The Journey Continues

Dear friends,
I’ve thought about this update for a long time. I can’t seem to collect my thoughts well enough to express what I want to say, so I’ll try to keep it simple.
I finished my targeted therapy back in March only to learn in May that the cancer survived treatment and metastasized to my skin. My status progressed to stage IV, considered incurable, according to conventional medicine. My oncologist, who originally told me my diagnosis was good because it was very treatable, gave me a pat on the shoulder and told me she’s sorry. As a mother with young children, this is not acceptable to me. Regardless, curable or incurable I could not bring myself to do chemotherapy again.
One simple prayer to God for a better path led to a series of events that culminated in my acceptance as a patient by a holistic M.D. whose been in practice over 20 years, curing many with late stage cancer.
We are full of hope in God’s guidance, my doctor’s confidence, the statistics, the testimonies, and the beauty of the body’s ability to heal when the internal environment is honored.
I’ve been in treatment for a month, following a rigid protocol of an organic plant based diet, nutritional supplementation, juicing, colonics, and detox. It’s not easy and everyday is a challenge both physically and emotionally as I face pain, exhaustion, and the unknowns. This is a journey of faith and had I not heard from God so distinctly regarding the matter, I don’t know how well I’d trust it. Still I must resist daily the fears that come with this diagnosis. Please join us by praying ultimately for a full remission, for spiritual, emotional, and physical strength, for clarity of thinking as my brain is scattered, and for my family as they deal with the stresses of my illness.
Please be in touch. Phone calls may not be the easiest, but emails, texts, visits, etc I appreciate and look forward to. Thank you for caring and for your support. On behalf of my family, your faithfulness is our joy.

Much love,

Sue

For those of you battling cancer yourselves, if you haven’t done so already, I urge you to look into getting strong nutritional support and detox. This documentary series changed everything for me, http://www.thetruthaboutcancer.com
I have been promised an access code to give away for a one time viewing of the entire 7 part series. If anyone is interested let me know. A few episodes can be viewed on YouTube

Radiation

The past few months have been very challenging. As many of you already know, I developed a staph infection, most likely from the allergic reaction I suffered post surgery, and had to undergo an emergency surgery to remove the tissue expander. This delayed radiation for a couple of weeks, and was very upsetting.
It’s hard to just go along with my doctors, who seem to explain things well but still leave me uneducated. Things happen so fast and at times I don’t know what to ask. Had I known that I could move forward with the plastic surgery later down the road I may have opted to wait. My surgeon looked at my skin after radiation and summed up that I would have had to have the expander removed from radiation damage, so either way I’d be in the same boat. Why bother then, I don’t know. I suppose success rates are high enough.
Prior to my first surgery I kept asking what I could wear to be comfortable and no one had any suggestions. Finding myself in need of a prosthetic, I stumbled upon an organization called Angelic Care, based in NJ They come to your home, fit you for the prosthesis and bras, including camis that come with pouches for surgical drains, covered by insurance. I haven’t looked into their other services yet but they offer massage and make up advice. Pass this along to anyone you may know who can benefit. They can be found online.
My expectations for radiation were that I’d get tired but only as much as to need to go to bed earlier. After recovering from the second surgery I experienced a burst of energy which was quickly weakened by the radiation and associated burns. I became both tired and restless and the constant pain is taxing. My thinking is often cloudy and I feel like I muddle through most days. I was also expecting to feel better after radiation ended, also, not my case. I’m still in a lot of pain and just as exhausted three weeks out. It was suggested that I could take several more weeks to recover. Two things I do find helpful for the burns, aloe straight from the plant and 100% lanolin. My doctor did not approve the lanolin during treatment due to lack of information, but I used it anyway and the areas of my skin that are healing quicker do not appear to be discolored as is often the case for radiation patients.
My scans continue to show good results. My lungs are fine, my heart is good, and I haven’t suffered any edema as a result of the lymph node removal. I’ve been out of touch and missing social contact, but I really appreciate you sticking with me and reaching out by preparing meals or to let me know I’m still in your thoughts and prayers.It truly means a lot.

Till next time,
Sue

Personal Update

I want to begin by expressing my deepest gratitude for all of the support I am receiving…the messages, the cards, the meals, the flowers, the visits, and the prayers. It all means so much to me. This is not something to face alone and I am blessed to have such loving people to see me through. I’ve been told countless times that I am strong and can get through this, and I believe that, but it is by your prayers and God’s grace that I endure. I do not feel strong. I feel I do not have a choice but to do what is needed to get well and accept the challenges as they come. The difficulty is in not allowing them to discourage me, so you can imagine the ups and downs. It’s best to try not to think of the past how I used to feel, or what I used to look like, only to know that how I look and feel now is how I look and feel now. The not so distant future offers hope and a fresh start beyond the cancer.

So my last chemo was April 25th and I pushed through the final weeks of side effects and tried to prepare myself for surgery. I was originally told there would be a 4-6 week recovery period before surgery, but due to the fact that my tumor hadn’t shrunk much and the aggressive nature of the cancer, the surgeons scheduled me less than 4 weeks post chemo. After 3 weeks my hair began to grow and I realized the chemo was out of my system. It scared me to be unprotected with a serious tumor, so I was thankful to have the surgery sooner, though I didn’t have much time to build up my strength.

I opted for a unilateral mastectomy on the advice of my doctors. The greatest concern with my cancer was the risk of it spreading, which it had not, so there really was no need to remove the healthy breast. I had 9 lymph nodes removed in addition to the mastectomy.

The surgery went very well according to the surgeons, and I am healing well. As it turned out, the mass was mainly fibroid and the residual cancer cells measured only 2mm. This is significant considering it was 9.5cm when I was diagnosed. It was the same with the lymph node, only 2mm. This is what was removed. Of course I asked if this means I am cancer free. It is too soon to say, but I am relieved to at least have the biggest threat eliminated. Strangely, the good news seemed to be above me. And where I am there are ugly stitches, surgical drains to maintain, pain and fatigue. All expected, but what I was not prepared for was some sort of contact dermatitis. I broke out in an itchy blistery rash all around the surgery sites and it spread to my arm, shoulder and back.  It’s hard to enjoy good news when you are miserably uncomfortable. It’s frustrating and hard.

It did not occur to me that my treatments would begin overlapping. I’d prefer to just recover from surgery but I’m continuing with targeted therapy at Sloan, plus the preliminary treatments for reconstructive surgery, and in the next month or so radiation will start. Deep breath. As you pray, on the 18th I have a CT scan of my lungs for observation of spots that were revealed previously. And although I am fine now, there is always a chance of developing lymphedema, which may require physical therapy. I hope neither of these will be of any concern.

However, I do have two very bright rays of sunshine who bring me smiles, laughter, and joy on a daily basis, and I manage to enjoy their affections without lifting them…well only a little. (I’m very careful) Both Amelia and Alba are walking, which makes it somewhat easier, since they’re more about exploring their freedom than needing me. They play together beautifully, laugh together, and imitate whatever they can. So I’ve been signing with them, mainly with meals to know whether they’ve had enough because they seem to be bottomless. They sign “more”, ” please”, “thank you”, and “finished.” It’s exciting to see them catch on and its a really simple way of adding fun to our routines.

Thank you again for all of your continued support, and if you want to visit I welcome the company.

Much Love,
Sue

 

 

An Update and a Call to Persevere…

Sorry it has been so long since the last blog post. It’s amazing how days peel off the calendar and all of a sudden a month goes by!

This past month has been a rough one for Susana. At the end of February, Susana had her last round of the first drug of chemo. Because of how the drug had accumulated in her body, she responded the worst. All of her normal symptoms were heightened – the nausea, the fatigue, the tiredness, the aches. On top of all of this, she experienced horrible mouth sores that left her unable to even speak. It’s difficult to even fathom what kind of physical and emotional turmoil something like this can have in a body, mind and heart. For an entire month, she was unable to be around people because of her delicate immune system, she couldn’t talk to people on the phone because of the sores in her mouth and the overwhelming fatigue left her unable to even string together words for an email or a text message. Depression sneaks in as a downward cycle of isolation and physical pain. It is in these moments as I think of Susana where I realize what a fighter you have to be to be a survivor of this cruel disease. In my mind, as I hear about people who have cancer, words like chemo and treatments and surgery get flippantly thrown around. But, not any more. Chemo, though a lifesaving drug, sucks the life out of the fighter along the way. And so I pray more deeply for Susana and those others I know who are working hard to get to the light at the end of the tunnel of recovery.

For Susana, she has now started her second drug of chemo. Supposedly, this drug will have fewer and less intense side effects. But now, it is about a 5-6 hour process of the drug being administered. That makes for a long day. Thankfully, her aunt has graciously volunteered to drive her to her treatments so that her husband can go to work and her mom can stay home with the baby girls. So far, Susana describes her side effects of this drug as flu like symptoms, muscle and bone pain, weakness in her hands and tiredness. The nausea is a bit better, but still…not a way any of us would want to feel on a daily basis. 

Once she has finished the second half of chemo, she will have a resting period before surgery. The surgery will probably take place some time in June. There will be quite a recovery period after that, where she will be unable to pick up her little girls. So, while surgery marks a hopeful ending point, there will still be more weeks of recovery following. And then begins the hopes and prayers of no more cancer to be found in her body. 

Thank you for journeying with Susana through this time in her life. Many times, when we find out something tough like cancer or death, there is an overwhelming amount of support at the beginning, but then life moves on..and we often forget that the suffering still suffer. So, I want to encourage us all to continue to pour our love out on Susana. This can be through fb messages, cards, gifts. And though she may not have the strength to respond to every single one, your words of life and hope and strength push her to stay strong. 

For those who have considered wanting to bring a meal, please email me! They are welcoming any kind of help in that way. Her mom has been a tremendous source of help, support and encouragement, but as you can imagine, taking care of twin babies, keeping up on the house chores and making meals all day can get tiring. So, if you desire to bring a meal, please feel free to email me: katemgarcia@yahoo.com and I can help you set up a time to bring something over.

Thank you again – we stand in her corner and pray for strength for the journey.

 

Winter is here

I sit and write and see the sun trying to peek through the grayish clouds that have been sputtering snow and ice down onto us for the last couple of months. The sun brings a hope of the spring that is to come. In the monotony of the grey days that happen here in the midwest, sometimes the idea of spring seems unimaginable. You get lost in the grey and wonder if winter will ever end. But thousands of years of history tell us…it will. Winter will end. Spring will come. It always does. Seasons are a part of this world and our lives. Winter is bearable because you can count on spring coming. 

In a similar way, Susana is deep in the winter of her treatments. With the first treatment, there was an anticipation of the “newness” of it all, there was hope and strength that she was able to bring into the process. The second treatment followed a similar pattern in how her body reacted and though it was still very tough, it seemed like a predictable pattern was forming and one that she could prepare for for the next time.

This past treatment, brought with it curve balls of new reactions and stronger side effects. Ones that didn’t follow the same pattern as the previous 2. There is a weariness and a frustration that happens when the one thing you feel like you can control (a predictable pattern of side effects) also gets stripped away. And she looks ahead and sees that there is one more treatment before she even hits the half way mark. In many ways this journey felt like it just began. But in the day to day monotony of headaches, fatigue, nausea,mouth sores and pain, it feels like it will never end. But it will. This is a season in the journey of healing. Winter is here. But spring is coming. 

After the next chemo treatment, Susana will then begin 4 more cycles on 2 different drugs. It will be a whole new ballgame as she will learn how her body will react to the new drugs. Please continue to pray for strength for Susana as she takes each side effect as it comes. Pray that she would stay healthy and that her body would fight for her. 

Susana’s mom has been with her since the beginning of chemo and plans to stay as long as needed. She has been a huge blessing to Susana and her presence brings such peace and comfort in the midst of chaos. 

Thank you for all of those who have sent cards and gifts. It’s amazing what a card or something in the mail does to your spirit. They are tangible reminders of how we are all in her corner – cheering her on and loving her through this. If you would like her mailing address, please feel free to email me (katemgarcia@yahoo.com). Also, if you are interested in bringing a meal to her and the family, it is very much appreciated. Though her mom is a very capable cook, it is nice to have a little break with all of the other tasks of the day (taking care of 9 month twins, cleaning, doctors appointments, etc). You can email me (katemgarcia@yahoo.com) and i can help you set up a date that would work best for them!

Thank you again for following Susana’s journey. This is not a season that any of us would ever desire to go through, but this is where her journey has led. The sun is peaking through the gray and we hold on to that ray of sunshine and believe that this season will be over soon.

Happy Birthday

Yesterday was Susana’s birthday. A year ago, as Sue was thinking about what her life would hold over the next year, she was growing two sweet girls in her belly. She had to be dreaming about what life would be like to be a mother and how things would change drastically. The new normal of her next year of life would be filled with diaper changes, feedings, sleepless nights, coos, giggles and cuddles.

Never did she guess that this birthday, she would be spending long days at a cancer treatment facility, weeks of nausea, hair loss, physical pain and emotional stress and disbelief as she would begin the battle against breast cancer. All the while, caring and mothering her baby girl twins, being a wife, a step-mom, a friend, a daughter, a daughter in law, a sister, a sister in law. It was not a story she would have written for herself. But, who would choose this path?

So Sus’ birthday this year is one filled with much emotion. As Sue looks at herself in the mirror on this birthday, she is face to face with the effects of chemotherapy. Hair loss, a foreign object sewn into to her skin, and the battering of the drug in and through her body. Pain and frustration over the devastating news of breast cancer. Physical fatigue from the side effects of chemo therapy, mixed with emotional fatigue as cancer forces you to face the brevity of life in a way that nothing else can.

There is also hope and faith that this is the year that breast cancer will be fought and defeated. That this year will be a year of healing – even though the healing occurs through much pain.

So we say happy birthday to you, Susana! We give you prayers. We pray that you would continue to stay strong as you face this battle that we all wish we could take away from you. We give you permission to feel the sadness and frustration of this journey without “easy answers” to try to make it all go away. We give you love and say how proud we are of the way you are walking this journey with such grace and perseverance. We are proud to be your sister, your mother, father, your mother in law,  your father in law, your daughter, your step son, your friend. You are so deeply loved.

And what could bring more joy in the midst of pain than innocent little girls enjoying simplicity.  Here are Sus’ darling daughters bringing life and giggles, hope and sunshine on a cloudy day. Enjoy!

Juggling Clowns: In the trenches of Chemo

One of my favorite parts of going to the circus is watching the juggling clowns. I’m always in awe of how they can somehow keep adding random objects into the intricate pattern of tossing and catching. Sometimes they’ll balance a baseball bat on their forehead while continuing to juggle. I’m just amazed. I can hardly toss one ball up in the air and catch it successfully.  But, I think every good juggler knows that the secret is not adding more to the routine than you can handle. What would happen if someone from the audience randomly threw a ball at that them? Their juggling routine would be thrown off, their attention diverted and the show would be over.

In many ways, I feel like this is where Susana is right now with life. And really anyone who has to stare down the face of cancer and chemo. She was going about life – caring for twin baby girls, running a household, being a wife. And all of a sudden, a ball from the audience was tossed into the routine. The difference is this ball that is thrown in is asking for all of her. Chemo is not something that just fits in to life. It takes over life for a season and everything else has to somehow fit. 

The tumor that Sue has is the size of a baseball. And the goal of chemo is to shrink the tumor before they operate on it. SInce her first installment of chemo last week, Suz has had a few good days. But then the killer drug takes over and fatigue, nausea and pain come crashing in unexpectedly. Sue is working hard to be a present mom for her 2 little 9 month old girls in such an important developmental time in their lives. On top of the normal tasks a day brings. She is taking each day at a time. As we can all imagine, there are times when the road feels dark and endless. Joy comes in slivers and as quick as it comes in, it oftentimes is eclipsed by the immediate physical pain and discouragement over the reality of this season. 

As a relative and someone who loves Sue, I feel helpless. I wish there was a magic wand I could wave over to take the nausea away. I wish I could take over her mothering duties and allow her to just rest and have all the strength to fight this. But, I can’t. And even if I wanted to, she wouldn’t let me because she is a good mom who is not just fighting this cancer, but fighting to be present for her girls.

I wish I had the right words to make it all better and sometimes I am tempted to try to give her quick and easy answers. “It’s going to be ok” or “at least it’s not…”, but I know that’s not helpful at all. The best way I can love and encourage her is to be in the moments with her. To allow her to be sad and frustrated and share her heart honestly without fear that I’m going to turn her feelings into a lecture. Because the reality is, I have never been in her shoes. But what I can do, is listen, love and pray. 

And though it may feel like I keep saying the same old thing, the best thing we can do right now for Sue is to keep encouraging her. Sending her messages, emails, letters, dropping off goody baskets that bring those slivers of joy throughout a day of pain. If you want her address for mailing or have any desire to provide a meal for her, feel free to email me at: katemgarcia@yahoo.com and I can give you her address. It is so important that we continue to walk this road with her – that she knows we are in her corner and cheering her on. I don’t think any of us expect her to be approaching this with happiness and excitement. The bottom line is: cancer sucks. It interrupts lives with pain, fear and disappointment…every time. So, let’s keep loving Sue and praying for her. She is strong, brave and determined to walk this road with strength and dignity!

Chemo Round 1

So, this week has been the week in which reality is  setting in. Up until this point, doctor appointments for Sue have been filled with tests, prodding, diagnosing, and setting a game plan for treatment. This week that game plan has turned into actuality. On one hand, there is much hope, knowing that this is the treatment that is going to shrink and eliminate cancer from her body. On the other hand, there is so much uncertainty with how chemo will batter Sue’s body in the process. It’s a strange irony that the same drug that is going to help heal a body is also going to reek such havoc.

On Monday, Sue had a port placed into her body. If you’re like me, I wasn’t sure what that meant. This is what I found:

“A port is a small disc made of plastic or metal about the size of a quarter that sits just under the skin. A soft thin tube called a catheter connects the port to a large vein. Your chemotherapy medicines are given through a special needle that fits right into the port. You also can have blood drawn through the port. When all your cycles of chemotherapy are done, the port is removed during another short outpatient procedure.” (breastcancer.org)

Today, Thursday, Sue had her first of 8 cycles of chemotherapy. The drug took about 2 hours  to be administered through the port. The nurses were very intentional about making sure she was comfortable and everyone was so accommodating and attentive.

Though everyone reacts differently to chemotherapy, there is a general rhythm that is experienced. The day chemo is administered and the couple of days after, are usually “good days”. Once the steroids wear off and her energy dwindles, those good days are followed by a few difficult days. These days will more than likely be filled with much fatigue and nausea. And slowly she will gradually regain energy…only to begin the next installment, which is on January 31st.

Unfortunately for Sue, she is already feeling the nausea. She has always been sensitive to medication and there is a fear that this will hit her hard. As we think and pray for her, one major prayer we can ask God is that He would allow her to have minimal discomfort; That she would have the strength to to make it through the “difficult days” and that she would find long stretches of relief through the pain.

Another byproduct of chemo is that as it is fighting all of the cells, it also destroys all of the “good” white cells, which leaves her very susceptible to infection. During this “flu” season of the year, there is an even greater fear of her getting sick. Will you also pray that she would have protection around her body from any infections or virus’ and that her body would remain as healthy and strong as possible to work with the chemo instead of against it?

Sue’s mother in law was in town for the last few weeks, working tirelessly around the clock to help everyone in the family. It was so great for her to be there. And now Sue’s mom is in town for as long as needed. This is a huge blessing for Sue to be able to take a deep breath knowing that there will always be delicious food on the table and her baby girls will be well taken care of. And there is something about your mom being present in such a helpless situation that brings such peace.

So, if you’re like me, I’m sure you are asking…”What can I do?” “How can I help?”

Of course, the main thing is to continue praying for Sue during these few months. She has been so deeply encouraged by your kind words, prayers, letters, emails, and facebook messages. Even today, she was nervous thinking about what this day would bring, but the many words of love and encouragement she received today brought so much comfort. There is something so powerful and comforting knowing how many people are standing behind Sue and walking through this battle with her.

The reality is, at this point, they don’t really know what their needs will be. Until we see how her body responds to chemo, we may not know for a while how we can tangibly help. It does seem that the days she has chemo administered are really long days for her and the family. If you are interested in bringing a meal on one of those days (the next day will be January 31st), please email me at: katemgarcia@yahoo.com and I can connect with you on the details.

Other than that, let’s keep showering her with love, encouragement, support and hope. She is strong and will fight this!

Life Doesn’t Make Room for Cancer

Thanks for checking back in to Sus’ blog. As she learns more, I will continue to update this blog with how she is doing, both physically and emotionally.

While the report that she gives is very positive – we must be reminded that this “good news” is in the context of cancer. As she says, her prognosis is very good, but the path to healing is going to be very hard. It’s difficult to walk through the realities of chemotherapy, surgery and radiation. Above all of this, Susanna is going through this as a mom to twin baby girls.  

With that said, we are thankful for the hopeful reports. Thursday is a big day – it is when the chemo begins. Everyone responds differently to the killer drug, so let’s pray for minimal side effects and complete healing. Thanks for all of your kind messages, prayers and encouragement. Let’s keep surrounding Sus, Jim and her family with love and support. 

Here is her latest update:

• Bone scan came back negative.
• CT scan, negative.
• Hormone receptor test, negative.
• Genetic test, negative.
• HER2 test, positive.

This is good news. It means from a medical standpoint, the cancer will be easy to treat. I should respond well. I’m having a portacath implanted on Monday and begin chemotherapy on Thursday. Treatment will last 4 months followed by surgery and then radiation. This seems simple compared to the stresses and challenges all around me. 

Life doesn’t make room for cancer. Feeling overwhelmed.

-Sus

The Diagnosis

Welcome to the blog of Susana Villarino. I am a family member who is helping Susana use this blog to communicate to friends and family the latest in her battle with breast cancer.

You may have found this blog because you are someone who loves Sus and desires to stay updated on her health status. Maybe you have come to this blog because you were searching to find people affected by breast cancer. No matter what brought you here, we hope this blog will bring information and encouragement.

This is not an easy road. And we don’t know what is to come, but as we travel with Sus down this road, I pray we remember that this is her story and her reality. Many times we will often feel helpless in knowing how to encourage her. Our desire will be to say easy words that sound good, but these same words aren’t actually good for her soul. We may want to give her advice or tell her stories of other people we know who have gone through this.

Can I just ask that we offer words of encouragement not words of advice? Susana is working with good doctors and is very informed with her options. So, the best thing we can do for her right now is to write her letters or emails or give her a call and just say, “I love you…I’m praying for you…how can I help?”

This is Sus’ first health update. Thanks for being here and following her journey:

I’ve had a week and a half to reflect…seems like an eternity. 

This isn’t going away and I don’t have a choice but to face it. But first to understand it a bit. 

So there was this mass that seemed to just appear. Not something that started out small and grew. Being that I was nursing I thought it was related and would just go away when I stopped. The lesson: do NOT ignore anything abnormal. For women that should be a no brainer…we have two breasts. If one is not like the other get it checked!

I was in my mommy mode and didn’t want to be bothered. Would it have changed my diagnosis had I been checked sooner? No, but it would have changed my treatment if it was detected sooner and prevented the risk that comes with spreading into the lymph node. Even with a swollen lymph node I didn’t go to the doctor.

I finally went when an itchy bug bite-like pimple appeared and would not go away, along with pain. Sharp shooting pain, especially in the middle of the night and a burning pain. If anyone says cancer doesn’t hurt they are misinformed.  Of course cancer was the last thing on my mind especially since I was breast feeding, which is said to lower your risk. But once I was seen and sent for a biopsy I knew. The symptoms were too clear. 

Here they all are:

• A mass or lump
• A combination of tiredness, dry flaky skin and
• Itchy skin
• Swelling
• Swollen lymph node under the arm
• Pain

Later came:

• Bug bite type pimple that persists
• Redness 
• Welt like appearance on the skin
• Dimpling of the skin
• Bruising appearance 

This is “Invasive Ductal Carcinoma.” Devastating news.

Yet it’s common and treatable. Good news.

But when it feels like everything is falling apart a simple “you’ll get through this” doesn’t seem to balance with the heaviness and fear and dread and despair of this diagnosis. Though true. The bottom line is it can be beat, it will be beaten and there is no choice in the matter. 

I’ve cried a lot, made a lot of calls, and requested prayer. I am overwhelmed by the outpouring of love and encouraging support from friends old and new as well as those I’ve never met. Now I feel more ready to face the road ahead. I have a peace I did not have initially and my fears are calming down.

Thanks to the loving-kindness and prayers of everyone who is seeing me through this, I now know what it means to be carried in prayer. Each one matters and for that I am sincerely grateful. 

I put off starting chemo to get another opinion but expect to be starting some time next week. I will update you with my treatment plan as soon as I know.

-Sus