Ranting update now

 All this happened before I had anything to eat in the morning so my mood was not the best.

So, the Sharp Transportation system is only open 8-4 pm Monday through Friday. So I called this morning and then it turns out, they only schedule 2 weeks in advance. They gave me a second number to call

FACT transport is a non medical transport and charges between $5 and $20 depending on the distance.  Non-medical meaning; he asked if I was going to be sedated for the procedure and I said yes, so then he says they aren't a medical transport and gave me two more numbers to call.

TLC Transportation I went on the website and as soon as I saw 'billing' I didn't bother with that one and moved on to SOL Transport.

Went through the website for SOL and inputted all my information, calculator for the trip said 0 cost for 2 ambulatory patients and round trip. Because Jon needs to be there when they discharge me for aftercare instructions. Poor guy is going to be cooling his heels for hours while I'm being worked on. Have to remind him to bring phone charger just in case.

Now... it says it was scheduled and am waiting for email confirmation though debating on whether to call the phone number as well just to be sure.

Oh yes and the procedure tomorrow has a $100 copay which is on top of the $75 copay from the ER and am hoping I get money tomorrow since last day of the month is on Sunday.

Then Radiology just called and wanted to schedule the breast ultrasound on my left side. Asked if tomorrow morning was good and I said no (my mental and time schedule is full for tomorrow) so next available for Mira Mesa is Monday...at 9 am and have to be there by 8:30. During prime morning traffic commute which means we have to leave here by 7:45 just to be sure since it's about a 30 minute trip. Hoping I'll be able to drive comfortably by then.

 

Okay... so called SOL and am confirmed for pick up, I put in 12:30 for my appointment so they'll be picking me up at 11:30 which means we get there around noon for a 1pm check in. Getting an automated confirmation call later today. Better early than late for sure.

They say to wear 'comfortable clothing' when it won't matter what you're wearing for the actual procedure but I guess it's all for the best. I am thankful for the second hand sweatpants and plethora of large t shirts and button up Hawaiian style shirts. Because it is now definitely cooling down with overcast skies and may not get any higher than mid to high 70's for the next week.

Woof.... good lord.
 

A small update and information

 Got two 'Authorization Notification' documents regarding the bone biopsy and then a second one for doing genetic counseling/testing.

'See sock Sea Serpent'(my name for it) is an absolute favorite of mine from Ursula Vernon. It is silly and yet kind of where I'm at. Suddenly something frightening appears and it's attached to me! Kind of like 'the call is coming from inside the house'.

I then got a call from my surgeon Dr. K to let me know about the results of the MRI. The spot in my right breast is not very deep but seems to get close to the implant capsule and is about an inch across. That's huge in my mind and as far as that is concerned, surgery is the way to go to remove it and then that involves digging out the implant capsule and reaming me out again and then putting another expander in 'if I choose that route'. They also saw another spot on my left breast but comparing it to the size in 2010 it hadn't grown much so that's a good sign. He asked if the bone biopsy had been scheduled and I told him no but I got notification that it was ordered. They've been authorized to move forward with ordering more scans/tests and what else. If I remember what he said about the genetic testing it's a blood test to look for specific markers for cancer that would be important for family to know. I didn't have it before because it was a new diagnosis, now that it's a repeat they want to see if it's a genetic thing or whatever and also will send information if it's positive to children and grandchildren if necessary.

Update even as I was typing. Phone call from Radiology to schedule the biopsy ASAP. First available is this Friday and I chose the afternoon check in at 1 with procedure at 3. So making contact with Amber and if not available I have a phone call for shuttle service. This is technically 'outpatient surgery' which is why it is such a long process. Will look at the information they just sent me, no food 8 hours before the procedure yada yada.... ::whimper::

So. That's the scoop so far. 

I am shopping for bras and it is really frustrating because my previous ones I bought like six years ago and being the only two I have were worn A LOT more than typical. I of course can't find that particular model and don't remember what brand or type I had before that was front opening. Finding a front opening that isn't 'post surgery' and doesn't have 8 hooks down the front is an issue. I somehow remember having one that was a 'bathing suit' type hook not metal but the flat plastic kind. I may be imagining things on that one though. Target and Walmart are a wash, so little to choose from that isn't underwire, isn't 'over the shoulder boulder holders that have wide straps and I saw very few of the 'itty bitty titty committee' size. I also do not want to pay $25-$35 for one bra when I need at least two. Don't need sexy lacy look either, I am so dang practical I just need something that fits and supports. 

Off I go to mentally prepare for everything.

"Being brave doesn't necessitate that you feel strong. It only requires willingness to keep going, even though you fear."  Christi Brown

One down, a few more to go.

 As scans go I think this one was the most uncomfortable. MRI's as a general rule are noisy as a construction site and they give you foam ear plugs and a headset to 'listen to music'. Let me tell you...... not helpful at all.

Luckily my vertigo is all but dissipated by now so the prone position on my stomach wasn't an issue for that. Just had to stand up slow and not like a spring loaded jack in the box. The IV port for the contrast wasn't as bad as the ER but not as smooth as the previous IV for the PET. I am thankful my veins are still in good working condition to save more pain and frustration. 

The amount of noise that the machine makes completely cancelled out the 'meditation' music I had requested. So there I was, with my face in a vaguely padded cradle and my boobs hanging into two areas just for them but the plastic edge kind of dug into my rib cage and the padding was not sufficient for my forehead after about fifteen minutes. What is kind of laughable is you're laying there with your eyes closed, no way of telling time and they say, 'okay starting the contrast so another sixteen minutes or so'. My smart ass brain tried to respond but told her 'never mind' and I saved it for when we were done. 'Time is irrelevant when your eyes are closed'. She said well, we like to let people know just so they don't worry.

I guess there are much more anxious people that get scans and I suppose it helps but they might as well have just said 'a bit longer now almost done' and it would have been just as good. She also said that when the contrast goes in I have to lie completely still. Like I wasn't before? What choice do I have? They give you a bulb thing to squeeze if you have 'an emergency' so they can hit the cut off switch. But again, there are people out there that likely have severe claustrophobia that would have problems. I did have a nanosecond of a worry in case I forgot something that may have been metal in my body, like fillings and stuff (fillings obviously are not magnetic).

So that's all done and next appointment is June 3 with Radiation Oncology doctor Croix Fossum. Fascinating name and that will be over at Grossmont. You may wonder why I'm being so specific writing all this down and it is for future reference. I told someone, nurse or coordinator or someone that I kept a blog journal online last time and she was impressed because most of the time the only records they have are what they've done and noted down and have to rely on the memory of the patient. So I was able to go back through my entries and give her a better approximation of dates and my reactions. Now they have all the clinical records of what doctors and when and all that. The point is that as a patient, I was keeping my own records of sorts to keep things straight in my head.

This is also for my kids and family to look at and see what was going through my head. Lord willing and the creek don't rise, I'll make it through this time as well. There is a niggling doubt that this is my sunset time and am preparing for that.

Doctor and scan appointments coming fast

 Didn't sleep very well last night, it was too warm and was tired but couldn't get to sleep well. Tried to lay as prone as possible but after about five minutes couldn't stand it anymore so propped up the pillows as best I could. After only two hours and waking up twice to the feeling I was suffocating/choking had to rearrange pillows again and sit up more. I was probably snoring but have also noticed my eustacian tube area and ears are being funky. One thing that the doctor said in his notes after the consult was that my thyroid seemed to be enlarged. You may not remember the first time I had cancer when they did the MRI they said it was likely a water cyst, a year later and it was cancer. I am now thinking that the nodes on my thyroid are likely that situation as well. I'm also not wearing either of my bras because they are in such ratty condition they're useless. The divot in my right breast has indeed been 'oozing' I just never noticed it because it was likely getting caked over wearing a bra. So I'm putting neosporin and a bandaid on it now and it is looking better around the edges. There was a red ring around the area and since it's going away I am assuming that was from the biopsy. 

 (ducks...docs...got it?)

Got a call from imaging for my breast MRI and they had an opening for tomorrow (Saturday!) in the afternoon at the Santee location thankfully! That will save on gas for sure. I just now got a call from my primary doctor for the ER follow up which the only opening is June 18, all well and good really since I'll likely be back to normal by then. Right? She's likely in the loop about everything going on but I need to ask someone about my cataract consult at the end of the month and whether that is going to be delayed/postponed indefinitely.

I am so eternally grateful going through all this with an incredible interface between the doctors and the web app. No sooner do I get off the phone and get a notification there's a message for me on the app. No more having to hand enter appointments and doctor notes on a calendar or keeping track of it on my phone, it's all there. I get reminded a week before an appointment to do a pre-check in and make sure everything is up to date. 

Wanted to also add some things that were in the doctor notes that have me particularly anxious.

"The top priority now is to determine if she has distant metastatic disease. Based on her PET/CT results, I have ordered a CT-guided biopsy of the lesion in the right iliac bone. If she has stage 4 disease, she will need systemic therapy. If disease is determined to be localized to the skin of the right chest wall, she will need a wide excision, explantation of the existing implant, placement of a tissue expander (if she so desires) and XRT."

Iliac is the big wing shape hip bone and the systemic therapy could be chemo and he said he hoped that will just melt everything away, XRT is radiation treatment so with my luck as bad as this sounds, I will be sick as a dog for months and likely be on pill treatment for the remainder of my life (however long that may be). 

Have not gotten any call about the biopsy yet and when I do I will send out a 'call' for transportation help. It's close to the end of the school year so hoping that Amber will be able to help out but if not, will ask within Sharp if there is a transport company they contract with for doing that.

If people who follow this blog could message me to make sure it's getting through please? If I don't hear from anyone I'll change it so it goes out through an email list.

Funny note: When we went to get my foot x-rayed and Jon was letting me lean on him I had to say it in a southern accent: 'Thank you for your support'. If you know, you know. He had to stop walking and lean on one of the posts he was laughing so hard.

"Of all the things at risk, the loss of an objective reality is perhaps the most dangerous." - Andor S2, Mon Mothma's speech.

 

Physically about 90% mentally.....

Got to meet my surgeon and am satisfied with his manners, explanations and all that. That's the good news, bad news is... the full trunk PET scan found some other 'hot spots' in lymph nodes in my neck and another on my right hip.

So, this means that the process is extended a bit because they want to do an MRI of my breast area and do a biopsy of the hip. Dr. Krishnamoorthy (sp close enough) is my surgeon and he contacted all my other 'team' so everyone is on the same page. He actually called me after we got home to update me on the MRI decision. He doesn't think they'd be able to do my brain and the breast on the same day so this is going to be taxing on my gas. The hip biopsy will not be too invasive since it's outpatient but I won't be able to drive since they'll give me sedation to do it. He didn't say what kind of sedation but if I can't drive... could be 'twilight' type but he said they'd want to do a 'CT guided' version. 

He seems to feel that since they basically scooped out everything on the breast it's not a matter of them 'missing a spot' but that like most cancer, just one cell could sit there dormant for years like with me and then decide to pop up. There isn't a whole lot of tissue for it to grow on and if they end up having to take out another chunk of the skin they would do that, take the 'pocket' where the implant is out, put in an expander and let that all heal before considering putting the implant back in because of risk of infection. I did discover that he was familiar with my previous surgeon and the plastic surgeon that I had last time now works for them with his partner. I told him that I wasn't happy with the way my breasts turned out and he totally understood that and if I wanted I could be referred to the other. 

It is refreshing though that since I had the last procedures done with Sharp, he knew of all three of the doctors (other than the gall bladder surgeon I couldn't remember) and also said that they all missed Dr. Mira (my previous oncologist). I mentioned to his assistant that it was odd I was seeing the surgeon first and then radiation then oncology and she said there is no real order to it. Well as long as they're all communicating and everyone is on page, I'm good with that. There is a possibility of having everything this time, surgery, chemo and radiation. It depends on how the MRI and chemo go, just a lot of 'wait and see' for biopsy and all that.

So, much rougher time this go around. not exactly what I had planned for the rest of my life.

"Sure, not every day will be good, but there will always be something good about every day. Notice these things and celebrate them. Train your mind to see what's right. Positivity is a choice."
 

Doing much better today than Monday

 Still not 100% but well enough to drive so I could get bread and dramamine. Yep, that was what they prescribed, meclazine aka Dramamine. I now realzie that was why I was still feeling out of it yesterday and had to actually take a nap. I even noted to myself how it felt like I had just woken up from anesthesia kind of groggy. I'm good to drive at least so that's an improvement but my eyes still can't seem to focus as well as before.

So still have to move slow but not at a snail crawl, turn my whole body not just my head and still can't lay flat or on my side and have to be careful bending over. I slept better last night but ended up propped on my elbows for a good part of it so that was uncomfortable in the morning. If I don't take the Dramamine I'll be fine by the end of the weekend, by 'fine' I'll say at least 90-99% better.

Even doctors don't know why things like this happen and that's really frustrating as well. If there was a way of finding a common instance, blowing your nose too hard or something it would be easier to figure out. Maybe it's all the ice chewing I've been doing? Since at least three other people I know have had this before I feel a bit better it's not a sign of imminent death or disease. 

Just had to transfer $2 from the joint account to the main account to pay for parking tomorrow. Leaving me with literal pocket change in both accounts by the weekend. Once I get back to 'mostly normal' it will be time for all the things to happen for cancer treatment. 

I really wanted to start getting into shape by now with walking and stuff but nooooo, the fates had something else in mind when I voiced my plans. First my knee, then my foot, now this and then cancer treatment and possible surgery.... just can't catch a break. Well figuratively because physically, already did that.

“May God stand between you and harm, in all the empty places you must walk.”

 

Benign Positional Vertigo

 At least that's what I'm calling it after I spoke with Talub. Spent about four hours in the ER, thanks to Amber for the ride and support from Jon because no one should be in the ER alone.

EKG, CT scan of brain and multiple vials of blood taken and tested (they must have used a turkey baster size needle for that draw, I've got a bruise).  

Triage nurse and doctor saw me right away but there were a lot of people in the waiting room so that made me feel kind of special. Did the preliminary questions and tests for stroke and heart attack, all negative (tracking fingers with eyes, no loss of feeling in arms or legs, that sort of stuff). BP, heart and temp were all good. 

CT scan was not much different than the PET scan and I remembered last minute to take post earrings out, wasn't wearing my watch, took off my glasses ... rumble rumble on table, ring going over and back again, took all of a minute or so. They gave me an anti-vertigo pill around 10:30 and frankly, didn't notice much difference other than feeling less nauseous and could walk a bit better but still light headed and fuzzy brained. I had to try and sleep/rest sitting almost straight up last night which I didn't not want to do. I wanted to lay down and just crash out. As soon as I did that though, everything was spinning and had to sit up or lose my stomach contents. Even now I can't lean my  head side to side but can turn my head as long as I move carefully. So upright and vertical sitting is okay but it does not make for restful sleep.

CT scan results, everything normal BUT... there was a small 1.1cm 'attenuated mass' on the right temporal lobe, doctor didn't see that it was attached to the brain, it didn't seem to be what was causing the vertigo and may well be on the membrane covering of the brain. I messaged my doctor about getting an MRI done as the ER doctor had advised. She didn't think it was cancer and meningioma(sp?) do happen and are not life threatening. But this puts another level of tests and anxiety on everything else going on.

So the kicker is, the med they gave me will reduce the feeling of vertigo but it can also make you drowsy so not supposed to drive or operate things when I take it. I can't drive now anyway because of the vertigo so that means I can't even go get the meds that are supposed to help.

So that's it, what is interesting is the left side of my face now, mostly my cataract eye is being a bit slower and as we all know the right side of the brain controls the opposite side of the body which is why left handed people are always in their right mind.

Thanks for the message Talib, will see about talking tomorrow. I have an appointment with the surgeon on Thursday, Oncology Radiology on the 28th and who knows what else in between all that. MRI will likely be in Mira Mesa so now have to contact someone in Sharp or Medicare for transportation.

Sigh.

The hits keep on coming.