my longest hardest day yet

Get ready boys and girls... today is a doozy. And a long post too!

But before we begin on one of the toughest days I've ever done, let's recap.

Mon: Irritating Onc day where I was not told about suspicious fluid around lung/heart in time to get a biopsy & I got contradicting info from his NP the week before. 

Tues: Spending the morning getting Immunotherapy and 2 Chemotherapies before going straight to the airport to fly to Houston and enduring long rental car lines and afternoon heavy traffic.

A few more checks off this weeks list... a few more to go:

Now back to my Wednesday... the Humpday I would like to forget!

So, after 8 hours of cancer treatment, flying, and travel in congested Houston the day before, I didn't have much rest because we had to start Wednesday early. My husband and I decided to walk to the medical center since our hotel was close. However, it was not necessarily the easiest or closest walk - tons of traffic, intersections, and some strange individuals out and about at 6am. 

Here is my Original Wednesday Itinerary:

• 7am Mammogram
• 8:15am Ultrasound (possible biopsy)
• 2:00pm MRI

Here is what is actually going to happen:

• An all day, 7am-4:30pm, non-stop breast prod, poke, and search that was very painful.

Mammogram

My medical day all started with a mammogram appointment at 7am, but since we arrive a bit early, I got called back at 6:45am. It felt crazy early, and I was still dealing with the side effects from treatment on top of knowing today was going to be pretty hectic. I was looking forward to having a slight break in the schedule to go back to the hotel where I could eat and rest (between the Ultrasound and MRI). I should know by now that nothing I do goes according to plan!

My previous June mammogram from Huntsville was never sent to MD Anderson which caused some confusion. However, I had brought a giant notebook that held all my scans and records for this cancer (and the 2013 cancer)... sort of...

Before coming I was told to take it to my doctor's appointment on Thursday, and not to bring it today. Now the nurse was wanting the images. I had left the book in the hotel. So, I had a nurse tell my husband in the waiting room, who then walked back to the hotel to get the book. (Here was one of my first mistakes - I should have brought the book so they should have taken all the many disks and started uploading the images... but even after he gave it to the nurses she told me she only wanted to download some of the images...

pre-warning... it would have been easier to have them start downloading ALL the images at this time - it takes a long time to download multiple disks with CTs, PET, Ultrasounds, Biopsies, MRIs, and Mammograms (and since they didn't - it caused a lot of work for my husband that day & still didn't happen).

At first, the nurses wanted to wait on my husband to get back before taking the mammogram images. However, I explained we walked so they decided to start the mammograms (and later compare them to my June mammogram after my husband returned - he's a fast walker). I was kind of shocked - they took so many images. I don't think I have ever had that many images taken of my breasts. 

Big paddles, small paddles, left, right, left. They kept coming back for more - especially since they found something right under my left nipple. Ironically, my Oncologist had mentioned he felt something there at my last appointment with him. Yet, none of my June mammograms noted this area or saw anything wrong. I already know they think they found something new, so they are going to focus on it (and they were definitely going to add a biopsy onto the ultrasound, so I realized my potential time to rest between appointments was shrinking). 

The mammogram imaging appointment ran over a bit into my ultrasound appointment time. I had at least 1.5 hours of squishing both my breasts, but the focus was primarily on the left.

At this point, I was holding up pretty well. The mammograms were uncomfortable, but not anything more than the just a longer mammogram appointment. I had a very short break, like 10 minutes in the back waiting room of the mammogram area before they moved me into an ultrasound room. I was so sick to my stomach from chemo and not having any food. I finally found a nurse and had them get a package of peanut butter crackers from my husband, who had also brought back my medical book and the nurses had already started downloading the mammogram images. What I didn't know was they also sent my husband somewhere else in the building to a department to download the rest of my CDs. So, he was sent off on his own adventure while I was still continuing on with mine...

Ultrasound

This second appointment started closer to 8:30am. Normally, ultrasounds aren't very long. In the past, it could be 15 min to 30 min - as the ultrasound tech focuses on whatever they find in the mammogram. Not today! 

The first part of this ultrasound took 2 hours of pushing (pretty hard) non-stop at every layer of my left breast tissue and lymph nodes under the arm, over the shoulder, in my neck, and around/on my port. This was the longest, most grueling ultrasound I have ever had. They tech glided and pressed over and over... it was non-stop for 2 hours on just my left side.

I had to lay on my right side with a pillow under my back, but my hips were to the left. The angle was very bad for my back issues. Plus, they were pressing on me hard, so it really hurt. My bruising from the original port procedure was still bad (and later turned dark purple from all the pushing on it from today, as well as red spots all over my port area). 

After 2 hours focused on my left side, they did a shorter exam on my right side. It was more like 30-45 minutes. I was in a ton of pain - all over. My breasts were tender. My back was jacked. My legs hurt. My hips hurt. I was sick from chemo the day before. I had not eaten anything or really had any water. I was exhausted.

It was now almost noon! At this point, the tech had left the room to go discuss everything with the Radiologist. I got off the table and sent a brief text message telling my husband to go ahead and check out of the hotel. We had got a late hotel check out since I was counting on going back to the hotel between the 8:15am Ultrasound and 2pm MRI appointments. I had planned on resting during that time - and I was now realizing that today was going to be tougher than I imagined.

At 12:15pm the Radiologist came in into the ultrasound room and spent another 45 minutes focused on the area under the left nipple – and to get to it she had to angle the ultrasound wand so it pressed upward pushing on my port – which was additional pain. With all their searching and all the new focus on an area in my breast, I was not surprised that she decided to do a biopsy.

I had already figured that a biopsy was coming the minute they added the small paddles focusing on the left nipple during the mammogram. What surprised me is the insane amount of time the Ultrasound took (especially since they were likely planning a biopsy from the minute they found a new area). I was also surprised for the amount of pain it had caused me (however, I have never had that much poking and prodding for so many consistent hours)... as well as the fact I was already pretty beat down from travel/chemo and now having no breaks between all this testing.

Ultrasound Guided Biopsy

It was after 1pm at this point and I had not taken my regular pain medications, so my pain level was insane. Not only my normal chronic pain, but the fact I had been in an awkward position on my side/back for so long - and the pushing and prodding on my breast since 6:45am.

So far, MD Anderson had spent 6 hours examining my breast, and I was definitely feeling the pain. But this was the 1st break I had in a while, so I took my drugs and went to the bathroom. I really wanted to run away, but knew that I had to get the biopsy done.

Before they could do my biopsy, they had to take my BP - it was 169/111. I have never had a BP that high (or at least I cannot remember ever being that high) – and I think it was due to the significant amount of pain and amount of physical pressure I had been getting during this non-stop breast investigation. My skin was getting raw in certain areas which hurt too. And at this point, I think I wasn't even realizing how long it had been. I was just doing what I needed to do.

On the positive, the biopsy was pretty painless considering what I had already endured (except my back and the initial numbing shots that were put in my nipple area weren't fun). The Radiologist took her time and took 6 to 7 samples – which felt like a lot. Originally, she said she was going to do 3 or 4, but I think they were being cautious and trying to take extra tissue to be thorough since it was a small area.

I could see on the ultrasound images on the screen and it looked like they were having a hard time finding exactly where to go. The area they were focusing on looked more like a layers in the tissue vs a mass. The Radiologist was unsure if this this area was the primary tumor or something that came before or after the lymph nodes (or if it is cancerous). Basically, MD Anderson was trying to find that initial cancer source. However, it was coming at the cost of my body.

Right after the biopsy, I had to go back to the mammogram department to take even more Mammograms to make sure the clips, that were put in the area under my nipple during the biopsy, were done correctly. At this point, those images were pretty uncomfortable. I was so sore and tired and had just had a biopsy - so the images hurt more than normal. But, I did it!

After my medication & biopsy they took my BP which dropped a little to 145/90 – which is still high for me. But there was no time to do anything. It was 1:45pm and my MRI was scheduled for 2pm, so there was no time to eat or rest or relax or recover. I was given after care biopsy instructions, but was told I would not be able to ice my biopsy area like I am supposed to do since I was running late and had to get to the MRI department.

MRI

During the almost 8 hours I had been tortured so far - and it felt like torture at this point - my husband had done a number of things. He had walked back and forth to the hotel around 3 time (to get my medical notebook, check out of the hotel, and to get something he left). He had also been sent on multiple locations by nurses to try and get all my images uploaded, which turned out to actually harder than one would think (and the department person who said they would download it - did not do it - which is a whole other side story). He was told multiple times by staff that he could not see me or check on me, but he knew I had to be almost finished. He was concerned because he knew my MRI was scheduled in just a few minutes and located on a different floor.

When I came out, he could tell I was exhausted. I looked it. I was so hungry too. I wanted to grab something to eat (other than the crackers in my bag), but by the time we walked to the MRI location and checked there was no time. I got a brief moment where I sat in one of the lazy boy chairs outside in the waiting room and talked to another couple nearby. The woman asked me if I had ever done a breast MRI - which I had. Then she told me that she had to come back to do her MRI again since the last time she was unable or didn't handle it well. Then she asked me if I was going to be taking the sedative to do the MRI. I kind of thought, "why on earth would I do that?" I should have known that this was a foreshadowing moment!

I've done breast MRIs. I had one a month ago. I have had many and never really had any issues (other than the noise, IV issues, and normal dislike of scans). Generally, they are no big deal. This MRI was the hardest test I have ever done! And that is saying a lot. 

It was excruciating. I cannot even describe it in detail because so much of it was physically painful. I spent almost an 1.5 hours prepping for the MRI. 

First off - the IV. They did use an IV specialist – but still had trouble with my veins. It hurt. I was dehydrated which didn't help. It took multiple sticks and some digging in the vein to finally get it to work. Ouch!

Second - I spent almost 1 hour trying to get my body into the position they needed to get the images. I do have larger breasts, but they aren't insanely big. Yet, she refused to drop the table and wanted to raise me up by building upward using foam between my breasts on the sternum. The foam pieces were not attached to anything, so they weren't stable and were uncomfortable. And it took multiple, multiple, multiple attempts to find the right height.

And it wasn't just the height, she was trying to get my body in some position that she needed. Seriously, this was the majority of my prep time was spent with the tech trying to turn me in ways that my body was unable to do.

She would have me hold myself up in a downward dog position which was near impossible after the day I had, the biopsy soreness, and the back pain I was trying to pretend didn't exist – was near impossible. 

She would ask me to raise one of my knees up while holding myself in this awkward downward dog and adjust my hips at the same time. At the same time, she was trying to raise my chest off the table so she could building-up the foam cushion (not soft) between my breasts that was insanely painful. If you remember, my my port is located near the sternum – and it was still sore from all the bruising too. Double Ouch!

During one of the last attempts to get me into position, she accidently got my IV got caught on the corner of the machine and it almost ripped out. I cringe thinking about it. The pain was not fun. 

By the time she got me in the correct position, I was crying into the face pillow while she shoved crap (earplugs) in my ears and then tried to talk to me. Between it all I couldn’t hear her. So, I just started calling out "just do it; I can’t hear you,, but I will not move and I know contrast is going to be used - just get me in the machine now." 

I spent 45 minutes completely still in excruciating pain while brutally and narrowly enclosed in a very loud MRI machine that vibrated so hard it shook my body and hurt me in ways I didn’t think I could hurt any more. I cried and endured. 45 minutes of pain feels like a very long time when you are in it. I finished with snot dripping out of my nose, a painful dry mouth, so many parts of my body in pain, and crying eyes, but I did it. 

I didn't even have the strength to get myself up off the machine, but somehow I did. I left with a swollen face and breast, as well as a bruised sternum and overall feeling of misery. It was really kind of sad. My left side is crazy sore and swollen – everything hurts in ways I cannot describe… but I did it. I finished at 4:30pm.

When I walked out, and I was defeated. My husband was dealing with my disks a floor away. The department he was told to go to basically sat my images aside and didn't do anything with them all day. Now, my husband was trying to get them back. He knew when he saw me, I was done. I was holding back my tears. He wanted to walk back to the hotel and get the car for me, but I wanted out of there. I would rather walk back with him then sit there one more minute.

I cried a lot after - even on the walk back to the hotel. We still had to drive almost an hour away to check into a new hotel in West Houston. And it was 5pm traffic. We were both hungry (he had not eaten either), so we saw multiple restaurant options at Rice Village while stuck in traffic on our drive and decided to stop. 

I must have looked pretty pathetic when I ordered because the waitress gave us both free pity cookies (seriously). I was a hot mess, but still a friendly hot mess. She felt bad for us and I guess saw my medical band on my wrist. Plus, it was all over my face. I guess even at my worst, I am still kind to others and it usually makes something good work out. I am proud of that. After eating a bit, we spent 1 hour in Houston traffic to go 19 miles to our hotel.

I cannot even fully describe how today really went. It was 7am-4:30pm of being poked, pushed, prodded, and a medical guinea pig… it was honestly almost non-stop of some form of physical contact that whole day. I was rarely not having something done to me all day. Throughout that time, I only ate 1 packet of peanut butter crackers and some water. I was so sick from chemo too. 

It will take me time to even process how much happened to me today. I am stronger than I think I am – and I am pretty proud of myself. It was way worse than I imagined it would be, but I am trying to be grateful they are being thorough. I felt like my breast was a Where is Waldo and all the techs and doctors were determined to find something in my breast. However, it did feel like at the cost of me.

It was the hardest day I have had in so long - maybe one of the hardest. I am pretty weak from chemo and from all the pain, but even though it was so very hard, I am going to recover and do whatever is next because I have to – and I am strong enough to. I will say it is so very hard and I am trying so hard too do what I have to. I am working so hard to find answers and hope we will know more soon.

And know that despite all this – I am ok. Though not ok. But ok enough to fight another day!

Inspiration for the Day - Chuck Palahniuk's book Fight Club