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Treatment #1 – July 18th, 2012


Dear friends and family,

To start off: my first day of chemo is done and I feel absolutely fine! No nausea, no constipation. Happy me! I hope it stays this way. Thanks for all the lovely flowers, the house is filled to the brim. I feel very loved by all of you!

This morning the appointment was rescheduled for 10.30-11. We arrived early and waited at a table till someone came. Of course the promised volunteer was no where to be seen. So I went to the nurses’ station and someone approached me right away. Of course I went back to bring Victor along. The room was pleasant. There were three men receiving chemo but they were very nice and quiet. One man’s wife was there as well so Victor could stay.

I sat in a blue chair, like a dentist’s chair or a business class seat it could be placed in all positions. Very comfy. I selected some magazines, had my water bottle ready and was ready to go.

The nurse, Liesbeth, helped me. Also Jannie, who had seen me on Monday, came by to explain the new medicine schedule. Liesbeth wrote it down. Thanks to the lower dosage I can use fewer medicines.

Next, the cold cap was selected. This is a plastic cap with tubes which are cooled to -6 degrees centigrade to cool the hair folicles. This is to prevent hair loss. Well, the small cap was too small so that it would leave a round bald spot in the middle – not a nice look. The next one was too big, but there was no other choice. The ladies put on a cover and tightened it but still there was too much space. So they stuffed it with bandages and napkins and then pulled on the straps together. It was a very funny sight! They tightened the strap around my chin so tight that it nearly crushed my chin. So I asked them to loosen it, which they did, somewhat unwillingly.

See the result for yourself and have a good laugh!

The man across the aisle called me Motor Mouse. I guess I kinda look like one.

Well, the cold cap wasn’t so bad. Except when they brought lunch – I had one slice of bread with cheese which I cut into tiny little pieces because I couldn’t open my mouth wide enough. No big deal though! It surprises me that the hospital doesn’t have healthier food. No vegetarian soup, no greens.

The chemo was fine. I read two magazines which had lots of pictures of beautiful seaside resorts with sun! Why can’t we have sun here? Each day that starts out sunny ends up rainy or cloudy. After two and a half hours, I was free to go. Very bearable. Next week I will need to have my blood checked on Monday and back on Wednesday for the next section. This way it’ll be no problem.

Afterwards, Victor dropped me off at Landgoed Groeneveld (a castle and park in the woods between the hospital and our house) where Nancy, Ellen (my mom) and Barbara were walking with 3 dogs: Puk, Pippa (also from Amsterdam,Puk’s girlfriend) and Flo. We went to the organic store with produce from the farm. Its a great store called Hoeve Ravenstein, for anyone interested, located in Landgoed Groeneveld in Baarn.

We had lunch at home – veggie hotdogs. Fortunately I feel fine. Let’s hope it stays this way. Take care all!

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Haircut and update


Yesterday my sister arranged an appointment for me at my hairdressers, Haute Coiffure Gebert. Very good hairdresser, at least something to look forward to. I had decided to cut my hair short, since it is easier with the cold cap and easier to style. The hospital flyer said to use only baby shampoo, but my hairdresser, who has experience with patients who lose their hair, nodded his head. “You know what baby shampoo is supposed to do, don’t you. To prevent it from hurting your baby’s eyes. It’s got a high pH and isn’t good for sensitive skin.” So that means I can use my own shampoo (volume!) – yes it does. Happy me. Two bottles of Zwitsal are available for young parents who need it! Send me a whatsapp if you want it (you have to collect it here in Eemnes)!

Nancy had paid for this treat as well, so when I walked home, I was carefree and my hair looked nice. Of course, how to keep it looking that way is the next challenge.

Victor shared an e-mail with me from our friend Marc Dufour, who lives in Canada and has metastates from colon cancer. He has done a lot of research (he is a gynocologist) and has found an alternative therapy which might be worthwhile for me if all else fails. See his message on the page Experiences.

This morning the oncology nurse called me. In the meeting my oncologist had yesterday with the specialists from Anthonie van Leeuwenhoek hospital (specialized in breast cancer) they discussed the chemo dosage and decided to lower the Adriamycine to 20mg per time, and deliver it weekly. She asked me to come in at 10.15 because it was still being prepared. Also, this means I have to come back next week and the week after. They were worried the liver would stop functioning altogether and that’s why the dosage has been lowered.

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The results


Today at 11 am I had a meeting with my oncologist – our first. My friend Ingrid Claassen joined me for the meeting, since Victor was too late to cancel his assessments. Ingrid has written quite a lot of patient brochures for different organizations, such as the Dutch association for general practitioners, and she is familiar with the medical terminology. A great friend to have by your side at a time like this. The sun was shining as we walked into Tergooi Hilversum.

The oncologist was a young man. As soon as we sat down, he said to me: “I have bad news. Very bad news. The cancer had spread inside your liver.” He gave me a moment to react, and I nodded. “Do you understand what this means?,” he said to me earnestly, “It means we cannot cure you.” I explained that I understood exactly what he meant and that I had seen this coming, and was prepared for this answer. He couldn’t believe I was so calm. He apologized for starting our first meeting this way, normally, he explained, we meet the patient first and then go through the process. Now, he had to start with the news that I cannot get better.

He asked if I had seen the CT scans of the liver and since I had not, he showed them to us. The scans showed a large, no a huge liver. The liver had grown past the left ribcage into the area where the heart is, and was pressing against the lungs and stomach. That explains why I have been short of breath, my longs have less space to breathe. The scans also showed darker spots spread around the liver; these are the metastases (uitzaaiingen).

Next, the oncologist asked us to get my blood analysed and then to come back. Basically, he continued, we have to start the chemo as soon as possible. It is the only way to try to reverse what is happening in the liver. It is more important to treat the liver now, than the breast. You won’t die of the breast tumor, but of the liver. He conducted a quick physical examination and asked if anything hurt. But that was not the case. Ingrid said later that while I got dressed he  told her that one cannot get used to this (meaning the bad news). Also, he was extremely surprised that I was in such good condition (which is funny, since I thought all this time that my condition was poor). That may be a blessing in disguise. He said we have no time to lose.

The doctor had discussed the results with two colleagues and agreed on the following: 3 rounds of chemo. So this wednesday will be my first day of chemo. I will get the AC chemo, at 80% strength. There is a risk that the liver cannot handle the chemo and will fail. But there is also a chance that the chemo will help to reduce the tumor size. In three weeks time, a blood test will show whether the chemo has effect. Then the second round of chemo will start. After the third round, the team will discuss the state of the liver and perhaps introduce other therapies. In the meantime, I can eat what I want as long as I don’t lose more weight. So I think I’ll add some french fries to my diet of vegetables and oatmeal! He stressed that it was very important to be honest at all times. I could ask anything but I should stay clear of unconfirmed stories and sources. He also stressed I should not take any form of vitamin supplements since it could interfere with the working of the chemo and could cloud the results.

We had to come back at 1 pm to talk to the nurse about the chemo, so we had a chance to have a bite to eat. I was starving, so no issue there.

The nurse was kind and explained the whole process to us. Fortunately Ingrid took copious notes because I heard what she said but couldn’t remember much. I will get a special cold cap which is meant to protect the hair roots to prevent hairloss. Also, I will get a special injection to boost the production of white blood cells. Next, we went to the drug counter to pick up the anti-sickness medication. I made a joke that I always thought Victor ran the risk of liver disease because he likes to drink whiskey and wine (he stopped drinking btw) and now here I was with a near-liver-failure. She thought I took it all very lightly. Well, I’ve decided whether I have weeks or months or years to live, I’m going to make the best of it and I mean to have as good a time as I can possibly have. Carpe diem! Onwards we go!
Afterwards we had a very nice tea and cheesecake in the tea house in the woods, where my mom, sister , Barbara, Valentine and Flo were waiting. Although it was raining, it was still very fun! So much for now.
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The liver


Wow, who would have guessed I have a diseased liver? One that has scar tissue and looks bad. So I’m back to the hospital to get a liver biopt.

I used to think that I was a blessing for the medical system since I was never sick. Well, I must have used up most of my contribution just with the visits of the past week. Am I glad we have such a reasonably health care system here. Everyone who pays their contribution (which is nearly everyone but there are always some people who cannot or will not participate) – which starts at 1000 a year but can be significantly more if you have a chronic illness – gets medical treatment. Lucky me. Anywhere else I would have a big problem.

Yesterday at noon our GP (general practitioner, huisarts) came by the house. She’s very involved and always available if you need her. Who’s GP drops by your home? She explained to us that the reason the biopsy results take time is that they need to develop a cell culture from the tissue. Also, there could be another explanation for the liver damage. We will have to wait till next week before any results are available. Once they are, she will get them as my GP and I can get them as well. This will be nice since I would very much like to see the facts. I still do not know the kind of tumor we’re dealing with. She also said she has many patients who are beyond a cure but can live rewarding lives for many years, thanks to much improved chemo therapy which can really slow down the cancer.

At one pm  I reported to department D0 – outpatient care (dagbehandeling). The nurses said I was way too early (2 hours early) but I could sit in a room with magazines and I passed the time reading magazines I normally wouldn’t read, such as Jan (didn’t care for it much), Glamour (fashion seems very useless when you have cancer), and Gezondheidnu which was ok.

Just before 3 the nurse took my bloodpressure. At 3 pm the nurses came to take my bed on wheels to the radiology department. I walked behind it, which was funny. Once there, I had to wait a few minutes in the hallway. The male nurse who had helped me with the bonescan walked by, recognised me and wished me luck.

Once inside I had to take off my shirt and boots and lie down on the bed. The radiologist first did an echo, and then prepped the skin. He said the local anesthetic (verdoving) would hurt and it did. The nurse (Yvonne) sat by me and held my hand in case it hurt too much. But I managed ok. Then the histological biopsy was taken with a thick needle, same as the one used for the breast. He took two biopsies and then used a thin needle (I felt the needle in my liver, bit painful and strange) to extract additional cells. From my last biopsy I recalled that this allows them to look at cells directly under a microscope, thus giving a faster diagnosis. So I was glad for that. When he was finished they all said I was brave. But to me that’s normal, doesn’t seem very brave at all.

They are all very nice and very professional. The nurse went to get my shirt and handbag and helped me to put it on. It felt a bit bruised and a bit painful. Once my stuff was loaded onto the bed I was carted out of the room and placed in the hall. The nurse who had taken my bloodpressure came to get me and took me to a patient wing, to a room with 3 other patients. These patients all had visitors who were really loud, a cacophony of sounds. It annoyed me so much I asked for another room. It worked, I was taken to my own little room. I had hoped to get out of there by 5, but they said they’d keep me till 6. Every 15 minutes the blood pressure pump was activated which meant I couldn’t sleep. At 6 nurse Erik told me I had to stay another 2 hours and I couldn’t believe it. But that’s the protocol in case the liver starts bleeding. Fortunately, my mom and sister came at 6.30 pm at visitor hours. They brought me nice silk scarfs in teal and blue and soft orange for when I lose my hair and had all sorts of stories to make the time pass. At 7 I was carted back to the room I was before. This time the poor lady next to me was sick and throwing up. Boy, was I glad I could leave at 8. Some people aren’t so lucky.

Monday is my appointment with the oncologist who is supposed to be very good. Today and tomorrow I will try to do some work to get my mind off things.

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The results


After waiting an hour in the waiting room, we were called into the surgeon’s office. He began with the MRI. The MRI showed that the tumor area was about 7 cm large, which confirmed his initial diagnosis and meant that the full breast and skin would have to be removed.

He continued by telling us that the bone scan was fine, and also the lungs were free of metastases. This was not the case for the liver. The radiologist had seen some abnormal tissue on the echo and had requested the CT Scan. The CT scan showed that the liver was highly damaged. The doctor asked me if I had any liver diseases in the past, such as Hepatisis B or C. Apparently my liver looked like one with cirrhosis. This could also be damaged due the cancer cells, but in that case the liver would be infected all over. The only way to be sure is to take a liver biopt. Since there was a multidisciplinary meeting in the afternoon where my case would be discussed, my doctor asked me to return at 15.10.

This is of course bad news. If the breast cancer has infected the whole liver, there’s not much that can be done about it. Chemo therapy is then the only option.

We went back at 15.10 pm to discuss the outcome of the meeting. The doctor informed us that the team agreed a liver biopt should be taken, and he had scheduled it for tomorrow. Before the biopt is taken, a bloodtest must be done to check the blood’s ability to clot, and to check for Hepatisis B or C. Next week, I am scheduled to meet with the oncologist to discuss the results, if they are done in time, and possible treatments.

Since I’ve been doing some research on the internet, I’ve learned that metastases in the liver are a bad thing. Basically, getting better is unlikely and treatments are aimed at prolonging your quality of life. Still, nothing to do but wait for the next set of results. So tomorrow, I’ll go in for a liver biopt.

It still seems unreal to me that I would have such a bad liver, considering I’m hardly ever sick, and have been eating healthy my whole life. I will now try to come to terms with the diagnosis and try to make the best of things! I’m so glad Victor is such a wonderful supporting husband and best friend. Thanks again to everyone for your support, it means a lot to me.

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New pictures


Valentine gave me beautiful flowers on Friday.

me in the garden

Tanaquil came by on Saturday, while the sun was out. Her flowers were for Victor, which was so sweet.

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Jan des Bouvrie @Singer


It was raining terribly so we had to cancel our Ivy Circle picnic, which was too bad. Instead, Victor and I went to the Singer museum in Laren to see the Jan des Bouvrie (famous Dutch designer) exhibit. On display were several of his furniture pieces along with his art collection. Very vibrant colors but very strange works of art. I was a bit disappointed because I had expected to see more of de Bouvrie’s oeuvre but I think you should see it for yourself and let me know what you think!

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Smoothies


Several friends gave me a very good tip: make sure you’re fit before you go into surgery. It speeds the recovery process. Also taking in additional vitamins and protein should help. Since I mostly eat vegetarian I decided some supplements might help. So last Thursday I started to search the internet for supplements. A strange world appears: mostly sites for (presumably) young men advertising instant muscles if you use their protein powder enriched with creatin. Well, that certainly did not appeal to me. When I added the word women to my search, different diet sites popped up. Apparently you can buy all sorts of flavored protein powder, mostly intended for weight loss. Since I don’t want to lose any weight (I’m down t0 52 kilo’s from 56), that just wouldn’t do either.

Finally I found a great natural health food store online where I could order soy protein, soy milk (to make my shakes). To add in some vitamins I also ordered natural Acai powder and Goji fruit powder. Never tried it before but they are known as wonder foods due to their high vitamin content. Add in some chia seeds and we’re ready to go. While I was at it I ordered some nice herbal teas and mascara (ran out). Made a smoothie yesterday and today. The powders taste a bit funny so I added in a lot of strawberrries and some banana. Hope this works. Any tips will be much appreciated!

Then, as for feeling fit: I feel I’m out of condition. Last week I started rowing on our concept2, just 2 km for starters. Today I went for a run (6 km), but had to stop to catch my breath several times. I had to take a long nap this afternoon, I was really tired. I never take naps so this was strange for me. I guess I need it now.

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Tests – Thursday July 5th


Back at Tergooi Blaricum at 9.15 for the MRI scan. Again an injection, but this time, the needle was taped down so that the contrast fluid could be injected while I was in the machine. Face down, I went in with headphones on and eyes closed. The machine made funny and loud noises, each was different, when the scans were made. It lasted about 25 minutes. Afterwards, I could get the CT scan made, but it turned out they needed the Creatine bloodlevels first. So Victor and I went back to Poli 5, Chirurgie (surgery) where it was very crowded. After 20 minutes I could finally pick up the form to then go to the lab. It was 10.45.  The CT scan was scheduled for 11.40, and the lab needed 1 hour to process the blood. Just in time! For the CT scan, I could keep on my shirt and legging. Again, a needle and contrast fluid was injected. I had to breathe in deeply (was never very good at that). The contrast fluid tasted funny, strange to feel it go through your body. Twenty minutes later I was done. Outside I ran into Annemieke, a Zonta member.

Victor and I picked up some lunch at the Organic store in Laren and had a nice lunch with Nancy and Ellen. Nancy and Ellen took the dogs for a nice long walk and Victor made a wonderful dinner (again).

On Tuesday, July 10th, I have an appointment to hear the results. I’m a bit anxious about it. But also relaxed: nothing to do but wait.

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Tests – Wednesday July 4th


Today I have to go through some tests to check if there are metastases in other parts of the body. This time in Hilversum.

  • First came the thorax (lungs) photo. I stood in front of a plastic plate and the pictures were taken. Very quick and painless.
  • Next the echo. We had to wait a long time, I was worried I’d be late for the bone scan. The same radiologist helped me. He was very kind.
  • Then to the nuclear department where I got a quick shot with Techneutium, a radioactive fluid.

We could go back home to have some lunch with my mom and Nancy. 

  • At 1 pm, Nancy and my mom took me back to the hospital. Ofcourse I got a bit lost. The nuclear department is tucked all the way in the back.
  • I recognized the patient before me because he also had his echo just before I did. He was very cheerful and told me to think of good things so the time would pass quickly.
  • The bone scan was painless – it took less than 20 minutes. You’re raised up to the plate so that its millimeters from your face, but the whole thing was relaxed, with music in the background.

At home, I was too tired to work so I went to lie down for a bit. The hospital called me to schedule a CT scan for the next day. The sun was shining but I felt a bit down. Could there be bad news? Sometimes waiting can be hard.

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