Robin's Breast Cancer Blog

This collection of messages was written as we've been dealing with Robin's breast cancer for several reasons: (1) To keep our friends ("extended family") up-to-date. (2) To educate folks about "the cancer trip". (3) To help us absorb what was happening, and purge any negativity that might affect Robin. Robin must maintain a positive, hopeful attitude, but with realistic understanding. We follow the mantra, "One day at a time", and trust that God will make good come from difficulty.

Tuesday, December 28, 2004

The Latest on Robin - 12/28/04

 
Well, it finally happened. Robin's hair is gone.

A few days ago, we were reading a magazine article about chemotherapy options. One of Robin's chemos was described as causing "profound" hair loss. The other was described as causing "rapid" hair loss. We didn't realize what "rapid" and "profound" TOGETHER meant until Tuesday morning!

It started on Monday, but Tuesday morning, while shampooing, Robin's hair was coming out in clumps. It was very traumatic. She decided to let John (who has been sporting a buzz-cut himself for several months) cut the rest. Robin felt that this was a better choice than losing hair all day long at work.

After the initial trauma was passed, Robin handled it very well. Fortunately, (thanks to her friends) she already had a wig that looks very much like her own hair. She said that some of the men at work complemented her on her "doo". Robin even pulled the wig off for some of her friends at work so they could see her "Yoda" look. (She prefers to call it the "Sinead O'Connor" look).

By the way, her blood levels were tested yesterday morning (amid all this other stuff) and all blood levels were good.

Upcoming events:

Tomorrow, December 30th, Robin will get a PET-Scan to see if they can determine if the tumor on her trachea is cancerous. This test is not 100% conclusive, but it should give better indications than her previous scans, and it is less invasive than a biopsy.

On Tuesday, January 4th, Robin should receive her second chemo treatment. We are hoping that they have the PET-Scan results by then, but it is doubtful, since there are holidays in-between.

I'll try to send another update after this treatment, but certainly after we get the PET Scan results.

Larry

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Saturday, December 25, 2004

Update on Robin - 12/25/04

 
I figured it was time for an update on Robin, since it has been 11 days since the last message, and I've been getting lots of queries by e-mail. Before I to discuss her status, though, I want to thank all of our "family" for their prayers and support. I want to say that when I use the word "family," I speak of our "extended family" that goes far beyond the bonds of blood, which we do not choose. I am speaking of all those who have chosen to love us for whatever reason, and who have accepted us as a part of their lives in some way.

Our extended family from across the country (even the World!) have been praying for Robin. We have received great encouragement in cards, letters, e-mails, loving hugs, and verbal words. I don't think people really know how many others they have touched in their lives until a situation like this hits. From the response we have received, it is obvious that Robin has positively touched many lives. We want to send personal notes of thanks to each person, but that will take significant time. So in the mean time, please accept this as a token of our thanks to you, and to God, who has brought us together.

In general, I'd say Robin is doing pretty well. The Chemo symptoms have been manageable, and her spirit and hope seem good. Details follow below.

In my last message, Robin had just received her first Chemo treatment on Tuesday, December 14th. She seemed fine on Wednesday and Thursday, having only some sharp pains at night that kept her from getting a good night's sleep. On Friday, it hit her the hardest; she couldn't stand up without getting dizzy, so she stayed home from work that day. To me, the symptoms seemed to be like flu, with ache and pains, dizziness, and weakness, especially in the legs.

After that Friday, Robin seemed to rebound fairly well. She stays tired all the time and gets nauseated feelings easily. She has medications that she takes when those feelings start, and they seem to work. Her legs continue to feel weak to her; like they will buckle, but they do not seem to give out. She still gets the random pains, but they have become less intense, and she is learning to cope. Other than that, it seems like the same old Robin.

One different symptom that has occurred is in Robin's taste buds. She cannot eat or drink many foods due to the weird taste in her mouth. Anything with alcohol tastes like motor oil. For many years, Robin has been a "Diet Pepsi" addict, consuming "mass quantities" on a daily basis. However, since the Chemo, Diet Pepsi also tastes like motor oil, so she has switched to plain water or carbonated flavored waters. Spicy foods are definitely out. A friend at work suggested pasta and rice, and that, or soup, seems to work when she can't stand anything else.

The effects seem to be lessening over time, but she is still careful about what she eats, and she cannot drink Diet Pepsi.

Upcoming events:

On Tuesday, December 28th, Robin will go back to the oncologist to get her blood checked. They will be looking for drops in platelets, or red or white blood cells. They will give her some (very expensive) injections to boost production, if any of these is too low.

On Thursday, the 30th, Robin will get a PET-Scan to see if they can determine if the tumor on her trachea is cancerous. This test is not 100% conclusive, but it should give better indications than her previous scans, and it is less invasive than a biopsy.

On Tuesday, January 4th, Robin should receive her second chemo treatment. We are hoping that they have the PET-Scan results by then, but it is doubtful, since there are holidays in-between.

I'll try to send another update after this treatment.

With love and thanks to all, Larry

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Tuesday, December 14, 2004

Robin's First Chemo -12/14/04

 
Just a brief update since the last message:

Robin had surgery on Monday (12/13/04) to implant a "Porto-Cath" in her chest (just below her right collarbone). This provides an easy-to-find "plug" for the chemotherapy, with a catheter that runs into her arteries near her heart. The purpose is to ensure they hit the arteries, which can handle the toxins, and avoid "spillage" on other tissue that would be "burned" by the harsh chemicals. The surgery went well, but Robin is such a cheap drunk. The anesthesia knocked her out all day... as a matter of fact, when we got home at about 3:30, she went straight to bed and finally got up for the first time about 10:00pm. We went back to bed at 10:30.

Today (12/14/04) at about 12:30, we met with Robin's Oncologist, Dr. McClure regarding the results of the CT and Bone scans. The bone scans showed nothing but a little arthritis. The CT scan showed one (or more) inflamed lymph nodes in close proximity to her trachea on the right side. It is not positive that this is cancer (but it probably is). The doctor ordered a PET scan which may not prove anything conclusive, but will shed light on what it is. If it responds to the chemotherapy, that will add to the evidence. The only conclusive proof would be a biopsy, which would be invasive, expensive, and really wouldn't change the therapy.

After this consultation, we met with their financial counselor. She explained what the insurance would pay and the amount for which we would be responsible. All I can say is, "Thank Goodness for Insurance!!!" Rough numbers are:

Round of Chemo - $8,000 (Robin needs at least 8

of them)

Red Blood Cell Boost - $3,000 (per injection if needed)

Blood Platelet Boost - $4,000 (per injection if needed)

White Blood Cell Boost - $6,000 (per injection

if needed)

Not to mention the surgery, tests, consultations, etc., etc., etc.

Then we were taken to the Chemotherapy room. Robin sat in a recliner, and they hooked her up to four bags through the Porto-Cath, one at a time. First was a saline solution to flush the catheter. Then they gave her a bag of stuff to keep her from getting sick from the chemo (can't remember the name, but she has similar stuff in pill form to help her for the next few days). Then she received the real deal: a bag of "Docetaxel" followed by a bag of "Cyclophosphamide". It all went really well. The Chemo took about 3.5 hours. When she finally got unhooked, I said, "Shhhh. Listen. I can already hear the cancer cells dying in agony." To which she replied, "All I can hear I my hair screaming, 'Why have you done this to us?'"

We left the facility at about 5:00pm. Robin didn't seem to feel badly until the ride home when she said she was starting to feel a little "woozy". Actually, I think that my driving always makes her feel a little "woozy". I tried to get her to go out to celebrate, but she didn't feel up to it. I took her home and went out to get her prescriptions filled. It is now about 10:30 at night, and she doesn't seem to be feeling much more worse than woozy, with a bad taste in her mouth (and a little sore at the Porto-Cath).

I'll add more when there is more to tell.

Larry

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Sunday, December 12, 2004

Latest info on Robin -12/12/04

 
Lots of folks have been asking about the CT and Bone scans that Robin received last Wednesday. Although we do not have the full story yet, I felt obligated to tell you what has happened since my last report, and we have been told so far.

Robin has completed the first five steps of preparation for Chemotherapy. She has given so much blood one vial at a time that she was beginning to look like a pin-cushion. Her blood work shows her sugar levels are high, but everything else (including cholesterol) looked good. Her infection is improving with the antibiotics. Her EKG on the December 3rd indicated an anomaly, so she was referred to a cardiologist. Her oncologist said that she would probably use a different chemotherapy; one that was less difficult on the heart. On Monday, the heart doctor looked at the EKG, gave her an Echo-Cardiogram, and said everything looked good. He scheduled her for a stress test (treadmill) on Thursday, but had to reschedule when he figured out that the CT and Bone scans would be Wednesday, and she would still be full of radioactive isotopes. On Wednesday, Robin had the scans done - a full day experience. They said the doctor's report would be available on Friday.

Friday, Robin called the Oncologist's (Dr. McClure's) office to find out the scan results. Late that afternoon, a nurse from McClure's office returned Robin's call. She said that the doctor had not seen the reports yet, and probably would not get to them today, but the nurse read the information to Robin over the phone.

The report indicates that Robin has clusters of "diseased" lymph nodes on her right side that are near her trachea (wind pipe) and near the heart. Needless to say, this was alarming, but the nurse couldn't elaborate or answer any questions. Robin asked to see the oncologist on Tuesday before chemo.

Robin called Dr. Mason, her surgeon to let him know that the results were available, and to find out if this changed the plans. He called back a couple of times over the weekend, but missed Robin. We finally connected with him on Sunday evening, and he said that this finding would not delay the plans to start chemotherapy on Tuesday. He read the reports and said that the nodes were "moderately inflamed", and he expects more tests to be ordered by the oncologist; probably biopsies from that area. He said that additional specialists might need to be called for these.

We were pleased to hear that the findings will not delay the start of chemotherapy, for we are anxious to get treatment under way. Of course, the scan findings are distressing, but there are too many unknowns to start worrying about it. We are thinking that these findings represent adjustments that have to be made in the plans. I'll send more information when we have completed the chemotherapy. Hopefully, we will know more about how the scan results will affect the plans by then.

Larry

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