Things to Do Today... Survive

Life is hard right now. The side effects have become overwhelming and day-to-day functioning has become much harder than I anticipated. I returned today to get an IV infusion of fluids and more anti-nausea medicine to help combat the terrible sickness I am experiencing. I am hopeful and prayerful that this will be just another blip on the radar toward recovery, but right now it is overwhelming and all-encompassing. I'm incredibly grateful to my husband and my tribe for keeping things afloat while I cannot even manage text responses. Prayers and good vibes appreciated. ❤

My Hair Hurts...

My hair was hurting so badly, so a couple days ago I chopped it all off. I'm like a little porcupine, but at least it is feeling better. Radiation #7 done and chemo #2 done! Managing side effects with meds and doings lots of resting. #fightlikeamom — atCommunity North Cancer Center.

First Weekend Woes

There's nothing like resting by the fire for my soul. It was a tough weekend and an even rougher day, but I'm pushing on and remembering my blessings in the quiet moments like these. And is it possible that my hair actually hurts?!? Whether it's the chemo, the radiation, the surgery or the hormone replacement therapy... I am certainly experiencing a wide variety of side effects today. But I'm focused on the end goal!

Radiation Day 2

Radiation Day 2 is DONE! Baby steps! Fighting a mega huge headache since chemo ended yesterday (27 hours ago). So today they brought in the power pain meds to help. Trying to rest and let the pain meds do their thing. Reminding myself that rest is my #1 job to let the cancer fighting magic work.#fightlikeadaughter

Ready to Fight- Chemo Day 1

October 10th: Here to fight! Chemo Day #1... I'm all hooked up and a few hours in already. A few more hours and then off to my first radiation treatment. I am so blessed on this journey and know I am surrounded by love and support. #fightlikeamom @ Community North Cancer Center

Tonight I crafted a countdown chain for my remaining number of treatments. I bought this paper years ago for a Disney trip and found it in my craft room. We get to remove one link for each completed treatment! It's nice to see it in a tangible way... for the kids and me!

Preparing for the Fight

We are in the final count down… chemo and radiation begin on Wednesday. I am ready for this fight and am doing all I can to prepare my surroundings, my mind and heart for what is to come.

We have been offering information to Marilyn and Spencer as well… trying to help them understand what the next few months will look like. But it is so hard when the answers are truly unknown, and the severity of the side effects can vary from being extremely tired and sick to hospitalization.

Fighting cancer is no picnic and going through this surgery and recovery have been tough. But it has shown me over and over… daily reminders that people are good. There is so much love around us, in the people we know and those we don’t. And I am blown away by the outpouring of support we have experienced so far.

Loved beyond comprehension. And loved by those that actually know me and those that know our family or my parents or my sister or my grandparents or extended family or my in-laws. And even strangers that hear of our family and offer their prayers and support. This is the tribe of love that gives me strength every single day to put on a smile and look for the positive and know, deep in my heart that we are all in this fight together.

Cancer has taught me to be a gracious, joyous recipient. A thankful, grateful heart willing to accept help. This is a really hard role for a caregiver and one that is so often on the giving side not the receiving side. But cancer has brought this gift, and I am learning to willingly accept help.

You are asking me, asking Hunter, asking my parents- How can you help? You ask, but I have no quick answer.

I have been pondering this while I rest and recover. While I am the only one that can endure the treatments and the side-effects, I am not the only one enduring this cancer battle. My most beloveds are right with me in the trenches, and it is awful to stand by, while the one you love is hurting.

So maybe you can help take care of them while I take care of the cancer.

Doing something fun? Offer to take Marilyn & Spencer. Let them have a bit of fun out in the world while I stay safe away from crowds of people.

Headed out for a beer or dinner? Invite Hunter, give him a break from the role of chief caregiver.

Come visit me and share your sunshine.

Help our family during this time with the extra services we need:

Bring a Meal- https://takethemameal.com/VPKJ9234

House Cleaner- $85/visit

Lawn Mowing- $45/visit

Before School Care for the Kids- $100/week

Gift Cards: Send a gift card for dinner or groceries. We shop at Kroger so we can do the Clicklist- I order it online, they load it in the car and the kids help bring it all inside.

Help our family with the incredible medical bills we are experiencing as well as all of the other miscellaneous medical expenses we endure.

https://www.gofundme.com/23jgv5-support-the-smith-family

I hate asking for money, it sucks. But unfortunately, so does cancer. And cancer does not seem to understand that we already spend thousands of dollars a month just to keep Spencer alive and provide him with his Type One technology. Nor does cancer remember the thousands of dollars we spent this summer for him to experience the amazing Type One Diabetes summer camp.

I wouldn’t change a thing and I don’t plan to. Spencer recently saw an invoice for his insulin pump supplies, it was for over $500. The next day, he said all he wants for Christmas is insulin, pump supplies and sensor supplies. My amazing 7 year old wants nothing more than to live, and I know the feeling.

So, we are also accepting donations to send Spencer back to diabetes camp this summer. It changed his life and gave him the confidence he needs to help take care of himself when Hunter and I are not around.

Prior to this summer, he would not have been able to attend the before school program or get a ride home from someone else or visit a friend for a play date. He needed me or Hunter around ALL THE TIME… and now, he is comfortable understanding his medical needs and walking the adults around him through the process. The money we spent sending him to camp is going to help keep him alive and provide the tools for him to effectively manage his care.

We could have never guessed that it would be so desperately needed this year- especially on the days when I have been so sick in bed and can hardly move.

So take care of my people. That’s what I ask. My heart explodes with love for them. I fight this battle for them. I fight so I can continue in my favorite roles- my roles as mother, wife, daughter, sister, aunt, granddaughter, cousin, niece, friend, in-law, co-worker and so many more. I fight for all the people who love me, and those that love the ones I love.

Because cancer not only tries to take over my body, it tries to invade the hearts of those around me. It brings sadness and concern to those I love and frankly, I’m ready to kick cancer’s ass and get back to my most wonderful life.

I hate seeing fear in my husband’s eyes, in my parents’ faces, in my children’s tears. I hate hearing fear in my sister’s voice in our daily chats. I am ready to give them all the gift of peace… peace in knowing the cancer in gone.

But as I told Hunter, I am so ready to be done with cancer- but in order for it to end, treatments must begin. I will endure anything that cancer throws my way and ask for your love, prayers and support during this battle.

Hugs,

Sarah

Oncologist Updates- October 3

So what happens when you give the unpredictable to an excessive planner? Who knows! The next several months will show us.

On Monday, I had my radiation planning session. It involved creating a mold that will be used daily to position me in the machine, a CT scan and then marking my body with x's for the radiation process. I am referring to this radiation portion of the treatment as the "laser beam" portion. While this is not the technical term by any means, it makes it more friendly when discussing it with Marilyn & Spencer. And me, truthfully.

Knowing I will be enduring weeks of radiation sounds much more scary than "laser beams". It's all semantics at this point anyway. My Oncologist also performed follow up tests to make sure my internal incisions are healing well enough to begin treatment next week. He says, we are good to go!

Now he is formulating a plan with the Radiation Technologist and the Radiation Physicist to determine the dose strength and timing schedule. It will either be 25-28 sessions depending on how high of a dose my body can handle at a time. They have to review the scans to check bowel, kidney and bladder placement. It is all very interesting to me, and I am soaking up as much info as possible.

Then I met with the Radiation Nurse to discuss side effects and preparing for the radiation treatment. This is where it all starts to get unpredictable. Everyone reacts differently. While there are a few guaranteed side effects- extreme exhaustion, urinary issues, bowel issues- we do not know the extent of them or the other side effects that will come into play. The radiation will be aimed at my abdomen and pelvic area, so the biggest concern is long term damage to my kidneys, bowels and bladder. This will be closely monitored during treatment, but there is no indication of what will transpire in the future due to the radiation exposure.

BUT my biggest concern right now is eradicating the cancer from my body... so that is priority numero uno.

Fast forward to today and we had even more wonderfully unpredictable discussions with the Chemo Oncologists.

For my stage of cancer and with the lymph node involvement, it has been found most successful to hit the cancer with radiation and chemo at the same time. While it rocks that it will be the most effective to kill the cancer, it will suck for me. Combining the radiation and the chemo creates a combination of side effects, because I am not just enduring one type of extreme treatment- I am undergoing two, simultaneously. From what they said, all side effects will be magnified.

Today we went through chemo training class to prepare. There are technical parts, physical parts and safety parts that all factor in to this portion of the treatment. It was an abundance of information and thankfully my trusty cancer sidekicks- Mom & Hunter were both there to hear it all too. My brain is a bit overloaded at this point, so I am very glad to have all of us hearing this.

We discussed practical parts of how the treatment will go. I will have 6 weeks of chemo, on Wednesdays for about 5 hours. I will also have a radiation treatment on these days too. We start next Wednesday, October 10th and should finish November 14th. As long as my body is able to handle the doses, side effects, etc.

The chemo portion is very unpredictable as it is essentially poisoning my body to kill the cancer. The most important component is making sure that it is not damaging other parts of the body too much during this time. They said my chemo (Cisplatin) is very hard on the kidneys, so blood work will be closely monitored to make sure they are handling it ok.

There will be infusions of fluids for 2 hours before the pre-chemo drugs are infused and then 30 minutes for that and then an hour for the chemo infusion. Once again, I am fascinated by the science behind it all. I am also VERY thankful that my mother has 40 years of pharmaceutical experience and is a true asset when discussing the cocktail of medications I will receive during treatment and at home.

They discussed the side effects in-depth and the plan to combat them. Summary: it is going to suck. And it will most likely last for 4-6 weeks post treatment. Everything varies by person, so they can go over the general side effects but it also varies quite a bit person to person.

BUT my biggest concern is eradicating the cancer from my body... so I will deal with all of this and know that the pain is just a reminder that I am alive!

I am down to less than a week until all this begins, so I am making lists and doing everything possible to prepare... at home, at work, at school. And I am also trying to do as much positive thinking as I can.

One of my nurses told me, cancer will consume your life, so do anything you can to create a positive environment... have some fun, take your mind off of it and just remember to enjoy life.

So I am going to.... adding some "fun" to my to-do list right now. :)

Today was a long day. We met with our Medical Oncologist (chemo dr) and the Radiation Oncologist (radiation dr). And we have a plan!

Now that my pelvic lymph node tested positive for cancer, they are a bit more concerned about the lymph node in my armpit that showed up during the PET scan. They have ordered a 3D diagnostic mammogram for this Thursday. In addition, they have now ordered an ultrasound with biopsy as well. They want to rule out metastatic cancer before starting the chemo & radiation.

As long as these tests come back negative, we will proceed with the following plan:

Chemo and Radiation will be given concurrently. This is done so that the chemo helps to weaken the cancer cells so the radiation treatment is more effective. The radiation will be targeted specifically at my pelvic region to address any additional cancer in the pelvic lymph nodes. The chemo will then address any cancer cells that have found their way out of the pelvic region. It's a one-two punch to give me the best long term survival possibilities.

Both doctors reiterated the aggressive nature of my cancer and indicated that it was nearly unbelievable that it was caught in my annual exam. They were both amazed that I had no tell-tale symptoms, and I had not sought out a diagnosis from issues. Blind-sided is how I described this last month. But I am seeing the blessings over and over.

On October 10th, I will start chemo and possible radiation. Chemo will last about 4 hours and radiation should last 30 minutes to an hour. We will find out soon if I start radiation the 10th or 11th.

Radiation will then be 5 days a week for 25-28 days. The length of the radiation will be determined after my next CAT scan and exam on October 1st with the Radiation Oncologist. He indicated it will be the overall same amount of radiation, it will just be determining in what doses that it is administered.

Once a week, on Wednesdays, I will receive chemo and radiation. These will be intense, sucky days. The good news is that there will only be 5-6 of them. Then I ring the bell. And I cannot wait.

The chemo doc said that that the chemo will intensify the already bad side effects of the radiation and make them all worse. She said prepare to be tired like I have never been before. Nausea, vomiting, dehydration, diarrhea, lack of taste, hair thinning & some loss... many side effects and more.

Because the radiation is targeting my pelvic region, it will be wrecking havoc on my bowels, bladder and kidneys. The goal is to minimize the side effects and long term complications of these organs and the surrounding tissue.

We have chemo training on October 3rd to find out more of the nitty gritty of what to expect and how to help protect me during this time. Since the chemo kills not only the cancer, it kills the healthy cells too, I will be immuno-compromised during this time and for a bit after treatment while I recover. This will mean missing out on school, work & family events for a bit to try and keep me as safe as possible.

BUT the good news is the outcome is still promising, the doctors are still hopeful and while we are nowhere near "survivor" status yet- I am going to rock the hell out of cancer "warrior".

One doctor commented, "Sarah, at your age, with a husband, two young children, family and so much to live for, we are going to do everything we can to give you the best possible outcome."

And that is exactly what I am going to do too.

With this schedule, I will finish right at my 37th birthday, November 17th... and no matter how I feel, I am celebrating every day, every birthday and every breath.

More to come as we find out details.

Hugs,
Sarah

Progress is Progress!

​A little Sunday update. Big shout out to my parents for bringing over my standing desk from my office. Now I can type! I still cannot sit and nothing can lay on top of me, so computer work has not been an option... now I can stand, work, rest, repeat. It makes me feel much more connected to my work life, pto life and family life. 

The catheter came out on Thursday... and I peed! Woohoo! This surgery is a major deal based on the amount of organs, tissue and lymph nodes that were removed and sometimes the bladder does not take kindly to these changes. The surgical catheter was left in for a week post surgery to allow the bladder and surrounding nerves time to rest. Then they remove it and fill the bladder with solution to make sure it can work before you are allowed to leave. I mean pressure... thankfully it worked! It's definitely not working like it used to, but at least it is working. The Oncology nurses said that my young age is actually a big benefit for this component of post-surgery follow-up. 

I am managing to make it up/down the stairs 1-2 times a day, and I have even gone on 2 very short walks around our court... before the non-stop rain. They both resulted in long naps, but still... progress! 

Yesterday I even left the house for about an hour for the SON Foundation's 5th Anniversary celebration. The SON Foundation has always been important to me, but now it hits me on a very personal, critical level. I am blessed to be able to help this amazing foundation with their mission for providing accessible, affordable housing for cancer patients during treatment.

We surprised Marilyn with a very small, very quick surprise birthday party last night at our house with a few family friends. While I have been resting, it just kept becoming more and more urgent to me that we do something to celebrate our sweet girl. Her birthday is Wednesday this week, and she will be 11! So thanks to my amazing husband and some great friends and my parents, we pulled off the surprise! A quick ice cream bar with toppings galore, and I was back to resting. The kids had a great time, and my darling daughter felt surrounded by love. 

As she snuggled in next to me last night to cuddle, Marilyn said, "Mom, we have really good people around us for this fight, I can feel it." So can I! The outpouring of love and signs of support mean so very much to not only me, but our entire family. 

Our big, beautiful basset hound babies also returned home today after 11.5 days of boarding. Now our house feels like normal again. Their absence was a constant reminder to the kids that I am not well, and just as soon as I could bear it, we brought them home. They seem so happy to be here that they have wanted nothing but snuggles from the kids. It was just what our Sunday needed.

We return to the Gynecological Oncologist on Wednesday afternoon (Marilyn's Birthday) when we will complete a post-surgery exam and receive information about the pathology report, margin review of the re-sected area and discuss our treatment plan.

Waiting is not my strong suit, so the last 11 days since surgery have been LONG but I am filling them with research, time to reflect and time to prepare. Please keep us in your prayers and keep the positive vibes coming. I feel them.

Gentle Hugs,

Sarah

Surgery Update

Surgery is over. Now the healing and recovery begin. Yesterday my Oncologist performed a "radical hysterectomy with tissue removal and right side lymph node removal". He said he is very hopeful that he was able to maintain good margins, and hopefully the cancer is contained to all the areas that were removed.

We will return on Sept 12 (Marilyn's 11th birthday) for full post op appointment and pathology report findings.

My PET scan did show a lymph node in my armpit area that was a concern. The Oncologist is once again, hopeful, that this is unrelated and perhaps just a false alarm. Once I am through with healing from this surgery, we will have a mammogram to review this site.

I am blessed and overwhelmed by the outpouring of love for me, Hunter, Marilyn and Spencer. You are holding my parents, sister and in-laws in your supportive hands and caring for us all.

Thank you is not a big enough phrase.

I will not lie, the pain is extreme. I react poorly to pain medicine, and it severely nauseated me yesterday, not fun when your insides were all just whisked up and you're healing. So I'm doing my best for pain management with extra strength tylenol. 😣

Hunter is an exceptional caregiver, too good because he makes me laugh, which hurts so much right now. But he's the one I'd pick every time.

Thankfully, we have now been released from the hospital and have returned to the comfort of our own home. I made it upstairs into the recovery room we created in our bedroom, and now I am ready to rest and heal.

Please keep up the positive vibes, prayers and support. It is fueling my recovery and my fight be cancer free.

Soft, air hugs for now,
Sarah

This is a GREAT article. What do you say when a friend has cancer? How can you help? What can you do? This is the best article I have read to offer insight into the world I am currently facing. Well worth the read.

http://makingniceinthemidwest.com/2016/08/29/how-to-be-there-for-someone-with-cancer/