Not what we had hoped for

The last chemo hit Sheila very hard. Although the CT scan showed that her liver had become a bit smaller, the effects of the chemo were hardly noticeable. It seems that the cancer is growing again. Her oncologist suggested that she would get an other chemo named Taxol as soon as her health permits this treatment. Next tuesday her case will be dicussed with doctors from the Anthonie van Leeuwenhoek Hospital.

Last friday we’ve requested a second opinion by the VUMC. We got already their reply that they will take up contact with her oncologist to request her file.

Last wednesday we thought Sheila would be home this Sunday, but two days ago we were told that it would be probably next Tuesday. Meanwhile, her condition has not been improved considerably. She still suffers severe mucositis, has difficulty with speaking and her body is swollen because of fluid retention. Also the fever has returned and she developed an allergic reaction (rash) on the antibiotics.

So far the bad news. The good news is that her immune system is recovering slowly.

Sheila’s mind is still unbeaten and she is convinced that the love we feel for each other will cure her finally.

Hospital treatment.

Yesterday (sunday morning) I had to sit in a chair to measure my weight. I now weigh 56 kilos. A week ago I weighed 50 kilos. My belly is twice wat it was and also my legs look like they belong to someone else. Fat ankles and thick thighs. Nothing like my former self. Well, the doctor prescribed diuretics which were added to the IV but they haven’t had effect.

Swallowing is still difficult as is talking. Nancy came in the morning and again with my mom in the afternoon. I had selected a meal but it turned out that I still can’t eat food, mostly because my mouth is sore. I also felt short of breath and anxious.
Eveline from the Zontas came and gave me a Zonta pin, which is very nice and some fig jelly from Italy, and a plant.

Victor came at 6.30 pm. One of the problems I have is an excess of saliva. According to the doctor this is because my mouth is very irritated. I have to spit it out, but this is hard to do when you’re sleeping, which is one of the reasons I haven’t slept much. We asked the doctor about painkillers and he said he could prescribe them if I wanted them, but chances are that I would react badly to them, since I couldn’t bear the tramadol I was given before.

One of the nurses had given me a special mouthwash specifically for oral mucositis. It reduces the pain and irritation by creating a layer of protection. I’ve been using it since then and I think it helps.

After Victor left I went to sleep, which I needed to catch up on. I woke every hour but was still able to get some rest. At 11 I was given a sleeping pill which I took and which helped me sleep through the night.

This morning when I woke up, I had pain in my mouth, but less than other mornings. I drank ice water and noticed the swallowing was less painful. I felt much better than yesterday. I still cough a lot, probably also because the air is super dry here.

I think the strepthroat may be gone (its hard to say) because my throat feels better. The only things that hurt now are my mouth and swallowing. Hopefully the recovery has set in.

The new doctor introduced herself and has told me she will do something about the fluids that I’m retaining. She later explained in the hallway when Victor was here that I have a low red blood cell value which needs to be improved by adding blood. The white blood cell count is slowly increasing. Tomorrow we will hear more, I hope.

Victor is not pleased at all with the way I am treated in this hospital. So he called the oncology nurse this morning who was also surprised to hear about my current state. She will schedule a meeting with my oncologist and us tomorrow.

My red blood cell count is very low so the doctor arranged for blood. I’ve already had two bags and the third one is coming.
Thanks to Roxanna the nurse on duty who didn’t trust the sounds coming from my stomach, the night doctor examined me. He was the day doctor last week and he confirmed my belly was much smaller. He’s been very helpful all week. He pressed down on my stomach and it hurt. So he said he will consult the oncologist on duty and draft a plan tonight. I will get an echo tomorrow.

Down’s and Up’s

It began yesterday. By the end of the day Sheila became tired and felt more and more pain in her throat. She tried to sleep, first on the couch but later she went to bed. However, she could not sleep and in the middle of the night she took an Ibuprofen. That was not a good idea. It stuck in her esophagus and the pain got worse. Initially we thought she had Candida, because her tongue and palate saw white. She could not talk anymore because of the pain. Around 7 in the morning I called the house doctor services. They could not help, so I called the specialist in this field and we arranged an appointment at 9.10. A clinic nearby the hospital. The doctor examined Sheila and stated that there was no sign of candida. But she could see that her throat was red and pretty swollen and she was developing fever. In the meantime Sheila was shivering and looked more and more worse in the eyes of her observers. The doctor advised us to go to the hospital (merely around the corner) to take a blood test, at least. With the latest experiences in mind, Sheila refused to go to the emergency services. We were convinced that the studies of a few days ago (which took more than three and a half hours) would be re-executed, resulting in the same conclusion: ‘we cannot find anything’. We went to the outpatient oncology. The attending nurse retrieved Sheila’s file and consulted her oncologist. Sheila was shivering more and felt really bad. She could only whisper and stopped talking finally. Her blood was taken and she got a bed on a ward. Her temperature had been risen to 39.9 degrees. After a few hours we got the message that she suffered neutropenia: the chemo had flattened her immune system. She received intravenous antibiotics. Meanwhile, she send me home to buy some initial requirements. I bought a small suitcase (of course, the one we just had discarded!), underwear, bathrobe, sleeping shirt, socks, you name it, etc., etc…Meanwhile in the hospital a lung picture was taken from her. When I came back she was still in pain, in spite of the intravenous antibiotics and pills she got. No real doctor seen or spoken yet, no complain. Sheila ordered me to get more analgesics. So, I bought dissolving paracetamol at the pharmacy of the hospital. That was a real relief for her. Pfffft. I cannot stand that my love is suffering in pain while everybody around her is busy with procedures and protocols that take a real lot of time and solve nothing concrete for her sake. Due to an empty battery of my phone, I was unable to take a picture of her lying, but now smiling in the bed of the hospital. And by now her loving mother is with her!

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!

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!

Week 8

Dear friends and family,

I’m a bit late with my blog this week.  Because I’ve lost weight my pants don’t fit anymore. So on Tuesday I treated myself to two new outfits, which are colorful, casual, and stretch.

On Wednesday I shared a room with the man who – the week before – had to sit on a regular chair because the good chairs were all occupied. Later on he was moved to another room where a chair became available. This room only had beds, which no one likes because it feels like you’re sick. But I got used to it quickly. Fortunately the back of the bed could be placed upright, kind of like lying on the couch.  The man next to me was very talkative, and he enjoyed talking with Victor. He is a local architect who lives and works in Laren, but he knew all about Eemnes.

Just after I arrived, the hospital dietician came by to see me. I had asked for some dietary advice to regain some weight, since I now weigh 49 kilos, having lost 3 kilos since July 23rd. Her colleague had called me a few days before and gone through some of the options, and now she was here to talk with me about my eating habits and ways to gain weight. Basically, my eating habits are relatively healthy, but don’t give me enough calories. So I have to eat more food that is high in calories, cream, ice cream, candy bars, more cheese, anything to increase the calories in my daily intake. It’s actually quite a challenge for me to change my eating habits. The architect next to me told me that all cancer patients have the same problem. He had lost 18 kilos and was actually proud of his new six pack when he got the news that he had cancer. He ate 4-6 candy bars a day to try to gain some weight. Like me, he and his wife ate vegetarian, so he recommended making pasta with mushrooms and cheese. This time the lunch cart came by while the dietician was still with me, so I decided to eat some food: a slice of bread with two slices of cheese and fruit yoghurt.

Carina – a nurse who has helped me before and who is very good – took care of the IV and after an hour and twenty minutes I was done.

That night I had a fever again. And every day this past week, usually around 38.3; not high enough to call the hospital. Usually I sleep it off, which means I’ve been sleeping three hours extra during the day. The rest of the day I do very little, I read a book, I watch a movie, and most days a friend or a neighbor stops by to see how I’m doing. Yesterday, Victor heard from the hospital. They found an infection in my urine; an infection of the urinary tract. He picked up the medication from the pharmacy.

Today I had a fever again, so I went to sleep at 10 even though I had just gotten up. A very strange schedule. Right now I’m anxious about next week. On Tuesday I have the CT scan and on thursday we will hear the results from my oncologist. Wednesday is the last chemo of this 9 week schedule. So next week on Thursday I hope to have good news! Take care and till next week!

Treatment #4 – August 8th, 2012

Today I had to start at 8.30. The two gentlemen (patients) who had been there the first time I came were already in the room.

I had a new nurse. She was cheerful and efficient. Unfortunately the needle wouldn’t go all the way through so another nurse came and slapped my hand a few times (makes the artery  stand out more) and put the needle in my hand. I felt that a good deal more than the wrist, so next time I’ll ask them to try the other arm. I told her I didn’t need the cold cap anymore.

Since my hair is leaving my head at an alarming pace, I’ve decided to shave it off today. Yes, dear friends and family, its a shame I couldn’t enjoy this hairstyle longer, but once my hair grows back, I will ask my hairdresser to cut it the same way.

Not doing the cold cap takes an hour and a half off the schedule, so this is much quicker. Before 11 we were done. Victor took me to Baarn where I bought some cotton underwear. I have a skin rash from the chemo and all the polyamide underwear I have isn’t comfortable anymore. To my surprise, there was a hat store in Baarn which was having a going out of business sale. The lady helped me very kindly and I bought a scarf and a wool hat.

So today I’m cutting my hair off and shaving it. Perhaps I’ll post a photo soon.

Treatment #2 – July 25th 2012

What a beautiful day! Wonderful to be in the sun, each day this week has been such a blessing. I love the sun and had been missing it the past few weeks. But this week has more than made up for that.

Nancy came to the hospital with me at 11 am. The nurse came to get me right away, she is very nice and its a very pleasant place. The room has four chairs, today a nice lady across from me lay in a bed. The full length of the room has large windows which offer a beautiful view of the garden, grass and trees.

I had the same chair as last time and again the nurses struggled with the cap. It seems I have a very small and oddly shaped head. But it’s worth it because the cold treatment has so far worked to keep my hair on my head. Like they say, you have to suffer to be beautiful. I never quite saw it that way before. And the suffering isn’t so bad. My ear was a bit crushed but otherwise I coped quite well I daresay! Fortunately it was a warm day, it must be much worse to have your scalp frozen when it is freezing outside.

I read a Ville d’arte magazine which was full of wellness and wellbeing articles. Several were about detoxing using fresh veggie juices. Nancy and my mom have been juicing all week for me. My favorite is the beet juice, but the first time I peed after I drank it I thought all the chemo had instantly left my body (its nearly the same red color). Good thing I remember I drank a bottle of the red juice just a few hours before. Now it turns out raw pumpkin juice is very good for your liver. I have a whole stash, also spinach and broccoli. They’re surprisingly tasty, almost addictive!

The chemo was done in half an hour, the cap needed to stay in place another half hour but at 12.30 we were done. I had accidentally taken my pills for schema 3 (whatever that means) but it turned out I only needed those for the first cure. Since this one is so light, I don’t need any medicine at all. Just in case, I have pills for nausea but since I can eat whatever I want without even a moment of regret I feel very lucky. Next week I’ll be back!

Victor and I made a bucket list – inspired by the movie starring Jack Nicholson and Morgan Freeman. A great movie to watch if you haven’t seen it yet. It showed me that there’s much to be enjoyed in sharing something together. When I was working there never seemed to be enough time. And now I intend to enjoy every minute of every day with the people I love the most. Here’s my bucket list:

1. cycling in the sun
2. sailing on the lake (loosdrecht) nearby in the sun
3. having a drink outside in the sun)
4. weekend Madeira (flower island)
5. long weekend Barcelona/Girona
6. citytrip Hamburg
7. Marienwaerdt 15 augustus (castle fair in Holland)
8. citytrip Lissabon
9. San Francisco (next year)
10. Peak district UK
11. Danor review (book I wrote long ago that I’d like to publish, so if you have any tips, let me know)
12. vegetarian cooking
Much to look forward to! Take care all!