Round Two

It’s been quite a while since I updated this blog because I thought I was cancer free but, as most of you know, that is no longer the case & I’m now in Round Two of my battle with breast cancer. My last PET scan was in 2018 & since I continued to show no signs of disease we would just do them if I was having some sort of symptom. I did have an area of concern on my pubic bone from when I was originally diagnosed in 2016 but it had shown as “no longer active” on several scans.

 

On Halloween night of 2020 my youngest daughter wanted me to ride a scooter with her to Trick or Treat the last street in our neighborhood. I went with her but did something to my hip on that scooter ride that hurt for several days – I chalked it up to me doing something I was really too old to be doing anymore. I continued to do little things that would cause pain in that hip over the next several weeks until I decided that I probably needed to have it looked at when I was hurting so bad I could barely walk due to sitting cross legged in the floor. I was limping & had no strength in that hip. I had to physically pick my leg up if I wanted to cross my legs or put my leg in  a vehicle.  I sent a message to my oncologist & he ordered an MRI. I had an MRI on Feb. 8^th & he called me about half an hour after that scan to let me know that they saw something on that hip – where my previous area of concern was - & was ordering a PET Scan. I had the PET on Wed. the 10^th & his nurse called to schedule me an appointment to come see him on Friday the 12^th. As soon as she wanted me to come in to discuss the results I knew something was not right.

 

I met with my oncologist on Feb. 12^th & he told me that not only did I have a much larger 4cm lesion on my left hip adjacent to where the previous area was, there were more. I now have an area on my right hip, my sternum, a few lymph nodes, and two on my liver. A small tumor on the bottom & a large area (6cmx6cm) on the top. The areas on my liver & left hip are the most concerning. In 2016 my cancer was Estrogen Receptor positive, meaning that the cancer was feeding off of that hormone. I had a complete hysterectomy in 2017 & I have already started a medication to try & suppress my bodies production of estrogen even more. I am also starting a bone injection to try & increase the bone density so I won’t be quite so worried about falling & breaking my hip. Right now that is a concern due to the bone breakdown the cancer is causing  – if I were to break a hip it would be especially difficult to do anything to fix it since the tumor is actually on my pubic bone. I had my planning scan for radiation yesterday (Feb. 23) &  I start radiation on Thursday to try & shrink the cancer on my hips & hopefully that will decrease the swelling & pain so walking won’t be such an issue.   

 

The primary concern at this point is my liver. It is still acting like it is supposed to. My liver enzymes are perfect & I do not drink or smoke or do anything to cause harm to my liver. I have a liver biopsy scheduled tomorrow – Feb. 24 – that will determine if the cancer is still feeding off of estrogen & we are hopeful that it is & the medicine I have already started to suppress estrogen is already working to starve the cancer. He gave me options of what we would do if it was not but I honestly can’t remember what any of them were. These medications do not work forever & typically have to be changed as they lose effectiveness but I will be in some sort of active treatment for the rest of my life. I’m also trying to learn as much as I can about what is going on inside me & how I can help myself. I am reading all the books I can get my hands on to learn about supplements I can take & changes to my diet that I can make to help myself & fight this naturally while going along with what my doctor says to do. I am trying to cut sugar out of my diet & learning what foods/ drinks/etc. have been shown to help in the fight against cancer. We hear & read about miracles every day – why can’t I be among them?

 

I have had some very rough nights since all this started two weeks ago. Lots of screaming & crying has happened.  This fight has consumed me & I have spent many hours asking God why & being very angry. I have a husband I adore, three children that are my world, a career I love, & lots of plans for the future – why is this happening?! I would be lying if I said I’m all emotionally & mentally ok. I’m still working on it & have had some down & dark moments – but there has been light. I have had so many people reach out wanting to help, offering prayers, & reminding me of how loved I am. People have reached out with resources & education that have helped others & I’m not writing anything off. Dandelion Extract is good for the liver? On it! Passion Flower is a natural way to suppress estrogen production? Ordered it! Lay off the processed foods & eat more raw/organic? Sprouts here I come! I don’t just want to not die – I want to LIVE! I have not been told I have XXXX amount of years left but I know that I intend to exceed all their timelines & expectations! I’m setting goals now & I plan to celebrate our 15^th wedding anniversary & see my son graduate high school in 2023, enjoy my 40^th birthday in 2024, & then help my baby enjoy her senior year in 2028-2029, & be there for every awesome thing in between . It’s 2021 & I’m 37 now – I’ve got years left of moments I want to be there for & I’ll fight for every one of them. 

A year ago

My diagnosis came a year ago. A year ago I was sitting in the floor of my closet so my kids wouldn't see me & making calls to my husband, parents, and close friends. A year ago I was in tears, so unsure of what the next few weeks & months would bring, and so afraid I wouldn't be here to see my kids next birthdays.

We celebrated my oldest child's 16th birthday last night. We celebrate my youngest child's 6th birthday in a week. It's been a year and I am still here with no signs of stopping.

There have been several things happen since the last time I updated. I completed my 33 rounds of radiation. I HATED radiation. I went every day, Mon-Fri. Radiation only lasted about 15 min. each time but it was exhausting having to go every day & the last week of radiation I developed some pretty significant burns. My underarm & breast were awful. I would get out of the shower & my husband would look at me & cringe because of how painful it looked & how he knew I was feeling. It was a very rough two weeks while those healed but there are no signs of anything now. I also had a total hysterectomy on May 22nd. It was robotic so not nearly as big of a deal recovery wise as my mastectomy. I haven't had any hot flashes or mood swings (that I'm aware of) but I was proactive in finding an option that would help me our there. Since my cancer was estrogen receptor positive, hormone replacement therapy isn't an option for me. I have to take several medications each day to try & keep the cancer at bay & help with side effects from radiation & the hysterectomy, but I am hopeful the hard stuff is behind me.

I'm also super excited to announce that I have been asked to be a Portrait of Hope for the American Cancer Society for 2017. We participate heavily in all the Making Strides Against Breast Cancer events in the Tulsa area. I will make a speech at the Kickoff Breakfast in Aug. so I'm preparing for that & super excited to share my story & help others going through their own battles.

The last year has been hard & crazy & long & fast & so many other things. I'm so grateful to be here with my family & that I'm being given the opportunity to help others going through their own fight with breast cancer. I'm still working & staying busy with my family & trying to find my "new normal." I will likely always be a breast cancer patient. But I am so many other things & this will just be a part of my story!

Help Is Out There

Having cancer has been an exceptional drain on my family in many ways. You don't think about the different ways a diagnosis like this can change things. There are emotional, physical, mental, and financial challenges each day. I did not have enough PTO built up when I had surgery & my income is vital to keep this family going. We were going to be without half our income for several weeks & I was determined to do whatever I needed to do to keep this family rolling & that included taking advantage of the many programs that are out there to benefit cancer patients. I'm going to include many of these in this blog post so others can utilize them as well. Many of these are specific to breast cancer, but not all. Some are local to the Tulsa, OK area and others are nationally available. All of these programs require an application & some sort of proof that you are in active treatment & you will need things signed by a doctor or nurse. Many also require copies of bills that you are requesting assistance with. I will let you know which ones we were able to take advantage of & how it worked out for us. I hope this helps makes things a little easier for you or someone you know. Also - if you know another program that I have missed let me know! Life is easier when we help each other! 

~NATIONAL PROGRAMS~

Cleaning For A Reason - This is a program that provides free house cleaning services to patients going through treatment. This program isn't available in every area, but it was very helpful while I was going through chemo. Like every program on this list, proof of treatment has to be provided by your doc. or nurse. There is a very simple application that can be found on their website. I was approved for four cleanings & I rested so much easier knowing a group of professionals kept things dusted & vacuumed for me when I wasn't able. 

The Pink Daisy Project - This program sends gift cards to various places to help ease some of the financial drain. We received gift cards to Target, a gas station, and two restaurants. Making multiple trips for treatment can get very expensive & gas cards are a huge blessing. So are restaurant gift cards when you are just too tired to get in the kitchen. 

The Pink Fund - This program gives financial grants for non-medical living expenses for breast cancer patients. The application process was long & very thorough but it did take care of a month of rent & some utilities so it was worth it. 

The American Cancer Society - The American Cancer Society gives a lot of help to cancer patients where I live. They give rides to patients who can get themselves to treatment, they provided me with a wig, they have many different events that get cancer patients together & raise money for this very worthy cause. I did a program called Look Good, Feel Better that was through the ACS & it was amazing. I learned makeup tips that helped deal with my eyebrows & lashes falling out, learned some ways to tie a scarf, and got a bag full of really nice make-up. Calling their cancer hotline is where I began. I'm going to be very involved with the American Cancer Society this year - I'll post more about that later. 

Cancer Care - This is a great resource if you are looking for financial assistance. 

~TULSA/OKLAHOMA PROGRAMS~

BCAP Fund -The Breast Cancer Assistance Program (BCAP) Fund was a great help! They give financial assistance to breast cancer patients in the Tulsa area. This is another way we kept our bills paid & they even brought over some Christmas gifts for us. It was a huge blessing!

Assistance In Healthcare - We have not utilized this program, but it is another program that provides financial assistance to cancer patients in the Tulsa area.

Tulsa Community Foundation - The Tulsa Community Foundation administers several programs that are designed to help people in active treatment with various financial grants. 

Oklahoma Project Woman - This is a program that provides free mammograms, diagnostic procedures, and surgical services for OK women with no health insurance &/or limited financial resources.

Cancer Matters - This is another page that someone put together with some various programs. I do not have experience with all of these, but anything is worth a shot! 

I know there are more programs out there, but these are just some that I had direct experience or knowledge of. I hope this can help someone & if you know of something that I missed please do not hesitate to let me know of your experience & I'll add it to my list. 

 

The Light

I think I'm beginning to see some light at the end of this tunnel. I have one more fill to do this week & I will be done with the tissue expander phase. I also have a PET scan tomorrow to see if anything else new is lighting up & how this spot on my pubic bone is looking. It's my first scan since completing chemo & surgery & I'm very anxious to see how things are looking. If all is well, I can have my port removed! We don't want to do that before a scan just in case something new pops up & I need it for any further treatment, but I'm hopeful that I'm done with it.

I'm glad to be done with the tissue expanding phase. My chest is so hard right now but I'm not flat & feel like I look pretty "normal" right now. The first few fills were pretty painless & the last two were also fine but the middle ones! I don't know that I've ever hurt like that & it wasn't in the area you would expect. It was constant pulling & pressure in my upper back - I expected my chest to hurt. Pain medicine didn't touch it. I just stayed in the recliner on a heating pad for most of the day of the fill & the day after. After that my muscles would stretch & I'd start to feel better. I was very worried about my last two fills because we did 80cc instead of my normal 60cc. I thought the pain would be worse but my last two were fine & I expect my last one this week to be almost a non event. I'm up to 760cc so I only need 40cc to get to 800. That's the biggest implant I can have so once I get to 800cc I'm done.

I go on Feb. 28th for my radiation planning appointment. I'll get set up in the machine, get the little tattoos that mark where they want to radiate, and get ready to begin the next week. I'm expecting to get started on March 9th & I have to do 33 rounds (every day Mon-Fri) so that means I'll be done around the 24th of April. Once I get through that I have a hysterectomy scheduled for the beginning of May. My diagnosis of being BRCA+ means I'm much more likely to get ovarian cancer. I also have to take Taxol (a medication to suppress my bodies production of estrogen) for 10 years & that medication increases my chances of uterine cancer. I'm strangely unaffected by this. We already knew we were done having children so I'm not upset about that. The surgery is robotic so I won't have any new major scars. The only thing that bothers me is that I won't be able to take any sort of hormone replacement to help ease the menopause that's gonna be flung on me. Poor husband & kids.

After the hysterectomy, four to six months after radiation & my skin has time to heal, I will have my (hopefully) final surgery. They will swap these tissue expanders out for a normal implant. That surgery is minor compared to everything else & should signify the end of things. I don't know that I will get it in before my year anniv. of my diagnosis but it should be too long after that. I'm expecting the end of Aug or sometime in Sept. These tissue expanders are uncomfortable & I'm already looking forward to that but I also know that if I can handle chemo & the mastectomy, I can handle anything.

Surgery & the days since

I headed to the hospital for my bilateral mastectomy on Dec. 5th. My mom was in town from Kentucky so my kids were all taken care of & my husband was able to be with me every minute of my time in the hospital. I honestly don't remember much of the day of surgery or the day after. I remember being taken back to surgery & I remember waking up & wanting Rich. I remember getting up the next day, taking off my wrap to take a shower, looking at myself in the mirror, & having a good cry. I remember getting in the car to go home. That's about it. I know people came by to see me & I'm sure I talked to them but I don't remember who they are or what I said! It was a pretty miserable two days & I'm glad I don't remember it very well. Everything that involved moving my upper body hurt.

I spent most of my first week home in my recliner. My sweet husband slept on the couch so he could be close. I would tell him to go to our bed and he would just say "you might need me" and lay down. I couldn't do anything for myself for that first week. I had four drains & I couldn't even get myself in the shower or wash easily. I'm so grateful for him and my mom. He took care of me & she handled the kids but when he had to go to work, she took right over. I have no idea how people do this without the help that I had. I'm glad I don't have much hair - I couldn't even get my arms high enough to wash it! I couldn't get myself out of the recliner! I hope I'm getting you a good idea of how helpless & useless I felt! I hurt & was like a giant baby. I compared to myself to a baby more than once when Rich was helping me tie my shoes! The drains were actually the worst part. They pulled & were so uncomfortable! Once my drains came out - I lost two at the one week mark & the other two at the two week mark - I started to improve quickly.

The month passed quickly. I still have to be propped up when I sleep & I still don't have a very good range of motion in my left arm. They removed five lymph nodes & two had cancer in them. This means radiation is a must have. The doctors also seem to be un-convinced by the bone biopsy. There seems to be nothing that the spot on my pubic bone can be aside from cancer so I will be having radiation on my pubic bone as well as my left breast & underarm. The spot on my bone is confusing to me too. It is cancer, it isn't, it is, it isn't. I've finally resigned myself to the fact that all my doctor's think it is & they are going to treat it as such.  Accepting that means I accept that I have metastic breast cancer & I may never have complete remission. But that's a post for another day after radiation and more discussion with people who know more about this than I do. Either way - I'm doing fine today and I'll be fine tomorrow.

I go every Monday to see my plastic surgeon & get 60cc of fluid in my tissue expanders. I'm at around 400-450cc right now & will probably keep going until I reach 750-800cc. After I'm done with the fills I start radiation. I have to do 33 rounds of that & then I'll get to have my second breast surgery 4-6 months after that. My incisions are looking great & I think they are going to scar nicely. I'm eager to see the end result. I go back to work next week & I'm ready to move into my new normal.

Going Viral

On the Wed. before surgery we decided to go eat after church. Rich had to work Thursday & then I was working Friday & Saturday. We knew it was going to be one of our last chances to go out before surgery so we headed to my favorite Chinese buffet. We had gotten done with our meal & were getting ready to ask our waitress for our check when she brought us this note instead.

I don't want to be misunderstood - this is not the first, or the last, that someone has shown my family a kindness. Many of those times it has been someone we don't know. But I took a picture & posted it on my Facebook page. It went nuts! The picture was shared hundreds of times but then it got picked by another Facebook page called Love What Matters. When that happened it went viral. Thousands of people read the story & saw the picture. I had reporters contacting me from all over the United States & several other countries. It was on ABC, CBS, even Ellen Nation! Our local Fox affiliate came to the house & did an interview. I think after all the bad that you see on the news people like to see a little bit of good & some kindness.

The man that wrote me the note & paid for our meal saw the new story & we have been in touch. His wife was around my age & died of a type of bone cancer. They had three children that are close in age to my own. I was expecting it to be an older man but was surprised when he was only a few years older than me & we had a very nice phone conversation. We were actually contacted by NBC Nightly News and they wanted us to meet on camera before Christmas but due to various conflicts it just didn't happen. That's ok though. I'm happy that the story touched people and made them happy & if this is my 15 minutes, that's just fine by me.

Reaching for the top of the hill

The results of my bone biopsy are in. NO MALIGNANCY! This means the biopsy they took showed no signs of cancer. While my doctor wasn't sure what exactly is showing up on my scans & said they would continue to watch it, he was pleased with the results & treatment would continue as planned with surgery & radiation to the breast & underarm area only. I'm very thankful for that & know all the prayers being sent my way had something to do with it.

Surgery. That's coming on Monday y'all. 3 days! I'm nervous & scared & excited all at once. I'm excited to have this cancer out of me! I'm scared to have the pain & drains I know that come with it. And a little nervous to see what I'm gonna look like after. I've felt like I'm nesting here at home. I've been decorating for Christmas & wrapping what gifts we've gotten & cleaning & trying to fit in all the time I can with my husband & the kids. The kids know I'm having surgery but I don't know that there is really a way to prepare them for what's to come & how useless I'm gonna be for a week or two. My mom is coming to stay for as long as I need,  so I know that between her, my husband, & kids I will be well taken care of.

This may be my last update before surgery. I had all my pre-op appointments yesterday & I'm packing my bag for the hospital today before working tonight & tomorrow night. I plan on enjoying a night at The Christmas Train with my family on Sunday night before we go in on Monday morning. Thank You again for all the support so far. I feel like I'm reaching the top of this hill with surgery & then I can start sliding down.