Radiotherapy, hair and boyfriend

Thursday, November 24th,

It was my first radiotherapy appointment !

Radiotherapy isn’t at all like chemo! No drugs nor IV! It’s radiation! Not nuclear but particle accelerator sent directly where the tumors were located! It burns the cell by dammaging its DNA and, in theory, only sane cells can repair themselves!

However, this increase risks for secondary cancer in the the region where the radiation happen! For me, since I’m a girl, it could be breast cancer! The doctor told me she will discuss it with me more in details  at the end of the treatment in case my breasts received a little radiation!

Secondary effects according to her are like discomfort to swallow, skin burns and fatigue mostly!

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Brown wig

 

 

 

 

I will not have heart radiation and only a very little radiation on my lungs! 

The only really annoying thing is that the appointments are EVERYDAY ! And that I take like 1h30 roundtrip house – hospital !

15 appointments in 3 weeks for a total dose of 30Gy.

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Blond wig

To avoid doing tattoos on my skin for radiation targets, they created a chest mold in resina ! When I get there, I lie on a table, they put it on me, it’s really tight, and then they fix the chest mold to the table so I litterally can’t move even one millimiter away!

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the wig collection

 

 

My boyfriend finally came, after 3 long months, it wasn’t really easy the distance and going through cancer and treatment for me like for him! We talked about it and I still was really happy to see him, even these 5 little days! We went to Nice and Barcelona ! I had a really great time and I hope to visit him as soon as I finish treatment ! I’m thankful he was here for me during treatment, even if he wasn’t really comfortable talking about the medical stuff! I was strong because I had him on my side too!

My hair that felt aren’t growing yet, but its normal, it should grow pretty soon! the one that stayed grew really weird and all thin and weak so I shaved everything again so they all can grow together now! 

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6th chemo and break

Dear readers,

I’m finally back after a month leave from the blog. I didn’t want to abandon it like I did, nor the writing and sharing. I guess these last few weeks have been pretty rough. I always thought that the hardest part in having cancer and going through treatment would be the physical side effects and the uncertainty of if you gonna end up surviving or not. But it’s actually far from being the only challenge. And it is almost the “easy” part as you don’t have to make much decisions, you are being told what to do…
After-cancer is a mental battle. And that’s what I have been struggling with lately.

According to my psy, I suffer like most of other cancer patients of symptoms like PTSD. I know that sounds pretty funny as I did not got in war zones as veterans. But I kinda went tho, inside my head.

You see, for the past months, I have been living day by day, not making much plan, just to go through each day of treatment and try to make it as best as I can. I didn’t care at all of what would come after that, because I was not sure I would have the chance to be able to make futur plans too far…

When my oncologist told me that my scan was really good and that, if the remission is confirm on my final TEP scan post radiotherapy, which will be on January 19th, I will be finally FREE, I started to get scared. That I wouldn’t be able to go back to normal life.

It’s like the who I was, young, going out with friends, thinking about long term career goals and travels and the who I am during treatment, avoiding bacterias, staying in, resting, trying to not push my body too hard, no smoking, no drinking, no risks are battling.
One is telling the other that she is doing silly stuffs!

So at what point should I come back to the person I was before? Should I even ? Could I ? There’s no real answer according to the psy, only time is needed. I need time to trust my body who once betrayed me. So I can live without all those fears. But how could I really when the oncologist tells you that you will still be monitored at the end of the treatment because relapse occurs. In my case fortunately, relapse risk isn’t very high, but still slightly above 10%. This is not including damage from a tough treatment on the heart, lungs and rest of the organs nor the risk of secondary cancers, increased by the same treatment that save me from dying from the first!

I guess I do need time. Day by day, when feeling better and  better, I’ll learn how to trust life again! I’ll learn how to project myself in the future, more and more far everyday.

Don’t get it wrong ! I love not being worry about the day tomorrow, like i could disappear in the time between that. But it is just not really applicable with the life going on. And also I do believe that life consists in wanting stuffs! Being indifferent is like being dead.

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Wednesday, November 2nd,

It was my 6th and last chemo !

I went with my parents ! We did an apéro at the hospital with non-alcoholic beers and snacks! And took videos! Maybe I’ll do a little surprise and share it soon !

But white cells were OK but not my red cells! I was in anemia! And close to do a perfusion of blood so it can get back to an OK level! The thing is that since it was my last chemo, it wasn’t critical so I didn’t not do it! But the round because of the anemia went rough!

Red cells are transporting the oxygen and are necessary to be able to breathe, live and move correctly!

I basically spent the entire week in a bed, couldn’t stand up more than few minutes because I was really weak. My parents were trying to feed me some red meat for the iron to help but it was so hard to even get hungry and digest something that difficult!
Hopefully, the shots of Granocyte came at Day 6 to help boost my system and the weekend of November 13th, I was back on my feet!

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Sunday, November 13th

I headed to Paris for 10 days of class and exams. Since I wasn’t able to study the day before, I had to catch up a lot of materials in a really limited time! The weekend after, I went out even though I was tired, but I was just really glad to have the occasion to! I drink a bit of alcohol, nothing strong really but I did it! An additional step back to normal life!

Wednesday, November 22nd

After taking my last exam, I went back to get my stuff and left to Marseille! Already!
I cried a little! I was scared to start treatment again after feeling much much better lately and starting to enjoy my life again! Last chemo was already 20 days ago!

Tomorrow, Thursday, November 24th, I start radiotherapy !

PET Scan Results !

Monday, October 17th

It was the moment I was waiting for since days with my parents. THE PET scan to see if chemo is working on me alright.

My doc already told me before that there is a great probability it is. And if not, there are other chemos and other treatments to try. So I tried to keep an optimistic mindset !

Once lying in the scanner, after an hour of IV perfusion with radioactive element, the assistant tells me

I’m gonna inject the iodine now. It’s going to feel like it burns. Don’t worry, it’s normal. Try to breath peacefully and it will be soon over! Good Luck!”

I’m like, what is he talking about ? I never got Iodine during my previous PET scan. And it started to burn. From my oesophagus to my bladder. And I wanted to pee so bad! Omg. Really not pleasant. Hopefully, it only lasted like 3 minutes. WOW

When I got out, someone tells me the doctor is going to see me for the results. My dad comes with me. I arrive in the little room where the doc is screening all the PET scans and writing the results down. There’s one screen showing a scan with a patient full of cancerous lymph nodes at upper level of the body. More than I had when I begin even. I’m like … Huh

“Hey Ms Sally, so I reviewed your PET scan and I don’t see any evidence that the cancer is left! Which means that once your treatment is over, you are done. Congrats!”

14813213_10209776425301280_1466929735_oThe Scan at the top is the recent one. The one below is from last July. And on the left at the bottow , the conclusion saying there is no detection of the cancer activity.

Of course, I start automatically shedding tears, very moved. My dad too! I smile and thank the doctor. Then my dad call my mum and the rest of the family. I hear them laugh of joy and it warms my heart. I barely can talk back to them as I’m still under a great deal of emotion. It feels AMAZING to know that I’m almost done spending my whole life at the hospital or sleeping because of treatments. And that I’m going to live. Not just months or few years. Just live.

My dad propose to celebrate at the restaurant. So we go and I get a delicious goat cheese and honey pizza. YUM

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SO WHAT’S NOW ?

Well, I still have 2 chemo rounds left and 3 weeks of radiotherapy. To secure the remission.

As you might already know, we don’t get instantly cured of cancer. We enter remission. Which means that the scanners and medical screenings can’t discern evidence of cancer. Which is of course amazing!
However, active or latent cancer cells can subsist in the body (and in my case, in my lymphatic system) and be undetectable. This is why I have to finish treatment to give me the best chance of complete remission without futur relapse.

Radiotherapy especially is going to irradiate little zones where I had cancerous lymph nodes and break the DNA of the cells around. Only sane cells can repair themselves and survive. The bad ones die.

So that’s the super news! I will finish treatments on the last day of radiotherapy, which is December 16th. Right in time for my 25th birthday and the year end celebrations !!

I feel so relieve to see the light at the end of the tunnel! And it gives me the motivation I needed after this past week to finish the battle!
Around 8 weeks after the last treatment (End of January – Beginning of February), I will have the final PET scan to confirm my official complete remission and to demonstrate that the cancer is not coming back right when the treatment stopped.

Then, I will have scans and doc appointments every 3-4 months and then 6 months during 5 years. After 5 years of clean scan, you are considered totally cured since risks of relapse for Hodgkin’s lymphoma after 5 years of remission are very rare or even inexistant!

Surgery to pose my Port-a-cath for chemo

This entry is part 13 of 21 in the series Oldest to latest posts

Tuesday August 23rd

I posed a PAC (port-a-cath or chemo port).

What is it ?

The chemotherapy works by injecting medications (or rather poison) in the veins. But, in order to do the chemo treatment, they need to inject in the arm veins again and again, during months, which can cause a lot of problems because of the products’ toxicity. Also, it often gives the sensation of burning because of one of the product in the chemo cocktail.

For all these reasons, in addition to infectious and safety issues, doctors prefer to pose a PAC when you need many chemo rounds.

It’s a little case with the top covered with a thin membrane to sting directly in it. It’s located high in the chest. It’s linked to a little pipe catheter than goes in the jugular vein in the lower neck., way bigger and resistant than the one in the arm. Everything is under the skin. You can just see the little bump at the surface.

VASC-Chambre

The day before and the morning before the surgery, I had to use betadine in the shower to make sure all the regions in my body are sterilized. It’s very important as the chemo which will follow the next day will attack the immune system as well, making me weak in front of all kinds of infections.

I am on my way to the surgery room. Just before entering, I’m placed in a little airlock room. I see a patient getting out of the surgery room and he seats next to me. He also has a lymphoma and start chemo the following day. He’s around 45-50 yo. He’s nice and we talk. He says the surgery goes pretty fast and it’s not too bad. He asks me questions and I answer, pretty relaxed, so appeased than he can’t refrain from asking me

“But you know what’s a lymphoma right?”

I think he’s a bit worried that I didn’t get that lymphoma is actually a cancer. But I know. I just think that you have to go through these things anyway so I’m just trying to keep an Ok face. Plus, if I can get the Warrior confidence look, it’s a bonus!

Arrived in the surgery room, there are three women. Music is loud. Rock music. I would almost forget I will get into surgery in a few minute now.

They give me the anesthesia shot.

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Fall-Winter 2016 Collection for hospital outfit (not kidding tho, it’s much nice than the old piece of tissu I got in Boston, this dark blue..)

The surgeon and her assistant are really nice. They keep talking to me, ask me which songs I would like to hear. I’ve never done local anesthesia so I’m a bit worried that I will freak out at some point if I feel weird sensations. But they are are really good at making you comfy and confident. It is almost a nice moment that I’m living.

The surgeon tells me that finally the port will be put on the left side, not the right. Because I already got a surgery on the right side, and it might have moved around the stuff a little bit. But to not worry even if it’s closer to the heart, because anyway the jugular vein in the left or the right, it’s the same!

They cut in two places. The first incision is on the left side of the neck, above the clavicula, to pose the catheter in the vein. The second is under the clavicula, high in the chest still, to put the little box. They use the echo machine to get a clear picture of my anatomy and get insurance that everything is placed correctly.

The sensation is a bit weird. Well, I’m not really in pain but it’s still disturbing. Especially since I feel the movement, like the surgeon pushing the cable under my skin…

We keep talking. The surgeon studied a part of her medical education in the US so we compare the cities we went to and tell each other what we liked in each. My heart bump a big time. But since I do pretty often tachycardia crisis (nothing to worry about that), I just feel more stressed. I don’t know I start loosing sensation and feeling like I don’t know if I’m doing well or not good. I panic. I tell them.

They stop for a bit. The time to let me breathe, calm down and take my pulse. My pulse is going back to normal and I start feeling much more normal. Let’s continue and finish with this stuff.

Overall, it lasted like half an hour. Very quick!

When I get out, I station in the airlock room as well. A woman enters the room as well. She’s around 40yo and sitting in a wheelchair. I can see she’s pretty weak. She tells me she has breast cancer, but it has metastasized so she is starting chemo in two days. She asks my age. There’s this exchange compassionate exchange look going on. Like, we just understand each other. The feeling of we don’t know what will happen in the futur, we have no warranty or nobody is telling us you’ll be cured for sure. There is just hope. So I wish her the best and luck and we hope to see each other in the corridors of this hospital during treatment.

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I’m back in the room where my dad is waiting for me. They put me a huge bandage, like Miss USA scarf style. It’s pretty funny but I will only keep it for 4-5 hours to avoid having a big bruise.

Back at the house, it starts to feel a bit painful but it’s not too bad. The anesthesia effect is just going away. When I try to drink or eat I feel the sensation, but I got used to it with the drain in my neck last surgery. And it soon went away anyway.

I can’t put water on my bandaids for a week. No pool for me or well, I just put my feet. I also try to adapt when sleeping, because I sleep on my belly pretty often but I don’t want to press on the port too much at the beginning. I’m just getting ready in my head for the next day (chemo).

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How is it 10 days after

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Meeting with New oncologist and IPC

This entry is part 10 of 21 in the series Oldest to latest posts

Thursday, August 18th

Few days have passed since I arrived in the South of France. I spent them mostly enjoying family time and, of course, some good food. I missed the wine, cheese, and dry salame (in France, it’s called saucissons but I feel in English, there is non perfect word to call it because Salame is a bit different !). Now, it’s time to go back to the important matter: get cured.

My mum and dad insist to come with me and meet the new hematologist-oncologist. (damn! it’s a long term)
They heard from him from 3 different doctor friends and he has more than 20 years of experience, so don’t worry for me! I’m in the best hands I could be in!

The Hospital is called Paoli-Calmettes Institute, in Marseille. It’s the big center for cancer treatment for the whole South-East region. Everything is really modern and design in it. It’s almost making you love the place.

By the way, Cancer in France is considered as a long-term disease (even though I hope it won’t be very long for me!). Therefore, all the necessary procedures and treatments are covered 100% by the social security. (Yeah, I realized how lucky we are in France when i start traveling and living abroad. It is sure pretty rare to have such an amazing health system!)

 

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12PM. Time to meet the new doctor. HELLO !
He looks like a nice person and the kind that doesn’t tell you B*******T  either! I like that.
Not like the previous one. Not like Mc Steamy (cf Dr Mark Sloan).
He was nice but between us it got a bit weird.. Ah yes now I remember why!

I was then with my boyfriend in the examination room for the first meeting when he tried to talk about fertility issues after chemo. But instead of giving me time to think about it and be ready to talk, he just went straight to the craziest option (for me).

Best option is that we go directly with the Frozen Embryos technique.

– Excuse me ?

– (While looking at me and my boyfriend with the same stolid like it’s not a big deal) Well, first we would need to get your implant out. Then, stimulate your hormones so you can ovulate. Conceive a baby and once the egg is fertilized, extract and freeze it. It gives really good results! Your best option.”

OK but I’m like not ready at all. Neither is my boyfriend. I mean come on the doctor doesn’t even know which kind of couple we are. I could have found my boyfriend in a bar the day before… (which is what happen. No, i’m kidding with you but you got the sense)

So, let’s go back to what we were talking about! The NEW oncologist here in France.

“Sally, I have read your whole file but why won’t you start and tell me what happen from the beginning.”

I start to tell him what I know. The lump. Dad who insist to get it check. The fatigue. The MRI. The surgery and biopsy. Classes. The first oncologist opinion.

My mum cuts me and start talking. About little stuffs that seriously don’t matter. That she thinks I don’t sleep at night. BLA BLA BLA. But she doesn’t stop. And she keeps going and talking more and more. The doctor look at me and my dad..

“Stop. Now I want silence.

Sally is the patient so it is Sally who talks. Thank you”

Ha Ha! I like this doctor! I don’t mean it is fair to my Mum because I know she’s acting crazy because of the stress. She is just a little bit lost in all of this. But I mean, she deserved to be stopped at some point. And now she knows how the doctor will respond.

He explains us. You have Hodgkins’ lymphoma as you already know. Localized in more than two sites in the upper part of you body, what we call Stage II. You got no weight loss of more than 10% of your overall weight, no night sweats to the point you have to change your pyjama nor fever that last more than 8 consecutive days. Your sedimentation speed is good.

You are what we call a FA-VO-RA-BLE case. FAVORABLE.
“It means that with you, Sally, we go forward with the hope that this first chemo will be efficient and that you’ll enter remission. Understood?”

(Great! It is nice to hear it again even tough i knew it already! I guess it is very good for my parents to hear it from the doctor’s mouth, face-to-face. Especially for my mum ! I imagine that if he was saying UN-FA-VO-RABLE, the atmosphere at home would be much more pesant !)

Now, I have the report of my American colleague, who suggests a treatment by 6 Cycles of chemotherapy type ABVD (it means 6 months so 12 injections with one every two weeks).

But, I do the things a bit differently! Recent researches have shown that patient following a combination of chemo and radiotherapy showed a lesser risk of relapse with this disease than a longer chemo. But I’m gonna be very honest with you!

Thirty years ago, radiotherapy wasn’t as advanced as today and it wasn’t allowing us to target small regions of the body without risking to affect nearby organs. There has been an increased risk of secondary cancers for these nearby organs. However, today, we have the “in-node” technology, allowing us to target up to a group of cells, very precisely.
There is still a risk! And I won’t be lying to you saying it is 100% safe! But this risk is now very very small!

Since 20 years that I have been doing this job, I saw around 50 cases of Hodgkins per year. 40% were women. In total, I treated around 500 female patients. I only had 3 who came back for secondary cancers, especially breast cancers. Less than 1%.

This risk exists! But it’s small. If you get another cancer because of that.. How can i put it in word gently .. It’s TOO BAD! But according to me, radiotherapy is a crucial tool in the treatment of localized Hodgkin lymphoma to consolidate and lower the relapse risk. I would advise this to my own daughter. It’s 3 months of chemo and 1 month of radiotherapy. I’m taking an appointment with the radiotherapeutic doctor so you can talk more in-depth with her. Anyway, till November, the course of the treatment stays the same. Radiotherapy only happens after chemo is over.”

Once the appointment is over, I go to the lab for another blood test. I should get used to it as I will do one every 2 weeks.
Do 3 months of chemo instead of 6 would be way nice, even if I’m a bit concerned of the risk of radiotherapy. We talked with ma parents and decided that we will take the time to get more info about it!

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Hodkin’s Lymphoma: The Beginner’s guide

This entry is part 7 of 21 in the series Oldest to latest posts

I read like 50 differents articles about the cancer so I hope I can deliver a clear and quick snapshot at what it is.

Lymphomas are a type of blood cancer. More precisely, it is a cancer of the immune system (composed avec the lymphocytes cells) and can reach out to the lymphatics organs like the spleen and the bone narrow if the stage is advanced.

Hodgkins is one of the two categories of lymphomas (the other is non-hodgkins). It represents around 15% of all the lymphomas and 1% of all the cancers. There is around 3 cases of Hodgkins’ lymphoma per 100,000 people.
The age group that are the most affected are the 15-30 Years old and the over 45-50 years old.
The causes of this cancer are unknown.
The only way to diagnose a Hodgkins is to realize a biopsy of the lymph node and observe the Reed-Sternberg cells who are only present in the Hodgkins condition (It’s a big monster cell instead of a regular lymphocyte cell).

The prognosis for Hodgkins depends mainly on:

  • Patient’s age
  • Stage
  • Symptoms and overall wellness of the patient
  • Size of the tumors
  • And most important factor, the response to the first chemo treatment

The cancer usually starts by the lymph nodes in the neck or in the chest before spreading and heading down in the body.

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There are four general stages of Hodgkins:

  • Stage I (early stage) means that cancer is found in one lymph node region.
  • Stage II (locally advanced disease) means that cancer is found in two lymph node regions on one side of the diaphragm, which is the muscle beneath your lung. It may also indicate that cancer was found in one lymph node region as well as in a nearby organ.
  • Stage III (advanced disease) means that cancer is found in lymph node regions both above and below your diaphragm. It may also indicate that cancer was found in one lymph node area and in one organ on opposite sides of your diaphragm.
  • Stage IV (widespread disease) means that cancer was found outside the lymph nodes and has spread to other parts of your body, such as your bone marrow, liver, or lung.

Treatment

The main treatment options are chemotherapy and radiation. Radiation therapy uses high-energy beams of radiation to destroy cancer cells. Chemotherapy involves the use of medications that can kill cancer cells.

Bone narrow transplant are used in case of resistance to chemotherapy.

Main symptoms

  • night sweats
  • itchy skin
  • fever
  • fatigue
  • unintended weight loss
  • persistent cough
  • pain in the lymph nodes after consuming alcohol
  • enlarged spleen

Prognostic

Usually good, especially for localized stage (I and II) and thanks to the newest medical advances. 

According to my oncologist, there’s a 90% chance to enter remission after this first chemo and 95-98% chance to be cured (with one or more treatment) for my age group and stage.