30 November 2017

Chemo day…. At least that was the plan!

Chemo nurse Fassbender gives me a very concerned look, as I enter coughing away… the usual: she checks my blood, checks my temperature and says that I have a fever…. hmmm…. additionally her and Dr. Reiser are concerned that I am still coughing and make an appointment at the PAN Klinik for a quick lung CT. No chemo today, but as I am disappointed, Dr. Reiser promises me to simply skip this one 😉

Nurse Fassbender tells me to use the week to rest and recover now and to not go out …. she is reading my blog, so no getting away here. I promise to do so!

I take the tram and hurry to the Pan Klinik. The radiology brings back memories of the day I got my diagnosis, but it is ok. No crying this time during the CT 😉! I get the results and it is probably an atypical pneumonia and it has been there for a while.

Back to Dr. Reiser, who calls the hospital. He wants to have a bronchoscopy, where they flush the lungs, test what was flushed out and determine afterwards what is inside my lungs in order not to waste time with the wrong antibiotics. He is such a nice guy and we laugh a lot, he gets the paperwork ready and off I go to hospital.

Cardiogramm first, then nurse Tobi tortures me digging for some venes and they get me to inhale for a long time. The doctor examines me and says that I will have to stay for two nights and I need to get things organized. Markus needs to pack my things and as he needs to pick up the kids from Nina, I post for the first time a message in the What’s App group „Alex needs help“ for someone to bring my stuff to hospital. This is amazing – they actually battle about it, but Michael wins!

Poor Markus – it is quite a challenge for him to find all my things and coughing telephone instructions don’t help. On top of this, I planned to get the advent calendar ready in the afternoon, which he will also have to do now with my barking guidance via the phone once the kids are asleep.

I get a room quite late and it is quite grim – there are no single rooms available … I hope the old lady next to me does not snore 🙈 she is big and a smoker and whinges…. fingers crossed. I did already warn her about my coughing, but the nurse said she would give me something for a quiet and peaceful night for both of us 😴Tomorrow they have a single room for me!

The good thing about the hospital is that there are no alternatives to resting and no kids, who wake me early! I feel sad though that I could not even say goodbye to them and asked Markus to let the kids call me via FaceTime before they go to sleep ❤️

They only wanted to start with the antibiotics after the bronchoscopy, but while Michael is here – he brought drinks, magazines and candy and we chat away – they start the antibiotics infusions anyway?!?! I inhale and shall wait for the things to come….

29 November 2017

„Chemobrain is like a mix of ADHD & early Alzheimer’s.“ I read an article on ‚I Had Cancer‘, which made me laugh and actually summed it up so well… „I wish, I wish, I wish, I’d known about the feelings!“

The psychologist actually put it so well yesterday. „You are very thin skinned and need to look after yourself and be with yourself…“ and this is where the conflict lays – on one hand and in theory, I am determined and have the best intentions to meditate, look after myself, be self-contained, but there is the restlessness, which makes it very difficult at the moment to stay focused. I have difficulties concentrating on a book, on meditation or on being there and then in the moment – even with my kids. My mind is all over the place and though in theory I am aware of it, I often cannot make it stop wandering. Apparently the intuition training might help me with this and I shall give it a try.

The longer I am on this journey, the more I appreciate the opportunities this time holds! – Without cancer, I would not have had the chance to look at myself and after myself in the way I do right now. It is the chance to step back and reflect on your life, rethink and make changes and adjustments, where necessary. I have learned that you always have a choice and what used to be my credo „love it, leave it or change it“ needs to apply to all areas of my life again. Any massive changes have to wait until the cancer is gone, but I have changed a lot of little things already and I think I am really lucky to have this opportunity.

Today is the opening of the little Nippes Christmas market and I shall visit it with the kids  and maybe I can even get a haircut for Leo beforehand? We shall see…and I still have to get the kids‘ advent calendar ready…. and the HRG Christmas bash already starts at 6.30pm….ahhh! Well, no sports today and hopefully all will fall into place 😉

HRG organized a Time Ride – a virtual reality tour through the old Cologne followed by a great evening at the Maritime Hotel. It was lovely catching up with the colleagues and the everyone hugged me and wished me well. I had some wonderful conversations – obviously speaking way too much and did not want to leave. It is chemo day tomorrow, so I am home now.

I feel slightly sick, when I get ready for bed and suddenly I have to throw up…. I hope it was just the food and the coughing and that I can have the chemo tomorrow! Today I did stay in bed until the afternoon – with the exception of breakfast and a brief visit from Sandra…and that is the plan for tomorrow – I know that I need to slow down!

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28 November 2017

What a day! Well, it started easy with a yoga massage – pure bliss!

Dr. Zenev makes sure there is no infection in my throat, fungus is gone, blood is ok, but he reckons since I am there, I might as well have another laser session and he is such a fun character and really makes me laugh! Cough Sirup for another day, but also an aerosol and the stuff Dr. Reiser prescribed again….. somehow I think it is getting better – I can actually talk a little bit. Dr. Zenev tells me to go to sleep, when I get home, but I have two kids, I am booked into a nude art session tonight and have my company’s Christmas party tomorrow….hmmm, I promise to sleep early after chemo on Thursday 😉 and I am seriously considering not going to the running mamas tomorrow for the first time since my operation!

I see my gynecologist for a prescription, get all medication and rush to Holweide to see the psycho oncologist Beate Rahn. She actually tells me to see her again in two weeks time. I had a bit of an eye opener today and despite the fact that the intuition center visit with her was a bit too spiritual for my likings, I think I might go for a free test session.

Hush hush home to meet the kids, take Leo to kids gym, quick tea with Lea and her dad and rush home to bake those cookies with the kids and Steffi. It is actually really cute how Mia and Leo are rolling the dough and both seem to have a flour fetish…. they put it on everything and the stuff is everywhere!

Markus comes home and I rush off to the nude art session. I am late, but it is nice and relaxing. I wonder why the model always looks at me, but then she asks me during a break, if I can give her one of my candies…. hmmm… had just finished them. Sorry!

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Laser girl in action!

27 November 2017

Oh well, where do I start – yes, I am still coughing and yes, it feels like there is no improvement whatsoever!!! I have enough! I cough all night, my lungs are hurting and by times I feel I will throw up… and I get headaches. I am never ill and I get a headache max. every second year… The solution – yet another visit to the ENT doctor. Blue tongue, laser, I shall no longer use the spray, but cough sirup instead, shall inhale and see them again tomorrow….. Straight to the physiotherapist for lymph drainage, acupuncture and the infrared lamp. This time I do not get the long term acupuncture needles to see, if it makes a difference 😉

I do inhale NaCl with a glass inhaler, which I got 2014, when I had the vocal cord infection – it looks a bit like a pipe and is actually the least messy solution. I feel already a little bit better!

Today is our traditional Christmas cookie baking bash with my cousin and all the kids…. I do manage to prepare the dough just before they arrive, but the last lot just does not seem to  stick well enough – we try all… more butter, more fridge time, but nothing helps and these are the ones the kids are supposed to decorate 😦 well, as they leave we figure that I put by accident the double amount of flour…. ahhhh!!! Fixed the dough and will have to find time tomorrow sometimes to bake them by myself now – that was not the idea 😉

I shall skip yoga today, as all week is packed and I need to be fit – I really miss yoga, but I figured that my voice needs a rest! This is what bothers me most – I really want to do things and my body stops me…. well, after almost four weeks this simply must get better now!

Concerning the psychooncologist, the health insurance does not want to pay for the one I picked, but I had to contact a central service team of the „Kassenärztliche Vereinigung Nordrhein“, who promised to find someone on my behalf this week. Fingers crossed – I will see the one I found next week anyway and pay myself!

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26 November 2017

Today, Kathrin (who I know from two baby courses), was selling at a kids flea market and will donate all on my behalf to the Rexrodt von Fircks Stiftung. Therefore I had to go and give her a few things to sell as well. Including donations, she made a total of €100! The organisation focuses on the children of breast cancer patients and offers a rehab programme by the sea, where mothers and their children recover together. At the breast cancer day, they explained to me that they have separate activities for the children, as I was worried first that I would actually not recover, if the children are with me all the time. I have their details and am still considering, if this will be the right rehab for me, as Mia is quite young, but will probably go for it. Regardless if this will be my rehab, I think it is a wonderful approach worthwhile supporting!

I went to see Maja for a quick tea afterwards and suddenly I feel weak – had to leave the party last night early as well and feel like it is getting worse… Therefore I have a stay at home day for the rest of the day without speaking and I shall do the same tomorrow morning!

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Thank you, Kathrin!

 

25 November 2017

I did buy RevitaLash today and apparently this is the hot stuff you need, if you are loosing lashes due to chemo and there is even a chance that they regrow during chemo!?!? Katie recommended it and sent me a kit with more of their products! Thank you – I am super excited and shall report 🙂

Despite the fact that I feel fit, but am extremely annoyed with the coughing… there seems to be no improvement whatsoever, but then again, I went out quite late last night…. whatever! I just take what the doctor perscribed, have tons of cough sweets and drink plenty of water…

We had a relaxing day visiting Carla’s family, I took Leo to the children’s theater, met the girls and tonight Pam is babysitting, as Kotchi & Patrick have their birthday bash at Nachtschwärmer. Despite having a sore chest and being tired, I still have this urge to go out and feel alive, but will try to talk less….No rest for the wicked 😉

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It was a lovely night, but my head almost explodes from coughing as I ride home…

 

24 November 2017

I love this new chemo – apart from my cough there are almost no side effects. I am awake for four hours during the night, but it is quiet and peaceful and I feel fit. I hear the rain, watch a good movie, read a bit and at 5:30am Leo joins me and cuddles and we sleep for another good hour. I feel emotionally strong, have a few appointments and look forward to going out tonight!

The coughing comes back by lunchtime… ahhh! I am exhausted. I get my throat lasered again and the infection is apparently better, but the coughing is horrible and I cannot talk….grrrr!

There are a lot of new babies around and I just love them. It makes me realize though that due to the chemo I will never ever be able to be pregnant again, which makes me sad. I would probably not have had any more kids, but the fact that this decision was taken away from me bothers me. If I had been younger, I would have considered freezing a few eggs, but not at the age of 44 and I am over the moon that I have Leo and Mia, which already was a miracle I would not have imagined when I turned 40 ❤

OK, I need to go out – guys, I gonna see you at Kuen! Just don’t make me talk 😉

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… the very sorry state of my lashes 😦

23 November 2017

If you ever have cancer and want to watch a movie, DO NOT watch „Love Life„…. I watched the first part earlier this week and decide to finish it of last night before going to sleep. BIG MISTAKE!! She has breast cancer, her husband cheats on her, she is fine again and they want to divorce…this is where I had stopped…. and then the cancer comes back, she will die and she has a five year old daughter…then she dies! Bam! Thank god there were a few close friends, who just happened to write to me when the film was over and I was sobbing. It did not help that I only had five hours of sleep the night before and just wanted to be fit for chemo. To lighten the mood, I did watch a bit of Amélie, which always cheers me up, but had a restless night. I easily cry with movies, but with the cancer it is crucial that I do not pick the wrong movies, which I did already once…. any recommendations are welcome here!

I was also still disappointed with the results more than I had admitted. Yes, it is shrinking and yes, that is great, but if you look at the facts from a mathematical point of view:

  • 1st EC chemo – no shrinkage, but tumor is softer
  • 2nd & 3rd EC chemo – it shrinks 2cm to 6mm
  • 4th EC chemo & 1st and 2nd T chemo – 6mm to 4mm

and use linear interpolation, you would certainly come to the conclusion that it should have disappeared.

Today is chemo day and I ask chemo nurse Frau Fassbender, who says that chemos and cancer do not work this way and I just have to accept it. I had no expectations beforehand and I shall try not to think this way again… she did confirm that my poor health and weaker mental state during the last three weeks were not the reason though 😉

Frau Fassbender gives me cooling gloves and asks how my feet are doing – there is a lot of air underneath a few of my toe nails and I will probably loose the big toe nails at some point… she said that this is normal and I should go and see a podologist to make sure that there will be no infections and next time she will cool my feet 😉 Great – I did not have a pedicure since they told me I was not longer allowed to paint my nail 🙂

Further I found out that the throat fungus is apparently also quite normal for cancer patients… well, as anywhere where the cells divide rapidly, the chemo works best and that unfortunately also applies to the oral mucosa, making it dry, sensitive and sore.

Today I meet Claudia – she is also with Dr. Rix and Prof. Dr. Breidenbach, so one more of the line of cancer patients, who Dr. Rix was shocked about and transferred this summer/autumn… She was diagnosed early October, is really nice, just a couple of years older than me, we have the same tumor and she also works for a travel agency ….. We talk about our tumors, negative people, positive attitude and our different ways of handling the situation and time really flies until she leaves. Thanks for the psycho oncologist recommendation – I am only allowed to see psycho oncologist Beate Rahn two more times and shall check, if Claudia’s lady has capacity and I need to check with my insurance company, if they pay for it.

I should rest, but I am restless… I call the insurance, the psycho oncologist and the podologist and have long chats with Maja, Anne, Simone and Conny – the voice is not back 100%, but I can talk again … whoohhooooo!

Being sentimental, I look a lot through old photographs and I am now Leo’s super hero of the day: I did a fire fighting course for the yachts ten years ago and showed him a photo, which was taken just after I led a team of three firefighters out of some burning containers having extinguished the fire successfully with an injured dummy rescued …. yeah, I am now officially cooler than Fireman Sam 🙂

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2007 – full of adrenaline just having left the burning containers …

22 November 2017

Lilli’s mom and my friend Nina got me into the Milky Chance concert, as her man Jojo, is doing the lights and – bless him – he even organized a chair for me next to his desk and water in case I needed a rest ❤ What a great evening with a nice bunch of people, nice music and excellent lights 😉

Tabea made us do circuit training today… phew… but now I feel fit for chemo! Also had another throat laser session and got some trial medication! Voice is getting back slowly.

I had a first nice chat with the coach today and we arranged a first meeting next week, booked into some nude art sessions next week and Sylvie said I could keep her e-piano … just need to make sure that I meditate daily now!

My mummy friends gave me another chemo present for tomorrow – a Mamamachine to replace my voice – I love it! hahaha… no need to talk anymore!

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21 November 2017

Doctor’s Day!! I see Prof. Dr. Breidenbach for my monthly check-up and the tumor shrank from 6mm to 4mm. That is great, but somehow I expected more, as after the three big chemo, it went from 2cm to 6mm and now I had another big one and two little ones…. well, at least it shrank!

Prof. Dr. Breidenbach has now decided that she needs to hollow out the breast during the operation and I will get a silicon implant. Unfortunately, she has to work on both breasts, as they are not the same otherwise. Never thought that I would have silicone breasts, but she said that it could later be fixed with a DIEP (deep inferior epigastric perforator, which runs through the abdomen) Flap, where they basically take your belly fat and muscles and put it into your breast. Hm… the belly is unfortunately one part of my body with little extra fat, but I shall see, if they can use my bum instead 😉 The good news is though that if they hollow out the breast, I might not have to undergo radiation!!! Fingers crossed!!!

The operation will be four to six weeks after chemo. Regarding my travel plans to Bali, I got the go to fly 14th February anyway! I will have to do some MRTs, CTs, etc. after the chemo and certainly do not want to leave before Karneval is over, but she promised to time all the checks and the operation to give me two weeks to recharge my batteries… yipehhh! She also said that after chemo I will be a different person than maybe in six months time and that I should look after myself.

The next subject was my throat. She thinks that it might be a fungus in my throat, which Frau Dietrich suggested already yesterday and sends me to an ENT doctor in the same clinic. Dr. Zenev checks it and lasers my throat. I have never heard of anything like that, but there are a lot of firsts for me lately anyway 😉 I shall have another laser session tomorrow!

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my tongue is all blue after seeing Dr. Zenev, but apparently that will go away 😉