Chemo Port

Today I had the port put into me.

Some of you may not know what the port is, so here a (very) brief explanation.



"A chemo port is a thin, soft, plastic tube surgically implanted into a vein in your chest or arm. It allows healthcare professionals to draw blood and deliver chemotherapy drugs directly into a vein without having to insert an IV needle each time. The chemo port produces a small bump under your skin".



The procedure of putting the port in is supposed to be quite short, 30 minutes, with only a local anaesthetic. The surgen opens the skin on your shoulder, sews the port to your breast muscle (in my case on the left side) and enters the tube into the vein, which is right there...

This is if the vein is there. In my case the procedure took 3 hours, 3 hours that I was quite awake, hearing the cuts and feeling the pulling and pushing. After 2.5 hours the head Doctor had to come to find my............I was told that I don't have enough fat on me, which makes finding the vein quite difficult.

I now have a port in my cephalica through venae sectio-in case somebody wanted to know the medical term!

Well, after 3 hours I was ready to go. Now everything went well, but don't be mistaken for one second to think that I was feeling well. The port is a foreign object in your body, and my body started revolting...it felt as though I had a belt strapped around my chest and somebody was pulling as hard as they can.

In the end however, all worked out.
Now I am all ready to get my Chemo....

I have a small heart!

I am serious. It was confirmed today.

In preparation for Chemo, I had to have my heart checked. I am all good and ready to get the treatment, at least heart wise. However, I do have a small heart!

Telling people

I am quite reluctant to tell people about being sick. Why? I have no idea. My Mom is telling just about everyone she knows-I guess that is her way. People are posting on Facebook things that make other people think and wonder.
Sooner or later I may tell, for now I don't want questions. I don't want to answer the dreaded question of "how are you?"

"Well, how would you feel if you were told you had cancer? Great! I am doing wonderful!"

I know, I know! People try to do the right thing. People don't know...sorry, but right now I just don't feel like caring about others! Thanks

IVF and bone scintigraph

M.'s Mom left yesterday. I feel sad for him. I know it helped him to have somebody around, only for him. Somebody to hold his hand. I wish I could help him better.

We made a deciscion. We will do IVF. My Dad is kind enough to help us out with the finances, and loans us whatever treatment will cost. So, I got my first shot today, that will cause my natural hormon production to stop. Starting tomorrow I will have to give myself a shot of hormones that will cause my body to produce eggs...fun stuff.

Before getting my shot I had an appointment for my bone scintigraph to scan my bones for metastastis. It went ok. It's the waiting and the waiting room that really causes me stress. "Patience!!" I tell myself, as I look around into one sad face after the other.

Oh, I had some waiting time between getting my radioactive fluid shot and the actual scan so M. and I walked to the other hospital to get an appointment for the port. I have decided that I will use the chemo port..

I sure am glad to have M. here and that he is patient enough to come and sit in the waiting rooms with me all day!

Treatment plan

So we had a few days off from Doctor's appointments and were able to keep our mind off of things, show M.'s Mom around and enjoy a bit (if that was even really possible).
No free time today!

First we met with Dr. G. to discuss what the tumor board has decided as to what the optimal treatment would be. She explained me that they feel that I should get "neoadjuvant" chemotherapy-meaning before the tumor is removed. Dr. G. explained that resaearch has shown that doing it that way has better results in young women. After chemo, I should have surgery to remove the tumor, and after that radiation. One thing that is different if you have neoadjuvant chemotherapy is that the Doctors want to remove (a) lymphnode(s) before you begin treatment because else there is no way of telling if there are any cancer cells in the lymphnodes.

So the course of action is a little bit more planned now:
1. check for metastasis in lung, liver, and bones
2. surgery for lymphnode(s) removal
3. chemo
4. surgery tumor tissue removal
5. radiation
6. remission

After meeting with Dr. G. I went to the Oncology department and met with Dr. R. She explained me how Chemo will be, what will happen, my hair falling out, "here a prescription for a wig"....yes it was too much. Way too much! I am not sure why, but losing my hair is really bothering me. A lot.

After that appointment we had time for a quick lunch, which I don't remember too much off, except being upset.

Afterwards we had an appointment with the Children Wish Clinic.
There are 4 different options of preserving the option of having children in the future, should the Chemo destroy my ovaries:

-a shot to put me into menopause BEFORE chemo starts, it is the cheapest option-insurance pays it in full-but one that bares certain risks
-IVF-very often used, insurance will NOT pay, since I am not fertile (yet anyways), and we are looking at a cost of about €5000
-removal and freezing of ovarian tissue, which can later be implanted-not very much experience with this method yet, worldwide there are 8 children that were born through this method.

Too many choices and options really. And too much money. I am confused-what's new.

After that appointment I still had to go to get an ultrsound of my liver done-no metastasis. Good news at last!

I am tired and exhausted. I know this is only the beginning but it is too much.

Breast Center

I went to the Breastcancer Center today. My Mom went with me because M. went to pick-up his Mom from the airport.
Dr. G. will be my Doctor for now. She seems quite nice and thorough. She said that they still need one letter from the pathologist before they can give me definite recommendation for treatment, but that Chemo, surgery, and radiation are most certainly in my future-at least from their stand point.
Also, she explained that if I will get chemo, this will cause me to be in meno pause and can damage the ovaries permanently-so I need to meet with the Children-Wish-Clinic which at least is in the same building.
After meeting with her my Mom went to work and I had a bit time before going to the next hospital to get an MRI done. I have had one MRI before and it was no problem, uncomfortable but doable. Not this time. No no no! About 10 minutes into the deal I could not handle it anymore and rang the bell and told the ladies to get me out of there...so we will have to do it again sometime! Great!

Last night...

...I had this nightmare that I had breast cancer. Then I woke up this morning and realized that it was reality!





M. is scared. I see it when I look into his eyes. I try to comfort him but just can't find the right words. He has asked his Mother to come so that he can have some support. He realized that his job is being there for me now, and that I cannot give him much...I am glad she is coming.





I am confused!

Edvard Munch's "The scream"

~H.

Second opinion

Okay, it has been a few days, and a lot has happened.

Originally, the Doctor that gave me the result of the biopsy, let's call him Dr. K. had set up a surgery date for me on the 11th. He explained me that it was important that we operate quickly, that Chemo would not be neccessary for me, and that "maybe" we'd do radiation...but for now we needed to operate. Well, when you are told you have cancer and in the same sentence you are told you need to have surgery in 3 days, that's a lot. Anyways, I did agree to having the surgery, and he set it all up for me.

The day after I had found out, my Mom called me to tell me that her friend S., who works for the Cancer Information Service as a Psychooncologist, recommended I go to the University Clinic, since it is a Certified Breast Cancer Center. S. had explained my Mom that these centers are most up-to-date about treatment options etc.

So, off I went to Dr. K. to explain him that I would have to cancel the surgery because I only got an appointment at the Uni Clinic on the 11th. It appears that he was offended that I wanted a second opinion. He went on to explain me how that is very foolish of me, that I would regret that later, and more or less pushed me out of the room with the words "I wil see you on Thursday in the surgery!".

Wow! Here I am, confused as I can be, and this person is just causing me even more confusion. So I felt unable to say anything and just left, crying to M.

During my morning run the next day I felt that I really needed help in this dilemma, and that I just did not comfortable with Dr. K. treating me this way. So I went to my family practitioner, Dr. A. explained him the situation. He agreed that I needed to go to the Uni Clinic, and said that he would call Dr. K. to cancel the surgery and request that he would send me all the documents I needed for my appointment.

It is hard to explain you how difficult this was for me. Normally I am not somebody that really minds speaking up, but the diagnosis has confused me so much, mad my head spin around a million things at a time, and in this very moment I needed a Doctor who is supporting and helpful, not one whose ego is too big to let me do what I should do-get a second opinion!

~H.

Crash boom bang

"CRASH BOOM BANG!!!!"

That's the sounds I expected to hear when a life shatters. Not in my case. For me there was silence. Nothing.

I remember sitting at the Doctor's office, late in the evening, seeing his mouth move but hearing absolutely nothing but complete silence! Mamacarcinoma-I knew what it means.

BREASTCANCER

How did I get here? How did this happen?

A few weeks before that I felt a lump during my self-exam. At 27, anybody will tell you "a lump doesn't mean anything" which is why I only told my husband about it. However, I had a really bad feeling about it, which is why I went to see said Doctor. A fine needle biopsy came back "suspicious"and the mammogram did not show much, which is why a deep tissue biopsy was taken....the result "not very good, Mrs. S.".

When I left work I had tried to prepare myself for this moment. "You will not cry! You will be strong!" is what I told myself. Reality was different. I was not prepared to hear that I have cancer, and now I was sitting there, still, unable to think or speak.

M. and I left the Doctor's office, he took my hand, silence. Neither of us was able to speak. We just walked. Went home to call our family and tell them the news.

"I have breastcancer!"

"What? You mean you have a lump? That could be anything!"

"No, it is sure. I have breastcancer"

"Silence"

"I love you"

"Silence"

What do you say in this moment? I am still unsure! I don't know! I suppose there is no right or wrong thing to say!

I am 1 in 8

On March 8th, 2010 my life, and that of my family and friends, was turned upside down and inside out! I was diagnosed with breast cancer.

1 in 8 women will have the same diagnosis in her lifetime.

BREAST CANCER! There you go! Now you are on of the statistics-deal with it!

I am not the "average" breast cancer patient, simply because of my age (the average age of patients is 63), but I am 1 on 8, one of the thousands of women that has to live with the diagnosis...

I have decided to keep this blog as a "diary" of my own, personal journey...also, I have decided to only share it now...at a point that I am a lot more comfortable with things....

That is it for now....lots of love

~ H.