Please help me continue to fight breast cancer and have the financial security in doing so!!
Donation protected
I am raising money for the costs of my monthly oral chemotherapy medications that I will have to take for the rest of my life. In addition to those costs, I suffered right sided hemi-paresis from two brain tumors that have been removed and treated, but I am currently disabled and will need home improvements to make life easier to move about in.
The money collected will go towards medical bills, home improvement costs and transportation costs for family members to help with my care.
Supporters can also help by lending a hand around the house!! My poor husband could use an extra hand from time to time. :)
The money collected will go towards medical bills, home improvement costs and transportation costs for family members to help with my care.
Supporters can also help by lending a hand around the house!! My poor husband could use an extra hand from time to time. :)
This is my story:
I am not the type of person to pour my heart out or put my personal business out there for everyone to see on Facebook or the internet. My hope is that if I share the story of what I am currently facing in my life that it may help someone in the future to be more proactive in taking care of their health.
I was diagnosed at 33 years old with stage three inflammatory breast cancer and invasive ductal carcinoma of the right breast that is HER2 protein positive. I know that's a mouth full, but it boils down to an extremely aggressive form of cancer that unfortunately while being classified as rare really is not all that rare, rather horribly misdiagnosed at the expense of many women"˜s lives.. Women as a whole are taught to believe that you don't have to worry about developing breast cancer until later in life, after all they don't even recommend yearly mammograms until the age of 40 and over. Additionally, we are all told that having children and breastfeeding reduces your risk for cancer as well. And we all know that breast cancer lumps are never painful, right?
Well, here I was at 33, a mother of an eight year old daughter whom I breastfed for eight months just diagnosed with an aggressive form of breast cancer; it can happen to anyone at any age! More importantly I was told at a young age of 17 that I had fibrocystic breast syndrome, which again by the way they say is in no way related to breast cancer and that it does not increase your risk for breast cancer. So I have always had lumps that have spontaneously appeared and disappeared throughout my life. While this may indeed have no direct correlation with my development of breast cancer it certainly masked the early symptoms.
The lump (invasive ductal carcinoma or IDC) that became cancerous first appeared about a two years ago when I was only 32. As with all the lumps I have had in the past it came up prior to menstruation and was sore. It was nothing really out of the ordinary in the beginning. However, unlike my prior experience with fibroids this one hung around, whereas they typically dissipate within a month or two. However, because of my age and the fact that I have a child, breastfed and the lump was painful, especially prior to menstruation, cancer was absolutely the last thing I believed it to be. So I continued to brush it off. It also didn't help that at the time I had no health insurance so my hands were tied in that respect as well.
The lump increased in size and yet I still wasn't worried. I chalked it up to my caffeine intake because I know that caffeine can aggravate fibrocystic breast disorder. With school, homework, studying and keeping up with the house an energy drink a day was typically a staple for me. I didn't start to become concerned about the lump until about April 2010, when I started noticing some pretty strange changes. A second lump appeared, just as quickly as the first and right above the first lump. Again all under the same circumstances as the first and just as painful. I've never had two fibroids this painful and in the same area of the same breast before. So even though my concern had risen I was still of the mindset that this can't possibly be breast cancer, it hurts too much.
As time progressed my right breast began swelling. My initial thought was simply edema from my body's own natural defenses trying to reabsorb the fibroid, after all there were now two. Fairly quickly my nipple inverted and that's when I really got scared. I had what I referred to as my angry boob! My right breast swelled up twice the size of my left, turned bright red, was very hot to the touch, the skin became thickened and pitted like the peel of an orange and my nipple inverted. These symptoms I now know were the second form of breast cancer taking over my breast. These are the signs and symptoms of Inflammatory Breast Cancer or better known as IBC. IBC is highly aggressive and often misdiagnosed initially as mastitis because the symptoms mimic that of an infection. The problem is any delay in treatment with IBC is detrimental, by the time you have the symptoms you are already Stage 3, and for those of you who don't know, there are only 4 stages of cancer. Stage 4 is the end of the line and with IBC you start knowing that something is wrong right before the last stop on this crazy ride.
So I started exploring options to obtain some form of health care so I could get my butt into the doctor to have it checked. After MANY discussions with my boyfriend, who is the love of my life, we chose to get married so that I could get on his health plan. Marriage was honestly not something that we had really wanted for our relationship because of our own very personal beliefs on the subject and we had decided long ago that we were happy to spend the rest of our lives together without that piece of paper. So it truly was a huge decision and required a lot of careful consideration, I think more on my part than his. He had made the suggestion and it took me some time to agree. But in the end his argument won out, in order to make sure I was healthy to spend the rest of our lives together, marriage was the best way to ensure that. He was right and with every day that goes by I can't help but think he is my gift from God for the good things I have done in life.
I began a very aggressive chemotherapy regimen in September of 2010. I completed my chemotherapy in January of 2011. All of my post chemo and pre-surgical scans showed that I had a complete pathological response to the chemo meaning it did what it was intended to do, kill all the cancer cells!! So, I was given the go ahead for surgery and had a bilateral mastectomy on February 18, 2011. Even though I only had one breast affected by cancer, I wasn't taking any chances and wanted them both gone! I have 2 very important reasons in my life to fight this tooth and nail every day. My now 9 year old daughter and my husband, whom without, I wouldn't still be here to tell you my story!
Six weeks went by after surgery and then I began what I thought was going to be one of the final phases to this journey, the radiation. With IBC, since the cancer has invaded the skin there is no sure way to get it all even with surgery. Radiation is a must to help ensure the success of the treatment. I had 28 daily radiation treatments aimed at my right chest wall, lymph nodes in my arm pit and neck and a bolus that helped to push the radiation more towards the skin level as well. My final 5 treatments were "boosts" directly to the scar line itself, for a grand total of 33 daily radiation treatments, Monday through Friday with only Saturday and Sunday off. Radiation treatments have a cumulative effect, meaning you don't notice much in the beginning but by the end and even after treatment stops you continue to cook so to speak. My last treatment was on May 11, 2011. It took about a month for my skin to fully heal after my last treatment. The radiation for IBC is very harsh since so much of it is aimed at skin level. I suffered through full thickness 2nd degree burns that entailed complete skin sloughing, weeping, drying and then cracking with every twist and turn across a square foot and a half of my chest. Not a pleasant experience to say the least, lol.
Because the type of breast cancer that I have is HER2 positive I had been on a medication called Herceptin. I began this medication with the second chemotherapy drug Taxol back in October of 2010. This drug is considered a biological modifier and is supposed to train my body to attack any cells that over express this protein. Typically, Herceptin is given for one year. So I was due to be fully complete with treatment this coming October and was beginning to start considering plastic surgeons for reconstruction. Planning on returning to school this Fall to finish my final pre-req class and entrance exam to apply for the Nursing Program in the Winter. Looking for a part-time job and getting back to my life! This where I was in my life and what I had come through in the past year just to have everything turned upside down again on August 29th, 2011.
I fell Monday, August 29th, while trying to put the mixer in the cabinet above the refrigerator away. Prior to my falling on that Monday I have been having some balance issues and a few others as well, all of which I was working on appointments for to address. When I fell, I immediately lost all feeling in my right leg and arm. I did hit the back of my head, but not that hard I thought, my butt seemed to take the brunt of the impact. After giving it a few hours I decided to wait until Tuesday to go to the doc because some of the feeling had come back, it was improving, but I still could not move my right leg. Went to see my doc Tuesday who sent me directly to the ER.
Head CT showed a lesion on my brain suspicious for metastatic disease. MRI of the spine showed no lesions, but apparently I have two bulging disks in my lumbar spine. Guess that explains all that low back pain! Head MRI shows a 3.1 cm tumor in the Left Parietal Lobe with focal necrosis indicative for metastatic breast cancer. It also indicated a much smaller tumor as well located very close to the larger tumor but deeper. So had a craniotomy on September 2nd to remove the primary tumor in the left parietal lobe followed by a targeted dose of radiation directly to the area where the tumor was removed along with radio surgery/SBRT for the smaller cerebellular mass. They are going to go after #2 with radiosurgery/SBRT because of it's location and it's small size. The neurosurgeon said it would be less invasive and less damaging to the cerebellum. So I guess this now all makes me Stage IV Inflammatory Breast Cancer, words I was really hoping to not say for several more years, not one year after my diagnosis. What can you do though, but keep fighting the good fight!
I am still unsure on how much this is going to take a toll on me, but I can imagine it's going to be a rough road ahead to say the least. I spent a total of 25 days in the hospital and will continue to need rehab, for how long I don"˜t know, or how long it will be before I am able to drive again, or clean the house but I can say this I can use all the prayers and support that you all have to offer to help my family get through this. It's not going to be easy. For all of my friends who live close by, please try to give Jay a call in the next few weeks and see if there is anything you can do to help. This is going to be a lot for him and unfortunately there is little I can do to ease his burden other than to call it to the attention of all of you and ask that you offer a hand where you can.
Through all of this, my daughter, Skyelar, started back to school on the 7th, her first day of 4th grade. Jay, my husband, went back to school that same day as well to work on his BSN and started a brand new job on the 19th of the month. He really has sooo much on his plate already and it will help me to get better faster if I'm not so worried about all the added burden and stress on him. Thank you all so much already for your prayers and words of support, they really do mean so much!
To follow all of my health updates with pics and videos please follow my blog at http://rustedessence.blogspot.com/.
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Holly Newman
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