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.