Blog Archives - iwantmorethanapinkribbon

New treatment plan

8/29/2013

I met with my medical team today and I started a new treatment plan. I am now taking an aromatase inhibitor, Letrozole. There is a wide range of success with Letrozole, ranging from the average of seven months with no progression to five years or more with no progression and lots of regression. It is my hope and prayer that I will be in that latter group! Letrozole is a daily oral tablet. I will continue to receive monthly bone strengthening injections.

My biopsy results revealed that there is no change in the cancer receptor statuses. That was good news.

The tissue has been sent to the clinical trials lab for classification. I will have scans in three months or so to determine how the Letrozole is working. If it is not working, then I will most likely transfer over to the clinical trial. If it is working, then I will stay on it.

I also got the paperwork to have my blood work taken at Stanford rather than up in San Francisco. It's helpful that I get the labs prior to my monthly appointments, but it's not helpful for me to take two trips up there. Stanford will send the results to UCSF.

That's about it! Still rejoicing to wake up every day. It really is a gift to do so. The kids are settling into routine, but there's always room for improvement. Rachel has joined the cross country team and Michael is part of a soccer team. I'll join the ranks of "soccer moms" next week as he starts his twice-a-week practices and weekly games. Rachel has cross country four times a week with weekly meets. I'm already tired! :D

Art continues to work hard to provide for us. We are looking forward to enjoying a three-day weekend with him.

I am teaming up with a group known as Soul Food Family in providing outreach to visiting Chinese scholars at Stanford University. Currently, I'm working (in conjunction with another woman) on an orientation workshop and then hope to help facilitate a weekly English corner. I'm looking forward to this quite a bit and hope my energy levels remain high.

In summary:

Please pray that the new treatment plan, Letrozole, will have long term positive effects.
Please pray that I have minimal side effects from the Letrozole.
Please pray for us as a family as we juggle extra-curricular activities along with dinner planning and homework. We don't want to lose our focus on God.
Please pray for the Soul Food Family outreach to visiting scholars from China as the autumn semester kicks in at Stanford.

Thank you for walking with us.

The day after ...

8/24/2013

It's been over 24 hours since my bone biopsy and I'm feeling fine. Since I've always had pain at that particular point in my back, it's only slightly increased due to the biopsy. On a scale of 1-10, it's maybe a 2. No ibuprofen needed today.

I have finally finished writing out the book of Leviticus! It took me 86 days and 105 pages and at least two pens. I also studied King David's life this summer, going through First and Second Samuel (but I haven't written those out yet.). I have only a couple of pages left in that particular study and should be done by Monday.

The Old Testament books can be quite troubling, especially when dissected word for word. There's so much I don't understand. I've decided that I may have my tombstone say something like, "Ahhh, so *that's* what that means!" or "Now, I KNOW!"

On to the book of Numbers. I've often claimed to be one who likes numbers in general. I wonder if that will remain true as I write out these records!

Have a great weekend. May you find true rest in HIM.

Bone biopsy completed

8/23/2013

Many thanks to Cynthia Segelke who drove me to San Francisco today and hung around to take me home!

Today, I had a CT-guided deep bone biopsy done on my posterior right hip. Basically, right beside my spine. I was surprised this was the area they wanted to get tissue from as none of my scan reports mention much activity there. Because I process things visually, I asked to see the scan with the lesion! They rolled the monitor out and showed it to me and explained how it would be easier to access this particular lesion. What was interesting to me is the fact that I have long felt pain in this particular spot (nothing too major), but always associated the pain with nerve pain from the spinal lesions.

Lots of lidocaine, but it did still hurt at times. Nothing too unbearable and definitely not the worst pain I have felt. They got two "good" tissue samples and one "decent" sample. It's now about nine hours after the procedure and I just took two more ibuprofen for the ache.

It's important to remember that the purpose of this biopsy is not to determine if I have cancer or not. We already know that I DO have cancer which means there are no "good" results. The purpose is to get a clearer picture of the cancer in order to put together the best treatment plan for what's happening in my body now. I will meet with my oncologist on Wednesday of next week to get the plan finalized.

Both kids started school this week and so far, so good! Michael's transition to middle school is going well and Rachel is enjoying 8th grade. Their sports start up full force the first week of September. Rachel will be doing cross-country and gymnastics and Michael will be playing soccer.

May God's grace be upon you all, no matter where you are on your journey.

Thank you for sharing our journey.

Trial update and bone biopsy

8/20/2013

Our family enjoyed a vacation to southern California where we went to Knottsberry Farm (an amusement park) and attended a wedding of dear friends. It was a nice way to end our summer. The kids go back to school this week!

On Friday, I received a phone call telling me that the clinical trial finally opened! Good news! However, they also told me that it would take 3 - 4 weeks to process the tissue from my upcoming bone biopsy! This is very frustrating information as I had been told 3 - 4 days, not weeks. To be quite frank, I can't wait that long for another treatment plan.

My oncologist is trying to get things clarified and see if we can start the trial without my tissue being classified (placing me as a wildcard until the results are in), but we're not that hopeful that this will happen. I will meet with her on Thursday and I will most likely start a different treatment plan then.

My deep bone biopsy is scheduled for Thursday morning (Aug 22) at 9:30 a.m. I will also get my bone strengthening shot that day.

I'm on the last chapter of Leviticus and the last chapter on the study on David. Biblically speaking, it's been an intense summer!

In summary:

The clinical trial opened, but there are still scheduling conflicts. The decision regarding my treatment will be finalized on Thursday.
Deep bone biopsy on Thursday at 9:30 a.m. Please pray that a good tissue sample is obtained with minimal residual pain or side effects.
The kids start school this week. Please pray for them as they transition into the new school year. They will both be in middle school which is very helpful for scheduling.
I continue to desire to pursue after God with all my heart. I want to be authentic and at times, I fear and wonder if "I'm faking it."
Please continue to remember Art as he faithfully provides for us. He works hard and we love and appreciate him.

Bone biopsy postponed

8/13/2013

Thank you all for remembering me as I prepared for my bone biopsy tomorrow. I just received a phone call and the biopsy has been postponed until next week as it was scheduled on a day when there is no neuroradiologist available to do the procedure!

All of my appointments for the day have now been postponed so that I don't have to take an extra trip up to San Francisco.

So far, the clinical trial is still on target to open on Friday. Of course, it's only Monday so there's still plenty of time for it to be postponed as well! :D

However, my trust is in God and my hope is in his using these things to work things out for good.

I'll keep you informed.

Upcoming biopsy

8/11/2013

Art and I just returned from a night away in San Francisco. This is the first time we've had a night away for fun for quite a few years. We enjoyed a bed and breakfast gift from my sister and her husband. We walked the streets of San Francisco and they are still hilly! We walked a total of 3.75 miles, but I rewarded myself with a single scoop of butter pecan ice cream with butterscotch topping at Ghiradelli Square! In fact, we both took a 24-hour break from the structured food plan we follow and we enjoyed ourselves quite a bit.

As we were leaving on Friday, I received phone calls telling me that I have to return to San Francisco on Tuesday for an "Image Guided Muskuloskeletal Biopsy." In simpler terms, it's known as a "CT Guided Deep Bone Biopsy." It's an out-patient procedure involving only local anesthesia, so while I will have to remain in a recovery room for a couple of hours for observation, there are no major concerns about this procedure. I will have to be in SF by 11:00 for blood work and the procedure will be at 12:00. I'll be released by 3:30ish at which time I'll then meet with my main medical team in the oncology department. At 5:00, I'll get my monthly injection of the bone strengthening drug. Does anyone want to come with me for a not-so-glamorous-day in the city to keep me company?

The reason for the biopsy is to get an up-to-date analysis of the cancer. While we have the pathology report of the original tumor, it's not unheard of for cancer to change characteristics as it moves around the body. Additionally, the biopsy is needed to help determine my classification for the upcoming clinical trial that I'm being considered for.

That brings me to a clarification. When I last wrote, I reported that the protocol director for the drug company said, "She's in," in response to my gestational diabetes excluding me. I meant just that . . . that my medical history of gestational diabetes wouldn't keep me out of the trial. However, I still need to go through the full screening process when the trial officially opens. In addition to having a new biopsy with recent information about my particular cancer (which will help us plan future treatments), if the trial opens on Friday (as hoped), then we will have tissue ready to send to the drug company for classification.

Summary and prayer points:

Praise for a great week for the kids and a great celebration of love and marriage for me and Art.
Prayer that the biopsy goes smoothly and that the neuroradiologist will be able to get a good tissue sample.
Prayer that the clinical study opens as scheduled on Friday, the 16th and that everything I need to be included in the trial is in place.
Prayer that the cancer has been stable during this month off treatment. I will be having more scans to give us a clear picture of what has happened in this time frame.

Still waiting

8/7/2013

I am now on Week 3 without any treatment. This was rather unsettling until I heard that the clinical trial needed a four-week-washout of no treatment. That settled me down a bit.

The last time I wrote, I mentioned my gestational diabetes history being a possible block to my participating in the trial. At first, the protocol director at the drug company said, "Absolutely NOT! She cannot participate." My oncologist went to bat for me and said, "This woman had gestational diabetes 12 years ago. Her blood sugars are of no concern and she should not be excluded based on something that was over a decade ago." Protocol director: "Okay. She's in."

Wow! Praise God!

But . . . still waiting. The definition of protocol is, "The established code of procedure or behavior in any group, organization, or situation." (dictionary.com) The very nature of "protocol" can be fraught with bureaucracy beyond belief. Because clinical trials are very closely monitored by the Food and Drug Administration (FDA), exact procedures must be followed in order for them to be accepted.

Without going into painful detail, I'll just say that the trial start was delayed last week til today and today, it was delayed again. The new target start date is August 16. My oncologist has emphasized how important this is to get the trial started by then because I will have completed the washout time period and she doesn't want those four weeks to go to waste.

If that's the case, I will go through the complete screening the week of the 19th and most likely start the treatment the week after.

However, if the trial does not open on the 16th, then I will start a different treatment (Letrozole) the week of the 19th. I will still need to repeat my scans as they'd like to know what has happened during this month off treatment. That will help them gauge the speed of the cancer.

When I came from Hong Kong, I brought my tissue samples with me for repeat pathology studies. I received a phone call today telling me that the pathology lab returned those samples to Hong Kong! There are no blocks or slides with samples of my cancerous tumor. This means that they are going to have to try to get a biopsy from one of my bones. This can be somewhat difficult to do and a new member will be added to my medical team: a neuroradiologist. If the neuroradiologist doesn't think it's feasible to get an adequate bone sample without too much risk, then they will try to enter me into the study as a "wildcard." Don't ask. I really can't explain it!

So there we are. Still waiting.

In summary:

Plan A is for trial to open August 16 with complete screening the week of the 19th and for treatment to begin the week of the 26th. There is a possibility that I will have a bone biopsy (which can be painful) sometime before then.
Plan B is to start a different treatment the week of the 19th should the trial not open on the 16th.

Prayer points:

As always, we continue to ask for God's healing. I am still working on my thoughts on miracles and waiting on God, but let's just say that I am excited about my future, no matter how long or how short it may be here on this earth. God hasn't given up on me and I haven't given up on him. My faith in him is not based on whether or not my cancer is healed. My faith in him is based on the fact that he is God, my beloved Redeemer.
I'd like to participate in this study (God willing). Please pray that things work out to do so.
I have much praise that I am in little pain and that I am able to pretty much live a "normal" (whatever that means!) life.
The kids are doing great and are currently at Middle School Church Camp. Art and I are having a much needed get-away on Friday and Saturday while they are gone.

As always, thank you for walking alongside us during this journey.

Crash course continues

8/3/2013

I always like to know what I'm getting into. Once I knew the name of the clinical trial, I researched as much as possible everything I could about it. It's listed on the clinicaltrials.gov site and there are quite a few details about what can exclude a patient from participating in the trial.

One of those exclusions is having a history of gestational diabetes. Oops. That's me . . . not once, but twice and both times, insulin dependent. I sent an email to the clinical trials coordinator letting him know of this detail so that we don't waste time/energy/resources on screening me only to find I'd be excluded based on this.

He talked to my medical oncologist (who is also the lead investigator for this study) and they had to send the information for clarification to the company who is the study sponsor. (The company is the one who makes the experimental drug.) We are now awaiting their response.

The study is not only for breast cancer patients, but for those with advanced solid malignancies, regardless of location. It's possible that this exclusion is for a different type of cancer, but we will have to wait and see.

Please pray that we receive a quick answer from the study sponsor. If I am excluded from the study then that means that I will start a different treatment as soon as possible.

Crash course in clinical trials

8/1/2013

Whew! If you think it's been hard on you to not know what's going on, just imagine how hard it's been on this end! While I'm not a naturally anxious person (Praise God!), I have felt my anxiety levels rising in this time of limbo-land.

I stopped my last treatment plan on July 17. I had been on that medicine for seven months and yes, I had some "detox" symptoms. The most noticeable one was heightened emotions and increased weepiness (Is that a word?). Crying is not my most comfortable state of being.

The neurosurgeon says that while I have increased lesions in my bones, that they look good and do not show any signs of fracturing. This is really good news. Additionally, because I am not in pain (or what little pain I have is easily managed by the occasional ibuprofen), there is no need for radiation at this time. More good news.

Last night, I received the call I had been waiting for. A clinical trial is opening up and it's most likely that I will be a part of it. I still have to go through the complete pre-screening, but all signs so far look good. I received an additional phone call today giving me much more information. A crucial piece of info that would have been quite helpful for me is that there is what's called a "four-week-washout" for this study. This means that no treatments of any kind should be given four weeks prior to the start of the study. If I had known this beforehand, I wouldn't have gotten so antsy about this waiting period!

The study is still not "officially" opened, but I have all the paperwork. This is what's known as a treatment study (not randomized) so I will be given a combination of a known successful hormone treatment as well as the experimental drug. The study should open next week, at which time, things will happen in a hurry! Tissue samples need to be sampled (My tissue is already archived at UCSF.) and classified and then tons of appointments for the rest of the prescreening (scans, bloodwork, clinical exam, etc.). Based on the timing of everything, this looks like the complete pre-screening will begin on August 19. That's the same week the kids start school so it could be a very hectic time period! Once I am actually in the treatment plan, I'll have to practically live in San Francisco for a few days. Lots of followup. It will then slow down back to monthly check-ins.

Outside of medical things, we've been having a full summer. We've been back for over a year now, and we continue to marvel at the clear blue skies. Not tired of them yet! We like to go to the Santa Cruz Beach Boardwalk and have gone several times. We took our trip to the Deep South and the kids helped out a week in Vacation Bible School. We've had lots of guests this summer . . . either over-nighters and simply sharing a meal during their visit . . . and all have been quite fun. Rachel and Michael will be going to Middle School Church Camp at Mt. Hermon next week. Art and I are going to try to go on our own getaway for a couple of those days! :D We are also hoping to go to southern California for a wedding later in August.

Because of all the activities of the summer months, I've not been as consistent in my Bible writing project. I'm in Leviticus 21 now (out of 27 chapters). I had hoped to be finished with it by now, but it wasn't to be. Leviticus is a troubling book in many ways, but the main take-away from it (so far) is that we are all "unclean" and that no matter what we do to make ourselves "clean," it's just not enough. All the required sacrifices for this and that and using this kind of ceremony versus that kind of ceremony just paved the way for more legalism and corruption (holier-than-thou type thinking). All of this points the way to Jesus, the perfect and final sacrifice that cleansed us all.

I've also been participating in a study on David. I've never really liked David and I can't say that he's grown on me any with this in-depth look at his life. However, I am learning a lot and I'm quite enjoying the group of women I'm meeting with. They are incredible people.

Summary and prayer points:

That my eyes remain focused on God as my great physician and that the next treatment plan is as successful as He wants it to be. I do not believe it is God's will that I have cancer.
That Rachel and Michael remain focused on God as they process the impact of having a mother with a terminal illness. (Michael has been talking to me more about my being Stage IV. I think it just registered with him this week. Our conversations are good ones.)
That I'm able to share God's goodness with people in spite of the "badness" happening in my life. (I'm writing about this topic in order to share later on.)
That all of us have peace in this stage of our lives.
That Art's job continues on a smooth path and for him to find real rest when he's not working.
That we all may be a blessing to others.

As always, thank you for sharing our journey. The picture is from Saturday, July 27, when I walked the Golden Gate Bridge (from end-to-end and back), a total of 3.4 miles. I was with a beloved friend and the day was a gift.