familiar with what bilirubin is here is some info:

Bilirubin (formerly referred to as hematoidin) is the yellow breakdown product of normal heme catabolism. Heme is found in hemoglobin, a principal component of red blood cells. Bilirubin is excreted in bile and urine, and elevated levels may indicate certain diseases. It is responsible for the yellow color of bruises, the yellow color of urine (via its reduced breakdown product, urobilin), the brown color of feces (via its conversion to stercobilin), and the yellow discoloration in jaundice.

In a nut shell high bilirubin can be an indication of liver damage.

The doctor called me this morning to see how I was ( I think she was more interested in how I was doing mentally rather then physically since she knows I hate changes in my schedule).  Although she said I just may have a higher level then most, she still needs to be safe and have it checked out.  I have an appointment Tuesday with a Liver Specialist to get a second opinion. 

I did share my thoughts on it and thankfully she is open minded and listened to what I had to say.  Three weeks ago when my level showed high I did a little research on how to reduce the levels.  Basically lots of fruits and veggies, orange juice, low fat meats and no fired or spicy foods.  Very similar to a diet you would see for gallbladder problems which makes sense since the liver and gallbladder work together.  In less then one week of sticking to this diet my level went from 2.3 to 1.8.   The second week it went down to 1.7.  The third week I got lazy and didn't follow it like I should have and it shot up to 2.4.   I have a blood test scheduled for Monday.  I plan on sticking to this regiment and hopefully it will show a reduction.  My doctor was very open minded to the idea so we'll see what happens next week.

A bit of good news is that the CT scan I had on Tuesday showed stable - no change.

Until I have more to share I remain strong, positive and ready to fight.

Keep on Dancin'

Friday, September 28, 2012

Thinking Outside the Box


Over the years medicine has somehow become “for-profit” and the days of the “non-profit” hospitals have fallen to the wayside. You see more and more administrators vs. actual caregivers (i.e. doctors and nurses). So it’s amazing to me that although they have embraced the business-way of thinking and wanting to see the bottom line increase, they haven’t quite caught on to the common sense approach to looking at things. In medicine I am finding that it’s either black or white. There is no room for gray or even multi-color thinking.

Case in point – I arrived for my chemo appointment on Wednesday and checked in as usual. I was to see the doctor first and then go over for chemo afterward. Because my chemo is an experimental drug it is not mixed in the Cancer Center Pharmacy. It is done in another U of C pharmacy dedicated to research a few blocks away. Due to the cost of the drug (my guess is +$50,000 per treatment) they will not call in the order until I physically show up. I have learned to speed up things I go over to the Infusion area and let them know I’m there and seeing the doctor first otherwise I could wait and have waited up to 2.5 hours and a 2:00 appointment turns into a 4:30 appointment. When I checked in I was told the doctor cleared my for chemo based on the blood work that was done the day before and faxed to her that morning.

Because U of C is a teaching hospital and my doctor is a Professor of Medicine and Director of Medical Oncology she routinely has Residence and Fellows working with her. (A Fellow is a doctor who is pursing a specialized field). As I wait to see my doctor one of the Fellows working with her comes in and starts explaining my blood results. Not that I’m a brain surgeon but after a while you get familiar with what things mean and the terminology so I engage her in a conversation on what she is telling me. Unfortunately she takes this as a threat instead of a well informed patient who has taken charge of her medical treatment and now has to assert herself even more. She points out my Bilirubin is high of which I reply it has been as high in the past. Her reply - “well maybe you shouldn’t have chemo today, I’ll talk to Dr. F”.

After a few minutes my doctor walks in (a little sheepishly) and says that the Bilirubin is a concern and she needs to check protocol for the trial. So they both leave and a little while later the Fellow comes and announces they aren’t going to do the treatment today and I should come back next week to make sure everything is normal. OK, I admit that now I’m mad and tell the Fellow that I don’t have time to waste by coming back next week. I think she was a little taken back and didn’t know what to say so she said she would get my doctor to come back and talk to me. My first question was why, when they had the blood test at 8AM that morning and Infusion has told me I was cleared for chemo was there a change in their thinking. Of course there was no good reasoning and a lot of dancing around the question.

OK – here’s where the theme of this weeks blog comes into play. What I failed to mention that the other numbers measuring liver function (and was calculated into the Bilirubin count) showed being normal or slightly out of range. Nothing stood out as being a problem. So using my business/engineering background I had to ask why didn’t they re-run the test in case the data was incorrect. To me this is a “no brainer”. The response was that it took 2 hours to get the lab to process blood samples (yes – a major hospital takes 2 hours to run blood work which is why I have the test done offsite the day before). My response back was I’d rather wait 2 hours then to come back the following week. So it was agreed that I would have another blood draw to confirm the results.

After the draw I went back to the infusion area to wait for the results. Thanks to one of the nurses, Susan, who I’ve known the whole time I’ve been going she kept calling the lab to get the results STAT. The next I know they are calling me into the Infusion area because “surprise” my test results have improved.

There of course is a lot more to this story. Why did my doctor change her view from looking at the results in the morning until I saw her at 1:30? My guess is that she knows me (and my medical history) and although the count was higher then normal knew I could tolerate the treatment. Because the Fellow questioned it my doctor had no choice then to follow protocol.

Even though this whole situation was very frustrating I still can’t comprehend why the first thought would have been to re-run the test rather then send me home. Medical professionals no matter how much they want to turn medicine into a business still cannot understand thinking outside the box.

The good part of all of this was it gave me material for the blog.

Here’s hoping that some day intelligence and common sense will meet.

Keep on Dancin’

Wednesday, September 12, 2012

I'm sorry I haven't posted anything sooner but between not feeling good and being super busy I haven't had a chance to gather my thoughts.

I had my CT Scan last week Tuesday.  Imagine my surprise when the CT Tech told my I was "famous" within their department due to the last scan I had and the exploding IV (see posting around Aug 16 for more details).  Seems they had a big department meeting and changed IV protocol due the little mishap.  Glad I'm famous for something.  CT scan went without a hitch and I was in and out in 30 minutes.

Chemo was the next day.  I have to admit I nervously sat waiting for the doctor and the results trying to keep a brave face.  Imagine my relief when the doctor told me that the tumors in my liver, lung and chest area showed shrinking.  It had stayed stable for the last several months and I was happy with that.  I had thought that maybe the chemo had met it's match and was just holding off the enemy.  Remember stable is good.  I'm never going to complain about stable.  But shrinking is better - buys me more time.  As I said before, although relieved and happy I don't get too excited since I know how fast things could change and knock you off that high.  Let's just all put on our party shoes and do a quiet little happy dance and then back down to business,

Unfortunately they forgot to schedule an ECHO and I have to go back Monday to have it done.

Otherwise I've been tired and have had flu like symptoms which may be due to the Xgeva they give me for the bones.

Until I have more to tell you - enjoy the end of summer before we ave to trade in our flip flops for Uggs!

Keep on Dancin'

Friday, August 31, 2012

It's hard to explain how I feel as a CT scan is nearing.  Even after 2+ years of this I still feel a little anxious not knowing what the outcome will be.  Let's face it, this is my future so it's hard to shrug off as "another test".  I try to stay positive and confident.  Keeping busy is my best friend.  No time to think about it.

Keep your fingers crossed.  Tuesday is the test and I see the doctor and have chemo on Wednesday.  All I could do is hope for the best.

I try to remember:

Until I have more news, have a great holiday weekend!

Keep on Dancin'


Monday, August 27, 2012

It's been a crazy few weeks.  As many of you know we had our 9th Annual Golf Outing to raise money for breast cancer,  After losing Y-Me in July we selected Gilda's Club as our beneficiary, 

We couldn't have asked for a better day.  Weather was beautiful and course was in good condition.  We had a record 125 participants this year and raised over $10,000,

I'd like to thank all our family and friends for coming out and being a part of the day.  We couldn't do it without all your support.

Special thanks to my volunteers who kept things moving - Carol Lucht, Wendy Shahrikian, Roxanne Klingenmeyer, Cheryl Balncas, Mary Ann Zurawski, Kathy Huro, Courtney Huro, Megan Huro, Kevin Michelini, Jamie Hezja, Cindy Michelini, Jamie Michelini and Karen McAra.

Hard to believe it's over.  We are already looking forward to our 10th next year. 

Health wise things have been quiet which is good.  Next week I have a CT scan on Tuesday and chemo on Wednesday.  Let's keep those positive vibes going.

Until I know more next week.....   Keep on Dancin'

Monday, August 6, 2012

Keep on Dancin'

Monday, July 30, 2012

I must have a bulls eye on my back.. No really, I just can’t go for a routine test without something happening. This past Tuesday I had my normal 6 week CT Scan to see what was going on inside. As usual I had the first appointment 8AM. For some strange reason which no one still can explain they want you there an hour before. So we arrived at 6:45AM ready to go. At 7AM the tech called me in to get ready. So far so good. IV went in with no issues and I was really getting excited that maybe for once I would get in and out with no problem. With a CT Scan they put your through once to make sure you are lined up correctly and then start the contrast (which is a glucose solution that has a radioactive additive to allow them to see the pictures better) before taking the final scan. The tech came out and started the contrast and BOOM – either the tube was faulty and split or the connection was right because the next thing I know I have this sticky slimy goo all over my hair, face, arm, etc. The only thing I could do is start laughing while the tech was horrified that this happened and was running around getting me washcloths, etc to get the mess cleaned up. Bottom line by the time everything was fixed and reset it was an hour later. So much for thinking it was going to be an uneventful morning!


Good news is that the test results came back showing no change. Although I want to her the word “shrunk”, stable is good. No complaints here. Next test September 4.

Until next time……

Keep on Dancin’

Monday, July 23, 2012

              Is Dying From Cancer a Curse or a Blessing???


OK – I see the eyes rolling and all you wondering if the radiation to my brain finally kicked in. Before you have me committed let me explain……

As you all know I do a lot of driving/sitting in traffic every day so it gives me a lot of time to think.  So one day I got to thinking... Let’s face it, we all are going to die from something whether we like it or not. So is it easier to know in advance or just have a heart attack with no warning? The heart attack is probably an easier less stressful way to go while cancer just drags on and on always on your mind not knowing when it’s going to take you.

Heart Attack – 1 Cancer – 0

Then there’s the theory (well at least my theory) that with a heart attack you have no time to prepare. No final wishes (lets face it, as much as we think about it does anyone really write down how they want to go out? Who gets what? Say what’s really on your mind?). With cancer you have time to plan out your last wishes (yes I am controlling in life but I’ll be more controlling in death), give those last minute instructions, etc.

Heart Attack – 1 Cancer – 1

But how many knowing their time may be up sooner than later really take advantage of what they have left? That’s the hard part because you don’t want to come off negative looking like you’re giving up. To me it’s just being practical. I have so many friends I’ve made in my life who have shared both the good and bad that I want to make sure they know how important they have been to me (plus lets face it, who wants to be forgotten). It’s easy to write down the big stuff and where it should go, but it’s the little things that may not look like anything but have great meaning. Those are the things I want to make sure get into the right hands. So what’s the difference if I give them away now or ten years from now? It’s not being negative, to me it’s practical. It’s assurance that it won’t be overlooked or thrown away and gets to the person who understands the significance of it.

The second thing you need to do is write down who gets what in order to avoid any problems for whoever has to take care of your final wishes. If it’s your wishes no one should argue about it and you won’t put that person in an awkward position. You should include who you want to do certain things (i.e. there’s only a few people I want pawing through my clothes, etc) and who you would like to do it.

Finally, if you have any last minutes wishes on the service make sure everyone knows in advance. Don’t write that down because it may not be read until after the funeral. I’m lucky to have an expert funeral planner in the family (1-800-kevinmm). Favorite song, favorite verse, make sure it’s known upfront.

I guess what I’m trying to stress is that none of us know what tomorrow brings. Don’t wait until it’s too late.

As far as Cancer vs. Heart Attack it’s a tie. It’s all up to you on how you handle it.

Until another great thought races through my brain…….

Keep on Dancin’

Tuesday, July 17, 2012

It’s been a sad week. On Thursday, July 12, 2012 Y-Me closed its door due to a serious cash flow and lack of funding. Most of you are aware that Y-Me has been around for over 30 years providing support to breast cancer patients and their caregivers. It’s an organization that was born in the Chicago area and grew nationwide. I became connected to Y-Me back in 2002 when I was first diagnosed with breast cancer. I was looking for a place to “give back” to since I was lucky enough to have a great support system from my family and friends. My first volunteer assignment was as a greeter for their annual Fashion Show and Luncheon. From there, because I was writing for magazines at that time I helped write articles for their quarterly newsletter. That somehow gave me enough exposure to be asked to chair a committee for the fashion show the following year. From there I was asked to serve on the Board of Directors until suddenly the Chicago affiliate office was closed. All along the annual golf outing we organized donated all the proceeds which in 8 years totaled over $60,000. Now, poof, it’s all gone - a victim of the economy. What still stands is the memories and all the wonderful people I have met over the last ten years. It was like a special club, a sisterhood that only we knew what the other was going through because we had all gone through it ourselves. Yes, it’s been a sad week.


But as we all know things change and life goes on. So what’s next? For our golf outing we have researched and have chosen Gilda’s Club as our beneficiary. Gilda’s Club was started when Gilda Radner (of the Saturday Night Live fame) died from ovarian cancer and her husband (comedian Gene Wilder) started a place where women could go and find support. The first club opened in NYC in 1995 with Chicago’s club opening in 1998. Originally started as a support group for those with ovarian cancer, Gilda’s Club now welcomes men, women and children with any form of cancer. Of course our main focus will still be breast cancer it’s nice to have an organization that supports other cancers since many of our family members have died from other forms.

As the saying goes….”as one door closes, another door opens”. We look forward to a long relationship with Gilda’s Club and wish the best to our friends at Y-Me as well as the women they were helping.

Keep on Dancin’ my friends

Tuesday, June 26, 2012

Words of wisdom from my niece Megan:

Just keep on dancin'!!!!!!

Tuesday, June 19, 2012

Sorry for not updating you all sooner but as usual time is just flying by.


You all were aware that I had a CT Scan and ECHO on June 12. Pretty routine you would think but if have read any of my adventures in the past nothing is routine. Arrived at 6:45AM for an 8:00AM appointment (for some unexplained reason which no one could explain intelligently you must be there 1 hour before your appointment). The waiting game began. Supervisor Dave (who I have a hard time picking on since he really is a nice man) proceeded to tell me that there was a mix up with my orders and they couldn’t get hold of anyone until after 8:00 – WRONG! Not being one known for patience I proceeded to have the nurse who set up the test paged. She wasn’t at work yet but did call me back and asked to talk to Dave. Since she was new she did in fact have my orders mixed up and advised Dave what the right test was suppose to be. Unfortunately all orders must go through the Bozoputer and I had to wait until she arrived to make the corrections. Not a good way to start off the day! When I was done with the CT Scan it was off to have the ECHO done. Finally got out of the hospital at 10:30 – long morning.

Later that afternoon I received a call from my doctors office saying that she was going to be very busy the next day and asked if I would mind seeing one of her Residents ( must be part of her training strategy – have them see me and if they don’t go running they are a keeper) so I wouldn’t have to wait. I “jokingly” said to the scheduler that I was expecting test results and didn’t want any bad news coming from anyone but my doctor. In the mean time I remembered I added a Thyroid test to my blood work to make sure the meds I am taking were working right. They were so I gave her the results and asked for a new script so I could stay on the existing dosage. She emailed back no problem and added that she had the results of my scan and it came back stable and added “which seems good to me!!” Now those who know me pretty well know how competitive I am especially with myself. I always have to do better. Practical side of the brain is screaming that this is good and I should remember the times when it went the other way and I wanted stable. However the impractical side is disappointed that I didn’t have a small decrease in size. All and all I am happy that it hasn’t grown. I get to go through this in another 6 weeks (July 24).

The next day we were back to the hospital for the doctors appointment and chemo. Sat over an hour waiting to be called to see the Resident. Because the chemo I am on is a trial drug they will not start formulating it until I physically arrive to Infusion. This chemo is not made in the Infusion Pharmacy but in a facility outside the hospital so we also have to wait for it to be delivered. I have waited up to 2.5 hours from the time checking in until it was ready. Because of this I proceeded to Infusion to check in. It is pretty routine that when the doctor is running late they come to Infusion to see you. Well the Resident must have gotten forewarning about me (LOL) because she never showed up. From the Infusion waiting room you could hear them call out the names to see the doctors and I was never called. I must have fallen through the cracks.

As I relay these stories to you I laugh thinking the University of Chicago is ranked number 2 (they try harder) in the city. I hate to see what goes on in those ranked well below them. My opinion is that the hospital is ranked based on the excellent care and knowledge of the Doctors and Nurses and they do not take into consideration everything else that happens around that place.

Hoping your enjoying the hot weather that has come upon us. Remember to wear sunscreen when your out!!!

Just put on those flip flops and Keep on Dancin’!

Monday, June 4, 2012

There was an Oncology Conference in Chicago last week and the hot topic was the trial chemo I am taking!

Experimental drug offers new way to battle certain breast cancer


By Miriam Falco, CNN

updated 5:36 AM EDT, Mon June 4, 2012

Chicago (CNN) -- Doctors who treat breast cancer patients are very excited about an experimental drug that presents a whole new way of knocking out cancer cells.

The drug, trastuzumab emtansine, commonly referred to as T-DM1, appears to be superior to the standard treatment for women with advanced HER2-positive breast cancer. Researchers are presenting the results of a large three-year clinical trial Sunday at the 2012 American Society of Clinical Oncology conference in Chicago.

It's a combination of the targeted drug trastuzumab (the "T" in T-DM1), better known by the brand name Herceptin, and a very powerful chemotherapy drug called emtansine (the "DM1" part). The drug is designed to work when Herceptin alone no longer can keep the cancer in check.

New drugs may help immune system fight cancer

"It's a brand new way of treating HER2-positive breast cancer," said the lead study author, Dr. Kimberly Blackwell. "This will offer a very important therapeutic option for patients faced with HER2-positive metastatic breast cancer."

In this combination drug, Herceptin is delivering the chemo drug to the cancer cell. Blackwell likens it to being used like a carrier pigeon that delivers the DM1 drug, which is what kills the cancer cell.

DM-1 is too toxic to deliver directly into the bloodstream like other chemotherapy drugs. So the Herceptin part of T-DM1 homes in on the cancer cells (sparing other healthy cells) and delivers the powerful DM1 chemo drug into the cell.

About 20% to 25% of women with breast cancer have HER2-positive breast cancer, a particularly aggressive and deadly form of the disease that was very difficult to treat until the FDA approved Herceptin in 1998, revolutionizing how this type of cancer was treated.

Herceptin is an engineered antibody that attaches to the surface of the cancer cell and blocks signals in the cell that tell the cancer to grow. It also boosts the patient's immune system to help fight the cancer.

But in some patients, the cancer comes back, and Herceptin eventually stops working. That's when doctors prescribe a combination of the drugs capecitabine (brand name Xeloda) and lapatinib (brand name Tykerb), which has had its successes.

In this clinical trial, nearly 1,000 patients were divided into two groups: One got the standard capecitabine plus lapatinib treatment; the other group got the experimental drug.

Women getting T-DM1 had 9.6 months of progression-free survival, the time between starting the treatment and the cancer getting worse again, compared with 6.4 months in the standard therapy group. That's a median improvement of three months.

This may not seem like a long time, but as Dr. Eric Winer of the Dana-Farber Cancer Institute in Boston explains, it means a lot to the individual patient.

"I've had patients on this drug for one, two, three years," he explained. Winer says that if a patient gets an additional three months before the tumors start growing again each time she goes through a treatment cycle, that can add up to almost a year.

Some doctors don't know long-term side effects of cancer care

Blackwell says that after two years, 65% of women getting T-DM1 were still alive, compared with 48% in the control group.

And even though this drug is not a cure, many oncologists call these trial results a "huge deal."

That's because another significant benefit with T-DM1 was the lack of significant side effects and better quality of life. Women on T-DM1 did not suffer the usual and often grueling chemotherapy side effects seen in the other group: diarrhea, nausea, vomiting, painful hand-foot syndrome and hair loss. Blackwell said the types of side effects they did have were the kind only a doctor would notice.

"It really changed their whole outlook on what it meant to be on cancer treatment," said Blackwell, who treats patients at Duke University. She added that seeing this benefit for her patients was incredibly rewarding as a breast cancer doctor. This is the first group of (breast cancer) patients where we have to worry about fixing their hair for media interviews. It's huge deal for these patients."

"It's producing very promising results, and as someone who sees a ton of patients, what I'm really excited about is the side effect profile," said Dr. Jennifer Litton, who treats breast cancer patients at the M.D. Anderson Cancer Center in Houston but who was not involved in the study. "It's significantly better than most chemotherapy drugs that we're giving.

"This trial is showing pretty impressive results on the tip of the iceberg where immune therapy can take us," Litton said.

Dr. Louis Weiner, director of Georgetown University's Lombardi Comprehensive Cancer Center, agrees, calling T-DM1 a "magic bullet."

"It represents the fruition of a concept that was advocated more than 100 years ago by Paul Ehrlich, the famous immunologist and Nobel Prize winner, who dreamed of creating basically Trojan horses that would be welcomed into the cell but would be dragging something that is very bad for the cell. This is pretty much how T-DM1 works," he said.

"It's a good drug. I think it will be used quite a bit," Winer said.

Right now, only women participating in the clinical trial have access to this new drug, until it gets approved in the United States and other countries.

Genentech, the company that developed T-DM1, says an application for potential approval will be sent to the FDA and the European counterpart, the European Medicine Agence, this year.

It's unclear how much this new drug will cost, but other new cancer drugs can be very expensive, costing upwards of tens of thousands of dollars, sometime even around $100,000.

"I hope it won't be priced at such a level that it that bankrupts our health care system," Winer said.

Tuesday, May 29, 2012

                       What’s on Your Bucket List????


A few weeks ago I finally had the chance and energy to take some time off so we headed down to our timeshare in West Palm Beach, Florida. Since we were flying in and out of Miami I finally had the opportunity to meet a friend that I have talked to, emailed and FaceBooked with for almost 15 years. Gary is a very talented (he made me say that) reporter who use to interview me (when I was someone) on the economic conditions both in the US and offshore for his articles. We talked for years but never had the opportunity to meet with him living in NYC and me in Chicago. Gary now lives between NYC, the Catskills and Miami so we finally had the opportunity to meet in person at his beautiful condo on Miami Beach. We got together several times during the week and I mentioned to him (kiddingly) that I was finally able to cross him off my bucket list. Well that statement got me to thinking – what really is a bucket list? I know the term has gotten more popular since the movie came out several years ago. I not only see it used for those in their advanced stages of life (i.e. seniors) but for critically ill children who’s lives are being cut short from a terrible disease.

So I asked myself, what’s on my bucket list? What do I really want to do or accomplish before the final curtain call?? That’s a really hard question to answer. As you might remember from my posting a few weeks back about regrets, I really don’t have any. I’m pretty content with my life up to this point. But you must be thinking there has to be something I really want to do or accomplish. I’d like to win the lottery but since I don’t play I guess that’s not going to happen. I would have loved to travel to South Africa to see the animals in the wild but it wouldn’t make the top ten list. Wow – I’m actually sitting here and can’t think of a single thing that I would put on a bucket list. So I have to ask myself why? I’ve always been ambitious and gone after things. Not only have I made goals every year for my professional life, but for my personal life. I have been lucky enough to do what I wanted, when I wanted to do it. In other words I have DANCED. I haven’t looked at life from the outside in but actively participated in it. I have enjoyed what life brings and what I have brought to it.

So once again I ask you all to “DANCE”. As the song says, "don’t just sit it out, just dance! Don’t wait until it’s too late.

Keep on Dancin’ my friends!

Thursday, May 24, 2012

Just want to keep you updated on what has been happening.  Yesterday was chemo day.  Saw the doctor first and everything seems to be going smoothly.  I say that cautiously since I know how fast things can change.  Saw her Resident first and I managed not to harass him too much since he had only 3 weeks left in his residency and was leaving to go to Cornell to go into cardiology,  I did bite my tongue wanting to ask him who dressed him!  He obviously is not married or has a serious girlfriend because he was wearing a yellow and blue check shirt and a grey and silver striped tie.  AAARRRR

Chemo was a different story.  I had three different nurses trying to insert my IV.  I was well hydrated so I'm not sure why there was a problem.  I think the first nurse (who I love to pieces) didn't have enough confidence.  IV's aren't one of her strengths.  The second one was a (sorry) "smart ass" who rushed the second stick, gave up and decided the third should go into my wrist.  Now I have had IV's in the same area of my wrist many times with no problem.  Again she rushed things and hit a nerve.  Mark said he never saw me jump so high.  It was the worst feeling I've ever experienced.  Like an electrical shock going through my thumb.  It still hurts today and my thumb is stiff.  I will NEVER allow anyone to go near this area again.  I still get nauseous thinking about it.  The third nurse had no issues at all.  Looked at my arm and got it in with no problem.  In the mean time I looked like a porcupine.  I just know I'm going to be uptight next time I need an IV. 

As a side note, the service I go through to write this blog shows stats on how many times my blog is read by day, week, month and year.  I decided to check it out and imagine my surprise to find that since I started this May 10, 2010 my blog has been read 4,378 times or an average of 182 times a month!  I'm not sure who all of you are but I hope in some small way my experiences mixed with humor mixed with me getting on my soapbox is helping in some small way. 

And you thought I was having fun on Wednesday afternoons!

Until I have something more profound to write.......

Keep on Dancin"

Friday, May 4, 2012

Another long week.  You would think that after going through this for 2 years that you would get use to it - NOT! 

Tuesday morning we were at the hospital at 6:30AM for the CT scan.  I won't bore you with the all the details but once again I have to ask how a first class world renowned hospital like the U of C could be so screwed up when it comes to schedules, etc.  Arrived as asked to at 6:30AM (I was the first appt) and didn't get called until 8:15AM.  Then even though my doctor had ordered the CT scan with IV contrast only they proceeded to tell me they wanted me to drink the IV contrast also.  I explained and showed them the order from the doc that it was IV contrast only because I had problems in the past with the oral contrast and they just looked at each other not knowing what to do.  I calmly (yeah - right) suggested they call either the doctor or her nurse to get it straightened out.  Not sure what happened but I did get the scan as ordered by the doctor.

Of course from then until Wednesday when I saw the doctor it was a little stressful.  I know the last scan was good but you never want to take anything for granted since things can change quickly.  Turns out the results were good.  Continued reduction in all areas especially the large tumor in the liver (went from 4.8 x 4.9 cm down to 4.0 x 4.5 cm).   My right lung did show fluid but they were not too concerned due to the good results and the fact that I've had this head cold.  So 6 more weeks of chemo until the next scan.

Not much else to report.  I continue to fight this head cold/cough.   They think it may be a reaction to the chemo so it's a wait and see.

Thanks to all of you for your thoughts and prayers.  It really helps me get through these tests.

Until there is more to report - Keep on Dancin'!!!!

Friday, April 27, 2012

“Regrets – I’ve Had a Few  ~  But Then Again, Too Few to Mention”


They say as you stare death in the face your life flashes in front of you. I don’t believe it! What I think happens to all of us whether we have an unfavorable diagnosis or just as we enter into the senior aspect of life we take account of what has occurred over the years. It’s a gradual process of remembering life from the time you were a small child until now as you remember the good times as well as the not so good times.

I know in my case I have replayed “highlights” of my life in my head lately and have wondered if there was anything I would have done differently and what the outcome of those changes would be as I sit here today.

Starting with childhood I have to say I had a great time growing up. Summers playing all day with my friends whether it was in the little kiddy pool we had in the yard, baseball in the alley, sitting on the stairs in the evening with friends, reading every book I could get my hands on from the library, swimming at the pool with friends, going to the lake with family and friends for picnics, fishing with my dad, hiking through the woods with my dad (which really was the forest preserve) and all the other summertime activities. We never went on big flashy vacations but managed to get away the 2nd week of August to Wisconsin to the lake or a resort.

Winters were spent going to school, ice skating at the park (one year mom even put a rink in the yard), sledding, building igloos, great holidays with family and friends (playing hangman on the paper tablecloth), doing arts and crafts and just being a kid with no pressures beyond making it to the next grade!

No - No Regrets here!

As I got older and through college I started my first “real” job at Marshall Fields. I met different people, developed friendships, did all the things you do at that age including going to clubs and bars, dancing and drinking all night (and getting up and going to work the next day), I caught the travel bug and started traveling to places from Las Vegas to Australia by myself because I had to see what was beyond my little world in Chicago. I re-met my husband Mark (we lived a block apart and went to the same grammar school), got married and continued our love of travel.

No – No Regrets here either!

By this time I started working for a company where I stayed 20 years, met and made so many friends I still talk to today, continued my love of travel, was mentored by a great man (Thanks Ray!) who pushed me to be my best and sent me to China to learn before it was the thing to do. That opportunity allowed me to be recruited by another company where I managed facilities in Mexico and China and continued to learn. This allowed me to be able to write for several magazines, be interviewed for major publications, teach seminars and eventually start my own business.

I’ve run marathons, participated in triathlons and have led a full and happy life.

No – No Regrets here!

As time continued I was once again recruited for another great company where I am today. - working with friends who are like family members. Of course with what I have been through the last 2 years my love of travel has been put on hold but I’m OK with that.

As you can see I have so much to be grateful for and not much in the regret area. I have a wonderful family, fantastic friends all over the world and although my health isn’t where I’d like it to be I’ve been lucky enough to wake up every morning so far.

So I’m sure by now your thinking OK, but there has to be something in your life you regret. Sure, the passing of my mom when I was 33 was hard. I wish I was a little closer to my two nieces (Courtney and Megan). But besides being diagnosed with this cancer I can’t really think of anything I would change. I am content with the life I built and am living. I am at peace with where I am and who I am today.

So, Regrets – maybe a few, but too few to mention.  I DID IT MY WAY!

My advice to you is to be happy with who you are and what you have accomplished in life. If you’re not happy with something change it now – don’t wait until it’s too late.


Keep on Dancin’ my Friends

Wednesday, April 18, 2012

It's been a crazy week and a half. Chemo was a fiasco but I did manage to keep my cool. Saw the doctor for a quick check up - not much to report except the next CT Scan is May 1. Went over to IV Infusion and checked in about an hour early. For once the doctor was on time and we didn't have a lot of rushing from one appointment to another. Waited for over 2.5 hours before I was called. Seemed the Pharmacist mixed my chemo wrong (all chemo is mixed especially for the patient based on weight, etc before the treatment) and it had to be re-done. Thankfully they have checks and balances to catch these things but in the mean time we sat. By that time it was after 4:00PM and there was hardly anyone left. All of a sudden to our right a women who was with a chemo patient went straight as a board and started shaking. She was having a seizure. I never saw so many doctors and personal move to an area so quickly. Without exaggerating there had to be at least 20 people attending to her. Within 15 minutes they had her stabilized, on a stretcher and on the way down to ER. I guess if something like that was going to happen it happened in the right place.

More waiting (turns out because my chemo is a trial drug it's made in a Pharmacy in another building). They finally hooked me up about 5:00PM. Like I said all and all I was pretty calm through the whole wait. I must be mellowing.

The next morning I woke up with a full blown head cold including cough and congestion. It seems like after every treatment on this new chemo I've come down with something. All I could think of it that it's driving down my immune system and what ever is floating out there I am catching. The rest of the week and weekend was miserable. I spent the whole weekend in my PJ's. I felt better Monday but can't seem to loose the cough. I also developed laryngitis and haven't been able to talk for three days. Plus my right eye is bloodshot and sensitive to light. BUT, I did wake up this morning so I'm not complaining. I actually feel great and able to work and get around. It's just a little hard to communicate. Of course everyone thinks it's funny that I can't talk. Don't know what they are implying!

I'm hoping I'll be back to normal by the end of the week so I have a week and a half of feeling good before I have to go back.

As you could see there is always some excitement going on in my life. I live for the days of boredom!

Until I can shake this virus I think I'm keeping the old Dancin' slippers next to the bed.

Keep on Dancin' my friends!

Tuesday, April 3, 2012

What a week it has been. As I last posted I got good news. The news still stays the same, however I had another "Attack of the Gall Bladder" (coming to a movie theater in your neighborhood). For those of you who have been following this you will remember in September and November of 2010 these attacks actually landed me in the hospital for an extended time. This one started Tuesday during the night but didn't escalate until 1AM Wednesday. I did get up and managed to get to work (looking like hell) and made it until 11 AM. After consulting with the doctors it was decided that I come in for evaluation and fluids. So right to the hospital where they did an evaluation, gave me those oh-so important painkiller drugs (diudid is my best friend) and hooked my up to an IV. After a couple hours I felt groggy but better and they sent me home with more diudid pills.

Thursday I tried my darnest but just couldn't get out of bed. Another call to the doctor got me sent back to the hospital for an ultra sound. back home and to bed. Still not being able to eat anything but a clear diet (jello, juice, Popsicles, broth). I did try eating a piece of banana (a great accomplishment for me since I'm not a fan of the big yellow guys) and it no sooner went down when it came back up including bile (not my favorite shade of green). The day was a total waste. Could hardly function with the drugs.

Friday I got up feeling a little better and went into work trying to salvage the week. I made it until 11AM and left otherwise I wasn't going to make it home. Surgeon called to let me know he looked at the ultra sound and it wasn't my gall bladder. I told him I had this same pain at least 5 time before and know what it is when the pain goes into my back when he stops me to tell me that gall bladder doesn't have back pain. Now, I've had this problem for 8 years and everyone I talk to about it all have a common link. They all talk about the back pain. But what do I know - I'm only the patient. From there on the rest of the weekend is a blurr. Don't remember much of anything.

Saturday I think I may have over medicated myself. It was a strange day. Seemed like everything was being repeated. Every time Mark would in and say something I would think "didn't he say the same thing 20 minutes ago"? At one point I took my pain pills only to think (once swallowed) - "didn't I just take these"? Long story short Mark took the pills away and would only give them to me when needed. Probably a smart thing. Sorry to cousin Carol who called right in the middle of an episode of "Doreen the Dummy". I'm sure I wasn't making any sense at all. At least I have drugs to blame it on!

Started back working full time again on Monday and made it through the day. I feel fine - just more tired then usual but it will take me another week to get back to my old normal.

Until more to report - I have my Dancin' slippers on.

Keep on Dancin'

Friday, March 23, 2012

To say it's been a long week in an understatement. Tuesday was test day at the hospital. We were there by 7:30 for the CT scan. Once again they made me consume about 2 quarts of a contrast for the scan in an hour. Then they put you on a table hooked up the IV pump with all this fluid bouncing around inside you. I must have used the facilities at least 8 times (and I am not exaggerating) from the time I left CT until I went up for my ECHO. I spent to whole day going back and forth the bathroom. I'm hoping on my next scan we could skip the fluids.

Wednesday was chemo day and I was to see the doctor before to get the results. As you could imagine I was a little up tight and nervous waiting. When we were in the exam room there was a knock on the door and in walks frick and frack (fellow and resident). Ok - they weren't that bad but I was a little taken back since my doctor always comes in and wasn't expecting a change. I gave them a little bit of a hard time since I really wanted to hear the news from Dr. Flemming since this has been a journey for both of us. Hindsight should have told me if it was bad news she would have come in herself (at least I hope so). Turns out the trial chemo was been working. The largest lesion (tumor) in my liver had grown to 8cm (3.15") and after two treatments had shrunk to 5cm (1.97") which is a 32% reduction. The activity in my lymph glands which had cancer cells now show clean. After I heard this all I could hear was blah blah blah - blah blah blah. I was so relieved I didn't hear much of anything else except that everything else looked stable with no growth. Hallelujah!!

Although I am very pleased and excited with this much progress in just two treatments I am trying to stay even keeled since I know how fast things can change. I'm not trying to be negative, just guarded. My next scan is May 1 so I hope this continues to work. Let's all keep positive thoughts. Not only is this great news for me but for the trial and all the women who hopefully will be helped by this new drug.

After that there isn't much else to say. I'll keep you informed as things move along. For now I'm just going to enjoy the moment.

Thanks again to all of you for your kind words, thoughts and prayers. It is what is keeping me positive and moving forward.

Until next time - I have my Dancin' shoes on and doing a jig!

Keep on Dancin' my friends!

Tuesday, March 13, 2012

It's been two weeks since my last treatment and I'm still feeling good. I still have a head cold/ allergies but do not think it is a result of the chemo except for the fact that my resistance is down and it's probably easier for the cold to progress. The only thing I've noticed is that my fingers seem more sensitive to touch. Not Neuropathy (pain and tingling) just weird. Hard to describe but whatever it is I can live with it.

CT scan is a week from today. I'm a little nervous since if it doesn't show it's working I'm not sure what's left. I have read good things about this trial drug.

Here's some of what is out there:

Oncologists don't like the term "miracle drug," and try not to use it -- but the word miracle was in fact used when researchers presented results of a Phase II trial of T-DM1 at the Breast Cancer Symposium in San Antonio, Texas.

It is called Herceptin TDM-1. Like a “heat- seeking missile” the chemo rides the Herceptin only to the mutated cells, and “blows them up.” This is a first of its kind, revolutionary drug. Some oncologists have described it as “a potential home run.”

Her2 Breast Cancer patients suffer from one of the most aggressive breast cancers. Herceptin T DM-1 is a revolutionary drug that has shown great results.It has been successfully tested in humans for over 4 years. Yet last Sept. 1, 2010 this FDA decided to block approval, and run more trials , until 2013 ! The drug it is being tested against has been shown already to have many more side effects to the patient and a lower quality of life. Why are they making Stage 4 patients wait, and suffer more ??? Please sign a petition at www.signon.org/sign/fda-blocks-life-saving.fb1?r_by=1178671

I did notice my good friend Denise Mair has already signed it before I even saw it online. Thanks Denise!

I hope to have some good news next week. As always I am very guarded and tend not to get to hopeful or excited until I have results. Please think good thoughts and say a prayer this is working.

Love to you all - Keep on Dancin'

Doreen

Monday, March 5, 2012

Just wanted to update you all since my treatment last week. Once again right after the treatment I came down with a terrible head cold. I was in bed all weekend with a bad headache, sinus pain and all stuffed up. Because my head hurt so bad I didn't have an appetite which made me nauseous, etc, etc. Spent most of the night (and day) in the recliner (I did notice that sleeping in the recliner prevents bed head so that's a good thing!). Feeling better today but tired from not getting a good rest. My best guess is that the chemo drops my resistance way down and I'm more susceptible to germs and viruses. This is the second month this has happened so we will see what happens after then next treatment. Thankfully Mark was around and helped me get through this.

As bad as I felt this weekend if this chemo is working I could go through things that are 100 time worse. Hopefully we will have good results after my CT Scan on March 20.

This new trial chemo I am on is called Hercepton DM-1 (I'd like to think the "DM" was named after me). I did some research on it and what I read seems positive. All I (we) could do is keep on moving forward and hope for the best!

Until I have more news I'll have my Dancin' slippers on for a few more days!

Thursday, March 1, 2012

Hard to believe February is already over. Time has been flying by so quickly before we know it the 4th of July will be upon us. In a way I'm glad to see the dreary winter months pass by us quickly but in truth I want to savor each minute of each day not knowing what the future brings.

Chemo yesterday went well except I'm there longer due to Trial Study Protocol and the staff having to do take extra steps (i.e. waiting 30 minutes once I take my pre-meds before starting and having to stay 30 minutes after the chemo to watch for adverse reactions). Makes for a long day. Got there yesterday at 1:00 PM and didn't leave until 6:00 PM. My blood work came back with a perfect score. It looked better then most of the "healthy" people on staff. Liver enzymes are where they are suppose to be. Of course the one side of my brain is happy since it mean no problems in getting my treatment but the other side of the brain asks "is it working" since I haven't had any reactions. I have a CT Scan on March 20 so I guess that will tell the story.

I was bored yesterday so I took a picture of my IV. I was lucky to get Nurse Helene who not only is a super sticker but has the sweetest personality as most of the nurses in IV Therapy. You have to be a special person to deal with what they see day after day.

I was so happy to wake up this morning with no issues. The last few weeks I've been fighting a head cold which turned into an inner ear infection. I spent one day sitting upright in a chair with my eyes closed because my ear infection caused vertigo and every time I opened my eyes I felt as if I drank a couple bottles of wine. I couldn't focus and the room just kept spinning. Thankfully "Uncle Perry" came to the rescue and picked up a couple of prescriptions for me (Valium being one of them) which eventually stopped the vertigo. The one thing I have noticed is my immune system goes down after chemo and I have to be careful to stay away from crowds and people who are sick otherwise I pick up the germs pretty quickly. Of course I hate sitting still so instead of resting and taking it easy I keep going which usually lands me on my butt.

I wanted to thank all of you who continue to send me notes, cards, etc to keep my spirits up. They make me laugh and smile - especially all the references to Dancin"!

Until next time - I wish you all happiness and good health.

Keep on Dancin' ~ Doreen

Monday, February 13, 2012

Chemo on Wednesday was interesting - what I remember of it. Arrived to the hospital at 7:30 to check in and get prepared. Because this involves a study I now have my own nurse who just draws my blood and puts the IV in place. Once I was ready to go they ran saline for about 30 minutes before I was ready to start. Unfortunately they have to give the IV form of Benedryl in case of any allergic reaction. Benedryl make you drowsy and basically puts you out. In my case it also give me jumpy leg syndrome. Imagine laying there and not being able to stop moving your legs. AAARRRRR! Fortunately they have a drug they were able to give me that stopped it after a while. The chemo went for about 2 hours and then they watched me for an additional two hours to make sure there were no adverse reactions. During the time the chemo was being given they took blood samples several times to check liver function and platelet counts. I was good throughout the infusion and tolerated it well. As part of the study I also had to answer a questionnaire via computer on how I felt, etc which they gave me after I had the Benedryl so who knows what I put down! LOL All and all it was a pretty uneventful day. We finally got out of there about 2:30 and it was R&R for the rest of the evening.

The next morning I woke up with a terrible head cold. We thought at first it may have been a reaction to the chemo but it turned out the be a good old fashion cold. It basically knocked my on my butt all weekend. Thank goodness my super sister-in-law Cindy came to the rescue during the snow storm with DayQuil and NightQuil along with good old fashion chicken soup and crackers. It was the only thing I took that relieved the pressure. Feeling better today except for some fatigue.

Next treatment is scheduled for February 29. Hopefully it will be smooth as this one was.

Until I have more news......Keep on Dancin'!!

Tuesday, Februrary 7, 2012

Just wanted to keep you updated. I received a call from the hospital earlier this afternoon. They wanted me to know that I qualified for the trial and the computer picked me to receive the trial chemo as opposed to the standard protocol drugs. I have to be at the hospital tomorrow morning at 8AM to start. Since this is the first time I will be receiving this chemo they need to monitor me close to make sure I have no adverse reactions. Before, during and after the infusion I will have blood drawn to check platelets, etc. I also need to have Benedryl (the strong one that makes you goofy - they put it right in the IV) in case of any allergic reactions. I also need to be monitored for several hours after the infusion for any reactions. I'm a little nervous since I will be entering a new frontier that hopefully will help women in the future. I've been looking to find some good out of all of this and maybe this is it. Let's keep our fingers crossed. I'll keep you all updated as I go through this new adventure.

Until then I'll have my dancin' slippers on tomorrow. Keep me in your thoughts!

Remember to KEEP ON DANCIN' my friends!

Wednesday, February 1, 2012

Happy Birthday to me! Made yet another year. I for one look forward to birthdays and that number increasing only because it means I'm still with all of you. It's hard to get bummed about getting older when your wish is to get older. Hard to explain what goes through your mind. I've had so many good wishes today and I am truly blessed to have so many friends. Thank you all.

One more week until I start the new chemo. The hospital has pulled my tumor block and its on the way to Germany so they can confirm I qualify for the study. This week I have a Bone Scan, CT Scan (abdomen) and more Lab work to do in preparation. The best I could hope for is that this trial will buy more time. If anything hopefully it will help others down the road. I have to be thankful to all the women who in the past were on trials for the current chemo's I have taken over that last 21 months. Without patients agreeing to be in these studies we wouldn't have the variety of hopes we currently have in the form of chemo. There is still a chance that I will be accepted on the study but not get the trial drug. I have a 2 out of 3 chance of being picked (by a computer and most of you know my relationships with computers are not the best) to have the trial drug. If I'm not selected I will be given an FDA approved drug that my physician feels is the best for me at this stage. The study will compare those taking the trial drug versus those on a regular course of treatment. Either way it should prove to be interesting. I'll take you step by step along the way as I start this new journey. We could only hope it helps. We have to start somewhere.

Well I have on my birthday shoes and will continue to DANCE the night away.

Until next time - be happy, healthy and keep on dancin'!

Friday, January 27, 2012

Three steps forward one step back. It seems like a reoccurring scenario. Wednesday didn't go as good as we wanted it. The new chemo has not been effective and the tumors have grown and spread. At least we found out only after 8 weeks of the chemo rather then going months. To be honest I anticipated this mostly due to the fact that I've been feeling like my old self since switching to it. Hands and feet back to normal. Appetite back and energy level up. The topper was that my blood work came back the best its been in well over a year. Everything to normal. The new chemo just wasn't strong enough. The only saving grace is that I needed to have this chemo in order to qualify for the trial drug study. So Wednesday afternoon I ran around the hospital having lab work and an EKG done. Thursday morning I was back bright and early for an ECHO (heart study) and CT Brain Scan. Next week I'm scheduled for a CT Scan of my pelvis (this is the 3rd CT scan in a week - you would think they would get everything done at once), bone scan and more labs. I'm tentatively set up to start the trial chemo on Feb 8. All they need to do is to re-evaluate my tumor block. They actually keep the tumors removed from you, in this case from 9 years ago, in what they call a tumor block (wax like substance). the hospital is required to keep it in storage basically forever. In this case it will be sent to Germany (drug company sponsoring the trial is Rosch which is a German Pharmaceutical company) to verify that the cancer I have is the one they are studying in the trial. I am confident that this will not be a problem since the tumor has been evaluated by both RUSH and U of C hospitals once before. Good news is that the drug company pays for a lot of the tests and drugs. Once I get more into the thick of it I will let you know what is involved. Until then I just keep on going with a positive attitude and the fight continues.

Stay tuned for more updates and don't forget to Keep on Dancin"!

Tuesday, January 17, 2012

Happy New Year! Hard to believe that we are starting a new year already. The holidays just flew by with great times with both family and friends. It's times like these that make me even more determined to fight this beast. Luckily the new chemo I started 6 weeks ago has had minimal side effects. Besides fatigue the worst has been a weakening of the tendons/muscles in my right ankle which at times makes it difficult and painful to walk. This is a side effect of one of the medications I am required to take for the trial study. Besides that I feel good and have had more noticeable energy. I have a CT scan on January 24 and hopefully it will show that this new chemo cocktail is working. I can handle the ankle if the scan shows that this chemo is working. Lets keep our fingers crossed.

I've never been too much into new years resolutions. I've always tried to set goals for myself (thanks to my years at Bussmann and having to do yearly professional goals - thanks Ray!) and given myself time to achieve them no matter what time of the year. However, this year I am challenging myself to do something that will make a positive impact. Whether its volunteering or just leading by example I'm not quite sure what it will be but I'm hoping I have enough energy this year to accomplish it. I am hoping that some day my ramblings here in this blog will be able to help someone see sunshine at the end of the tunnel. That being dealt a bad hand doesn't have to result in having to stop your life in its tracks but to live each day to its fullest. I would rather have one meaningful year of living then two years of being miserable.

I hope all of you have started the new year on a good foot and that 2012 will bring great things to all of our lives.

Until I have more news later this month, put on those dancin' boots, run out in the snow and just KEEP ON DANCIN'!