I feel Good!

17 Oct

I wrote my last post on September 28th. Today, it is October 16th. I must say that today I feel amazing! I continued to be symptom free from September 28th until October 9th. That is 12 more days, added on to my symptom-free days before that. On October 9th, I got my period,  which was way over due!! This has never happened before. In fact, I always get my period early. So, when it finally arrived,  I talked myself through this period rather than surrendering to the pain and bleeding. I practiced meditation and visualization and was kind to my body. I took my nutritional supplements along with some Tylenol for the pain.

The worst day was Tuesday. On this day, I missed work. But, I missed one day instead of a whole week. I rested and spent the day reading, resting, writing and reflecting. I realized that change doesn’t happen over night, but you can start to implement change immediately.

On Tuesday, I finally saw the bigger picture. I realized how hard I have been working on myself since the beginning of January, when I returned from California feeling depleted. I felt so defeated and scared in January.  I felt like a 26-year-old in an 80 year old’s body. It was a terrifying feeling. At that time, it seemed hard to visualize ever being in a place of health , but I continued to put my best foot forward while feeling completely exhausted.

I thank my body every day as it  has provided me strength and courage when I needed it the most.  It provided me with the will to move forward through the pain and dark days.

My period has left me this month. It was the shortest and least painful period that I have ever had in my life. It was also the lightest period that I’ve ever had.

I am continuing to actively respect my body and listen to my intuition and let it guide me. For once, I am getting the rest I need and feeling rested. I am starting to feel normal, maybe for the first time in my life! I understand that there will be good and bad days, which makes me appreciate each day that I have the energy to take a walk with my dog, or smile without pain lurking beneath me.

I know that I am going to have to continue working hard each day. I know that it won’t always be easy. I know there is still a lot of progress to be made. I know that the future is uncertain. I also know that in the month of October, I avoided surgery, while making the best out of life.

Hit it!!

http://www.youtube.com/watch?v=DuDeBcpLITQ

A new week

28 Sep

It has been a couple of weeks since I wrote my first post. I am still overwhelmed with all of the support and encouragement I received after writing that first post. I have had the opportunity to connect with some wonderful people who have undergone similar circumstances. Sometimes there is nothing more powerful than being able to relate to someone through a personal experience.

So, to get up to speed. Last Friday I decided to make an appointment for surgery. The scheduling department of the hospital scheduled me for this Friday morning (September 30th).  I started to feel good about this decision as I ultimately decided that I did not want this to become an emergency event. It simply wouldn’t be worth the risk.  I just kept hearing the phrases, “bleeding out” and “blood transfusion” replaying from the day I met with the surgeon. A part of me felt like I was jumping the gun, but the other part of me felt like I was putting myself in a precarious situation by waiting any longer.

I decided that I needed to get away for the weekend so I signed up to volunteer at the 2011 Natural Living Expo in Sturbridge, MA. I booked a hotel room at the same hotel where the event was being held. Gosh, there must have been at least a thousand people who came through the expo center that weekend. Anyway, it was encouraging to be in the presence of people who shared a similar view that mental health, physical health and nutrition all play a huge role in our overall health. These pieces all deserve respect and one cannot function properly without the other, so balance is a key player in the holistic model of healthcare.

My primary goal of the weekend was to relax and love myself. Anything beyond this was an added bonus. So, I did those things and had some fun along the way. I watched some fabulous speakers on health and healing. I had a session with Dr. Ratan from India who specializes in Ayurvedic Aromatherapy.For more information check out his website http://www.fmaromatherapy.com/dr_ravi.htm.

 Sunday morning I met with Dr. Barbara Stone http://souldetective.net/about-dr-stone/.  Gosh, words can’t describe the experience I had with her. I will just say that she was well worth the visit and someone I would like to see again in the future. I hate to say it, but you kind of had to be there…

It was interesting that the general message I received was to wait a couple of months for surgery…3 to be exact. Obviously if it were to become an emergency situation, I would get myself prompt treatment, but in the case that there is no emergency, I should practice meditation, visualization and healthy eating and lifestyle practices. I should reevaluate the size of my tumor in three months via ultrasound and go from there. Surgery may or may not be in my future.

The interesting part of the story is that several days before I went away, I had stopped taking the high doses of hormones that had been prescribed to me to regulate bleeding and decrease pain. Even the high doses were ineffective and there was no difference in the amount of bleeding on or off these drugs.  Since I’ve had Terri, several doctors have tried to regulate me with a variety of birth control pills. Usually birth control is a highly tolerable medication that can ease many symptoms, but for me, they have always had opposite effects, which have left the doctors baffled. So, I thought to myself, what if I stop taking these pills? Maybe my symptoms will lessen or I will at least be able to see the state of my body without any medications involved. What are things looking like with just me and Terri and nothing else involved? So, I stopped the pills and a few days later the bleeding completely stopped. I haven’t bled since.

Now, I am not saying the pills caused the bleeding, I am just saying it is possible that they might not have helped the situation. After all, I wasn’t a normal case to begin with.  I did go on the pills for a reason. This reason was because I was bleeding so heavily and I was in such severe pain, unable to carry out simple daily activities. But, I noticed that on the pill, my symptoms got worse, and at best, remained the same.

So, I came home from a weekend away, with a lot to think about. Gosh, without our health we have nothing. I thank my body every day for what it is able to provide me. I know I will get through this somehow.  Sunday night  I took a long, hot bath with some essential oils. I slept well and on Monday morning I woke up to a voicemail from the scheduling department saying that there had been a conflict with my surgery date and they were going to have to cancel my appointment for this Friday…

A new day

18 Sep

Thanks to all  of you for reading my first post. You have all been wonderful and so supportive, sharing your love, support, stories and knowledge. It was quite a leap I took to write about this, but I am glad I did as it feels so good to know that I am not alone. Friends and strangers have reached out to share their personal experiences and support. I am happy that people are coming together and sharing, as this is what life is all about.

So, I have had a few days to think about my meeting with the surgeon. In all honesty, I am still up in the air as far as making a decision. I know that I need to make a decision in the next week or so, before the bleeding comes back as I realize it is just a time bomb waiting to go off. I keep picturing siting down with my family and the surgeon and looking at my MRI scan in a dark room filled with computers. Other doctors were also in the room reviewing other computerized records while eating lunch. Just as you see on the t.v shows, the surgeon used a pen to outline the tumor on the screen of the computer to explain to me what exactly I was looking at. I can still very clearly see in my mind exactly what my uterus looked like completely covered in a large gray blob, which would prove to be Terri the Tumor.

I think the Uterine Fibroid Embolization is a procedure that produces great results. My friend, I will call her T, came forward to tell me about two women that she knows who had the procedure done, and both women credit the procedure for changing their lives for the better. Neither women experienced any recurring fibroid tumor after the procedure. This news was great to hear. It gave me a little bit of hope after hearing the risks and complications presented to me by the surgeon.

On the other hand, I am not sure that I am prepared to make a decision about possibly never being able to bear children, along with the other risks presented. I am also not prepared to receive a blood transfusion  due to bleeding out from waiting too long…

This is tricky stuff…

Last night I went to a fabulous event put on by Salix Productions. It was called “Dancing In Pink” and was a beautifully choreographed dance performance on breast cancer held at the Kate Theatre in Old Saybrook, Connecticut. Survivors reenacted their stories with beautiful dancing and music. I spoke with many survivors and friends of survivors. Their stories warmed my heart.

I had to muster up all the strength I had to be at this event last night as I wasn’t feeling well myself and had spent a long day at the animal hospital getting emergency care for Mia, my doggie soul mate. My friend Tasha offered to come with me and her smile and positive energy kept me where I needed to be. We were there promoting the Early Detection Program (where I will be offering my time during my 11 month AmeriCorps service). The EDP program is a state and federally funded grant program that provides free screening services for breast, cervical and colorectal cancer for uninsured and underinsured men and women.  I feel honored to be working with such a wonderful program through Community Health Center, Inc.

Anyway, it was really inspiring to watch this beautiful performance led by dancers that are survivors of breast cancer. I connected with many survivors that were happy to share their stories and spread the word about education and early detection. I met this women who had lost her husband and son to colorectal cancer as well. Gosh, I can’t even imagine.

I guess what I am saying is that I am thankful that I was able to get out last night and support women and men who have suffered conditions that have afflicted their health, thus their life. I am in turn, thankful for all the support that I received from all of you.

Again, I still have many things to consider. Next weekend I will be attending the Natural Living Expo in Sturbridge, Ma and will have the opportunity to speak with many western trained doctors, natropaths and renowned healers from all over the world that have integrated a holistic and natural approach to healing ailments such as mine. I am looking forward to this event.

World, meet Terri the Tumor

16 Sep

About Terri the Tumor:

Yes, I have named this thing. It is easier to say “Terri” than
“tumor” and yes, I do talk about it, as it is a big part of what is going on in my
life and if I can share my experience and maybe help someone else down the line,
then I want to do just that. I also believe that life’s experiences are meant
to be shared and honestly I could use the support of my friends and family as
this has been really tough. Those of you who know me well know that I don’t
often ask for help. I feel like an 80-year-old women in a 26-year-old body, so
yes, this is scary and yes I could use some support.

A few months back when I found out I had a fibroid tumor, I
was surprised, as no 26-year-old expects to hear the word “tumor” in regard to
his/her health. A fibroid tumor is non-cancerous, which is great news, but at
the same time it might as well be cancerous as it has greatly toxified my life .

At the same time, I was relieved to know that these symptoms that were occurring were warning me of
something, which proved to be this tumor. I wasn’t even sure that I was going
to mention my symptoms at my annual OB/GYN exam as I thought maybe I was being
too sensitive to pain and then I thought how silly it would be to walk out of
the office without addressing my concerns. So, I did, by explaining the slight
increase in bleeding and cramping during my menstrual cycle. I had also noticed
severe bloating in my abdomen and had a great loss in energy.

Since that day, Terri has more than doubled in size. Terri has caused me to be severely anemic and in almost constant pain and discomfort.  I’ve gone to three doctors for different opinions and have tried various forms of treatment. Nothing has worked and my symptoms are getting worse.  This month, I bled for almost the entire month. Diapers lined with pads are the only way that I can comfortably leave the house, without worrying about cleaning up a pool of blood. Last Friday I ended up in the emergency room as the bleeding had become so severe. Today, a week later I was able to have a consultation with my surgeon, who performs a relatively new procedure called the Uterine Fibroid Embolization.

Below is the information I gathered from the consultation…

Risks/Concerns with Uterine Fibroid Embolization

  • As with any invasive procedure there is always
    risk of infection. With the UFE, there is risk due to the entry point, which
    happens to be a main artery in the body. This artery is the femoral artery (this
    artery is located in the groin area of the leg).
  • This procedure involves embolizing the two main
    arteries of the uterus (the right and left uterine arteries). This means that
    the two main suppliers of blood to the uterus to keep the uterus alive and
    running will be shut off.
  • When this blood supply is shut off, the tumor
    will essentially lose its food source, thus should begin to shrink. The fibroid
    tumor is not actually removed during this procedure. It should begin to shrink
    over a 3 to six month period of time.
  • There is no guarantee that this procedure will
    be effective. They have been using this procedure to treat fibroids since 2000
    and while many patients report positive results, there have been cases of women
    who do not show any decrease in symptoms after the procedure, thus having to
    undergo a more invasive surgery (i.e myomectomy, hysterectomy). I would not
    even begin to think of considering these options after reviewing them briefly
    today.
  • It is possible that I will not be able to
    conceive a child after this surgery. They blast small sand like particles into
    the artery to shut off the blood flow, thus allowing the tumor to begin
    shrinking. While these particles do a great job of blocking the flow of blood,
    it is possible that they will accidentally shoot into the ovaries, thus preventing
    the ovaries from being fertile, thus preventing conception.
  • It is known that by blasting the arteries with
    these small particles, the blow flow decreases thus leading to the eventual
    death of the tumor. The flow of these major arteries cannot be turned back on.
    Yet, when asked about the possibility of recurring tumors, the surgeon replied
    that it is indeed possible for the tumor to recur as long as my body is
    producing estrogen, which unfortunately for me, will be until I hit menopause.
    You see, 30-40% of women get fibroids at some point in their lives, but often in
    their later years, with menopause right around the corner. This makes many of
    the surgery options much more appealing. Also, depending on the location, some
    women do not experience any symptoms related to their fibroids.
  • This leads me to the next question that I presented
    to the surgeon… “If we close off the uterine arteries to shrink the fibroid the
    first time with the UFE and then a fibroid appears again, how on earth are we
    supposed to get rid of this new one if we have already exhausted our resource
    and have shut off the flow to these arteries with the first procedure?” The
    response from the surgeon was, “I don’t know.”
  • My next statement/question was, “What causes
    these things? Clearly, something is out of whack in my body as this is a foreign
    invader”. His response was, “We do not know what causes fibroids…it is just bad
    luck.”
  • After the procedure I would be hospitalized in
    order to give me strong doses of pain meds to control the excruciating pain
    that I will be in. He said that in the first 12 hours after surgery I will be
    in the worst pain of my life…something like labor pain or worse. This will be
    my body’s reaction to the surgery. Essentially it will be pissed off and
    attempt to regain homeostasis.
  • My tumor has more than doubled in size in two
    months. It is smack dab in the middle of my uterus and completely covering my
    uterine lining. Every month the uterine lining sheds during a women’s period.
    After this process the lining immediately recovers and heals and the women
    stops bleeding until her next period. Well, my fibroid tumor has covered and
    suffocated this lining so that it can never heal. It is like a scab that you
    just keep picking. So, I bleed constantly and heavily as my lining is already
    thicker than normal. Between the thick lining and the fibroid my uterus can
    never heal and have a break. It is always shedding and will continue to do so
    until something is done about this fibroid. The fibroid will continue to grow
    and as it does, I will continue to lose more blood. My surgeon is concerned
    that a blood transfusion will be just around the corner.
  • I have stopped bleeding in the last two days.
    Before that I bled for a month straight and very heavily. I asked why I am not
    bleeding now and he said that it is possible that a “scab” started to develop,
    but when the scab breaks I will start bleeding again.

That is all I can muster up for today folks. I forced myself to sit down and write this as I rarely feel well enough to do so, but I think that I am going to make it a goal to write a post every day. It is a good way for me to hear my own thoughts and talk myself through this journey.

To be continued…