Archive | April 2014

We have a game plan!

Long story short – all the recent MRI’s came back fine! The liver is good, the nodule in the breast was benign, and the right hip is good. Calls for celebration, doesn’t it?

Dr. Stones (oncology) office called and wanted to schedule me for an appointment with Dr. Stone. I got kind of excited, and at the same time I’m thinking “Holy Shit. This is it!” Time is ticking and I can’t stop it…

I took the first opening, on Thursday at 1 p.m. Brian couldn’t come with me, so I asked Aunt Gunilla be my secretary. She willingly accepted.

My name got called, and the nurse did the usual things…weight, length, blood pressure, temp and questions. Then Dr Stone comes in. She’s so calm and nice! She goes over the 5 MRI’s I have done and- the-Triple-Negative-HER 2 (overproducing protein) after that we get down to “A game plan”.

Dr. Stone asks me what my schedule is, and I say “Well…if I’m going to feel crummy for a few days, I want to feel crummy when my husband is home, and can take care of the dogs etc”. Dr Stone says okay. The game plan will be to come back on Wednesday, April 30th to put in a port. This port will be located around the collarbone area. The first day I will have keep the needle there, but it will be taped it down so it won’t hurt me during the rest of the day, and at night, plus they don’t have to ‘hurt’ me again the next day. After the first Chemo treatment, they will take it out. The port will stay there for 4 months …during the whole treatment time.  I guess you get used to it…

The first Chemotherapy treatment starts on Thursday May 1st! One month after I got diagnosed!  Dr. Stone tells me I will be treated with one kind of medication for 4 times, and then another medication for the last 4 treatments. I can’t, or will not,  say the names of the Chemo drugs, because I’m still getting used to what they are, and how to pronounce them…The side effects will be stronger with this first medication and less with the second one…On Friday May 2nd I will go back in for a shot of a drug, that will help my white blood cells return.

Dr. Stone also tells me about what to eat, and what not to eat. She said during Chemo your diet should be small meals. Every 2 – 3 hours. Eat carbs, bland food. No fresh fruit or veggies. Except for bananas and oranges. Fruit with a peel. Frozen fruit and veggies are okay. No raw food. Oral hygiene is important and to use Sensodyne, or Arm and Hammer as toothpaste. Again, something mild…So, my no carb, no dairy, lots of fresh greens and fruit – is out the window! Now I get to go back and indulge in carbs again!

First thing that came to my mind was COSTCO’s vanilla soft Ice cream, with warm strawberries topping! Yum! Funny how your mind can take to a place in NO time! I was right there at Costco… ordering an ice cream! *drooling*…

More to come…

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Last MRI…

I’m getting tired of writing about them…the MRI’s.  At the same time it’s good to keep a log (blog! Ha!) It’s on Tuesday April 22nd at 4 p.m.

Guess What? Radiation Department is running BEHIND! (Say it ain’t so!)  At least one hour (equals two hours…) All over sudden I saw I had missed a call from my Oncology Doctor. Since I’m at C.C, and they are running late, I walk up to her office to see if she can see me, but she’s with a new client (been there…) The front desk girl will give her my message. Dr. Stone calls me after a little bit, and tells me that my liver have an “enlarged duct” that both her and the Gastro Intestinal doctor are a little concerned about. She says “It’s not cancer, but it could be an infection. You have to see this GI Doc.” I ask what they might do?  She says “They might have to go down your throat, to the liver and take a peek”. My heart drops and I don’t want to “play” anymore…I don’t want any more interruptions. I don’t want any more MRI’s (for now), picking or poking. Please God – fix this!

And who gets to call my name at 5.30 p.m??? Oh yeah – MR SLOTH!!! What a wonderful world! He’s as friendly as ever… I don’t need an IV – yet. He says he will put it in, half way through.

Belly up, sleeping mask on, head set over my ears, and I ask him to crank up the music! He does! The best MIR ever! Even tough, half way through, he needs to put in an IV and he’s shaking.He pokes me twice, cause he can’t find a vein…It’s all good!

After wards I say “I don’t ever want to see you again”. He says “I hear that all the time”. I say “Well, I’m sure I will be seeing you…” He says “See you at Publix!”

I say “See you at Publix!”

 

Monday April 21st…

8 a.m. appointment – On time! The nurse, who calls my name, is yet another very nice and sweet person, but OH! SO SLOW…I have seen her before. I learn her name is Lori.  She tells me she recently had a knee operation, so she’s limping…She looks a little scattered…Her glasses are a little crocked, she’s a little pale, her hair standing on end…and limping…I feel a little sorry for her…Maybe I shouldn’t… She gets my warm blanket. Yum!  Very strange, but I can’t remember if I got on IV or not?

I’m thinking I’m kind of getting used to MRI’s…Belly up or Belly down…Belly down I don’t need a Sleeping Mask. Belly Up, I want a sleeping mask. Today is a ‘special’ MRI of the breast, with a needle biopsy in the middle of the treatment. I’m ready, or so I think!

I lie down on my stomach, the head-rest is kind of like the one on a massage table, but not as comfortable. I think it’s old, and the “puffiness”, of the U-shaped pillow, is gone. It’s more like digging your forehead into the plastic frame.  You have indentations after 30 minutes resting on that piece…and your face is red! Charming!

The tech is now going to (and it takes me by surprise) squeeze my right breast that’s “hanging” (not much to hang…but anyway) down into the hole in the bed. Like at a Mammogram. But, No! Wait! Squeeze it tighter and tighter for ONE FULL HOUR! She tightens it and I say “It hurts!” She’s apologizing saying it needs to be very tight…then she’s releases “it” because she didn’t get the bottom…I’m ready to jump up and sprint away!  But, she’s quicker and tightens it again, and a little more tight…My poor boob is pressed into a pancake! Holy Shit!

She says “A lot of people say they don’t feel their breast after a while, so just try to relax…and it will soon be over…” It’s actually true…the pain is so awful you get numb! My arms are above my head, and they soon fall asleep…I don’t know what’s worse? I have the panic button in my hand, but even if I pressed it, I’m still stuck with my right boob…and then I have to do it all over again. The panic button is no option.

After about 30 minutes the Doctor comes in. I’m trying to move my squashed face into a better position, but the Tech puts her hands over mine and says “Don’t move, don’t move… It’s very important you lie still…” The Doctors tells me what he’s doing…Numbing-needle-biopsy-marker…and then back in the tube again for another 20 minutes or so. When I’m done I can’t wait for them to release the pressure…and strangely enough it’s not a pancake hanging there.

Time to cry and release my feelings!

Much Love,

Filippa

This entry was posted on April 24, 2014. 3 Comments

A not so Good Friday…

I’m not complaining, but it’s the first time I have an MRI scheduled on Good Friday at 6 p.m.! Yes, 6 p.m.!

Get there (on time) at the requested check in time 5.30 p.m. The Registration Desk at Cleveland Clinic is closed.  I go straight to Radiology to check in. I have to read, and sign, all those papers (again) with tons of questions, yes and no answers…Why can’t they keep a record of my previous answers? Or just ask “Did anything change since yesterday?” Duh!

The waiting room is pretty full…even at this hour.  I start reading my book “Love, Eat Pray”.  Then I see from the corner of my eye a man walking up to the desk with determination in his step, and a stern face. I’m thinking “Oh, interesting…let’s listen in…” He says with a low and very angry voice to the front desk girl “My wife has been waiting here for 2 hours and I want to know what the %*&#%* is going on…I see other people being called ahead of my wife, and if she doesn’t get in soon I’m going to *$&%*^*”

First my heart dropped, and I was  selfishly thinking “Shit! I have to wait 2 hours before I can get in!!! Darn!” Then I hear the front desk say they got delayed because of an Emergency. She’s very calm and sorry about the delay. She will call radiology and see what the time delay is exactly… The angry man does not want to hear about any Emergency, or any other “crap”…He walks out in the hallway and comes back again…His voice is louder this time…the front desk girl is still calm (I really admire her!), he walks out again and comes back a third time and “vomits” over the front desk girl again! She’s still calm and collected. Wondering if she’s got an Xanax IV directly into her arm, or something?  I’m ready to stand up and defend her…but she doesn’t need me!

I’m wondering where the wife is? Is he really speaking on behalf of his wife, or is he just tired of waiting? Maybe he’s afraid? I’m making up a story that his wife is everything he’s got…She has done everything for him for many, many years, and now he’s afraid of loosing her? He never paid any attention to her, but now when he’s about to lose her…He’s so scared. Sounds good. This is my story, and I’m sticking to it. I forgive his behavior, and sends him love instead!

I’m not upset about the wait anymore, I’m just hoping the person who got everything delayed…”the Emergency” is okay?!?! Sending a healing thought to that person too…whomever he, she is.

My name is called after about one hour (Yay! Not 2 hours! And God Bless the emergency person!) The MRI technician takes me to the X-ray room and says he’s going to prep me. Then we’re going to a “barrack” on the outside of C.C ., to do the MRI. Hm! Interesting! They guy is very nice, but soooo slow…Slow like a Sloth!

It takes forever for him to gather the IV kit, the gauze, the sterile pads, to get me a warm blanket (that’s the first thing I want now! It’s sooo cold in there, and the warm blanket is a “must have”) By now I think the time is 8.30 p.m.

He looks for a vein to insert the IV, and can’t find one…so he turns the hand over, and decides to put it on top of my hand. Then – I see how much he’s shaking. I mean shaking like you have Parkinson’s. I look away,  because I don’t want to see the disaster…He tells me “Here comes the little pinch (OK. Got it! Felt it. Not too bad) …and now I’m injecting the saline”.  Now I can look. I can tell he’s struggling a little bit from shaking.  I ask if I can help him hold the IV, so he can put the tape on the syringe and tube? He says “yes”. We’re working together…Luckily I’m not squeamish…

Out to the Barracks! It’s a portable MRI barrack. He opens the door and it’s even colder in there! Then I see the TUBE! My first thought was “I’m not going in there!” It’s a tiny tube, and I have to lie on my back! And it’s freaking cold…I’m going to shake like a popping popcorn…but frozen!

I said “I need something calming. I’m a little freaked out over this tube”.  He said “I’ll give you a sleeping mask, how’s that?” At this point I’m thinking “What are my options? Not do it? Na! This sleeping mask might be okay…cause if I don’t see the tube that are 2 inches from my face, then I can pretend it’s not there!” He also tells me he will give me instructions during the MRI, which means I will be active. That helps.

Here we go! In the tube…and Mr. Sloth takes his time getting the MRI going…I decide I have to think about something that I have mastered,  that took a long time,  and was grueling. Marathon training!!! That’s it!!!

Talking to myself  “Alarm goes off at 3.30 a.m. Who’s going to text first to see if we’re all up? Pling! Ah! Yvette is up. And here’s Sharon – she’s up…and I’m up! Getting dressed, put on a lot of Glide, Water bottles (check) GU energy packs (check) money for more water at the gas station (check). It’s dark outside and we start running…”HOLD YOUR BREATH”. Shit! He scared me!…the MRI tech! Holding my breath for 20 seconds. Done. ”“So, we start jogging down 59th Ave towards Peter’s Road. Yvette and Sharon and I…Only got 22 miles today…HOLD YOUR BREATH”, ‘The Sloth’ Tech is talking again…and so it goes for 22 miles…

Two more MRI’s to go!

Much Love,

Filippa

 

Life is like a Washing Machine…

Early this morning I was thinking about how we human beings function (in a kind-a fun way!) How we deal with different situations…and what (strangely) came to mind was that we’re all like a washing machine.

Think about it; (and you can add what you want)…Before you start a wash…you pick out the clothes (let’s say they symbolize different feelings and emotions) you sort them according to colors. Colors in one pile, and whites in one.  Now you pick the pile you want to wash first. Just like you deal with feelings and emotions for this day…You’re ready to deal with the not so “colored emotions”, so you throw in the white clothes. Maybe you’ll add an extra rinse today?

Delicates? Oh no! Too difficult…those we deal with later.

The whites are in the washing machine and you add detergent to clean your clothes…just like you add some cleansing thoughts to today’s schedule. Time to start the washing machine (today’s tasks)…Turn the knob to your preference…Cold water (in denial) warm water (open for a chat) or hot water (I’m ready!) Then the water start pouring into the machine…and then “wooshwooshowoosh” the clothes are chugging along in the water and detergent. Just like your day…Chugging along…

Just like in life…You add what you can handle…sometimes less, sometimes more…

Wash is done! The spin cycle did a great job. The clothes are very dry… (How do you feel? Wrung out and ready to be fluffed up?). You start pulling out one piece (a feeling/emotion) after another…and it’s up to you if it goes into the dryer, or to be hung on a hanger? What can the “clothes” handle? (Wanna talk? Share?) Does it need to be ironed (more “stuff” to deal with)…Maybe you should have gone to the Dry Cleaner (your shrink) right away…??? Pewh!

Just a thought, 5 a.m. in the morning.

Much Love,

Filippa

This entry was posted on April 16, 2014. 3 Comments

Burping Wheatgrass…

I changed my diet!

I changed my diet in order to built up my immune system as much as possible, and to make my body as alkaline as possible. Cancer cells cannot live in an alkaline body…So, I’m slowly strangling  those motherfuckers (and I’m so sorry for using this word, but I just had too! It’s not really in my dictionary to use it…but in this case – it’s war)!

I reached out to a Swedish Raw Food Expert. Her name is Asa Paul-Johansson. She owns a company called “On the Lime” (very catchy name I must say!)  A few years ago I took her basic course. It was 4 classes, and she made Almond Milk, Granola, Chive-Dill Spread, Mango Kale Smoothie, Kale Chips and a few other things.  We got to taste it and it was yummy! I really loved it! But also felt like “this is a whole science”…kind of. Asa and I talked last week. She told me what to think of, what supplements to add and so forth…

To sum it up: 

Avoid – Sugar of all kinds.  Add – chlorophyll ( if you see me in the back yard grazing…don’t be alarmed. No need to call 911) like wheatgrass, sprouts, shoots, herbs, leafy greens. Oxygen (I’m breating) – Easy to add! Vitamin C (check) – in large doses…like Camu Camu or Amla berries, Vitamin D – from sun rays collected on my bare skin (OK neighbors…Watch out! Again- don’t be scared…it’s only me!), Aloe Vera Juice (check) – not processed, heated or diluted. Mung Beans (check) – growing in my kitchen (not too successful tough…The little tail is not growing out…Darn…Just read that I have to soak them over night…), Chaga and Reishi (check) – Ever heard of Chaga or Reishi? Me neither…but it’s a mushroom (not that kind…) They come in freeze-dried capsules, Artemisini (not check) It’s a wormwood plant. Have to order it. Miracle Fruit (ordered) this little red fruit from West Africa appears to replace the metallic, chemical taste after Chemo, with a sweeter flavor that allows you to eat again. Also counter acting the nausea after Chemo. Alkalinity (kind of check) – To create an alkaline body where cancer cells cannot live;  Avoid cooked foods, fruits, meat, grain, coffee, soda tea etc (etc? etc??? What is there to add to that list of “no-no’s” ?  There goes my food groups!) Hope (check) – Get my mind-set on the right attitude. Hope is the best ally (Thank You Asa!)

Alright – I really want to be the best and healthiest I can be before going into treatment, to stop feeding the cancer cells, that right now are multiplying! I started juicing in the morning. Quit drinking alcohol (for now ;o), eating lots of greens, no meat…and wheatgrass…Yeah, that lovely, green, bitter things of GRASS…Shoving it into my 20-year-old juicer, and the juicer goes “Weeeeeeeeeee” and out comes a puff of smoke from the tired motor! Plus, a bunch of wheatgrass only produces a “tiny-eny” bit…like 1 ounce. But it’s sooo healthy! So I do it!

Then…an hour later…or so – Burp! Wheatgrass burp! Oh how nasty! Not to gross you out, but imagine an “egg burp” (boiled egg…)…Aha! Not that I want to take you down “sensory lane” but a wheatgrass burp is as delicious as an egg burp!

To you health!

Much Love,

Filippa

 

 

This entry was posted on April 14, 2014. 1 Comment

Friday Test Results!

I’m prepared! 

Or so I think…I don’t think you’re ever really prepared for doomsday…so to speak! My appointment is 8.30 a.m. which is good. My brain doesn’t have time to run mayhem at this hour, and I put duct tape over the mouth of Mr. Ego on my right shoulder, and Ms. Victim on my left! Shut up both of you…Now it’s time for Filippa!

Brian comes with me to all Doctors appointments which is great! He’s calm and collected…at least when he’s with me…cause I’m a little edgy, nervous but also focused. I’m really prepared (!) Ha!

We’re a little late not because of me, but Brian, who’s always last minute (Sorry Brian) I feel a little pissed that we’re not leaving EXACTLY at 8 a.m. (we left at 8.02 a.m…………..*I know*). Of course we hit traffic Schools Zones and we have to crawl through these sections. Darn kids! (Not really! But my mind is in “cancer land”)  I tell Brian “I don’t want to be late for the Doctor’s appointment!” He says “Since when have a Doctor been on time for an appointment?” Might be true…but I have always respected my appointments. No matter what it is. I respect that persons time, and I want to be treated the same way. At least I’m keeping the promise from my side, and that makes me feel good.

My name gets called and we’re heading towards “dooms day” room. Not really ‘dooms day’…I know it’s cancer. Now I just need to find out what kind, and a game plan. She starts by saying the good results; my perfect blood pressure (woohoo), Hormone levels -OK (Score!)…then she starts to speak Chinese! What? EST, ER NEG, HER2 TRIPLE NEG and 2 more MRIs is needed. Wait! Hold on! Repeat and repeat again so I understand. My “secretary” is taking notes, thank God!

Diagnosis in my words – the first MRI showed a nodule in my R breast at 6 o’clock. Just to be on the safe side they want to do an aspiration (biopsy) during an MRI (noise %#%$*), then the bone density showed something in my right hip (most likely pre-arthritis) but to be on the safe side, the Doctor (s) recommend another MRI…and they can’t combine the 2 MRI’s. It has to be two separate MRI’s. Suck it up Filippa! If this what it takes…

The name of the cancer is: Triple Negative – HER2. If you google it on the internet I’m probably already dead! So, please go to http://www.americancancersociety.org. Or http://www.breatcancersociety.org. Those are two reliably sites to check out.  This type of cancer responds best with Chemo Therapy. Plus, my lymph nodes are enlarged they need to shrink before the surgery…

Game Plan: Chemo Therapy, every other week, for 4 months. Then surgery. Then Radiation. Chemo starting (hopefully) the week after Easter. Not sure how long it will be between Chemo and surgery, and between Surgery and Radiation…RIGHT NOW – it doesn’t matter. One step at a time!

Much Love,

Filippa

 

 

 

 

 

This entry was posted on April 13, 2014. 4 Comments