Wayne: from Northwestern Hospital - yes, again!

For those following my wife's blog, this is Wayne posting an update for you.

May 16th started a whole new phase of our battle. You read about the brain tumor and removing that brain tumor on May 17th. Then the following week, the doctors treated a second smaller brain tumor using radiation. The actual surgery and then radiation were a piece of cake for Maria compared to what has been going on since that time.

A few weeks ago, the pain in her shoulder and right side got much worse and her breathing was getting short. She was hospitalized and fluid was drained from the pleural cavity around her right lung. We have known that her right lung has several active breast cancer tumors. What we did not know and know now, is that more tumors formed on the pleural membrane (think of your lung as a balloon that is actually placed inside another balloon -- the pleural membrane). These new tumors are very active and are causing the builder up fluid in that cavity which presses against her lung very hard and gives that lung no where to go in order to expand.

Her first visit to the hospital regarding this fluid resulted in them draining 800ml from that cavity and there was actually 2 LITERS .. yes 2 LITERS (2000ml) there. So, they can only drain a little at a time.

That did not work well and more fluid gathered quicky and last Sunday we came back to the ER and she was in more serious condition. They got her stabilized and determined that again there was about 2 liters of fluid on her lung. She was now also feeling a lot of anxiety (naturally .. completely) because of the shortness of breath and feeling like she was not breathing.

Monday was a holiday and they could not drain fluid. Tuesday came and things worsened and they admitted her to the ICU floor where she could be watched more closely. They drained about 750ml of fluid off and this helped. The next day, they inserted a pleurex catheter into her side where we can drain the fluid as needed and try to get ahead of this fluid buildup. Her anxiety was certainly still there and this required some medication as well.

The net of this is that the fluid pushing against her lungs is a bad thing and we need to get ahead of that fluid. Her lung took a beating and with the tumors also inside her lung, the balloon quality of that lung is close to being sponge like right now and we need to have some physical therapy with her lungs to try and improve the functionality as we drain that fluid and keep it off. There is a possibility that her lung will not respond and that could present additional risk.

The end game here is to get her stronger, get her lung working much better, and then start chemo again to try and attach these tumors that are causing all of the problems right now.

So, I sit here again looking at my beautiful Maria. She is fighting hard. Right now, our focus is to get her to work on her breathing and give her lung (right lung) a chance to improve in performance. We are also fighting off a little infection in the left lung and treating that with antibiotics. Thank you all for your warm wishes, prayers, positive thoughts ... love.

I will write an update as she makes progress.

Wayne

CHEMO UPDATE

Hello All,

So I had my first chemo today at Noon and it was fine.

I'm back on Taxol without Avastin. At some point they may add Avastin back in (nice to know it is an option although the FDA pulled its approval for bc), but for now I can't have it because of my brain needing ample time to heal. I think the brain healing is pretty important so I'm good with no Avastin for now. Also, if I'm not on Avastin there won't me any nosebleeds so that's always nice.

Unfortunately, the good doctor is completely stumped when it comes to this cough. They are hoping that the Taxol will reduce the size of the tumors that they believe are causing blockage, which is causing the cough and once the tumors are shrunk a bit the cough will reduce and ultimately go away. I don't really buy into this whole thing, but I really have no choice so I will just take the Taxol and see what happens with this cough.

They have given me a new pain medication, which is in the form of a patch, which administers the medication 24/7 so we will see how that goes. They wanted to give me Oxycotin, but I refused it. I really don't need to become a head case right now (maybe down the road). The pain will either subside or I will just continue to deal with it.

If the Taxol doesn't kick the cough then I will have to see the Pulmonologist (seeing him this Thursday) again and see what other tests he can administer.

We asked the doctor about a million questions and as usual there are no definite answers. Please know that Wayne and I ask the questions.

6/20/2011
10:00am - chemo

6/27/2011
10:20am - Dr. G and Kelly / chemo

7/11/2011
11:30am - chemo

So folks that is my story. Back for a little more Taxol. Keep in mind that this whole chemo thing is a marathon not a race. I will go from treatment to breaks, back to treatments and back on breaks. The hope is ALWAYS that I will have longer breaks with minimal issues during breaks (like no back surgery, brain tumors, etc.), but chemo on then breaks is my life!!!

I hope everyone has a lovely evening. I must go now to my nephews baseball game.

Love Always,
Maria xo

Results Are In........

Hi All,

The results are in and they aren't real shocking, but better than I thought they would be.


Bone Scan -

no evidence of disease in the bone. This is wonderful news because honestly my upper back and my right arm hurt so badly that I really expected Kelly to call me and say well Maria you have a enormous tumor on your back. So these results were awesome.


CT Scan -
There is new evidence of disease in the right lower lung. The largest newness is 1.5cm, which is the only measureable tumor so the others are mere spots and can be wiped out.

There is new evidence of disease in my right chest cavity, which would be in my lymph nodes.


Now folks keep in mind that new evidence of disease when you have had a brain tumor shouldn't be a real shock. Also, I have been on a chemo break since January so really it was time to start chemo again anyway. (Oh in case anyone is wondering my head still feels good. I haven't had a headache since the morning before surgery. Also, Gamma Knife Radiation is a trip - I mean it's nuts, but it is totally something I could do a few times a year if required)

I will start chemo on Monday morning. Not sure exactly what time yet, but we will be there. Wayne and I will meet with Dr. Gradishar and Kelly and go over the "plan." Once I know more so will you.

I want to thank you all again for your outpouring of love. I appreciate all that you do. If I am a bit out pocket for awhile it's because I am back to work and really just trying to get my life back in order. I haven't been sleeping because of the back pain so some days I am holding on for dear life just trying to get to tomorrow.

Normally this is the moment I would hop on an airplane and head to Marco, but I can't fly anywhere right now and I am certainly not driving. I will just stay put and try to decompress. Lizzy and I went shopping yesterday and I blew some money - that always makes me feel better - thanks Lizzy.

So folks we are headed back to chemo, which isn't a big deal. Heck I may even be on a break and have hair coming in for Cara's wedding in October - now that would be awesome!!!

Have a great night.
Lots of love,
Maria

Life is Good!!!

Hello Folks,

What a good day. I'm happy to say that I got my stitches out today. I believe there were 17 in all and not a one of them hurt coming out. Yeah awesome nurse at Dr. Levey's office.

Katherine went with me, which was awesome. We had a great day. We went to the doctor, did a little shopping, had lunch and then went to the Chiropractor (Dr. Frank) - if anyone needs a chiropractor call me - he's AWESOME!!!!

My head feels great. My biggest issue post surgery has been my upper right back - it KILLS. So we saw Dr. Frank and well I am feeling a bit better - yeah me. I will see him again Thursday and hopefully even Friday. I really do find chiropractic awesome. I'm a believer!!!

So tomorrow is a BIG DAY. Wayne and I will head downtown for a 7:00am Gama Knife Radiation appointment. I'm looking forward to getting this appointment behind me! The whole thing should be done by 1:00pm and really they all make it sound pretty darn easy - just super time consuming and involved!

I'm looking forward to getting in and getting out. Then Thursday I will go to the pulmanologist and have a slew of breathing tests to figure out why I have been coughing for 3.5 months. Seriously, it's time they figure out why the heck I'm coughing. Figure it out and FIX IT! I will keep you posted.

Then June 6 Lizzy and I will go downtown and have a bone scan and a CT Scan and then I will know if I have to start chemo again. I'm hopeful that my lung tumors are stable and that I will continue to be on a chemo break and allow my body to continue healing from the surgery.

Surgery added yet another lovely scar to my body, but I don't really care it's just another battle scar. My niece Elle calls it a booboo and I couldn't agree more. Just a booboo, which will heal and improve with time just like all of the others.

I continue to marvel at the outpouring of love from family and friends. Thank you for everything. Thank you for your patience during the healing process.

Much love to all of you,
Maria xoxoxo

Hello All....Feeling Good and Appointment Updates

Time heals all wounds. I continue to feel better with each passing day. My family, my friends and my husband have been in a word AMAZING!!! Unreal - really. I'm so completely blessed. Cancer be damned - love concurs all.

So Tuesday, May 31 I will have my stitches taken out.

Wednesday, June 1 I will go in for gama knife radiation. While it is a long day it really doesn't sounds all that bad. Nothing better or worse than anything else.

Thursday, June 2 I will have a slew of pulmonary tests - looking most forward to this. I am sick and tired of coughing. I mean if I smoked - fine bring on a cough, but I don't so I have had it with this stupid cough. Think good thoughts.

June 4 - 5 I was originally planning on walking in the 39 mile avon walk, but shortly after surgery I decided I wouldn't, but now I'm going to walk. I'm going to walk as much as I can, but not push it. This is really just an opportunity for me to be with my friends. The last time I did this walk I was with my friend Becky. We had a good time, we laughed, we cried and well we laughed. It will always be one of my most cherished memories with Becky and it was just the two of us. I will walk next weekend and hold her in my heart. I will celebrate her life!!! Think good thoughts that I am able to walk. Love you Becky.

Monday, June 6 Lizzy and I will go for a CT Scan and Bone Scan to see what is happening in my lung. I'm hopeful that things will be stable and I will not have to start chemo again. I'm not ready to start. I need a break. My brain needs a break (literally). So when you are saying a prayer or thinking good thoughts think "no growth, no movement." I'm also gonna make Lizzy take me to lunch - I have my priorities.

Monday, June 13 I will see Dr. G and Kelly and if there are any plans to be made they will be made. If there are no plans because all is stable well then that's awesome.

Thursday, June 16 I will finally see the pulmanologist to find out what is up with my breathing, coughing issues. I'm sure it will be fine.

So those are my updates. Sorry there are so many updates, so many appointments. There is just so much happening over the next few weeks.

I'll keep you posted on the outcome of the walk. I will keep you posted on all of my appointments and the outcomes.

I'm in a really good place. Much love to you all,
Maria

Hello All I'm Back.....

Hi All,

So it's been one week since my surgery and I am feeling really good. I have to admit that this little bump in the road (actually in my head - hah - I still kill me) was a bit more frightening than other health related issues I have faced. With all of my other surgeries it was all "in a week I'll have surgery" and "I love you Mom and Dad", but this surgery was all "OMG I AM HAVING SURGERY TOMORROW - WOW." Also, keep in mind that this popped up while on my safe place.....that being Marco Island. I already told my little brother that we need to go to Marco together before the end of the year - I'm thinking an all day boat rental and some sun!!!

I am now feeling SO MUCH better. I'm happy to be in my own house, my own bed and looking forward to continued healing.

I must say that the immense outpouring of love has been overwhelming. This outpouring gives me strength and allows we to heal and to be strong. Thank you all for giving me this strength!

Love Always,
Maria xo

A Surprise: Emergency Room, Surgery, Recovering

Posted for Maria by her husband, Wayne:

In her last post, Maria was in Florida with the sunshine, enjoying a nice long walk on the beach and trying to relax after a long week in Minneapolis running her trade show/conference. Unfortunately, the rest of her week did not go well.

On Thursday, May 12th, Maria started experiencing a headache in the back (between her ears) of her head. At first this was annoying but as Thursday turned to Friday, Maria called me to say that this headache had gotten worse. Friday she was in bed all day, experience nausea if she tried to get up along with feeling very dizzy.

So, on Friday I booked a ticket to Florida to arrive early Saturday morning. Maria was scheduled to fly back on Sunday, so I booked my return flight to match hers. I got to Florida and Maria was feeling horrible. She mostly stayed in the bed, tried to eat a little and drink a little, and rest before we flew back Sunday.

Of course, as things do sometimes, more stuff happened. Early Sunday morning, like 6am, I get a call from American Airlines saying that our flight from Ft Meyers had been cancelled. We were supposed to make the short drive to Ft Meyers and leave around 11:50 and arrive in Chicago at 2pm. Instead, our only option (other than connecting flights going through La Guardia) was to drive to Miami and catch a flight at 5:40, now arriving back in Chicago at 8pm. By now, Maria's headache is even worse and she is not sure she can ride in the car to Miami, much less fly. But, it was either go to the hospital in Naples, or make that drive to Miami and fly home.

We managed to get to Miami, leaving early to allow plenty of time if we had to stop, and we waited and got on our flight ... and finally arrived in Chicago. Maria was exhausted and wanted to go home and sleep before we went to the hospital.

On Monday morning, we got up and drove to the emergency room at Northwestern Hospital. By 10am they were doing a CT scan .. by 11am we were told that her cancer had moved to her brain and there was a tumor the size of a silver dollar in the back of her head, pressing against her brain and causing all of this pain. By 1pm, the decision had been made to do surgery this week and we had already met with members of the neuro-surgery team. By 5pm we were in a room here at Northwestern and the surgery had been set for Tuesday morning at 10:30 or so.

Tuesday morning, they showed up early, flipped on the lights and announced that a cancellation had occurred and we were going to surgery NOW ... of course, in hospital time that meant go now and wait .. but oh well.

The surgery went as planned and was executed perfectly. Anything that could go wrong .. DID NOT go wrong. The tumor was removed and here we sit on Friday ... recovering ... and planning the next steps.

So, our current game plan is this: Help Maria get her strength back and continue recovery, see the radiation oncologist on June 2nd for the Gamma Knife Radiation procedure (they use targeted radiation to clean up the area where the tumor was .. to be safe that they have removed the cancer .. and to radiate another small cancer deposit on the opposite side of her head, see her normal oncologist for the plan on future chemo and further tests, and also work with the pulmonary specialist to get rid of this cough that Maria has been experiencing for several months (that cough has GOT TO GO!).

The targeted radiation is said to be effective 95% of the time in truly eliminating the cancer cells. So, we are feeling pretty confident about that process and then we can just focus on keeping this cancer in its place.

Now .. how is Maria feeling today .. right now. Well, I'm looking at my beautiful wife, sitting in her hospital bed, trying to get comfortable and get more rest. She's got this bandage on her head that comes off tomorrow, and will have a new scar for her impressive surgery scar collection, covered in a "fish" blanket from her nephew Charlie, lying close to two stuffed animals (one from Grace, her niece and godchild, and the other from Mary, another niece) ... and I still see who you all know --- beautiful, warm, tough, irresistible, unstoppable, loving, kind ... totally AWESOME ... Maria. She's a little more battered and bruised, but she is not one to give up or give in .. to anything.

She will again be posting to her blog shortly ... but I wanted to at least put something up here for those that follow her journey. Her journey has taken another turn. The battle against cancer has been raised a notch. Well .. cancer .. I'm not sure you have enough game to match up with my Maria!

As I look at her sleeping now ... I just say -- I love you Maria Francesca DiNatale Madden - you are one of a kind!

Latest Chemo Updates

Hello All,

My apologies for not updating you sooner, but there was really nothing to update. For the last several months I have been chemo free, which is AWESOME, but I have been battling a brutal cough that I just can't get rid of.....I have been to every possible doctor and so far none of them can figure it out. So I continue to cough - things could be worse.

COMMON had their Annual Meeting last week and everything went well, but it kicked my butt. I'm exhausted and for some reason I can't sleep. So while on-site I called Wayne and said I need to go to Marco...... so I am in fact on Marco enjoying the perfect Marco weather although the "Love Bugs" are out - oh well.

Monday, May 16 I will be back at Northwestern (YUCK) for some breathing tests (to deal with the coughing issue) and a CT of my chest, abdomen, pelvis and throat. Once I know the results so will you. I'm hoping for another three months free of chemo - man am I a greedy girl!!!

Anywho - for now I am enjoying Marco. The weather is perfect. There are only a few people here and instead of asking me about my hair these people are smart enough to say "love your hair", "your hair rocks" etc so I don't have to explain why I look like I'm trying to make a rock and roll statement. Gotta say the fo-hawk is totally growing on me.

Today was AWESOME. FINALLY my body did not betray me. I went for a walk on the beach and while a couple of olds still passed me I was able to walk for 1 hour and 20 minutes on the beach and I'm not in pain - YEAH BODY - FINALLY YOU LOVE ME AGAIN!!!!! Looking forward to another walk tomorrow. Trying to make sure I'm ready for the 39 miles in June - if I can walk the beach I can walk the streets easily.

So that's my story. I'm back on Marco living the good life until next Sunday. Much love to you all.

Hugs,
Maria xoxo

It's Time for a Break - YEAH BREAK!!!

Hello All,

I'm happy to announce that because my last scan was stable I have been granted a 6 - 8 week chemotherapy and Avastin break. I will be re-scanned the week of March 14. If those scans come back stable I will be granted another 6 - 8 week break.

This is the first time in two years that I don't have to be at Northwestern every week during chemo (every three weeks during breaks). While I like Northwestern and the people there I am SO excited that I don't have to be there for awhile. I am going to do my best during this break to avoid Northwestern like the plague.

We returned from Marco Island last week feeling refreshed and renewed. My hands are healing nicely and I have already kicked the need for sleeping pills. I'm so thankful to feel like myself again.

Please continue to pray for good scan results. The longer the results are stable the longer the break. The longer the break the longer I get to feel like myself and not like my alter ego "chemo Maria" - at least that's what Wayne calls her : )

Thank you for your continued prayers.
Maria

CT Scan Results

Hello All,

Well all I can say is that the doctor is pleased...

The scans are stable. There is no growth, no reduction, but no growth.

No growth is clearly a good thing, but I'm always hoping for at least a little reduction. I face the chemo, deal with the side effects and all I'm really looking for is a little (mm) bit of reduction, but NO I get stable. Again, it's better than growth.

So that's what I know for now. I'm going to talk to Kelly (Dr. G's nurse) sometime this week and see what the plan is moving forward. I'm thinking I will be given a break. My hands are in such a state that I think they are sort of demanding a break (yeah for painful hands). Once I know the plan I will let you know.

Thank you all for your continued loved and support. I think I said this in 2009, but I just thought I would remind you (remind me) that this is a marathon not a race.

Much love,
Maria

Maria Update Chemo #11 - January 2011

Hello All,

Chemo was great today. I know that may sound really weird, but it was great. They were running on time, they found my veins on the first sticks, I had acupuncture and a targeted laser treatment to helped my neuropathy, but most of all I had Lizzy.

My friend Lizzy McGovern-O'Brien took me to chemo today and again she brought props to keep my mind off the task at hand. Now I can't give you details because I'm her B/F/F and B/F/F's keep each other's secrets, but I can say that there were some old photos (Beth and Anne you two were looking good and very mature) and I can give you ONE WORD... JOURNALS.

When we were younger I never kept journals because I got really bored thinking about my feelings (plus lets be honest - I was a little lazy), but Lizzy liked a good journal and OMG am I thankful that she did.

Those journals MADE MY DAY!!!!!

(Lizzy - I simply refuse to believe that there was a time when people were beginning to dislike me - then again I can be mean - so maybe : )

At one point just after leaving chemo I was laughing so hard that I was bent over on the sidewalk with tears in my eyes. I'm sure if anyone noticed me doubled over they thought I was having some sickly chemo moment, but NO I was have a HYSTERICAL JOURNAL moment.

An AWESOME Journal moment with my AWESOME friend
Thank you, Thank you, Thank you!!!


CT Scan Update
My CT Scan is scheduled for Saturday, January 22 at 10:15am.

Vacation Update
Headed to Marco Island on January 24 for a little post chemo R&R. I'm there for a bit by myself (yeah me) and then Wayne will join me (yeah Wayne).

When I receive scan results I will make sure they are posted. I figure if the results aren't great - it's always better to get bad news on the beach. If the results are great - I will be buying frozen drinks for all of my new friends on the beach.

Plus, I got very lucky because my brother-in-law Ed will be on Marco Monday night and he invited me to dinner. Thankfully, if my scan results aren't great I will not be alone because the coolest brother-in-law ever will be by my side and well if they are great we will celebrate. Either way I win!!!

Folks we are praying for great scan results and a long chemo break. I would like to give my hair the opportunity to grow in and my nails the opportunity to heal.

Oh and if you have old journals around your house from childhood - have a friend over, read the journals and give yourself a good laugh!!! Laughter is the BEST (medicine)

Have a great night!
Maria

Christmas Eve / Christmas Update

Hello All,

Since I posted earlier that I love Christmas Eve and Christmas I thought I would fill you in on the outcome of those good times. Christmas Eve and Christmas did not disappoint. The food, wine, conversations, laughter and love were plentiful.

Christmas Eve was out of control. It was a riot. 60+ people including 18 children under 12.....WOW!!! Santa made a special appearance and I must say I wish I were a kid again. A ridiculous amount of candy, coins and toys were distributed to the kids. My Mom said she is hoping that Santa shows up next year with "bracelets and rings". I have some close ties to our Santa so I will be calling him.

Christmas gave me the opportunity to talk to two of my favorite "Greats". My Great Uncle Nello and my Great Auntie Mary. I love having the opportunity to spend time with the Greats. They both have a very special place in my heart!!!

Christmas Eve can be summed up by saying, "Lovin the fam."
Christmas can be summed up by saying, "AWESOME Ravs and Great GREATS."

I must share one sad/humorous detail about Christmas Eve/Christmas. My husband was sick with a terrible flu. He missed everything. Did you hear me? He missed everything! I was NOT pleased. In fact I still can't believe that he was the sick one and that he missed everything. I was very sad.

His flu unfortunately led me to a 102 degree fever on Tuesday, December 28 and put me in the hospital one night. It also led my in-laws to a series of strong antibiotic shots. Wayne and I rang in the New Year sittong on the couch taking a strong amount of TamiFlu. Happy New Year to all!!!

Christmas Eve and Christmas were absolutely wonderful, however, I missed Wayne.

Lots of love,
Maria