...weeping may endure for a night, but joy cometh in the morning. -Psalms 30:5

Friday night I wasn't feeling very well with an annoying headache and my shoulder was very painful. (Not from the port itself, but from being overly careful with it because of the surgery). I took some medication and it seemed to subside enough to sit up with the family before bedtime. I went to bed a little earlier than everyone else. When Jeff came to bed I was just waking up and realized the headache wasn't gone. It got SO much worse in the next few minutes. I have had this about 2 or 3 other times before. It was excruciating! I am so sorry for anyone who suffers from regular migraines. I do get bad headaches every once in a while -maybe once a month at the most, but this is nothing like it. I wanted my head chopped off. I just couldn't get comfortable. Jeff called my sister-in-law, Suzy, who is a pharmacist to make sure what dose of meds I could safely take. The pain went on for about an hour or more. Poor Jeff wasn't sure what to do for me. He did give me a blessing, got me ice, rubbed my back and held my hand. When it got a little better, I tried to go back to bed, but it started back when I lay flat. Finally it did go down enough I was able to go to sleep.

Joy actually did come in the morning! I felt better-just a little lingering thought of some pain, but by noon, that was gone so I was able to help with the family house cleaning and have a regular day. I was thinking on this this morning that it is kind of a reminder to me that "this too shall pass". My coming treatment might be horrible, but it will end. If I do all I can to fight what is happening in my body, in the end I will feel better, be better and much stronger.

On the Homefront.... This morning we have rain! The air is clean and hopefully this is happening all around the region to stop the wildfires. It looked like it was raining west and east of us yesterday, so this is great news. Our fasting and prayers have been answered.

On a Clear Day

We have skipped town. Saturday, I realized that I had appointments Monday and Tuesday and nothing for the rest of the week. Unless of course they wanted to actually start the chemo. Tuesday morning I got a call from Dr. Sri and she said that my CT and bone came back completely clean!!! I was of course excited to hear that, but didn't do a dance or anything. When I told both Jeff and my mom, they heaved a huge sigh of relief! I guess I have just turned off all types of emotional dials- not only am I not overly worried and anxious about what bad can happen, I am also not overly demonstrative about the good that is happening. I am happy as can be inside and relieved with the news. Haven't heard about the brain MRI.

Monday was the bone scan and I had to go in at 9:00 to get the dye injection. When I mentioned to the technician about "my children" he got a worried look and said "If it were me, I wouldn't snuggle with them tonight for a movie night".  The injection was a radioactive dye and made me a walking hazardous material specimen. I said something to A and she kept a 6 foot radius away from me all day. We went to the mall while I waited for the dye to soak into all my bones. We got some school shopping done and A got her haircut. The scan wasn't too bad, just flat in a table and a large screen came down to within an inch of my face, then slowly moved down from head to toe. It took 20 minutes for it to complete the process. We had Taco Bell.....again for lunch.

Tuesday, I had to go into the hospital again for the brain MRI. That was horrible! The breast MRI was nothing to this. For that, I was wheeled in face down, feet first and got headphones with music that somewhat blocked out the noise of the machine. For the head, I was put in a 'Man in The Iron Mask' type thing -the head put in something on the table and the mask put over my face. I was given ear plugs, but they did nothing. I was wheeled in head first so I was completely in the tube. The noise was so loud. Clicks and beeps and buzzes for 30 minutes straight. As soon as that was over, we headed out of town.

My mom drove first, then I took over the the last half of the drive. Of course as soon as I started driving, I get some phone calls I'd been expecting. First one was from the oncology scheduler asking if I could come in this Thursday (now yesterday) for my appointment with Dr. Sri to go over treatment schedule and then to start chemo. Since I had gone out of town, that is now scheduled for Thursday morning this next week.

The last week and a half, except for one day, we have been down wind from all the wildfires in Central Washington. Some of the days have been so bad that we have been warned not to go outside for extended amounts of time. The quality air number being over 150. 150-200 is the highest rating. It was nice to drive over the Pass and get into clear skies and clean air. We got our lungs cleared out and came home today - Friday. It was good to visit with some good friends and family. I got to celebrate Becky's birthday with her a few days late. We got our new car and drove that home. The girls love that it has a dvd player, roll down back windows and back air control. I need to plot out my next few days so I can get a handle on the house, make sure I have all my supplies that I want/need and gear up for my first round in 6 days! YIKES!!!! I am ready to start with the thought that it puts me that much closer to the end of all this. I feel like I have been preparing for all this for about 5 years - it hasn't even been 2 months.

SCANning the horizon

At first I started this whole 'journey' with the attitude of  "There is no rush as there won't be anything to find, and it will be over quickly". Then one day in speaking with one of the many people working on my case (ie: doctor, scheduler or nurse), I got the frantic attitude of "Wow, things are serious and moving along and need to get done." After Dr. Moline told my mom that this is an emotional emergency vs. a medical emergency, I have been able to adjust my attitude to "OK, I want to get things done, but I am not going to put my life on hold." 

I do have the luxury of not being on a schedule set by outside influences. We have had a pretty unscheduled summer - we have gone back to Snoqualmie a few times for some fun stuff that happened back there. Jeff has been busy with work, but we have taken some time for family things. I won't say it's been a boring summer, but it has definitely not been full of going from this activity to that all summer long.

My dad was going to come here today to bring our car and then take Mother home depending on what my treatment schedule was looking like. I kind of got frustrated last week that I have not been told when my treatments will start. I need to know things. At one point I was told they might start as early as the day after the port was put in. But then we have to take into account insurance authorizing each little step along the way. It took a while for the doctors to fight to get the PET-PEM scan, but that was not successful. So the next step was to authorize 3 other scans and then schedule them. I had the body CT scan on Friday. They were able to use the port for the IV injection. That was interesting. There is some numbing cream that I need to put on the area of skin on top of the port. By the time I get to the office, it will be nice and numb. The nurse will then be able to insert the needle of the IV hook-up right into the port which is under the skin. 

Yesterday, I was realizing that with what the doctor said about timing and that I have my other 2 scans scheduled for Monday (bone scan) and Tuesday (Brain MRI), I kind of am in charge of the rest of my week. So the girls and I are going to Snoqualmie with Mother Tuesday-the weekend. My reasoning is that the doctor has to read all the scans when they are in which won't be until Tuesday afternoon at the earliest. So then I have to make an appointment with her to plan out my treatment schedule, I probably won't hear from them until Wednesday at the earliest to schedule that appointment. By that time, I will be able to tell them I am available anytime the following week for that and for starting chemo. 

I am still feeling pretty good. Getting this port put in has been a big step in the progress towards the goal to get chemo started. It makes it all a little more real. At the CT scan the other day, I went in to the office just off the waiting room. In there are a bunch of hats, scarves, wigs, brochures and cookbooks and the like that are available free of charge to anyone who needs them. I found a few hats. I may go back in for a different style hair wig - I think Joanne's is just the same color as what I have and very similar cut to what I normally do. We shall see what I come up with feeling comfortable doing. There are tons of resources for patients such as myself. I took a couple days recovering from the port surgery. I keep getting the feeling of heartburn in my shoulder. It is just a pain, not really shoulder-bone pain, but just a pain. It does feel better, the 'wounds' healing up nicely. Other than that I am sleeping well, feeling well and feel like I have a pretty good out-look about the whole thing. I am going to up date my post about "The Little Things" with gifts and things I am getting - so I have them all in one place. 

imPORTant things

I just couldn't stay up last night any longer. There were a few things I wanted to add about yesterday. I was actually home quite early as the surgery was at 8:45. Mother and I came home. Daddy had left to go back home and his responsibilities there. He drove his "new" (Jeff's old) car. He is taking that to Becky's and switching with our new car - it isn't legally ours as we are waiting for a check from the bank for that. He will drive that here when he comes to get Mother.

I feel like them coming here was a waste of time - in some ways - but was good in others. Yes, I needed someone to be with me on my surgery day, but I am not really that limited, and what I am limited in doing can be put off for a couple days until I or Jeff can get to them. The girls are being helpful. If I had known what this week would have been like I would have told them to stay home now and come later - if it was a choice between this week and my first week of chemo for sure. It has been nice to have them - always is. And it was good for Mother to be at that class with me and also to meet Dr. Moline and hear what she had to say. But it looks like she will be staying through my chemo time -----whenever that ends up being......

Dr. Moline came in after surgery to let me know how things went. She said "I didn't know you are LDS." Turns out she is - and when she said that I seem to remember someone telling me they thought she was. Everything went well with the surgery except that they had to put it on the right side instead of the left. I guess I wrote that last night. I was sent home after I could eat something and get up without being lightheaded.

Dr. Moline told my mom as she was going out into the waiting room and they were wheeling me away from prep something that is enlightening. She said "Remember, this cancer has been growing for a long time. This is not a medical emergency - we can start things now or in two weeks, it won't make much difference. This IS a mental emergency. Waiting is not fun."

We spent the rest of the day just resting. When D left (about an hour before we got home), the girls went over to the neighbor's. Lavena also picked A and her friend A (the neighbor girl) up to take them to the Activity Day activity. We were sitting here reading, etc. after I texted Rachel that we were home, when there was a knock at the door. Here was N with a huge bouquet of flowers and Rachel bringing a dinner to put in the freezer. She knew we had dinner being brought by someone else, but she brought that to use when we need something last minute. She took N back and had A stay there too when they got back from the activity. I took a nap, and just wandered around or sat pretty much all day. I did have a lot of texts from people checking in on me. The girls all came over a little before Jeff got home and Rachel's girls wished me well and then went home after we chatted for a few minutes.

I went to the front door for something and noticed a box on the porch. It must have come before we got home. It was a box of sunshine from Suzy and family. It was full of all yellow things ("Not Pink") to brighten my day. Yellow scrubby, fingernail polish, gum, potato chips, socks (smiley face), lemon heads, sanitizer, sticky notes. It was a fun box overflowing with sunshine!

Then later in the day, Lavena and Luci brought us dinner. That was so nice and tasted so good! The girls helped clean up and we just ended up reading or I wrote here and did other correspondence. It was good to go to bed. My neck hurts when I am fully reclined, so that isn't the most comfortable position, but when I slept I slept well.

I am scheduled tomorrow for a CT scan, and on Monday for a full body bone scan. It was a little disconcerting to call the place for the CT scan and be greeted with "Nuclear Medicine office, may I help you?" I kind of like this 'take one day at a time' principle. I can't worry, change or get away from what is coming. But I can focus my energy on what I have right in front of me at this time and get through it. Then I am through it and I can put it behind me- then onto the next. It has helped me not get all worked up about what is out of my control. After I decided to do this, I read a book that Amanda got from the library. It is called "A Long Walk to Water". Very good about dealing with this day. Also based on a real person's experience.

Listing to Port

The Title is courtesy of Jeff.
FINALLY, something was actually accomplished today. If it weren't for all the cancer and bad stuff in me and the icky stuff they will be putting in me to get rid of the bad stuff I am actually enjoying this journey. There are so many angels in my path and they are all fun to talk to and get to know. My mom said if she has to have any other surgery she will come here just to be able to use the same anesthesiologist I had today. He was jovial and thorough. I had heard long ago that one should let an anesthesiologist know if you don't ever drink coffee or have caffeine. He said it wasn't a necessary bit of information. They base the strength and dosage on other factors, then fine tune it for each specific person. The nurse, Shera, was fun to talk with and explained everything really well. They don't just start poking you and doing things around you without letting you know why and what is happening. One test I had to do only because I am between the ages of 11-54 and female is a pregnancy test. I am NOT pregnant (phew)  not that I had even remotely thought that I might be.....

Dr. Moline came in to speak with me before the surgery. I had a list of questions, and she answered those first.
*Why was my pathology report saying it was "in situ" (which I thought meant contained) but also invasive? And that report said the cancer was stage I.
----The invasive was a later diagnosis based on the size of the tumor and the MRI results. I am considered Stage III - the benchmarks for that are: tumor size (5cm+); node status (infected); age/health (young/good); hormone receptors (triple +). Those have all been found out with tests along the way. 
*How do I care for the surgery site? Can I sleep on my side, swim, shower, etc without worry?
----The port is actually under the skin. It is accessed by a needle poke into the skin then into the surface of the port. 
*How come they aren't taking the nodes out - not to biopsy by because they are cancerous?
----The chemo is set to zap all the bad stuff. After that, we hope to have gotten everything, if not - on to the next step.
*Do cancer cells tend to target weaker spots in the body (ie: injuries, weak spots)?
----Cancer does what it wants, but sometimes might invade arthritis and weak bones specifically. That's why there is such a push to strengthen bones as much as possible. 

She then went on to tell me what she needed to discuss. Some of it was what she told me and Jeff over the phone Monday morning. It was nice to have that repeated and she does express herself with her hands, so that added nice emphasis. The MRI showed a small (not-to-be-concerned-about-but-watch) spot on the left breast that in and of itself they would keep an eye on over the course of time. Do they want to do something with that? Probably not. They hope it will be taken care of with the other treatments. If not, then we will take care of it later. She said "You probably won't have much faith in mammograms after going through what you are". Well, yes and no. My mother found hers with a mammogram and I know of others who have. I would NEVER advise anyone to miss a mammogram. In fact- GET ONE NOW! But add to that self-exams and don't let any questionable thing go un-reported. Mine was not found with a mammogram, and it never did show up on one even when they had something to look for - but that does not mean they aren't effective. - off of soapbox.

The doctor is not impressed with the waiting game that insurance makes you play. Also, that the doctors really, really want to use this PET-PEM scan as it is more effective and precise in it's reading. However, my - and lots of other- insurances don't cover it. So that is not going to happen. I am, instead, doing the next best things which are a CT scan and a full body bone scan. The bone scan is scheduled for Monday.

She marked me up for putting in the port. Because all of the cancer stuff is on the right side, they intended to put the port on the left side to keep it out of the way. However, the main artery in the neck is on the right - the left artery being smaller and joins the other one under the clavicle. My left vein (not unusually) is small, just barely twice the size as the port tube, so they had to put it on the right side to get it into a significantly larger vein. It had to be put up closer to the collar bone than they would have because of all the other stuff happening in the right breast. I will have this port in for about a year - since I will be receiving some kind of IV frequently for that length of time. (chemo and then Herceptin after that). The port is interesting - you can click here to see how it works and what it looks like. Nothing will show from the outside. Right now, I have two incision sites which when those heal, I won't need bandages or anything. I have a lump where the port is, but that is all that indicates it being there. I guess the port is about the size of a quarter (don't know how thick it is - my swollen spot feels like it is about an inch thick, but I doubt it is close to that at all!

I just took a pain pill, so I may wake up with my face on the keyboard. I am not in a huge amount of pain. My neck hurts when I swallow - not my throat, but my neck, just the same feeling. It feels like I have a stiff neck feeling, like I can't turn my head, but I have pretty good range of motion. I can move my arms without pain - just a little limited. I guess that is all. I may have more to add, but will do a part 2 thing if I am adding to this, not adding new stuff.

Tuesday waiting game

Yesterday was another respite day. I had a cancer class in the morning which was held at the center where I will be going to receive the chemo. It was very in depth about what my body will be going through. I don't know if they normally do it one on one, but there weren't any other patients in there with us. There are so many resources available to me as a cancer patient. Nutrition counseling, counseling for children whose family members who have cancer, etc. My class leader, Tracy, went over each step in detail She explained each possible side effect and some ways to combat those. Nausea used to be a more common complaint, but there are so many anti-nausea treatments that it is not as big a concern. However, I have been counseled to take any medication immediately and not 'tough' it out. Fatigue, mouth sores, neuropathy, achy bones, and of course hair loss, etc. Even though I knew all this, I feel better having heard what she had to say about it. We (Mother came with me) got a quick tour of the facility. There are nice, large recliners which the patient sits in during the treatment time. There are small, not comfortable looking chairs that anyone accompanying the patient can sit in. (glorified class/conference room chairs). I will be able to move around a little if I wish. The treatment time will be around 6+ hours. Joanne told me that she was sleepy and dozed most of her time. When I asked Tracy if that is normally the case, she said no. I can ask for a relaxation drug if I wish, but I should be able to read or do handwork or whatever. I just realized that won't work if I wear the cold packs on my hands. Tracy said she hadn't really seen people using cold packs, but she has heard the theory behind why I might want to do it. I don't want to take any chances on getting neuropathy.

I had not remembered the correct class start time, so Mother and I were there 1/2 hour early. It was good to gather thoughts and just talk. The only bad thing was that it put us that much later for breakfast. We went to Frank's Diner just a few miles from our house. It was GOOD! They had a half size serving available and it was perfect. If I had ordered the full size, I may have eaten more, but gone home feeling too full. The hash browns were the way I like them, and the omelet was perfectly done. They do a buttermilk biscuit, open it up and slather it with butter then brown in on the grill YUM!

The rest of the day was some laundry and answering a lot of texts and trying to read up on some stuff. Jeff's car didn't start on Sunday, so he had my car. Luckily Mother and Daddy were here so we had their car on hand for all the places I have to go. We had been thinking of this anyway, but we decided to give Jeff's car to them since we are getting a new(er) car - buying Becky's car. D took the car to the repair shop literally across the street to have it checked. He decided it was worth repairing it (new battery and alternator), and they spent yesterday getting that done and changing the title. We then went to the temple in the evening. That was a very wonderful time to be there. We barely made it - Jeff had a chatty client that made him really late. We met him half-way there and slipped in just at the last minute. Afterwards, Mother and I were in the dressing room and felt a hug from behind and we turned around to see Stacy there! It was good to talk with her even though the girls and I were just there last week. Since my progress (or not) is changing everyday, I had some things to catch her up on. That was a blessing. The setting sun and the crescent moon were both a bright orange-red because of all the fires in Central Washington. There are so many and with the wind blowing all the smoke our way, we have had hazy atmosphere for longer than a week. Tonight, we couldn't even seen the sun the haze was so thick. It felt like dusk right before a storm from 5:00 on tonight.

Surgery - alterations

Here I am again having to redo something in my schedule. And I am finally sitting down to write something, but I really have to get the girls something to eat before I leave to go to the temple.

Yesterday was supposed to be a surgery to get my port inserted and possible SNL - sentinel node biopsy. That didn't happen. I will copy what I wrote into an email and then I have to go.....

My life is changing literally by the minute these days. Once all the tests and preliminary stuff is done, I will (hopefully ) be down to a simple (?) schedule.

I was scheduled for a surgery today to insert the port that is used instead of an IV for all the injections I will be receiving over the following months. There was possibly going to be another surgery at the same time depending on the results of the breast MRI. Those results came back with undeniable showings that the lymph nodes are infected. I am now rescheduled for port surgery Wednesday morning. a PET-PEM scan is tentatively scheduled pending insurance authorization - for Friday morning. The chemo will start as soon after that as they can - Monday?

The surgeon called this morning and Jeff and I had a nice long talk with her. She is very serious about her job - her job being to make me better. The MRI showed that the cancer is more than one lump, but it is contiguous - meaning that they measure it as one space because it is the same cancer, not 2 or 3 different- as big as the smaller lumps take up all together. With that measurement, the lump(s) measure 5+cm. The lymph nodes are also infected so that means that the cancer is in them. Since the lymph nodes are a filtering system for the body, and  they have cancer in them, the whole body is at risk. The PET-PEM scan will determine where - if - the cancer has spread to elsewhere in my body. That involves being injected with radioactive sugar and the scan will pick that up. All cells love sugar (it makes them grow), so they soak up the sugar. Cancer is fast growing, so it soaks up more sugar and will show more brightly on a scan. The lymph nodes being infected does not mean that the brain is also infected, but because I am HER2 positive, there is a larger risk that it might have spread there also. This is not an emergency test, but the brain cannot be scanned on the above mentioned scan - that has to be done on a separate brain MRI - will be scheduled when it can be fit in - probably next week. The PET scan needs to happen before chemo starts.

I am just realizing that I should be writing all this on my blog, but I did want you special-to-me people to know the latest. We have been waiting, waiting on this MRI - it had to be redone last week, to know the direction all my treatments will be going. There are still a LOT of questions and uncertainties. Once I start chemo, then that will be scheduled out for 18 weeks (6 rounds, 3 weeks apart), and I will at least have a better idea of what to expect. Right now everything is changing even as I sit here and write this. Life goes on and there is also that to consider!

I love you all! and thank you sooo, so much for all the prayers and fasting, etc. being sent my way. I know that without those I would be a basket case. My friend I walk with in the mornings, probably thinks I am an airhead and missing all the importance and seriousness of the situation. I do understand that, it just isn't effecting me with worry. I have the feeling that I can do the next step - then take on the one after that. I can't get myself worked up over what will happen down the road.

I am receiving texts and emails - just know that they make me smile and laugh or whatever, but I might not be able to respond right away - I love hearing from you! and I most likely will be able to respond sometime, just not right away. 

xoxoxo to you ALL - you may share this with anyone who may be interested or I may have overlooked - I have learned not to assume anything with this enemy, all the information is changing all the time. It is bad, but it will be overcome!

UPDATE: fro the above email which I wrote last night - the PET-PEM is not authorized by the insurance. Now I am waiting for authorization for another type of scan - I think she said CT/bone.
I AM having the port surgery tomorrow morning, then will be waiting for the next step to be dictated to me so I know what I can do about that.