Hello! I’m alive, and survived!

I’m finally looping around on my life after the trauma of being diagnosed with a malignant phyllodes tumor in my left breast. My last surgery was to get my temporary implant replaced with a permanent reconstruction on April 5, 2013. So much has happened since then, but I have to say it has taken me this long to come back around and really face what happened.

I’m having a really hard time re-entering into my life, and re-entering into my life as I knew it seems absolutely impossible. I closed my store in Russian Hill a month after my diagnosis in the fall of 2011, and now that treatment and surgeries are over, I have awoken into a very different San Francisco. It is so expensive, I have had to move to Oakland, where I don’t know anyone, and I keep getting referred for new work down in Los Angeles (I’m an interior designer), and not the Bay Area. I have been spending a lot of time by myself and have come to terms with the fact that 3 years after my diagnosis, all of my friends have had their second and third babies, and never call me back! I feel like I’ve been left behind, and find myself in the slow lane.

I met a woman last week who works at a wonderful place called Yoga Props in San Francisco… I stopped in to get an inversion sling (amazing to hang upside down… great for the immune system and depression, among other things… ), and it turns out we had the same surgeon at UCSF! I told her about my adjusting to life post cancer and how much has changed for me, and she mentioned that perhaps I could volunteer at Charlotte Maxwell Complimentary Clinic or the Women’s Cancer Resource Center, both in Oakland. The Women’s Cancer Resource Center is fabulous, I may have mentioned it in a previous post, I got a check from them at one point during my treatment while I was staying with my sister in the East Bay. Going back to my conversation with Kathleen at Yoga Props… I said something along the line that I might want to move on from the topic, that I don’t know if I want to work with cancer anymore. She reminded me that the cancer is now a part of me, that my life is forever changed. I do agree. I do also agree with men and women I know in the 80’s who survived cancer 20-45 years before and it no longer defines them. I don’t think cancer defines me, it’s just that the healing process takes a while after treatment is over. Two years later, I feel like I am dealing with PTSD. There are some life changes, like now I am very knowledgable about cancer treatment. I just got back from staying for three days with a good friend with stage iv lung cancer who is getting treated at Stanford Medical Center. I feel fortunate I have been able to help him in ways his friends who have never had cancer can… like staying on top of the symptoms from chemotherapy is KEY. This means, take your Prevacid or whatever antacids your doctor has prescribed you, and take them consistently during chemo… this will help keep the acid reflux and nausea at bay. It’s a matter of maintaining yourself well, rather than chasing the symptoms. Aloe juice is also very good for this… I took a few swigs of it daily throughout my treatment. A friend passed this tip along to me from her Chilean friend who had finished chemo the year before.

I hope this lengthy post doesn’t bore you. I have more to tell you about my overall treatment and thoughts about it after the fact, but will write about that on another day.

I hope everyone is happy, healthy and free from suffering.

Much Love,

Michelle

Advertisements

More Cancer Funding Assistance

Yesterday when I went to UCSF to see my social worker; Ellen, who is taking her place gave me an application for the Uilani Fund which is limited to breast cancer patients in Santa Cruz, San Francisco and Hawaiian residents. It covers up to $500 for alternative medicine for breast cancer patients and they pay your practitioner directly. I’ve decided to give mine to Dr. Michael Broffman at the Pine Street Clinic in San Anselmo, he is helping me with holistic, herbal and nutritional needs during my recovery. Another alternative financial resource that I found but haven’t applied for yet is Sy’s Fund which is for all cancer patients between the ages of 18-39. It’s to assist with funding any integrative treatment that helps a cancer patient recover, I know my insurance doesn’t cover any integrative, so this will be really great assistance for me. I’m assuming they pay the practitioners directly as well.

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.

Ceres Community Project

A few months back when the reality of my treatment plan was settling in, my friend Brooke started looking into ways to have meals delivered to me after surgery and eventually after my in-patient chemo. We stumbled on a few delivery services, and one in particular is a non-profit called the Ceres Community Project which was founded in Sonoma and has recently branched out with a group serving Marin County. I was only in Marin for a month, so I had two deliveries, and the food was amazing, and they would include green tea from a local company along with vegetable broth, soups, dishes and salads made from local organic ingredients. All of the food in Marin was based on Rebecca Katz’ book “One Bite at a Time”. It turned out to be serendipitous because I discovered the Ceres cookbook “Nourishing Connections” at the UCSF Mt. Zion gift shop… It’s a great cookbook with tons of informational tid bits, like reishi mushrooms should not be eaten two days before a round of chemo, etc… I highly recommend it for anyone going through cancer treatments, and for recovering afterwards. Here’s a link to the Ceres Community website.

Here Again, Some Resources

I had my mastectomy eleven days after my last post and I was so busy wrapping up my business and getting ready to move out of my apartment on top of managing my treatment plan (I had finally met with my doctor at UCSF on October 3) that I have totally neglected this blog. I started a lotsahelpinghands.com site for only close friends and family which has been my primary focus to keep my “people” updated on what is happening, I reached a point where I had to create a site because I was barely able to manage my life, and the Lotsa Helping Hands has been a necessary tool for times when I’ve been in serious need of help. I have two rounds of week-long in-patient chemo under my belt, and I am managing it well I believe. It’s hard to know when you’re talking about yourself, but one friend who drove up from southern CA to be with me when I got out on Monday was sitting in the kitchen the night before she left looking over at me saying she just couldn’t believe how strong I was, and she believes it really is because of my drive to be as healthy as possible through this. I thought it might be a good idea to start writing about my journey. I have not been journaling at all…

I had a roommate during this last round, well three actually, but the last one was in her first round of chemo and we had the same doctor. She had a tumor in her shoulder/ upper arm and actually had osteo sarcoma which was still localized. She was put into chemo much faster than me and had just been diagnosed in early December… she had no time to really realize what was happening or to process the situation. I feel like I want to pass forward some information on that I got from my incredible survivor friend from college, she has been in remission with an incurable brain tumor for 2.5 years now and not a day goes by that I don’t think about her. She has been a true inspiration to me, her strength has been a standing post for me through this entire process. I will share some of her information with you as the days go on, but here is a list of resources she gave me on September 27th.. I was in the midst of closing my shop that week… so crazy to think about how much has gone down in such a short time. I’m not really editing her list, because I think it’s good to know there are things like meetings for newly diagnosed patients… if you look up the Resource Center at UCSF, call them, you can get more updated meetings and information. Here is the content of her email… I will add more of my own resources later in this blog.

Here are a couple things:

First, there is an event for newly diagnosed patients on thursday 5:30-7:30 at the UCSF cancer center that focuses on the emotional effects of cancer and coping strategies, with a panel of survivors. I will send that in a separate email. if michelle wants to go, maybe a friend can join her???? i used to go to alot of these types of events and i usually found them helpful and useful.
website to help coordinate friends sign-up for driving to treatment, food delivery, etc…
http://www.lotsahelpinghands.com/
if michelle wants to freeze eggs or embryos (a possible side effect of chemo is deterioration in fertility), there is an organization that helps fund this for cancer patients
http://www.fertilehope.org/
financial assistance with medication copays (if michelle is eligible)
http://www.copays.org/
Integrative Medicine: some free classes (yoga, etc…) and some paid classes; also accupuncture (Beverly Burns is the person to see)
Osher Center for Intergrative Medicine at UCSF
http://www.osher.ucsf.edu/public/index.html
Free Yoga for Cancer patients
www.yogabear.org
UCSF Cancer Resource Center
I LOVE their classes, literature, resources, info, etc… Also a good place to get info on financial support, benefits/insurance issues, etc… (i have a lot more on that if you need it) Also, pre-surgery support, etc…
http://cancer.ucsf.edu/crc
cancer support group for young adults
i have found this group to be a great source of support and information — young adults includes people in their early 40s. i now there are a couple other sarcoma patients. i think the next meeting is oct 3rd (1st & 3rd mondays of the month in the evening).
there are MANY, MANY resources out there, including financial support for qualified patients. if any issues or questions arise, check with me to see if i have been down that path — doesn’t make sense to do the work twice, i’d be happy to connect you with the resources and support i found.
i am also realizing that michelle may want to look into applying for state diability or something. if she is no longer working, i think there is support out there. i am not sure how that works, but she should apply for whatever is available – some of the above resources (UCSF cancer resource center) or www.cancer.org may have informationn about that, or they can connect you with people who can answer those questions.
Have a good night!

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.

Create a free website or blog at WordPress.com.