Dreaming in Sci-Fi and My Year of Health

Well, this is it. I am 33 today. I am healthy, happy, and cancer-free. I have a perfect family, amazing friends, and a great love-life with our Creator.
Awful things happened this year. Great things happened this year. Things that would change me forever. Things that would remind me that I don’t know how long forever actually is.
I am not the same person I was when I turned 32. I am now stronger and bolder, but also weaker and more vulnerable.
Everything about me is older now. I just noticed that my profile picture on Facebook is unrecognizable. I “can’t” change the picture because I don’t like the updated photos I’ve been posing for. But the truth is, I don’t like the girl I see in those old pictures either. I was so foolish and shallow then. I miss the freedom to live like that, but carry a strong distaste for that lifestyle at the same time. So why can’t I say goodbye to her?
Maybe there are deep issues at bay here. Or maybe I haven’t fully embraced the two new roles I fell into this year: 1) terminally ill mother of two, and 2) miraculously cured child of God. I don’t want to ever go back to the first, but you can’t have a former without the latter. Just like I can’t go back to the “before” picture of me without dabbling into the “after”.

 “He has made everything beautiful in its time. He has also set eternity in the hearts of men; yet they cannot fathom what God has done from beginning to end.” Ecc 3:11

As you likely recall, I received my diagnosis at the beginning of the last holiday season. At the time I tried desperately to embrace Thanksgiving and Christmas as gifts of special bonus time I could spend with my family while knowing it would be among my last. Those holidays were HARD. God carried me through them but I can barely keep it together remembering my sorrow. At the time I thought that nothing could ever relieve that sadness for me. That even if somehow God healed my “incurable” cancer, I could never release the heartache of living as if my time was limited. All our time IS limited, no matter what any doctor says. But I am ecstatic to report that while celebrating my day of birth today, I never thought about my day of death. I don’t think I’m invincible, but I don’t waste my time thinking of how I’m not.

“Man’s days are determined; you have decreed the number of his months and have set limits he cannot exceed.” Job 14:5

So, on this day we celebrated my 33 years of life and began a dedicated year of health. It is more than safe to say that Year 32 included the lowest valley of my physical health thus far. There were plenty of things beyond my control, but I can control a lot of physical issues that can make me healthier. Not to make me live longer, God is the one who numbers and knows my days. But I see no reason that I cannot be the healthiest I have ever been this year. Physically, mentally, and spiritually. I have been praying about and meditating on criteria that would demonstrate those achievements, as well as small daily goals that will help me get there. My tentative decisions are to run a 5K in 23 minutes or less (in peak physical condition before I ran them in about 24 minutes), to write a first draft of my next book (discussed below), and to read the whole Bible with a deeper study than usual. I hope to accomplish these before my next birthday. If God intervenes I will have to change them, but I’ll keep working on the daily goals to achieve them on His timeline.

“All this I tested by wisdom and I said, “I am determined to be wise”–but this was beyond me.” Ecc 7:23

I rarely remember my dreams, but when I had both children I was awakened so often in the middle of them that I would recall what had been going on. I was so happy then. Time and time again I would wake up in the middle of a “sitcom”. It was almost always Seinfeld (which had ended years before), and I was dreaming of entirely new, hilarious story lines. I sometimes couldn’t fall asleep from laughing so hard. Times have changed a bit since then…I now dream in Sci-Fi. What’s that about? I have two recurring dreams that include tons of supernatural events. Nothing God-related, by the way. I don’t know what else to do with them so I’ve started plotting them out for my next book. I am generally the last person to write Science Fiction, given that I do not read it or typically enjoy such stories. But I plan to write a bit each day and finish at least one draft this year. I will NOT rest until this book is one that I am extremely proud of. I really enjoyed writing my last one, but I was not proud of the end product at all, and that made it impossible to market. So, I’m not going to waste the extra time God gave me on earth, writing some nonsense I can’t drag myself to talk up. Anyway, I hope this is the beginning of a fun, new adventure, and I’ll keep you posted on the progress.

“I know that you can do all things; no plan of yours can be thwarted.” Job 42:2


Updates and Surgery

I am doing great, praise God! I saw Dr. Rassam last week and he was back to his old self. A few visits ago he had changed his tune from saying I had a miraculous recovery, to saying we were just managing the cancer well. I have a little PTSD from all the bad news at this point, so whenever I walk into the place I am tense until after I see him. For the past two visits though, he has been back to normal. On both occasions he poked around on me and said, “I might start believing that you are actually cured of this too!”. This is the highest praise and confidence anyone could expect, I think.

I was sure he would send me for a PET scan, but wrong again. He had two types of cancer marker tests done. Both for breast cancer, but one was a new addition, for people who already went through treatment. The CA 27.29 test (the one I’ve had done before) has a range from normal people of between 0 and 38. Last time mine was 26.5. This time it was 14!!! Zero is not necessarily the goal, because it can be good to have a few. The CA 15.3 test is the new one and I think the range for normaly people is 0 to 25, and this was 10!!! Hooray!!!!

I was waiting to hear responses before mentioning this, but I think I will not get any…for those who wondered, I finally sent notes to some of the doctors who told me I’d be dead soon. I couldn’t get the right email for the one at Mayo so didn’t send his, but did get one to the genetic counselor there.  I told her about my miracle and she responded, “I’m so glad you’ve had such a positive reaction to chemo!”. That’s fine. I sent a nice note to Dr. Litton but she never responded at all.

I started Tamoxifen and so far, so good. I think it acts as a stimulant for me–I’m being more productive with less fatigue. Unfortunately, I’m unable to sleep at night, too. I’ve always struggled with sleep, but lately it had been a bit better. Now it’s taking me 2-3 hours to fall asleep. I see Dr. Rassam in a few weeks as a follow-up, so maybe he’ll prescribe me something to sleep if necessary. I feel extremely, outrageously blessed by the lack of unwanted side effects from the Tamoxifen. I know it takes longer for them to develop with some people, so please pray that mine will continue to be awesome.

I got a call from Dr. Rosenbaum’s office today. He is the plastic surgeon in Gainesville that I’m going to see about getting DIEP reconstruction. His assistant said his openings were filling up quickly, so she wanted to pencil me in for surgery now. NOW!!!! Not 1-2 years away like the more conservative doctor I saw here. NOW as in, over Thanksgiving or Christmas (the only 2 openings he has left this year)!!!!! I wanted the Thanksgiving one, because that would be basically a year from the time I was told I was dying to being entirely healed and reconstructed. However, I think Yaacov and my mom (the official helpers) will be more available over Christmas, so we’ll probably do that. It’ll still just be 13 months for all that.

For those of you who haven’t seen me, my hair is looking good. I’ve had two haircuts now, and the pixie cut style I have looks intentional. A lot of people even prefer it to my longer hair, but I think that’s because it’s so different. Strangers stop me all the time to compliment me, so that’s nice. I plan to still grow it out, then will look back at pictures and decide what was best.

I guess that’s it. “Through Him, therefore, let us constantly and at all times offer up to God a sacrifice of praise, which is the fruit of the lips that thankfully acknowledge and confess and glorify His name.” Heb 13:15

DONE with cancer treatments FOREVER

It’s official, I’m done with radiation! So, if you’re keeping track that’s: Chemo, surgery, and radiation ALL DONE! All I technically have left is reconstruction and Tamoxifen, which is a drug I will start soon and am expected to take forever. Please pray with me that I have no side effects from it. If I do, plans might change.

It was nice to end treatment at Dr. Bolek’s office today. When I finished chemo I knew the people better, but the attitude was, “see you when it comes back”. At the end of radiation it was more of a “keep in touch” style.

You can probably guess how nostalgic this all makes me. Everything has completely changed, yet it is all still the same. Ten months ago, my biggest problems were so minor they were embarassing to even discuss with real people who had real problems. Since then, my problems became so insurmountable that most of these “real people” couldn’t discuss them due to feelings of inadequacy.

I guess I find myself back at the beginning now. I believe I was permanently and perfectly healed of “incurable” cancer, so I am not dying any faster than anyone else. God did it all, and His burden is easy, His yoke is light (Mth 11:30). All I had to do is pray and show up…so why do I feel like I’ve been through a war?

At the beginning of this blog I wrote a bit about how I felt like such a kid, saddled with a death sentence I could barely read, let alone “live” with. How I yearned for someone to guide me through it, to drown out the doctor’s bad reports with assurances that with God, everything is possible (Lk 18:27)! God gave me what I needed during the dark times, it just wasn’t always what I wanted. His will and plans are perfect though, and obviously turned out better than they do for most, so I have no right to complain. I wish I could say I feel light and airy after all this, because I learned how much I can trust God, and all the extra time I’ve been given is so freeing. Instead I feel…tired. Old. Worn out and broken. Ugly (inside and out). I’m impatient with the kids, disinterested in the mundane details of life.

Maybe I romanticized the old life I had, and now that I won the chance to keep it I’m unimpressed with the reward. Or maybe I just need a nap. I will have to get back to you on that one.

I would be a worthless hypocrite if I let myself drown in my (unjustified) self-pity now. My choices are to continue feeling sorry for myself, or to get it together. The word is clear: “Rejoice in the Lord always. I will say it again; Rejoice!” Phil 4:4. So, I will praise Him not just for His miraculous healing, but also that I got through all those treatments with minimal side effects, and for the chance to bond with so many great people throughout cancer. Both my parents proved themselves to be very dedicated by moving (Dad, temporarily; Mom, permanently) here to help babysit, and SO many more people than I could have imagined reached out to us in a variety of ways throughout cancer. I might not be more patient or kind than before, but I am stronger in faith, and that will help me more in the future. I have heard from a lot of people how my experience has changed their faith, and even one of those stories makes it totally worth it. We also got out of this without monetary setbacks, which is amazing given the huge expense of cancer treatments. Finally, I learned a lot about myself, human nature, and the nature of God, that will change me forever. I don’t want to die anytime soon, but I’m much more content with the idea of it now than before. I know I can trust God to take care of my family, and that is true whether or not I’m present.

I had a really hard time keeping up with formally thanking people, and even went through a time where I met so many people I couldn’t recall their names or even meeting them. So, from the bottom of my heart, no matter how much (or little) I’ve shown it, I really, really appreciate every email, every card, every note, every meal, every dollar, every gift, every thought, every blog reader, every kind word, and every prayer that has been shared with me or on my behalf. I am also so sorry to those I’ve unintentionally snubbed or forgotten to thank, etc. I just love you
all and have learned how to be more loving by the way everyone has supported and interacted with me throughout this time.

“Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is
pure, whatever is lovely, whatever is admirable–if anything is excellent or praiseworthy–think about such things.” Phil 4:8

Everything you NEVER wanted to know about a mastectomy

I’ve mentioned tidbits on here about my mastectomy but I know a lot of readers will be involved with their own breast surgeries at some point so I thought I’d give more detail about what to expect and how to prepare. It is extremely long, because I wanted every bit to be in one place.

There are a ton of sites where you can find things to do to prepare, but the ones I saw didn’t explain things well. I’m sure these surgeries vary a lot by location and type, but some truths are consistent.

I had what was called a bilateral mastectomy and lymphnode removal, which just means both breasts were removed. On one side, 11 lymphnodes were taken. I had cancer on just one side, but due to my BRCA status and size of the original tumor, it was very likely to spread to my other side anyway. It is also very difficult to “match” a real one during reconstruction, so all-around I felt better with having both removed. In addition, after a mastectomy you don’t need mammograms (usually), so that’s one less thing I have to do (and stress about) in the future.

Many people elect to have just a lumpectomy instead of full removal. The original size of my tumor was 7 cm, so a minimum of 1/3 of the breast would have been removed, which would require reconstruction or weird pads for the future. As you know, I was cancer-free by the time I had the surgery, but because of the stage 4 aspect, Dr. Rassam recommended the full mastectomy in case the cancer returned and could not be reduced (this is called a hygenic mastectomy). Blah blah. I just prayed about it, and the data were very clear that the mastectomy for my tumor type was the way to go. God made me love research for a reason, maybe this was it. I felt fine going through with it.

Radiation also goes smoother without breasts.

If you are ever diagnosed with breast cancer, search and read a lot about the recommendations for your specific type. Your cancer will be tested to see if it is sensitive to estrogen, progesterone and her2. If it is not sensitive to any of the three, that is called “triple negative” and treatment options are more limited. Mine had a slight estrogen sensitivity, and was negative to the others. Anyway, this status and the size alters the effectiveness of lumpectomy and mastectomy. The “worse” cancer you have, the more likely it is that you need a full mastectomy, and sometimes doctors don’t tell you this because they want to spare you emotional pain. But the emotional pain is a lot worse if your cancer comes back. I’ve heard of many such cases, and the person always regrets just getting the lumpectomy the first time around. Regardless, there are a lot of studies on the importance of each type of surgery, and the results differ based on the details of the specific breast cancer. This is, thankfully, one very easy decision to make if you care about the data.

Proverbs 2:6, “For the Lord gives wisdom, and from His mouth come knowleddge and understanding.”

If you’re very sensitive or completely thrown off by the prospect of a mastectomy, it might be that you could have a lumpectomy first, then when  you’re mentally prepared have the mastectomy. You might be able to have that at the same time as reconstruction, which is a LOT better, mentally. I really wanted Dr. Crooms to do my removal though, and a guy in Gainesville is my top choice for the reconstruction, so on top of no one offering the lumpectomy first, I did it separately.

There are all kinds of mastectomies and reconstruction. There are skin and nipple sparing (they sew your nipples to a different part of your body and “save” them for later!) removals, but the plastic surgeons I spoke to requested that my skin be pulled very tightly because that’s better for radiation. Apparently the radiation permanently ruins your skin and tissue, with results changing more for months after radiation ends. So my tissue and nipples were all removed, and the skin pulled taut. When I get reconstruction later I will have new skin put on to replace that.

Some people are good candidates for implants, but I wasn’t. I thought it was because of having radiation but I know of someone who got them with radiation, so it might be up to the doctor. I didn’t want implants anyway, because there are a lot of options now of how the plastic surgeon can use my extra fat to create new breasts. I’m hoping to get one called DIEP, which is when they pull off my stomach muscles, dissect the fat off, then put the muscle back on my stomach. They would give me a tummy tuck and use that skin to create the new ones!!!! I knew I was saving all that tummy fat for something!!!! If I don’t have enough fat (yeah, right!), they will also use an implant.

So, the DIEP sounds great, except that if I was getting implants I could have had expanders put in during the mastectomy. Over time, they are filled with liquid to stretch out your skin, then eventually are replaced with the implants. The point is that after a mastectomy you have something there instead of being so naked (more on that below). That would be awesome and after my surgery I desperately wished I had found someone willing to do that for me. However, a girl who had that surgery around the time of mine just had to have an emergency back flap procedure because something went wrong with the expander. She really didn’t want that procedure done, and was totally unprepared to have to race to the hospital and get it done. Plus, they say those expanders hurt quite a bit.

I read that I would need sports bras that opened or zipped in the front, but I couldn’t find them. It isn’t what you really need anyway. You need to order mastectomy camisoles and sleeping bras with breast forms. You need them because it will probably be 1-2 months before you can wear real prosthetics but you can wear these forms (one size fits all, they’re like little pillows) home from the hospital. They actually provide a little padding that helped me with comfort. They are NOT all the same, so order them with plenty of time. TLC is a common cancer website with some good products, but plenty of bad ones. It can be really frustrating. You can remove the forms and use them in many tops. They don’t touch your skin directly so I was fine with 2 sets. I heard the hospital normally gives you one camisole and forms to wear home, but I didn’t get anything. I found these brands to be good: Too Beautiful (the cutest, by far), Elita and Amoena. I bought a TLC brand open-front camisole and forms, and it was the WORST. AWFUL. Remember that the camisoles/tank-tops that open in the front are helpful at first, but they usually need to be worn under something. Mine ended up looking bulky so either get a smaller size or more sleep/sports bra types. Make sure you own at least one top with a drain holder for the beginning.

Someone lent me a drain squeezer. You can see them at http://www.tube-evac.com. Unfortunately I can’t tell where to buy them but it is worth contacting them (Mayo Clinic just gives them out). It was AWESOME and very helpful. I cannot tell you enough how great it was. Squeezing drains doesn’t seem like a huge problem, but when you use a squeezer you can’t stop smiling from the improvement.

Sometimes it’s better not to know what to expect, or what could go wrong. But you obviously still need to plan for things like childcare or work for after surgery. Make sure to ask your surgeon all about his plan for what you can lift and when. Dr. Crooms is of the “do what you can handle” school of thought, so I didn’t have stipulations. But some peope get very strict guidelines that could change your plans.

Make sure to get mentally prepared for the surgery, but I don’t know how to do this besides through prayer. So, get to it.

“Don’t worry about anything, but in everything, through prayer and petition with thanksgiving, let your requests be made known to God. And the peace of God, which surpasses every thought, will guard your hearts and minds in Christ Jesus.” Phil 4:6-8

If you’ve had other surgeries, this is pretty much the same. Dr. Crooms is a general surgeon so mine was done at the Surgery Center of TMH. Incidentally, some people specialize in breast surgery. I’m sure they’re great, but EVERY time I’ve shown a professional my scars he has wanted to know who did the surgery and remarks at how great it looks. So, if you’re local, go to Dr. Crooms! If you’re not local, you could still go to Dr. Crooms! Otherwise, don’t automaticlly balk at the prospect of having a general surgeon. DO talk to people and get their experienced recommendation though.

I had the typical procedure, including a pre-operative appointment a few weeks before surgery, then the day before the procedure I called for the time and instructions on how to prepare. It was just no food or water after midnight. At the hospital I got the IV quickly and hung out with my mom for a bit. The scary part for me is always when they wheel me into the waiting room, where I’m all alone and completely sober. This time they let me wait in the pediatric surgery room because that’s private, in case he wanted to come in and mark me up beforehand. The last time I had to wait in the other surgical waiting area and I felt like a cow being corralled with the rest of the herd. A nurse said I wouldn’t remember that part so I guess they assume people will be out of it and they can treat us however they like. But I remember every second. Every embarassing question they asked the men around me, etc. It was scary, sad, and very lonely.

Anyway, in the pediatric waiting area there are paintings on the ceiling, signed by patients. It was really sad to think of the children who had waited in that room, so scared, before.

The surgery was a few hours and I woke up in considerable pain. I didn’t know how much pain to expect though, so when a nurse asked I told her I was fine (I meant that I could handle it while she got me medicine). When I finally was about to scream from the agony she said, “can you still not feel anything?” and I realized that they’d really thought I wasn’t in any pain at all. She gave me a morphine drip that I could activate every 7 minutes. I used it frantically, afraid to even sleep in case I would awaken up in severe pain. I thought I needed to let the morphine build up in my system but It turned out I didn’t need it at all. The pain never got as bad as it was right after surgery. After about a day I figured out that I wasn’t even in pain and didn’t use it again. They don’t let you off the IV or oxygen until you’re off the morphine and IV drugs, so it’s a good thing to get off it.

I stayed all 3 days there, because I thought going home would be too hard to deal with the kids, etc. It probably would have been fine but we’ll never know. This type of surgery is not the same as when you have a child though, so my mom stayed the first night to help with all the cords/bathroom trips, but otherwise I stayed alone.

Isaiah 40:29, “He gives strength to the weary and increases the power of the weak.”

The nurses took the bandages off before I left, so I couldn’t hide from my mutilated body. I had a drain on each side and maybe 60 staples. They taught me to empty my drains and record how much fluid was removed, but I never reported it to anyone. Nurse Karen at Dr. Crooms office just checked me out then removed the drains at my first follow-up appt (1 week after surgery). She also removed my staples and replaced them with steri-strips. In case I haven’t mentioned it, she is one of my favorite people. She taught me some exercises to do to improve my range of motion too.

I holed up in our bedroom for almost a week after surgery. I just sat in the dark watching tv. I imagined spending a lot of time with God during this time, but mostly felt numb and a little abandoned by Him. He snapped me out of it one day though and that was the only depressive-type of episode I had about it.

I was not ecstatic that Karen made me start “exercising”. I hoped bedrest would be on the prescription pad, not a bunch of uncomfortable moves. I did them a few times a day for a few days, then petered off. I at least try to do some extra stretches as I’m sitting around. I ended up with full range of motion in my right arm (no lymphnode removal), and almost full range in my left arm. So, God is awesome and maybe my full-time job of child-rearing works my muscles well.

The most helpful thing I learned while recovering: Karen said, “it’s going to feel like you’re doing something wrong or pulling out your stitches”. That was VERY good to know, because that is EXACTLY what it felt like. It’s actually just breaking down scar tissue, but I feel it ripping and it definitely seems like I should stop. Instead I know I should keep going.

There is gross and weird stuff going on now. I don’t look like you’d expect–I imagined looking like a man, but it’s worse than that. I look like a mutilated person for sure. People were created in God’s image, and He did NOT look like this. I still have my post-pregnancy fat stomach, but as it goes upward I actually have a “two-pack” of muscles that jut out. If my stomach was flat this might be normal-looking, but as it is is creepy.
Next–you know that crevice between everyone’s breasts/chest muscles? Cleavage, I guess. Well, I still have it. I guess it’s bone or cartilage, so I have that indention, and the outsides of that protrude from the middle of my chest. Then it all sinks in around it.
Finally, the GROSSEST is so bad. I would actually put a picture on here because I feel like an alien already, but I wouldn’t want it to be banned from the internet due to the yuckiness…Are you ready for this? When I move a certain way when getting ready, it makes my tiny pectoral muscles flex. They are the size of ping pong balls. The rest of my chest stays flat, and these little golf balls pop out, very similar to “bug eyes” that might burst out of a cartoon character’s face. I’m probably not describing it well, but it is SO weird and icky.

That’s all I can think of. I’m so fortunate and blessed to have been healed of this horrendous disease that I don’t feel sorry for myself when I see the scars. I just feel joy that I am a child of God, and that this gross body is just temporary.

2 Cor 4:16, “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.”

Make sure to ask any questions I didn’t answer while it’s all still fresh in my mind! Also, add any helpful tips from your own experience to the comments section!

ADDED 8/9: If you live in Tallahassee, you can go to A Woman’s Place at TMH for prescription prosthetics. It’s a little complicated but much easier than dealing with online purchases, because there are so many types, materials, sizes, and shapes to pick from. At A Woman’s Place you call them and they arrange for a prescription from the surgeon, a referral from the general practitioner, and a fitting 4-6 weeks after surgery. You can try everything on there and let you take some things home, ordering the others for you.