Thursday, February 27, 2014

The New Normal

Cycle three of Chemo has come and gone.

I can't say it hasn't been without it's ups and downs.


Less nausea.


Yikes, we have had some downsides this time.

It all started with the fever I developed. Not that it was a big fever. It lasted all of a day and wasn't even very high. Let me tell you- that little fever got itself some attention though. Doctors don't like fevers when you are on chemo.

The fever spiked at a high of 101.4 at (of course!) around 4pm the Thursday after my Monday chemo. The covering oncologist felt it would be best if I headed to the Emergency Room rather than wait for the next day, in case there was an infection working in my system. They sent me off to the largest emergency room in our area.

As luck would have it- every one else in this area decided to visit this particular ER on the same evening as I did...or so it seemed. The wait times were excruciating. We eventually were taken back to an examination room where blood and urine samples were obtained for testing. Chest X-Ray was taken. I was eventually taken for a CT scan with contrast. My oncologist was pulling the imaginary strings and directing the orchestra from afar, ordering each test and directing each step.

At the end of a 10 1/2 hour Odyssey, each blood test was negative for infection, there was no sign of pneumonia and they had no idea why I had a fever. Cultures would take a few days, but we had to wait that out. My blood pressure was low (96/47) and pulse was high (~112) for which they gave me some IV fluids.

OH and by the way, we see some nodules on your lung and liver on the CT scan. No need to assume it's a spread of your cancer, but talk to your oncologist about it. WHAT?!!? uh... no, of course I won't worry...why would I WORRY? sigh....

I did not bother calling the oncologist on Friday, figuring he wouldn't have the report by then and I had blood work scheduled for the following Monday. I planned to see if he could make time for me that day.

The fever left on its own Friday morning as mysteriously as it had appeared.

Sunday afternoon, the hospital called to say the urine culture came back positive for two separate bacteria (ewww...) so they would call in an antibiotic. COOL! Mystery solved!

Monday morning came and I headed to the oncology office for my normal bloodwork. While there, I mentioned my ER visit and asked about the blood cultures and mentioned the CT scan. They asked me to wait while they pulled up the results.

Can I just mention that my oncologist is the best doctor EVER? His staff is responsive and he is warm, caring and never makes me feel like I am imposing or asking a stupid question. That is so important when you are facing a major illness. This was no exception.

They pulled up all my results, he made a spot in his schedule *that did not exist* and went over each and every test that was run- and there were many. He review the CT scan in detail, since that was the test of greatest concern. He even took me in his office and showed me every image on his computer so I could see what they were seeing.

It turned out there was more than the ER doctor told me. There were spots on my lung, liver and spleen as well as a thickening of my esophagus. To break them down:

The lung spots were calcified, so not of concern, likely remnants of previous pneumonia.

The thickening of the esophagus is likely due to the chemo itself. Apparently this happens.

The spots on the liver and spleen were considered 'hypodense'. These types of spots can be many different things, from a spread of the cancer to malformed blood vessels. There was no way to differentiate on the CT scan. Further studies would be needed.

Logical next step would be an MRI, but I am not allowed to have an MRI due to the tissue expanders I have in place. On to a PET scan. According to the doctor, this is a more accurate and clear test for their purposes anyway.

The test was scheduled for Thursday to give them two days to handled the precertification.

I received a call saying it wouldn't be covered by insurance, but that was quickly corrected by reminding the precert area why I can't have an MRI. The test was on!

The PET scan itself was pretty easy.

They inject a radioactive sugar via IV and ask you to wait about 45 minutes for your body to process the sugar. Apparently cancer cells process sugar at a different rate than non-cancerous cells do, which is what allows the scan to see them.

After 45 minutes, it is really very similar to a CT scan, although in my case it was a CT scan of everything between my chin and my thighs, so it takes a bit longer than the average CT.

Once that is done, they send you on your way with strict warnings to avoid small children and pregnant women for 4-6 hours. In my case, I am also avoiding small animals since they think my lap is the best place to sleep. I am radioactive. LOL

Now for the biggest upside of all!

Amazingly enough, my oncologist office has already called with the results. No Metastatic Disease! PHEW!!!!!

I have to admit. Through all of this, this is the first time I have truly been afraid. I am glad this one is over.

What did I learn from this?

Scans are scary. Scans will be scary. They will continue to be scary for a long time I think.


This is my new normal.

Time to get used to it.

Thursday, February 6, 2014

This is going to be a long one.

So much has happened.

Where to start? At the beginning, I suppose.

October 9th.

Like clockwork, every year, I go for my routine mammogram. Generally these things are eventful for me. I get the phone call saying "We need you to come in for more studies". Then, off for the repeat mammogram on that side and inevitable ultrasound. Sometimes that is followed by a trip to visit my favorite breast surgeon (yes, I have had a breast surgeon for years now- he's great)

Not this year- for once, this mammogram came with the form letter. Your mammogram is 'Normal'. I thought "WOW!", that never happens. I expected them to find something, they always do. Never anything to worry about, but they always find something. Something to scan, press, poke with needles or cut out. Not this time. Cool. That feeling lasted just short of a month.

Fast forward to Friday, November 8th.

While taking a shower, I noticed a streak of blood on my arm. Upon investigation, I found it was coming from my left nipple. My first thought was "Well, this is new" and then "Did I scratch myself and not remember it?" no- you would definitely remember scratching yourself there.

More investigation located a lump just above and to the center from the nipple. OK, definitely not good. My first instinct was to call the breast surgeon. Appointment was set for the following Monday, November 11th. My second instinct was to start doing research. Within minutes I had a probable answer and it was pretty scary. There are lots of types of nipple discharge and reasons why they may happen. Blood is one you really don't want to see. At this point I am sure I need a biopsy to confirm the diagnosis.

Monday, November 11th

My breast surgeon took a look and did an ultrasound. His demeanor told me that he didn't like what he was seeing. We scheduled a biopsy for the following week.

Monday, November 18th

I returned to the breast surgeon for a ultrasound-assisted Core Biopsy. He also placed a small titanium marker so that the later surgery could easily identify the site. We knew that we would be removing whatever this was, just not the extent of the surgery that would be performed.

At this point, I left the doctor's office and drove from my home in PA to a conference in MD for the week. That conference was a blessing in that it kept me occupied for the week. I knew that the results would take a few days, but hearing from him sooner would mean bad news. I expected a call.

Wednesday, November 20th

My surgeon left a message on my home phone. I wasn't there to get it. (before you ask, yes there are others who live here, no- they don't check the phone)

Thursday, November 21st

I returned from my conference and checked messages. When the surgeon leaves his cell phone number on your voice mail you know he wants to hear from you.

My palms were a bit sweaty as I dialed his number. He picked up on the second ring. He sounded apologetic but simply said that they found cancer in the biopsy. Stage Zero Ductal Carcinoma in Situ. He assured me I would be ok and that he was moving my appointment scheduled for the following Monday to an earlier time so we would have plenty of time to talk.

I was in the bedroom when I spoke with him, so no one knew but me. The news was exactly what I suspected. It was no surprise to me, but now I needed to tell my family. I had to tell my husband, my grown children, my mother. That was the hardest part. That is definitely the hardest part of all of this.

I gave them what information I had and did what the doctor did for me- I assured them I would be ok. I also told them that I got the wimpiest cancer there was- seriously.... it was barely even considered cancer- don't worry! I don't think that worked. I tried.

Monday, November 28th

My mother went with me to consult with the breast surgeon on my options. I had already made up my mind on what I wanted to do. I had made that decision years ago. Like many women, I had decided that "if there is ever anything" my breasts will go. I wasn't so sure the doctor would agree with me though, and that made me nervous. I was dedicated to that conviction. I hated my breasts before, I certainly didn't want them now.

Let me explain that last sentiment. I am a small person, only five feet tall but have always had large breasts- too large. I had decided in the past year that I was finally going to do something to remedy that situation after my mammogram. I was tired of the stiff neck, sore shoulders and inability to buy clothing that went with them.

Anyway, back to the consultation. We talked about the biopsy results. What the various options were and I had options. I could do a lumpectomy with radiation, a single mastectomy or a double mastectomy. Because it appeared to be a non-invasive cancer, I should not need any chemotherapy.

I told him I wanted both breasts gone and that there was no question in my mind. He immediately agreed. In fact, both my mother and I felt he may have been steering away from the lumpectomy although he never said that outright. That was more a feeling than anything.

I did ask if we could do immediate reconstruction, as I was hoping to reduce the number of procedures. He felt that should be an option and gave me the name of an excellent plastic surgeon.

My only requirement was that this needed to happen by the end of the year since my deductible was met. I am nothing if not practical. My deductible is not the highest, but it isn't a low one either. That mattered to me.

He assured me again- I would be ok. I believed him. I still do.

Thus began an odyssey of doctors, tests and clearances for surgery. I won't list them all, but wow, it kept me busy. In the midst of it all, I learned the importance of being your own health advocate. That is a topic for a different blog.

Let's skip forward in time to Mid-December.

By now, I have met with my most wonderful plastic surgeon who came up with an immediate reconstruction plan. By the way- immediate reconstruction isn't really immediate...but it isn't bad. More on that later.

I also consulted with a hematologist who cleared me for surgery, since I have a bleeding tendency. I passed all pre-admission testing and prepared for sentinel lymph node biopsy by having radioactive material injected into the cancerous breast. The second part of that process is injecting blue dye the morning of surgery.

Sentinel lymph node biopsy is important because it allows the surgeon to map the lymphatic process so they only need to take the first lymph node rather than the older method where they took 10-15 nodes to biopsy at the time of mastectomy. This way they can take one, send it off for a quick look and stop unless they see a problem.

Wednesday, December 18th

The day of my double mastectomies. It was such a relief for this day to come, even though only 40 days had passed from that fateful shower until this surgery to remove my breasts. It felt like it was at once an eternity and yet like it passed in the blink of an eye.

I had a crowd of people with me that day, worrying about me. Again, this was far worse on them than it was on me. My family loves me and I love them and I would never dream of putting them through this if I had a choice. I appreciate them for their worry and their love.

Just before I went into surgery, my breast surgeon came to see me and asked if I had any questions. I had one. I asked him what he thought the chances were that I would come out of the surgery as a Stage Zero Ductal Carcinoma in Situ. He said he was sure. I wasn't.

I went home from the hospital the next day, sore but happy to be going home.

Recovery was interesting.

I will say that it didn't feel like I expected. I won't say it didn't hurt, but I think I expected more pain, considering how much they did.

The drains were....unpleasant. I had two and, if you aren't familiar with them, they are little bulbs that attach to these tubes implanted in the incision sites. The bulbs are squeezed and capped to create suction, which pulls fluid out of the wound. They require emptying twice a day, which basically means you uncap them and squeeze the fluid out into a cup and measure it, then flush it down the toilet. Squeeze the bulb, cap it and you are good for another 12 hours.

My incisions are larger than normal due to the size of what they had to remove (they were big boobs... LOL), so that proved to be a challenge for the plastic surgeon. He wound up having to cinch the incisions like a purse with a string. This will require some revision later, but won't be a big deal later he tells me. I trust him.

I have tissue expanders in place to allow later expansion and eventually, placement of implants. Since there was a bunch of skin left over, they were about half expanded during the initial surgery. These expanders are uncomfortable. The edges are squared, they are not sized to the patient and they dig into the muscle around the edges. Oh well, I was told I should be able to swap them out at the three month mark post mastectomy.

Christmas came and went, it was tiring but good. Kind of a blur really, but I was happy the surgery was behind me.

Tuesday, December 31

I had scheduled an appointment with my hematologist to review the final pathology results. I was happy to have this appointment since I would know the final results before the new year. My mom went with me for this one too. I suspected the results would be a bit different from the biopsy. I was right.

The final pathology showed that I had Stage 1a Invasive Ductal Carcinoma.

Pathology of tumors gives them tumor grades of three different types, each on a zero to three scale and I scored high marks on all three, 3 out of 3 for a total of 9/9. This really isn't something you want, but hey- I have always been a high achiever when it comes to test scores. Additionally, it is what's called 'Triple Negative' which means it is not sensitive to either hormone or Herceptin treatments. Again, not ideal.

The good news in the pathology was that the tumor was small, just under a centimeter and the fact that the lymph node was negative. Both are very good. woo hoo! Small battles!

What all of this means is that I also get to have chemotherapy. We looked at the possible chemo regimens and decided on the Taxotere/Cytoxan or "TC" chemo. I would receive it in four cycles over a 12 week period. I asked if I would lose my hair- the doctor said the chances were about 50/50.

Again, my poor mother was there for this news. I really wish she hadn't been. This was so scary for her. I just looked at her and told her it would be ok. It really didn't work that time, but I tried. I hate that I am doing this to them.

My first chemo was scheduled. My hematologist is now officially my oncologist.

Friday January 3rd

I cut my hair short in anticipation of my first day of chemo. It was very empowering.

Tuesday January 7th First day of Chemo

I would be lying if I said I wasn't nervous this day. I was. I was also very anxious to get started. The office was packed that day. It seemed everyone in town was there for something that day. I would have loved it to be quiet. Oh well.

I had my blood work and they led me back to the chemo room. This is a large room lined with big pink recliners. Each chair has an IV pole and machine dedicated to it. Some have speakers for the various televisions set up around the ceiling of the room. There are small chairs in the center for family and friends, although most people seem to come alone. No one seems to talk to each other. Most of them sleep.

The staff are among the friendliest and warmest people I have ever met. My first nurse is Lauren. She is 4'11" of love and energy. She explained each and every step and what I should expect. She went through side effects with me and eased my fears.

After 4 1/2 hours, my first cycle of chemo was done.

Wednesday January 8th

I receive my first Neulasta injection. Neulasta is a medication that, in layman's terms, tells your bone marrow to make white blood cells. A side effect of the Neulasta is that it may cause bone pain. I take Claritin and Ibuprofen to try to counteract this pain.

Cycle 1 Side Effects

I encountered some side effects so far, most of them minor. Here's the rundown:

Nausea- Some, but I was able to control it with Compazine

Intestinal upset- Gas, diarrhea mostly, not terrible

Ulcers- Mouth, entire GI tract, nasal lining. Mostly just terribly irritated rather than actual ulcers

Nosebleeds- bad. just bad. I had my nose cauterized twice, packed after the first time.

Hair- My hair started to fall out around day 14. I had it buzzed on day 18. I couldn't handle the wads of hair. Again, very empowering. Still had stubble falling out, but it was much better. It took another week and a half or so for the stubble to slow down. I now have a peach-fuzzy head. I don't mind it at all actually.

Taste- I can't taste food. Well, I can't taste most food. Proteins and savory foods are the worst. Dairy is the best. This is by far the worst side effect for me. Taking the taste of food away is like sucking the joy out of life. This started around day 16 or 17.

January 27th- Cycle 2 Chemo

Cycle 2 of chemo went off without a hitch and we shaved about 45 minutes off the time. Still very quiet in the room. I wish people liked to chat or something.

Neulasta shot followed on the 28th.

Cycle 2 Side Effects

All of the above plus:

Fingers- My fingertips hurt. I assume this is a nerve thing, but they are sore on the pads of my fingers. Cold is very bad for them.

Fatigue- I had this for the first cycle too, but it is much worse this cycle.

Dryness- General dryness- skin, eyes, etc.

Legs, Armpits- I haven't shaved in over a month! Unexpected BONUS!!!

Ok, now we are all caught up.

I will try to blog more as this odyssey continues. Feel free to comment

**like anyone reads this stuff**

See ya!