Good news gone...

 Got up at 5 am today for my 7:40 check in at Santee radiology and my left breast biopsy.... got all our things together for the trip downtown for the No King protest/rally/march that starts at 10. 

Got in the car, turned on but only clicked..... clicking only. Lights are on but no engine start. 

This is bad, very bad, not good. Go back upstairs with all our things, and because it is before 8 am AND on a Saturday, all numbers are in weekend mode for contacting medical office. Quick search on the internet and car has a starter issue. Which is very expensive and which I have no money for.

Radiology did call me and I told them what happened.. quick consult off the phone for her and she called back saying I'll have to call the main radiology number to reschedule the appointment. She was very understanding and wished me luck. 

So, that brings us to trekking downtown which was not much different than if I had a car. We just had to hustle back downstairs and to the bus stop closest to us to get to the trolley station.

We wore our Star Wars accented overwear, I chose my vest because I knew, despite it being nippy and marine layer in the morning, it was going to be warm later. I almost lost three of my pins and finally took them all off and put them in my backpack I thought to bring instead of my plastic 'shopping' project bag.

The two block walk from the trolley station to the gathering point of the protest. From where this was taken, it is about a block to where that brown building is. There is a slow river of people coming from that cross street from another location and just before the tree on the right side is the corner we would turn at. It was packed... seriously. Not hundreds, not thousands, but almost 50, 000 from the count I saw for the 50501 group. More solid numbers will be uploaded over the next few days

The obligatory Handmaiden that seemed to be the only one but we didn't travel around much with the crowd. A lot of the signs were very creative and I had to get a picture of this one. 'No Empire' symbon on one side and the other you'll have to zoom in on but it is a Tesla 'AT-AT' from the Hoth battle in Empire Strikes Back being taken down by the snowspeeder rope. I  made a very crude sign but with the car problem and being in a rush never really got it on a stick but we had our small American flags.

I took more videos than still photos because the sound was chanting at one point a few times of different things, just crowd sounds and overall people were positive, very few rude ones that we could see, doggos of different kinds, little kids... all with the same mind of peaceful protesting and making our voices heard.

Jon is now napping because his claustrophobia was tested very hard on the trolley ride home. We felt part of something that was important but I realized that we were all there for the same reason. There was nothing and no body that seemed out of place. But again, we didn't mingle a whole lot and after being there for maybe an hour, we were ready to head home given the amount of travel time involved. 

 

 

And another point of good news

 With all the information in so far, they don't feel the need for chemo. Dr Moeller says that they reserve chemo for fast growing or aggressive cancers, especially breast cancer and with the changes and new knowledge from research in breast cancer treatment, recurring non-metastic it is not a go to treatment. She said 15 years ago, yes that was standard. So that's a relief, and a minor disappointment, was looking forward to working on some knitting projects. (Just kidding) Course of treatment since it is skin level is surgery and radiation, with a follow up of hormone 'inhibitor' much like I was taking before. Dr. Moeller said that we shouldn't meet again until after my surgery is healed and all that to start that regimen.

So, right now we are waiting for the left breast biopsy which will be happening on Saturday  not the 26th as an opening came up and since I have other plans for the rest of that day, I chose an 8 am appointment and it's local at the Santee offices. YAY!Boo to waking up at 6 am but it's going to be an interesting day for sure.

So among other things I got the blood draw for looking at genetic markers specifically for breast cancer. That was an interesting chat with the genetic counselor who gave me all kinds of basic biology of what they look for in the DNA and other things they could look for. Bad news is, it may cost me as much as 100 and possibly more to have the tests done. Were they necessary? Yes, for the sake of my children and their children and furthering cancer research. They will let me know if it costs more than $100 and work with me if it is needed.

That test takes a week to ten days, then there's the biopsy that needs to be studied so that's another four or five days. Then an ultrasound/possible biopsy on lymph nodes in my neck but she said (after feeling my neck) she didn't feel anything because they were so tiny. If they're too small, they won't do a biopsy and maybe do an MRI with tracer to see them better. My estimate is surgery may be slated as early as the end of the month to beginning of July.

So that's it for now, adventures in finding the right building where my doctor was but now I know. There's a whoooollle lot of construction going on in the hospital complex area which is fouling up traffic and known throughways. 

HUGE SIGH OF RELIEF update

 Met with my radiation oncologist, a very young man named Dr. Fossum. Very good manners, made eye contact with both of us, all the hallmarks of a 'new doctor'. When I mentioned that we were surprised at how young he was, he said he was going to be 36 soon. Such a baby! But he's a good doctor, I think we'll keep him. His nurse assistants name is Nina and also falls in with the wonderful care and attention that this hospital is known for.

Well, aside from getting an idea of what will be involved, from what he could see of the biopsy sample from my bone, it looks more like a lymphoma than 'breast cancer that's spread'. 'Highly suspicious for low grade folicular lymphoma' is the official note. And no evidence of metastatic carcinoma. ::huge sigh of relief!:: Two more tests are still pending but I think those are more 'detail' oriented rather than anything else descriptive of the type. It's so cool that I can see the actual medical terminology and descriptions with our newfangled technology.

In his opinion if it weren't for me having cancer already and from before, the spot on my left breast they would 'keep an eye on' rather than treat and he seemed to think (in a gesture and expression) that getting a biopsy is a bit overkill. Even if I do chemo, because of all the different spots that have shown up the right breast is the most concerning and it's in the skin layers since there's no tissue left. It's not in the chest wall or had spread anywhere else.

So that was a big relief but still kind of on edge given what is involved with the radiation therapy that is the course of action. Four to six weeks of daily (5 days a week) targeted radiation on my breast after surgery and possibly after chemo. I am now confused because he then said it would be on Tuesdays because that's when he would be there. He mentioned every Tuesday so I will have to revisit that conversation later. That is what he is recommending and will see what the rest of my team says because they just want to make sure everything is dead. I will be seeing my oncologist in a week and she will have all the notes and ideas and recommendations from all the others to present a plan of attack.

I'm thankful that at least half of my doctors are close to me, which includes the cancer center I would be getting the radiation therapy at. I'm not sure about the chemo just yet but that will be known after seeing my oncologist. I wonder if they have zoom meetings to talk about patients or it's all just emails?

That has been on my mind and a major worry more than I admitted to myself. As I have said, prepare for the worst and hope for the best usually turns around the dread and bad juju. 

We made a costco run after the appointment which was interesting in itself. Ordered two slices of pizza and two drinks but in the process of trying to juggle that turning away from the window, they slid out of my hands and landed on the pavement. I yelled out a very loud FUCK!  and didn't really care who heard. I got two more pieces then went to where Jon was sitting. He said he was sitting there and people were milling around then he heard that loud expletive and thought, 'I know that voice' and turned around to see what happened.

Love that man but sometimes... he's too New York when dealing with people. That's for another day though.

"Winds in the east, there's a mist coming in, like something is brewin' and 'bout to begin."   

"Can't put me finger on what lies in store, But I feel what's to happen all happened before,"

Procedure #3? or 4?- The easiest one so far

 

 (I entered everyone's email that I thought would be interested in getting these updates. If you have gotten email notifications, please please please contact me either by email or phone messaging. If I don't hear from anyone I will assume that the emails were incorrect or I'm just talking to myself here).

Today was just an ultrasound on the cleavage side of left breast. Nurse tech showed it to the doctor on site and consensus was it hadn't grown *that* much but due to everything else happening (aka 'my history'), they're going to do a biopsy on that one too.

Even traffic was not a problem getting to Mira Mesa and back even at almost 9 am. Only problem was discovering I needed gas before I headed all the way back home. Had to pay 4.79/gal at a shell station and since I was only down about an eighth tank twenty dollars got me up to half a tank. Will fill the rest of the way at Costco probably tomorrow.

At this rate, I am suspecting surgery will likely be next month. 

Since I prefer afternoon appointments the soonest available appointment was June 26, that sounded very familiar and remembered it was the cataract consult. I got online after I got home and cancelled that. Cancer is more important than eye surgery at this point. I knew when they scheduled that last year something would come up and would have to cancel. Almost a year out is way too far and have nothing happen in between. Tomorrow's appointment is with Radiology Oncology doctor at Grossmont with Dr. Fossum. Since we'll be in the area of Costco, it's a drop kick to do shopping after the appointment which is at 1:15.

In good news, I finally found a bra that fits! It's only a little loose on the shoulders but it's comfy and will do for now. No wires, t-shirt fabric but some support so I'm good for a while. Food money is being spent, rent check is dropped off, with the money that we had to pay for medical expenses, going to be short on bills this month for sure. 

Weather is warming up consistently now, it was dead calm and overcast yesterday, now breezy and hazy today and mid to high temps. Will be posting on garden blog later with ruminations on that endeavor.

As a person with a life altering situation happening that may not end up very well, I've been doing a lot of thinking about the important things in life. Who and what I will leave behind and how it will all be managed. It is a difficult topic to bring up with family and just thinking about it makes me choke up and cry. I have regrets of course, but nothing that could have been changed or be fixed or finished in the future. Knitting projects like crazy that are not finished, mountains of things from a lifetime in storage that will not be needed any longer. I 'm cataloguing all that of course in a future blog.

When you spend a life acquiring things that make you happy, it is a transient happiness, as Jon says 'it feeds the soul'. But when you really take an objective look at it, they are things. They are only worth money if you sell them. They acquire dust and are not feeding your soul if they are boxed up and unseen. It's difficult for Jon to part with his collectibles and I made a foolish promise I would not force him to throw things away or give them up. He's going to have to face that hard fact that things aren't as important as food and a roof over your head. I was never a really big collector of things, I had a horse model collection but I played with those, I have my 'antique/vintage' doll collection that is worthless now due to mildew getting on them years ago. I collected craft things because they were being used at the time but as far as collecting memorabilia and figures and cards, never really got into that. Even back years ago I always thought it was silly to have something and say 'this is worth X dollars!' my response has always been, it's only worth that if someone wants to buy it for that much. It's worth nothing sitting on a shelf or hanging on a wall.

Value is only placed on things when someone feels it has worth in exchange for money. Life and caring and taking care of the person or people close to you is what is worth something.

It is done....

Edited to add more details on what happened.

First was the transportation issues. Apparently the company I contacted yesterday.... 'maybe it wasn't the same company'? It was getting close to noon and I still hadn't been contacted by the Sol people so I called the number and connected with dispatch. Apparently he had no record of me calling, making a reservation or anything. I told him I called this number yesterday and a female that answered my call confirmed that I was in the schedule. He had no record of it. 

So Jon and I scrambled looking through listings for taxis, uber and lyft, senior transportation... took a good half hour with me on negative calories and no caffeine and we finally settled on lyft. Reasonable price and it got here within five minutes. The gentleman that was driving was amiable, a local mobile home seller and had a sweet prius prime car. So we'll be requesting him in the future. Return trip was a female Hispanic driver that didn't speak English. Luckily Jon spoke to her, thanked her for the ride and all that. 

Now, as for how my afternoon went. Typical check in, form to fill out, wait to be called and all that. The staff for Sharp are just amazing, I have not had any issues with their nursing or doctors. The only thing that was even slightly annoying was having to sit in the 'pre-op' cubicle whatever for over an hour but the chair wasn't too uncomfortable and I had one of the cotton blankets so considering I needed a nap after waking up at 5, time well spent. 

None of the nurses knew just what part of my hip was going to be sampled and it isn't the hip joint, rather the saddle shaped bones of your actual hip. Turns out, least favorable spot, the back side. I had an IV port in the back of my hand this time (small favors thankfully) nurse who did that was an amiable young guy and he told he was going to use a pad to clean and numb the area before he injected lidocaine before putting the actual IV in. that was new to me and told him so. He was shocked but then I had to tell him the last time I had a long term IV in was over fifteen years ago. All the nurses that I told about the different experiences recently with the ER blood draw using a 'turkey baster' to the painless and simple one for the PET scan. They all agreed ER blood draws were the worse. 

The lidocaine local hurt of course and both nurses that were at my head stroked my arms to try and comfort me which was nice. I had clenched my right hand one the nurse on that side put her hand in mine to squeeze. I have never felt so attended and cared about in a medical situation they are all getting high marks from me. Whatever they use for just 'relaxing' you for procedures like this... I want some The nickname is 'twilight' last I heard and they gave me a little while they did the initial ct scan and then after the doctor looked at things and they were ready to proceed gave me another half dose. If it weren't for having something pushed and prodded and loud noises I would have fallen asleep even if I was on my stomach. Made the nurses giggle when they asked how I was doing and I groggily (a bit exaggerated) said, 'I'm fiiiine' and grinned a bit. I really felt like I couldn't move but they wanted me to roll over onto the gurney and I suppose I did better than they expected. I recall that the nurse said the doctor's name was Smith, he never introduced himself and I was face down so couldn't even look up well enough to see him.

After they wheeled me to the recovery bay (not really a room, you know how they're just a curtained off area) Jon was escorted back to where I was asked if we wanted a snack, I really only wanted some cold water, he asked for coffee (not a fan, it was hospital coffee after all) and then the nurse said they had jello I asked what color and she had red and orange. I said quickly, 'orange!'. If Hint water was in jello form, that would be the flavor. Nurse gave us a few minutes then returned, checked my vitals, was hooked up to automatic BP and oxymeter on my opposite hand. I kind of had my eyes closed and was still relaxing so she was directing most of the instructions to him.  We chatted with the nurse about getting food afterward and Jon wanted Greek Chicken gyros and one of the male nurses did a double take and apparently approved. 

Fast forward to getting ride home, already went into that so we did end up getting gyros against doctors orders not to drive. I felt capable and aware enough to do it safely. So stomachs are full, butt area is uncomfortable but manageable and I don't foresee any problems sleeping tonight. All in all, it was annoying for transportation but other than that, what you would expect from a minimally invasive procedure. 

Now we wait for results. 

"I hope that while so many people are out smelling the flowers, someone is taking the time to plant some."
  - Herbert Rappaport

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