Financial Aid Resources for Breast Cancer

Today I applied for two different financial aid resources to help pay the bills. I’ve continually been amazed at what’s out there… I get overwhelmed with my treatment and when I get a burst of energy, I regroup on taking care of myself financially and look into what’s out there. It gets tricky because of my age… I’m 39 now as of January, and some funds have age limits.

There is a non-profit called Help Now Fund from The Breast Cancer Charities of America that will pay up to $500 in bills directly to the payee. The dates they accept applications are limited to about two weeks a quarter. I JUST found this one and it is due tomorrow. The application period was May 14-25, 2012. I am not sure when the next one opens up, I just got lucky to find this and went to the Cancer Resource Center at UCSF to see if I could track down a social worker I see periodically to see if she could sign the application. It was great, once I had it signed, I wrote a cover letter on the Resource Center’s computer, and faxed it out immediately. The Center is really helpful in that way. The second fund I applied for is based out of Bloomfield Hills, Michigan, and it’s called The Pink Fund, which will pay bills for up to three months.

When I first got diagnosed, I was so dazed that I couldn’t remember what my social worker helped me apply for, but when the little pieces of aid started coming in, it was so helpful. I will start to post more about this now that I’m starting to recover from everything. I get my scan at the end of the month, on May 31st… and see my doctor on June 6th to talk to him about the results. If I am clear, I get my port removed this summer. Yay.

Checking In

I’ve dropped off the face a bit… the last post I had written a week after my diagnosis, but didn’t mention my malignant situation, I think it was too much to admit even to myself and wanted to write about my phyllodes tumor lumpectomy before I forgot about the details, because the phyllodes tumor was so rare in and of itself (see previous post). My tumor was biopsied and I was told the news on the 31st of August that it was malignant with liposarcoma. Three days after my diagnosis, and after scrambling with some friends in the trade to potentially keep my business going on a volunteer-basis, I decided to close the shop because my treatment plan at the time was just too lengthy to manage. On the 3rd of September I decided to close the store and from that point on have never been so busy in my entire life. All of my doctors appointments were in the mornings and after 2-3 hours each loaded with exhausting amounts of information, I had to open the shop and chit chat with people all day long between fielding calls from UCSF about new appointments, second-opinions, testing, alternative treatments, it goes on and on. I apologize to anybody I haven’t contacted in the last month, I have been trying to keep my head above water under the circumstances.

I was finally able to meet with the sarcoma specialist at UCSF I’ve been waiting to see all month this last Monday, October 3rd, and he confirmed that none of this is make-believe, yes I happen to have saroma in my breast tissue. I have a tentative mastectomy scheduled on the 18th which will be followed by plastic surgery to insert a temporary implant. The surgery may happen early next week, I’m keeping my schedule and life open. What I’ve learned in the last five weeks is that flexibility is the name of the game with cancer, and it’s really the one in charge, I can’t swim against the course it’s leading me, only work along side it to get the best care necessary to make it go away. The senior oncologist wants to start my chemo two weeks after my mastectomy. The treatment is in-patient six days (in hospital), every month for four-six months. I’m preparing my life right now and today so it can be as simple as possible tomorrow and in the coming months. I’ve given my landlord notice after laughing deliriously about that decision Tuesday morning… laughing because moving out of my shop and last week and starting this week with the most intense doctor appointment during this current path, there is no way I could’ve considered moving again until waking up Tuesday morning. The pace of this thing is fast and I know there are things I need to do before I am put out from surgery or chemo. I plan to stay with my sister in the East Bay through my surgery and treatments.

One of my sisters is coming down from Tahoe this weekend to help me plan on what needs to be kept for the coming 8-12 months for daily living necessities, and what can be put into a storage pod. It’s been the most intense month of my life, but I know I will be fine, just need to set myself up now in order to have the maximum amount of simplicity and the least amount of stress.

That’s it for now… I will keep you posted! xoMichelle

Diagnosis

I felt compelled to write about my new diagnosis because it’s so rare and I have found there is little up-to-date information about the removal and treatment of the Phyllodes tumor. Several sites mention taking out all of the healthy tissue around it, and I know that before I saw my surgeon at UCSF, I had a few sleepless nights imagining that they would have to take out a majority of my breast. I hope this is helpful for whomever stumbles on it.  I feel fortunate to have an amazing hospital and team of doctors in my backyard, so I hope this will save some worry if you get a different story from your doctor.

On August 3, 2011 I was diagnosed with the Phyllodes tumor, a rare, fast growing tumor that is typically benign. The RN I saw at UCSF’s Women’s Health Center was convinced it was a cyst because it was large, came out of nowhere fast, and moved around quite a bit when touched. I guess a typical breast tumor is fixed and grows really slowly. She sent me over to pathology to get the fluids drained, and as it turned out, no fluid was coming out when they expressed it with a needle. The pathologist went ahead and took four fine needle biopsies. Twenty minutes after I left, the same RN called to tell me that I had a rare tumor, so rare that many clinicians haven’t seen one before, and that she had already referred me to see a surgeon at the UCSF breast center across the street.

On the 5th I had my meeting with the surgeon, she assured me the tumors are typically benign and she was so relaxed about the process which I found relieving. I hadn’t slept for the last two nights after reading things on the internet that the typical treatment is the removal of the tumor along at least a centimeter of healthy surrounding tissue. The tumor was the size of a dried apricot and if they had to take out that much tissue, I was imagining having to get fake boobs, the whole nine yards. As it turns out, and this is important for all you readers out there, if there are any… that there are DEVELOPMENTS! 🙂 There are two steps to removing a Phyllodes tumor. One is the first surgery, the removal of the tumor. This took about an hour, but it is surgery, they cut me around my nipple about an inch and slipped it out. I was put under, I was in pain that night. But it was outpatient, and I was more or less put out for a good 3-4 days, taking three Tylenol whenever I felt the pain kick in. My surgery was on a Monday and I was fully back at work Friday, with some cheating and going into the shop for bits of time Wednesday and Thursday, feeling a bit faint if I did too much. It’s now been three weeks and I still feel the healing happening.

The second step is that they wait three months for the cavity to shrink, then they go back in and remove the healthy tissue around the smaller cavity. By the time I had my surgery on August 15th, my tumor had grown to the size of a small lemon, 4.5 cm, so this is why they wait… it’s that much less tissue to remove.

Oh, lastly, regarding the biopsy, whether it’s benign or malignant, they can only tell that after they take it out. The fine needle aspiration only confirms if it’s Phyllodes or not. The surgeon I saw originally told me she had worked on a few Phyllodes tumors recently which is strange because they are so rare, and often a surgeon can go through life without working on one. I ended up switching to a second surgeon because the original ended up going on vacation and I didn’t want to wait until she got back. I just wanted the thing out. Both doctors were excellent, the surgeon who took out the tumor ultimately is the only male currently at the breast center and got a lot of praise when I was getting my mammogram.

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