What a whirlwind these last 5 months have been! It’s been a roller coaster of tests, diagnoses, treatment plans, and emotions.
I’ve been enjoying these last few weeks of mostly normal emotions and life. I am feeling great and absolutely loving feeling like my regular, productive self! It is a blessing to really feel like cooking, taking care of my home, teaching school, and leaving the house.
The children are also enjoying having mom back! They are enjoying doing normal things and the prospect of seeing their friends more often.
Alaska Auroras from the morning of January 22, 2015
I met with my oncologist this past Thursday to discuss what the next phase of my treatment looks like.
To understand why we made the decision we did, you need to know these things:
- estrogen receptor positive, HER2/neu negative
- I tested negative for all 21 genetic mutations that would put me at increased risk
After surgery and chemo, patients with this scenario are usually treated for an additional five to ten years with medications that further reduce the risk of recurrence. Studies have shown this to be the most effective treatment for patients with hormone receptor positive breast cancer.
- Tamoxifen (for use in pre-menopausal women) – Blocks the effect estrogen has on cells. Therefore, tumor cells cannot feed on estrogen.
- Zoladex (for use in pre-menopausal women)- Blocks the effect estrogen has on cells. Therefore, tumor cells cannot feed on estrogen.
- Aromatase Inhibitors (there are 3 drugs in this category, but they work the same way) (for use in post-menopausal women) – Block the enzyme that turns the hormone androgen into estrogen. Leaving very little estrogen in the body to feed tumor cells.
You’ll probably notice that the biggest distinction between the usage of these drugs is the stage of life the woman is in. I am at least 15 years from natural menopause, so I obviously fall into the pre-menopausal category. However, as I’m sure you’ve figured out, I tend to be the patient that causes problems!
The drugs that I need are known for causing blood clots in people who have certain clotting disorders. The oncologist agreed with us that those drugs are too dangerous and even if I were on daily injections (no thanks) of blood thinners for the duration (remember, 5-10 years…) there would still be increased risk. In reality, she said she would not recommend this avenue for me, even if I wanted to do daily injections for that many years.
The drugs used for post-menopausal women have been studied and are not as effective when used in pre-menopausal women. They do not decrease the risk of recurrence as much as the other drugs, or as much as they do in post-menopausal women. Essentially, they are not recommended in my situation.
This brings us to the actual decision. And please know that we’ve done plenty of research as to the long term effects of what we have decided. We have not made a rash or uneducated decision. Dr. S. also agrees that this is the best option and she was actually relieved when I said yes.
We have chosen for me to have my ovaries removed. This will decrease my estrogen production by more than 80% and put me immediately into the post-menopausal category and allow me to begin the drugs that are the safest for me, and most effective, in general.
I am waiting for some paperwork to be approved, but should have a consult with the gynecologist next week. As far as the actual surgery goes, it’s pretty simple and a fairly easy recovery.
I’ll keep you posted on the details.
As I sit here in the glow of my Christmas tree, in my quiet, cozy home as Christmas Eve has slowly clicked over to Christmas Day, I am reminiscent of Christmases past. While none of my adult Christmases have ever looked the same, what with the changing of life seasons, new babies, the Air Force moving us from place to place throughout the years, long separations, new cities, new homes, and the cultural merger of Christmases from both mine and Michael’s childhoods, I would not be honest, if I didn’t tell you that this Christmas is so starkly different from anything I have ever held in my imagination or memory.
It has been a holiday season I won’t soon forget, and unfortunately that isn’t because of the magical memories we made or new traditions we tried out as a family.
This year has been incredibly difficult and full of unexpected journeys. I have shared much of that with you, but at times, things are just too big to put into words. So, those words never get “spoken.” I guess it’s easy to tell you about physical ailments, maladies, and side effects of this life saving treatment I’m receiving. But, it would be dishonest of me to tell you that things are always good. Well, things are good and I truly do believe God’s will is what’s best, no matter what, but things aren’t always good physically, mentally, etc. Does that make sense?
I struggle with all the things you’d imagine someone in my situation would struggle with, plus a whole string of things that would never even cross your mind unless you’ve experienced something akin to this. No, I’m not faced with the imminence of death or anything so drastic as that, but no matter what, even if I am healed and my body is put back together, I will forever carry breast cancer (the journey) with me. It has changed me. Some of the ways it has changed me are nearly indefinable, and some of the ways are glaringly obvious to us, but changed me, it has.
Truthfully, it has been very difficult to feel any sort of Christmas spirit or anticipation. In reality, I know, deep inside my soul that Jesus is my Savior, and I don’t really need a special holiday to remind me of that. But, there’s something so refreshing about collectively marveling in the awe of what our triune God did for us.
We don’t do it perfectly, but we do spend a good deal of time in our family working to point our thoughts and actions back to our desperate need for Him. But isn’t there something so special about a season being set aside when all believers are focusing on the same aspect of their salvation? Yes, it looks different for everyone, in every part of the world, but think about that for a moment – the multitudes of people worshiping a magnificent God who came to this earth in the form of a wee babe, born into a nation with a hostile government and a ruler that hated God, destined to life a difficult life, and in the end would die for sins He didn’t even commit… “Jesus submitted himself to this. He gave up everything.” [Pastor John Jones (my pastor)]. He did that for us.
FOR ME. FOR YOU.
I pray that my life is always a testimony to and reflective of Him. But, oh how I am still very much a sinner in need of grace.
I’ve left you hanging again and I apologize. I do post little snippets here and there on Facebook and Instagram for those of you that follow me in those places, but I sometimes forget to devote time to penning these posts. A couple of years ago, life got too busy and I stopped posting here consistently, at that time I also stopped posting on the Facebook page for this blog. My current plan is to try not to let that happen again – so go click “like” on that page (I’m working on cleaning it up and making it more functional*)! Even after my immediate cancer treatment is complete, I plan to continue blogging. Hopefully, it will look a little like what it was originally – a little bit from every area of our lives – family, faith, homeschool, military life, ideas from my kitchen, health, etc.
For now, I’ll get you up to date on my happenings over the last few weeks since my horrible allergic reaction.
I recovered from that allergic reaction in time to enjoy Michael’s squadron Christmas party on Friday, the 12th. It was a fun time. The location was great (private room at a large Mexican restaurant), the food was excellent, conversation was a nice reprieve from my daily happenings, and I even won one of the drawings!
Over the weekend, after a couple of weeks of the kids asking repeatedly (and truthfully, “Christmas spirit” has eluded me this year), we finally got the tree and a few other decorations up. It’s really nice having children who are getting older and are actually helpful. I put the tree together, fluffed it, and made sure the lights were all working, but I didn’t put a single ornament on it!! I sorted them out for the kids, but they did the decorating on their own. I think they did a nice job spacing the ornaments out and making the tree look nice. The weekend was fun. We were even able to finish our holiday baking (a couple of weeks early due to me not knowing how I would feel after chemo the following week) and assemble that little gingerbread village on the buffet table.
During the early part of the week, the kids and I were able to get all of our holiday goodies packaged up and delivered to our friends. As we were driving across the base, we even saw a young bull moose and his mama on the side of the road (this is not a rare occurrence, but still so very fascinating)!
On Wednesday, I had my fourth and final chemo infusion!! As I was leaving, all of the nurses gathered around me, gave me a beautiful card that each of them had written encouraging words in, hugged me, and sent me off with congratulations. It was very special and I was very emotional!
Thursday and Friday were fairly normal (I’m not even sure what “normal” means any more…), the kids had school, I cooked our meals, and those two days were generally uneventful.
Pretty much everything from when I went to bed Friday evening, until now, the wee hours of Wednesday morning (Christmas Eve) have been a blur. Due to the severe allergic reaction to the medication I was receiving to boost my white blood cell count (and keep me functioning mostly normally after a chemo infusion), I was unable to receive that injection this round. I have since discovered that that one injection was doing FAR more for my body that I gave it credit for.
I went to bed around 11:00pm Friday night and slept (only waking for things like the bathroom and drinks) until 3:00 pm the next day. I slept SIXTEEN hours. And it really didn’t stop there. The intense fatigue only just began to lift Tuesday evening. I also had several other side effects that I had not been experiencing. A few of them, like throat/mouth pain, brain fog, intense nausea and some vomiting could be eased with medication/natural remedies or by sleeping through them. Others, such as the bone crushing pain in my hips and legs, haven’t been so easy to deal with or relieve. I have been able to use a combination of heat, narcotics, essential oils, and movement to get some relief.
I did go in for labs on Monday afternoon and my numbers were all high enough that the NP wasn’t concerned that anything was wrong. He said I was feeling exactly how he expected and I should begin feeling better in about 2 days. That seems pretty accurate, because other than the pain I’m still having in my legs and hips, most of my other symptoms are significantly improved. I even felt hungry last night!
Considering that I titled this post “What’s Next?” I bet you’re actually curious to know that answer! Truthfully, due to all the complications and auto immune issues I bring to the table, what’s next hasn’t actually been decided yet. My oncologist is in the process of researching that and also discussing it with some of her colleagues. We do know it will be some sort of long term hormone therapy, but at this point I’m not even willing to speculate as to what the treatment will entail. The options are too varying. Michael and I will meet with her again on January 22. We hope to have more of a final answer at that point.
* It’s well past time for an update to my blog header, my icons and my Facebook cover. I’m open to options!
** I promise that one day I’m going to write out our long term plans for reconstruction, etc. It’s a lot to process and decide on and I want to make sure we’ve truly figured out the best plan for us before I write it all out.
I have had a rough last 7 days. I had some weird viral thing that involved my tonsils and a stuffy nose last weekend, along with a severe migraine. I spent Friday on the couch and basically watched Netflix all day. I am so thankful Michael had a 4 day weekend for the Thanksgiving holiday, otherwise, the children and I might not have survived that day.
Saturday I gradually got better and by the end of the day was feeling pretty good.
Sunday was mostly normal!
Monday I was feeling a little blah and kind of puny, but never could pinpoint what was bothering me.
Tuesday I woke up COVERED in the itchiest, most severe hives I’ve ever seen anyone experience. I treated the best I could with oils, salves, and OTC meds. I already had an appointment scheduled with my GI Doctor for that afternoon, so I was just toughing it out until I could see him. Shortly after lunch I started having some mild upper back pain and my resting heart rate was over 100. I did some research and determined that it probably wasn’t a heart attack since I had allergy symptoms, too. Then 2 hours before the scheduled appointment I received a call from the GI clinic that they had an emergency and were shutting the entire clinic down for the rest of the day.
I immediately called my oncologist to see if they could get me in as the pain in my back was progressively getting worse. They fit me into the schedule and I called Michael to come home from work to take me. We were both slightly worried by this point, but not enough that either of us truly thought it was my heart.
Once at the oncologist’s office, the PA agreed that it did seem to all be part of the allergic reaction, and after discussing it with the doctor, they decided to send me to the ER in the building next door just to be on the safe side.
By the time the nurse had wheeled me over there, they were waiting on me because the PA had called and told them what was going on. By this point my pain level was at about an 8 out of 10. I had a normal EKG, normal chest x-ray, and normal abdominal CT. I also received several different medications over the course of a few hours in an effort to determine the root of the pain and hives, rather than just relieve it. Antihistamines were the winner – ALL of my symptoms went away with a large dose of it. This gave them the answers they were looking for.
Unfortunately, the medication that everyone believes I’m reacting to has no way of being counteracted and stays in your body for about 10 days from the time it is administered. I received my injection last Wednesday. One of the infusion nurses was telling me today that in her 7 years with this practice, she has only encountered this reaction one other time… That’s me, always the anomaly.
Wednesday was tough and I kept medicated and barely aware all day, I did get in to see my GI and after telling him the saga, we came to the conclusion that I didn’t have this reaction either of the two previous times I have received this injection because I was already on daily high dose steroids due to the ulcerative colitis. However, with this injection I had already finished those steroids which allowed my body to be vulnerable to the allergic reaction. I have probably been allergic to it all along, but it was masked by the steroids.
In the ER Wednesday evening
Today (Thursday) comes along and though the pain in my chest and back has mostly subsided, the hives are even worse than they were before, and the prescribed medications aren’t even touching them. They had also crept into my face, my eyelids, lips, and tongue were itchy. So, I called the oncologist and got in this morning. Saw the NP this time, and he also agreed with all the previous findings. I was SO desperate for relief at this point (I had tried all sorts of concoctions, essential oils, sprays, salves, etc. with either very temporary or no relief) that after we discussed what medications he wanted me to try he took me over to the infusion room were I received IV Benadryl, IV Pepcid (apparently it’s also an antihistamine), and a large dose of steroids. I felt relief within 15 minutes of the Benadryl being administered.
However, it hasn’t been complete relief. I definitely still have hives, just not as severe. I’m not out of the IV window of effectiveness yet – though they are starting to wear off and I can tell – and I am only able to start the new medications as they each reach their interval limit from the IV dose I had. I just took my first dose of Claritin, so we’ll see how they all work. I have so many alarms set for all hours of the day and night to take different medications at different intervals…
I am incredibly thankful for the friends that have stepped in to watch our kids this week and even take care of dinner a couple of nights. You know who you are and we certainly appreciate you.
And one last tidbit – tomorrow is my 34th birthday. Dealing with a severe allergic reaction isn’t how I envisioned spending my day. Well, really I never envisioned anything that I’m going through right now, but not wanting to crawl out of my skin would be a nice birthday gift!
Would you please keep me in your prayers that the medication that is causing this reaction will clear my system quickly so I can get permanent relieve from it. Also, due to me not being able to have this medication again, there is a chance that my next, AND LAST, chemo infusion on the 16th, will cause me a lot more trouble, because I won’t be receiving white blood cell booster that has kept me so healthy thus far. Please pray that all of the immune boosting things I’m doing at home will be enough to get me through without too many problems.
I have to admit, it’s been a bit difficult at some points this week to remember that there is a much bigger plan in place and I’m just a small part of whatever God is doing through this journey. Please pray for me to continue holding on to that truth.
I guess when I’m feeling decent I forget to update everyone!
I’m very thankful that I’ve been feeling mostly normal lately. This latest chemo infusion treated me much better than the first. I still had all of the same side effects, but they were much less intense this time. By the time a week had passed I was mostly normal again. I’ve had a few lingering headaches and now have insanely dry, flaky skin and a ridiculous rash on my face, but I can live with those things.
Surgical healing is great. The incisions look good and are healing well. I’ve had no complications or setbacks and have about 95% use of my arm and muscles back!
We have had an interesting run with some illness over the last couple of weeks.
Back when I had my surgery the kids stayed with some friends. Well, they all went to Awana at those friends’ church that night and little did they know, but they were all exposed to a nasty stomach virus while they were there. The day after I came home from the hospital Eli got sick with it, then one-by-one that entire other family of 7 got knocked down with it (along with a lot of other people that were at Awana that same night), but no one else in my family got it. Or so we thought… Fast forward TWO whole weeks and Rachael came down with it on a Thursday night, at the same time Michael was coming down with a cold and I was immune boosting the heck out of all of us, especially me. As Rachael was recovering from that stomach bug she caught Michael’s cold and got some nasty respiratory junk. THEN early Tuesday morning Jacob got sick with the stomach bug.
While there’s not much that can be done for a stomach bug, I hit Rachael really hard with essential oils, elderberry syrup, vitamin c and tried to force some nutritious food into her and she finally began to improve. She was very sick for those several days and basically slept from when she first got sick Thursday night until Tuesday morning when she woke up a normal, rowdy 6 year old. I was very thankful Michael had a 4 day weekend for Veteran’s Day.
Everyone is healthy now, yet it appears I may have the beginnings of that cold.
Since everyone was well, we were able to do a bit of exploring last weekend. We actually just set off on a meandering drive, but we can never simply drive and look, we always have to stop and explore – even if we aren’t all dressed appropriately for the weather! We stopped to explore the frosty landscape and frozen Reflections Lake near Wasilla, Alaska at sunset. That’s not snow on the ground and trees, we actually hadn’t had any precipitation, it’s all frost. The way the frost settles here causes it to actually build up and it eventually looks like it has snowed. The ice crystals that form are so beautiful.
I guess the last thing I should update you on is the radiation situation I mentioned a couple of weeks ago.
I did meet with the radiation oncologist. Prior to our meeting he had spoken to three other radiation oncologists to get their opinions, my surgeon, my oncologist, and had even contacted the pathologist to sort out a discrepancy in the pathology report. We discussed all of the pathology findings – things like the size of my tumor (1.3cm diameter), proximity of tumor to the outer edge of the breast tissue that was removed (9mm), lymph node involvement, risk factors, pros/cons of radiation, and the radiation procedures, etc. In the end he felt comfortable saying that if I wanted radiation to feel better about my risk of recurrence, it would be appropriate, but that if I declined, that would also be appropriate. Basically, I have a rare situation and there’s no black and white with my type of situation, only a lot of gray, so either way we decided would be appropriate and he wouldn’t think I was making a poor choice by declining.
After consideration of all the findings, etc. we have declined radiation.
Dropping off their Operation Christmas Child shoeboxes!
I have another chemo infusion this coming Tuesday.
We have also made a decision on the route we’re going to take for reconstruction, but that deserves a post of its own. I’ll try to get that put together in the next week or so.