Thursday, July 07, 2011

Gearing Up for Another Miracle--Help Needed!

After a few weeks of dizziness, balance issues, mild headaches and right side body numbness, my oncologist ordered a brain MRI "just to be sure". All these things could be explained, after all, as long term side effects of the T-DM1.

Unfortunately, the medication is not causing these things. Rather, it is the 15 or so roughly centimeter-sized metastatic tumors that were uncovered in my brain today. Yikes.

After a brief freak out, I sensibly made use of my anti-anxiety medication. Turns out that stuff really works for major anxiety (it was actually prescribed to me for chemo-related nausea and that is what I nearly always take it for, so I was delighted at its effect on my very raw nerves). 30 minutes later I had regained control of myself and was ready to speak with my doctor to figure out what this all means for me.

There is no doubt this is a very unfortunate and major setback for me. Nonetheless, the cancer is completely controlled in my liver and bones right now, and this is a very good thing. Because of this, they can focus on treating the brain aggressively right now without worrying about more than maintenance for the rest of my body because nothing there is on fire. Thank goodness.

So, the treatment plan? First of all, I need lots and lots of prayers. Please kick them up, especially through the intercession of Bishop Don Alvaro if you are Catholic (or even if you aren't but are so inclined). I do believe he obtained for me my first amazing healing of the liver which remains clean even now, so I'm sure he can do a heck of a job with the brain! Prayers are what give me peace and the strength to face this with all I've got, so I thank you for them, in whatever form you care to pray them, from the bottom of my heart. I am specifically asking for COMPLETE HEALING. Oh, and prayers for my family would be appreciated as well please, as this is very difficult for them.

I am officially off the TDM1 trial now, but so love that drug that did so well for me for so long. It did its job beautifully but never had a chance in the brain because of its molecular weight. So, we are switching to a new chemo tomorrow. This one is called Tykerb, is for Her2+ cancers, and does cross the blood brain barrier. Those suckers aren't going to know what hit them in a few days. This chemo is in pill form and does not require a port infusion. I am guaranteed to have tummy troubles with this one, but we'll take it one day at a time with that. I will also have Herceptin infused every three weeks to maintain the disease outside of the brain. That one is no big deal. Very similar to the drug I have been on all this time, just a little milder.

In an amazing, and I mean truly amazing, flurry of activity I began the radiation portion of the show today. Same day as diagnosis, can you believe it? It often takes weeks to get started but my wonderful oncologist made a phone call and pled my case with the rad onc and he saw me within 20 minutes and I was actually receiving treatment a few hours later. I did not know it was possible for radiation oncology to move that fast and am so grateful that I was already able to attack this rather than wait seemingly incessantly for treatment to begin.

I will be having 20 treatments of Whole Brain Radiation (WBR). Every business day for 4 weeks. I will have these in Mission Hills so at least I don't have to go all the way into UCLA. I cannot drive for now, so I will need lots of help from lots of people, most of whom don't even know yet that they will be called on. Sorry! But if I've learned anything from all of this, it is that I need help. Humbling, to be sure.

WBR is an intensely fatiguing experience I am told, and this will last for several months after treatment. I have been advised by my doctor to accept all the help I can with the children during this time, as I will have no desire to remove myself from the couch. Hmmm...we'll see how that works out, but a nice thought! I may have some short term cognitive processing problems, so please bear with me if I can't remember what I was talking about or have a hard time finding a word. I am likely to continue to be off balance for awhile as well. But all this should get better over time.

I will be losing my hair in about a week. It may grow back and it may not. The plan is to cut it super short this week so I have less gobbing off. Maybe I'll look like Halle Berry. Or maybe I won't.

I am now on a fairly powerful steroid called Decadron to control the swelling in my brain. This should significantly reduce my numbness and headaches in a few days. That's the good news. The bad news is that I am virtually guaranteed to become an emotional wreck overnight. You may want to avoid me for the next few months. (Unless you want to see what I look like bald, of course!)

I am truly sorry to report such dreary news and pray that all of you who read this will adopt the cheerful and positive attitude that I must maintain to see this through. Lurking under this sunny outlook, however, is enough fire in my belly to attack this, so don't worry that I am going to turn into a passive little flower. I am mad at this sneaky, rotten disease, and I want it out of my body. Now. All of it. ESPECIALLY out of my brain, for goodness sake.

Thank you for your prayers, your kind thoughts, your patience with me and the help that always comes when I need it. I am blessed in family and community and wouldn't trade that for anything.

29 comments:

Anonymous said...

I am one who never prays on daily or go mass every Sunday. But I will start saying daily pray for you and your family. What your fighting is not easy but I faith you will win.

Kerry said...

praying praying praying praying

Anonymous said...

I already check in on your blog daily, I will now pray hard daily for your complete recovery. I will also pray for peace and strength for you as you go through the process. I don't know you, but wish I was closer so I could help in some way. I read your blog because I find it very inspiring witnessing your process of learning to live with both fear and trust. Thinking of you, Mel.

Emily Aoun said...

Oh Suzanne! Yet again, no words! I will do everything in my power to help you with whatever you need! You name it, I will be there!! In the meantime...prayers, prayers and more prayers from the Aouns!!

Anonymous said...

Since you've responded so well to T-DM1 when agent is able to reach cancer, would your oncologist be willing to administer some of this medication via intrathecal method, by possible use of an ommaya reservoir to bypass blood-brain barrier obstacle?

Witness to Hope said...

The mystical body of Christ is praying for you. May you be assured of the love of Christ in your current situation and know that we are with you in your suffering. May His Divine Hand heal you through the intercession of the Saints in Heaven.

"Mayor" Yogi Allaire said...

Fire in my belly for you and healing TOTAL and COMPLETE healing for you, and annihilation of all cancer cells- no cancer, tumors gone. That is my directive, those are my prayers. I am mad, angry, crazy, loco cuckoo to get rid of that CANCER. Go away Cancer! Be gone from lovely Suzanne's body. It kind of sounds dramatic and extreme and like an exorcism, but so be it. Extreme measures, extreme PRAYERS FOR YOU MY DEAR, DEAR BEAUTIFUL (yes bald too) SUZANNE. Let me know how I can help. Love and light, wellness and cancer free to thee, "Mayor" Allaire and Chloe too in Lake Hughes

Anonymous said...

Suzanne my thoughts and prayers are with you in your continuing battle. Know that you are fighting the good fight. Your family around you is the best medicine and the medical attention sounds very on top of it and quick to action. All good. The hand of God on you and yours for complete healing!!!

Janet said...

When you run, you run with the Lord. I will pray all day for you. I am soooo inspired by your strength, God Bless you! Janet :)

nicole said...

I'm sorry for this setback. I will be praying for you.

Anonymous said...

"ALL things work together for good for those who love the Lord"

I am asking our dear Lord that we may all, in our own way be a Simon of Cyrene with you. No matter what, there is profound blessing and election here. You are scaling the mountain, enduring the thorns and being allowed to experience the darkness that even Jesus himself endured..."My God, My God! Why..." But in these dark moments you have that faith, even if by sheer will. It is yours.
I have read that Bl. Teresa of Calcutta was not a visionary like many other saints, but at the beginning of her journey into the slums, she had a vision of Our Lady, loving and ministering to an immense crowd of the poor who were enveloped in darkness. From the moment Teresa united herself to our Lady,in this vision, she too took on the darkness of these poor people. Every moment that you feel the bitterness of this disease, and the darkness of its treachery, venture out in spirit into the world, and pick up all of the souls, languishing in the gutters of faithlessness in this world. Souls who don't possess your pearl of great price.
Just like the remedy for snake venom is the venom itself, your struggle with cancer, united to His bitter passion is a remedy to our world which is plunged in darkness.
Offer, offer, offer...
And now to put that distinguished gentleman Don Alvaro on the SPOT!!!

Anonymous said...

Oh, Suz, I am saddened by the news, but very optimistic that you can beat this! I had no idea you had those symptoms during your visit. You are so very strong and an inspiration to us all! We will be praying for a full recovery, every minute of every day. Hang in there, Suzanne, as you can do this! Our deepest love to you, Jay and the kids. xxoo Renee B.

Anonymous said...

You and your family are in our thoughts and prayers.

Mom said...

Prayers are continuing with renewed fervor. Remember, I'm not too far away either. Love 'ya.

Karen said...

May God give you another miracle, this time of complete healing. You continue to be in my prayers; I will add your family too. May God give you faith, trust, strength, perseverance, peace and healing. May Our Lady place you and your family under her mantle. God bless you. Keep fighting!

Annie Bizzi said...

Remember no matter how far you walk, it's always with Him...
We are with you in prayer, always, and are so grateful for that fire within you that burns a trail for all of us.
Love you,
Andrea

Ann Armenta said...

Prayers are geared up, help has arrived and is all around you and in you -- "for in Him we live and move and have our being." (Acts 17:28) We praise God for what He has done and what He is doing even now, in and through you.
- Ann

BlessedBeLord said...

I just found your blog through another blog. You are such a strong woman. I am truly amazed. You are an inspiration for all of us. Praying that our Lord heals you completely. May he give you courage and peace and hope during this difficult time. Lots of Prayers. God bless you!

Buttercup said...

Adding my prayers!

Michelle said...

adding my prayers as well.

Lauren @ Magnify the Lord with Me said...

Got here from airing the chapel

I am so sorry for this pain and setback. Praying for your family and your healing.

Joy Beyond the Cross said...

Adding my prayers as well. I am in remission from Non-Hodgkins Lymphoma - different kind than yours, but other cancer patients are near and dear to my heart. I love, love, love your attitude!!! I will ask both the dear Bishop and St. Peregrine for their intercession! Much love and peace to you! (I came here from Kerry and also saw it on Airing the Chapel's blog). God Bless you!

Karen said...

I am having 5 Masses offered for your healing.

Anonymous said...

Your courage in the eye of disaster is a beacon to the lost ones. May your light shine in thier eyes and bring them hope.

Betty Beguiles said...

I will be praying for you, Suzanne! Your strength and grace in the face of this challenge is an inspiration.

Shannon Akina said...

So Sorry to hear about your set back. You will be in my thoughts and prayers. You are stubborn enough and have enough of an attitude you can win this battle. My family and I will pray for you always.

Kathleen Fennell said...

Hello Suzanne and family,
I was referred to your blog by our local Carmelite Secular page. I would like to add my best wishes that you experience an immediate cure from all the Cancer cells in your body. To add in accomplishing this I will present your case to Servant of God, Fr Vincent Capodanno, Catholic Navy chaplain who was killed in Vietnam. Father was a Maryknoll priest. I am confident that he will assist you.
Please know that he and all my former patients from that war will enlist God's help in your cure.
God bless you and your family.
Thank you for the opportunity to help.
Kathleen Fennell, PA-c, RN
US Army Nurse, Vietnam 1968

Peggy said...

I have been following you through friends of yours and have been praying for you. I will offer Mass today for the intention of your COMPLETE recovery and for your family in this difficult time. I will pray to Bp. Don Alvaro.

raisingsaints.blogspot said...

Hi Suzanne,
Praying lots for you and your family. Meeting you at Trumbull gave such an impetus to my work as you are doing a great job cheering up people with your sweet smile, and your courage to carry on extra miles for LOVE! Belated Happy birthday on 9/15th, a very significant feast of Our Lady of Sorrows. You are much loved.
Hugs,
Percy