Crazy Month

I just looked at my blog and saw that my last post was on August 3rd.  So much has happened since then it feels like ages.

Edited:  I just finished this post and it is REALLY LONG!  Don’t say I didn’t warn you 🙂

So I had outlined a bunch of things that were going to happen that Friday, August 4th.   I did most of them.

  1.  Punch Biopsy of lump next to where my previous surgery was.  My surgeon couldn’t get the punch biopsier thingy to do what he wanted so he ended up doing a lumpectomy.   He had just given me a local anesthetic but it didn’t hurt much, just mostly tugging.  I didn’t know he was doing a lumpectomy until I saw the specimen jar that he passed over me to the nurse.  Instead of being a small circular specimen, smaller than a pencil eraser, it looked more like a mini marshmallow.  I wish I had had my camera because it was kind of cool.
    1. Results:  another local recurrence of breast cancer.  la di da.
  2. Chest Xray – well it turns out that I had 1.5 litres of fluid in my pleural lining.  I know this because at the end of my transfusion, I wasn’t able to breathe.  All the blood that was infused into me combined with the fluid in my pleural lining and created a huge pressure on my chest and I couldn’t breathe.  (O2 sat = 80%).  So I ended up getting admitted to Norris for the weekend and the next day had a thoracentesis.
    1. Result:  Pathology report comes back with the pleural fluid malignant.  My breast cancer has metasticized into malignant pleural effusion.  Stage 4.  SO FUN!
    2. Freak out a bit.  Talk to my oncologist who tells me it’s not a 4 month prognosis if we can keep the fluid under control.   So I probably need a pleuradesis which requires a 7 day inpatient stay.  (LIES!  It was a 13 day inpatient stay)
  3. I didn’t get the Eligard, Faslodex and Amacor.  It was already a crazy day.

 

I got out of the hospital on Sunday, August 7th and on Monday the 8th, I started having the shortness of breath again. I had another chest xray on Tuesday that showed that my pleural lining had already filled up again and got signed up for ANOTHER thoracentesis that Thursday, the 11th.

Let me tell you, thorcentesis SUCKS!  You are sitting up with your legs hanging over the side of an ultrasound bed with your arms and head on a pillow that is at a comfortable height on a table.  So the position isn’t uncomfortable.   Then the radiologist does an ultrasound on your back to find the area with the biggest amount of fluid.  Once they find that spot, they sharpie it.  Then they inject you with lidocaine (this SUCKS and HURTS!).  After you are numbed up, they stick a needle into your back, through your chest wall and into the pleural space.  Then they retract the needle, which leaves a catheter and stick the free end of the catheter into a vacuumed 1 ltr bottle.  Then the fluid gets sucked out of you.  It takes about 5 minutes for 1.5 litre and they stop when you start coughing your lungs out.   They remove the catheter then slap a big bandage on it and off you go.

That Thursday, my friend Amy (who sat with me and ordered people around all day when I was having multiple panic attacks) and I mosied on to Norris.  On that day, I did this:

  1. Radiation
  2. 1 unit of platelets
    1. This is where I had anxiety attack number 1.  I hate getting platelets and have to have tons of premeds in order to not have bad reactions.  Unfortunately, I have bad reacations to the pre-meds (IV Hydrocortisone specifically)
  3. 1 hour of Amicar (platelet medicine)
  4. Eligard shot (monthly to shut down my hormones)
  5. Thoracentesis
    1. This was where I had anxiety attack number 2.  Full on breakdown.   Panic Attack brought on by a reaction to the hydrocortisone.  I couldn’t stop shaking and crying.  I felt totally crazy.  The radiologist said he couldn’t do the procedure if I didn’t calm down.  So I just steadied myself and they started the procedure.  Unfortunately the place they had to insert the needle was just next to where they had gone in 6 days prior.  So that felt lovely.  They took out 1.4 ltrs but had to stop because I started coughing and then dry heaving which kicked off anxiety attack number 3.  They patched me up and then Amy commandeered a wheelchair and a transport person and we went back to the day hospital where I had to get
  6. 1 more hour of Amicar
  7. My two faslodex shots.
    1. These are intramuscular shots – 1 in each hip.  By this time I was a freaking mess and didn’t think I could do it but I sucked it up.  They stung like bitches but it was all over.  And afterwards, Amy and I ended up at a Red Robins in West Covina and had the best freaking hamburgers on the planet.

 

By Sunday, I was short of breath again.  On Monday the 15th, I had another chest xray that showed I was full up of fluid again.   I had an appointment with my oncologist and she said that it was advisable to try a procedure called pleurodesis.   I would be inpatient for about 7 days (LIES!) and the procedure wouldn’t be painful just a lot of uncomfortable pressure (MORE LIES!).  The procedure wouldn’t  cure my pleural lining cancer but it would make it so that I wouldn’t have to get my pleural lining drained ever again.

First they put in a pigtail cathether.  The person scans for a good placement using a ct scanner.  Once they find a good spot, they inject you with shit tons of lidocaine (PAIN!).  Once you are numbed up, they make a little incision and start weaving a long needle into your pleural lining. This is the part that is only supposed to be pressured but it hurts LIKE A BITCH!!!!!  Once they get the needle in, they start inserting these expander things in so that your pleural lining opens up to the size of the catheter.  This sucks.  I was basically screaming.  Pressure my ASS!   Then they run the catheter up and remove the expanders and needle.  Once they do this, 90% of the pain goes away immediately.   Then they slap a bandage over the tube coming out your back and hook the catheter up to a bag.  When they hooked me up to a bag, they anticipated moving me up to my room, but the bag filled up so quickly, they had to drain it.  (600 ml)  Then the bag started filling up again and I told them to wait and they freaked because the bag started filling up again super fast.  Then I had another panic attack because the fluid was leaving my body so fast that my lungs couldn’t expand fast enough and I couldn’t breathe.  So they had to mainipulate the bag so that it would fill up and nothing would drain so that my lungs could catch up.  So they spent about 10 minutes letting the bad fill up, then drain a bit, fill up, drain a bit,… until I was breathing easier.   All in all, they drained 1.3 ltrs from me in the fifteen minutes post placement.

Best part of this procedure:  You absolutely cannot get the bandage wet.  So no showers for me for over a week.  My hair was SO DISGUSTING.  I was able to do sponge bath stuff but still…blech.

They gave me pain meds that night but the next morning I woke up with pleurisy pain on my left side.  I was in so much pain that I was basically on dilaudid  for two days.  I hardly remember anything.  My mom brought me a care package that had been sent to the house and when I tried to email a thank you, I couldn’t remember what to type or what words were.  It was so bizarre.   So to explain why I didn’t post much or send thank yous for the cards, care packages, etc…  it was because I couldn’t put two words together.  I couldn’t even keep a conversation.  If I wasn’t in so much pain it would have been sort of hilarious.

The next few days, they do a chest xray every day and monitor the fluid output.  My output went to 20ml/day in a few days.  So they did the pleurodesis.   They shot me up with dilauded and then the thoracic surgeons shot medical grade talc into my catheter.  The purpose of this is to irritate the pleural lining so much that it gets inflamed and the lungs and lining stick together, therefore removing the space where fluid could build up.  It’s purpose is to avoid having to have thoracentesis all the time.   After they inject the talc, you have to lie on your back, then right side, then stomach, then left side, each for 1/2 hour so the talc spreads around.  I didn’t care because I was still out of it from the dilauded.

Starting around this day, I was so tired from the pain that I was basically in panic attack mode 24/7.  They kept me hopped up on anxiety and pain meds.  Oh, and I had sprung a slight fever so they went to the protocol for aplastic anemia and I was put on two IV antibiotics every 6 hours.

After a few days of no fluid drainage, they came and gave me more dilauded, and pulled the catheter out of my back.  That was Wednesday and I had no draining or fluid build up (chest xrays every day) so on Saturday I got to come home.

Somewhere in there I got a platelet transfusion and a few units of blood.

So now I am resting and recovering from the hospital stay.  My lower lungs still aren’t totally back to normal so I get short of breath easily.  My back where the catheter was still hurts.   Usually after a hospital stay, I feel fantastic.  This was the worst I’ve felt ever.  Worse than the mastectomy.  I still feel like crap but at least I can breathe!!!!   It’s going to take a while to get back to normal.

Tomorrow:   Radiation (#17), Rad-Oncologist appt, possible Amicar infusion and faslodex shots.

Finally, a normal day!!!!

Fight On!

 

 

 


Pam vs the Machine

MRI day today.

I’m terrified of enclosed spaces.  I get anxiety attacks just walking back to the MRI room, let alone actually laying down and completing one.   I was able to do a Breast MRI in 2013 because you lay on your stomach and you just see the bottom of the machine which was okay.  There was some crying and panicking that day but I got through it.

Since then it’s been a different story.  I go into the MRI room thinking that this is the time and I’m going to make it.  Then my brain turns on me and I start thinking that I’m being crushed by the machine and then I’m done for the day.   The last time I tried, I was all psyched up and laying on the thing ready to do it when they started layering all kinds of crap on top of me.  That flipped me out because I felt like I was being crushed.

The deal with today’s MRI is that it wasn’t an option.  I had to get it done.  The alternative to the MRI was a CT Scan – which is much easier but I’m very allergic to the contrast media.   There is one tumor on my side that will be easy to “pop out.”     There is a second tumor up in my pectoral area that has grown into a vein and has capillaries that have grown all around it.  So the MRI is needed so that the doctors could figure out which things they could cut without cutting off my circulation.

I polled all my friends and a ton of them get full on sedated (like anesthesiologist in the room).  Some of my friends said that Ativan (which I take) and a wash cloth over my eyes would get me through it.

And it did!   I did go into a few minor panic attacks which I was able to contain.  Then they put things over my shoulder and chest.  I did not like that as it felt like my chest was being compressed but then I realized that I was able to breathe and I stopped freaking out.

So, I conquered the machine!!!!   Not that I would volunteer for more, but now I know what I need to do to get through it.  Wahooo!

The only negative thing was that they had trouble getting my IV in and had to put a super tight tourniquet on my arm.  If you want to know what it looks like when you keep a super tight tourniquet on an arm of a person that is low on platelets, I took a picture!

 

20160512_145441

The white area at top is where the tourniquet was and the dark red area goes all the way down to my hand.  It’s called petichia – basically little blood dots.  My arm is swollen a little but it looks worse than it feels.

Oh,  Songs sung (in my head) during the MRI:

  1.  99 bottles of beer on the wall (only got to 85 before I was bored)
  2. USC Fight Song
  3. Conquest
  4. The two lines of Katy Perry’s “Roar” that I know.
  5. Excerpts of “The Book of Mormon”

So while the PET scan is dedicated to “The Nightmare before Christmas”; the MRI scan is more of a musical revue!

Not sure this is public but my surgery date got moved to Tuesday, May 24th.

OK…going to go take a nap since I had to get up at 4am to get there in time.

Transfusion and appointment with Surgeon 2 tomorrow!

Fight On!

 

 

 

 

 

 

 

 


It’s Tuesday so that must mean changes

It’s such a Tuesday.  It’s SO SUCH a Tuesday that Monday wishes it could be today.

This morning, at butt o’clock am, I went to the Keck Hospital pre-op clinic (aka, START).  Everything went fine.  I learned that my surgery is currently scheduled for 9:30am next Tuesday.  They they wanted to take labs – a CBC, CMP, PTT/PT and Type & Screen.  So I’m like, No.

I get all of those labs drawn tomorrow at Norris for this weeks transfusion.  No need to draw them at Keck when they aren’t used to seeing the numbers presented.  It’s all perspective and they would freak out.  Then I saw the anesthesiologist consult, Chest Xray then I’m out.

Sort of.  In the middle of START, my surgeon called. As I mentioned last night, the ultrasound may not have given her the specific information needed to ensure that the circulation to my arm isn’t cut off.  Well, the ultrasound isn’t good enough.  So now I’m in the process of being scheduled for an MRA.  This is a superspecial MRI that takes the place of an angiogram.  The little bastard tumor that showed up in the PET scan is apparently caged into a vein, that vein has grown little veins and the MRA is being used to determine how to cut out the bastard and keep my arm circulating at the same time.

This sounds like the perfect test to do in light of the situation.  But of course, it wouldn’t be me if there wasn’t a problem.

I go into full blown panic attacks just entering the MRI room. Stop breathing, scream like a crazy person, panic attacks.

In order to get the cancer out, I have to do this scan. I have everyone telling me how they do it and I’ve gotten a lot of good tips.  The one I want is to be completely sedated but I looked at the drugs used for that and I’m not sure that I want to be sedated like that and then go through it again in a few more days.  So I’ve started taking Ativan (like an hour ago).  I will be taking Ativan all day every day until after the scan.

Now I just need a scan date.  It has to be either Thursday or Friday morning.

In addition to the scan, I had to schedule two more doctor appointments.  One for my hematologist tomorrow so that we can talk about a pre/post surgery transfusion plan.  Then Friday, I see Surgeon #2 so he can examine me pre-surgery.  Apparently, he is doing the crazy veiny tumor at the top of my side and Surgeon #1 is doing the tumor a few inches down.

Unless there is an issue with the scan (the issue being ME), I’m still at surgery on Tuesday.

Tomorrow, I see Surgeon #1, my Hematologist and get labs done.  Anything could change.

I really need cake for dinner.

pusheencake

Fight On!

 

 

 

 

 

 

 

 

 


Good news but not good enough

I went today for my lab appointment and oncology visit.

Nothing new with oncology.  She’s happy with test results that show nothing.  Yay!  My mastectomy side and arm have been bothering me for the last few months so she felt it and said “yes, it’s lymphedema, it’s forever, just get used to it.”  Great.  My upper arm has been itching today – but the nerves are all gone so when I scratch I can’t feel it.  It’s frustrating.  I’ll get used to it.

My lab results were good but not good enough to come out of isolation and go out to eat.

(although I cheated today and got brandon’s diner…mom & I were starving after being at the hospital all morning)

My blood count was 9.9 – so normally that means no transfusion but I’m not feeling a 9.9.  So I am going back on Friday, super early morning, and getting another lab count done.  If it is lower than 9.9, I’ll get one or two units.  Luckily I have nurses that know me and have ordered two units just in case so I don’t have to wait a day before the blood can be ready.  If I don’t need it, it will just go back to the general blood supply.  I’m starting to get a low fever, my pulse is a little elevated and when I do my blood sugar tests, the blood looks like fruit punch instead of reddish/black.  So I’m thinking I’m getting blood.

I also get my “suck the hormones out of me” shot – so I’m looking forward to another week of hot flashes and night sweats. SUCK!

What we are hoping for is that my ANC (the engine of my white cells) would be at 0.1 or higher.  That’s sort of the lowest it should be to hang out with people.  It was only 0.6 – so I’ve got 2 weeks more of kicking it at home and eating my restricted diet.  I have gone down some more lbs (lowest weight since Fall of 1992!) so perhaps this will get rid of a few more!  I’m getting lots of reading and coloring done.

I started back on one of my new medications last week (the one that gets rid of extra iron in my system).  It has the side effects of a) liver damage and b) bone marrow suppression.  My liver enzymes have almost tripled since I started taking the medicine and the doctors think that it might also be the reason that my ANC didn’t come up higher.

So I’m back OFF the medicine.   The other new med (the overdose med) is completely off the table until future  notice while we work on getting my ANC back up.  Good news is that it is moving in the proper direction, just not fast enough.

It was National Dog Day today (or yesterday as it is now 12:20am).  My favorite therapy dog, Chanel, was at the hospital:

img_20150826_104035_20281064754_o


2nd Cancerversary

2cancerversary

Before you go any further, this ended up being a seriously long and somewhat whiney post!

Yep.  It’s my cancerversary.

Cancer folks have all sorts of ways of figuring out this date:  date of last treatment, date of first treatment, date of surgery, etc…   I decided that it was the date I was formally diagnosed.  The day I met with my doctors and heard the news out loud and in person.

August 21, 2013.

It’s a strange day.  I’m happy because it means I’m still here.  Prior to getting cancer I always thought that it would be the worst thing to happen because I didn’t think there was any real treatment options available to me and that I would probably die quickly.  On the other hand, it kind of sucks because, you know…cancer.

Fuck Cancer.

I don’t consider myself a survivor.  The medications I’m on continue to make me feel like crap and I still don’t have full movement or feeling in my left arm/side.  Every new pain brings about a bit of a panic attack – is it back?  You can’t rest easy ever and there’s enough physical side effects that you can’t forget about it.  I try not to dwell but everytime I get comfortable, something stupid happens.  So I consider myself a warrior. I may not have cancer in my system right now but it has certainly marked me.

FYI: Breast cancer is NOT cute and pink.

As far as I know, I’m cancer free.  I see my oncologist next week to go over some test results.  I have a scan and visit with my surgeon in early October.  Usual yearly stuff.  Although this is the first year for scanxiety.  Last two years I knew I had cancer when I did my tests – this year, I’m hoping that I don’t have cancer again.  I don’t think so.  Staying positive.

Everyone is still really happy with how the surgery went and my recovery.  I swear by my doctors so if anyone needs a Los Angeles recommendation, get in touch with me.  I started my post-surgery medicine about 5 months ago.  I get a shot once a month of Eligard – this puts me into medical menopause.  After the first month of that I started on an AI :  Exemestane.  This stuff shuts down all the extra estrogen – the kind that keeps your bones and muscles strong.  California summers are NO FUN combined with hot flashes.

So the cancer is stable as far as I know.  With the heat my arm and side are a little puffy and sore which contributes to the increase in whining.

Plus its F-ING hot here in So Cal!!!  I hate it here.  I could totally do Alaska 9 months a year and come back to So Cal for January through March.  Although I would miss my family and friends.  And Taco Tuesdays.

The most recent thing I’m dealing with is a hospital stay all of last week (Sunday 8/9, late in the evening through Friday, 8/14 in the morning).

It started on Sunday 7/19.  I started two new medications; both were liquids that I had previously taken but the companies had made these medications into tablets.  Much easier to take.  I started them both on that Sunday but by that Wednesday I felt like hell and had a low grade fever.  I called my doctor and they prescribed some antibiotics to try to get rid of the fever and keep whatever thing I had from getting worse.  The following Monday (27th), I was feeling worse, still had a low grade fever and had gained 10lbs (in 8 days!).  I happened to have an appointment with my endocrinologist and she looked at my swollen stomach and immediately detected that my gut bacteria was all out of whack and it was probably the antibiotic.

I don’t know why I thought of it but one of the new medicines was an anti-fungal to keep all the bad bacteria from growing in my lungs (it’s usual for someone with my anemia to take these drugs to make up for the fact that our immune systems are super bad).  Anyway, after some research, it turns out that the dose for this drug on the first day you take it is 600mg for both the tablet and liquid; BUT the dose for day 2 through x is 300mg for the tablet and 600mg for the liquid.   I was prescribed 600mg for every day with the tablet.  My side effects were listed in the overdose side effects list.  Both my doctor and the pharmacy missed the dosage change.  Luckily I have an excellent doctor who knows I research the shit out of things so she took me completely off the drug as soon as I emailed her. (That was monday the 27th)

It had done a number on me already and on Weds the 29th, I went in for my labs and my hemoglobin had nosedived to 5.5 which is a scary low.  Like, don’t get out of bed or get stressed or you could have a heart attack/stroke level.  So I was scheduled for 4 units of blood (two on Thursday, two on Friday).  My blood pressure was super high, but my fever went away after the first day of blood.  I did ask to have another lab test done the following wednesday (5th) to make sure that my counts were okay.

I didn’t bounce back from the transfusion like normal but I felt a little better.  By end of the weekend my fever had come back.  On Wednesday the 5th, I got my labs done and my blood counts were ok but my potassium was super low.  Back I went to the hospital on Thursday the 6th for a 4 hour infusion of potassium.

BTW:  do you know that potassium hurts while it goes in?  Like someone is slicing through your veins with a fire hot razor.  I had a major panic attack so they gave me some ativan and put more saline in the potassium so that I could stand it.

I started to feel better again but the next day I went to lunch with some friends that my mom used to work with and I started to not feel well (like when the flu is coming on).  The next day (Saturday the 8th), I woke up with a super sore throat, swollen painful glands and a low grade fever.  I stayed in, hoping that it would go away but the next day I woke up feeling worse.  My fever got too high (102.6) and, after talking to the doc on call, away we went (Thank you Joyce for driving to/from and keeping my mom company!) to Norris for me to be admitted.

View of my floor

View of my floor while on a walk.

I stayed from Sunday night through Friday morning.  I had a fever that didn’t go away until late Tuesday.  I got a chest xray, cat scan of neck/chest, doses of super antibiotics every 8 hours, and three units of blood.  My blood pressure averaged 180/88 so I was put on an ACE inhibitor and some other heart medicine.  I was also started on an anti-viral medicine.   Now I have a few more pills in my at home drugstore!  My fever stayed down.

Another thing happened while I was there.  With Aplastic Anemia, you don’t make white cells.  This is a huge problem because, well, you need those to fight off any infections.  There are two lab results that we are concerned with:

WBC:  Actual White Blood cell count  (Normal is 4.5 – 10k)

ANC:  Neutrophil count (Neutrophils make WBCs work)  (Normal is 1 – 1.8)

My counts are usually severely low.  My WBC is usually between 0.8 – 1k.  My ANC is usually 0.1 to 0.3.  On my Sunday night admission blood test, my WBC had plummeted to 0.34 and my ANC was 0.00.  Basically, I had no working white cells in my system.  So everyone had to wear masks in my room and I had to go on a low-microbial diet.   When I was discharged on Friday, my WBC had risen to 0.5 but my ANC was only 0.02.

Circus Monkey always comes to the hospital with me.

Circus Monkey always comes to the hospital with me.

So, I really shouldn’t have been discharged but it’s a fine line between risking infection at home and staying in the hospital too long and picking something up there.  So my discharge instructions are basically:  don’t go anywhere, don’t have any visitors and don’t eat anything not made in your house.

I’m doing ok with this.  I did go to Target to pick up a few things but I wore a mask and gloves.   My daily getting out of the house is driving through Del Taco for an iced tea.  I’ve lost all the weight gain plus 5 more lbs.  I’m going crazy!!!

No fever though – so YAY!  Gigantic headache.

I get my labs done next Wednesday the 26th and hopefully I’ll be cleared to go out more.  Eating out at restaurants or food made by other people is probably out for a while.  I had to cancel plans with a friend today and another friend is in town from out of country and I can’t see her. Luckily I saw her a month ago.  Totally bummed.  I also missed my friend’s birthday.  The hardest part of all of this is all the plans I make have to be pencilled in.  I feel like I”m constantly disappointing people. SUCK!

There is a ton more to say, including a funny story about a urinalysis, but this is already way too long.  If you’ve gotten this far, thanks!!!   Thank you everyone for your understanding and constant support!!!  I couldn’t do this without you!!!

FIGHT ON!


New surgery deets!

I spent most of today at USC.

First up was my cardiac clearance appointment with my cardiologist. They gave me an EKG and it turned out fine so my cardiologist said I was good to go without further tests. Hurrah!

My PET scan revealed that I’m starting to get some buildup in my arteries, so I made an appointment with him in June to start getting that taken of. He’s the nicest doc; he came in 1.5 hours early just to accommodate my schedule.

From there I went over to Norris and had an appointment with my surgeon #2. He’s the head of oncology surgery and he and my primary surgeon will be working on me.

My surgery is at 9:30am on 12/2. After they put me out, they are going to run a unit of platelets. Then they are going to go in and remove the breast tissue and my glob of lymph nodes. Then they are going to sew me up internally, slap some steri-strips on me and let me wake up. They don’t put any kind of bandage on as it heals better without. I will have the compression tube top on. But they want me to start showering the next day.

I also might get sprung from the hospital the following day. If everything goes well, they always discharge their mastectomy patients the next day to avoid hospital infections. How Awesome!

They want me up and moving as much as possible. So I can’t drive but as long as there is no infection, I can go out if I feel up to it. He said visitors are good as long as they aren’t sick and haven’t been hanging out with sick people.

So I have the hospital pre-op clinic on Weds, Friday I have to get a bunch of labs drawn, next Monday the 1st I get a transfusion at Norris, then the big day on Tuesday!!!

Thanks again for your prayers and healing energy and good thoughts! I am truly blessed!

FIGHT ON!


It’s November Baby!

I was going to make this a huge catch up post but honestly I can’t remember things back to August.

Sorry that I’ve been missing in action. I would like to say that I’ve been incredibly busy but, really, I’ve just not felt well and have not felt like posting. I’m still not feeling well but I’ve decided to end my months-long pity party and re-engage in life.

Here’s the update on stuff:

MY LEFT ARM
So it was super hot this summer and my room washot as hell. I spent a few months sleeping on the couch. Given my depressed state, I pretty much was on the couch 24/7. This screwed up my back, neck and left arm. Excruciating pain. I started getting therapeutic massages and my neck and shoulder were loosening up but my arm decided to go numb from my shoulder to my fingertips. This is all still problematic. My left arm looks like Dalmatian skin because I didn’t realize how hot the heating pad I was using until I had horrible burns.

I mentioned this issue to my oncologist when she said that I needed to get scanned again because if my cancer had spread, it could cause these issues.

Niiiiiice.

I was scheduled for an MRI and completely failed it. I just can’t do it. I know now that if I have to have one, I need to be knocked out.

My oncologist then requested that I have a PET/CT scan but my insurance denied it stating that I have to have a chest/pelvis/abdomen CT and a bone scan first. Mostly to avoid the cost of the PET/CT. Those were scheduled for yesterday.

The bone scan went fine.

The CT didn’t go at all. It turns out that the contrast media for a CT is iodine based. I’m super allergic to all seafood and topical iodine makes me break out in an itchy rash. Not good. Next thing I know I’m being told to reschedule the CT and go to see my oncologist about the allergy premed prescription.

At this point, I’m pissed off. It says all over my chart on the fancy new system that I have a severe seafood allergy and NO ONE could see that the contrast media could be a problem???? FUCK!

I go down to see my oncologist and while I’m waiting I see that the medication protocol for avoiding an allergic reaction involves a HUGE amount of steroids. Considering these steroids gave me diabetes, I’m not too enthused about taking it.

Then I see my doc and all hell breaks loose. There was yelling. When I told her that I was uncomfortable taking the steroids and that I would need to consult with my hematologist she was like “why would we need to tell her?” What I came out of that meeting was that I was a pest and uncooperative and why didn’t I just do what she tells me!  I know she’s frustrated but I didn’t ask for any of this. I think she’s putting in another request for the PET/CT based on my allergy to the media.

All this drama because my arm hurts.

MY CANCER

Things are almost the same. I had a mammo and ultrasound and the tumor is still the same size and they can’t feel anything else in there.

But,

My tumor is trying to leave my body.

It was all sleepy and resting towards the back of my breast but about a month ago, we noticed that there is a hard lump that pokes up where my tumor is.

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This is not good.

Eventually, the little beastie will push through my skin and create an open wound which is really not good for anyone, especially someone with immune system issues.

The announcement: surgery is back on the table.

I don’t know when. If you remember all the craziness from my attempted surgery last year, those issues still exist.

I will keep you all posted. I’m totally frustrated.

But hey! I’m seeing Kinky Boots at the Pantages in 13 days!

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