Indianapolis Komen Walk -- April 18, 2009

For the second year, I'll be walking in the Indianapolis Komen "Race for the Cure."

To sponsor me in this race, please visit my race page:
http://race.komenindy.org/site/TR/Race/General?px=1212504&pg=personal&fr_id=1060

On May 30, 2009, our whole family will be walking in the Detroit Komen Race. If you would like to specifically sponsor Paul or one of the boys for that race, I will be posting links later this month.

Blessings,
Joan

Walking on Air!

The title of my blog is "Walking on Water."

Today though, I am walking on air because my bone scan and my CT scan came back with NO evidence of metastatic disease! In laymen terms -- I am cancer FREE!

God is sooooo good! And we all are sooooo relieved!

Praise God!

Finally, Some Good News

Paul and I saw my plastic surgeon and my infectious disease doctor yesterday -- both agree that my wound is essentially healed and should not require any "clean up" surgery! Good news, indeed!

I am sorry that this posting comes so late -- yesterday was a busy travel day, and Liam is home from school with a high fever. Hopefully it is a 24 hour bug?

Today I have my bone scan and CT scan. Hopefully we will get as good of news from those tests as from my docs yesterday.

Cheers!
Joan

It's That Time Again

It's time for me to get a few tests done and make some decisions.

On Tuesday, March 3, I will have a "routine" bone scan and CT scan. The purpose of this is to look for cancer in other parts of my body -- not because I am symptomatic, but because that is the routine for cancer surveillance. I'll meet with the oncologist here in Midland the following Tuesday to get the results. I feel comfortable with the CT scan, no worries about any cancer in my lungs, etc. The bone scan is always a worry -- is the ache in my bones from past chemo, new cancer or just old age? I'll know in about a week.

After I get good results from these scans (I'm expecting it, so I'm going to get it!), I plan to follow up with my radiation oncologist -- to specifically discuss the risk/benefit of these tests versus the "routine" exposure to radiation, contrast solution, etc.

On Monday, March 2, I have follow-up appointments with my plastic surgeon and infectious disease doctor. The ID doc wants me to have another surgery to remove excess scar tissue from previous surgeries. Her logic is that the scar tissue could be a home for the bacteria that I've been fighting. But, one friend recently asked me: "Won't that just cause more scar tissue??" It is the proverbial "chicken/egg" type of question.

Paul and I are opposed to more surgery -- the more they do to me, the more things seem to get screwed up. Less is more. If it ain't broke, don't fix it. That is our thinking. We have also become convinced that this bacteria was introduced to my body in May 2008 when I had my surgery. It is a long story, but as we learn more about the bacteria, it makes oh-so-much sense to us.

On a holistic, kind of "out there" note -- I have been doing some reading about the bacteria I have had (pseudomonus aeruginosa; think Brazilian model who died), and I have found that Manuka honey has some wound healing properties AND is effective against the bacteria. This is New Zealand research that does not benefit U.S. pharmaceutical or insurance companies so (surprise!) I've never hear about it from my doctor.

But, I have ordered some, plan to use it on the wound that still exists, and hopefully it will heal completely and be gone. The wound is almost healed, and is showing no signs of infection. This is why I'm willing to try something unconventional. I am grateful to conventional medicine -- it has saved my life -- but sometimes I think medical science looses track of the person inside the patient. They are quick to order tests, surgeries, and treatments. They mean well, and they often do well. But some times, a person has to draw a line in the sand and responsibly try other options. That is what I'm doing with the Manuka honey.

In the mean time, please pray for these tests (bone and CT scan) and my doctor visits. I so want this cancer experience to be behind me!

Cheers!
Joan

A Small Bump in the Road

It has been a while since I posted.... It is odd because I created this blog to keep friends and family updated on my treatment. For the most part, that is over and so I have not been posting updates. But we've had a small bump in the road -- my infection is back.

Earlier this month my oncologist said he was not as worried about the cancer as he was about the infection "coming back." He warned me what to watch for, and sure enough, on the day that I was to see another doctor anyway, I had just the symptoms we discussed. After a culture of the wound, it was confirmed that the infection is back.

Yesterday I drove to Detroit to see my infectious disease doctor. She is convinced that the infection is localized to the wound, that it never really all went away, but that oral antibiotics are sufficient to treat it. If the wound heals completely, then we know the infection is gone. If not, the next course of treatment would be to surgically remove tissue from the wound, in hopes of getting all the infection. (Sounds oddly close to cancer treatment, if you ask me).

I have to watch for fever and/or chills. That is a sign that the bacteria is on the move and that more urgent treatment is needed (think Emergency Room). I've been feeling fine, so I am not worried. My immune system is stronger than in October, and my doc has a plan of attack. God willing, this stupid wound will heal, stay healed, and I'll be back on track to good health.

Last Update for a While?

Good news from my Beaumont oncologist yesterday -- all of my blood components are back in the "normal" range! That confirms that my body reacted badly to the chemotherapy (bad news) but that it is bouncing back (and maintaining) on it's own (excellent news!).

And with that, I move from being a cancer patient back to being a cancer survivor.... I'll have check-ups every three months, and also a bone scan, CT scan and breast MRI in the spring.

The hardest thing for me will be to "exhale" and relax between now and those scans.

My mantra is to tell myself, "Everything is fine today. Enjoy. Tomorrow will take care of itself." That kind of mindset is easier said than done, but it is something I am determined to pull off. Prayer, meditation, housekeeping, good diet, exercise -- all things that I believe will foster an "internal calm." Today, post-Christmas clutter, I am working on the housekeeping aspect! :)

Many folks have suggested a celebration because my treatment is finished.... To be honest, I'd rather just "exhale" and move on with my daily activities. Cancer has become a way of life at our house, not really something with a beginning or an end. It will be a long time before anyone in my family will be confident enough that the cancer is gone to "celebrate." So, lets just help each other remember to laugh and smile and celebrate each day. Our family needs that, and probably to some degree, so do you!

Thank you all for your prayers and cards and meals and gifts and good wishes and... This has been a very hard year, but I am lucky to have my health again and to have the love and support of so many friends and family. God bless each of you!

Grace and peace to you from God our Father and the Lord Jesus Christ. I thank my God every time I remember you.

In all my prayers for all of you, I always pray with joy because of your partnership in the gospel from the first day until now, being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus. Philippians 1:2-6

I Forget How "Un-Normal" Cancer Treatment Is

I suppose I should begin this post with an apology....

The idea of getting a blood transfusion is so "normal" to me, that I didn't realize people would be so concerned about me during and/or afterward. I should have posted an "I'm alright" update after the transfusion on Friday, but I am a "no news is good news" kind of gal. Many people have asked how I am doing (probably many more wonder but are too shy to ask), so I apologize now for not giving a quicker update!

The transfusion itself went fine. It was done as an out-patient procedure at the Infusion Center at the Midland hospital. The only complaint that I have about the process is that I was there from 9:30 a.m. until 4:30 p.m.. The transfusion itself only took about 4 hours -- most of the other time was spent waiting...

The Infusion Center is set up so that each person has their own private area (separated by curtains) for treatment. Each chair faces a serene, wooded area (very pretty with the new snow), and each chair also has a portable television for your viewing pleasure. This is all wonderful when you are getting treatment. The downside is that your back is always to the nursing staff, so you have to work to make eye contact and to get their attention to remind them that you are still waiting for treatment. I didn't mind the waiting in the morning, but as afternoon drew near (and I had commitments with my kids), then I became more impatient.

The infusion did make me feel better. Not immediately, but today (Monday) I can tell a difference. I can climb a single flight of stairs without feeling like my heart will pound out of my chest. Generally speaking, I feel more energetic and more like myself.

My next blood draw will be this Thursday, December 18. I am hopeful the blood numbers will reflect how much better I am feeling.

I also want to clarify that a problem with my blood (i.e. leukemia or the like) is a possibility, not a given. Again an apology if I scared with you with that bit of news....

It is something I mentioned for prayer support, but I have not been diagnosed with anything new.

My Beaumont doctor does not think I have a blood problem, and his opinion is very reassuring. His observation is that my body has had to put energy into rebuilding my platelet count (which is normal now and, according to him, is the most important component of blood health) such that I have not had the energy to rebuild the red and white blood cells (which, he says, always take longer to return to normal).

So, I am "realistically worried" -- not moping about it day to day, but definitely will feel better in the next few months to see my blood levels return and stay at normal range.

The New Year is approaching and I will be GLAD to say good-bye to 2008. It has had its good moments (a family trip to Orlando, Shane/Tyler going to Montana with church), but overall it has been a stressful, worrisome year. Here is to looking forward to a much more healthy and peaceful 2009!