So, How's it going?

The answer is great in some areas and ok in others. Just a few updates from my Month of March Hiatus.

The decompression therapy seems to be going well. I do feel relief in my neck/spine. Last week the chiropractor added more weight (30lbs) from the original 25. Unfortunately,  I did have a headache for the next 3 days, continually. When I went back on Thursday I told him and asked if the weight increase may have caused them to return. He said possibly, lowered the weight and Thursday was better.

However, Friday after working out another HA began and it was a bad one. Lasting until I woke up this morning with pain meds only taking the edge off. It was looking good at first but the HA's seem to be increasing again. None today!

Next steps; probably need to call my neurologist, which I had been holding off on and let him know....there back! I do have a new primary care doc. visit in May. I will try to see if they can get me in sooner. If not, I have been given 3 more PC docs to try by my Onc. nurse. One of them offers acupuncture in his office and I have heard many positive results for HA's using this treatment.

The workouts have been amazing and my energy levels are climbing! My concentration has been on swimming, yoga and cycle class. Loving all 3 so far. With all the surgery and radiation to my upper body, I feel the swimming has absolutely been the best way to build back up strength in this area. I do feel a "heaviness" and weakness in my right arm when I swim but it is manageable.

 Not to mention a few added benefits to joining the health club that are helping with stress and just kind of nice!They have  indoor hot tubs, eucalyptus saunas and a spa that offers everything. My friend came to visit from out of town and we enjoyed all three including a facial, which I have never had :) I use the  eucalyptus  steam sauna after each swim. There also appear to be several health benefits to this as well.

I have seen my little grand-baby boy during the past few weeks, just have not had him all day. He is now 5 and a half months old and just makes me happier than I could have ever imagined. With that, I will leave you with some pics of one little guy who makes me smile with his beautiful big blue eyes and smile.

Month of March and Many Decisions

I have started to write this post two times prior and have just put it away. I have made some decisions and will just simply jot them down and how they are working out so far.

First choice was to take the month of March off from all my teaching, training and even a little break from my "Nonna days". That opened up time for me to concentrate on the changes I felt were absolutely necessary to help me with the continual headaches, fatigue and stress.

My husband and my  counselor Dr. K agreed with this decision and encouraged me to "be kind to yourself". I have realized that from the beginning of the stage 4 diagnosis I have been working so hard at living..moving forward...working..staying healthy...fighting...that it felt wrong to rest, wrong to take a break, wrong to focus on myself at a much deeper level. To assess where I am, what I have gone through for almost 14 years, and where to go from here. Quite frankly, I had become exhausted!

Not only were my doc's, family and friends very supportive...so were all my clients I train. I was worried about putting our classes on hold for a month. I am very appreciative of them, their prayers and support.

After step one to put a month aside it was time for step two. The headaches, which led to even more fatigue, a lot of sleeping and medication for pain and yes, depression. This was NOT a fun cycle! I was really starting to feel "sick" and knew I was sinking into a hole that I had to dig out of. When you are constantly living with pain it becomes so hard to get through day to day. Especially when you live, or are trying to live an active life. On the last day of my GroupFit class everyone looked at me and said "you have another headache don't you"? I asked "how do you know that"? They said "we can see it in your eyes", you are doing a good job of covering it up, but we can tell".
I think that was one of the turning points for me that I realized I  had to deal with this.

I made an appointment with a primary care doc to help me manage all this. I have only been under the care of specialists for the past 4 1/2 years. I felt she had some great suggestions for me. However, I also got the impression she saw my life as very "short term". I thought and prayed about it and decided I need to move on and find someone that is on the same page as me, my family, friends and other docs. Someone that will help me live a life with HOPE for a very long future. So, the search continues and I have another primary care doc. lined up in May.

I had been holding on to a chiropractors name and number given to me by Dr. K. I felt comfortable and trusted his recommendation. This visit went much better! He went over my MRI reports with me which show disk protrusions and spinal stenosis in a few areas. This is NOT the same area the cancer had been in my spine but is causing quite a bit of pain. He said it may very well be causing the headaches/ migraines. So, I have begun spinal decompression therapy. I will write more on it in another post but it seems to be working so far!

Next step, I joined a health club. Yes, I am a personal trainer and yes I have a home gym. But, I felt I needed to take some time to be the student, to take the classes, to have some one on one with other trainers and mostly to get stronger again.  I have gone back to swimming, and have missed this tremendously!  It is so much easier on my body right now. By day 2 back in the pool I swam a 1/2 mile and was happy with that. I have some goals I am working towards and will keep an update on that as well.
I have begun a yoga class and love it!  I am feeling stronger and the stress relief from that class makes me want to go every single day.
 All this  is helping tremendously with stress, energy and feeling stronger in areas I was feeling very weak.
I did meet with a personal trainer and have a greater appreciation for my clients who show up nervous and excited on day one and have to face where they REALLY are with their health and fitness. For health purposes I am within "normal" ranges. However, I am neither happy or comfortable with my Fit Point results. Yes, this is the trainer and marathon runner in me coming out. So, in time I plan to work back to where I was or as close to it as i can. IN TIME.

It is March 12th and these changes have reduced the headaches by about 85/90 %, which is huge! My energy and spirits are both up and I look forward to each day once again. For now, this is where I am and hope to continue well on this journey of "living life with stage 4 metastatic cancer" while running, swimming, breathing and being kind to myself.

Crossroads

It has now been nearly 5 years since my second diagnosis which led to  Stage 4 metastatic disease. As most of you know my recent tests all came back showing No Evidence of Disease (NED) which is fantastic news!

However, Chris and I have been considering where to go from here. This has brought us to a crossroad with my treatment and care.

It does appear the current treatments are working and keeping the cancer at bay. We now want to shift our focus to adding complimentary care to help relieve some of the pain I have in my neck, the constant headaches and stress.

So, we are looking into Cancer Treatment Centers of America. Their Chicago hospital specializes in breast cancer. This is where I will be going to meet with a team of doctors and complimentary care physicians. Of course there will be an oncologist and radiologist that "head" up the team.

So why choose CTCA to help us make some decisions? I am very interested in their team & patient empowerment approach.
A few of the specific areas I hope to add to my treatment are;

• acupuncture
• chiropractic care
• nutrition & naturopathic medicine
• stress management such as yoga, counseling, support groups
• pain management

Much of these I have been doing on my own over the years. I have a great Oncology team here, as well as a great counselor. Nutrition, exercise and stress management have been on-going for me on my own.
What intrigues me  is all of it being done by a team of docs in the same place and in communication with each other about my treatments and progress. With everything from the oncologist to the acupuncturist.
 Another option is to put all this together here. Finding all the right people ( who know how to work with Stage 4 mets. patients) to integrate all this, and communicate with each other seems very difficult, but will be another option to look at.

I have not made a final decision on going up there for a second opinion yet. We are praying for wisdom and discernment about my future care and welcome your comments and opinions. Especially if you are familiar with CTCA ( either positive or negative experiences)either for yourself or someone you know.

Be Inspired Today...

N E D....

                                               No Evidence Of Disease!
My PET & Bone scans came back showing no metastatic disease!

I had an MRI of the Cervical and Thoracic spine. Both came back showing no  disease, however one of the reports states " spinal stenosis and central disk protrusion @ C4-C5 and left paracentral disk protrusion @ C5-C6 and C6-C7".

At this time I need to speak with my Onc. about what is next. I am considering a few things for the pain in my neck and headaches.
Acupuncture and physical therapy are most likely where I will begin. My Onc. said I can go to a chiropractor and massage therapy, however they will want to see the MRI results before working on me. I am not allowed to have any "cracking" of my neck. T1-3 area was radiated a few years ago from the cancer spreading to this area.

My tumor markers are elevated, although nothing is appearing on the tests. This will be something we will keep an eye on. My nurse mentioned coming back in 3 months for labs to see where the numbers are at.

So, overall, very good test results! We are trying to figure out what the best "complimentary" treatments will now be to help with the pain. If you all have any suggestions for the neck and headaches, I would be happy to hear them. Thanks!

Waiting...

This morning at 10:00 I had my tests which lasted about 4 hours. My hubby waited patiently for me while I had 2 MRI's and a bone scan. Long, hard day. Waiting now for test results.

Image Reborn Foundation...just registered!

Here is just a little information from their website. I hope I am chosen to go. It sounds like a wonderful experience with other survivors. An opportunity not many of us get. Fingers crossed!

"Our mission is to provide no-cost healing retreats to women who have been diagnosed with breast cancer. The focus is on encouraging women to reclaim their sense of personal power and to strengthen them in their journey toward healing on all levels and living fully".

Image Reborn's Living Beyond Breast Cancer retreat program is designed and facilitated by a highly professional staff with backgrounds and experience in addressing the special concerns of women with breast cancer.
The retreats run weekend programs, and are conducted in the beautiful, peaceful mountain setting of Park City, Utah. Approximately ten guests can be accommodated at one time.
The Program includes:

• Women's Support Group offering the opportunity for participants to share experiences, kindling courage and understanding, allowing them to rediscover a sense of personal power.
• Education: Opportunity to visit in a small group setting with healthcare professionals regarding available treatment, including conventional and integrative approaches.
• Nutrition: a positive and delicious approach to food.
• Exercise: gentle movement and stretching specifically designed for women with breast cancer.
• Journaling: instruction on how to utilize journaling to enhance life.
• Massage Therapy: light professional massage for relaxation and pampering.
• Rejuvenation Time: private time to allow for rest, contemplation, or whatever each individual desires.

http://www.imagerebornfoundation.org/index.php