Tuesday, September 15, 2009

An Anniversary, A Remembrance, A Request

It was one year ago, on Monday, September 15th, 2008, at about 2:00 pm that I spoke with a woman from Huntsman Cancer Institute on the phone who answered to my cheery request, "So, do you have good news for me?" "No, I am very sorry, but I don't. Your tests came back positive, you have breast cancer. Two types...." So began the year of amazement for me.

My hours and days and months which followed have hosted a conglomeration of tears, well wishes, prayers, lifting activities, laughs, kindnesses, sacrifices; so many emotions and experiences! I hope someday to be able to chronicle in a meaninful way the love, support, strength, faith, humor, and goodness you have all shared with me throughout this last year; so that others, when wondering what to do for someone they know who is faced with a similar diagnosis, or who faces challenging times of any kind, can look to the example of my people for direction...for indeed, it is you, dear ones, who have set a standard higher than any I could have ever imagined. I honor you.

In order to celebrate my anniversary, I would like to invite you all to join with me in an activity which will infuse your goodness in new directions--you have kindly focused on me for the last 12 months, now I would invite you to extend those endeavors to another who is either a survivor, a care-giver, or a relative of someone who did not win against cancer. The request is this: send a note, place a call, or pay a visit to these folks today, let them know why you are thrilled that they are around, or what influence for good that they have had in your lives. You have overwhelmed me with your expressions of love throughout the last year; it would please me to no end for you to continue to extend this same remarkable love to someone else. I hope that you will celebrate every September 15th, a day which has become in someways my new birthday, with me by doing what you do so AMAZINGLY well...loving others.

Thursday, September 10, 2009

Excavation Zone

Yesterday I went in for my "chest excavation" project, as I was calling it...removal of the dreadful expanders and port-a-cath... wooooooohhooooooo!!! You have heard of weights being lifted off your shoulders, well, mine was a weight lifted too, just down a little from my shoulders. Instead of carrying around the heavy bricks, I now have light-weight silicone. While I am in some pain, I can already tell that life without the bricks will be blissful. The surgery lasted just over an hour, we started around 8:30 and I was home around 4ish. He didn't put any drains in, so I don't even have those to worry about.

All in all, I think this was a great success! I am at my mom and Alan's home, in the recovery suite, and will be here through the weekend. I plan to be at work on Monday. My main restriction is to not lift anything heavier than 2lbs....hmmm...I think I may have already violated that just a little in getting my laptop on the table.

Slowly but surely I am coming to the end of my surgically eventful year. As an update on my lower extremities, my left foot neuroma surgery I had done at the end of July is healing nicely, though it is still tender, and it will probably be a second or two before my foot adjusts to the numbness, but at least I don't have the feeling that a nail is stuck in my foot there any longer...a very good thing.

The right ankle/foot is doing alright at this point. I am relegated to wearing shoes with a slight heel so as to relieve the pressure that walking in flats puts on the joint. A heel opens the joint, whereas the flat shoes really pinch and close it down on the front part of the ankle. I am still hoping for a miracle cure for it. I have an apt. with the Dr. on the 24th of this month, and we will make the decision then. If I do go for the surgery, then I will schedule it immediately following a work-related conference ending on the 21st of October. So, the joint has until then to shape up :)

With all that, it makes only two more possible surgeries to complete by the end of the year: the right ankle fusion/foot osteotomy, which would be in late October, and which would make me non-weight bearing for 8-12 weeks; a big and life-changing event. The last,a little follow-up cosmetic surgery to put the finishing touches on the excavated chest area.

I am thrilled to be on this side of the 5 surgeries I had looming ahead of me in June. This certainly won't be a year easily forgotten, nor should it be. I have learned much from so many of you, and experienced so many wonderful and meaningful things with you. Thank you, as always, for your uplifting prayers, thoughts and good wishes...they have made all the difference.

Thursday, June 25, 2009

Foot Surgery Update

I know that this blog is technically for tracking my progress with breast cancer, but since many of you are kindly interested in the on-going surgery saga, I thought I would post a little note regarding my latest surgery this week. Most of you are aware that I was scheduled for a major foot and ankle surgery for September 16th, 2008...a day after I was diagnosed with breast cancer. Needless to say, I put off the ankle to concentrate on the cancer, and now that treatment is complete, it was time to come back to the foot.

I had surgery two days ago with the hope of being able to "glue" my broken talus (anklebone) together with bone grafts from my knee. I knew that I would look to my knee first after recovery to see if the surgery was successful...it would all depend on the state of my ankle bone and whether or not it was healthy enough to work with. I woke up and had no bandage. My sweet mother was left to deliver the bad news, along with one of my doctors on a phone call that there is a real mess inside my joint. When they pressed on the bone, "it was soft--akin to the top of a pie crust coming out of the oven" was the dr's quote.

So what now? I had a follow-up visit with my dr. today, and he said that he cleaned out a bunch of damaged cartilage and trimmed things up as best he could, and now there are three possible outcomes:
1- Some people (about 20%) have a kind of miraculous healing...scar tissue can take the place of cartilage and fit in between the bones, and life is pretty happy and painless. I will know in 2-3 months if such healing is taking place.
2- A cadaver part could be sought, with the risk of it carrying some disease that they currently don't test for (e.g. 20 years ago they didn't test for AIDS) and there is a possibility of infection, etc. This could take a while too, as a good match would have to be found, and my joint may still not be in good enough condition to take the new bone.
3- Fuse the talus to the fibula at a 90 degree angle which would severely limit my up and down motion of my foot. Most likely I could learn to walk without a limp but it would be unlikely that I would ever run again. Ankle fusion is considered the last resort in "fixing" ankles, but it would most likely get rid of the pain. While they do ankle joint replacements, it is a once in a lifetime option, and they typically fail in 10-15 years, which makes it impossible for me, as I am "too young and active" for a joint replacement.

As you can imagine, I think option 1 sounds the best. I also think this is a perfect opportunity to petition the heavens for a miracle. After all, as Mormon says, "Have miracles ceased? Behold I say unto you, Nay: neither have angels ceased to minister unto the children of men...they are subject unto him, to minister according to the words of his command, showing themselves unto them of strong faith and a firm mind in every form of godliness." While I find my dissapointment to be high and my endurance to be low at the moment, I cannot and will not let these slings and arrows overcome me.

And so, dear friends and family, I would invite anyone who wishes to join with me in a special day of fasting and prayer for a healing of my ankle/foot to do so on Sunday, July 5th. I will also be asking for a blessing of healing from the priesthood holders amongst my family and friends. I figure I may just as well be part of that "miraculous 20%" as anyone else, and if God would like me to ask and work for it, then I will...and enlist the faith of you dear ones, as well.

In the meantime, I am healing well from my "mere flesh-wounds" surgery (scope entries and removal of old hardware) this week, and expect to be back at work on Monday. I am staying in the guest recovery suite on Sandalwood with my ever-attentive mother and Alan seeing to every need. Thanks to so many of you who have sent lovely bouquets, well wishes, and cheery calls...as always, you lift me up. gf

Sunday, May 24, 2009

The End of Treatment and Race Day

It is hard to believe that it has been two weeks since the end of my last radiation treatment. My skin is healing and I am gaining more energy everyday. My dear co-workers threw me a little celbration party which included a DELICIOUS cake made by Janet Howard.

The Race for the Cure was a wonderful experience with dear friends and family. I rollercoasted between laughing out loud at the hilarious sayings on tee shirts to getting teary-eyed at the "in memory of" signs on people's backs. Wearing a pink tee shirt myself this year was also a different experience; it made me part of the club, with feelings positive and negative. I heard a number of "congratulations", "good luck", "way to go" comments. It was also clear that I have now survived the number one killer of women, and that this will be a life-long fight...very sobering. It was so heartening though to see the amazing network of support which is available for every woman and every friend or family member of those who have been touched by breast cancer. It was a lovely day all the way around and the weather was perfect. My sweet doctor, Dr. Buys ran into me...literally, she was running the 5K as we walked the mile. My sweet mother made the mile (and all the extra walking to and from) with her very sore hip. It was a victory day indeed.

Sunday, April 26, 2009

Signs of Spring

A wise gardener carefully prunes the vine to make possible a greater rebirth come spring. The wisest of all gardeners took shears to my vines last fall. Since then, I have felt in close harmony with mother earth and her offspring of trees, shrubs and flowers; who at the end of the harvest gathered to herself her decorations which in summer and fall produced colorful shows and delightful fruits. As the weather turned cold, every living entity followed the ancient pattern of gathering in unto itself, instinctually sending remaining nutrients to its roots.

I too gathered in unto my roots that which was nourishing and sustaining; love, friendship, and faith. Meanwhile the destructive shears of poisonous treatments hacked away at my decorations, leaving a scattered mess of fallen hair, bulging body and scarred flesh lying wantonly at the base of the once thriving vine. The winter snows continued to cover my ground, nevertheless, I was sustained by the hope of renewed and regenerated growth and health—the promise of spring.

It has been a long winter here in the West; so too has this winter of trial been long, but spring has finally arrived! With chemo completed and only 8 more radiation treatments to go the sun is warming my roots and branches and my rebirth has truly begun.

The radiation treatments have been a daily affair; every morning from 8:00-8:30 I spend time on an x-ray table nicely cradled in a custom form with my arms and hands above my head while the serious machinery is lined up with my new tattoos and then shoots beams of deadly rays into the upper right quadrant of my body. Every other day, I get what is called “fancy wear” placed on me, a golden mesh of metal known in the biz as a “bolus” which apparently conducts the rays faster, deeper into my body. I didn’t notice any real side affects aside from fatigue during the first half of the treatments…but they warned me that the radiation builds up and that I would start to see red, sore, and possibly blistered skin in the second half. And so it is. I am reduced to giving careful hugs and slathering my body with Aquaphor and monitoring my activities so as not to wipe myself out. This has been a challenge; I have spent more Sundays in bed recovering after an active Saturday, and if you really want to hear a sob story, ask me about my attempt at a swim workout. J I feel like a kid at the end of the school year, anxious to remove the confines of the schoolroom and feel the summer sun on my face.

Speaking of sun, I have a week of tropical sun scheduled in June. I will be going to Maui with my angel mother and her dear friend Chris, and possibly my dear friend, Dayle. Chris has a condo time share which she has graciously offered to us and I was able to use my miles to purchase a ticket. What a wonderful treat to look forward to and a lovely boost to body and spirit. I will most likely spend the majority of time lounging on the sand or snorkeling in the water; even though I understand that there are lovely sights to see if one heads off in jungle paths. While this would usually really appeal to me, it won’t be an option on this trip because…

Many of you know that I was diagnosed last September 15th, a day before a scheduled major foot and ankle reconstruction surgery. Well, first things first, the life-saving treatments were moved to the top of the priority list, and the foot and ankle were postponed until later. One can live with a broken ankle, but only for so long. So, I have decided to “slip” in this surgery between the end of radiation and the reconstruction surgeries slated for sometime in the fall (the skin has to have time to heal from radiation). A week after I return from HI, on June 23rd, I will go in for surgery. The status of the outcome is still unknown, as it was last fall; the dr. will start out with a scope to determine the health of my ankle joint, and if it is healthy enough, he will take bone and cartilage grafts from my knee to “glue” the cracked talar dome back together, (this is the top part of your heel bone where it meets up with your leg bones). And since he is making a mess of things, he will fix the bad carpentry of a previous surgical attempt to flatten my arch by re-breaking my first metatarsal and repositioning it…hopefully resulting in my weight being properly distributed to the ball of my foot rather than the second metatarsal head, which is the current state. If on the other hand, the joint is not healthy, he will remove the scope and we will have to wait for a cadaver donor with a good joint match and then start the surgery again. I pray therefore, that my joint is healthy, as the second option is not only more complicated, but who knows when it will happen. I am scheduling short-term leave again with work and hope to be out only a couple of weeks. My desire to walk someday without pain is strengthening as treatment for cancer ebbs.

Speaking of walking, another fun activity I am looking forward to is participating in the Susan G. Komen Race for the Cure. I have done this a number of times in the past, but I think this year will be a little different for me… I will be one of the women wearing the pink t-shirt and perhaps my name will be on someone’s tag of “in celebration of”. It is always an emotional (in a good way) experience, and I am looking forward to participating in it with friends and family. For any of you who may want to join, it will be held on Saturday, May 9th, at the Gateway. Registration is still available on-line. The nice thing about this event is that you don’t have to be a runner; you can walk a mile, or run or walk the 5K. I will be walking the 1 mile, unless the ankle is feeling super that morning, and I may attempt to go the 5K. Nonetheless, the experience of being there is one I eagerly await. http://race.komenslc.org/site/TR?fr_id=1000&pg=entry

Indeed the sun is shining down on me; my exposed cuts from the pruning shears are seeing new growth. The hair on my head is keeping pace with the blooms and buds of the trees. I have felt my roots sink deeper in the soil of faith; hopefully the fruit of my future will be more abundant and flavorful. The master gardener has seen fit to cut me down a bit to spruce me up. I only hope that I fulfill His vision of my future beauty.

For winter's rains and ruins are over,
And all the season of snows and sins;
The days dividing lover and lover,
The light that loses, the night that wins;
And time remembered is grief forgotten,
And frosts are slain and flowers begotten,
And in green underwood and cover
Blossom by blossom the spring begins.
Algernon Charles Swinburne

Wednesday, March 11, 2009

Houston, We Have Lift Off!

That is lift off from the Chemo IV! Tuesday, March 10th marked my last of eight chemo treatments...and I am thrilled to have reached this milestone! This last treatment so far, has been the easiest of them all, as I didn't need to get the really expensive and painful Nulasta shot...which really contributed to the muscle/bone aches.

What next? Radiation therapy. I will meet with my radiation oncologist, Dr, Gaffney next Wednesday, and will most likely get "tatooed", so that the computer knows where to shoot the radiation beams. Probably a week after that I will start the 5 weeks of treatment, which means I go in every day M-F for about 10-15 mins and get zapped.

I also met with Dr. Agarwal, the plastic surgeon and reviewed my options, and he confirmed that it we wait at least 6 weeks before considering any reconstruction, the skin simply has to have time to heal. Dr Buys also took me off the bone-strengthening drug, as my ankle seems to have really flared up since I have been on it. I may start that up again, but I am taking a couple weeks off to see if it makes any difference. Speaking of which, I may try to get the foot/ankle worked on after radiation, the Docs all agreed that it would be a good time frame.

As I pass from phase II to III of the journey, my doctors gave me a little heads up that many patients feel that they are not doing enough to fight the cancer once they complete chemo, and so become a little distressed. While it is hard to say preemtively how I will feel, I have always viewed this as a process, and that one day it will come to completion and that I will go on with my life. It will never be quite the same; hopefully I will have experienced some growth (and no...not just the growth happening by design!) but that I will be a little more filled with faith, compassion and understanding. I hope not to live with a fear of metastasis, but just a calm and careful watchfulness tempered by peace.

While I will continue to meet periodically with the doctors and nurses at Huntsman, my goodbyes on Tuesday were a little bitter-sweet. I have come to love and adore each of my care givers, and while I didn't look forward to treatment, I always eagerly anticipated meeting with them. I don't know if there is a better group of folks fighting cancer than those at Huntsman! Following are some pictures of these fabulous people:

Dr Buys

Janet Bloch-NP

Nurse Vicki

Port Access Nurses Michelle and Majda

The nurses in infusion

With the port accessed

Wednesday, February 25, 2009

The Latest Update

Yesterday marked my 7th of 8 Chemo treatments...I was so excited to go in, as it just means that I am getting sooooo close the end of them! It was made doubly fun because Aaron accompanied me! He was so kind to fill in for my mother who had to take Alan to the knee surgeon for a follow-up. I am sure though, that there are many folks who look forward to the end of their sessions much more than I, as really, the treatments, while not fun, have been fairly easy to tolerate. I know that the amazing medical care, drugs, and precautions nurses and doctors take all have an impact on how well they have proceeded. However, I am FULLY convinced that the prime reason for my well-being throughout has been the love, prayers, faith, well wishes and good thoughts sent my way throughout the ordeal. I live as a daily miracle, for which I am ever grateful.

There are a few other interesting updates. I have officially enlisted in study S0307, "Phase III Trial of Bisphosphonates as Adjuvant Therapy for Primary Breast Cancer" That's a mouth full :) Basically, if you have seen the comercials on TV with Sally Fields for Boniva, a drug that is helpful in combating Osteoperosis, it is the same class of drug. The idea is that because breast cancer, if it develops matastesis, will often go to the bone, let's try to strengthen the bones first as a shield to preventing that metastesis. Trials have been going on in Europe for a while, and have shown really positive results. For anyone interested, here is a link to an article from the NYT on it. http://www.nytimes.com/2009/02/12/health/research/12bone.html?_r=2

Some of you may remember that I had attempted an MRI on my hand/arm to determine the cause of a pesky, persistent numbing of my left little finger and half of the ring finger. Having metal in my chest prevented that exam, so instead my doctor sent me off to a neurologist to get a nerve test. That showed that my ulnar nerve is pinched around the funny bone, but it has not caused any permanent nerve damage...at least so far. He likened it to carpal tunnel syndrom, and just told me to try to keep my arm straight and keep on the look out for atrophy in my hands...ok. I am hoping that as I get back into yoga and other exercise, it will somehow unhitch and all will be normal.

One last tidbit, I am now moving into phase III--radiation, and looking ahead at reconstruction surgery. My assumption was that I would be able to move right into surgery immediately following the completion of radiation...but it is not to be. I have to wait 3 months at least from the end of radiation, as the skin continues to change and heal, and so it will be at least August before reconstruction can start. I am now thinking that perhaps I can then squeeze my foot/ankle surgery inbetween that 3 month time frame? I will chat with Dr. Buys to see if there would be anything preventing that, and if not, I will be contacting my ankle surgeon and hopefully get that scheduled. Of course, I have to work around work, so more on that to come. Perhaps the name of this blog should have been "All you ever wanted to know about Gretchen's medical problems and more". I promise this blog will have an end someday :)

As always, many many many thanks to you all for your lovely gifts, cards, services, prayers, faith, lunches and laughs...you make my world brighter than you will ever know. What a joyful ride this has been because of you! gf