Tuesday, August 27, 2013

Tales from an exhausted mom & Info about Soft Tissue Sarcoma

I am not going to lie or pretend I feel all good inside b/c honestly, I feel like junk. I have been battling migraines that land me in bed for a day or two at the very least. REALLY not the best timing. 

Darnell's in his 4th week of radiation. He'll be done Sept. 24th.. so a little less than a month left. He's doing well. Very tired but all things considered, he's doing well. 

If you've read my blog before you are prob familiar with my ups and downs w/ depression. It can be such a paralyzing thing. And sometimes there is no rhyme or reason to it. One day I feel so optimistic about it all, the next ( today for example) I feel like, how the hell did my healthy 35 yr old husband end up w/ cancer? Then again, how does anyone? he's not the only one. We aren't the only family facing this. but I'll tell you what, when this crap hits home, it hits the fan.  Dealing w/ short term disability that doesn't pay you( no joke, either. 1 check from them in 2 months.. there's always a check on the way when we call...grrr) dealing w/ paper work and FMLA and just EVERYTHING. The reality of CANCER.
So to recap, yes his tumor was removed. They got it all. The radiation is basically killing anything that could come back there. All good news. I tend to be a bit cynical and think well.. it's a rare cancer and now what if it comes back. that will always be there. I realize this thought process does not line up with anything having to do with my faith. This all comes from my natural, human thinking that I just can't keep pent up. 

We have some AWESOME Friends who have fundraisers in the works~ a car wash on Sat Sept 7th.. our benefit on Sat Oct. 5th. We've been blessed in so many countless ways. 
So i don't want to be a complete downer and act like all that great stuff isn't so wonderful. It is. 
I'm just still overwhelmed with school clothes and homeschooling Isaiah  and fighting this depression... and well just living. 
I do want to blog about couponing. I am finding that to be extremely therapeutic and I am trying my hardest to build a stock pile of things we use and will need. I am getting there. So I will blog about that. I am always looking for coupons. I wish I had a hook up to the Journal times or someplace that gets rid of papers.... lol.. but seriously.. 
So I am going to ask that if you pray for our family, would you pray specifically for a few things? 
~continued strength for Darnell as he finishes radiation
~ that when the kids go back to school things will go well for them
~ that I can do my best homeschooling Isaiah. We know it's right for him. I'm just nervous.
~ that the paperwork, short term disability would work out
~ and this is a funny one, but I know God well enough to know that he is capable of anything, that I would get the hookup for MASSIVE coupons. Seriously.  
~ And that God would pour his blessings and provision on Amanda Lehman, Jim and Jodi Pritikin and all the others that are busting their butts to help us. 

So i'm done. i'm exhausted. 

A little bit about Sarcoma~

Types of Sarcoma
There are more than 50 subtypes of sarcoma, and there are two basic categories of sarcoma: soft tissue sarcoma and bone and joint sarcoma.

Soft tissue sarcomas make up less than 1% of all cancer cases. About11,000 people are diagnosed with soft tissue sarcoma in the United States each year.

Primary bone sarcomas make up less than 0.2% of all cancer cases. About 2,900 people are diagnosed with bone and joint sarcomas in the United States each year, and almost half of them are under the age of 35.

How are Sarcomas Diagnosed?

A patient may see several doctors and have a variety of medical tests before sarcoma is suspected. The diagnosis of sarcoma is usually made with a biopsy, when a doctor removes a small part of the tumor for examination. The decisions involved in the biopsy approach can be complex and are best made by a sarcoma specialist.
After the biopsy, a pathologist looks at the tumor tissue under a microscope to make a diagnosis and to determine the tumor's grade (which indicates how aggressive the tumor is). The determination of which sarcoma a patient is diagnosed with should be done by a skilled pathologist with extensive background in sarcoma pathology. Results of the biopsy and other tests are typically used to provide a disease stage (which indicates how advanced the disease is in the body). Learn more about sarcoma diagnosis.

How are Sarcomas Treated?

Starting the Journey
Thoughts for Families Dealing with Sarcoma
Dr. Meyers provides a brief and hopeful introduction to the journey with sarcoma.
Sarcoma treatments vary by tumor type, grade and stage
but nearly all sarcomas are treated with surgery when it is possible. The goal of surgery is to remove all disease from the affected area(s). Some low-grade tumors only require surgery, but many sarcomas are treated with chemotherapy and/or radiation therapy in order to prevent or get rid of disease that spreads throughout the body. These treatments may be necessary before or after surgery.
The duration and intensity of sarcoma therapy can be surprising and disheartening to patients and their families, and coping with the side effects of treatments can be a challenge. Many patients and their families choose to join support groups, which can be a great source of information and strength. Families can also seek counseling and support services at cancer centers and local charitable organizations. Learn more about sarcoma treatment.

Are Sarcomas Curable?

Cures are treatments that eradicate an illness permanently. Many sarcomas are curable, particularly (a) low grade malignancies which only require surgery and (b) the pediatric sarcomas. Still, many physicians don't use the term "cure" when talking about sarcoma. Dr. Bueckerexplains:
As opposed to most types of carcinoma, there is really no time when "cure" is felt to have been definitively achieved. Sarcoma is a lifelong diagnosis, and should be treated as such. Having said this, most recurrences or metastases will be discovered within the first two to five years after treatment. Once the patient has cleared the five-year mark, the risk of recurrence diminishes greatly, but still certainly exists.
With regards to soft tissue sarcomas, typically a course of radiation therapy (often about 5 weeks’ worth) with or without chemotherapy precedes surgical resection. While the decision to give radiation before, after or before and after surgery remains somewhat controversial (or may change on a case-by-case basis), it is certainly an integral part of the treatment plan for these tumors. Logistically, it adds a component of complexity for the patient, requiring daily treatments for about 5 weeks.
For more information, see the ESUN articles aboutdealing with the side effects of sarcoma treatment andcoping with sarcoma.
Given the length and complexity of treatment for bone and soft tissue sarcomas, it is no wonder that patients often become disillusioned and frequently depressed during the process. It is important for patients and their families to understand that this is a very normal and natural response. Commonly, centers where sarcoma patients are treated have resources and/or personnel available to help patients and their families cope with such accompanying psychological difficulties.
Once the course of treatment has been completed, a necessary schedule of follow up begins. Usually, this means visits with some type of imaging and/or other ancillary testing (cardiac testing, laboratory exams, etc.) every three months for 2-3 years, every 6 months until 5 years after treatment, then annually. Many permutations of this certainly exist, and schedules are often varied for a particular patient, predicated on many potential factors, most frequently the presence of metastasis (disease spread).
As opposed to most types of carcinoma, there is really no time when "cure" is felt to have been definitively achieved. Sarcoma is a lifelong diagnosis, and should be treated as such. Having said this, most recurrences or metastases will be discovered within the first two to five years after treatment. Once the patient has cleared the five-year mark, the risk of recurrence diminishes greatly, but still certainly exists.
With current treatment protocols, many more are surviving sarcomas than ever before, and research is ongoing. Prognoses continue to improve. With these advances and the relatively long lifespan of many of these patients, the importance of long-term follow up and recognition of distant treatment sequelae becomes even greater.

Tuesday, August 20, 2013

Just keep swimming.........

We just keep swimming. Even if we, or I don't want to. I want to stomp my feet and yell at God and tell we have had ENOUGH! I am tired of watching my kids deal with physical disabilities and psychological disabilities and now watch my husband deal w/ cancer.  Watching my kids see their dad not be "normal" is so hard. Granted his prognosis is great, according to the oncologist up to this point. But Darnell still is a cancer patient. He is in the middle or radiation. All of it takes a toll. 

I don't know how we would have made it this far w/o the support of family and friends. This benefit/fundraiser is an absolute LIFE SAVER. Seriously, there aren't enough words for us to express our gratitude. So many people willing to help and support us! I just hope enough people come b/c so many people are donating awesome things to be raffled off.. they are taking time and $$ to put these things together for our benefit. 

Darnell's handling radiation so well. He's tired and the area is starting to get irritated, but so far that's all. His short term disability department at work can kiss my a$$. We have received ONE check from them. He's been off work for 2 months. I want to call someone and rip them a new one but whoever answers the phone, it won't be their fault.. it's a whole series of events that have led up to this. 
I struggle with the part of me that is a human being with raw, real emotions and I want to be angry about cancer, I want to be angry about bladder exstrophy and all the issues Isaiah faces. Some days I am angry. My emotions get the best of me. I want to shut down. But I can't. So I need to rely on God to get me past all that. It is HARD. But if I don't push through all that, I am not going to get done what needs to get done. It's that simple. 
On the plus side, b/c of all the medical bills, we hit our out of pocket limit so anything else we go to the Dr for will covered for the rest of the year. I wish that included dental. I have had a lot of work done but need a whole lot more but I hit the amount that the dental insurance will cover. Anything else I need done, I have to pay 100%. SOOO not cool. 
It's all small stuff in the grand scheme of things. 
I seriously just want to be home, with no where to go. I don't want to deal with people or appointments...

So forgive me if I'm not upbeat, positive.. but this is how I am at this moment. And I'm fighting the tail end of horrible migraine too. 

So... I do just keep swimming. like it or not. 

Saturday, August 10, 2013

What a week!!!

Darnell finished week 1 of radiation! YAY!!!

Isaiah had his neuro/psych eval yesterday. It was a LONG appointment but he was awesome and cooperated! The Dr was able to get through all the testing they needed to do. Now we will go back for results. Dear God~ please let there be ANSWERS that will lead to help and intervention! 

This week has been amazing. seriously. There aren't and probably never will be enough or the right words to thank everyone that is supporting us and praying for us. Darnell's short term disability is so behind it's not even funny. He's received ONE check since he's been off - his last day was June 18th. Yes there's tons of paper work yada yada yada but really? when he called earlier this week they said oh we are really behind.. well isn't that what your department does?? So they said they mailed out a check, well we still haven't seen one.  
with all that has gone on this week though, I know that all that is in God's hands. As frustrating as it is... I trust God. 


I swear it's an addiction. Jeremiah has already said that when he graduates and goes to college he's going to give me a list and have me go shopping for him so that I can get everything super cheap. Then his friend asked me if I'd shop for him too. LOL. If they only knew that so many other couponers are way better at it than I am. But I'm getting there. I got Gillette Shaving cream for $.67 a can at Target.  I am building up a stock pile big enough for our family to live off of and not be constantly in need of deordant or something like that. Then I also am buying things to donate. I bought 10 packages of Tena, pads women use for bladder control issues for less than $5 well prob less than that.. And then that gave me CVS extra care bucks to use in the store. I can donate those pads to Halo, a homeless shelter here in Racine. The group I'm a part of Rockin' Mommas are donating basic needs supplies to Halo so as I've been getting things for us for super cheap, I pick up extra for Halo. With the right coupon and sale, you can get so much for very little. 

I got all of that for $8.69 befor tax & saved $104.90!!

My absolutely awesome coupon binder that I don't leave the house without!

I got $10 CVS Extra Care bucks back that day to use at CVS and paid next to nothing!

Tuesday, August 6, 2013

God DOES move mountains!!!

Where do I even begin???

a little over 24 hrs ago 2 friends decided to put together a benefit for our family. Can you believe that now a little over a day later, donations have been made, a benefit has been scheduled, friends have come out and offered to help in any way they can. I am simply in awe. Not only of what our friends and family are doing, but of what God is doing. 

I have always had faith, but i will tell you what, this last few years... it's been tested, tried and some days I wanted to give it all up. I have always just said to God " REALLY?!? when in the world did I ever seem like the person that can handle all this?"   COME ON. 
Obviously he sees things I don't. I see what I can't do, what is overwhelming and scary. He sees what HE can do with these seemingly hopeless situations and does his thing. And really, who am I to question God? 
  So no more questioning God. God is showing himself. 
Does that mean the next 7 weeks won't be trying or hard? no. It means my faith is stronger, our family's faith is stronger. 
When you are a parent and a wife and you're watching your children go through things you can do nothing about it's heart breaking. And it's not just watching Haley and Isaiah go through what they do, but Jeremiah and Savannah having to watch their bro & sis hurt and cry and not be able to make it better. Jeremiah used to carry Haley home from the bus stop b/c she would have such bad bladder spasms that she was doubled over in pain. Savannah would run ahead to tell me and then Jeremiah would be carrying Haley. Savannah has ALWAYS been with Haley through it all.. sitting with her in the bathroom when Haley has to cath and it takes forever ( Haley's words)... Haley either grabs Savannah's hand or Savannah grabs hers if Haley is in pain. 
These kids amaze me. Jeremiah goes above and beyond for Isaiah. He puts up with the hard stuff.. and i'm telling you what, it gets hard. But J will take Isaiah to the store or buy him an ice cream cone, those little things that are big things to Isaiah. 
Now with Darnell's diagnosis, surgery, and now the beginning of radiation.... it's a whole new set of circumstances. But God didn't change. The cancer diagnosis doesn't go away. But, God is providing for the things we need and showing that people care and love us and want to help. 

The last 2 months have been a whirlwind. I honestly don't think that will end but I'll tell you, it IS ok. Cancer does suck but God is bigger than it. 

And now I am going to study the couponing FB pages for the freebies :) 

You can click on the links below for info on the benefit and Donation page that has been set up by our friends!