Feeling Like Myself... Kinda

One of my sisters came to visit for the last few days, and yesterday, day 5 after an infusion, I almost felt like myself.  We watched a couple movies together, chatted about things other than cancer, and even made a cake together.  Yes, I was tired; yes, my head feels funny; yes, my appetite is low, but I almost felt normal.  And today, day 6 after the infusion?  I went to Target with a cute hat on, bought myself a latte, and (slowly) browsed the store for fun.  Yes - FUN.  Out of the house!

It's nice to know there can still be good days.

My New 'Do

Today was the day!

We headed over to Jason's place right after church to get my head shaved.  We forgot to get a good before picture, but there's a semi-recent one below.  Jason did a mohawk before the complete shave (at the kids' request), and then took the rest of it off.  

My head feels light and cold now!

(My shirt?  A favorite Shakespeare quote:  "Though she be but little, she is fierce.")

Hidden Costs of Cancer

I read part of a rant online the other day about people that raise money for medical needs when they have insurance to "pay for it all."  I only read part of the rant because it made me angry and I don't have room in my head for negative thoughts right now.

We have insurance, and we are very blessed to have it.  After we meet our deductible (which happened with my very first day of scans this year), we pay 20% of everything else until we meet our out-of-pocket maximum, which will be any day now when the claims catch up.

What insurance doesn't pay for is all of the hidden costs of cancer.

I can only speak specifically for breast cancer, and more specifically for me and my type of breast cancer, but we've already run into a lot of hidden costs.  And I'm still at the beginning of my treatment.  I'm sure as we get into surgery, radiation, reconstruction surgeries, and hormone therapy there will be many more.

Here are the hidden costs we've run into - so far - with my cancer:

A complete wardrobe overhaul.  I was never a fan of button-up shirts before cancer, but with port surgery and chemo, I wear a lot of (new) soft flannel button-ups.  Along with those, I purchased leggings, cozy sweatpants, and fuzzy socks.  Layers are also important - zip up hoodies and soft cardigans.  All things that I can get on without pulling them over my head since I couldn't raise my arms well after my biopsy or port surgery.  They'll also come in handy after my mastectomy.  I just bought a few loose V-necks, too; I can raise my arms now, but need to leave my healing port area to air out since the skin around it is still peeling due to my adhesive allergy.

New bras - wireless, yet supportive, and front-close.  (See above, re: not raising my arms.  Front close is also much easier when you are too tired to get dressed without a break after chemo.)  Button-up pajamas, also.

I just had my second chemo treatment and my head is feeling tingly/itchy, which is a sign that my hair will be going soon.  I have an appointment in a few days for my awesome hair guy, Jason, to shave my head (there will be photos!), and have purchased and been gifted a hat collection to be prepared for months of baldness.  I also bought an all-natural baby shampoo to use on my scalp to keep it healthy and clean for those months.

Another side effect of chemo is incredibly dry skin.  I stocked up on heavy duty moisturizers  - face and body - to combat the dryness.  I also bought aloe-infused socks.  Radiation will come with its own challenges; I don't know if I'll have prescription creams for that or not.

Chemo can make your nails painfully lift off your fingers/toes and then fall off.  A way to combat this is to use nail strengthener & dark polish along with ice mitts and ice socks during infusions.  Those are not covered by insurance.  We also purchased a small rolling cooler to transport the ice mitts, etc. to the infusions.

My cancer is ER and PR positive, which means that it feeds off of hormones.  I need to switch all of my beauty products to natural ones that will not affect my hormones.  That means eye cream, face lotion, night cream, body wash, shampoo/conditioner, etc.  None of that is covered by insurance.

I'll be attending a Look Good Feel Better class (run by the American Cancer Society) in about a week.  Friends tell me that they encourage you to throw away all of your open makeup due to the bacteria that grows on it.  In a healthy person that bacteria isn't such a big deal, but in someone with a low white blood cell count, that can be a problem.  It will all need to be replaced with new, natural makeup.  I've also had to purchase eyebrow makeup for the first time in my life since my eyebrows (and lashes) will fall out.

Other costs we've incurred:  books for the kids to help them cope with what's going on; a large Kindle and earbuds (and earbud holder) to watch shows during chemo; gas to and from all of the appointments; extra groceries for visitors and for my cravings to keep calories up; a vest since it was easier to get on than a jacket with sleeves; more printer ink to print out forms and test results; and hard candies and snacks for the infusions.

We're learning as we go, and Amazon Prime is more useful than ever right now.  (If you'd like info on any of the products we've found useful, let me know and I'll send you a link.  I don't make any money off of it - I'd just like to be helpful.)

So to everyone who has sent gifts or donated to the GoFundMe (Linked on the right - please share it!), thank you, thank you, thank you.  Your support, encouragement, and prayers are more helpful than you know.  You're enabling us to get through this without panicking when we open the mail.

My 2nd infusion (2/12 Taxol) is done and went fine.  I do need to call my MedOnc to see if they'll lower the steroid dosage for the next infusion, because it makes me woozy.  Otherwise, all is going well.

Port area (left on 1/16, right on 1/24)

The room for my 2nd infusion; a recliner instead of a bed

All set up and watching Dr. Who.  Tired from premeds! 

We added the ice mitts, etc, before the chemo started right after this.

 

Chemo Side Effects

Taxol 1/12
Day 4

(Taxol is the chemo I'm currently on.  I've done 1 of the 12 weekly infusions so far, and I'm on day 4, if you count infusion day as day 1.)

I'm finally on the upswing!  Side effects so far haven't been too bad.  I'm told they compound, so with each chemo round it'll get worse, but round 1 has been manageable.  

So far I've had a bad headache, a little bit of nausea (easily controlled with Zofran) and some other tummy issues that I won't go into, bone/joint aches, and weakness.  My port - and adhesive-irritated skin - is still very sore, too, but should heal over the next week or so.  Day 1 the side effects weren't  too bad, though I didn't sleep at all that night because of the steroid.  Day 2 was worse, with the headache bothering me the most.  Day 3, yesterday, I was completely wiped out.  Going from one room to another wore me out, so I spent all day in the recliner.    Today is a lot better, and I've improved throughout the day.  I'm still aching and have a headache, but can move around better than I could before, so I have high hopes for the next few days.  Good timing, too, since Jamie will be back at work tomorrow and I'll be doing the drop-off/pick-up routine with the kids.  

By all accounts, my hair should start coming out sometime between day 10-14, so my awesome stylist, Jason, is ready to shave my head for me a week from today if I need it then.  (Expect to see lots of pictures of the experience.)  If my hair is still hanging on, we can delay the appointment, but I'm assuming things will follow the expected timeline there.  Eyelashes and eyebrows usually hang on a little longer, from what I understand.  They could last a few more weeks or even longer.  We'll see! 

I think I'll handle losing the hair on top of my head better than I will handle losing my lashes and brows.  I think having the hair on my face gone will make me look sick in a way that not even being bald will.  I've always liked my full brows and my long, thick lashes.  Hopefully when they grow back later they'll come back the same.  (Maybe I'll have to look into one of the expensive lash treatments out there to encourage that regrowth when it's time.  Any recommendations?)

Friends and family have been amazing with their support.  We've had so many prayers, donations to the GoFundMe campaign, and supportive messages, and I've received gifts with gift cards, cute hats, and more.  Call me shallow, but having a surprise package arrive at the door when I'm feeling cruddy (physically or emotionally) has cheered me up every time!  So thank you for making this easier than it would be otherwise.  

First Chemo

I made it through my first chemo with no allergic reactions!

Jamie and I got to MD Anderson Sugar Land at 8:00 this morning. I had planned my outfit carefully and wore soft leggings, a button-down shirt (for easy port access), and soft Toms boots that I could slip off and on easily. Jamie carried the chemo bag full of supplies and a cooler containing the ice socks and ice mitts (that I'll use to hopefully ward off neuropathy and keep my nails attached.)

Blood was drawn first, this time through my arm since the port was still covered from surgery on Tuesday; in the future they'll use the port. Blood will be drawn before chemo every time to check my counts to be sure I'm healthy enough for the infusion. 

After the blood draw, a nurse removed the dressing from the port and applied numbing cream (something I'll do at home in the future), and my vitals were taken.

My skin doesn't like adhesives.  My face reflects that.

Shortly after, we were shown to my chemo room for the morning.

It hurt when the nurse accessed the port for the first time. I don't know how much of the pain was soreness from the newness of the port and how much was normal port access pain.  Jamie popped a hard candy (corn-free and yummy!) in my mouth to mask the awful taste & smell from the saline flush of the port, and then the nurse started the pre-meds - Benadryl, Pepcid, and a steroid. 

I was all cozy with the OU blanket the kids made me and Dr Who on my Kindle while the pre-meds ran. Right before the chemo infusion started, Jamie got out the ice socks and mitts. I added a hat and a scarf to my ensemble and got iced up. And the socks hurt. The mitts weren't too bad, but the socks were painful.  I felt like my toes were going to fall off.  I left the socks on for about 15 minutes before needing a break. They went back on after a 5 minute (and bathroom trip accompanied by IV pole) break, and were more tolerable then since they were less frozen.

The chemo itself was okay. It took about an hour and then we were suddenly packing up and heading home. I was already feeling very, very tired, but otherwise okay.

We left the hospital around 11:30am. It's 5:30pm now, and I'm feeling flu-like. Very tired, a little dizzy, and achy. My heart has felt a little fast (but not bad), and my throat/nose/sinuses are incredibly dry. My skin is also already drying out, so I need to stay on top of that.  I'm told the side effects will build with each chemo treatment, but at least week 1, day 1 is tolerable so far!

The mitts have ice packs over the fingers, and the socks have ice packs over the toes.

Helga

Everything iced over in the early morning hours Tuesday.  School was canceled, but some friends offered to have Gisèle and Miles over while Jamie and I were at the hospital.  We dropped them off and then arrived at the hospital shortly before 8:00am.

Leading up to the port placement, I had a lot of anxiety.  This was the first permanent, visible change that marked me as a cancer patient.  I already knew I had cancer.  I had gone to all the appointments and had all the scans.  But this?  This surgery would result in a daily reminder that I was going through treatment.  This was the beginning of everything.  It was hard not to get emotional leading up to it all.

I got checked in quickly and taken back to interventional radiology.  An IV was started first, and blood was drawn.  The echocardiogram came next.  It was done as a baseline since chemo can be hard on your heart; when I have subsequent scans done, they'll be compared to this one to see if any damage has been done.   After that we waited a while for a lung biopsy to be done on the guy next door before my procedure could start.  

While waiting, a good friend of ours who works at the hospital came by to visit.  She works there in the IR and was able to be present for my port placement.  When I was wheeled back to the procedure room, she was waiting for me.  Chatting with her while everything was being set up around me was a nice distraction.

The actual procedure was no fun.  I was given twilight sedation, so I was completely awake for the entire thing.  (I was hoping it would just knock me out.)  When it started, I felt quite a bit of pain, and had to be given two more doses of the pain medication in my IV before I was numb.  After that, there was a lot of pushing/pulling/pressure in my neck and chest during the fifteen minute procedure.  I tried to just keep my breathing even and not think about was going on. 

Recovery there in the hospital for an hour was a breeze.  I was still numb and relaxed and was ready to go so I could get something to eat and drink and get out of the hospital gown and back into my comfy clothes.  It was on the ride home that the pain started to creep in.  About halfway home, every bump in the road seemed to jar my collarbone.  Once we got home after picking up the kids, I managed to get out of the car, but realized that walking used my chest muscles.  And my chest muscles were angry.

For the last 36 hours or so, I've been either in the armchair or propped up with pillows in bed.  Today has been a little better than yesterday, but I think I'll need every day of the two weeks I was told it takes for full healing.

I've named my port Helga because it hurts like hell.

(If you're interested in what a port looks like - placement and use - click here for a good drawing.)

Feeling pretty good right after port placement

GUEST POST BY GISELE - Feeling Nervous

I'm kind of scared about all that's going to happen this week. My Mom is going to have so many doctors appointments, plus chemo! She has to have a port surgery, which is a surgery where they stick a port in her chest that stays there until the end of cancer! So every time I look right where the port was inserted I'll see a bump right there, and know that that bump is really a port stuck in her for a year! My Mom said that all the scars she'll be having will be proof that she did something very brave. In addition to that, my Mom is going to get chemo! She is going to go bald! Actually, I'm interested in how that will turn out. But mostly weirded out.

Gisèle


                                                                                   

We Have a Plan!

Today was a busy day.

First we met with the genetic counselor, Kayla, to discuss my family history and see what tests we needed to order.  (A full panel will be done, though only a positive result on the BRCA 1 or 2 gene would impact treatment.)  Results will come back in 2 weeks or so.

Next up, we met the nurse practitioner filling in for Dr. Saleem's normal NP.  (Dr. Saleem is the Medical Oncologist, or MedOnc.)  Haihong was... brusque.  She wasn't unkind, but she was very clinical and seemed to have forgotten that she was going over a chemo plan with someone who was new to cancer.  One thing that was important to me was that I be allowed to use a nail strengthener and dark/black polish on my fingernails in an attempt to have them not split/lift off of my fingers.  Women who've experienced the same chemo I'll be doing have used that treatment successfully, and I thought it was worth a shot.  Haihong was dismissive, saying that it wouldn't work, and she wanted to be able to see my fingernails in case there was any sort of infection.  She also seemed to dismiss my concern as me wanting my nails to stay pretty and polished, as if that would be my primary concern.  I also brought up the possibility of using cold packs/gloves to try to prevent neuropathy, and she dismissively said there was no evidence that it would help, though she didn't forbid me from trying.  I'm hoping we will meet and deal with the normal NP on my subsequent visits.  

Dr Saleem, on the other hand, was great.  She was kind, understanding, supportive, and talked to me instead of at me.  When I asked her about the polish, she immediately responded that the nail strengthener and polish could possibly help, and would at least keep my nails stronger, and then brought up the use of cold packs/gloves before I did.  She took her time with us, making sure we were comfortable with everything she had to tell us, and giving us time to ask all of our questions without interruption.

We met with Dr Miggins, the SurgOnc, before leaving, and went over the surgery options in light of the MRI results from Monday.  We also discussed next steps so that I'd have a clear understanding of what to expect.

So here's the plan:  

I'll be getting a port placed (outpatient surgery) sometime in the next few days, and will also have an echocardiogram (like a heart ultrasound) done to get a baseline on my heart since the chemo can be hard on it.  Methodist SL will be contacting me to have that scheduled.  It's likely that this will all happen Friday or Monday.

Chemo will start next week on Thursday.  I'll have 12 weeks of Taxol (Paclitaxel), once a week, to start with.  Following that, it'll be 12 weeks of AC (Adriamycin and Cyclophosphamide), 1 treatment every 3 weeks for a total of 4 treatments of AC.  That means 6 months of chemo.  If my blood counts aren't where they need to be on any given week, treatment may have to be delayed.  I'll have to be careful to stay healthy, which means everyone around me needs to stay healthy.  Lots of hand washing!  I was also given free rein to eat whatever I liked that I could tolerate.  Dr Saleem said the most important thing was to keep my energy and calories up.  I'll have prescriptions for anti-nausea medication to take around the clock if necessary, and will be given steroids and Benadryl with the chemo.

After chemo, I'll have surgery - a mastectomy on the right side, along with removal of all the lymph nodes in my right arm.  More on surgery as we get closer.

After I heal from surgery, I'll have radiation (likely to be 4 weeks, every day M-F), though I haven't yet met with the radiation oncologist.) 

About 9 months after radiation, I'll have reconstructive surgery - possibly the first of several, depending on how things go.

And that is what we know right now.  Things are starting to move along!

Monday Scans... and Some Results

Today I had a nodal ultrasound and a breast MRI.  

It was an early wakeup for someone who hasn't been sleeping well, so I was moving slowly this morning.  So slowly that I ran out of time and wasn't able to make my cold brew latte and had to go without coffee.  Not a good start.

The nodal basin ultrasound was easy-peasy, though I had to explain to a few different people that yes, I had already had the regular ultrasound, and no, I didn't need that done again, yes, I just needed the other areas checked.

The tech and the doctor both were reassuring - nothing new was showing up on the ultrasound.  They saw the funky axilla lymph nodes that we already knew about, but nothing new.  The doctor cautioned, though, that the MRI could pick up on something that the ultrasound may not.

At least I had some good news to share - nothing new on the ultrasound!

I had gone through a brain MRI before (Maybe twice? It's been a while), but never a breast MRI.  I was given a couple of hospital gowns first for modesty (goodbye to the comfy Breast Center robe!) and then walked over to a small room to have an IV placed since the MRI was both with and without contrast.  The IV tech was very nice and told me to look away as he did his job since I'm not a fan of needles.  Good thing, too, because the next few minutes were a flurry of pain, three repetitions of, "You're a good bleeder!" and the grabbing of a towel to clean up my arm when the small wipes proved ineffective.  Once the bleeding was under control, he took me to the MRI room, where the MRI tech used another towel to wipe the remaining blood drips from my arm before positioning me on the table. 

For a breast MRI, you lay facedown on the MRI table.  Your breasts are... arranged through two cutouts in the table, and your face is squashed into a padded hole similar to that on a massage table, though much less comfortable.  Your arms are stretched out above you, Superman-style, but pulled as straight as they can be without coming out of their sockets.  They are then squished inward, crunching your shoulders, as you are moved into the machine.  A lightly padded board runs along the bottom of your ribs, and another is between your breasts, making each breath tortuous.  

And then you're told to hold still and breathe lightly for the next hour and forty minutes.

When I was pulled out of the machine at the end, I couldn't move until my shoulders had been massaged and blood was flowing properly again.

But worse than the MRI itself was the call from the doctor a few hours later to go over the results.

The original tumor was 3.6cm, as seen on mammogram and ultrasound.  The MRI says that it is 4.3cm.  It's located at about 9:00 as you're looking at my right breast.  The MRI shows a second tumor located at 8:00, but deeper.  It's 2.2cm.  And there's a third, about 5cm away from the first one.  It's also located around 8:00 and near the nipple, and is 1.1cm.  The doctor is suggesting an MRI-guided biopsy to my surgeon so that we can have a better idea of the surgery options.

Additionally, the MRI noted 4 axilla lymph nodes as abnormal, with the one biopsied as the largest.

And?  A lymph node on the right side of my sternum showed up on the MRI, which usually happens only if it's involved.  It's too dangerous an area to biopsy, so the node will be noted on the doctor's report because that area will need to be included in radiation treatment when it happens.

So.

Two more scans tomorrow.  Both to see if the cancer has spread beyond the lymph nodes.  Pray, please.

The First Bill Has Arrived

The first bill has arrived.  Luckily, I had my mammogram/ultrasound/biopsy combo done at the end of December, which means the tests are all covered since we had met our deductible.  "Luckily," because the first bill was for $16,000.00.  Yep.  (It sounds better if you hear it as if it's being announced on Jeopardy... "$16,000.00!"

The rest of the bills - starting with the ultrasound, MRI, CT scan, and bone scan I have scheduled for Monday and Tuesday - will, of course, start our new year off gloriously.  We'll probably meet our deductible tomorrow.  

All of that being said, my sister has started a GoFundMe page to help us pay for the medical bills that have already started rolling in:

Click here to support Trish Lowery Breast Cancer Fund organized by Andrea Busch


I'm working on adding a link to it on the side of the blog, so hopefully I can have that up soon.  In the meantime, please share as you see fit.  Cancer is expensive.  

If you're looking for other ways to help, we'd love gift cards for HEB, Target, or Amazon that we can use for food & supplies.  (My food allergies make gifts of actual meals difficult.)  If you click on my profile on the right, you can find my email address there.  (Email if you'd like a mailing address.)

Most important - please pray.  Pray for healing, comfort, peace of mind, and strength for me, the kids, Jamie, and my parents & siblings.  This whole chemo/surgery/radiation/reconstruction thing will probably take 1.5 - 2 years.  We're going to need as much support and prayer as we can get.

Support

Friends and family rock.

Yesterday was a difficult day.  We met with the surgical oncologist and got the beginnings of our plan, and the fact that I have cancer really started to hit.  I know I have a lot of tests in the next few days and that chemo will be starting soon.  It's good to know what's coming next.  It's good to meet the people that I'll be seeing so often for the next few months or year or years... but it was still hard.

The nice thing was that when we got home, there were things waiting there that lifted my spirits.  My sisters had sent the first of what is apparently going to be many hat deliveries.  Another friend had dropped off a cozy, soft blanket and sweet card.  And another friend is starting to collect gift cards to help us purchase groceries and supplies while we're paying the mountains of medical bills that will be rolling in.

Knowing that I have people around me that care enough to send things to lift me up makes me feel like I'm not doing this alone.

There's also a million people who have sent encouraging messages on Facebook, and friends who have texted their support.  I love you all so, so much.  (And thank you for not calling.  I'm usually in the middle of figuring out medical stuff or trying to rest, and I really only want to talk to the hospital/doctor/family at this point.  I'm just tired.  But I love the texts!)

Thank you for making me feel less alone.  

Okay, We're Getting Started

The first appointment was today.  We met with Dr. Miggins and her staff for over 2 1/2 hours to go over everything done so far and to figure out a preliminary plan.

We know it's invasive ductal carcinoma, currently Stage II.  (T2, N1, Mx (unknown) - if you're into specifics.)  That staging could change after the next few scans, after chemo, and/or after surgery.

The cancer is in my right breast and right axilla (armpit) lymph nodes.  The number of nodes affected is unknown currently, but is "multiple."

The current plan:

1. Get a complete nodal basin ultrasound.  This ultrasound will look at the lymph nodes around the clavicle and breast bone to see if they are affected.  If the are enlarged, biopsies will be done.  If cancer is present there, the treatment plan will be affected.
2. Get a bilateral breast MRI.  This MRI will give better imaging of both breasts.  It will (hopefully) confirm that no cancer is present in the left breast, and will give a better picture of how the cancer is growing (toward the nipple or not) in the right breast, which will give the surgeon a better picture of how to operate.
3. Get staging studies done  - CT Scan of the chest, abdomen, and pelvis; and a Bone Scan.  These studies will show any evidence of cancer in the chest wall, lungs, liver, or bones, which are the most likely places for breast cancer to spread after it has invaded the lymph nodes.
4. Visit with the Medical Oncologist, who will prescribe the chemo cocktail.
5. Visit with the genetics counselor and have genetic testing done.  If I have the BRCA 1 or 2 mutation, treatment will change.  (A positive result - which is bad - would mean that the cancer has a much higher chance of recurrence, and that I have a very high chance of developing ovarian cancer.)
6. Visit with the radiation oncologist.
7. Follow-up with the surgeon, Dr. Miggins, about test results and to touch base about the treatment plan.

We do know that, unless the treatment plan changes based on the scans and genetic testing, I will be doing chemo first (to shrink the tumor), followed by surgery, then radiation (necessary because of the lymph node involvement).  Reconstruction will follow about 9 months or so after radiation is done.

We're all hoping the scans - steps 1-3 - can be done in the next couple of days.  If that happens, the meetings with the Medical Oncologist and Genetics Counselor could happen early next week.  My case is also being presented to the tumor board next week after the results of the scans come in, so everyone can be in agreement as to the best treatment plan.

That's what we know for now.  I don't have to decide on the type of surgery yet, because the options may change after chemo.  We do know, however, that every lymph node under my right arm will be removed, which comes with its own complications down the line.

So on to the next step - scheduling all of the appointments for scans.