New energy

Dear friends, my sincerest apologies for not writing sooner. January has been a busy month for me, one in which I’ve done more than in the previous months!

In short, I’m feeling very good, better than I’ve felt in months, at least since I found out I have metastasized breast cancer.

A quick summary of the medical progress so far:

  • On January 18th, Victor took me to the hospital for a meeting with my specialist, Dr. Baars. She was positive about my blood values. The liver values continue to drop:
  • My bilirubin is down to 10 (was 11 on dec 21st, and 16 on nov 21) – this shows that the liver is functioning nearly normally.
  • The other liver values (Alkaline phosphates, ASAT, ALAT, Y-GT) are still higher than normal but much lower than before – these reflect the liver damage caused by the cancer and by the treatment.
  • Dr. Baars explained that the treatment has caused the formation of connective tissue in the liver.
  • The only thing to cause minor concern are my low white blood cells (leucocytes) which should be between 4.0 and 10.5 (10E9/L) but are at 3.3L. This is the effect of the capecitabine. This is still high enough to continue treatment, but I am to take the pills 12 days instead of 14.
  • My next appointment is on February 6th, and after I return I will get scans on February 26th and an appointment with Dr. Baars on February 28th.
  • This past week I started the second course of medication.  I’ve experienced some side effects, minor nausea, tingling hands at night and insomnia, but nothing to worry about.

In addition, Dr. Baars very kindly wrote a letter on my behalf for my trip to the US with Nancy in February. In the letter (for a medical professional if the need arises), she says the following:

“After the treatment with i.a. Mitmycin-C the condition of the patient has been improved considerably. The liver function nearly normalised. The patient still has a large breast carcinoma, liver metastases and lymph node metastases. Because of the improved liver function she was able to receive systemic treatment. We started mono therapy consisting of Capecitabine given during two weeks twice daily. After one week rest the patient will continue with the next course. The plan is to re-evaluate the patient after three to four courses. If she reacts favorably to the treatment given we can consider loco regional treatment for the large breast carcinoma.”

In other words, if this treatment works, then I might qualify for other treatments, such as radiotherapy or hormone therapy.

During the first three weeks I experienced no side effects at all, which gave me a lot of energy to do new things. Among other things, I assisted my good friends Mark and Jill with a workshop, which was great fun. Nancy and I went to Aken, to the Carolus Thermen. The waters are spring-fed and more than 70 degrees centigrade at the source. In the swimming pools, the water is 35 degrees centigrade (95 fahrenheit). There was an option called the Karawanserei, which we tried out. It looked quite exotic in the picture with sand and warm lights, but turned out to be a room with murals of a desert, the sand was gravel and the lights were super bright. They played some soft music in the background. A very odd experience altogether. The next day we took a quick look at the cathedral where Charlesmagne was buried on January 28th, 814 (almost 1200 years ago) and then stopped by Starbucks to enjoy some coffee and hot chocolate.

My friend G took me to Museum de Pont in Tilburg to see an exhibit by Anish Kapoor – very worthwhile, incredibly impressive! It was a lovely day, sunny and lots of snow, but the museum was tucked away in a residential neighborhood so was somewhat difficult to find.

Nancy celebrated her birthday quietly in London with our mom, and promised(!) me to celebrate it in June. She’s never liked having a birthday in January and with the snow it has not inspired her to give a party. Nancy has arranged a flight for me to LA using her air miles (thanks Nancy!) so I will leave on February 8th, and return on February 25th. I plan to help Nancy on the Grammy’s on the 9th and 10th (mostly by making Starbucks runs for the talent staff in the office!). On the 13th, we’ll start driving along the Pacific coast highway (aka PCH or Highway 1). Our first stop will be  the Coffee Bean in Santa Barbara (yes, Nancy is a big fan!) and on we drive to Cambria where we will spend the night. The next day we hope to catch a tour of Hearst Castle which, believe it or not, I have never visited in the 6 years I lived in California. Next we will drive to Carmel where we plan to visit the Point Lobos State Reserve. Next is Monterey, with Cannery Row, the Aquarium and lots of John Steinbeck novels for me (which I plan to buy in LA because I think 8.99 for an ebook isn’t worth it compared to the real thing).

And the latest news from The Netherlands: our Queen Beatrix is retiring as Queen on Queensday this year (April 30th) in Amsterdam in the Nieuwe Kerk (New Church which was founded in 1409), and her son Willem Alexander will become King, and his wife Maxima Queen of The Netherlands. The New Church is used as a museum, not as a church. Queen Beatrix was (in my humble opinion) a great queen, who has always demonstrated kindness, respect, courage and a great deal of professionalism. I especially like the fact that she is a sculptor. Our country has been a kingdom for 200 years, end of this year, and this coincides with her 75th birthday this year. Queensday is our national holiday which we celebrate on April 30th, which was her mother’s birthday, because like Nancy, her birthday falls in January. Next year it will be celebrated on April 27th.

As we say here “Orange boven!” (which translates somewhat awkwardly into Orange on top – the royal family is called van Oranje, of Orange). Not everyone here will share my opinion, but everyone is welcome to comment on my blog!

On that note, I’ll leave you all to enjoy the rest of the week! I promise to write next week after I hear the results.

5 Replies to “New energy”

  1. Goed om te horen dat het weer beter met je gaat. Gelukkig heb je verteld dat je minder schrijft als het goed met je gaat. En 2,5 week naar California klinkt helemaal fijn. Geniet ervan!

  2. Hey Sheila,

    Great to hear everything is under control and that you are enjoying life again. I’m sure you’re looking forward to your trip to California and I hope you and Nance have an amazing trip filled with fun, adventure and sun.

    I look forward to hearing all about it!

    xx Natascha xx

  3. Hallo Sheila, geweldig dat het goed gaat met je nu, Geniet van alles en hou je maar taai ! Je bent een voorbeeld . liefs van Focqueline en Jan , L’dorp

  4. Hi Sheila, ik hoop dat je goed nieuws hebt gehad afgelopen woensdag. Ik wens je in ieder geval een hele fijne vakantie meid, je hebt het meer dan verdiend. Liefs Claudia

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