Tag Archive | herceptin

A Smoking Gun?

It’s been a year since I began playing detective in my own health answers! This week brought some news that may be the smoking gun in my year long pain in my right side. When I approached my oncologist several weeks ago to explain that I was feeling unusually fatigued, he ordered up blood work. That was when my B-12 came back very low and he started me on oral Rx strength supplements.

One month later, I felt no better so he re-tested me and although the numbers were rising (which is a good sign), they still were not near where they needed to be so he ordered up another test (which I turned up positive for) of a very rare condition called Anti Periental Antibody causing Megaloblastic Anemia. This means that my stomach lining is not able to absorb B-12 and my liver could be using up the stores it has, hence the liver pain. He is referring me back to gastrenterology. As I am beginning to read more on the net about these disorders, I am learning that they can be a side effect of having received chemotherapy. He believes that it may be treatable using an antibiotic that stays in the stomach and kills off the bacteria that are destroying  my body’s ability to produce mechanisms for absorbing nutrients.  He wants me to discuss this with the G.I. doc. Funny thing is that this all began when I was referred to G.I. for the esophageal strictures I had last year. The G.I. doctor never considered this condition, possibly because it is only found in 2% of the general population.  Needless to say, I think we are on to something!  Here’s to keeping my fingers crossed that this might lead me to the relief I’ve been waiting for!

We are going to the Maryland beach this week with all 4 kids, renting a condo, and spending some much needed rest together! Tim’s condition has not improved but he has faxed all of his records to a specialist at UVA Medical Center who he has been authorized to receive a 2nd opinion from.  While a high percentage exists that Parsonage Turner Syndrome is the correct diagnosis, his right hand pain and numbness, loss of dexterity and certain other signs point to a possible spinal cause. This doctor is a neuro-spine surgeon.  In either case, we pray that he can find some relief soon and even a few days laying on a beach will be a nice break from daily physical therapy and office work.

“Til next time!

A Change Of Pace

I am in Missouri this week, babysitting my 2 year old nephew and 5 year old niece. Ten days of stepping back YEARS in my own life of 6 a.m.wakeup calls and bed time giggles and story time.

The joys of childhood’s innocence! There is nothing quite like that wide eyed wonder of falling leaves, spider webs, starry skies and making pancakes!
Today we spent the day at a working farm with barn animals, a place we use to take our own kids 15 years ago when we lived here. A dry, sunny Indian Summer day, and perfect for our picnic too!

I captured lots of great photo shots (even showed my niece how to get a great pose! She took this photo of me) – and we enjoyed a visit with grandpa and grandma in the afternoon.
Even though this is an exhausting pace,it is a wonderful change of pace, and one that I am thoroughly enjoying! Read more below…
Although I am on a bit of a working “vacation”, I am ALWAYS in the fight against breast cancer, and reading, researching, and collecting all of the information that I can.The month of October has no shortage of resources! Click on this link or directly on the video at the bottom of this page to listen to what Dr. Susan Love has to say about where we need to go now in our fight, and how the pink ribbon awareness campaigns of 25 years have worn out their welcome….what we need now is to END breast cancer.

Can I quit cancer?

I was asked tonight (by a woman I met), “So are you cancer free now?”  I’m sure a lot of people wonder that about those of us who have had cancer and the straight up answer is, I hope so!

“No evidence of disease, or NED, is the new ‘remission”.  But there is no cure for cancer and a certain percentage of cancers will recur, and nobody really knows if it will happen to them. Statistics get thrown around, charts and studies would conclude that the odds are in my favor of remaining NED, but there are no guarantees as we would all hope for. Such a guarantee  is just out of reach.  If it were, then I could stop thinking about it on a daily basis and we could all just leave Cancerland behind us.

I woke up the other day and thought to myself, what if I just didn’t talk about breast cancer anymore. What if I stopped going to support groups, stopped visit the oncologist, stopped hanging out with fellow survivors for coffee and lunch dates, WHAT IF I JUST QUIT CANCER?  Maybe THAT is what would get me to move further along up the road. I’ve learned of plenty of people who did just that. They never spoke of it again, and they went on in their lives and stopped identifying themselves as survivors. But then later in the week I was working the volunteer hotline and took a phone call from a woman who has stage 4 breast cancer which has spread to her bones.  She really needed someone. I found it hard to relate to a lot of what she is going through, but then we found the common bond of our faith, and it was there that I realized my BEING here in Cancer is for women like her. Women who need a ray of hope.   A hand of compassion.  There is a sisterhood here that few can understand. I know that when I was in my darkest hour I needed the survivors whom I met and became my friends. I needed the help of those who had gone before me and came out the other side, happy and healthy. I needed them like others need me now and so I guess I won’t be “quiting” cancer anytime soon.

Update

The mri and ct scan came back yesterday. My cervical and thoracic spine have “multiple hemangiomas”. These are typically benign vascular tumors. Now I am waiting for my appointment with orthopedics to find out what we can do about it. Lots of waiting these days. Still no relief from the numbness in my back.

From what I am reading these can become large enough to cause compression fractures but can be shrunken using radiation. I really have to find out more when I talk to the doctor but the good news is that my oncologist isn’t concerned about a cancer of any kind at this point.  Radiology recommended a follow up ct scan in June to see if there are any changes on a nodule that showed up in my lung (which honestly may be absolutely nothing).

Thank you for your continued prayers.

On The Move!

s110562069208_7991The training has begun! I am walking an average of 3.5 miles a day to prepare for the Avon Walk that I will be doing in just 6 months. CelebrateThe fall foliage and cooler days makes this an enjoyable activity and I also frequent the gym for additional weight lifting and endurance work outs.  I held a fund raising event at the breast care center at Walter Reed Army Medical Center last week and raised 8% of my goal by selling my jewelry creations. So far I am at nearly 30% raised so I continue pressing on with those efforts a little bit every day. Thank you to all who have donated so far! My Avon Walk page can be viewed HERE.

This week my MRI results came back all clear so that was good news! I must admit I held my breath for those 8 days waiting for results.  I am told that this feeling of dread lasts a long time, at least until the ten-year survival point.  Even then, with no cure for breast cancer,  the fear of recurrence looms all the time. The MRSA infection in my arm continues to heal well and is down to a dime-sized scab with some scarring.

In the meantime I celebrate LIFE and help those newly diagnosed whom I meet, which seems to be nearly every week. The numbers of women affected by this disease never ceases to amaze me. Giving them hope and support gives me a reason to continue fighting for a cure.

The Numbers Don’t Lie!

Sample07This week I had a MUGA scan of my heart. This is a nuclear scan of the heart. Muga stands for Multiple-Gated Acquisition, a 40 minute test where the radioactive tracer injected into my bloodstream is tracked and followed by a gamma camera as I lay on a table with electrodes stuck to me and a machine records all of the activity. I began getting muga scans before starting my chemo therapy in December.  Things looked fantastic then, as I scored a 69 and was told that 55 would be optimal. Then I had another scan in March showing slight decrease in heart function at a scoring result of 65.  In July that number had gone down to 62.  That’s when I began to worry that the remaining 5 months of therapy were going to do more damage, and I’d better to something to get my heart back into shape if I could. That’s when I joined the gym and for the last 6 weeks have been exercising rigorously 3 – 4 times a week.  Tuesday’s scan showed a slight improvement and came in at 64, the ejection fraction which is an indicator of heart function.  It is no wonder! I feel great and I feel strong and am not tired all the time like I was earlier in the summer.  I will have another scan when chemo finishes after Christmas. What will a full 3 months of spin classes and treadmill do for me!? I can’t wait to find out!

What causes breast cancer? <—

The countdown begins!

I finished my 25th infusion of Herceptin yesterday and have just 5 more to go now before completion, just before Christmas. Then I will officially be done with one year of chemo therapy!  While at the hospital, I got to meet with my new oncologist.  This new doctor is actually the head of oncology at Walter Reed, and has agreed to take me on as his patient.  I had begun an oral chemo medication in May, designed to block the hormone receptors which feed breast cancer, but I developed a reaction to it in the form of daily hives. After meeting with the doctor yesterday, I am no longer taking the medication and he sees no reason for me to take anything else orally. Because chemo therapy put me into early menopause and I am no longer producing the volume of hormones that I was prior to my surgery, he feels that I am not susceptible to the hormones feeding any rogue cancer cells. He feels that with the chemo therapy and Herceptin which I have been given, I have every possible chance of remaining cancer free. This was very good news to me,  since the oral therapies given women after breast cancer carry with them some undesirable side effects and risky complications. My doctor believes this is mostly because the field of oncology just doesn’t know what else to do, and the fact that other than Herceptin, there have been no ground breaking breast cancer treatments in the last 30 years. We are still using surgery, chemo therapy, radiation and oral hormone blockers to fight recurrence. Despite all of this, women continue to get new breast cancers at epic proportions.  I am reading and researching what are believed to be the major causes of breast cancer and find it interesting that so much is directed at funding the pharmacuetical companies and their studies but NOT determining and fighting the causes, namely hormones.  That would put a lot of big name manufacturers out of business. Unfortunately beating cancer is very political and financial. 006

At any rate, I am feeling great and doing well, and look forward to celebrating  my one year survival point next month! In celebration, I bought myself a new kayak last week!  I loaded her up last weekend and went with a girlfriend out on the water Saturday! I call her MY SURVIVOR”SHIP ! Now, you may be wondering how I  got that 42 pound boat up there all by myself while Tim was out of town?  With much determination!  Where there’s a will, there’s a way, and I don’t let much stop me anymore…that is one positive outcome in my fighting cancer – I have a new-found strength within.  (In case you’re wondering, I bought Tim a matching kayak too.)  Now when our local marina closes for the season at the end of September, we can still get out on the water and explore the local rivers during peak fall foliage! The leaves are already beginning to fall here in Virginia!

005 I loved what a new friend had recorded on her home answering machine the other day.  After the usual message of “leave a message at the sound of the beep”, she reminded me of this:

The hand of God will not bring you to any trial where the grace of God will not protect you!

New Beginnings

Having cancer has taken many things from me beyond my control.  It has made me vulnerable and helpless at times.  spinning_class3Part of the fight in cancer is to regain something I CAN control, and decide what is right for me. 

I believe everything and every person God brings into my path, in this journey, is His divine intervention.  There are no mistakes with God!  A couple of months ago I met a dynamic woman through my kids’ high school.  She is an 18 month breast cancer survivor and a  shining example of strength and courage to me.  A powerhouse of energy and positive attitude,  I knew I immediately had to know her!  The more we talked about life beyond treatment, I learned from her and other survivors, that lifestyle changes must be made to remain cancer free.  No more free walk in the park, not exercising and eating whatever I wanted to! 

Every study I have read links diet and exercise to lower recurrences or development of all types of cancers.  Even though I have been fortunate to be able to maintian a healthy weight my whole life, and don’t struggle with high blood pressure or diabetes,  which run in my family, my greastest focus NOW is to never go through cancer treatment again.  Ever.  What better time than NOW to seize hold of something within my control while other issues are still out of reach for me (such as getting my hair to grow FASTER)!  I choose what to eat.  I choose where to spend my energies and I choose who I want to become. 

So today, along with my new friend,  bandana on my bald head, I tried a spin (cycling) class at the local gym and guess what?  The instructor is another breast cancer survivor, 8 months further ahead than me, and she has the same oncologist as I do! What are the odds of that?  As I sat on the bike at the back of the room, watching her at the front, with all her enthusiasm and zest for life, tears filled my eyes as I could see light at the end of this dark tunnel of treatment.  I saw that I can raise my head high and smile.  I saw that I can have the body I want to have, or at least one better than what I have now, and that strength will come through hard work.  I have never been one for sweat, in fact I hate exercising, not to mention PAIN!  This would be a very big step for me to take on a lifestyle change like this.  Even two or three times a week of walking around the block would be a huge milestone for me, especially if its hot outside!  But I have to start somewhere, and meeting these two women is like an ah-ha moment for me.  A motivation for change and a new beginning.  Like two angels leading the way, that God placed right in my path when I needed direction.

I’m sure I’ll be barely able to walk tomorrow when I wake up, but in time I hope to feel better and love the body God has given me, glad to be alive.

Pressing on…

heartplant_tcToday is June 1st, 8 months since my breast cancer diagnosis.  Sometimes it seems a lifetime ago and sometimes it seems like just yesterday.  Some days I feel I have survived the worst of it and then some days I feel like I am still fighting.  I have met many breast cancer patients and have found that some call themselves ‘survivors’  from their date of diagnosis and some from the date of their surgery.  I don’t know when I will call myself a true survivor. All I know is that I don’t feel like one just yet.

Maybe that’s because I am still going through IV infusion treatment, spending the day in the chemo ward every 3 weeks, and maybe that’s because I still have very little hair at all, and my fingernails and toenails are rotting, bleeding, and falling off. ( Gross, I know, but that’s the raw truth.)  I escaped to a movie theater a few days ago and got engrossed in the show, forgetting  for three hours that I had breast cancer, only to go to the restroom after wards and find blood on my shirt from my bleeding fingernail.  I wrap band aids around them and try to keep them on.  “This part is taking too long”, I think to myself,  this part of regaining my body after chemo therapy.  And even the therapy I am getting now, though not as toxic as the last four and a half months, still causes me headaches and fatigue and I am scheduled for nuclear heart scans every 120 days to check for cardiomyopathy, a side effect to the drug Herceptin, which I get 324every 21 days.

(Tim and me, out to dinner last weekend, with his parents who came to visit from St.Louis)

On a lighter note, though, I was traveling back from California a couple of weeks ago and in the airport magazine/book store the clerk said to me, “I love your hair color! It is really nice with your brown eyes.”  I smiled and then leaned over to her and said, “I have a dirty little secret to tell you”…and then I told her about my wig and breast cancer.

I thought to myself, I could say “thank you” and go about my business, or I could put a face to breast cancer and let people know that it is not your great aunt’s disease anymore.  It is affecting more women than ever before, in staggering numbers and to people whom you never would have suspected.  Many celebrities have hidden it from the public until now.  The risk factors are becoming more widely advertised and discovered by scientists.

I don’t know what my life after breast cancer treatment will look like, but right now it includes a desire  to let people know that finding a cure, though a great hope for us all, is only one piece in a very larger puzzle of finding the cause.  The more I read, the more I see how our society and foods, and lifestyles play a big role. Now if I could only get myself to make some of the changes that will reduce my risk of recurrence such as daily exercise and eating a large diet of fresh fruits and vegetables! I’d better get off this computer now, and put on my walkin’ shoes!!

California Here I Come!

001 (3)It’s been more than a week since I last posted.  I’ve been getting ready for my trip out to visit my family in California, and the day has arrived!  I will be gone today through the 20th of May.

For over a week now I have resumed most of my daily activities of running a house to include the grocery shopping, cooking, laundry and upkeep, even though I am still anemic.   They checked my blood levels last week and my white cell counts are normal, so not as susceptible to infection, but the red cell count is still low, causing anemia.  I was also catching up on all the back-ordered jewelry orders that had stacked up and then I put my shop on vacation mode – I plan to resume after June 1st.  That has taken a lot of pressure off of me and freed up some time.

I began my “maintenence” Herceptin dose infusions last week, three times the levels I had been receiving, since they are every 3 weeks now instead of every week.  Tomorrow is the first Wednesday since New Years that I have not had to be at the hospital!  That, in itself,  feels amazing!  The only side effect I have noticed is one my doctor warned me of,  and that is a constant drippy nose accompanied by scabs lining the nostrils.  Hopefully those will subside with time as my body adjusts and I get back some nose hairs.  I don’t go anywhere without my Kleenex!

My oncologist denied my request for a manicure, since one of the nails started lifting from the finger and was oozing.  The bleeding under the nails has continued, but I went ahead and painted over them for my trip since they look pretty ugly.  I just can’t have the soaking and cuticle treatment that a typical manicure includes.  I am keeping them short so they don’t get caught and then pull right off – they are tender and still a little numb.

I shaved my legs for the first time in 6 months too!  California is HOT already and shorts and skirts mean no covering up the stubble that is beginning to return.  🙂 Hair is starting to fill in the bald spots on my head, though just grayish colored (ugh) chickadee “fuzz” right now.  I am still sporting a wig when I leave the house, and a scarf or bandanna while staying at home.  I don’t think there will be much swimming pool or beach activity for me this summer!

I signed on to be a “chemo-angel”  to a cancer patient just beginning her chemo treatments….a source of encouragement to someone else and a real place to help me begin recovery as I reach out to  another woman affected by breast cancer.  Channeling my time and energies into helping others will help me from holding my own pity party now that I am going through the post chemo “fall out”.  Nobody warned me of the feelings I would have as I begin to process the emotional after effects of treatment.  And in some respects I feel like I am still IN treatment until the new year, as I go once or twice a month to the chemo room for infusions.  A ‘new normal’, they call it.  All I can say is I just want my ‘old’ normal back, and that is a loss I must grieve over time.  I appreciate your prayers to that end.

‘Til next week!

Koryn