Grasping at straws.

I’ve felt very weak and tired and have mostly been in bed the last couple of weeks. Been suffering from heart failure and haven’t been able to go outside of the apartment as I have been so extremely short of breath. This went on for three weeks and I finally started to feel better, but on Maundy Thursday, I was admitted to the hospital due to heart fibrillation, a very high pulse and fever. Have been there since then and my pulse is still about double of what it normally is (around 120-130 bpm) and I need to take medication to try to keep it down.

However, this would prove not to be my biggest concern. For the last month, my thrombocytes (blood platelets) have been decreasing and they finally decided to take a new bone marrow sample to see if there was leukemia in the bone marrow again which could explain this. On Friday afternoon I found out that there was and the chances of me surviving are thus very low. My doctor said that they would be “grasping at straws” trying different treatments. And, if they would manage to get rid of the leukemia, I would still have to go through a second stem cell transplant. Even though I knew the odds weren’t really on my side before this, it still feels very difficult to take in. I could die very soon, without successful treatment, I have about three months.

I had to talk to my doctor regarding my take on resuscitation and life support measures and my answer is that I don’t want any of it. I wouldn’t want to wake up with tubes in me and most likely just be waiting for death to come. So, things are looking really bad at the moment and my biggest fear is that I will just get more tired and weak and not being able to feel like myself anymore before I go. It scares the h*** out of me.

Chemo is not working.

The last body scan I did showed that the last two chemo treatments have not been working. Instead, the tumor has even grown slightly since January. I wasn’t expecting anything when I met up with my doctor a week ago, so I wasn’t really surprised. But it’s not good news of course. As tougher chemo can be lethal due to my heart condition, they now want to use radiation to shrink the tumor first before they go any further.

The good news is that they are still continuing treatment, so the doctors have not given up. I have not been given a death sentence. Not yet. I asked my doctor what would happen if the tumor just keeps on growing and he said that most people with the same diagnosis have died of cardiac arrest due to heart fibrillation. Then it would be over in a second he said. So, should I be scouting for burial plots, sign an agreement to donate my body to medical research or draw up the itinerary for my funeral? It’s hard to know how much one should prepare for a possible imminent death. Or rather how much one actually wants to. In a way, it gives me some sense of control to think about it.

Most of us live with the illusion that we are immortal or at least that death does not concern us; it happens to other people. And when we hear of someone who is very ill, it is easy to deceive ourselves that we can stand on the sideline and be spectators. However, the truth is that anyone of you reading this may die before I do. Of course, the probability that I will die ahead of you is much higher, but statistics do not mean anything to the single person, it is only applicable on an aggregate level. Now, I’m not saying that to scare you, only to urge you to think about your mortality from time to time. Are you happy with what you are doing or would you change something if you could? Do not assume that what you have now will remain, everything can change in an instant. Yes, here I go with the clichés again, but it doesn’t make it less true.

Have really been struggling with a feeling of meaninglessness the last months. If it is all over soon, what is the point in trying to live? But then, that trail of thought could also be applicable to my whole life and is life then meaningless because we all die in the end? I don’t think so. Although I find it hard to be completely convinced. It’s daunting to think about the fact that if I would go soon, many of you would probably live on for another 50 years. That does make me very jealous to be honest, but I don’t reproach you for it. I wish everyone a long and happy life. I’m just hoping that I will also be able to stick around. And with that said, I guess I really don’t deem life meaningless.

Bad things happen to people all the time. People die every day whether due to illness or someone wanting to inflict harm such as in armed conflicts, terrorist acts and assault or simply by a freak accident. But I can’t help wondering sometimes if someone is out to get me. First by giving me AML, a rare diagnosis for a woman my age (AML is most common among men above 65) and then when that didn’t work they placed a malign tumor in my heart, which is even more rare. But I don’t believe that there is anyone doing this to me, even though it sometimes would feel great to have someone to kick and scream at and make them tell me why this has happened. It is just bad luck and frankly, if this is what will kill me, there are worse ways to go.

To conclude, I want to recommend you to watch the program A time to live (BBC, 2017) about terminally ill people and their thoughts on life. You find it at or via Swedish UR Play.

Dear all.

It’s been a long while since I wrote something and a lot of people have written and asked what is going on and how I am. During the last month, I haven’t had the energy to keep in touch with everyone as I did in the beginning. I’ve needed time for myself to recover from the first chemo treatment. A lot of things has been happening, but I will not go through them here, I will keep it to myself, at least for now. That is not to say that I haven’t talked with anyone at all, I just don’t feel like being as open with everything as I did before.

In mid-January, I had a second treatment, this time with injections during five days along with tablets in the morning. This treatment did not hit me in any way as hard as the first one did. I haven’t even become neutropenic (basically having zero white blood cells, i.e. no immune system). I have a “normal” cold at the moment, but nothing that means that I need to be hospitalized. The same treatment will start again on Monday, however, they say that you usually get more sick the 2nd time, especially the nausea can get worse, so that is something to look forward to.

The doctors’ plan at the moment is to do the injection treatment two times at first and then one or two more if needed. Then they will decide if we should try radiation if the tumor isn’t gone. They have told me that there is a risk that there are tumors in my body that they still haven’t been able to detect on the X-rays and therefore they want to treat my whole body with chemo rather than referring me to the radiation clinic where they would only be focusing on my heart.

I do appreciate all the support I get, but there will be unanswered messages I’m afraid and I hope no one takes offense. If I do not answer, it is nothing personal. It is and has been very tough. More so than the first time I was diagnosed and there are a lot of things to deal with.

Good morning.

Sitting at our kitchen table surrounded by different types of medicines, saline solution and anticoagulant shots. There is a lot to keep track of during the day when you’re at home and don’t have someone coming in to your room whenever it is time to take some pills. Harald has learned to give me shots twice a day. My brother flushes the Midline in my arm (venous catheter) three times per day, I’m taking antibiotics three times against the pneumonia it turned out that I have, plus other pills morning and evening.

I managed to get rid of almost all the fluids that I had retained when I was in the hospital, so now I am just a bit swollen, but I am having a hard time getting fluids in to my system. My taste buds have changed drastically and water tastes horrible so I cannot drink it. The only thing that goes down is yogurt, cold blueberry soup and Coke Zero (regular coke tastes bad). I have really tried every drink there is but they all make me feel nauseated. I can drink 0.5 dl of water if I put in ALL the juice from one lemon. If I add more water, I can feel the taste of water and I can’t drink it…

I am starting to get more food down, but that is also a huge problem when it comes to taste. Things smell and taste differently and some things I can eat once, and then no more. I try to eat foods with a lot of water such as peppers and cucumber, but it will never be enough to replace water. 1,5 week ago I ate a lot of water melon, but I can’t eat that anymore. I get a craving for something and I eat only that until it just stops tasting good. Not drinking enough makes me very tired and it’s terrible to feel thirsty all the time.

I got signed out of the hospital on Thursday the 27th. I have an appointment this coming Thursday (January 3rd) to discuss further treatment. Right now they have three alternatives; to give me the same chemo as the first time, to give me ordinary chemo (which means losing my hair again) or radiation. Right now I feel that I really do not want to do another round of chemo. But I guess if they say that is my best option I suppose I probably will…

These past few days at home have been very good in one way as I have been able to be home and spend a lot of time with my family, but at the same time it has been really tough knowing that this is not the end of the treatment and that all that is left is to rehabilitate and get back to my ordinary life. It is such a long way to go (if they will even be able to cure me) and I have been having a lot of death anxiety and it is hard to manage. A lot of the time I find it difficult to really be happy about anything at all and I’m wondering what I will do if they say that they cannot treat me anymore.

I still stand by everything that I have written before and that I can accept that I will die at some point or another, it’s just that when I have been so sick and feeling horrible physically this past month, it is difficult to fathom how I will cope if that would continue to the end.

What a ride…

The nightmare continued until Saturday. I was really bad mentally. Completely drained of energy and did not want to do anything at all. I even contemplated just stopping the treatment all together. No more needles. No more tests. No more IV. No more antibiotics. I was so sick of it all. But luckily it turned around. Not to say it might happen again, but at least I feel a whole lot better today. I even got official leave from the doctors and could go home in the afternoon. I’m hoping to even stay at home during the night, but I need to be back before 10 tomorrow morning.

So, from me to all of you,

A Very Merry Christmas!🎁🎄

It was never this bad last year.

It really wasn’t. Sure I was nauseated for a longer period, but at least I had some relief during the day, or when my gums swelled up and I looked like a chipmunk, it only lasted for a couple of days. But these past 10 days have only given me short periods of pain and fever relief. Otherwise it has been going on non-stop.

I’ve continued to gain weight because of fluid retention. +12 kg. My legs are like logs and my ankles are so swollen. I do not recognize myself. Since ice cold water or other types of liquids is the only thing that helps me as an instant pain reliever when my mouth has been hurting, I have been drinking a lot myself and have now been restricted to a maximum of 1,5 liters of fluids per day, which is very hard for me as water is the only thing I am really craving. The doctors say that since I keep running a fever and my blood pressure may drop, it is better to have extra fluids though than too little.

The pain in my mouth has increased. I cry from pain every day I wake up. This is a tiny bit better since yesterday though, but I must keep eating quite high doses of morphine and this has really affected me. I have been hallucinating, seeing animated things in the room, especially animals. I’ve also seen people in the room. I have always known it hasn’t been for real, but it is still unpleasant. The most scary thing has been that I have been talking nonsense at times and also that I forget things and that I cannot focus. Sometimes I have had to rewrite a text message five times before it makes sense. I fall asleep easily, or I sort of phaseout and I instantly start dreaming or thinking about something. I can never remember what it’s about, just that it makes me feel uneasy. Tried to stop with the morphine on Friday and started scaling it down. It worked for about 24hours and then it was unbearable. Yesterday, I wasn’t able to speak for a couple of hours as it hurt so bad.

The insights I have had about death and what I want to do with the time that I have left has not changed. I still feel calm when I think about it and I have started planning my funeral, something that actually does not feel that strange at all. But if these are my last couple of weeks, couple of months, I really don’t want to feel this way and it makes me scared knowing that the next treatment is a scaled up version of the first one and if this is the way my body reacts to the first “milder”  treatment,then how is it going to cope with the aftermaths of the second one…? I do not believe that treatment is always better than no treatment. First, you need to be presented with the facts and the alternatives. Something I am not so sure that the doctors can give me at this point.

At the moment, I do not know if I will even come home before the next treatment starts. As my white blood cells aren’t back and since I can’t get rid of this fever (the doctors do not know why that is) they can only speculate and hope that I will be better at the end of this coming week, be home for Christmas and then being readmitted. I do not care any longer whether it is specifically during the Christmas days that I will be at home. I just want to have a couple of days without a fever, without morphine and without feeling like crap.

Four horrible days.

On Wednesday afternoon, I finally got to go home. My white blood cells had already disappeared though that same day, a lot sooner than they had thought, so I knew I was highly susceptible to infections. On Friday morning, I woke up with a fever and had to go to the emergency room. My blood pressure was extremely low (like60/50 compared to 100/75) and they took me in to their trauma room where one doctor and three nurses attended to me, drawing blood, giving me antibiotics and IV-fluid. A doctor from the infections unit came by and suspected that the cause was an infection in the wound from my pacemaker and they said that they might have to take it out the same day. I did not like the sound of that…

Fortunately, when I came to the hematologist unit, they were not as convinced that the pacemaker was to blame and now four days later they have more or less ruled it out (even though they are still keeping an eye on it). But, since Friday I have been running  a fever more or less the whole time, except for a couple of hours on Saturday. Been chattering my teeth and freezing while lying under four covers, only to start sweating like crazy an hour later. On top of that, my non-existing immune system has caused me to get blisters all over my tongue that have been hurting like… Have been prescribed morphine that I am eating several times per day, it has really been unbearable. Today it took me 1,5 hours to eat two pieces of bread for breakfast as I had to drink ice water all the time to numb my tongue.

Since my blood pressure has been so low, they have filled me up with IV-fluids which has made me very swollen, I have put on 5 kg since I got here on Friday. I am also very swollen in the lower part of my face due to the infection in my tongue and tonsils. Hoping to get rid of the fever so I can go home for the weekend at least. My pulse is really high (due to the fever), but also because of the pacemaker. I have always had a very low pulse so it is weird that my heartbeats a little faster than normal and it will take some time to get used to.

I also have something called heart flutter, which basically means an irregular heartbeat. This is something they may need to address by giving me medication, but nothing is decided yet. There was a nurse here from the pacemaker unit and she could see this straight away when she looked at my pacemaker data. She connected to my pacemaker via this object that she put over the pacemaker and then she could go in and look at all the activity since last Tuesday when it was put in.

This afternoon or tomorrow they will be performing an X-ray to evaluate whether the chemo has had any effect on the tumor. What they’ve said is that initially,they just want to make sure it hasn’t grown and it may be too early for it to have decreased in size.

Pace in place.

Finished about an hour ago. All went well. They did not put it in via the neck though, just below the collarbone. Two cords are connected to my heart.

I was a bit anxious last night and this morning, not that it wouldn’t go well, I just hate the thought of someone cutting in me while I lie there knowing what they are doing. And I also get very nervous that it is going to hurt. The anethesia shot hurt, but it’s not like it is the worst pain in the world. It is more the anticipation of pain that I find difficult to bare. But it was over quickly and they asked me if they should play some music and whether I had any requests.
I said “Christmas music” and without saying anything more, She & Him started playing and I felt calm straight away listening to Zooey Dechanels voice.

Now I am under surveillance for about four hours at the cardio unit and then I was supposed to go home, but the hematologists want to keep my at their unit at least until tomorrow just to make sure my blood values do not drop rapidly or if I would suffer any bleeding after the surgery. Ah well, will survive here a couple of more days I hope. At least now I do not need to experience drop in puls, missing heart signals or cramps and heart palpitations which have been going on for the last few days.

Getting a pacemaker.

Or a ”pace” as my cardiologist says. Lingo. I’ve been having something called asystole which is basically a form of cardiac arrest, but the difference is that the heart starts beating by itself again. You feel lightheaded and it’s best to sit/lay down in order to avoid falling over. I feel a small pain in my head, but I wouldn’t have thought about it all if it had happened at home before all of this. And, most likely it has been happening to me before I came to the hospital. As I am monitored via EKG 24/7, they see everything. Asystole is something they refer to as a benign signal disturbance and it occurs in one of two electrical knots in the heart. This one is situated at the “edge” of the heart. If it occurs in the second knot, which is in the middle of the heart, that means full cardiac arrest with a possible lethal outcome. That is NOT what I have though.

It happened the first time last Thursday night and there was no heart signal on my EKG for seven seconds. Then it happened again yesterday morning and so they decided not to take any chances. It is more however a precaution for the next round of chemo which will be stronger than this one. The pacemaker will be put in sometime during Tuesday, and then I get to go home! Can’t wait. It takes about 30 minutes, they put it in via the neck (how cool is that?!) and then it’s finished. The doctor said that if I would have been having these interruptions without having a tumor in my heart and without experiencing fainting, they would not put in a pacemaker at the moment. So, it is just to make sure that nothing happens further along. If they don’t put it in now and then realize I need it during the next chemo, they would probably have to stop the chemo and wait for my immune system to go back up and then continue the treatment. This would not be ideal of course. I trust my doctors to make the best decisions they can, even though they can never guarantee anything, but I feel safe here.

Otherwise I am starting to get very bored. Been here for 2,5 weeks and will be exactly three on Tuesday when I get home. I want to go outside and also to be in another environment than these brick buildings (think stereotyped Soviet Union buildings) with its sterile interior. But as an ambulance nurse told me two weeks ago: if you are very ugly on the outside, you got to be real nice on the inside and that is very true as far as all the hospital staff goes. My doctors and all the nursing staff are the best. Could not cope without them.

Just finished up to my ninth bag of chemo, tomorrow it will be over for these first ten days. At least the liquid is clear this time, looks like an ordinary IV fluid. The first round of chemo I got last summer was orange. Made me nauseated just by looking at it.

If I have enough strength next week at home, I will be spending my time decorating for Christmas, doing arts and crafts and drinking hot chocolate with whipped cream. And singing and listening to Christmas music. No surprise there for those who know me well.

My first single is almost finished in production and I can’t wait to share it with you! Will be getting help from my friend Alina with making a cover and I’m hoping to also make a video very soon. Always been a dream of mine to do that, so it would be great to fulfill it.

Thank all of you for reading and for commenting. It is important for me to be able to be honest with everyone about what is going on and it is so valuable to be open and frank about how I feel. It is an important lesson to be learned and if I survive this, I really want to maintain this focus and clarity that I feel that I have at this moment.

PS. I am putting out a warrant for Cage dark. Who are you??? I am so intrigued!

Starting my seventh day of chemo today.

So far so good, no nausea and very awake during the days due to cortisone tablets I’m taking both morning and night which makes me wake up very early (around 5) and then I can’t sleep. But at least I’m not constantly tired all the time and I can always sleep during the day if I need to. When people ask me how feel, it is weird to say that I am actually feeling quite well considering. I am constantly supported by everyone around me and it feels fantastic to have the access to these treatments that I am getting, even though they are not all that fun to go through. Am so grateful for Swedish medical care and all research that has been done all over the world.

The rough plan (which can change at any time) is to finish the first round of 10 days with chemo this Saturday (December 1st). Then the idea is that as long as there haven’t been any more complications with my heart, I will come home next week. A new MRI (not sure yet when they will do it) will show if the treatment has had any effect and I may need a second time of chemo in about a month and then IF radiation will be an alternative, this will start in about two months. My first goal is to be able to stay home for Christmas at least, but there are of course no guarantees. My immune system will go down in about a week or so and I will be susceptible to infections again and I may need to go to the emergency room if I get a fever. But as long as I can be home a while at least, I will be happy.

My days are spent thinking a lot about life’s philosophical questions. What are we here for? What happens when we die? Why do some people have to suffer whereas others do not? It is extremely important to me to discuss this and to accept that death may come soon and do the best of the time I have left. Of course I do not want to die this relatively early in my life, but the only thing I can do is to try to feel at ease with the cards that I have been dealt and not dwell on it too much.

In one way, I feel as though it is easier to be the person it is happening to, rather than being on the side and trying to support someone else. Not sure I would be able to cope as well. Now, I have the mandate to more or less dictate what I want my family and friends to do and let them know what support I need. The most difficult part though is not being able to control how they will all feel if things will not go well. But I am trying to accept that it is impossible for me to do so.

As the tumor is malign and as it is caused by my leukemia, it is not possible to get rid of it by doing a heart transplant for example. This would not cure the leukemia even though the doctors haven’t found that it is anywhere else in my body. Cancer is complicated…

I know that not everyone wants to think or talk about death. And that is perfectly fine. It has to be on your own terms. But if you dare, I urge you to do so. We shouldn’t be living our lives in constant fear of death, but (sorry, cliché) remember that our time is not eternal and stop worrying about insignificant things. I am grateful that I have so far had a great life and can only continue to hope that it will keep on for much longer. However if it doesn’t, it doesn’t.

I will be repeating myself,  I need to keep writing and saying all these thoughts over and over again in order to manage the situation. Then, what will happen if the doctors say that they cannot do anything more for me, I do not know. But I am trying to prepare myself.

I can really recommend this book that I started streaming yesterday: “Så länge vi lever” (“As long as we live”, Swedish only) written by a cancer doctor called Peter Strang and also to watch a story tonight on the nine o’clock news ( about a woman called Ida Boström who has been living with cancer for nine years and who will probably not make it for much longer.