This Time Around

Even though this is my second time with breast cancer, so many things are different about this experience. Aside from the obvious things — different parts of my body, a more serious stage, a different prognosis — I’m finding other differences as well.

I’m already experiencing low blood counts. I believe this is typical of Gemzar, but I have already had to postpone my third treatment because my blood counts are off. I’ve only had two treatments. I’m on a preventive antibiotic. Last time, it was months of chemo before my blood was affected.

My energy level is lower. This may be because of the Fentanyl patch I’m on, or it may be that this cancer is taking more out of me than last time. Most nights I am in bed before 9:00 and I’m asleep until around 7 or 8 the next morning. Some days I nap through the whole day.

I’m on pain medication. My original breast cancer had no pain associated with it. None. The pain of the mass in my pancreas was excruciating. Bad enough that I wear a Fentanyl patch 24 hours a day. Granted, I’ve come down to a lower dose, but the doctor isn’t in any hurry to wean me off of it.

My emotional state/outlook have changed. With an unclear and unsure prognosis, remaining positive is more difficult for me. I feel like I’m in limbo and I’m not sure what to do with myself. As a planner I prefer structure to my days, but with the gravity of this diagnosis my only job is to “take care of myself.” This leaves me kind of lost as to how to spend my time. My sense of humor has gotten darker, and I’ve become more reserved.

Not surprisingly, this last one has been most difficult to me. Last time I took on the role of fighter — I had something to beat, to get rid of. I had a concrete task. This time, it isn’t so clear, not so black and white. Instead of beating or getting rid of something, we’re trying to control the progression of it. It makes for a much more difficult fight song or cheer. Instead of “fight, fight, fight” it’s “control, control, control.” It doesn’t flow as easily.

I’m sure as time goes on, I will get used to my new normal. Taking it day by day. Appreciating the little things. Accepting that “taking care of myself” is my new full-time job. Already, I feel myself slipping into a bit of a routine, and that makes me feel a little more stable.

As with any life-changing event, this will take a period of adjustment. I know that; I just need to accept it. I need to remember that I have an abundance of support in my family and friends. I need to remember to rely on God and remind myself that He is holding onto my hand (Isa. 43:10, 13). That He will help me get through every step of this, no matter how difficult the steps might be.

Today was a rough day for me. But I talked to my husband and my mom and received reassurance, strengthening, and commiseration. Having someone acknowledge and assure me that my feelings are valid is extremely comforting. Having someone offer to help me in tangible ways is strengthening — both spiritually and emotionally. The amazing thing is that I get support like this on a daily basis from so many people. Some friends text me encouraging words. Some send cards. Some I get to speak to and/or see daily. And I thank God for all these ways that he’s giving me support. I may have a life-altering diagnosis, but I am blessed to have my support team standing with me.

xoxo

 

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The Chemo Aftermath

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I got through my first chemo. Fortunately, I didn’t have to deal with the side effect mentioned above (side note: these cards are from the amazingly talented Emily McDowell. She created a line of Empathy cards specifically for cancer patients. Please check her out). In fact, I made out pretty well the first couple days. Tuesday and Wednesday were pretty good, thanks to Steroids in my pre-meds (pre-meds are medications given before the chemo that help to eliminate and/or reduce side effects of the chemo).

Thursday was a different story. I had the flu-like symptoms I was warned I might have. My fever topped out at somewhere 103.4, staying in the high 102s Thursday and most of Friday. By Saturday morning, my fever had broken, and while I was still experiencing chills, sweats, and body aches, I was able to attend a very special meeting via live stream.  I’m hugely relieved about that.

Hopefully this flu-type side effect will improve with each dose of chemo, but for this week, I expect Monday-Wednesday to be pretty good, and then to be down for the count from Thursday through Saturday. Knowing what to expect is more than half the battle. It helps me to schedule chores around the house early in the week with the Steroids kicked in, and then to be able to rest without feeling like I’ve accomplished nothing.

It may seem silly to read that I would be worried about chores or about accomplishing things, but trust me. Chemo makes a patient feel useless enough — she doesn’t need her self-imposed guilt to get out of control. Don’t get me wrong, I’m not steam cleaning my curtains or scrubbing my floors each week, but making sure the bathrooms get cleaned gives me some control over my out-of-control life.

I’d like to give a shout-out to one of my dearest friends — I’ve known her since I was about my son’s age. Our relationship grew out of writing and we now each have a blog. Stop on over at her blog Stand Up and Live Your Life. I am honored to be the subject of her most recent post, and I encourage you to read more.

I don’t know what this week will bring along with it, but if I can find humor in it, it will be shared. Thank you so much for the prayers, cards, flowers, texts, messages, and posts. I read each and every one, even if I don’t respond. I am making every effort to respond to each of you, so please bear with me.

xoxo

First Day of Chemo, Leggy Style

We went over the results of the scans this morning. The good news is there is no other organ involvement; however there is significant lymph node involvement, especially in the area around my lungs. The course of action remains the same: Gemzar treatment. I’ll go through about two rounds of treatment and then have scans to check the progress, if any. The primary goal is to get me as pain-free as possible and to slow the progression.

When we did “chemo teaching” last week, I mentioned to my social worker and nurse Oncologist that the name Gemzar makes me think that the chemo is like royal treatment and I’d sweat glitter or dazzle and sparkle or something. I may have suggested that I might dress up in some sparkly get up. However being as hopped up as I am right now I failed to follow through on my glitter outfit.

Alas, my social worker did NOT forget. She brought me a tiara, rings, a scepter and decorated my chemo bag with gems. Oh and a princess mask. Fortunately we got pictures!

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Overall, the chemo went well. No nausea. No extreme fatigue. So far this afternoon I’m holding together pretty well. We will see how I feel tomorrow.

Yesterday’s post was a long time coming together. I spent the entire day trying to write it, but I kept falling asleep. At one point I woke up to “fffffffffffffffffffffffffffffffff” on the screen. But I am trying to write as I feel motivated. Even if it takes me all day.

Love to you all. If there are any questions you have about cancer, side effects, prognosis, symptoms, or anything else, please ask me. I love to be given a task. You can ask me in the comments here.

Love you all!

xoxo

When Words Don’t Mean Enough

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These words seem so trivial to express what I wish to convey. The outpouring of love and compassion has been overwhelming, and all three of us are in awe of your caring spirit. Friends have offered practical help — such as setting up meals for us — but also emotional help. I’ve had several friends offer to listen if I want to scream or cry in my frustration. Be forewarned, I may accept both offers.

Some of you barely know me, but our worldwide brotherhood has allowed us to have strong bonds anyway. Some of you have the ability and talent to see feelings and emotions in me that I am just discovering for myself. Some of you know just which scriptures I need to hear.

You will continue to amaze me by your insights, and please know that each and every word — spoken or written — I treasure. I may not express my gratitude fully enough. Some words may hit me so sharply that I cannot respond without losing my composure. Some words may be so truthful, I’m not ready to hear them yet. And some may simply come while I’m medicated and unable to remember. What I won’t ever forget, though, is how your words have made me feel.

 

My friends have made the story of my life.
Helen Keller

With my first foray into breast cancer, I had virtually no pain, other than what was associated with surgeries or procedures. Nothing that couldn’t be treated with Percocet. This experience is totally different. This time around there was immediate discussion of pain management. I was given Morphine almost immediately, and then Dilaudid as I was admitted.

The hospital doctors were hesitant to give me anything too strong at my release; however my Oncologist is familiar with the pancreatic pain associated with these types of cancers. He has me on two 25 mcg patches of Fentanyl, and Dilaudid 2 mgs every six hours as needed. Unfortunately, I’ve needed all of these, and sometimes I still have pain after taking them all.

We had our circuit assembly with the Branch Representative this weekend. We’d hoped to stream it, but it wasn’t uploaded yet. I really did want to attend, but I also didn’t want to risk getting sick. Plus I’m still not feeling like myself. Instead, we stayed close to home, did some personal study, and spent time together the two of us (our son went to the assembly with Nana and Papa).

Your cards and notes have already started appearing and brightening my days. I’ve gotten funny memes and greeting cards; notes of support from those I barely know. I’m reading each card, each comment. I’m listening to your sympathetic tones of voices.  It may be through a a dazed mind, but I am listening and appreciating your love for me.

I’ll continue to keep you posted.

xoxo

Life is What Happens to You While You’re Busy Making Other Plans

I’ve been busy these last weeks … planning for my reconstructive surgery, revamping a section of our shop, generally feeling good about my new meds and how they were making me feel.

Things have really been coming together, and I’ve been feeling somewhat optimistic. Other than some digestive and intestinal issues, life has been feeling pretty great.

Until they weren’t. I went to the ER last Tuesday afternoon with stomach pain. Thinking I was constipated and that it was just gas, you can imagine my surprise when the nurse told me that the doctor was admitting me.

It turned out that my liver enzymes were high, as were some things having to do with my pancreas. I was jaundiced, and was going to have a procedure put a stent into a duct in my liver.

While pathology wasn’t completed before I was released from the hospital, we did know that I had a malignant mass in my pancreas. There was also discussion of lymph nodes being involved.

Yesterday, I met with my oncologist. He walked in and put his arm around me. I leaned my head on his shoulder, and he rested his head on mine. We sat like that for a few moments before he told me my complete diagnosis.

My breast cancer has metastasized and gone to my pancreas, where there is a mass. It has also spread to lymph nodes, but we don’t know how many yet. We also do not know if it has spread to other parts of my body yet. I get my scan done tomorrow, so I should know more by next week. It is considered stage 4.

Chemotherapy is the treatment I will be receiving beginning next week.It is a three week on, one week off schedule. I’m not sure how long it will continue. As of right now, I will be receiving Gemzar. Other chemos may be added depending on where else the cancer is located.

That is all we know as of right now.

Lost in Tennessee

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Though the hurricane did not directly hit us, we decided to evacuate anyway. The kiddo has a panic attack when he hears the word “tornado,” so we thought it best to make sure he felt safe. Besides school was cancelled until Wednesday, so we didn’t need to worry about taking him out.

We left Saturday morning and arrived late afternoon. The drive itself was not particularly awful. The house was fabulous — three stories with a hot tub, foosball table, pool table, and a mini golf arcade game. We checked things out, and Allen and Brian played a game with pool while I did some writing.

For those of you who are just joining my blog, I’m a cancer survivor and I had a failed implant (became exposed got infected, had to be removed). Therefore I have prosthetics. While my right implant is still in tact, I have prosthetics for both breasts to ensure symmetry.

Prosthetic breasts are rather heavy and I find them fairly uncomfortable, especially by the end of the day. Typically, once I am home and know I won’t be going out, they come off. And if I don’t have to wear them, I usually don’t. Anyway, by around 4:30 or 5:00 I’m done with them. Saturday evening was no different.

After writing, I joined the boys around the pool table. We ate dinner and enjoyed the hot tub. In the meantime, hubs had gotten a bit of a cold and I had been bitten by the writing bug. The next morning we just hung out around the house. Hubby was feeling miserable and didn’t want to do anything. Kiddo was content on his iPad and I spent the day writing.

By Monday, though, we were ready to explore. Upon our arrival Saturday, we had seen a wax museum with King Kong on the outside of the building. Kiddo was intrigued and was unable to quite comprehend that the building itself was not wax, but the figures inside were.

It was while getting ready that I realized I’d lost my boobs. I could not find the bra I’d worn on Saturday that contained them. Though my insurance covered the expense of the prosthetics, I was pretty sure that any additional pair would need to be paid for out-of-pocket. So this wasn’t like just losing an undergarment. This was like losing a $200 dress. We were worried, but I was sure they’d turn up before we left the next day.

Side note — I do go out occasionally without wearing my prosthetics. I figured I didn’t know anyone in Tennessee so I didn’t really care that I was lopsided. And I really just wanted to get the wax museum over with so I could get back to writing.

However, by that evening Hubs and I were both getting pretty worried. Like I mentioned, these suckers aren’t cheap. Saturday morning, we searched — almost in a panic — but came up empty. I swore that I had taken my bra off as soon as we arrived Saturday, but Hubs asked if I’d even worn them Saturday. I wasn’t sure.

How does one lose her boobs in a cabin in Tennessee?

I called my parents at around 7:30 a.m. Here’s a conversation I never thought I’d have with my father:

“Um hey dad, could you go to my house and see if my boobs are there?” But that’s exactly what I said.

Being the good father that he is. He got dressed at 7:30 — without having had his coffee — and drove over to our house to look for his daughter’s prosthetic boobs. About 20 minutes later he called:

“One lumpy bra located.” he said. Evidently in my infinite wisdom, I had thought “why wear them all day in the car when they’re uncomfortable?” while at the same time packing several bras.

I continue t blame chemo for my memory issues.

Hope this made you laugh.

xoxo

The Girls are Coming Back

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Let me begin by talking about this girl — Irma. We are in the path. We are evacuating to Tennessee, renting a house in the mountains. We were in Matthew’s path last year and were evacuated for about a full week. Matthew was a category 2. Irma is projected to be a 3. We saw damage with Matthew, and we expect damage with Irma, too.  Last year, I wasn’t as concerned … our home wasn’t near water or trees, and it was a townhouse. This time around, it’s different. We bought a home this April — a single family home with lots of trees and marsh across the street. I’m trying not to freak out.

Irma is not one of the “girls” I am referring to in the post title. But since many of my readers know my general location, I thought I’d go ahead and let y’all know that we are planning to evacuate and where. If you’re reading this and thinking, “Tennessee! That seems awfully far,” Tennessee was as close as we could get. If you consider that pretty much the entire state of Florida must evacuate, plus coastal Georgia, and coastal South Carolina, it seems easier to comprehend

Anyway, to explain the “girls” that are coming back …

I am getting my DIEP Flap surgery on November 28th! 

That’s right! I’m getting the breast reconstruction that I have really always wanted to get! Initially, we went with the simpler implant reconstruction because the recovery is easier, but I was very unhappy with the results. Once the left implant had been removed, I decided to pursue the DIEP flap procedure.

We all know that health insurance can be a blessing and a curse, and this case was no different. I qualified for a Medicaid program which meant low copays and very little out-of-pocket. It also meant that surgeons who perform this procedure don’t work with Medicaid (surgery cost far outweighs Medicaid’s payout). In the meantime, my husband received a significant raise which bumped us out of the income qualifications for Medicaid. Long story short, I’m now on a BCBS plan that will cover the surgery (but means more out-of-pocket cost for us).

With the new insurance in place, I immediately called the surgical practice and got in on Tuesday. Fortunately, it looks like I am an excellent candidate! The earliest availability is the date of my surgery. I am over the moon.

Some of you may be wondering what the DIEP Flap procedure is. I’ll explain as much as I understand. Don’t ask me what DIEP stands for, though, because I can’t remember. Basically, they take the fat and tissue from my tummy and use it to form new breast mounds. It is at least a two-part surgery. The first one is the major one. The second (and any others) are to fine-tune and smooth out my breasts and stomach.

Some things you might be thinking:

  • Hey, I’ve got some fat I could donate! Thank you, but that’s not the way it works. Plus, I have plenty of my own.
  • Does this mean you get a tummy tuck? Yeah, pretty much!
  • How long will you be in the hospital? Four nights
  • Why is this surgery better? Um, see points one and two. Plus they will look more natural and be closer to my original size. I may even regain some feeling that I lost with the initial reconstruction.
  • What is recovery like? I’ll be up walking the day after surgery. I will probably be a little stooped over at first. The most difficult thing will probably be “T-Rex” arms. I will not be allowed to reach for anything or lift my arms higher than 45 degrees for a while. I will have drains, but only about a week up top and three weeks in my tummy. I can drive after all the drains are out.

Feel free to ask me any other questions about it! Also if you have had similar surgeries, please give me any tips and suggestions you might have.

In the coming months, I will be trying to strengthen my core, lose some weight, and get into an exercise routine. These things will help with my recovery and my post-surgical appearance. With the “forced vacation” evacuation, I hope to work on a healthier routine.

I am happy to report that 40 is treating me well so far. I was able to add some medications to my antidepressant regimen, and the difference is fairly dramatic. I have more energy and less anxiety. Everyday activities and chores no longer feel like mountainous treks; rather I find myself regularly checking off my to-dos with a sense of accomplishment and satisfaction. It is a huge relief to me to be feeling more like myself.

Work is fun and exciting. My self-esteem is still suffering, but with the knowledge of my surgery coming up, I am feeling a little less self-conscious. And also more motivated to get some exercise in and to eat better.

Thanks so much for sticking with me and continuing to read. I’m sure I’ll have more to write about soon!

xoxo