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.
Surgery: I am feeling great! Praising God for how wonderful it has been to have so little pain in this healing process.
I saw the surgeon this past Friday for my follow up. He said everything looks great and was even able to remove my drains! Sleep has been much easier since then.
I’m healing well, and have regained approximately 75% range of motion in my left arm. He released me from any restrictions and told me I could return to whatever activities I wanted, just use common sense and stop if something hurts. I won’t need another follow up with him for three months.
Late October sunrise
Treatment: Today (Tuesday) I met with my oncologist to discuss the next steps in treatment. We decided that continuing chemo and finishing the original plan of 4 treatments (I’ve already done 1) is what will be best in my situation. I am doing very well with the ulcerative colitis and there doesn’t seem to be too much concern that I’ll have more issues.
Chemo will start back up tomorrow, Wednesday, November 5 with treatments being every 3 weeks. Barring any complications, my last treatment should be on December 17. There will be other, more long term (likely 10 years), hormonal treatments to follow chemo, but my oncologist hasn’t completely decided on the best treatment course for me yet. I’ll tell you about that once we’ve got it all sorted out.
I will also meet with a radiation therapist on Friday, but it really is only to make sure they agree that I don’t need any radiation treatments. The results from the pathology on the breast tissue do not seem to indicate a need for radiation, this is more of a precaution for the future.
Daily life: It feels great to be wearing normal clothing again and to be able to get myself into (and out of) most pull over tops. I also took my first non-supervised shower today!
I am back to most daily life activities. I can cook, teach school, do most household jobs (though some do require a little modification or help), drive, and generally be my normal self. I have very few limitations and they’re things like lifting heavy items, bending/twisting/stretching certain directions, and I’m still very skittish about most close physical contact – so don’t be offended if I step away from you or flinch if you try to hug me!!
Early November sunset
Our new community here in Alaska has been amazing! I told you earlier this week that we have received incredible support from so many different people and groups, but I haven’t told you about the Eagle River High School volleyball team (we live in a small community called Eagle River, just north of Anchorage)! Today, I’m going to share that story with you.
In September, a friend of ours, Kim, contacted us asking if we would allow her daughter’s high school volleyball team to support us financially through their game day breast cancer awareness bake sale donations. This isn’t the first year they’ve done this, but I believe it is the first year they’ve chosen an individual, rather than a charity or local organization. The parents, coaches, and players provide baked goods at the concession stand during each home game and they are sold for a donation. At the end of the season, the proceeds from all the the games are then given to the charity or person they have chosen to be that season’s beneficiary. This year, that will be our family.
It has been a true blessing to see this in action. The day following each home game, Kim has dropped off all the remaining baked goods to our home. Our children have loved having so many goodies and desserts available! I think they’re going to miss that since volleyball is now finished. The ladies on the team have also given several different goodies to our children. They have received school spirit items and even hand made candy leis last night (the night before Halloween).
We were able to attend three games and cheer these young ladies on! One game we attended was “Pink Night.” This was a little out of my comfort zone as they actually introduced us to the crowd, told a little of my story, and presented me with a beautiful bouquet of flowers. The players, coaches, and their families went all out on this game and decorated or “pinked out,” as they referred to it, the entire gym.
This experience has been incredible. To see a group of high school girls, their coaches, and their families truly making an impact in the community is refreshing. They have done this so selflessly and it has been an honor to be part of their circle.
Coach Lindsey, the head coach, was also interviewed by Alaska School Activities Association and they’ve written a wonderful article about what this team is doing. *There are a few mistakes in the article – 1) our daughters aren’t friends, it’s us parents who are friends!! 2) Sierra Perry is a right side 3) The check will be presented after this weekend’s tourney and isn’t the amount quoted in the article. However, even with these mistakes, the article is well written and really captures the hearts of these girls.
It is my prayer that these players, coaches, and families take away much more than a sense of service from this experience. I hope it truly resonates with them that breast cancer can happen to any woman (men, too) at ANY age. Breast cancer awareness is so much more than being aware that breast cancer happens. It is about knowing your body well so that if a change occurs, you know and can have it checked out.
Lady Wolves, you have been a blessing to our family and we are grateful for each of you. Thank you.
Fancy sign that was above my hospital bed.
I am blessed!
Though this journey has not been something I would consider easy or one I would have chosen, I can honestly come to you and say that I am blessed and completely covered in prayer. I could not have imagined the outpouring of support we have received.
And that support hasn’t only come in the form of prayers. We’ve received so much in the form of tangible support and help that I have have been amazed. Child care, meals (so much food), care packages with all sorts of goodies, drop ins, calls/emails/texts, gift cards, and a huge care package of fun stuff for the kids are the things I can think of that have been provided that have helped us all tremendously. These things not only show us that friends, family, co-workers, and even friends of friends are eager to help, but they truly do brighten our spirits, relieve some of the how of daily life and really give us peace that we’ve connected ourselves with people that will love on us. I know this really shouldn’t come as a shock to me because, in truth, I do the same things for others. I guess it just feels different to be on the receiving end (as I’ve already mentioned…).
Well, I guess I should get to the actual update part!
I’m doing great! Since my last update, I’m having no pain and have only taken pain medication twice and that was the first two nights I was home, just to help me get comfortable to sleep.
I’m healing well and requiring less help to do normal daily hygiene activities. In fact, I was able to dress myself (in something other than pajama pants and a bath robe!) completely today! Button/snap/zip front tops have been wonderful combined with a stretchy cotton tank top underneath. It was also nice to discover how much a fleece or puffy vest hides!
I spoke with my surgeon this morning and he released me from needing the compression wrap I’ve been in for the last week. So, today I’m in a step-in (not over the head) spanx type camisole to keep everything in place.
I will also see him on Friday to have my drains removed!!!!! I know they are absolutely necessary to the healing process because they keep the fluid draining from the cavity left by the mastectomy, but whoa are they a bother.
He also had the pathology results from all of the tissue he removed. Everything came back exactly as we had expected. He actually removed two lymph nodes (he previously told me only one was removed, but they’re small and sometimes hidden in other tissue), and the one he intended to remove tested positive for the same cancer cells as the tumor in my breast. This means that if we hadn’t done the surgery so quickly after stopping chemo there is a chance it would have begun to spread, then it would have required a more invasive surgery and/or more aggressive treatment.
I will continue on my daily blood thinner injections until mid-November, to ensure that I don’t develop a post-operative blood clot. I told you that my post-op care was glamorous!
I also have a follow up scheduled for next Tuesday with the oncologist. There we’ll discuss what my treatment will look like moving forward.
Another blessing? My treatment team has been amazing. All of my doctors (oncologist, surgeon, GI) have been continually working together, in addition to meeting with other local cancer specialists, to come up with the best action plan in every stage of this journey. From the beginning, Michael and I have felt very comfortable and confident, and I personally have very high standards when it comes to doctors. It has been wonderful to feel listened to, have all of my questions (and there have been tons) answered, never once have I felt inferior or as though I’m just a “patient” I’ve been a real person to each of them all along.
I had planned to update you while I was still in the hospital, but I had ZERO cell signal and the wi-fi was so slow I could never get it to connect.
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