Author: Sheila Ghosh

Enterprise and IT architect, patient advocate for metastatic breastcancer and creative writer
Posted on

Good news – continued


So yesterday I was tired and broke off my post without finishing it. Tuesday and Wednesday night I had trouble sleeping. Last night, I started to feel a cold coming and today I spent most of the day in bed catching up on sleep.

So the same radiologist – dr. meier – performed the procedure. Because Lianne, the intern, was there, he explained the process to her while he was working. Unfortunately for me (being the subject of the procedure) I couldn’t quite see the big computer screens with the imaging. There is an x-ray machine underneath the table and the images are displayed. This way, the radiologist can see the catheter going through the artery. He first gave me a local anesthetic using a syringe, and like last time it didn’t work right away. He sounded surprised when I said I could feel it, and gave me an extra shot. I said something like some patients are difficult and they thought it was funny.

The procedure went quickly, and this time he knew exactly where the right artery was. He had a number of thin threads that he pushed through the catheter (which is a long transparent thin tube). The chemo went through this as well. When he had finished, it was time to put in the plug. This is the only part that is painful. I turned my head away and winced because of the pain. Dr. Meier talked to me and told me to keep breathing, which I thought was good advice, and then asked me my plans for the weekend. All to keep me from thinking of the pain. Well, I said, I’m going to lie in my bed and sleep. What about the arrival of Sint Nicholas he said, aren’t you going to go see it? I haven’t wanted to do that since I was 6, and our kids are far too old. He said his parents in law were planning on going without children, apparently they liked it. As he talked he finished placing the plug and the pain ceased. He talked as if we were having coffee.

He asked me if I would be coming back but this was the last time. He wished me the best and I went back to my bed and waited for someone to pick me up from the hallway (they carted me around in my hospital bed). I asked Lianne if she could see everything on the screens and she said that it was very interesting. Apparently this is a specialty called intervention radiology. I was impressed with the way Dr. Meier worked, very precise and professional.

Once upstairs I had to pee, but I was not allowed to move so Daphne gave me a bedpan. A little later I got my lunch (vegetarian croquet and broccoli soup) and then I rested for a while. My mom arrived around 4 PM. Just after, the doctor stopped by to see how the wound looked and she told me I could go home at 5. The nurse removed the IV and we packed all my things up. My mom drove me home and I slept in my own bed that night.

Yesterday I felt great. No pain at all, I was able to move and walk around. But then last night I felt I was getting a cold. And because my white blood cell count is low, I’m not taking any chances. So today and tomorrow I’m resting and taking it easy.

 

Posted on

Good news!


Yesterday Victor drove me to the hospital and we arrived at 7.50 AM. I had to get my blood tests done, but the person ahead of me took a while, so I had to wait. A little after 8 I was done, and we went to the restaurant to have a bit of breakfast. They have delicious croissants, so now that I can eat everything, of course I had one.

At 9 o’clock dr Baars came to pick up us. She had good news for me. The blood tests showed that the chemo had worked, all the liver values had dropped significantly. My billirubin is now at 16, a normal value. Some of the other values are still too high, but she didn’t seem terribly concerned about those.

Here are some of the values:

Liver:

Billirubin: 16 (was 24 on oct 15th)

Alkaline phosfate (alkalische fosfaat): 745H (was 1660 H on oct 15th)

ASAT: 75H (was 144H on oct 15th)

ALAT: 69 H (was 86 H on oct 15th)

Y-GT: 479 H (was 723 on oct 15th)

LD-IFCC: 192 (was 402 H on oct 15th)

Other: CA 15.3 (tumor marker for breastcancer): 50 (was 95 H on on oct 15th)

My platelets were fine this time, but the white blood cells were on the low side, so she decided to go ahead with the treatment, but with a light dose of chemo. Dr. Baars also said she didn’t think a third treatment would be necessary, so it would be the last angio treatment. She wanted to see me in 5 weeks, but that is Christmas, so we have an appointment for December 28th. On the 21st, I have to go to get the scans done: an MRI to check the tumor in the breast and armpit lymph nodes, an echo, a CT scan for the liver, and a blood test. That way she will have the results on the 28th. She also explained what is coming next: a cure of Capecitabine, a chemo in pill form. I can take it at home. The cure will start on the 28th of december, I think.

This chemo is directed at the breast cancer, also in the breast and lymph nodes. Possible side effects are red palms or red and sensitive feet, mucositis (irritation of the mouth), diarrhea, and irritation of the eyes. So I guess I’ll take the Caphosol mouth rinse again to make sure I don’t get mucositis again.

So all in all this is good news.

After the meeting we went up to the fourth floor where nurse Daphne showed me to my room. I had a room to myself, which is a real luxury. A little later a doctor came and she placed the IV needle and attached the IV. She was assisted by an intern who asked me if she could watch the procedure. No problem, I said.

 

Posted on

AVL


Today we went to the AVL hospital in Amsterdam. For a change, we got up early (6.45 AM) and headed out to Amsterdam. The hospital seemed quiet. We dropped my suitcase and blanket off on the 4th floor and went back down to the ground floor. First we went to the lab to have blood taken. A little after 9, dr. Baars came out to meet us. She had gotten the lab results and my platelet levels were too low for the angio procedure. So everything was rescheduled for next Wednesday. Because I had some pain in the side since Sunday, she wanted to check the liver with an echo. The echo could take place this morning.

So a little later, Victor went back up to get my things and I went to radiology for the echo. Victor met our dear friend Mariette in the hallway and they came to the waiting room to meet me. The echo went by fast; the radiologist couldn’t find anything dangerous. He saw there was a lot of gas in my intestines and advised me to drink water frequently. Afterwards we had coffee and tea in Mariette’s office. She works at AVL in the department of radiotherapy where she co-ordinates the flyers, patient folders, website information etc. It was nice to see her!

We left AVL and the sun started to shine. I didn’t feel like going home straight away so we went to a garden center – they had a Christmas show already! – and bought dog food for Flo and a bird feeding house.

Dr. Baars had called while we were shopping and left a message. She had received the liver values and they looked good. So the treatment seems to work! I felt very relieved, especially because I had been worried the pains might be the cancer itself, but they are caused by the chemo. So I’m home now, and will go back to AVL next Wednesday.

 

Posted on

Feeling better


On Sunday, we visited Alice, Jasper, Amelie and Arthur in the AMC Emma Children’s hospital. Arthur was born at 33 weeks, but despite his small size, he’s doing well. He can drink from a bottle, and apart from an infection the day after he was born, he’s healthy. Alice had her first chemo on monday. She looked well, but the illness is awful.

This week I really felt much better. I can eat almost anything now, no more pain in my mouth, the mucositis is over. I’ve had visitors this week, and on Thursday, Victor and I took the train to Amsterdam. He went to the University of Amsterdam and I met my mom in the Bijenkorf for a tea.

Some days I’m still a bit tired (like today), but I’m walking each day now, and yesterday I cooked for the first time in a month! Victor has taken really good care of me, cooking every day and doing the groceries. Here’s a picture he took of the fall in Laren.

 

Next Wednesday I have my second treatment in the AVL. I feel like I need it, so I’m glad to be able to go. I’m lucky I am able to get this treatment. More next week!

Posted on

Goodbye Sander


Last Saturday, November 3rd, I decided to go visit Sander, who was at his parents’ house, two streets from us. It was raining and the streets were eerily quiet.

Mr. Rietdijk opened the door. When I told him who I was and that I came to visit Sander he was quiet for a moment. Then he spoke. Sander died this morning he said. I immediately cried.

He invited me in. Sander lay in a hospital bed in the living room, a smile on his face and two oil lamps burning softly behind him. Wendy, his wife, gave me a hug, and his mother also. I was very moved. Even though I was sad, we each felt that he had been released from his suffering. There was a lady from the funeral services already there to go through the arrangements. I spoke with Wendy who seemed very natural, and at peace.

When I left I felt a bit empty. Once at home I called Emmy, who was now in a revalidation center and still has trouble walking. She said the same thing, his suffering has ended.

Yesterday we went to the cremation services in Den en Rust, a beautiful area in the woods of Bilthoven. There were so many relatives and friends, that we’ve attended the services outside the theatre. Even though we knew no one there except the family, it was moving to hear how Sander had been before his illness. Sander’s father read a very moving poem by Toon Hermans, Sander and his grandma had shared it often:

Sterven doe je niet ineens
maar af en toe ‘n beetje
en alle beetjes die je stierf
‘t is vreemd, maar die vergeet je
het is je dikwijls zelfs ontgaan
je zegt ik ben wat moe
maar op ‘n keer dan ben je aan
je laatste beetje toe.

(Free translation by Sheila:
you don’t die all at once
but each time a little bit
and every little bit you died
its strange but you forget
often you don’t even see
you say I’m just run down
but one moment will reveal
your last little bit is flown)

Fare thee well Sander. I will remember you.

After the ceremony we gave our condolences to his family. They were very glad that I had come, gave me a big hug and even wanted to comfort me too! They are very loving people. Amazing, how you can feel close to people you have just met. We are all in a similar unwanted situation which brings us closer together.

Posted on

Second opinion – continued


Yesterday – Monday October 29th – we had our second meeting with dr. Westgeest. He gave us his (and his team’s) opinion on my situation. He began by explaining that had I come to the VU for treatment after the first diagnosis, they would have started me on a taxane based treatment (like Taxol). But there are more ways to treat this disease. Unfortunately, when I was diagnosed, it was already far advanced and metastasized in the liver. The treatment AVL is giving me, directly to the liver may offer additional time if it works. Dr. Westgeest advised us to stick to this treatment and await the results. He confirmed that we’re in good hands at the AVL, which is a renowned cancer institute with the top specialists. He saw no need for additional checks later on. If at any time we’re not sure, we should ask dr. Baars, who can explain things to us. For now, we are reassured that this is the best course of action. We thanked him for his time and good explanations and left the VU. I felt reassured by his advice and am convinced the treatment I’m getting at the AVL is the best possible at this moment. Now we have to wait for the 14th and see if it has the desired effect.

 

Posted on

Second opinion


After I came home from the AVL, I was tired and spent the next few days sleeping, walking a bit and trying to get back some strength. Emmy (my neighbor from room A012 in the hospital) called me on Saturday and told me Sander had had bad news. Sunday morning Victor and I visited Sander in the hospital. He had been told on Friday that there was nothing they could for him. That’s a shock.  On the way out, we saw Wendy, his wife and wished her strength. Also on Sunday, Nancy flew over from London just to see me. She and my mom took the dogs out for a long walk.

On Monday 22nd October, we had an appointment at the VUMC in Amsterdam for the second opinion. The doctor who met us, dr. Westgeest, is a fellow in oncology and explained that he had gone through the dossier and wanted to ask me some questions. He also explained that the second opinion would be that of the team, not just his opinion. He had noticed that the second scan was taken with a different technique from the first, which made it difficult to compare the two.  Also, the liver had changed shape. He could not reach any conclusions based on what he saw, and proposed to do a new scan. But since I’m being treated in the AVL, he suggested to wait with the scan.

He was very interested, and listened well. He asked why we asked for a second opinion. I felt that the last results were somewhat unclear, especially the scan, which two radiologists and my oncologists all interpreted differently. Also, the treatment my oncologist had proposed (Taxol) and the one I was now receiving at AVL (Mytomycine) were quite different. So I want someone independent to review the choices and also to help me make new ones as we progress.

Since I was already being treated by the AVL, dr. Westgeest intended to call them, as well as Tergooi and our GP dr. de Bruin. He checked me physically and also needed blood results. A colleague of his is doing a study on particles in blood which may be used to diagnose or track cancer, and he asked if I would be willing to donate two tubes of blood. I agreed and waited for his colleague, Koen. Unfortunately, the nurses had all gone home for the day. Koen tried to draw the blood himself, but it didn’t work because my veins are so hard. So we agreed to return the next day.

On Tuesday, we went to the lab where Koen met us. I was helped right away by an experienced nurse. She had all the tubes filled in no time at all. That afternoon we went to a store in Bergschenhoek where I’d seen a comfortable couch. I sat on it and was sold. The couch will be delivered on Monday.

Later that day Victor received a voicemail from Dr. Baars from the AVL. She had gotten the blood results from dr. Westgeest and told us that the liver values had improved a bit. This is less than a week from the treatment, so I’m hoping they will improve further.

On Wednesday and Thursday my condition improved, and I started eating solid foods again. We received the good news from our friends Jasper and Alice that their son Arthur was born on Tuesday evening. Alice also has metastasized cancer and needs chemo. On Thursday dr. de Bruin stopped by to tell us she had spoken with dr. Westgeest and was informed of the treatment at the AVL. When we said we were worried about the cancer spreading, she said that the cancer is already in the body, and is unlikely to disappear, so it is a matter of time. She also said that different specialists have different approaches, AVL is focusing on the liver, which is the most urgent. Next Monday we have a second appointment with dr. Westgeest. And on November 14th, I have the second treatment at AVL.

This week I’ve improved a lot. I can take walks of about 20 minutes, I can go to the store, eat solid food again and talk. After three weeks of hardly talking, it’s nice to be able to talk and to eat again. Physically, I feel better every day. In the afternoons I get a bit tired, and then need to lie down for an hour or two. But otherwise I feel ok. It’s just strange that I can only look a month ahead, so making plans is not possible at the moment. But I’m enjoying every day and I try to enjoy the small daily pleasures, the sun shining, a walk, friends and neighbors who stop by. In short, just enjoying life!

Posted on

48 hours and counting


Thanks Victor for updating the blog while I was ill. Victor brought me my iPad this morning so now I can write about the last 48 hours.

I’m in a room with a view of trees and grass. My bed is close to the window.

There are three other patients in the room, all with cancer. The two ladies are terminal and will move to a hospice. One just turned 50 and is quite fit, but the cancer has spread to her brain. The other is a small woman who is very quiet and can’t leave her bed. The gentleman across the way is leaving tomorrow. I’m not sure what he has but he will go to the AVL cancer hospital for radiation.

When I came I was extremely cold, cold shivers. An hour later my temperature was 39.9. I got into bed right away and got warm blankets. A nurse took blood for the tests which they do when you have fever.

The doctor was very kind and explained they would put me on two antibiotics, one for the the throat and one general type. They placed the IV needle and started me right away. Victor left to get me all the things I would need for the night.

The antibiotics are given at 10 and12 pm and the IV pump has an alarm that goes off when it’s done. I slept little that night. Thursday morning I woke with pain in my mouth. At 6 the new antibiotic is given. At 8 they come by with breakfast. Since I can’t swallow, I’m given a nutridrink which has plenty of nutrients and calories. It still is hard to swallow and it takes me all morning to finish one bottle of 200 ml. What helps is ice, a waterbased icecream. I had visitors, my friend G came by at 10.30 but since it was outside of visiting hours her visit was cut short. My mom came in the afternoon and Victor came at 18.30, Ingrid came at 7. I still have trouble talking.

At night again trouble sleeping. I can fall asleep but wake up easily due to the IV alarm, noises around me etc. In the morning I woke up with a swollen mouth.

Today was a trying day. The morning was alright. The nurse helped me and asked the doctor to look at my mouth. I have oral mucositis which is common among chemo patients. It is something that heals on its own but is very painful. I drank two nutridrinks and ate a pudding desert.  I did manage to go outside around noon with Mariette my roommate who wanted a smoke. It was nice to get some fresh air.

The doctor came by with the specialist internal medicine and she prescribed painkillers. Victor was worried about my treatment and came to speak to the doctor. He confirmed what we know which is that it takes time to heal from the condition I have, since my resistance is terribly low.

Unfortunately for me I reacted very badly to the painkiller medicine. I started to vomit uncontrollably, but since there’s no food in my stomach I vomited slime with some mouth lining. It left me pretty shaken. The nurse gave me anti-vomiting medicine through my IV and that helped. I’m now on paracetamol (acetominaphen) which is fine. It doesn’t relieve all the pain but it makes it a bit easier to swallow. I sometimes cough suddenly when there is saliva stuck in my throat. I have a lot of saliva but it hurts to swallow it so I spit it out a lot.

Now I’m feeling a little better. I guess I have to be very patient and resign myself to the fact that I’m stuck on liquid food for the next few days.

Posted on

Chemo #4


So turns out the numbering I used is a bit different from the hospital. I’ve had 3 chemo’s, spread out over 9 weeks, which they number 1a, 1b, 1c, 2a, 2b, 2c and 3a, 3b, 3c.

So yesterday I had number 4, all at once. The Adriamycine (Doxorubicine) which I first got in packets of 20 ml was now increased to 94 ml. Which funnily enough took the same time, about 15 minutes. I felt a slight tingling in my nose and watery eyes but otherwise I felt fine. The Cyclofosfamide (Endoxan) was the same as before so hadn’t changed. This saves me from having to get my veins pierced every week, which makes them harder for the nurses to put the IV in and to take blood. I don’t have to get my blood checked until october 8th, so that’s a relief and a big time saver!

So far so good. My mom and Nancy had taken me to the hospital yesterday, and despite being the last one to get the IV, I was the first to leave. This time, I had only male companions, one of them I saw three weeks earlier with his wife, who is very kind. No one wanted to sit on the bed, so I volunteered. It doesn’t matter much to me, I get to take my boots off and you can move the back up so it’s quite comfortable. I have a feeling the reason men don’t like the bed is because they’re afraid to take their shoes off (although you’re allowed to keep them on). My mom bought me Marion Zimmer Bradley‘s novel The Mists of Avalon, which I read more than 20 years ago. And although I’ve watched the movie many times, it is still a delight to read.

Although they serve lunch, I had brought my own sandwiches with vegetarian filet americain (yes its good, and contains lots of protein) and a banana. Still, afterwards we ate lunch and shared a big mozzarella sandwich and I finished a large smoothie. All in all I’m doing my best to keep eating healthy and calorie-rich.

I’ve decided to start creating clay scultpures again. Apart from this past year,  I had been attending sculpture classes in Laren (next town, 3 km from our house). They were fun to attend, but the time was rather late: from 7.30 to 11 pm every wednesday. I asked my teacher if I could bring the sculptures in to get them fired and that was no problem. So my mom and Nancy drove me to the store (de Hazelaar in Soest) and I selected a 10 kg block of clay (grove chamotte) and some tools. So hopefully I’ll find the inspiration to make something beautiful!

Nancy likes this group of elephants I made two years ago, its fired in clay but we’re considering making a mall and having it cast in bronze :

 

 

 

 

 

So although I feel okay today, I expect that I’ll feel worse tomorrow and Saturday but we’ll have to wait and see! Thanks again for all your thoughts and best wishes. Take care!

Posted on

Meeting with the oncologist, Sept 13, 2012


I was so nervous last night that I couldn’t sleep. I had itchiness all over the past few days and was worried maybe the billirubin had risen.

This morning we had an appointment with the oncologist dr. van den Berg. He is a very empathic, amiable and knowledgeable oncologist with a good reputation. Dr. van den Berg greeted us kindly and invited us into his office. He asked me how I was feeling. I said I was feeling much better now that I had the antibiotic for the infection and no longer have fevers. Of course I have some minor side effects which cause minor discomfort, but on the whole I feel fine, and don’t have problems such as nausea or vomiting, what many patients experience.

Dr. van den Berg told us the billirubin had stabilized at 22, which was good because normal values should be between 17 and 19. He said the liver had stabilized enough, so the chemo had worked and the liver was functioning as it should.

The CT scan showed that the liver has not yet decreased in size. Also the tumors have not decreased in size or number. But the color of the tumors had changed; they are now a dull, vague color, whereas they were very clear before. This means that they have stopped growing and are no longer expanding. The tumor marker he is tracking is CA 15.3 (CA stands for cancer), which is measured in the blood. The tumor marker has decreased, meaning the tumor is no longer growing. Also, there are no new metastases outside the liver.

Dr. van den Berg said he was moderately optimistic. He said this has increased our chances and has bought me time. He explained that he wants to increase the dosage of the Doxorubicine (Adriamycine) which is the chemo that targets the breastcancer. This is the chemo that was given to me in a very low dosage over 3 weeks, because of the possibility that the liver couldn’t manage it. Now that the liver is functioning normally, he feels it is safe to increase the dosage to more than 3 times what I was getting up until now, which will help to reduce the cancer cells in my body, specifically the liver, but also the breast. We will change to a cure of three weeks, which means one week chemo and two weeks recovery time.

I will start with the new cure (both Adriamycin/Doxorubicin and Cyclofosfamide) next Wednesday (19-9), and will come back to see him in four weeks time (15/10). For now, we’ve got the second cure planned on 10th of October, with a visit to dr. van den Berg on Oct 30th. A new CT scan will be planned just before, unless the blood values are enough to see the progress. Once the cancer is diminished in the liver and the liver is back to its normal size, he will see what we can do about the tumors in the breast and lymph node. For now, the focus is on removing the cancers from the liver as much as possible. Dr. van den Berg believes the higher dosage will have the impact that is needed. So, the new round of chemo will have to do the job! I’m am happy that this round of chemo will be much stronger and – I’m assuming – more effective. I’m sure it will impact me much more than the previous round, but I won’t have as many needles stuck into me which will help because my veins need a bit of a rest. I don’t know how many rounds I will receive, but that will depend on the initial results.

On a lighter now, I just wanted to share with you a line from a movie which we borrowed from Marita, our neighbor. The movie is the Best Exotic Marigold Hotel: for the elderly and beautiful which is a wonderful film about several British people who – for very different reasons – decide to relocate to a hotel in India. Of course, the hotel is nothing like the brochure (“It is a vision, ma’am”, explains Sonny, the young hotel manager, “of how it could be.”). But each guest (and Sonny too) copes in his or her own way, and discovers something important to them. What Sonny tells his guests (and himself) is a life lesson in and of itself: he says “It will all be all right in the end. And if it is not all right, it is not the end.” And that’s how I see it too!

So the next weeks I will probably have little news, but I will keep you posted of how I feel. Thanks for all your lovely comments. I cannot reply to each of you individually, but I am moved by your positive thoughts. Take care!

Blog at WordPress.com.