No choice for me.

I’m glad I got everyone up to date last Thursday because, of course, things are different.  Not too bad, but still.

I had an appointment with my ONC last Friday morning.  It ended up being the appointment I should have had weeks ago.  She explained to me that I absolutely needed radiation.  They are worried that since the small lump they found in February needed operated on in May, that my cancer is more fast growing than they would like.  I could just do the Faslodex medicine, but it would take too long to work and I need something that can work now.

So I go back tomorrow to RAD ONC and do the 1.5 hours in the set up chair.  Last week I thought I had a choice and I made my choice.  Apparently, I don’t have a choice.  To make things more interesting, I found another small lump right next to small scar where they just took out a cancer lump.   We are keeping an eye on it; it could just be scar tissue.  But, it made me realize that I have to get zapped.  Grrrr.

It doesn’t help that I still have this weird side pain. My ONC noticed during her exam that I couldn’t take a deep breath so she sent me for a chest xray.  It turns out that I probably have pleurisy – an inflammation of the lining of the lung.   I also have a small amount of fluid in my right lung.  There’s nothing to do about it now but I will get another chest xray in two weeks to see how its doing.  Apparently, this stuff just goes away on its own. Unless it doesn’t.  Blah.

My last CT scan showed that the spot underneath my sternum has grown but just barely – from 6mm to 8mm.  Keeping an eye on that.

I didn’t end up getting my Eligard and Faslodex shots Friday.  My ONC wants me to settle into radiation for a while before I start the other stuff.  So those shots will start in two weeks.  Thank GOD!  My hormones are going crazy with the lack of the old medicine and the start of the newer medicine a few weeks ago.

This week is just radiation with a trip to the endocrinologist on Thursday.   I don’t think my ENDO knows that I’ve even had surgery.  It’s been a while since I’ve seen her.

Nothing else going on.  It’s blasted HOT here in So Cal, so I’ve been mostly inside.  There is a crazy fire up in the Valley called the “Sand Fire”.  It’s nowhere near me, but I have friends that live up that way.  So far, everyone is ok.

A bit of Pam Advice:  If you’re in pain and you take Norco with an Ativan chaser, DO NOT get on the amazon app.  You may accidentally hit purchase instead of delete while playing with your cart.   Luckily it didn’t cost much but I’m now the owner of the “FUN HOME” graphic novel.

FIGHT ON!

 

 


And a month later…(Really long)

It’s not like things have been quiet the last month, but every time I would think that it was a good time to write a new post – something stupid would happen that made the post old news.

The last month or so has been SO FRUSTRATING!!!   There have been two highlights.

  1.  My Aunt Brenda visiting us from North Carolina for a week.  It was so awesome to see her!!!  Can’t wait until I can get back there.

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2. A group of friends and I went to see “Beautiful – The Carole King Musical” at the Pantages Theater here in Hollywood, California last week.  The musical was fun (I’d give it 3.5 stars) and hanging out with my friends was wonderful!

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Other than those fun things, I have been totally overwhelmed with the SHIT I am having to deal with with this cancer recurrence.

What they did during surgery:

  1.  There was the initial lump that we found in february that was on my left side.  There is about a 1.5 inch up/down incision there where they popped out that tumor.  To be honest, I didn’t even remember that I had surgery there.  No pain, no nothing.
  2. I had another tumor in my clavicle, nestled snugly around a vein between my pectoral major and minor.  That was more of a pain in the butt.  They had to cut through and remove a part of the pec-major and remove the pec-minor.  Then they had to cut through my vein and pull the tumor out.  Luckily my body did what it was supposed to do and it created a capillary that went neatly over the tumor.  I did not lose any circulation – thank goodness.  This has been a huge source of pain and suck.  The scar is about 5 inches long and runs from just under my armpit diagonally up my chest.  They say that I might not get much strength back in that arm. And it makes my shoulder roll forward a little so I look a little dented.

So I had my hospital stay (read prior post) and then I got to go home.  I slept on the couch for a few weeks as my arm just wasn’t comfortable anywhere.   I’m still unable to really sleep comfortably on my left side.

I’m not bouncing back from this surgery like I did from the mastectomy.  I think that the length of time I was under (4 hours instead of 1) played a part, plus that I had that horrible night in the ICU.  I was much happier at home but still stressed because I couldn’t drive.  My mom did everything in her power to make that a non-issue but I hate relying on people for stupid things (like getting me an iced tea).

After a few weeks, I was healed enough to be released from post-surgery care.  I didn’t do Physical Therapy as I had done the home exercises faithfully and got my arm working again by myself.  So this was when I expected to hear about my treatment plans.

Except, I heard nothing.  NOT A THING.  Nada.  Zilch.

I even emailed….got nothing.

Finally I got an email saying that I’m having radiation and a drug called danazol. Oh, and stop your estrogen blocking drugs.

What?  You mean the radiation that they REFUSED to do to me when I first got diagnosed because it could permanently damage my bone marrow and that would be worse than getting cancer again?  and WTF is danazol?

So I had to research it myself.

Danazol is an androgen steroid that is testosterone based.  It has helped breast cancer by smacking the tumor with hormones which overwhelms it and it stops growing.  The drug also has been known to pump up bone marrow function.  It also has a ton of horrible side effects.

“Everyone” agrees that I need to do radiation.  The pathology report came back from my surgery and they weren’t able to get clear margins on either tumor.  This means that there are microscopic levels of cancer remaining in the tissue near where the tumors were.  So they want to zap those areas with radiation to kill them.  There is a spot near my sternum that they weren’t sure they would have to Zap and if they did, my hematologist would have to get involved.

This makes sense to me.  Zap! Zap!  for 33 days.  As light of a dose as possible so that my bone marrow is spared.  I agreed to this, met with the Rad-Onc doc and went in two weeks ago to have the planning session.

After the planning session, my ROD (rad-onc-doc) told me that they were going to have to radiate that spot near my sternum and she was going to talk to my Heme (atologist) before I saw her myself a few hours later.

I went to the Heme and we chatted and we were both uncomfortable with the ROD findings and I made the decision to NOT move forward with radiation but I would start on the Danazol.  (Started two weeks ago, no issues except really good blood sugar numbers).

The next morning (back again for transfusion) I ran into the ROD at Starbucks and told her that after talking to the Heme, I wasn’t going to do radiation.  She gave me a funny look and it turns out that she, my Heme and my Onc had had a lengthy email conversation the night before and had all decided that I WOULD be having radiation.  Nice to know that my opinion counts.   So I went OFF about not getting a clear plan and not being involved and later on my Heme came to talk to me about what had changed her mind.

Apparently, the next logical place for my cancer to spread (and it will) is to the nerves in my shoulder.  If it moves there, it would be considered inoperable and I would be at a level of pain that would require me to basically be sedated.  So the three docs decided that I would have radiation in the original spots and not to the places near the sternum.

At this point (2 weeks ago), I’m getting really pissy.  I honestly don’t feel like I’m getting a straight story from anyone.  Ready to move to another hospital for treatment.  Anxious all the time.   I just burst into tears at any point (this is still happening).

At this time, I find out that I am going to go on a medicine called Faslodex.  It is used when a person has the type of cancer I have and got a recurrence while on hormone blocking drugs.  The deal is that it is two shots in the butt, every two weeks for three sets of shots, then shots once a month for …ever…  With my lack of platelets, it is dangerous to get shots in the muscle because they can cause internal bleeding and infections.  So when I get these shots, it has to be after a blood transfusion so I’m as blooded up as possible.   ALSO, this drug is for post-menopausal women, which I am not, so I have to go back to getting Eligard shots once a month to smack me into menopause.

The reason for the Faslodex?  They saw an interesting spot under my sternum at my last PET/CT.  It was super small so we’ve been keeping an eye on it.  They were hoping that it was just some scar tissue from the pneumonia I had in February.   Well, in looking at the CT from the radiation planning session, it looks like it is growing.

Fuck.

In order to biopsy it or get it out, they would have to break my sternum.  Much like an open heart surgery.  The faslodex is being used to hopefully keep it where it is.

Yesterday, I went in to have my first radiation session.  I knew it would be longer because they have to do all of this setup and calibration the first time.  I was going to be dealing with that for an hour. Then the zaps.   I’m a curious person so I started asking the therapists about how long I would be there and the length of time getting radiated.

1 hour for setup

30 minutes for radiation.

30 minutes is quite a bit longer than the 10 I was told.  The therapists even started saying 10 and the ROD said, no, she’s 30.  Then I looked at where they were set up to zap me and it wasn’t just the 2 places, it was 5 places.   One of the places was just barely missing the sternum.  I was told we weren’t going over there at all.   I asked her to explain it to me and she got defensive like I was telling her that I didn’t think she did a good job or something.  So I went back to the radiation machine room.   I had been crying most of the day, panic attacks left and right.   I tried to hold it together but I lasted about 10 minutes before I had to get out of there.

When I get panic attacks, I feel like I’m being strangled.  The position they needed my head in for 1.5 hours was slightly tilted up.  I knew I could breathe but it felt like someone had their hands wrapped around my throat.  So I said forget it.

My ROD went to talk to my ONC and my mom and I up with them.  They told me to take the rest of the week and I made another appointment for next Monday morning to try again.

Tomorrow I’m getting a transfusion.  I may or may not be getting the Eligard and Faslodex – it depends on if the insurance can approve it in time.  If not tomorrow, I will start them in two weeks at my next transfusion.  I am ok with these two drugs.  This makes sense to me.

I am so uncomfortable with the radiation.  Please don’t say how easy it is and how you don’t feel it – those aren’t my issues.  My issue is the possible damage of my bone marrow.  Mine already sucks, if it gets further damaged (and we won’t be able to see it coming, it’ll just happen) then I’m looking at being in the hospital a few times a week for infusions and not a long life of that.  That doesn’t sit well with me.

I see my ONC tomorrow before my transfusion and I have tons of questions for her.  I also emailed my HEME and asked her about the extended radiation.

I’m wondering if my panic attack the other day was because my subconscious is trying to tell me not to do it.   I guess it comes down to whether I’m more worried about getting cancer again or damaging my bone marrow beyond repair.   I think my bone marrow wins.  But I’m going to get my questions answered before I make a final decision.

I’m also looking at alternative, more natural methods.  But that’s another blog post.

I’ve just felt so sad and angry and depressed about all of this.  I’ve been praying and meditating and I get to a good place but then I get a text or call that the variables have changed and the good place has to be tossed aside and I’ve got to get there again…lather rinse, repeat.. I’m just so tired.

Other than this crap, I’m okay.  I have things to look forward to.  I just have to make a decision and stick with it.

Thanks for getting through this with me.  It’s hard for me to express my feelings in real life but easier to let you all in on things here.   Plus there’s no crying for you to deal with.

Although with my med changes, I’m experiencing hormones for the first time in 3 years.  I don’t want them anymore!!!  Bring on the shots!!!

Hope you are all well!  XOXO

FIGHT ON!

 

 

 

 

 

 

 

 

 

 


2 Fevers and a Surgery Later…

I’ve been meaning to post an update since my MRI but I kept landing in the hospital.  Go grab a drink and snacks…this is going to be a long update.

My last post had me successfully undergoing an MRI.  I posted about how great it went and then took a nap.

Post nap, I didn’t feel very well and I had a fever.  I took some Tylenol and the fever never went away.  As my temp was at/above my call the doctor level, I called the doctor and spent the next three days inpatient at Norris.  They couldn’t find out a cause of the fever but someone mentioned that I might have had a reaction to the contrast media they shoot into you during the MRI.  They filled me up with tons of antibiotics, my fever broke and stayed away for 24+ hours, and so I got out that Sunday ( 4 days post MRI.)

Monday, Tuesday, and Wednesday, I didn’t feel great.  I assumed it was just a result of all the antibiotics from the weekend before and just slept a lot.  I was also super stressed because of the big surgery I was having the next week.

On Thursday, I woke up feeling like someone was running knives across the inside of my abdomen.  I started eating super bland but was doubled over in pain.  That night, I got a fever.  Now, I know that I should have called my doctor but I was SO NOT in the mood to be admitted.  I waited until the next morning, (Friday), still with a fever and my doctor wanted to admit me again, especially as I was still scheduled for surgery the next Tuesday.

They packed me full of antibiotics again that didn’t help my stomach pain at all.  On Saturday, I had a new attending for the weekend that actually saw past my blood results and prescribed me an antibiotic for diverticulitis.  Within two hours, I felt TONS better.  So they stopped the hard core antibiotics and I got sent home on Sunday with two weeks of oral antibiotics.

I spent Sunday resting up from my weekend inpatient.  Monday was the day before surgery and I spent the day doing all the chores I needed to have done while I was wasting time in the hospital over the weekend.

Tuesday, Day of Surgery.

I had to be at the hospital at 8am with surgery at 11am.  So I get up at the ass-crack of dawn to take a shower so that one hour later I could do the wipe down with those crazy hospital wipes.  I hate those things.  They left my skin sticky for hours.

We get to the hospital and my brother & sister-in-law were there.  I had about 15 minutes to chat before I got called to go back.  I grabbed my mom and went to pre-op.  I got a bed and they had me put on the purple gown and socks.  It was so hot back there and the gown had this thing where you could attach a hose that blew hot or cold air.  I tried that but it ended up being a pain.

I’m also not one to go commando, so I generally leave my pants/shorts on until they are about to wheel me back.  Everyone that came to check on me pointed out that I needed to take them off.  Like I’m some sort of idiot.  I stopped explaining after a while.

They got an IV in without a problem which was a relief.  That never happens.  Then they proceeded to infuse 2 units of platelets.  The plan was that I would be wheeled off to surgery a few minutes after the platelets were done.  After surgery, I would be taken to ICU, not because I would need to be there but because I would be getting a 24 drip of a medicine to boost my immune system and I needed supervision.

Best laid plans…

11:00 comes and goes.  By now, I’m starving, super nervous and my head hurts like someone is hammering on it.  My surgeon comes by and lets me know that the case before me is taking longer and it would be another hour.  It ended up that I didn’t get wheeled away until just after 1pm.  I was so frustrated.  I ended up panic attacking a few times in those two hours.  PLUS, my surgical team kept coming back to me and telling me more things they want to do to me that weren’t discussed prior to surgery.  Some of the highlights:

  1.  Putting me on a 24 hour insulin drip.  The thing is, they don’t have the insulin that I actually take.  The insulin that they would put me on would be what they normally use, that I have used before, that doesn’t work.  I finally had to put my foot down and let them know that that wasn’t going to happen.Why in the world would they bother putting me on a drip of a medicine that they know doesn’t work?  Grrr.
  2. I had been told that I wouldn’t be given any type of central line.  The second anesthesiologist came to talk to me and said that they would be putting in an arterial line so that they could monitor my vital signs during surgery and in the ICU.  Well, I went into a bit of a rage and informed them that that would NOT be happening.  If they needed an arterial line, they could put it in after I was unconscious and it would be GONE when I woke up.  I’m thinking that they aren’t used to patients flat out refusing them because he looked taken aback.  WTF?

Finally they came to get me and I remember going into the OR.  All of a sudden they are strapping me onto the table and about a thousand faces were staring at me.

So I go into a panic attack and start screaming.

And out.

I wake up being wheeled into recovery.  They had put some goop in my eyes during surgery so that nothing would get in them so everything was goopy and out of focus.  I saw a clock and it was 5pm.  So much for a 1 hour surgery!  I stayed in recovery for about 20 minutes and then got moved up into the ICU.

As soon as they got me in the ICU, I had to use the bathroom.  The nurses started going for the bed pan and I’m like “UH NO!”  So I got up and walked to the flushy toilet.  They couldn’t believe I was up.

So I’ve never been a patient in an ICU.

I failed the ICU.

I’m an independent person, especially in the hospital and I didn’t realize beforehand that they do not let you do ANYTHING without supervision.  I was also hooked up to a ton of machines.  The bed was a super expensive state of the art bed that automatically inflated and deflated different areas so as to avoid bed sores.  On top of that I had things on my legs that were inflating and deflating to increase circulation in my legs.

This would have all been fine if I was intubated and unconscious, but, I wasn’t.  I was fine.

There were issues with my prescriptions.  The hospital doesn’t carry some of them and things go best if I keep my medications next to me at bedside and administer them myself (both against hospital policy).  My doctor gave me permission to do so and wrote it in her orders.  That wasn’t good enough so the ICU staff kept putting me off telling me that it was all my doctor’s fault.  Meanwhile, I was starving and needed my insulin.  They gave me a sandwich around 8pm but told me I couldn’t eat it or take my insulin.  At 11:30pm, I had had enough and threw a temper tantrum that could rival any 3 year old.

I texted my doctor and told her that they weren’t letting me eat or take my medication.  I texted my mom and cried to her on the phone.  Then the bed was deflating and inflating and I had these stupid things on my legs.  I starting disconnecting all of the machines I was connected to, ripped off and threw the leg things across the room and had just jumped off the bed from hell when all the bells went off and the nurses came running into the room because I registered no pulse or blood pressure.

I grabbed my IV pole in front of them and started to walk out of the room when they basically held me back and said it was against policy for me to walk unattended.  I think the phrase I used after that was “FUCK YOUR POLICIES” and one of the attendants had to walk and catch up with me.

After two trips around the desk (this is 6 hours post surgery), I saw the doctor in charge of the ICU and basically told him off and wondered why I was still unable to take my meds and eat and why couldn’t HE put in my medications.  While I was yelling, the phone at the desk rings and it’s my doctor who rips him a new one.

Pharmacy magically appears and wants to take all my medicine with them and store it for me then bring it to me at the appropriate times.  I told them that I would not allow my medication to leave the room and if they needed to process it or enter it in to a computer, there was a computer there and they could do it in my room.

Which they did.

At 2:30am, I finally got my sandwich and insulin.  I tried to get into bed to get some sleep but the bed kept trying to have a relationship with me.  It felt like you were in one of those long blow up rafts that you use in a pool where you get in the middle and you get surrounded by plastic puffiness and you can’t get out.  So I got out of bed and sat in a chair with a pillow and blanket with my feet propped up on another chair.  Nurses didn’t like that so they had to go find a recliner and I slept in that.

The next day I was still frustrated but more zen with the ICU process.  My doctor came in and suggested that I stay the whole time in the ICU and I told her, No thank you!   My 24 hour medicine ended at 5:30ish and I was in a regular room on a surgical floor by 6:30pm.

Everything went fine after that.  I had fantastic care and was out of there on Friday.

That Tuesday though, between pre-op and my ICU/pharmacy trauma was a freaking nightmare.

 

OK… My left arm, shoulder and hand is numb.  More later, including what they actually did during surgery and how I’m doing now…

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!

 

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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!

 

 

 

 

 

 

 

 

 


The beginning of a long week…

I think that doctors schedule for tons of appointments in the week before surgery so that you don’t have time to think about it.

Last Friday I had an ultrasound of my side because my surgeons knew that there were affected lymph nodes from the big tumor up my side into my armpit but couldn’t actually feel them.  The radiologist found them but they are apparently way in my muscle and have had an effect of some of the veins in that area.  So I may be having another ultrasound this Wednesday to show the surgeon.  If that isn’t enough information, I will have to go to Cardiology and get some super ultrasound.  I don’t even know when that would happen as I’ve don’t have a lot of extra time this week.

From where he was poking around and found the tumors, I’m not too excited at what might be the possible recovery.  As usual, I’m hoping for the best.   Right now, the original tumor feels like it’s doubled in size from a few weeks ago and it’s causing some major pain that shoots up into my shoulder.  If I remember correctly, I had severe shoulder pain with the last one and as soon as it was removed my shoulder felt MUCH BETTER.  Fingers Crossed!

Tomorrow is pre-op with the hospital.  I have to be there around 8:30 – 8:45am.  Not looking forward to getting up at the crack of dawn.  They said it would take about 90 minutes at most.  I’m going armed with information.

Wednesday is my normal lab tests, because it’s a blood week!  Then I see my surgeon/s for further instructions and to get my 1000 questions answered.  I remember most of it from the last time but now it’s different because it is not a mastectomy.  I have no idea if I’ll have drains in or if I’m having a compression bandage.  Lots of questions.

I do know that I’ve got to get a compression sleeve for my left arm.  There’s a risk of lymphedema when you mess with your lymph nodes but I’ve been lucky not to have had my arm swell up.  Now that they are going back in and messing with more lymph nodes, the risk of lymphedema is even higher.  So my plan is to find out if my insurance will cover a sleeve that I can order this week through Norris, then, once I get paid, I’ll get a cutie one in purple or something from a trusted source online.

Thursday is free so far, but Friday is my normal transfusion day, so I’ll be back at Norris.

I’m still unsure about the plan for Monday/Tuesday.  I think I’m getting labs drawn Friday morning and then going back for more blood on Monday so I have extra.  Tuesday I have surgery but I have NO IDEA when!!!  I’m hoping they will tell me tomorrow at pre-op.  I mean, someone has to know, right?

I’m sort of hoping that they will admit me on Monday and give me my blood in the evening and then I’ll already be in a room for surgery. There is a separate tower for surgeries for Norris patients.  Plus, they have room service!  You use your TV to order snacks from food services.  Such fun!!!  I’m totally taking provisions though.  Last time I had to wait forever for the dietary order to go through post-surgery.  I’m not getting caught again.

I’d like to thank you all again for the amazing support and love coming my way.  This time, psychologically, it’s a bit harder.  Plus my medications that suppress my hormones are at war with the tumors that are full of them.  I’m like a crazy person.  Everything is pissing me off to a level that is off-the-charts.  Please divert some of your prayers to my mom who has to listen to me literally screaming obscenities at inanimate objects.   I’m doing better now.  I couldn’t figure out why I was so enraged but now that I have recognized the possible issue, I’m able to better control my outbursts.

Thank god for Prozac and Ativan.

I do have a request.  Please don’t call me.  I’m not a phone person to begin with but right now I’m so overwhelmed and stressed that I just can’t deal with phone conversations.  If you want to text, facebook or email – great!   I just feel the need to totally curl up in the fetal position most of the time and when I uncurl I can answer your texts.   Thank you so much for understanding.

I’m sure I’ll know more tomorrow.  I need to go to bed now as I just looked and I have to get up in 6 hours to get to that stupid appointment.

Fight On!

 

 


The Results are In! (sort of)

Today was a very long day.

Up at 4am, get ready, leave at 5:30am for USC.  Get there at 6:40am.

Scan from 7 – 9:20am.  Then Labs.  11am with the Surgeon. Which ended up being 12:15.

Scan went fine.  I was almost all the way through it when the tech asked if everything was ok.  He heard me singing the soundtrack to the “Nightmare before Christmas” and thought I was talking to him.

Nope.  Just singing.

I don’t know what it is about that machine but I always think of that movie.

When I saw my surgeon, they only had the preliminary PET/CT scan report – so the results could change again.  The news is good.  Not as great as it could be but definitely not a horror show.

I have the original lump that is on my side in the area where a bra would come across your side.  The PET/CT showed that lymph node but also lymph nodes that go up my side into my armpit.  Basically the exact same area that was removed during my last surgery.

This turns my surgery from a 15 minute lumpectomy to another axillary dissection.   I won’t be able to leave the house for two weeks and not use my arm for at least a month.  Suckage!    I told my surgeon that I had tickets to “The Little Mermaid” at the Hollywood Bowl on June 3rd and that I WOULD be going.  She said that she didn’t think that would be an issue.

There is a little possible hiccup.  On the preliminary report, the radiologist noted that there was a “suspicious” spot underneath my sternum.  My surgeon was going to try to sit with the radiologist today and go over the films to get a definitive answer.  If it is cancer, that is a much more involved surgery.  Lets hope that it isn’t.

She thinks that I will be having surgery in May but as we know from cancer round 1, anything I hear is good only for that day.

That’s the status o’ the day.  Transfusion on Friday.

FIGHT ON!