Category: Tests

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Good results


On Monday I had a check-up at the hospital. Fortunately my mom had pulled a ticket number for me from the machine because there was a long line at the blood lab.

When the doctor saw me at 4.30, she confirmed that the results were stable. Some values were a bit higher than last time, but still within the margin that she has set for me.

CEA at 8, CA15.3 at 14, Bilirubin at 8

My liver values are always too high, but that’s because my liver has been deeply damaged by the cancer tumors and then by the chemo. Just to share them with you, here are my liver values from Monday, compared to the values from 13 January 2015, and 11 November 2014, and the normal values for a healthy liver.

 

Liver functions Units Normal values Healthy liver 30 March 2015 13 Jan 2015 19 Nov 2014
Bilirubine umol/L <16 8 7 5
Alkaline phosphatase U/l <98 304 299 326
ASAT U/l <31 105 79 129
ALAT U/l <34 154 107 185
Y-GT U/l <38 115 92 98
LD-IFCC U/l <247 245 229 250

As you can see, the Bilirubin isn’t very high (for new readers, when I was diagnosed it was at 50!)

I thought I’d look up what the Alkaline phosphate values mean. The following Dutch site has a good explanation.

http://www.uwbloedserieus.nl/aanvraagformulier.php?id=130

Or see http://en.wikipedia.org/wiki/Alkaline_phosphatase#Elevated_levels

I found it quite interesting. A high value combined with a high Y-GT means the liver channels are obstructed which can be caused by cancer. If the Y-GT is low, the cause is more likely found in the bones.

Most sites may tell you something about a damaged liver, but rarely did I find a site that explains that this type of liver damage can be caused by (metastasized) cancer.

A well structured site that has information on secondary breast cancer is http://www.cancerresearchuk.org/about-cancer/type/breast-cancer/secondary/

If anyone has any questions for me, you can also contact me via Twitter @sheilaghosh

 

Sheila at AVL
Sheila at AVL
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Another hospital visit


I find it increasingly difficult to write about myself in this blog. But today is a much needed update about my medical situation. First of all, last week on Wednesday I had an MRI-scan and CT-scan at the hospital. My last scans were in October 2013, so almost 6 months ago. Since then, the bloodtests have shown that the tumor markers have been relatively low, and the liver values stable.

This time, I was very tired after the scans. I just wanted to sleep right after the scans. It might be because I’ve been going to bed too late lately, but I think the contrast fluid had something to do with it. Also, the IV needle was a bit painful as it pressed against my wrist bone. The young male nurse who had placed it was very nice, I recognized him because his picture (and that of other colleagues) decorates the fence outside the hospital around the area where they are building a new addition. So each time I go in I see their faces. Nice to know they photographed real doctors and nurses instead of models!

Yesterday my specialist shared the results with me. There were no tumors visible on the MRI scan, so the hormone therapy did its work. I find it quite remarkable that the cancer in my breast has basically disappeared, without any form of surgery or radiation. It makes me wonder if hormone therapy might be a way to get rid of the cancer for other women as well?

The CT-scan showed a few tumors in the liver which remain stable. My specialist showed me the photos when I asked to see them. It’s a bit hard to see, since the CT-scan consists of horizontal cross-sections of the torso which are shown in 2-D. She pointed out that there were several lymph nodes which looked swollen. At least it is cause for some concern and she wants to have another CT-scan made of the intestines and stomach as well. So my scan is scheduled for April 30th.

In addition, I asked for a bone scan, which is scheduled for April 2nd. I’ve been having some pain in my pelvis. It could just be the result of my new dedication to running (I try to run once or twice a week) in which case it might just be muscles aching. Or it could be a side effect of the letrozole (the hormone therapy – which is actually a hormone inhibitor). Just to be safe, I’m getting a photo and a bone scan.

Sheila jogging in Eemnes
Sheila jogging in Eemnes

In any case, she told me not to worry. She’s keeping a close eye on my health and if there is cause for concern she will switch to another type of therapy.

So altogether, good news: the tumor in the breast is no longer visible and the ones in the liver are stable. I will keep you posted as the results come in.

 

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Checkup


On January 11th, Victor and I had visited the exhibit by Henri Le Sidaner here in the Singer Museum in Laren. Le Sidaner worked around the turn of the 19th century in northern France. He combined impressionism with intimate compositions (called intimism) and painted some very beautiful scenes, with muted pastels, twilight with pink shimmers and canals along pretty villages. Very inspiring.

Last Wednesday I went to the hospital for my check-up. My mom met me there, so I had some company. The checkup went smoothly, all values were fine. It seemed to me the liver values were a bit higher but all within range. My oncologist also checked my lungs, liver and thought it all looked and sounded ok. My next appointment is in two months, March 12th. The week before I am scheduled for a CT and an MRI scan again.

Afterwards, my mom and I went to Nancy’s place for a bit. We stopped by Leafde (a nice little store near Nancy’s house) where I bought two small gifts for colleagues who just had babies (two dads!). My mom took me back to my car and we drove to a store on the way back. I parked my car on the street there and bought a nice jacket and silk blouse on sale. But when I got back to my car someone had driven the mirror off my car: it was hanging by a few wires. Fortunately the garage was on the way home (my mom took the tram back into the city) so I didn’t have to drive too far without a mirror. The guy at the garage taped everything up with black duct tape. That night, Victor and I went out for a lovely dinner together.
Thursday I worked and Friday I met a friend of mine for coffee. She told me about a dear friend of hers who had just passed away in November. She had cervical cancer and had fought bravely for over 3 years, but in the end got pneumonia and couldn’t get better. There’s nothing one can do or say to help, but I can only imagine the hurt her family must feel.

This past weekend I had a chance to relax. I wrote a little, drew a few pictures, did some laundry, went for a run.

Since then, Victor’s been studying hard for his exams. Friday is a big exam day, and next week on Tuesday he has two exams. I hope all goes well.

Nancy is in LA now, working hard on the Grammy’s and a special show the day after. I’ve been thinking about our trip last year and how special it was. Time has gone by so quickly, I wonder how this coming year will be for all of us. Tomorrow is Nancy’s birthday – here’s a happy b-day to Nancy from all of us!

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Paris and scans


Dear friends,

I forgot to tell you about Paris. Paris was wonderful. The Stanford alumni meeting was held in the Intercontinental Le Grand in Paris on sept 7th. I really enjoyed it. The Stanford Alumni Association did an outstanding job in organising the event and the mini lectures were incredibly inspiring. I went to Cliff Nass’ lecture on multitasking – he was my mentor at Stanford and was really happy to see me! He’s done research on multitasking which shows that people who think they are very good at multitasking usually aren’t; in fact, multitaskers are usually not very good at remembering anything they do. People who never multi-task are better at it than those who do it all the time. His advice: do 1 thing for 20 minutes at a time! I was very glad to hear this because since I’ve been sick my concentration has become better but only if I focus on 1 thing at a time. And in fact, I try to do only 1 thing for about 20 minutes and that seems to work well for me.

Dr.Nass tests the Google cars (the ones that self-drive) and Google Glass and is a very interesting person to listen to. It made me wish I had done my PhD with him (I did my Masters at Stanford, but I’m a PhD drop-out, gave up after 1 year at UT Austin). There was a meetup afterwards of people interested in consulting in developing and emerging countries. Perhaps something will come out of this.

That night we enjoyed a river cruise on the Seine which was beautiful. I met some great people. The next day Nancy, my mom and I enjoyed Starbucks and Chez Paul bread. I get a bit flustered when I see homeless people so I gave a beggar who had no shoes on the Champs Elysee a loaf of bread. What a contrast!

Last Friday (Sept 20th), I went to the AVL for scans. The AVL (Anthonie van Leeuwenhoek) is our national cancer research hospital. My last scans were in April, so it’s been a while. My mom met me there and watched my stuff. I had just sent off the last version of our draft Architecture for Digikoppeling (our national protocol for data exchange) to my colleague Tom who sent it on to our review committee. So at the hospital I had a bite to eat, they have a nice cafe. I sometimes forget that when I first arrived here I couldn’t eat at all. That was nearly a year ago (Oct 17th) and I remember smelling the pizza that the young man across from me (yes in Holland male and female patients share rooms) had ordered while all I could manage was a nutridrink with fake strawberry flavor over ice! I still give thanks every day that I can eat normally again and live a normal and healthy life!

So when I take off my dress and boots and my wedding ring (no metal in the MRI) I remember what it is like to be sick. Not to feel sick, fortunately that time has passed. The nurses inject the IV and connect me to the machine for the contract fluid. The MRI takes about 20 minutes and makes a lot of noise. There is a poster on the wall that you can see (I have to lie face down in the machine with my breasts in a plastic frame) so they must use some sort of mirror like a periscope but then flat. The poster shows a picture of Oscar Wilde, but the text is too small to read.

After the MRI, I get dressed again. The IV tube stays in my arm while I wait for the CT scan. After about 50 minutes the nurse comes to get me. The CT scan is quick. This time its face up in the machine. I notice the fluid in my veins because it gives you a warm feeling, and feels like a full bladder.

After the scan, the IV tube is removed and I put on my boots (dress stayed on this time). I suddenly noticed blood gushing out of my arm. I press down in time to stop the flow and go back to the nurse to get new gauze and tape. Next a quick stop to get my blood checked (there are no other patients so it is very quick) and I’m done. It is nearly 5 pm and my mom comes with me. We drive to Nancy’s house. It’s nice to be able to relax a bit and we order Thai for dinner. At home in Eemnes we have no good Asian food nearby so we almost always cook ourselves. But this is a nice treat.

I’ve been working on getting my websites updated and found someone to help me with the system administration of the server. Also, I’m starting to learn how to program Python. Last Tuesday I went to a PyLadies (Python Ladies) meet up in Amsterdam (@Marktplaats.nl). It was great to meet other women in IT and I’m motivated to start learning Python and Django!

Next Wednesday I have a meeting with Dr. Baars and will learn the outcome of my scans. I will update my Bucket list as well!

On October 12th, I’m attending the seminar “Tussen Hoop & Vrees” (Between hope and fear: for patients with metastatic breast cancer”.

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Long time


Dear friends,

It’s been a long time since you’ve heard from me. I’ve been so busy (and feeling good) that I haven’t been in touch. April was a full month, filled with joy for me but also some sorrow (the bombing in Boston made me sad) about what’s been happening in the world. My dear friend Laurie was actually close to the finish line with her friend Judy when the bombings happened.

I’ve been feeling well the last few weeks. The cancer is decreasing and stable, and I am now on new medication. I had several job-related interviews in April. One involved going to a Hippo partner day and I saw two ex-colleagues from Capgemini, which was unexpected and fun, and of course the Hippo crew.

I’ve got a job – can you believe it! – working in The Hague for a government agency on a part-time basis, thanks to Mark from Peopleware, who set up the meeting. I’m working 2-3 days a week which is great. UWV has been very cooperative. Also thanks to Arie for his help with my letters!

April just flew by. My dad came to visit me on his way home from Houston to Malaysia. It was wonderful to see him. He’s doing well and has a brand new research center with state of the art equipment.

We met also met Larry and Marilyn from LA who celebrated their wedding anniversary in Holland, and stayed in Nancy’s appartment. I met them the afternoon of the Hippo partner day and my mom took them to our house for a brief afternoon tea. It was a rainy afternoon but we went to Laren and had some poffertjes (a dutch treat consisting of tiny pancakes with powderd sugar and butter! They are wonderful people and I really enjoyed meeting them. I also reconnected with my Zonta club and volunteered at the Fair Work festival with Evelien. Fair work helps young people who have become a victim of unfair employment, bordering on slavery. The festival opened with a dance – a merengue – and workshops. We were asked to help with the styling workshop which was a great success. The young ladies were busy with creating their personal mood boards – something I learned from the styling workshop for Tanaquil’s bachelorette party, with Jorinde, a stylist in The Hague. After the moodboards they could select clothing from the tables – very old fashioned items but they liked them nonetheless. That really opened my eyes – how little is needed to help these young women who have so little and often have a negative self-image.
My friend Esther treated me to a wonderful lunch in the Bakker’s Winkel in Zoetermeer. It was the same place my mom used to take us for a treat back when we lived there (1980-1981) and back then it was called Twenties. The interior was much the same, small marble tables (used for sewing machines) and a very old furnace in the kitchen. They added a glass house with grapevines, very light and airy. I really enjoyed it!

For our wedding day we met up with our friends Ronald and Mariette, and had a great Indian dinner at the Taj Mahal in Bussum. I discovered that I can’t handle spicy foods anymore, a side effect from the chemo I’m sure. The next day I attended an investing workshop by Marcus de Maria at the Krasnapolsky hotel; he is a great public speaker, but I found the selling of the training a bit too much. I learned a lot, but skipped the next session and had dinner with Nancy instead at Mappa, a nice Italian place John had introduced me to (for a Penn/Wharton dinner in March). On April 27th, my sister in law invited Victor’s family over for a wonderful family dinner in honor of Thib, Victor’s dad’s 89th birthday. We saw Paul and Isabelle and their daughter Catherine from Munich, and Robin and Miriam and their son Luis from Mallorca, and Arnoud. Sylvia was very busy helping her mom and serving us; she is now in LA doing research and staying with a friend. Sebastiaan came from Groningen and Annet and Barbara joined us as well; they left for France the next day.

We had a great Penn event at the SkyLounge with a view over Amsterdam on April 29th. I made lots of little cupcakes for Nancy and Anne to sell at Nancy’s house. April 30th was the big event: Queen’s day (my Dutch friends know all about this but for my international friends this might be interesting). This year was sunny but cold so I watched most of the ceremony on tv – first the abdication and then the crowning of our new king and queen.

May was a bit more relaxed for me. My mom celebrated her birthday in Paris with my sister. Victor and I went to the Louwman museum with our friends Tanaquil and Pieter and their children. It was very impressive and the Alfa exhibit was excellent. We had a wonderful meal afterwards, and then watched the war commemoration ceremonies (may 4th). Nancy took Barbara, Henriette and me to Beyonce’s concert, a special thanks to her friend Alan who made this possible. It was absolutely spectacular. She is amazing, and a true professional who gives everything to her fans! When she sang Survivor I just had to sing along. Jelle and Anne were there as well, and thanks to them I was able to sit for a bit. We had the best location, stage right, right next to the stage: Barbara and Henriette even touched Beyonce’s hand! – but it was a bit tiring to stand all that time. It was a great show and wonderful experience.

Unfortunately this month we also lost a dear friend – Henk – who was in his 80’s but sadly very sick. We remember him as a positive enthousiastic gentleman, and think of his widow often. On the positive side, Henriette turned 20 last Friday. And we have a few more birthdays this week.

I feel very lucky and grateful that I’m alive and kicking, to have my energy back and to feel good. I’ve been catching up on things that I haven’t been able to do for a while. Also I set up a new business (a one-woman show, as a friend calls it!) which I named AsIsToBe. And I’m trying to help two friends with their ventures, and having a good time assisting. Victor is very busy with his studies, he’s started on his thesis, and is also working as an assessor for part of the time.

I’m sure I’m forgetting someone or something but I will update you again soon. Tomorrow I have to get my calcium levels checked at Tergooi because of the risk of osteoporosis. Friday is my next appointment at AVL. I noticed some minor side effects today – also felt a bit tired – but that could be because I cleaned my car, and the bathroom, and did the laundry. It sounds a bit strange but it’s nice to be able to live a normal life again, and I’m enjoying it! Thanks for hanging in there with me. I will try to report back soon!

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Time to share


Dear all,

Last friday I had another appointment with my oncologist. Because Victor is studying hard for his exam on Wednesday I drove myself and my sister Nancy met me at the hospital. It’s getting harder for the nurses to get blood from my veins, they have to use the little needles (they call them butterfly needles here) and the nurse had to try my right hand first, and then decided to try the left one. I was very relieved when the blood finally started to flow. Apparently I have narrow veins and thick walled arteries.

My oncologist seemed pleased enough with the results. The liver values are a tad higher (bilirubin at 12, white blood cells at 3.8L, other results aren’t in yet), but she says that’s probably due to the treatment I’m taking now. I will get two more cycles of the Xeloda (Capecitabine) but I can take them 12 days instead of 14 to reduce the sensitivity in my hands and feet. After these two cycles of three weeks she’ll start me on hormone therapy, which takes a few weeks to take effect. This wasn’t an option before because of the liver, but I guess we have the time now, which is good news. In 4 weeks time they’ll make new scans. So I have appointments on April 12th with another oncologist (Dr. Baars is attending a congress in London), an MRI on April 22nd (our wedding day), CT on April 25th, and the results on May 3rd. Add to that the Penn alumni drinks date at the Skylounge in the Doubletree hotel on April 29th, Queens’ day on April 30th, a seminar on investing on the 23rd and I’ve got April filled before it’s even started. Not bad for someone who intends to live in the moment and stopped using a calendar altogether a few months ago!

On March 17th and 24th I had several friends over for a high tea. Of course we made way too much food, but it was a lot of fun. It was nice to see friends together as well. Many thanks to my mom and sister for taking our dog Flo for long walks. I had also signed up for an introduction to yoga course at the Yoga Lounge in Hilversum (thanks to my cousin Ineke for the tip!). I really enjoyed it! It was a nearly private lesson since there were two students (including me!) and one teacher. She was great. I’m convinced now to sign up for more classes! The first session was challenging since my feet were hurting badly but I found Sunday’s session a lot more relaxing than I had expected.

Last night I had a sudden moment of sadness. What to do? What are my passion? Do I really want to write? Sometimes I do, and sometimes I think it’s a waste of time. What if I start yet another book and can’t finish it. But then I decided today that even that doesn’t really matter. I just ordered “The War of Art: Break Through the Blocks and Win Your Inner Creative Battles” by Steven Pressfield. Only I won’t get it until May 8th, because I also pre-ordered Star Trek The Next Generation Season 3 on Blue-Ray – yes I am a die-hard Trekkie (only TNG though), and that doesn’t come out until April 29th. Fortunately its region free, because the Downton Abbey Season 3 that nancy bought me in LA is not! Does anyone know how to make our Philips blue-ray player region free (its region free for DVD;s but not for Blue ray disks). Anyway, I’m rambling and didn’t even tell you the news. Got called by a headhunter. A small company in Amsterdam is looking for a Content Management lead and want to meet me. I told him I’m still recovering from an illness and if I can work (which I’m not sure about) I can only work part-time. They still want to meet me so I have a meeting on Thursday. In the afternoon I have a Liferay User group meeting, so should be fun! I will keep you posted!

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Update


Dear friends and family,

Thanks again for visiting me, thinking of me, praying for me, and sending me mail, comments and note cards.

My dad is coming to visit next week for my birthday, thanks to my sister Nancy who has arranged it all. He has not been to the Netherlands since our wedding, 7 years ago. It will be good to see him, although I will greatly miss Deloris who cannot come.

The chemo today was cancelled due to my low white blood cell count. Next week, we’ll continue with the double dose (AC together). The nurse had good news too: the billirubine has declined to 24, from 39 the last time (the first 3 week period). So the chemo is working!

Last Thursday I went to Amsterdam to see Nancy and Natascha and Neeraj met us there. Later Elly, Noreen and her husband Andrew came by as well. They’re so kind and caring! After they left, Nancy and I had a thai meal at the Thai company. Nice to be together!

On Friday Sanneke came, and it was really good to see her. She had brought me the most beautiful flowers, all colors of the rainbow. Unfortunately I had to go to the hospital because of my skin rash so we had a short visit/ My mom drove me to the hospital twice, once to pick up a form and make the appointment and next to see the dermatologist . It turned out to be eczeem (eczema).

This weekend was very very hot. Went for a run with Claudia on Saturday and wrote a bit on Sunday.

On Monday I was invited to go sailing with Erwin, Ingrid’s partner. He has a catamaran in Muiderzand. It was a beautiful afternoon and I really enjoyed it, especially our talk about Buddha.

On Tuesday my aunt and uncle came all the way from Wemeldinge Zeeland to Eemnes to see me. They’re very special people, and I really enjoyed seeing them again.

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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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