If you’ve followed my story so far, you know that I have lymphoma (a type of blood cancer), and I’ve written about the situation up to the diagnosis (February 2020). Now, about six months later, I want to write about the treatment process for you and share experiences that might add to someone’s awareness (which I hope will help). In any case, the conclusion and judgment are up to you.
Please take the time to read because I’ve spent a lot of time on it, writing from the depths of my emotions, and I only wrote when I had more focus. I hope you enjoy reading it and find it worthwhile…
If you still don’t know what the situation is, you can read the two previous articles that I link below. (I’ll try to add the costs to the previous articles as well, which, as you know, unfortunately vary day by day and are quite heavy without insurance.)
Also, you can read this series of articles in the following order:
Remember at the end of the previous article, I mentioned that the doctor said chemotherapy should start, and the lymphoma I have is of the non-Hodgkin type, which is invasive and grows rapidly, or in other words, is aggressive. If we want to fight it, we must act as quickly as possible, and the method the doctor suggested was chemotherapy. And right there, a test was required named Bone marrow examination to see if the disease had infiltrated them or not?
First, I’ll start with the results of the Bone marrow biopsy which were negative, meaning not infiltrated, and the bone marrow, which is responsible for blood production in the body, is fine (if it were positive, a bone marrow transplant would be needed, which I’ve linked and you can read about).
But the chemotherapy experience; I was prescribed 6 sessions, each session every 3 weeks, and after that, a PET-CT scan of the body must be done again to determine the patient’s condition and whether further treatment is needed or not. You can read about this experience and the scan results by the end of this article.
The chemotherapy process is such that an appointment is made at the hospital/clinic, and the prescribed drugs (which apparently in Tehran are only available at Red Crescent, 13 Aban, and 29 Farvardin pharmacies) are prepared (the cost of the drugs is on average 3 to 4 million tomans, which with health insurance is 10% and 300 to 400 thousand tomans). For the injection, which is done through an IV, you go to the hospital or clinic.
For the injection itself, the clinic charges 410 thousand tomans per session (the government hospital is insured, but I don’t know what percentage, and I don’t know about supplementary insurance because I didn’t have it). The government hospitals had at least a 2-month waiting period, and due to the coronavirus outbreak, it was advised not to go to the hospital, which is better and has its own set of problems that you surely know about. Also, for the injection, people who have heavy drugs must attend two sessions on two consecutive days (and the cost will be for two sessions, which was the same for me; the doctor said it’s okay to do it in one longer session, and the cost was for one and a half sessions, which for the 6 sessions I experienced, was about an average of 2 and a half hours for the injection, done through 4 IVs, although not all IVs were full and it depends on the drug dosage prescribed by the doctor, and the interval between each course is 21 days).
I won’t tire you out and get too detailed, so let’s move on to the treatment experience. It’s better that way.
The First Cycle
The first session was scheduled for Saturday, February 15, 2020, at 10:30 AM. Upon arrival with my medications and after taking an anti-nausea capsule, and a quarter of an hour later in a hall with seven beds where others were also receiving their injections, the nurse came and asked if I had any allergies to medication or anything specific (which I don’t), then they found a vein and placed the injection needle. They then connected the first IV (which sometimes the first IV is just sodium chloride used for flushing). The nurse mentioned that the first time is usually harder and subsequent times are easier, and because the body’s reaction can be different, they administer the IVs slowly the first time so that if there’s a problem, it won’t be severe and can be managed. The IV that was usually hard for me and went slowly (and was often intermittent) I think contained Rituximab, which caused a bit of burning during the injection. Overall, the injection itself isn’t a very strange experience and is similar to the usual IV administration, which instead of half an hour, took about two and a half hours for me with five IVs. I had mentioned before that it was supposed to be over two consecutive days because of the amount of medication, but the doctor said it was okay and they injected all the medications in one day, which honestly made it easier for me and was a good thing!
After this time passed (during which some people doze off, some read or watch something, and in short, we can fill this time in a way that makes it less boring), I felt completely fine. You probably know that after an IV, you get a feeling of being lightheaded :D
I went home and lay down for about 2–3 hours, and when I woke up, I felt like my blood was boiling and a heavy, iron-like taste had saturated my body. It’s hard to describe this feeling, but if you’ve experienced night sweats and wake up smelling the foul odor of sweat, it’s somewhat similar, except instead of the smell of sweat, it’s the smell of a laboratory!
But still, my overall physical condition was good, just that I had become very loss of appetite and experienced one of the most intense feelings of lethargy I’ve ever had.
I’ll mention something here that I’ve pointed out before: It seems to be human nature that when we feel bad, we forget the good, and when we feel good, we forget the bad! Maybe if I had written about it at the time, it would have been more accurate, but expressing feelings and one’s state with a pen is difficult in any situation, and now that I’m writing about it, at least I feel good about it!
In the following days, I pretty much either slept the whole time or didn’t sleep at all!! The second day also passed with complete loss of appetite and lethargy…
By the way, I’ll mention something important here: In the first five days of each session, there’s a sheet of pills called Prednisolone, which for me, with a dose of 5, I had to take two a day… This pill causes the body to weaken a bit so that the medications can work more easily! Its side effects are nausea and fatigue, and there are worse long-term side effects that you can read about on Wikipedia, but it must be taken with a full stomach, otherwise, it causes severe nausea. The point of mentioning this is that I struggled much more during these first five days until the effects of the medications wore off and the pills were finished. In the first three days, capsules for anti-nausea are also prescribed.
That evening, I was so listless, tired, and unmotivated that I just wanted time to pass quickly, and then my mother said, “Get dressed, let’s go for a walk,” and we did, and I got tired after 5–10 minutes and we returned. The thing is, in the first few days, the body really falls apart, for example, I would suddenly feel cold as if there was no system to stop it! The cold quickly entered my body, and when I covered myself with clothes and a blanket, I felt warmth and suffocation! Or a feeling as if I’m bursting (to use the bathroom ?) and when I went to the bathroom, I didn’t have to! Anyway, the first 3–4 days passed slowly and repetitively, and eating had become difficult, so I drank more fruit juice, and you know that when you can’t eat, it creates more problems and bothers you, or you might get a fever, which can be dangerous (which happens in the fourth and fifth sessions, and you’ll read about it there) but on the fifth morning, when I had to take the pill I mentioned above, and since I couldn’t eat, after taking the pills after breakfast (which I had been taking since the first day of injection and this was the last day), and after about 6–7 minutes, I threw it all up, and honestly, I felt much better ? But I was worried that my body might have rejected the medications too, and that would be bad! Anyway, after consulting with the doctor, they said that maybe for next time, they’ll prescribe anti-nausea medication for the days after. In any case, the difficulty of the first chemotherapy session was mostly these first 5–6 days, after which I felt much better and was able to do some everyday tasks.
The only thing that really bothers is called Metal Mouth, or that iron-like taste in the mouth that really makes eating difficult… (which after 2–3 days from the injection is evident from the white color of the tongue) It makes even drinking water difficult, and water tastes like cleaning agents and bleach :| Even boiled water completely tastes like soap! Or for example, I, who was a big tea drinker, now can’t drink tea at all because both its heat bothers me and the taste is completely different! Or eating starchy things like rice and bread! I didn’t eat rice for exactly the first 2–3 sessions of chemotherapy (60 days or two months) because it creates a burning sensation in the mouth as if you’re chewing on a blade! But eating meats like fish and chicken is easy and doesn’t cause problems. Drinking fruit juice is good, or eating cooked vegetables or cooked fruit, and on the other hand, eating seeds like beans, cucumbers, cabbage, or plants that cause gas ? or raw eating like raw vegetables and fruits might be a bit bothersome. Also, in the first week after the injection, you shouldn’t eat full-fat dairy products. Overall, after the effects of the medications lessen, appetite returns, and you just have to get used to the fact that now you can’t eat some foods, and the rest might not taste the way you thought they would! Also, eating eggs is good, and their taste hasn’t changed much, which is great if you don’t have a problem with eating eggs!! And it’s better not to eat your favorite foods because their different taste will make you pessimistic and reduce your appetite (even later, after the treatment, you might not feel the same about them), which as a result, eating less can lead to weakening of the body and, of course, weight loss…
Overall, nutrition is very important during treatment, but it’s hard, and apart from the appetite and desire to eat, forcing yourself to eat (and then it becomes harder to eliminate because chemotherapy seriously affects the intestines) makes you think about going to the bathroom afterward!! (which really creates a serious problem, I’ll tell you why next session ?)
Also, by the end of this session, the 9 by 6 cm tumor that I had mentioned in previous writings had gradually started to spread out and had softened and, of course, had become much smaller…
I think that’s enough for now, let’s go to the next session and write some things there :)
The Second Cycle
Well, after 21 days, which is Saturday, March 7, 2020, and with 2 extra days that we had requested from the doctor (because the doctor was present on Mondays and it was possible to prescribe medicine for the next time and also see the doctor if needed), therefore, an appointment was given for Monday, March 9, 2020, at 15:00. After attending with the medicines and taking the anti-nausea pill again (I won’t write about the following sessions to avoid repetition, but they all followed the same order), about 10–15 minutes passed, the vein was accessed, the injection needle was placed, the IV was started, and the injection of the medicines, which were in 4 IV bags, had to be done in order. Something I think I forgot to mention last session is that the medicines should be refrigerated until this time, and even the coolness of the medicine during injection might be a bit bothersome, causing one to rub their hand and later feel a bit of pain. The mild hand pain might also be due to the needle being in place for 2 and a half hours… (And well, some patients have a port on their chest instead of the hand vein for injections, which I don’t know how it is) and that this session was the fastest in terms of injection speed for me and took about 45 minutes, much faster than before, all the IVs were injected. Interestingly, there is a red-colored medicine that is a small amount of the IV and is injected quickly, and they gave me ice to put in my mouth so it doesn’t get sore, and a bit of the red color of the urine and the laboratory smell is also noticeable, which isn’t very pleasant.
Again, after going home and feeling a bit heavy and dizzy after the injection, I felt sick and fell into a pattern of nightly wakefulness! But at the same time, I was unable to do the usual daily tasks…
The side effect that was more bothersome than what I mentioned was shortness of breath, which prevented me from sleeping as if something was pressing on my throat (like when I had a tumor in my chest, which especially bothered me at night and now only a very slight effect of it remained), so on the doctor’s advice, we got Ventolin spray and oxygen spray to use if I experienced shortness of breath, and that I should place several pillows and raise the head of my bed higher to make it more comfortable, which was a bit hard and made it worse for me to fall asleep, but I got used to it a bit and later slept like before because sleeping like that was very hard for me.
A point I want to write before the spiritual experiences and such is about nutrition, which I had mentioned before, now I’ll just mention that drinking fluids after each session is highly recommended, and in short, consume as much fluids as you can, and if it’s natural, it’s much better (in short, drinking a lot of fluids is recommended even if it causes diarrhea ?). But let me say that since eating food is harder and fluids are easier, you probably unconsciously prefer them! Also, eating honey and other complete foods is recommended, although it might not be so easy considering the taste, appetite, etc., but by any trick you can, you must provide the body with the necessary items, otherwise, the difficulty multiplies…
I don’t want to talk about the side effects again and be repetitive, so I’ll speak from experience: now that my body has become a bit weaker, enduring it is a bit harder, and the feeling of sickness and depression and lethargy has intensified. On the third or fourth day when I was feeling very sick, I went out with my mother and sister (due to the coronavirus outbreak, to a quiet place and with masks…) the air had gotten a bit better, and we went next to a garden where the trees had blossomed… (it’s a pity I don’t have a picture to show you) I don’t want to preach, but at the height of feeling sick, I got a bit of energy and saw life a bit better, it was here that I realized that as much as I was ready to fight this disease before, now I have a deeper understanding that this event is not a choice and now that life has forced me (because until a few months ago I had a completely different plan for now and now the first priority has become fighting for health!) there is no choice because throwing oneself into the sea and accepting the reality of events and using the experience it gives me… is something that, unlike many other things, cannot be denied with its impact on body and soul. You can’t say forget it, let’s play a game, watch a movie, listen to music, and easily escape the hardships of life for even a short time, and instead, it occupies all your thoughts, if you can and have the patience, this time is the best time for reading books…
But at the same time, next to this pleasant garden, I felt very sick; the spring breeze that came still felt cold to me (even though the weather was very good) and even though I was wearing warm clothes, this wind entered my skin and bones without caring about my body’s protection and made me shiver, but at the same time, I didn’t want to go back and wait for time to pass in the heavy atmosphere of the house…(during these periods, which usually the first week to 10 days after the injection, time really passes hard and because the body usually doesn’t have the ability to do anything and is not in a good mental state, the passage of time itself is a story…) Right at that moment, I remembered a few memories… One was the first ascent to Tochal peak with my very good friend Javad… One of the best feelings I had experienced and I regretted why now the same good air doesn’t have the same good feeling… Exactly when I was lying on the slopes of the mountain towards the city and the warm sun (and of course the cold winter wind!) on the ground and despite the tiredness, I was enjoying the good feeling… or when we went to the countryside and went to what is called the desert and I had gone up a hill alone in the tranquility that had silence and only the sound of the wind was heard and polished the soul and refreshed the body… Now the same wind and silence were tormenting me! Really, sometimes nothing matters except feeling good (satisfaction) and how material things can become worthless; (for example, when we feel suffocated, the only thing we think about is the need for oxygen… in these situations, the only thought is health and feeling good and nothing else)
Let me say something to change our mood: I definitely have to write about mountain climbing (or going to nature, which might be the forest for one person, the desert or the sea for another, I don’t know, for me the easier thing was to go to the mountain) and its feeling and experience… Honestly, writing about it is hard for me, but it’s really extraordinary, and if you haven’t gone yet, go several times in different seasons, I’m sure you’ll fall in love with it. (And let’s mention Javad, Ali, Ardalan, and Ali2 or Taghi, and Kiarash who doesn’t have the patience for mountains ? but maybe we went somewhere else! They are my very good friends from university and later when we went mountain climbing together, it really forms one of the best memories of my life…)
Finally, in this situation, I managed to eat a little of the Olivier salad we had brought and a tea (which I probably will never forget its strange taste and feeling!) We went home and apart from all the physical and emotional feelings, I was happy that it’s so good to have someone by your side who cares about you.
We went home and after lying down for a bit, I developed severe nausea and after a few minutes, I threw up almost everything I had eaten ?
But just like the last time, afterwards, I felt much better and my condition improved, I just couldn’t eat anything and the empty stomach and the condition of my intestines and stomach pains were bothering me… But as I said before, there’s no choice, so I got used to it.
Remember I mentioned the toilet problem, during this period I experienced one of the hardest disorders for the intestines and if you believe it, one day I set a record by going to the toilet more than 25 times! The same story I mentioned about feeling like bursting but apparently, there was nothing and it was a bloating feeling that is really bothersome and almost disrupts everything else (and with each trip to the toilet, a small amount of the intended substances were expelled ?) and drinking mint distillate and rock candy tea and such had no particular effect and it has a strange pain that in English they call Stabbing or a feeling of being stabbed! It means the same feeling of stomach cramps and pain but with a burning-like pain!
Now, after those 5 days and finishing the pills (which this time the extra anti-nausea pill apparently had no effect considering the above and vitamin B12 syrup was also added which was so bad-tasting that I didn’t finish it completely) I can sleep more comfortably and get along with it a bit, here I learned a trick that whenever I felt very bad and listless since sleeping feels very bad and I want to be able to get up and do something (even be able to play a hand online with the guys) but it seems my body wasn’t ready yet and sitting behind the computer is very hard for it! What was the trick I mentioned? It’s that at such times I would go to the bathroom and open the shower and even though standing under the shower felt like something was pressing on my shoulders, sitting on the bathroom floor made me feel good! Really, what does water have? ? Whatever it is, whether it’s the molecular structure or whatever, it’s the essence of life! Anyway, it made me feel good for 5–10 minutes (I had learned! and I did it almost every day at noon ? and some days even twice) Of course, if it was longer than this short time, it would cause my body to get confused (although even this made me feel intense heat and cold, but it was worth the good feeling!) You might think I’m rambling or maybe you understand! I don’t know…
Gradually my body was regaining its strength and apart from the problem of the taste of foods and expelling them, which I was gradually getting used to, there wasn’t any other serious problem… As we were approaching the third cycle, my hair started to fall out and after a few days when I went to the bathroom, a large number suddenly came out that I plucked the rest myself! ? I mean, it was very loosely attached to my head except for the hair around and at the back of the head which was still largely in place, so at that time we completely shaved my head and the result was the picture below…
![Eight days after the second session of Chemotherapy][/uploads/images/posts/chemo-1.webp]` Eight days after the second session of Chemotherapy
Of course, I really say that appearance is not very important to me, and I definitely say that my mother was more worried about my hair falling out and whether it would grow back? Or I wish your eyebrows wouldn’t fall out later and such, and for me, it was more important that my heart and intestines, considering what I wrote, wouldn’t have a problem or somewhere else, for example, heart/stomach pain that I had written about in previous writings, I wouldn’t experience again…
I don’t know, maybe because I was mostly behind the computer (and even studying computer software engineering), I’m kind of a homebody, minus the childhood time and game net, I didn’t go out with anyone except family and very close friends. Or the fact that I’ve never been in a relationship was such that even when I had hair, I didn’t show it off much ? or I didn’t take care of myself much (to say, for example, when it seems like he wants to go on a date, which itself is debatable, I haven’t experienced it yet?) and for example, when I wanted to go to university (or as we say, “nerkadeh”! because our faculty is vocational and boys and girls are separate!) until the last minute when I had time, I would sleep and practically didn’t have time to get ready! (Of course, I don’t take pride in it, and I think it’s bad, the fact that you wake up earlier, tidy up your bed, make breakfast for yourself, take a regular shower, and take care of your appearance is a very, very good thing and makes you organize the rest of your tasks better and perform them better, which I try to be more like every day) Anyway, now that because of the coronavirus outbreak we have to be quarantined and the university is closed and online, so my appearance didn’t have any special impact…
Another thing that was in this period was Chaharshanbe Suri night when we went to our own alley and lit a fire and sat and talked and ate something, and for me, it was a leave from all these stories and extinguishing them for one night and giving the yellows to the fire and taking the reds from it and jumping over it ?
Right here I say, if such a problem has occurred for you or someone, definitely be by their side and for various reasons, if you can, go to a park somewhere (even behind your home room!) Although it may be very difficult for the patient, it is better than leaving them alone with their thoughts at home (not that they necessarily have to be alone, that they don’t feel lonely… ) Now that I’ve said this, another very important and related topic I’ll say
Chaharshanbe Suri night (Eight days after second session of Chemothrapy)
but let’s go for the third session…
The Third Cycle
Again, after 21 days, which is Monday, March 30, 2020 (when we were in quarantine all of Nowruz and neither we went anywhere nor anyone came), the appointment was for 11:30 AM when we went for the injection and as usual, taking the anti-nausea pill and starting the injection… (Overall, in these six courses, we went twice in the morning and four times in the afternoon, since I didn’t mention anyone by name, I say that the medical staff of the afternoon shift of the clinic we attended was much better and that the subsequent sessions were generally much better for me in the afternoon!)
I think the hardest injection session was this one because apart from the injection itself, the room was extremely hot and after one of the IVs, which was a bit burning, caused my hand to swell a bit and probably wasn’t completely in the vein… Anyway, after stopping the IV and injecting Dexamethasone, which is for pain relief and inflammation/immune system suppression and suddenly a severe burning sensation, the continuation of the injection was done from my other hand (left) and there was no problem until the end of the injection, after which they gave me ice to put on the inflammation and we waited a bit to see the doctor.
We saw the doctor and they said that apparently everything is fine and… (However, considering reading others’ experiences on the internet and sites like reddit.com, healthcare.com, cancer.com, etc., which is not bad and you should spend time reading them too, it was strange to me why they didn’t take a blood test because as I had read, tests were taken between sessions, I don’t know, maybe in other clinics or other countries the process was like that or it wasn’t done right here!) Anyway, I also asked the doctor if there is no need for a test? And they said that the dosage of the drugs is prescribed based on previous tests and my current height and weight; although I am completely satisfied with my doctor and since I didn’t get their permission, I won’t mention their name, but overall the medical staff behaved very well and wherever they are, I hope they are successful and well. My more serious question was that considering the experiences of the last two periods (42 days), is it possible that chemotherapy could damage vital organs? Or will the same digestive and intestinal problems remain after chemotherapy? (Because I am someone who thinks the quality of life is more important than its length… Maybe more explanation is needed, but you know what I mean, in short, the breadth of life is more important than its length) And they said that there is no problem…
Let me say something important here: I think in addition to the fact that general information about chemotherapy among the people of Iran (at least those I have encountered) is low and we don’t have much interest in it (I mean that when someone even among acquaintances suffers from it) we don’t go to read or research about it; and we simply suffice with what we have heard or what the doctor says (some also say that the less a person knows about their pain, the better and at least they don’t have the stress) I completely disagree and I think the more awareness, the better. My point in saying these things is that when I was reading different people’s experiences, I saw that when they understood the specific therapeutic side effects of their disease and consequently their specific drugs, dosage, and type of treatment were very severe and could cause serious problems for them, they preferred not to start the treatment at all and use the remaining time of their life with quality, which is completely okay and respectable… (Surely you know or read that Steve Jobs was also against his treatment…) Anyway, I think you should definitely read and gain awareness that the drugs you inject, take, etc., or such and such treatment might have what side effects and don’t easily accept everything and accept it with full awareness… In fact, when you fill out the consent form, it shouldn’t just be for the sake of getting started, and you should really know what you are consenting to so that later if there is a problem, it is with your consent because you can’t regret it in these cases. I think that’s enough, let’s not take the discussion too far and continue.
When we went home and I had that cheerful feeling after the IV (because I had received a large volume of sodium chloride ?) I went home and played some games with my friends which was very fun and the day passed with eating food and other daily activities.
Surprisingly, the first three days of this course were completely normal for me and it was as if the drugs had no effect! Even on the third day, I told my sister that I wish all the courses were like this and it’s very easy this way! That word was the same and the sickness of the fourth day was the same… Now I don’t know why, but in these next few courses, the serious side effects of the drugs were delayed from the third to the fifth or sixth day… Although the really hardest courses were the first and second ones and now I had gotten used to it a bit (really human beings get used to anything!) and also eating foods and the upset stomach and intestines (which now had less severity) had become more tolerable…
But naturally, my body had become weaker than the previous courses and this could be understood from getting tired quickly and the daily lethargy (generally when a person is sluggish and lethargic, time passes slowly…) Anyway, I won’t repeat the side effects again, I just say that about 4–5 days passed in the same previous manner until I felt a bit better again and returned to the normal routine.
Let me say something I said at the end of the previous course related to being together and not feeling lonely… I’ll say that:
As I said, if you or someone is involved in this problem, definitely be with them and don’t let them be alone with their thoughts, even though they might be in a group and are drowning in their thoughts and it’s driving them crazy… (The mental and morale issue)
Definitely, without making them feel that you are pitying them or just talking, or advising, share your heart with each other from the bottom of your heart and try to listen and hear… Or it’s very common for relatives to tell cancer patients that so-and-so also had chemotherapy and got better, or that such a percentage of them get better and morale is important, or for example, even if hair falls out and… just take care of yourself and don’t be upset about these stories… (Surely you know what I mean and if you don’t know, don’t pretend! And try to believe in what you say) The conditions of people differ from each other but in my case and I’m sure many others, I think don’t do this at all, why? Because someone who is undergoing chemotherapy is very likely to know these things themselves and unnecessary and repeated emphasis on these from a person who is completely healthy only makes the patient feel worse… If you really believe that morale is so important and you believe that the patient can overcome it, then what are you afraid of? Surely you are not in that person’s place and the person themselves knows better than anyone that they have to keep their spirits up and they try for it… Instead, try to talk about things that are attractive to the patient and give importance, listen to each other’s words and without judging, understand each other… There is no need to keep emphasizing good morale, instead, let’s spend time for each other, share our feelings, go out and create good moments… Instead of telling each other that they are important to us, let’s prove it in action and don’t talk about the things we do for them and are willing to do (so they don’t think it’s a burden on them), understand the situation and create good morale in them, if you really accept that this situation could happen to anyone and many things are not important, don’t take away the sense of belonging from people with strange looks… Don’t pretend that the situation is normal, believe that the situation is normal… If we do these things, I promise it has a much better effect on the person, especially if you weren’t very close to the patient, observe these.
Also, during this period, although the drugs weaken the physical condition, the mental condition is also very unstable, speech and behavior have a much more serious impact so be more careful and don’t say or behave in a way that causes regret, don’t do something that causes the patient severe anxiety and stress and it might be an event that we remember forever and of course, I think people don’t forget each other’s actions, instead, they forgive… So if we do something, it’s better to apologize and instead of saying ignore or forget my behavior/words, say I know my behavior was bad and try to be able to forgive :) These issues are not very related to the disease but are intensified in the case of the disease. Also, if the sick person also has unusual behavior, rest assured that later when they are upset about it, they apologize so don’t be hasty.
This stage causes more sensitivity so even secretly don’t say anything that you are not willing to say in front of the patient to anyone! And always don’t bring up every thought.
The Fourth Cycle
The injection time was scheduled for April 20, 2020, at 14:00. After completing the procedures I had mentioned and the injection itself, which went smoothly as usual, the session ended about two hours later. During this time, my father was waiting for the doctor to prescribe the medications for the next session. Sometimes this wait could be a bit long, but usually, by the time my injection was finished, my father would have seen the doctor; then we went home. As usual during this period (I mean a few days before and after the injection when the effects of the drugs have worn off or haven’t yet had a significant impact and their side effects aren’t much felt), when I ate, it now felt the opposite and was very enjoyable!! It seems like when you haven’t experienced something for a long time, experiencing it again brings more pleasure! Now I enjoyed eating much more and ate more food before the drug side effects returned and made me feel sick…
As I said, I don’t know why, but the drug side effects were delayed in the subsequent cycles. The first five days of this cycle were very easy for me (until the day the prednisolone pills ended). Anyway, overall, I had gotten a bit used to it, and it wasn’t as hard as the beginning. This photo is from this cycle; we had gone to a park near our place. It has a large space and wasn’t very crowded at that time, and of course, we sat in a secluded spot with masks on. It really changed my mood and gave me good energy (even though my body felt better, but you see, I wore a sweatshirt in April! So the cold and heat and the weakness of the body still bother me).
Park (two days after the fourth chemotherapy cycle)
Well, the next few days were pretty much the same and nothing special, but on the sixth day (actually five days after the injection, counting the day of the injection itself), I had a severe headache from around 11 in the morning until about 6–7 in the evening, which was driving me crazy. It was really intense and bothersome, and given the general state of my body, time was passing very hard for me to the extent that I kept looking at the clock frequently! It was really strange for me; my experiences were different from the previous cycles, and I was bothered in a different way. In this cycle, the problems of the previous cycles and my stomach pains were less intense, but I felt a severe burning sensation during bowel movements, which was very bothersome. Now I was experiencing the side effects in a different way.
In the afternoon, when my brother and father came home from work and noticed my severe headache, they suggested I might have a fever, and when we checked, I indeed had a high fever (although I had tried the trick of taking a shower once, and it didn’t have any special result), and I hadn’t taken any painkillers for fear of drug interactions; the nerve pain was driving me crazy to the point that I almost bit someone ?
They said let’s do a foot bath, and since I was feeling bad and had collapsed (and right here, I really want to thank my family for being there for me and making this experience easier), my brother and father brought a basin in which I put my feet, and pouring ice water into that basin was like pouring water on fire. At first, my body shook violently, and I felt an intense cold, but gradually, as I got used to the water temperature, I felt a bit better. During this time, as my brother placed a wet towel on my forehead and neck to bring down my body temperature, I closed my eyes for a few seconds and took a few deep breaths, and I was completely satisfied that the insane headache had lessened, and now I had a mild pain. Continuing this process for about half an hour, I felt much better. Later, we asked the doctor, and they said that taking painkillers without codeine is fine, and since the pain was coming back a bit, I took a painkiller, and then I didn’t care anymore, and my condition returned.
After sleeping and the day passed, in the following days, I felt a pain on the left side and back of my head (at the parting of the hair), and it was such that pressing my hand on it made the pain more intense, but in a normal state, it wasn’t bothersome, and after two or three days, the area gradually swelled, and it was about 3–4 cm (width) and about 2 cm swollen, which worried me a lot! (Although jokingly, I said that they pressed the tumor from somewhere else, and it popped out here ?) But now, even when I put my head on the pillow to sleep, it bothered me and hurt.
In short, after asking and sending its picture to my doctor and my own worries that maybe the treatment didn’t work?! And a lot of other thoughts, the doctor said that it’s probably an infection (abscess) and we should go for an ultrasound, which after doing it, they said it’s nothing special and can be solved by taking antibiotics that prevent infection. So, after buying two pills, one to be taken every eight hours and the other every six hours, and taking them for five days, the problem was resolved, and the pain went away.
One day, I went out again with my sisters and mother, and again, I say thank you very much to them because these experiences make the path of enduring chemotherapy much easier (I say that at first, the suggestion of going out might be difficult for the patient and they might not have the motivation, but I definitely say that afterwards, there is no regret and they feel completely satisfied). We went towards the village of Vardij, which has good weather this season and a lot of space to maintain distance (and naturally with masks and observing health measures). In short, we went, and the picture below is related to this cycle.
Vardij Dam — (10 days after the fourth chemotherapy session)
Afterwards, on the way back, we went to sit by the river, which was really pleasant, but the wind and humidity around the river were cold, causing me to shiver a bit and feel unwell, especially when the body is weak and energy is rapidly depleted, and you quickly become tired; therefore, I said I would go wait in the car, and you can sit. My mother came with me, and we waited a bit for my sisters to come, and then we returned home.
Now I want to talk about my next experience in this period, which is truly one of the most unforgettable moments of my life:
Four days later, it was my birthday, and for us, it usually means getting a cake/pastry and having a family dinner and a small gathering. Of course, once in the fifth grade, I had a birthday party and invited my friends, and since then, it has been as I described. This time, naturally, I had the same expectation, and actually, it’s good this way, that we don’t expect anything from each other or look for excuses to love each other and express it through our actions every day. After all, these occasions are also an excuse to be together.
I had the same expectation, and well, since my younger sister is quite enthusiastic, she decorated the house a bit, and with jokes and such… it was a good time. When we ate the sweets and such, something happened that I didn’t expect; my sister went and brought the cake they had gotten, but what was unexpected? I’ll tell you in a moment…
First, again, I thank my sisters, my brother, my father, and my mother for, apart from working hard for each of these moments and the things I’ve told you before, being there for me. There might have been times of joy, perhaps sorrow, maybe even an argument or two, but these are common for everyone. What’s important is that we don’t disappoint each other and appreciate one another.
Always, when in these movies, something happens that makes the character emotional, I wondered if I were in their place, would I feel the same? Could we forget our emotions? But there’s nothing wrong with being emotional just as you laugh and rejoice, to also be moved to tears…
Birthday Cake — (4th May, the fourth chemotherapy cycle)
When I first saw the photo on the cake, which I will explain later, I was involuntarily speechless and choked up… I was quite shocked, trying hard to control my emotions, but a few tears fell. After I felt a bit better, I changed my clothes to light the candles and…
But why? The photo on the cake, which is also on my Telegram profile, probably taken by my family from there, relates to the peak of our mountain climbing days. My friends are behind the camera in this photo (the location of the image is near Kolakchal peak). When I saw it on the cake for the first time, images and memories of 2–3 years of mountain climbing flashed before my eyes: the satisfaction after ascending in the winter snow and strong winds, the heat and sweat of summer, the pleasant air of spring in the mountains, the smell of the stove and tea inside the shelter, the drizzle and the good smell of Kolakchal, the difficulties of Darabad and Tochal slopes, our feet freezing and getting thoroughly wet, yet at the same time the craziness, slipping, and playing in the snow beside the shelter, the fatigue and sleep after the mountain, the hot tea after hours of cold, the taste of bread and cheese on the peak, lounging on the rocks, the feeling of insecurity and adventure at night, the calming silence, the gatherings in Darakeh, and in short, all of them were truly extraordinary. I’ve mentioned my friends before, and they have been the best friends of my life so far. The feelings we shared in these memories are priceless to me, and I wouldn’t exchange them for anything. I think one of the most valuable things that university gave me was these experiences and friendships, an unconditional friendship full of good energy, kudos to all of you…
And how much I would love to experience that feeling again, I was choked up thinking, can I experience those days again? Will I have the same energy again later? I hope so; despite my illness, COVID, and no one knows what tomorrow will bring.
Let’s move on to the fifth cycle, apparently, the events of the fourth cycle were very emotional!
The Fifth Cycle
The injection time was scheduled for Monday, May 12, 2020, at 14:00, and as usual, the injection was carried out, which again took 2 and a half hours, and the overall process seemed a bit long to me. During the injection, the doctor came, examined me, asked some questions, and said that things were good.
This cycle, too, the first few days of drug side effects were nothing special until the sixth day after the injection when I got a severe headache again, although not as intense as the last time, but more bearable. I tried to sleep a bit, but couldn’t, and by the afternoon, the intensity increased, and I got a fever. This time, considering the previous experience, we did the same foot bath again, which really had a good effect, and there was no need for painkillers, and I felt better.
A few days later, I was a bit lethargic and unwell, but then I felt a bit better again. This cycle, the side effects were just a bit of stomach pain that was bothersome and severe burning during defecation, but compared to previous cycles, it was easier to tolerate, and especially eating had become easier; now I could eat rice and bread without any problems. Of course, something I forgot to mention was that in these last few cycles, I found it easier to eat Sangak bread. In short, if you have such a problem, try different things, even foods you don’t like might now have a different taste and experience and change your perspective. For example, things like broccoli and celery (which should be cooked, as eating them raw might upset the stomach).
Another thing I experienced a lot during these cycles was heart palpitations, which had become normal for me. Sometimes, especially when I hadn’t gone out much or at night when sleeping, I would get heart palpitations. In these situations, just taking deep breaths might make you feel a bit better, along with drinking water.
One day, when I was almost feeling better, we went to the park near our place, sat in a gazebo, talked a bit, went for a walk, and in short, it changed my mood. :)
Park (Day 8 of the third chemotherapy cycle)
Now that I’ve generally become more tolerant of it, and aside from the cases I mentioned above, nothing was as bothersomely intense, and eating had become easier, I tried to eat more to have more energy and get more accustomed to this situation. I spent less time at the computer during this period and tried to learn some cooking myself. I learned to make a few dishes, like chicken stew, Ghormeh Sabzi, and pasta with tomato sauce :) I washed my dishes and clothes. In short, I kept myself busy with tasks that require a bit of patience but aren’t too hard, to gain new experiences and make time pass more comfortably. To be honest, I was pleased with the results and might do more of these activities someday and try to enjoy this lifestyle, although it requires patience, which I usually lack, but I try to devote more time to various tasks.
During this time (I mean this period of taking a break from being online, gaming, and the virtual world), I downloaded a few books on various topics and read a bit from each. I really would love to spend more time on it if laziness allows. As I said, I was trying out different things more to see what I’m genuinely interested in. Maybe my current interests are just out of habit? In other words, I was experiencing life more and putting more time into new experiences. It was a strange but good period… And the conclusion I reached? That I definitely, definitely need to devote much more time to reading than I currently do.
One day, we went to Vardij again with the family, and now that the weather has gotten much warmer, we went up and walked a bit along the mountains with their famous designs and did some hiking. Going out is much easier for me now, and contrary to my current physique and appearance, I have more energy than in previous cycles and can better tolerate heat and cold. We sat there for a while and simply passed the time. The picture below is related to that, and of course, my weight loss is quite noticeable. Although I have always been genetically and generally a thin person, my weight was 54 kilograms before starting treatment, which had dropped to 49 kilograms after this period and 7 sessions.
Vardij (Day 15 of the fifth chemotherapy cycle)
Afterward, we went down from the place you see in the picture and sat by the river, enjoying the weather there, although it’s quite warm now, if the flies allow! After the river, which had relatively cold water, we washed our hands and faces, made an omelet, and then headed home…
The Sixth Cycle
The injection time was scheduled for Monday, 12 Khordad 99, at 15:00. As usual, we attended with the medications, and after about 2 hours and 15 minutes, the injection was finished. We waited a bit in the waiting room for the doctor. When the doctor came and said that well, 6 sessions were completed, and it’s evident from my condition that I’ve gotten much better, now I have to do a PET-CT scan in 4 more weeks to determine the results of the treatment. You can read about the scan in its relevant section.
This cycle also wasn’t too bothersome in terms of side effects, and I say that I had almost gotten used to it. I could eat more foods, and unlike the previous two times, I didn’t have a fever or headache this time. The only physical problem was the same stomach pains and burning during bowel movements, which had become easier to tolerate than before. Honestly, the hardest part of this cycle was not knowing what was going to happen, which made time pass slowly, although I could do more activities and keep myself entertained. Also, I had to schedule the PET-CT for four more weeks, which was done online. Let me tell you the details of that in its own section.
Well, from the beginning, the doctor had said that 6 to 8 chemotherapy sessions should be done, and apparently, these 6 sessions were sufficient. After viewing the Pet-Ct images, a decision will be made on how the treatment should continue. Also, my doctor had said that my case didn’t need surgery and could be resolved with chemotherapy and radiotherapy. That’s why I say this cycle was a bit slow because I wanted to get it done as quickly as possible and figure out what I needed to do, and I really didn’t have the patience for chemotherapy anymore and hoped there wouldn’t be a need to continue it.
Since I don’t remember anything particularly special from this cycle that was different from before and that I haven’t already mentioned, I’ll talk a bit about the overall experiences of all the cycles.
The situation that happened to me coincided with the outbreak of COVID-19, which was beneficial for me as classes went online. Given the conditions you’ve read about from the beginning until now, you know that attending university could have been difficult for me because I had to travel a route that took about 3 and a half to 4 hours in total. I am a student at the Technical and Vocational University, Shahid Shamsipour branch, and our home is towards Shahriar, so traveling by bus and metro was a bit difficult for me, and I didn’t want to put pressure on my family because of this and be a burden on them. However, I was in my last term, and there weren’t many courses left, so it wasn’t very difficult for me to participate in classes and do my assignments during this period. Also, I had the master’s entrance exam this year, which I didn’t study for at all, both out of my own laziness and because the circumstances made me less motivated. Of course, I really want to study for my master’s because I am very interested in teaching, and a master’s degree would be a great help in achieving this goal. Anyway, I could still take a gap year for the master’s entrance exam, which was not insignificant, and it has been a year now, and because of the malignant disease I have, I will be exempted from military service, so I can focus on my master’s degree. After all, these are for the future, and no one knows what will happen!
Another thing is: if you are going to undergo chemotherapy, you can definitely prepare yourself for it to be very difficult and not easy, so try not to think too much about the outcome because even if the result is not 100% successful, you will later be proud of yourself for fighting such a thing and not giving up. You will be proud to have been part of this community, and I’m sure afterwards, you will appreciate your moments and loved ones more. During the treatment, try not to think too much about what will happen afterwards (I know it’s very difficult, and I myself couldn’t stop thinking about it) and continue the fight and believe in yourself. Despair is okay, and certainly, when a person feels very bad, lethargic, and bored, it’s easy to become hopeless. Sadness is okay, and even if it helps you feel better, cry. But set goals for yourself and empathize with our community :)
And naturally, no one would wish such a thing even on their enemy, so if there is anything you can do for yourself or others, definitely do it, whether it’s financial, informational, educational, emotional, or anything else you can offer, don’t hold back. Love others and understand them, and you won’t regret it. What could be more satisfying than helping others return to their normal lives?
If you don’t have such a problem, don’t think it’s impossible for such things to happen to you. Appreciate the moments, your surroundings, and your health, and don’t do anything that could endanger it. Definitely sit down and think about your actions for hours because regretting it later is useless.
If, God forbid, such an event happens to us, we shouldn’t consider ourselves unlucky (of course, we shouldn’t feel satisfied knowing that there are always people who are worse off than us and not be contemptuous! Instead, we should strive to improve ourselves and inspire others). Life has challenged us to fight, so let’s fight, roll up our sleeves, and even if all the odds are against us and even if we are going to lose, let’s not let the taste of victory be sweet for our opponent and not ring the bell of surrender because only then will we be proud of ourselves and reach deep self-awareness. And let’s not forget that the reason life is hard is not because of misery, bad luck, or a bad fate, but to carve the gold of our existence into something valuable and not just be a waste-producing machine!!
PET-CT
Well, friends, this section is related to the tests and imaging of the work that has been done. First, if you don’t know what a PET-CT is, you can read about it from these links. But in short, it’s a type of imaging like a CT-Scan that is very accurate and is used in cancer diagnosis, decision-making regarding surgery and radiotherapy, or identifying the stages of cancer, and is done with radioactive drugs that have a short lifespan. In this way, a specific amount of radiopharmaceutical is injected into the veins according to the body, and after about an hour (which you will read more details about later), it causes these radioactive materials to accumulate where the cancerous tumor is and release gamma rays, which the device converts these waves into visible waves to produce images. Also, this method is up-to-date and has high accuracy, so there are few centers in Iran that perform it, and it is costly.
Well, during the sixth cycle of chemotherapy, we scheduled a PET-CT, and as the doctor had said, for four weeks later, which would be Tuesday, 9 Tir 99, at 9 am. Besides, the insurance doesn’t cover the cost, and it’s done entirely privately (I don’t know about supplementary insurance), and the cost at the time I did it was 4,500,000 Tomans, which is a significant expense, but it’s much better to do it, and it provides a much more accurate result than a CT scan. Also, 1,000,000 is received in advance for ordering the drug (because the Radiopharmaceutical is related to the Atomic Energy Organization and is brought to the clinic in special boxes), and if we don’t attend at the scheduled time, this cost is lost because, as I mentioned earlier, the lifespan of the drugs is short (which is a good thing, and after it’s done, it quickly leaves the body).
There are some points I need to mention, such as the need to be fasting on the day of the appointment, and a specific diet must be followed 24 hours prior. For example, I should not consume anything containing sugar, even fruit juice, caffeine, and some other things that you can find by searching. This is because, on the day of the appointment, the blood sugar must be below 140, and if you have diabetes, taking medication is not a problem, but it should be done with a doctor’s consultation.
It wasn’t even 9 o’clock when we got there, and after checking in at reception and presenting documents and pathology and filling out the consent form, we were told to wait to be called. Also, for women, if you are pregnant, you must definitely inform them, and if you have severe anxiety that prevents you from staying still for a while or if you are afraid of enclosed spaces, let them know so that a sedative can be prescribed with the doctor’s consultation… (Honestly, I get very stressed in these situations and feel a bit anxious about being in enclosed spaces, but since it wasn’t too severe, I hadn’t informed them. For example, before chemotherapy when we went for a CT scan, I was very stressed, and of course, having a tumor in my chest and difficulty breathing, especially when lying down at night, didn’t help, as you have to lie completely flat for a CT scan.) We waited in the waiting room for about an hour for my turn, and after my name was called and I received the clothes (the same hospital gowns that patients wear), I was led inside the clinic (which has a door that only doctors can open with a card, and it also has warnings about radioactive materials).
In this section, they took my height and weight and checked my blood sugar (which is determined with a small punch from the fingertip and from the blood) and when there was no problem, I was led into a single room in the clinic where the doctor controls the door, and when it’s closed, there’s no way out from the inside. After going into this room and changing clothes and waiting for about 15 minutes, the doctor came and took my vein and placed the needle for the injection, and I waited a bit longer and was told to drink one of the two bottles of mineral water in the room during this time. Then the doctor came back with the syringe related to the radiopharmaceutical (which has a thick syringe and its contents are not visible) and injected the drug, which was nothing special, and I just felt a bit of coolness that disappeared after a minute or two and felt normal.
Now I had to drink the other bottle of water and wait (in this room there is a bed for lying down, a bathroom, and a television, which I did not use, and I spent the whole time thinking!) for a period that takes about 40 minutes to an hour. After this time, the doctor comes and says to go to the bathroom (the amount of water received by the body is for this purpose) and the substances are expelled from your body. What was the goal? Well, if cancer cells still exist, this drug is not completely expelled from the body and accumulates in the location of the cancer cells so that it is visible in the images. However, there is no need to worry because this drug has a short life, and even the remaining amount in the body is later expelled and does not remain. The reason for the blood sugar and the diet the day before is to prevent any impact on the test results and avoid any errors in the test results.
Anyway, after using the bathroom, I was led to another room where the CT machine was, and after lying down on the bed and placing my hands above my head, which must remain in this position and motionless, the scan started. The scan is performed by moving the body inside the CT machine, which this time I was completely calm and not stressed at all. During the scan, you don’t feel anything, and the machine may make a motor-like sound when the scanner rotates inside, which is not a cause for concern, and you just need to stay motionless for half an hour. The only thing I felt was a very brief moment of dizziness for a few seconds, which I think was due to the effect of the waves as my brain passed under the machine, and I didn’t feel anything else. Even because the room had air conditioning and was very cool, considering it was July and very hot outside, it was quite enjoyable, and I was having a good time.
After the scan was finished, the doctor asked me a few questions about myself, and my work for today was done; I was led back to the room I was in, and I put on my clothes, and after about 10 minutes, the doctor came and led me out through another door that opens completely to the outside of the clinic (meaning completely outside to the street). There is also a “No Entry” sign on the entrance door of the hall after the injection, meaning I no longer have the right to enter there, and they said they would call for the results. Outside this door, my father, who was accompanying me, was waiting, and he said there was a room next to the guard where we could sit and have breakfast, which was mostly chocolate and sugary items and milk, to bring the blood sugar back up and eliminate the lethargy afterward.
The reason you have to be careful after the injection is that due to the possibility of radioactive materials being present and dangerous for those around you, you should not go near children for a short time, be near a pregnant person, be near weak people or elderly people until these substances are completely expelled from the body by going to the bathroom, and also after using the bathroom, flush twice or if you take a shower, rinse the shower area. After all, caution is the parent of safety. :)
Well, after 5 days and receiving the results, which they deliver in a binder-like folder along with a CD and full reports, and because the content is lengthy and specialized and there is no need for it here, I won’t put it here because it varies for everyone, but I will write here the part that is noteworthy.
The report, in addition to containing images with a lot of detail, includes several textual reports that have examined the normalcy of various parts separately, such as the head and neck, chest, abdomen, etc. For me, most parts were normal, and both my own doctor and the doctors I later visited for radiotherapy said that the results were very good and that chemotherapy had been completely effective. Also, the notable parts of this report are written in bold. To summarize, what I understood from it was that there was only mild abnormal activity in the Thymus area, and regarding the chest, lungs, head and neck, and other body areas, everything was normal, and there was no abnormal activity, which was a very good result.
As I said, the doctor said that the results were very good and the treatment was effective. This relates to the day my father took the report to the doctor, but they said that to completely eliminate the disease and prevent its recurrence, radiation therapy must be performed, which is one of the methods of combating cancer. You can read about it in these links. Right now, as I am writing, I am undergoing radiotherapy, which I will not say much about here and will explain separately in the next post. Just to say that it is not very difficult and is much easier than chemotherapy, and the sessions are daily.
I hope you have found this article useful. I spent a lot of time experiencing and writing this article in this series of my writings (and wrote part of it daily in peace), and now that it is 4 AM as I finish writing it, I feel very good. I hope reading it has been just as enjoyable. Thank you for taking the time. Also, I am very interested in content creation, and if you liked, you can support me at https://zarinp.al/@ainyava so that I can spend more time on it. If you have any suggestions, opinions, questions, or anything else, you can leave a comment or find me on social media with the ID @ainyava. If you consider me worthy and would like to talk to me or ask a question, you can join my Discord through this link (I am not a fan of phone calls and prefer internet calls, texting, chatting, emailing, and messaging, but if it’s the only way for you, my phone number and WhatsApp is +989359898799). I would be happy to share our experiences, etc.
Until the next post, wishing you success, satisfaction, and respect,
Hamed Mahmoudkhani.