Goble This Cancer--Day Three

I'm 30% done with radiation!  It's zooming by.  

Several people have asked about how radiation goes for me.  It's different than what I expected and probably different from others' experiences.  I am having minimal radiation and only in one specific spot in order to protect the one area of my spine that is bulging 25% or so toward my spinal cord.  The radiation step is not what is going to kill the cancer in me; it is only to protect my spine, control pain, and cancel the growth of the cancer in one of the most vulnerable spots.  For all these reasons, I have an extremely short time of actual radiation and have not experienced damage, irritation, or burning to my skin.  This is a surprise, as my only frame of reference for radiation is in the choice to have or not to have it in the treatment of breast cancer.  I remember one of the negative factors was the damage that would be done to my skin.  My plastic surgeon was grateful I had not undergone radiation, as it would have made his job much harder and my skin more difficult to work with and heal.  So far, this radiation treatment is minimal, therefore allowing the most strength in the bone marrow in preparation for chemo.  

Here is the radiation room:

    

I get up on the table, resting both my head and legs inside foam pillows.

Gig 'em, Goble!!!!

After this, my techs raise the table and move it back, so I am directly under the machine.  Using my tattoo markers, they carefully slide me back and forth, forward and backward until I am perfectly lined up.  Finally, they leave the room.

Using monitors and computerized controls just outside the room, the techs scan me to check my placement.  Sometimes, the bed is adjusted, up/back, forward/down---whichever way sets me up perfectly.  Then, the circular plate that is above my head rotates under me.  I hear a whirring for about 30 seconds.  The plates rotate back to the starting position, the bed inches completely forward, and it's time to go!

I always need help sitting up, as that has been the hardest position for me since all of this has started.  I've ALWAYS been so great at sit-ups, which has saved me over the years in physical fitness tests, as running was quite the challenge in school.  To be physically in so much pain that I cannot sit up from a lying position has been a major tell-tale sign of a problem.  It's frustrating to need so much assistance with something that has always been easy, but the techs are always so kind and understanding.

Three days has zoomed by, and so far I've had no negative side effects.  At least, I haven't noticed anything negative, especially since I've been too busy with retail therapy!
    

Goble This Cancer--Day Two

When I left the hospital after my surgery, I noticed it was only 9:00.  Instead of going all the way home and coming back for radiation later in the day, I figured it would be just as easy to head to the other side of the medical center and wait for radiation.

I scanned in, got dressed, and actually ended up waiting because they were running a bit behind.

Day #2 was just as easy as before, once I finally got in.  Get on the table, line me up, scan for correct placement, and the machine whirrs and rotates for a few minutes.

Done and home before I know it!

Two treatments down, 8 to go.  This part is easy!

Port

I had the first case of the day to have my meta-port placed.  The good thing about the first case of the day is that it runs on schedule.  The bad thing is you have to be up and at the hospital EARLY!  I am NOT a morning person, but I'll take the first case in order to get in and out and on with my life.  

As usual, even with warnings about being a hard stick, the nurse had to do two IV's.  I guess I'm just destined to be a pin cushion before surgeries.  This is my best "girl, please!" look.

Everyone on the internet is over here posting their last beach day photos of the summer, sitting looking out at ocean tides rolling in on sandy beaches.  I'm posting my view of Bair Paws socks looking at the soothing vanilla hospital wall.

Then Stephen was able to stop in and cheer me up before he had to go start his case.  I love the pink ribbon OR cap, for good luck!!!

Then, my "friend," the Versed, came on board to help me feel nice and ready for surgery.  I remember very little after that, other than a nice, deep sleep.  I deserved it after waking up before the sun!

Steve and Timee came to hold all my belongings and wait for me to come out of surgery.  

Before I knew it, I was back and being forced to wake up.  Then, some grape juice, graham crackers, my discharge papers, a wheelchair, and out!  

This port was placed a little differently than my other one.  Dr. P used the same larger incision, but place it higher up and with a smaller, new incision on my neck.  At this point, what's another scar when you have so many?

I'm sliced and diced and ready for the chemo battle to start.....as ready as a person can be.  How thankful I am for being able to receive my drugs through a port and not to have to be subjected to an IV stick each time.  To avoid that, I'd go through surgery any day of the week!  

Goble This Cancer: Day One

Today I had my first ever radiation treatment in my battle against cancer.  I didn't know exactly what to expect, and it was even quicker and less painful than I had imagined.

First, I received my scan card.  From now on, I simply scan in to register myself, go through the door, find my robe, get changed, and wait to be called.    

The techs came to get me.  I laid down flat on the table, and they positioned me according to my tattoos.  When everything was lined up perfectly, they took an x-ray to check for precision.  The machine moved around me and made a subtle noise.  Then, I was told to hold still and breath normally during the radiation.  I didn't feel anything or see anything except the movement of the machine, and before I knew it, my five minutes were up! 

It's an in-and-out procedure--quick and painless.  I'll have the same appointment time everyday, unless something comes up, and I can easily change.  I'll meet with Dr. Goble every Thursday to check my progress, will have regular lab check-ups, and will be done in 10 days.  

That's about it.  The first day of battle was an easy one.  Too bad it's just going to get harder from here.  

Marking Session

Today I got five new tattoos to add to my collection.  These are nothing special, just 5 small dots, the size of a freckle.  

I met with Dr. Goble again today and explained some of the challenges with yesterday and some concerns from Dr. Naqvi.  He assured me that it IS cancer and they will only do a minimal amount of radiation and only on the T7, T8 spot where the bones have sustained the most damage.  He wants to reduce pain, but to also prevent this from messing with my spinal cord.  

I'm ready to get going.  Even thought Dr. N wants me to have a second opinion, I feel great about our current plan.  I've heard from 2 radiologists who specialize in backs/spines and they both recommended the exact treatment as Dr. Goble and his partner, Dr. S.  

In preparation for my first radiation, I had to have ANOTHER CT scan to determine the placement of the marking dots.  This way, I will also be placed at the same location on the table and the radiation will be able to be directed to the exact spot.  

After the scan, I was marked with a pen and then given 5 tiny tattoos.  There are 3 down the middle of my chest and one on each side to level.  They also marked the tiny tats with a paint pen to help with positioning for the first time, and so the tattoos would not get lost or confused with an actual freckle!  Here's what 2 of these spots look like when they were done:

I also get my very own pink fleece robe to use each time for my sessions!  Bring it on! 

Nothing about this is easy or expected.  I thought I was on my way to living a normal life and loving being  a survivor.  Now, the unexpected has happened, and way too quickly since the last battle.  I still feel much more at peace today.  

Doctors are very knowledgeable and have their specialities, but at the end of the day, they are all PRACTICING medicine.  A certain treatment might have a high rate of success, but nothing is EVER 100%.  There was supposed to be a 98% chance my cancer wouldn't come back, but it did.  There might be certain things that can't be explained, and I'm going to have to be okay with that.  One doctor might follow one plan, while another would try something differently.  It doesn't mean that either one will work with my individual body and all the other factors that could be affecting my case.  Just as in EVERY pregnancy is different, even for the same women, doctors can only give us the average expectations.  I have to press forward and understand that there is not ONLY one option in this battle and if I pick the wrong one, it's all over.  I won't give up fighting as long as there's even a chance of beating this thing.  

We will all have difficult times.  There are trials that we can't explain and might affect us from no fault of our own.   When we face them without fear, we are strengthened.  

What the......WHAT?!?

Today did NOT go according to plan.  In fact, last night as we were going to sleep, I said to Stephen, "the worst thing that could happen is if Dr. Naqvi comes up with something completely different than Fleener.  Then, where will we be??"  Well, I guess I have to do things the hard way.

We had planned to have a second opinion with Naqvi and to also ask her HOW THIS WAS MISSED?????  When we got there, we found out that the office hadn't received any of the scans or reports.  WHAT?  I have been in contact with both doctors on sharing information!  Well, I had copies of the CT scan of my brain and of the original MRI.

Based on those, Dr. Naqvi wasn't convinced.  She came in and questioned everything.  "How do they think this is CANCER?  What are they basing it on?  It could be arthritis."  (At this point, this is pretty much how we felt:)

Are you serious?  ARTHRITIS!!!????  HOW IN THE WORLD would arthritis be in all of my spine and other bones without joints, like the sternum, and NOT in....um....my hands?

I did agree with some points she made such as, we should have a biopsy done to figure out the pathology and to know exactly what we were dealing with.  She thought I was crazy for scheduling radiation markers and initial appointments with a surgeon to place my port.  "No, no, no, no!  You don't even have the proof!"  We need blood work, MRI with and without contrast, and a biopsy.

She left to call to make STAT orders, since it is quite difficult for me to come back and forth from College Station to Houston for MORE tests days in and days out.  I used this extra time to call Fleener's office and have them fax over the PET scan report.

Naqvi came back in and asked what I was taking for pain control.  My answers didn't meet what she felt I needed.  "That's not strong enough.  We need to get you on something better."  I found this interesting, as for the PAST TWO check-ups, I've been complaining about pain that "feels like it's under my breast, like it's IN MY BONES!"  And, she wasn't concerned and actually talked me out of refilling my Lortabs and going down to Tylenol 3.  Ironic that this same drug SHE PRESCRIBED is now not strong enough.  Hmmmmm......apparently I wasn't playing around just to get more pain meds!  In preparation for the tests of the day, I got a pain shot and Naqvi even asked if I wanted some valium or Xanax to calm me for the MRI.  I'm fine.

Just then, my PET scan reports came in.  I hadn't even seen the official report, only received the explanation of it over the phone. The findings say that there is correlation made with the MRI I already had.  "Extensive hyper metabolic skeletal lesions are seen, including the spine, pelvis, proximal femurs and humeri, bilateral ribs, scapula, and sternum.  There are hyper metabolic mediastinal and bilateral hilar lymph nodes.  No hyper metabolic axillary or internal mammary lymph nodes, pulmonary nodules, liver, or adrenal lesions are seen.

There is physiologic activity in the FI and GU tracts.

The CT scan used for attenuation correction demonstrates no evidence of pleural effusion or ascites.  Numerous lytic lesions are seen in the skeleton.

Impression:
findings are consistent with extensive metastatic disease.

We were waiting at the check-out desk when Dr. Naqvi read this, and it seemed as if her theory of this being anything BUT cancer was starting to become doubtful.  "Well, let's HOPE I'm right and this is NOT cancer."


We headed down with orders for blood work, a prescription for 100 Lortab, and check-in papers for a STAT MRI.

Then, the FUN part started.  At the registration desk, we were told it didn't look very promising for us to get in to an MRI today, as they had 2 sedation cases scheduled.  We could check in, but might be waiting for 5-6 hours!!!  We checked in at imaging and tried to be extra kind to the ladies at the desk.    I kept hearing a phone call about STAT orders for "Copper."  (surely they mean COOPER?!)  Shortly after that, one of the nurses came out to explain they had a "cancelectomy," as in the sedation case was cancelled because the patient ate this morning!  That meant, I was in!!!!  All we needed was to find the radiologist, Dr. Polacik and have him come talk to me.  When Dr. P came out, he was questioning why we needed this test done, especially because Dr. Naqvi had also faxed over orders for a chest CT.  We showed him our previous reports and started to explain the story of this crazy summer and how we got here.  Even after seeing evidence of the previous studies, he was still inclined to back up Naqvi and has reservations about the findings.  Until he looked down and noticed Stephen's AGGIE RING and that unspoken bond of the Aggie Network kicked in.  We suddenly had an "in," which came in handy for the rest of the day.

I went back, changed, and waited.  Finally, it was time for an IV----my least favorite thing!  I specifically explain that I am a hard stick and that my veins seem like they are great, but roll.  Some people think they are better than my personal experience with EVERY OTHER MEDICAL PROFESSIONAL that has screwed up an IV on me.  He got it in....sort of....and dug around for about 4 minutes until he finally got it right.

The MRI was long, about 40 minutes for each test--without contrast and with contrast.

I was taken into the holding area and waited and waited for my next instructions.

The nurse went out to catch Stephen up, as he was waiting alone for over 2 hrs. with no news up to this point.  She also came back and explained that we were trying to schedule whether to do the CT or the biopsy and if they were both necessary.  She was waiting to hear from the Doctor, but couldn't find him.  (He was actually out talking to Stephen.  After reading the MRI, he had to hear the whole story of why I needed the original MRI and that it wasn't to discover cancer, but to identify fractures or the causes of my pain.) The nurse found him, but didn't want to interrupt, as he was meeting with another radiologist to discuss my case.

Doctor P. found me and explained that, YES, there was a definite need for a biopsy, and we were going to do a CT with and without contrast.

(By the way, I think I might have met my radiation limit for the year in the last 2 weeks!!!!)


I went around to the pre-op area, and Stephen was FINALLY able to come talk to me.  It was after 2:00 o'clock by this time.  {My original appointment was at 9:30.}  They prepared me to go back, after checking with me about a million times to make sure I'm not pregnant!    

The biopsy wasn't fun, but it wasn't terrible, especially with Versed and Fentanyl on board.  Using and x-ray, the radiologist was able to give me local anesthesia and then take a needle to remove a sample from one of my lumbar vertebrae.  It was quick and nearly painless.

I did well with recovery....(look how above average I am!!)....and we were able to get right back for the CT, with and without contrast.

Even though radiologists don't usually go over results, as they send reports to the referring physician, our Aggie friend basically told us he agreed that it was, after all, NOT ARTHRITIS, and that he hoped we would be able to get it under control.  He told the pathologist to check for my breast cancer markers, giving them a heads up on what I have already been through.  Hopefully, this will help us get a better idea of what we are dealing with.  

Oh, yeah.....I also forgot to bring my phone with me today, thinking it would be no big deal, as we would be there and back again by early afternoon.  Instead, I ate a yogurt at 6:00 a.m., and finally got some dinner in me again around 6:00 p.m.  I also had about 100 texts and several phone calls and voice mails, including one from Dr. Naqvi's personal cell phone it looks like it is a significant disease in the bone, and he was really amazed because it was completely clean in March.  His suspicion is that probably before we started, I probably had this in my blood.  She's also concerned about radiation and in radiating the big area because it can affect chemotherapy later on.

After a long, LOOOONG day, I'm only somewhat closer to knowing the next step.  I am grateful for being thorough on getting all the scans and tests to confirm this disease and diagnose it in order to fight it in the best way possible.

I guess I'll keep finding out more each day.  

Treatment Possibilities

Today was information overload!  

I'd rather get started on learning all of my options than stay in the "waiting place," so today was also a good start in the right direction.  

I met with Dr. Fleener this morning and tried to get all of my questions answered.  There are still too many up in the air, but here's a little of what I learned.  Some good.  Some bad.  Some terrifying.  

I will have a combination of radiation and chemo.  There are quite a few options and different combinations, depending on the aggressiveness that I choose to go with.  

Chemo Option One:

This is the most aggressive and the one she recommends.  It is a combination of 3 drugs--1) Herceptin, the drug I already had 52 doses of. 2) Pertuzumab (also known as Perjeta), which is a drug that binds to HER2 receptors and prohibits growth. 3) Taxotere (also known as Docetaxel), a chemo that is more aggressive than the Paclitaxel I received in 2013.  It has the terrible side effects of the "typical" chemo patient: hair loss being the main one, fatigue, and extreme diarrhea.  

If I choose this option, I would receive 6 cycles of these drugs, administered every 3 weeks.  It will take about 4-6 hours each time.   I might have to come into the office to receive extra fluids if the diarrhea is bad enough that I can't keep anything down, to prevent me from ending up in the hospital with dehydration.  

Dr. Fleener thinks this is the best option, as I am young and have an aggressive cancer, which is HER2 positive.  Whenever it comes back around the year mark, that is another sign of how aggressive the cancer is, so we need to be aggressive in the fight.  The effectiveness of this option will be assessed every 3-4 cycles with a PET scan (or CT/bone scan) depending on what insurance will cover.  She hopes to be able to compare with another PET scan, since we already have the baseline results.  

Once we get me in remission, I will continue taking the 1st 2 drugs, the Herceptin and Perjeta for "as long as I'm in remission."  I interpreted this to mean...for the rest of my life AND A LOOOOOONG time!!!!!!

Chemo Option Two:

This would be a drug called Kadcyla.  This is a fairly new drug that is approved by the FDA for treatment of HER2 cancer that has metastasized. It is a combination of Herceptin and a cytotoxic agent.  It works by binding to the  cancer cells and deliver the toxins directly.  Because of this, there is no hair loss or nausea, and it's easier on my body.  The problem with this drug is that it's so new that doctors are still trying to rank the use of it and are still waiting for long-term evidence of its effectiveness.  The side effects would basically just be headaches.  

Chemo Option Three:

This is the least invasive option.  It involves Herceptin with a low-chemo pill called Xeloda. Dr. Fleener didn't talk to me about side effects for this, as I'm sure she doesn't want me to go with the least aggressive option.  

With all three options, I would also receive a bone building drug called Zometa.  It is given with chemo and helps with building bones.  It is often given to patients with osteoporosis, and can help with my case to prevent further damage to my bones and to strengthen them to prevent future fractures.  

Now comes the interesting part.  We need to work with the radiation oncologist, Dr. Goble, to come up with the right combination of chemo and radiation.  If he recommends being aggressive with radiation, I will not get the aggressive chemo right away, but Dr. Fleener would still recommend I start the other 2 drugs ASAP, hopefully next week.  

I asked HOW WE MISSED THIS?  She said she hadn't received any information about the CT scan I had in March, but guessed that the radiologist was looking for signs of cancer in my major organs and might have missed minuscule legions in the bones.  She wondered if we asked them to look again and focus on the bones, knowing what we know now, if they would find anything suspicious.  

I asked about the % of recurrence? We don't have an answer for that until we see how I respond to the chemo. She said, "I have to make it go away first!" If chemo "melts the cancer away," (Dr. Fleener used this imagery quite a few times), that is a good sign.  If it seems to work like it's supposed to then I have better odds at keeping it contained.  

I asked about the % of my chances of living 5 years, 10 years, or 15+ years?  "Do you REALLY want to know?  Patients and spouses come in all the time asking that and they say they really want to know.  Then, I tell them, and they wish they hadn't known."  I wanted to know.  Knowing is half the battle, right?  "The average is 3-5 years.  I'm not saying that's how long you have to live.  I'm just saying that's the average.  All I can tell you is the average, but we don't know now where you will be.  It depends on getting that cancer to melt away.  Young people tend to do better.  We need to see how well you do with treatment and go from there."  

 I asked about restrictions for exercise and diet.  There aren't really any.  She wants me to be mindful of eating a healthy diet, but during chemo, you just need to get down what you can get down.  Stay hydrated.  Drink water.  If all you can get down in liquids, try to drink Gatorade for the calories.  When she told me there were no restrictions for exercise, I was shocked.  "You mean, you would tell me it's okay to run?  I have spinal fractures!"  I'm just supposed to "listen to my body" and do whatever I feel like doing.  And NO HEAVY LIFTING!   

I can stop taking Tamoxifen.  She hypothesizes that my cancer now is probably not ER+, as I've been taking an estrogen blocking drug for over a year now, and the cancer still came back.  We might try to do a biopsy of my bones to check for the receptors of this cancer again to be completely sure were are fighting what we think we are fighting.  In the meantime, because there are negative side effects of Tamoxifen, the benefits do not outweigh the side effects.  DELETED! 

I asked about the use of essential oils, since I've already received several questions about that.  Dr. Fleener said she is not a 100% believer in the use of essential oils.  She said if I want to try some for certain benefits of relieving side effects, that would be fine, as long as it is applied topically.  Even though some citrus essential oils have some positive effects when mixed with water, since chemo (and radiation) can irritate my esophagus, we don't want to add more acidity.    

I made an appointment to meet with a doctor to plan a time to put in another port and the tentative plan is to start one of my chemo options next week.

Next, I walked to the other side of the building to meet with my radiation oncologist, Dr. Goble.  He was able to get me in and have a good consultation.  Last week I met with the semi-retired doctor, so Dr. Goble had read through all the notes, but hadn't had a chance to really study all of my scans.  He did say that the most likely area of focus for radiation would be T7 & T8 (thoracic area of my spine) because those are the locations of my compression fractures, the highest areas of pain, and the most obvious areas of legions.  In order to start radiation, I have to have a "marking session," a 30-45 minute assessment to determine and mark the exact location of my radiation.  Using a CAT scan of the area, they will focus on the correct spot and mark it with---TATTOOS!  I'll have 3 more tats to add to my cancer collection soon, one in the center of the area to receive radiation and 2 leveling marks, to help with the correct placement every time.  

My treatments will most likely be 2-3 weeks of 15 minute sessions, Monday through Friday.  As often as possible, they try to give me a set radiation time, so it's easy to remember and schedule around.  Then, once a week I meet with the doctor to monitor my progress and answer any questions.  They will follow my blood counts closely, mostly checking the WBC and platelets.

The side effects of radiation are minimal.  I can have some pain and discomfort in my esophagus and possibly difficulty swallowing and eating.  I will have some mild fatigue.  The severity of these side effects could be magnified by the combination of aggressive chemo, so Dr. Goble and Dr. Fleener will work together to come up with the best option to balance out the side effects and to get the best results.  

Tomorrow I meet with Dr. Naqvi for a second opinion and more information overload.  I will get copies of all of my reports and get a disk of all of my scans, so we have something to compare further scans to. 

I am leaning toward the aggressive treatment.  I don't want to go through all of that again, but I am not afraid of it.  I feel peace in knowing more information today than I've known all week and to have a plan, even a fraction of a plan, to move forward.  I do not like hearing the average life span of 3-5 years, but as I've told several people----I've always been above average.  

I am a fighter.  I will not give up.  I will exhaust all options.  And, in the end, it is all in God's hands.  He will use doctors to help me, but none of us know when our time is up.  All we can do is keep trying, keep pressing forward, enduring our trials well, and keep praying to know which paths to follow.

I leave you with an inspiring message of hope that came my way today.  Whatever you are dealing with, don't quit!  Keep trying and praying and carrying on.  You will not fail.