On The First Day of Chemo My Oncologist Gave To Me....

A crazy long day, and boy was it ever.  But my team took great care of me through it all.

Everything was running a little behind right from the start.  It happens in the afternoon, so I just kind of rolled with it.  I got back to my infusion cube right around 2:30.  And as I'm prone to do, with in about 5 minutes I was settled in for a nap.  I have been using an app called Pzizz, which pretty much knocks me out.  And I hadn't really slept great, so I popped in my headphones and just relaxed.  At one point, I heard over my head phones "We're still waiting on Ms. Mink's medication, can you give us an ETA?"  By time I got around to opening my eyes, a representative from the pharmacy was visiting me to let me know what was going on.  A higher dose of my meds then was normally given on the first dose was ordered, and they had needed to run down my doctor to get her to re-write my prescription.  They will not pre-make my meds, so I expected there to be a time lapse, but this was longer then normal. They had just gotten the revised prescription, and were making up my dose.  Cool, shouldn't be that long. 

After Ms. Pharmacist left, my favorite nurse from my last go around with infusion stopped by to make sure I was doing okay, and check and see how my mom and my one sister (He spoke to both several times last time around) were.  I told them both were fine, and that he'd probably see my mom before I would, since he was leaving for the day soon and she was chilling out in the waiting room.  She had gone out to get lunch, and at this point, my only regret was that I hadn't asked her to bring me something.  Because I'd already gone through the snacks in my chemo bag, and I was pretty much starting.  Well, bless my fave nurse, because he says to me "I'm pretty sure we still have some wraps around here, would you want one?"  Seriously, it was like the angels were singing.  I was all about food, and Steven hooked me up. Not only that, I got a couple of cranberry juice cups to go with food.  It was perfect!  I really couldn't ask for me. 

Except to get things rolling.  My Meds showed up just after my sandwich wrap did.  And they went to hook me up, and there was some sort of problem with the instructions.  Everyone was doing math, and I got to be weighed again and once again, the pharmacy was called.  I still am not quite sure what was going on, but finally things got rolling.  The first med was a 90 minute infusion, then the second one is another hour.  It was after 4:00 at this point, so I knew it was going to be a long night.

Long enough that my poor mother was the last one in the waiting room and they turned the lights off of her.  She has never come back to my cube, because she doesn't want me to feel like I need to entertain her and she wants me to be able to sleep or do whatever.  I think she also doesn't want to see me all hooked up, which is totally understandable.  But someone went and grabbed her so she wasn't in a dark waiting room and she rode out the last hour and a half of my treatment with me. 

We managed to leave after our friends the valet's closed.  Mom ran and got the car just before they shut down, so that we didn't have to wait forever while security tried to run the car down.  It was weird to walk out of there with all the clinics dark, but I wasn't the last one to leave.  There was one other patient left in the infusion lab that was being worked on.  Even though it was a Wednesday, it seems to be a Monday in medical land.  The other patient had 2 of her veins collapse during her treatment, and her chemo had bled out into her arm.  They were trying to make a couple of little cuts and get the majority of it out, but she was going to have to come back for additional treatment the next day.  Guess I got lucky with just running behind.

Today was pretty good.  I needed a nap, but that is to be expected.  Fatigue is a major side effect, and really one of the easier ones to deal with.  A 2 hour nap and I was good to go.  I have had a couple of other side effects to deal with, but nothing that I couldn't manage.  I didn't need to take any medications for it, so I'm just taking it as it comes.  Tomorrow, I'm hoping to be able to say the same.  I even went out to visit with my sister, niece & nephews.  It was a half hour, but it was still a half hour outside of the house.  Already a better day after treatment then I had the last time around.  I'm going to enjoy the good times, deal with the bad times and hopefully will be able to return to work on Monday.  I'm keeping my fingers crossed on that. 

The night before my treatments start, what am I doing?

Besides the fact that is has been a stupid couple of weeks with work, moving, car issues and the always underlying medical stuff, tonight is kind of a strangely quiet night.  The friend I'm staying with just left for a vacation and I spent most of the day working.  When I got home, I had to get a couple of things done around my new room.  I still have boxes packed and stacked in all the corners and at the foot of the bed.  I had to pack quick, but I've been kind of lazy about unpacking.  A little at a time, I'll get there.  But what I did do tonight is get the water proof mattress cover on the bed.  One of the side effects of the meds I'll be on is uncontrollable or "killer" diarrhea.  Sounds like a whole lot of fun right?  I wouldn't have even considered getting a mattress cover, but when I was diagnosed the first time, a former co-worker of mine was also diagnosed.  She went in after hearing about my diagnosis, and found out that she had extensive places that her cancer had already spread. In the process of her treatment, she had an accident, and ruined a bed without her knowledge.  It wasn't until she woke up after rolling into something wet and gross that she realized what happened.  So yeah, one of the first things I did was get the 10 dollar mattress cover.  Seemed like a wise investment, even if I'm hoping like hell I don't need to ever use it.

Besides getting the mattress situated, I have a table of electronics charging.  I have my phone, a kindle, an iPad, an android tablet and an iPod getting ready to go, as well as some portable chargers.  Check in tomorrow is 11:40 at the lab.  My infusion is expected to start around 2:00 sometime, assuming that my oncologist appointment runs on time.  I also have at least 2 hours in the infusion lab, so I don't expect to get back on the road home until close to 5:00.  That's just a long time to try and keep myself entertained.  I have the new JR Ward book to jump into though, so that will keep my attention for a while at least.  I've been saving it just for my first treatment day.

I also have my chemo bag mostly packed.  I downsized from my last batch of treatments.  Figured out things I need and don't really need.  So now I have a prayer shawl that was crocheted by my friend's late mother, my chemo cap, which is really just a hand knitted winter cap based off of one that is worn by Jayne on the now cancelled Firefly.  Loved the show and wanted a fun hat to wear since my treatment last time was in the winter.  I also have a bunch of different things to suck on if I get the dreaded metallic taste in my mouth while hooked up to the meds or when they are flushing me out.  Mints, Luden's Cherry cough drops, Life Savers...  There's a bag of unscented lotion and a coconut milk EOS as well.  Oh, and my electronics pouch, which will hold the portable chargers and have extra cords and stuff.  I also have my baby Dumbo stuffie sitting on top.  I also have some healthy trail mix (no chocolate) and some fruit snacks and some extra meds (Motrin 800's, Xanax & Omeprazole) to take right before everything starts up.  I used to carry a water bottle, but Karmanos always has water and juice available for their patients.  The usually have some graham crackers and little things like that as well, in case of emergency.  I'm sure that things will change in my bag as I figure out how long infusions will really take and what I prefer to do during them.  Last time around, I slept.  And by slept, I mean I usually didn't even hear the nurses come in and out of my cube.  Ear buds in and I was out cold.  I guess I'll feel really silly if that happens tomorrow and I prepared all the stuff I'm taking to try and make it fun.   Well, I'd rather be over prepared then not at all I suppose. 

So I think I'm ready.  Just need to get through tomorrow.  Then I'll have a better idea of what to expect and that is all I've been waiting on.  The not knowing is what drives you nuts.  And I'm already half way there, no need to be pushed any further over the edge. 

Take Your Wins Where You Can Get Them...

It's been a stupidly rough couple of weeks around here.  No other way to say it.  I've been battling landlords, the State of Michigan and insurance companies for the last few weeks, and honestly I'm over it!

I'm currently in the middle of a move from the apartment I've called home for the last 10 years.  I had fallen behind on my rent when I was going through treatment the last time.  I caught back up with the help of some amazing friends and then when I still wasn't working fell behind again.  I had a working agreement with my landlord for payment...  Until he found out the cancer was back.  He decided then to be a douche bag and not let me see how treatments were going to go before deciding that I needed to be kicked out of my place.  I managed to pack 10 years of life up in 3 days and get the majority of it into a storage unit last Friday.  I have to be out of my place on this coming Friday, and I'm not moving all that fast right now.  I don't see making things any easier for my landlord right now.  At least I landed softly for the most part.  I have an amazing life long friend who is going to let me move in with here while I figure out what I'm going to do next.  A lot is going to depend on how badly the treatments wipe me out.  Doctors said they would support me if I want to work, but are equally supportive if I can't/don't want to.  I'll see what happens over the first month of treatment.  If it's not to bad, I will probably try to work, although disability paperwork was sent in already just in case.

In this time, the State of Michigan also decided to rear it's ugly head.  When I was diagnosed in 2014, I didn't have insurance.  I applied for emergency medicade, and was rejected.  I applied a second time, and they were able to finally approve me.  Since then it has been a constant battle to keep my insurance.  I was cut off in January with no warning (I didn't know until I was at the doctors office as a matter of fact) and then I was reinstated at the end of February.  Which was just in time for the tests and the new diagnosis.  When I went to talk to my case worker, she told me that because I had made too much money in the previous 3 months, the state was going to likely cut my insurance.  Because every cancer patient wants to hear that.  Initially I had been approved for my treatment to start, but that got cancelled during the whole deal of me having made too much money in December.  My case worker was extremely unhelpful and really very hostile.  I filed an appeal and for a hearing and basically threw all sorts of paperwork at her when she called to say that my insurance would end on April 30th.  Basically anything I could do to prevent that from happening while I tried to figure out what my next step was.  But I was told by a DHS Customer Support person who was extremely helpful that as long as I had appeals and hearing requests in, they couldn't just cut me off.  First truly helpful DHS person I've ever dealt with, or at least it seems that way!  Today I had my "pre-hearing" and it appears that my case worker was wrong.  I have my insurance re-instated and an open end date at this point.  I met with my worker's manager who couldn't have been more friendly or helpful.  We talked about treatment and prognosis' and expectations moving forward, and it sounds like I at least don't have to worry so much for a little while at least.  I don't expect my case worker to get any more competent or helpful, but I can hope.  And I'm chalking this up as a total win.

I also have my first treatment scheduled for next week.  Which is awesome.  I'm ready to get this train on the tracks and get to shrinking tumors.  I talked to my NPR today and got all the details on how things will work.   That I was able to get in after being canceled last time is awesome.  They're squeezing me in I'm sure, but it's greatly appreciated.  I'm trying to remain calm about what's about to happen, but I'm a bit of a worrier.  So I'm a little hopped up about it, and until I start and find out that my imagination is way worse then reality, I'm going to be on pins and needles.  But I'm ready to roll and have a slot with the infusion team.  So that is also being chalked up as a win.

During all of this going on, I also managed to nuke my car.  It's old and I suppose to be expected, but seriously timing couldn't have been worse.  I was going to get money to tip my movers with when it died on the side of the road.  Not far from home, I was able to catch a ride back to my place, and my sister & brother-in-law was able to help me get it towed.  Checked in today, and they were able to determine I somehow managed to shear off my fuel modulated from my engine.  Yeah, don't ask me how.   But it has to be replaced as well as getting new spark plugs & wires.  It should be ready tomorrow.  Big win there!  I don't live in a place where you can be without a car.  Michigan is the car capitol, not the mass transit capitol.  It's only an arm and half of a leg to get it taken care of, but to get my independence back and be able to finish this move without bugging more people is well worth the money I don't really have to give.  So I guess that is a win as well!

So today I managed to figure out health insurance, a car, move a bunch of boxes and get set up for my treatments.  Not too bad, especially since it's been such a crap time the last couple of weeks.  I'm afraid to say this out loud, but maybe things are turning for the better.  I should probably knock on wood or something now that I've put that out in the universe.  Hoping it's true though.  I could use a little good luck right now.

To Biopsy or not to Biopsy...

Today was a wild ride of cancer crazy.  Spent the better part of the early day at Harper Hospital, where all of the surgeries and procedures for Karmanos happens.  When I got my diagnosis last month, the doctor said that my CT scans were with the pulmonary guy, who was going to decide if they were going to try to biopsy one of the spots to confirm that it was the return of the Melanoma (likely) or a new type of cancer (considerably less likely).  There was a question of safety based on location and size of the nodes.  I thought that since it took three weeks for the biopsy people to call me that they had just decided it wasn't worth it.  Nope, they called and scheduled me last week, so my mom and I made the trip downtown, since I was going to be under sedation and couldn't drive myself back home.

Get to the hospital, and the one thing I notice when we aren't in a Karmanos lab or clinic is that you really do hurry up to wait.  They don't know you name and they don't care about your story.  You're a name and a patient ID to them.  At least when you're in the waiting area.  Once I got called back, there was a little more personal care, as in the nurse knew my name and we had a couple of nice chats.  I got my port all hooked up and that started the line of doctors and nurses that were going to come into the cube asking me the long line of various questions.  Started with the anesthesiologist.  "Have you eaten this morning?   What meds to you take?  When was the last time you ate anything?  Who is this with you today?"  I'm pretty sure he hadn't looked up from his computer until that point.  And when I told him it was my mom, he looked up to acknowledge her and then he did a double take.  I come from a long line of good genes.  I don't look my age and my mom certainly doesn't look hers.  He looked back to me and asked "Did you just say you're mom?"  And I nodded.  And it went from a show all about me to a show about my anesthesiologist hitting on my mom.  The man was practically tripping over himself.  It was funny, and actually kind of embarrassing.  He stuck around after finishing his questions, to chat for a few minutes, and then he left.  My mom and I were giggling at what had happened, and as usual it was obviously my fault that my mom was being hit on.  He popped in one last time, just to see if we had any more questions, which made us laugh even harder.

They rolled me into the procedure suite, and they tell me that I'm going to do a CT scan first so that the doctor could make sure where the node was (Ummm.. wasn't he supposed to know this already?) and then decide if he was going to do the procedure (Again, shouldn't he know this?).  The nurses let me hop from my bed onto the CT machine, and then one of the nurses tells me that I'm going to need to roll onto my side for this, and that I'm going to be tied to the bed.  Yeah, that got a highly inappropriate giggle from me.  It got a couple of chuckles from the other nurses as well.  She kept trying to come up with other ways to say it, but nothing was working so she continued to go with me being tied up, in not a kinky way.  So I'm rolled on my side, in a fetal position, which is never particularly comfortable, hooked up to an IV, tied up so I can't move and they shove me into the tube head first.  I'm claustrophobic, and while I've never had problems with CT scans, I was told this might be tight.  Ummmm.. Why didn't I take any anxiety meds this morning?  They also weren't going to start my feel good juice until they decided what they were going to do.

Oh, did I mention my fingers were also falling asleep during all of this?  Yeah, it was a great stay in the tube.

In the end, the doctor called my oncologist and decided that he wasn't going to do the procedure.  Based on location and size of the node, it wasn't worth the risk.  If the node were larger (Yeah, glad it's small thanks!) and he knew for sure he could get it on one grab, he would have gone through with it.  Since my doctor could treat me without the biopsy, it was scrubbed.  After I was tied to a table and all hooked up.  Ahhh.. Melanoma.. The gift that keeps on giving.

But, I did get to show off my new tattoos on my back.  The doctor did not appreciate the one, but the nurses all though tit was awesome.  So I'm going with them.  I went with "Fuck Cancer" in a feminine font.  He said he would have preferred "Destroy Cancer"  But I figure I liked my sentiment better.  One nurse also caught the small one I did on the inside of my surgery scar.  It's small, but just as meaningful to me.  It says "Not Today..."  The inference is not tomorrow or the next day either.  I will continue to battle and deal with situations like today, where if someone had just looked at my scans ahead of time, it could have saved a lot of time, worry and me being tied up in a not so good way.  Ah well, live and learn! 

Oh, and by the way...  Anesthesiologist guy came back to see me after I got dressed and was waiting for my mom to be found.  He wanted to see my mom again.  But when she wasn't there, he made sure to tell me how cute he thought my mom was.  Seriously, can't take that woman anywhere! 

A Catch Up Post

I fell behind on my blogging.  I meant to go through every step and blah blah blah.  Probably bore the hell out of people who might be bothered to find this page someday.  And you know, life happens.  Things that make my cancer look like a bothersome fly and not a life altering issue.  But now I'm home again and can maybe catch back up.

I had my chemo port inserted, and it's finally stopped hurting.  We even got to try it out the other day for blood work.  It hurts way less then the normal try to find a vein and hope you get a good one game I normally get to play.  I always feel bad for the lab techs, because I'm pretty much an impossible stick. 

When I found out they were doing a port instead of the Pic Line I had the last time for treatment, I was a little freaked out, but then I realized one really cool thing.  I was going to get to be like Iron Man.  Yes, that's right boys and girls, I can make the most mundane things fun if I'm given the chance.  I was so serious, that at one point a friend called me and said "You do know you can't have them insert a glow stick in your port right?"  Well, duh!  I was thinking a glow bracelet.  But whatever!  The day of my procedure, I did talk to the two male techs who were prepping me.  Cory and Evan weren't sure if I was serious or not, but it totally cracked them up.  What made it worse (or maybe better) is that Cory was taping down my right breast so that they could insert the port in a more "natural setting"  and you know, my girls are unmanageable on a good day.  So seriously, he went through a roll of medical tape to get that bad girl to stay where she was supposed to.  So he's strapping me down and I am cracking wise about glow sticks.  They were probably a little younger then me, but still maybe late 30's.  Evan couldn't stop laughing, and said that they were both of the age that they grew up in the 70's and 80's and loved comic books, and thought my idea was the best ever.  Of course it was, it was mine!   The ended up looping me out pretty good, and when the procedure was done, they woke me up and Evan tells me "I couldn't get the doctor to agree to a glow stick, so we used an LED light instead.  I hope that's not a problem."  The doctor had no idea why we were all cracking up.  I mean, I was probably laughing harder because of the loopy juice they gave me.  He had to explain my suggestion.  I also said I think that someone should give them a grant to study if that can be done.  I mean seriously, if kids get different colored casts, why can't cancer patients get cool ports?

Other news while I was off doing other things.  The cancer did not spread to the brain.  They were also able to medically verify that I have a brain that it could have spread to.  Bonus on both!  I met another member of my medical team, although I'm pretty sure she worked with me briefly during my last treatment cycle.  My sisters went with me, and got a taste of how awesome Karmanos is.  They also got to meet most of the doctors and nurses that are part of Team Mink (I really need to figure out a better name.  I'm working on it).  So I'm very excited about the fact that we only have to deal with one location and that hopefully it will eventually mean that not only will treatment deal with the existing nodes, it will prevent any spreading.  At least that's what I'm hoping.  Even though my last MRI was made easier then others this time around, I still dislike them.  No girl my size should be shoved into a tube.  Although I really shouldn't be complaining.  My doc wrote it specifically as an open MRI.  So that and a Xanax got me through the procedure.  I figure one more after my first treatment, then every 6 months.  Another something to add to my new normal.


Tomorrow is my lung biopsy, which doesn't sound scary at all!  I understand why it needs to be done.  While my docs are 98% sure that this is melanoma of the lung, if they can safely confirm that, it would be the best thing all around.  That there is a 2% chance it is the other lung cancer (lung cancers?  Are there multiple lung cancers?) is scary.  Although why I think that it's not possible that it could be some other type of lung cancer, I'm not sure.  I have led the majority of my life as a virtual vampire.  I burn, so I don't like to hang out in the sun.  And yet here I am with Melanoma.  I suppose that it could be funny that the non-smoker ends up with a more traditional form of lung cancer.  I guess we shall see.

More to come...  Because this is really the story that just keeps giving.