Feeling Hopeful! With a Few Minor Hitches.

Hello blog followers! Let me begin by showing my HAIR! It's growing pretty fast!

Hair. Wonderful Hair!

Today is President's Day Holiday. I cherished sleeping in and not having to make my radiation appointment at 11:15 am. That time will be ingrained in my memory forever. Good news though! I only have SIX radiotherapy treatments left. I will be done next Tuesday, February 28th. Yea! I'm surprised at how well my skin is tolerating it and I've lucked out with only a slight radiation rash. The area is itchy, my skin is pink, and have new freckles where they are targeting my radiation. I am struggling with diminished range of motion and have started a better routine to break the adhesions forming in scar tissue from the mastectomy. Overall, the hardest part has been fatigue. I typically work a few hours in the morning, go to radiation, and go home to take a nap. 

I am happy to report my depression has lifted! Yes, a few changes to medications and my diet and I am feeling HAPPY and HOPEFUL. When I meet with the Radiation Oncologist tomorrow I'm going to ask him how I can refer to my status: 1) I had cancer; or 2) I am in remission. There is still the question of the nodule in my lung. They will do a CT scan in the next month or so to see if it has grown. The important thing is that I'm ready to move from being treated for cancer to being a survivor. 

That being said, I must have a hysterectomy as soon as possible. It will likely be the second or third week of March. While it's not something I'm looking forward to, it is something they insist must be done soon because of my BRCA2+ status. It puts me at greater risk for ovarian cancer.  Other cancers as well, but I'm not dwelling on them at this time.

Here's a small update about my mastectomy recovery. I still have pain from the double mastectomy and am adjusting to my new look. I am putting off reconstruction surgery for a while. The reasons? I still have pain. I finally had a realization about the pain. I read about many women who reported having phantom pain after a mastectomy. I believe that is likely what is happening to me. It is hard to describe the feeling. It feels like a burning pain. I think they also refer to it as Post-Mastectomy Pain Syndrome. I will talk with the doctor further about it tomorrow. It's quite uncomfortable. 

The "hitches" I'm refer to in the title of the blog are related to vision changes, tinnitis, dizziness, and psoriatic arthritis. The radiation oncologist said to give myself a few months to see if the changes in my vision, tinnitis (ringing in the ears), and dizziness diminish after my treatments. He said he cannot necessarily say these issues are related to chemotherapy, but they could be. I'm frustrated with my vision changes because I have to take my glasses (I'm nearsighted) off to read small print now. 

I was diagnosed with psoriatic arthritis about five years ago. I was nearly crippling at the time. I gave myself injections of Enbrel and it went into remission in 2008. Because I went through chemotherapy my immune system was non-existent. Because my immune system is starting to wake up - the psoriatic arthritis is waking up too. A few weeks ago, I saw an arthritis specialist and an ultrasound was performed on my left hand and foot and I have erosion and effusion between many joints. Psoriatic arthritis also affects the ends of tendons and ligaments. I've had pain in my left achilles heel for sometime. Now I know why. It is affecting my hands, elbows, knees, and feet. The specialist did some labwork and I'll receive those results in two days. I tested positive for HLA-B27 (a marker for auto-immune diseases) five years ago. He cannot start to treat it until after I have completed radiation. As I said earlier, I've made some changes to my diet, which I'm hoping will alleviate the pain and maybe I won't have to go on arthritis medication.

I've been watching documentaries about nutrition over the last month.  Forks Over Knives, Food Matters, and Fat, Sick, and Nearly Dead.  I also highly recommend Crazy Sexy Cancer. Each one had the same theme. Eating fresh fruits and vegetables is extremely healthy for you. Of course, I knew this already. It's recommended that we eat fruits and vegetables in our daily diet. I just read the American Cancer Society's recommendation is at least 2 and 1/2 cups per day. The documentaries highlight the benefits of a raw food diet. My friends and family have heard about my new diet approach for the past two weeks. The most inspirational movies to me were Crazy Sexy Cancer and Fat, Sick, and Nearly Dead.

Chris Carr, from Crazy Sexy Cancer, has inoperable and untreatable sarcoma in her lungs. She has kept it at bay by juicing raw fruits and vegetables, among other lifestyle changes that have been beneficial for her. Joe Cross, from Fat, Sick, and Nearly Dead, flew from Australia to New York for a 60 day juice fast. He stayed in New York for the first 30 days and traveled from New York to San Diego the remaining 30 days. His starting weight was over 300 pounds and he lost around 100 pounds in the 60 days...just drinking juiced fresh vegetables and fruits. I was so inspired by him I bought a juicer and stocked up on fruits and veggies two days later and have been drinking at least two large glasses of juice a day. I am a little OCD at times and have held myself back from the 60 day juice fast while I'm recovering from my cancer treatments. I spoke to one of my oncologists about it and he had the nutritionist at the cancer center pull together reading materials for me to read, but he said, "I'm not going to tell you that you can't eat a diet with fruits and vegetables!" 

Each movie talks about the increased energy one gains from eating a raw foods diet and I can attest to that myself. I think it's another reason why my spirits have been so much better of late. I also think it's because I'm being proactive and doing this for myself, in order to minimize the risk of a cancer recurrence. Forks Over Knives showed how several people were able to eliminate heart disease by a raw foods diet.  I wrote to Joe Cross about how much I enjoyed the documentary and how inspired I was and he wrote me back! He responded by saying he just read about how this type of diet reduces cancer risk. I am all for that! Of course, this should also be accompanied by exercise! I started walking a few weeks ago and did too much too soon. I need to start again with a modified approach! 

As I reach the milestone of completing my cancer treatments, I want to THANK my family, friends, co-workers, Chemo Angels, and anonymous people who have posted on my blog.  You have all have given me such incredible support! I have no doubt doing something like this alone would be nearly impossible. THANK YOU to each of you!!!  :) 

Soon, I'll start into the next phase of life. Whether it's in remission or as someone who "had" cancer. I will have to go to the cancer center every three months, for three years, to catch a recurrence early. There is a 30% chance it will come back. I'm focused on the 70% chance that it won't. 

From now on my life will be about eating well, exercising, spending time with family and friends, making a difference, laughing, being grateful for the little things in life, staying positive in spite of obstacles, spending time in nature, incorporating more yoga & meditation into my life, ensuring I am living in the moment, and LIVING LIFE TO THE FULLEST!

Radiation Treatments and Battling Depression

Note:  I started this blog last week and haven't been able to sum up the energy to finish it until now.  It will be a little long because a lot has happened.

On Tuesday, January 17, 2012, I had my first radiation treatment. I was not quite one month out from my double mastectomy. I thought radiation was going to be the easiest part of my journey. I met with the radiation oncologist and the staff made a "form" that I lay in so the radiation is directed where the cancer was found in my breast, in the area the cancerous lymph nodes were found, and to go up into my neck just past my collar bone.

I arrived on Tuesday at the scheduled time and the radiation (rad) tech met me at the front desk and escorted me to the radiation suite. Another tech was there and showed me the desk area where they would be watching me on monitors during my treatment. At that moment, I felt a lump in my throat and just nodded that I understood. Then they took me into a room that said "Linear Accelerator." It was the same room I'd been in days before to make the mold, but this time was different. This time I knew I would be receiving my first of 30 radiation treatments. Every day for the six weeks I have to say my name and date of birth and lay down on a table that is akin to the table one would lay on for a CT or MRI. Before the first rad treatment they needed to take some chest x-rays to make sure my heart wasn't located in a strange spot (so it doesn't get zapped). On the table, in the dark, I looked up at the machine, staying still, and I could see the reflection of my chest in the glass. I could see the six inch scar on my left side. It is still shocking and hard to look at so I focused instead on the Matrix-like green lasers that were shooting down at me from the ceiling. Again, the lump started in my throat and this time tears trickled down the sides of my face. I was surprised and embarrassedd to be so emotional at that point. Next, the rad tech came in and said the x-rays were fine and I was ready for my first treatment. It takes about five minutes.

Oh.....Last Friday, the radiation oncology nurse gave me three bottles of aloe vera gel and explained where I needed to apply the gel. She said by the end of this week I the areas being radiated will be pinkish and by the end of the 30 treatments I could have burns, blisters, and I hope not to go down that road...but I have extremely sensitive skin so it wouldn't surprise me if I did have problems with it. She asked me how I'm doing with all of this and I said my chief concern is fatigue and I just can't seem to get over it. She said "honey, it's going to take about a year, mainly because of the chemotherapy." That took my by surprise. A year. I hope not.

Mentally and physically I'm finding radiotherapy is not as easy as I thought it would be. I meet with the radiation oncologist every Monday. I was very thankful to have the opportunity to speak with him about my struggles. First off, I've lost five pounds, which normally would be a good thing, but they really don't want me losing weight right now. I can tell on the days I don't have any appetite I feel very sluggish so I'm doing my best to eat. Then, I told Dr. C of my fatigue and ultimately that I'm finding it hard to do anything at all. I sleep 12 hours a night and then as soon as I've had something to eat I want more sleep. I don't find much joy in anything.  I have dealt with depression for 20 years and this is much worse. He said he knew my Type AAA personality might have a problem with all of this the first time he met me. I am organized and I've been thrown a few surprises along the way I didn't anticipated.

I also asked him how much radiation I am receiving. He said a typical dental x-ray is about 60 rads (a dose) and the dose I'm receiving: 200 rads 5 days a week for 6 weeks.  That's a LOT!  No wonder my skin is pinking up. It helped me to understand that this is a bigger deal than I thought it would be. He also said he has seen other patients have a struggle during radiotherapy as well. People are more apt to be helpful and "there for you" when you've had surgery or are going through chemo and then stand back during radiotherapy "because it's not a big deal." He says that bothers him. It is a big deal and very hard on the body. But, the radiotherapy takes about 15 times in total and I wouldn't want to drag someone to a treatment session.  Michael has gone with me most days and has been very supportive.

Another thing I wasn't aware of is that it can take a toll on your bones. My sternum and ribs hurt terribly.  The sternum is a combination of recovering from the double mastectomy and radiation, but my lower ribs are probably just from radiation.  Ibuprofen just doesn't cut it some days. In some cases bones can crack or break.  Wow.

I have 21 treatment sessions to go.  Four weeks. I know I'll be looking back on it sooner than I expect. For now, I am trying to ensure better health by taking a better multi-vitamin, taking vitamin C, Fish Oil tablets with Omega 3's, Calcium, Vitamin D3, and my anti-depressant medication. I'm using a full-spectrum lamp because I'm not outside often and either is the sun. I did go on one walk this week to get some sun.  I walked around two blocks and it really hurt my sternum.  But I did it.  If I go to work for a few hours or to a couple of stores shopping, I am exhausted for the next 2-3 days.  I never expected that to be how this would work out!

As hard as it is to admit I am dealing with severe depression, I feel like I should be honest about it because there might be someone in a similar situation. I know I've been looking up information related to depression and breast cancer. And more information on radiotherapy. Tomorrow, I am going to meet another doctor to see if any adjustments can be made to my medications to get me through this very difficult time. And just talk about what I'm dealing with...and the other things that are affecting our family. Michael's bomb blast injuries, Conor leaving for Kuwait in May, Conor and Bonnie's baby on the way in June, and Olivia's struggles because our life has been so chaotic now since Michael's first deployment in 2005.  Ultimately, my counselor says I'm in survival mode and need to shift to self-care mode.  I'm working on that.

Teachable Moment
Here is information on depression from Fact Sheet on Depression Women's Health.Gov:
Not all people with depression have the same symptoms.  Some people might only have a few, others a lot.  How often the symptoms occur, and how long they last, is different for each person. Symptoms include:

• Feeling sad, anxious, or "empty"
• Feeling hopeless
• Loss of interest in hobbies and activities that you once enjoyed
• Decreased energy
• Difficulty staying focused, remembering, making decisions
• Sleeplessness, early morning awakening, or oversleeping and not wanting to get up
• No desire to eat and weight loss or eating to "feel better" and weight gain
• Thoughts of hurting yourself
• Thoughts of death or suicide
• Easily annoyed, bothered, or angered
• Constant physical symptoms that do not get better with treatment, such as headaches, upset stomach and pain that doesn't go away

You can get help from:  

• Family doctor
• Counselor or social worker
• Family services, social service agencies, or clergy
• Employee Assistance Programs (EAP)
• Psychologists and Physicians

There you have it.  Another bump in the marathon.  It's actually more like I've stopped running and am sleeping in a tent during the marathon while runners pass me by.  I'll get back on track and get running again, very soon.  

Done with Sixth Chemo

I had my sixth chemotherapy session on Tuesday.  It was my first session with Michael home.  It was very comforting to have him with me.  We had a brief visit with the P.A. before starting chemo.  We discussed my decision to have an oophorectomy and bi-lateral mastectomy.  I could have the oophorectomy in the 4-6 weeks between chemo and radiation.  There are also some decisions to be made about my bi-lateral mastectomy prior to starting radiation.  She also asked me if chemo has put me into menopause.  That answer is YES.  Perhaps that is why I'm feeling rather depressed and overwhelmed today.  I also talked with her about how excruciating the bone pain was with the last round.  We decided to nix the Neulasta shot this round and see if it helps reduce the pain - and hope my white blood cell counts stay in the healthy range and I don't get sick.  And, it's a good thing we're trying to go without it.  I got the bill for my treatments for the month of September and the price of the Neulasta injection went up from the August billing.  It went from $12,387 to $13,497!!!  Goodness, why in the world would it increase that much in one month?  And, I  got two injections in September.  

Next, we then moved to the chemo suite.  It was my second round of Taxol.  After about 15-20 minutes I had a slight adverse reaction to it.  I was listening to Michael and my friend Carol talking when suddenly I felt a strange sensation in my chest.  It felt like a fog was setting in.  Then, I began to have difficulty breathing.  I waited for about a minute and starting waving at Michael and Carol and asked them to get the nurse.  As I struggled to breathe, she immediately stopped the Taxol infusion and took my blood pressure.  It was high, especially my diastolic pressure.  I just focused on breathing and worked to calm myself down so we could restart the infusion.  We restarted it about 45 minutes later.  Once sure I wasn't going to have any other problems, I took a nap because the combination of Zofran, Ativan, and Benadryl makes me very tired.  We were there for a total of seven hours.  

I'm battling extreme fatigue now.  Some bone pain.  It appears as though my friend "thrush" is making another appearance.  I actually have signs of thrush on my gums, which has been there for about a week.  And, I'm quite depressed.  Maybe it's the doldrums of chemotherapy.  I only have two chemo sessions left.  Then time off to heal and then start radiation.  

I can't help but wonder if the poison being infused into my body every two weeks is killing the cancerous cells?  Will I have a recurrence?  There is a 30% chance it will return in my lungs, liver, or brain.  I hated statistics while working in my master's degree and I don't like these statistics at all.  Being BRCA2+ also increases my chances of other types of cancer.  True to my nature, I have been reading scientific articles that are coming out regarding triple-negative breast cancer and quite frankly, it's upsetting.  I know, many of you think I should quit reading these articles.  But, I'm looking for good news in these articles!  Sifting through them for new treatments or studies that have a glimmer of hope.  

I know a lot of the fight is mental.  A positive attitude.  A will to live.  I certainly have that.  I want to see my son and daughter finish college, get married, and have successful careers.  I want to grow old with Michael.  I want to start running again.  Watch the changing seasons.  Autumn is my favorite season and I feel like I'm missing this fall because I'm always resting and/or sleeping.  

Today is just one of those down days.  It has to be normal for someone living in the shadow of cancer.