Monday, February 20, 2017

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.

Tuesday, January 10, 2017

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.

Friday, December 2, 2016

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.

Wednesday, November 23, 2016

Bone biopsy

I hope everyone is excited about Thanksgiving & ready to eat, eat, EAT! We aren't going to be able to go "home" for Thanksgiving. I have to work Wed & Thurs night since neither of us really had to the time to take off work with surgery coming up in less than two weeks. We didn't want to just be left out of the day though so we decided to have FRIENDSGIVING with another couple from church. We are going to get together with them on Friday night & have a huge, super traditional, Thanksgiving meal. I'm really looking forward to having our house full of love & laughter and just forgetting about all this for the night. I'm making the dressing, green bean casserole, crescent rolls, chocolate pie, and pumpkin pie! I'm also taking another dressing to work on Thursday night so I'm going to do some cleaning & food prep after I get done writing this!

I had my bone biopsy yesterday so a final decision regarding the stage of my cancer and whether it is in the bone or not can be made. It was a pretty painless procedure. They took me to a CT room (it was a CT guided biopsy) and gave me some drugs to put me in a "twilight state". There was an octopus, fish, and sea grass painted on the tiles above my head & I remember laughing because the grass and legs of the octopus began to move! After that I don't actually remember much of the day. I DO, however, think I remember waking up at some point to tell them something was hurting & seeing the doctor drilling into my hip with what I believe was a yellow Dewalt drill. I told him it hurt & then went back to sleep. I then remember waking up & my husband being there asking me to try & eat and drink. I remember drinking apple juice & eating peaches that he was feeding me. Then I remember being home & in my recliner. I know more happened during the day but I don't really remember it. It's so weird to lose a day! I know I was there & I know I said & did things but I'm not really sure what they were & if I should be embarrassed or not! I was told I would know results in 3-5 days so I'm expecting it to be next week due to the holiday & weekend.

Hope you and yours have a Happy Thanksgiving! I can say that one positive thing about having cancer through the holidays is that I am so much more aware of how blessed I still am and how grateful I am for these moments. Sometimes these days just fly by but I'm determined to make the most of every, single, second. I hate that cancer has taken so much time from me and from us, but I won't let it steal my joy! We will get every bit of fun we can out of this and create memories that I hope last the rest of our lives! So eat that turkey, put some whipped cream on that pie, and enjoy your family and friends! You don't know how much time you have to do so!

Tuesday, November 15, 2016

How You Spend Your Dash

Things never go the way we think. I think I'm nearing the end of this journey & I get news that possibly tells me otherwise. I met with my radiologic oncologist (the guy who does my radiation) and he was very concerned about a spot that had shown up on my pubic bone. We knew something had been seen in a PET scan, but I had a bone scan that showed no activity so we thought that meant I was in the clear. The oncologist believes this spot is cancer and layered all the scans on top of each other to show me how it was always there in each scan I've had. I asked why the bone scan came back as "clear" and he showed me - quite clearly there is no bone there. It appears that the cancer has already eaten a hole in the bone. I've been scheduled for a bone biopsy on Nov. 22nd (ouch...thankfully I'll be asleep) and will know more after that biopsy but the oncologist & my surgeon feel pretty strongly that it is cancer. 

What does all that mean? If cancer has spread to my bone that means I have metastatic breast cancer - stage 4. This is just a fancy word that means some of my original cancer in the breast broke off & settled in a new area. We already know that I have several lymph nodes involved & that is how the cancer moves in the body - mine just seems to have moved to the bone. A bone metastases is very common and the hip & pubic area are a common spot. The scariest part of this is that once cancer has spread to the bones or to other parts of the body it's rarely able to be cured. I may never have remission & treatment will begin to focus on length & quality of life. While they can't make the cancer go away, it can be treated to shrink, stop, or slow it's growth. The damage that has been done to the bone has been done. If the biopsy comes back positive I will receive radiation to my hip area at the same time they are radiating the breast/underarm, but I'm not really sure what my other treatment options are. The oncologist mentioned more chemo but also said that chemo doesn't work well on a bone cancer since there is such little blood flow to the bone & I just had chemo - he doesn't think more will help. So beyond radiation I really don't know.

We are still a go for surgery on Dec. 5th. I can still feel the original tumor in my breast & I've stopped chemo. If they don't remove my breast that tumor will just begin to grow & spread again. I'm too young not to treat this as aggressively as possible. This may be what does me in but it won't be today. I will fight, I will continue living my life, I will continue laughing, I will continue loving. I will not lay down & die or be angry with God. I have moments where I'm just terrified or I cry, but those moments aren't as frequent as you might think. I have things I want to do next year. Right now I'm mostly planning Christmas in our immediate future, helping with the American Cancer Society next year, and a little more in the distance is a trip for our 10th anniversary & our next family trip to Disney World. That Disney trip was going to be my "celebration" trip when I was free of cancer and, no matter what this biopsy says, I still plan to take it. The one thing I can say that this cancer has done is make me more aware of  what I can do to help others & doing all I can to create  awesome memories with my husband & my kids. I want them to have amazing memories with me in them no matter if I have 5 or 50 more years with them. I will make my dash worth something!



I read of a man who stood to speak
At the funeral of a friend

He referred to the dates on her tombstone
From the beginning to the end. 

He noted that first came her date of her birth
And spoke the following date with tears

But he said what mattered most of all
Was the dash between those years. 

For that dash represents all the time
That she spent alive on earth

And now only those who loved her
Know what that dash is worth.

For it matters not how much we own;
The cars, the house, the cash

What matters is how we live and love
And how we spend our dash. 

So think about this long and hard 
Are there things you'd like to change? 

For you never know how much time is left
That can still be rearranged.

If we could just slow down enough
To consider what's true and real

And always try to understand 
The way other people feel. 

And be less quick to anger,
And show appreciation more

And love the people in our lives
Like we've never loved before. 

If we treat each other with respect,
And more often wear a smile

Remembering that this special dash
Might only last a little while. 

So, when your eulogy is being read
With your life's actions to rehash

Would you be proud of the things they say
About how you spent your dash?