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Monday, June 9, 2014

If you come to this site I just want to thank you for coming and let you know that I have changed to a new name: so you can continue reading about me and my struggles and triumphs with advance stage breast cancer. Hope to see you soon!

Saturday, June 7, 2014

Well, it looks like I got a new project in hand. I need to gather the names, addresses and telephones of all medical providers and health care facilities that have seen me in the past five years starting in my initial breast cancer diagnosis in 2009. At that time I was living in Houston, TX and did not keep good track of my records so now I have to back track. If anyone has any ideas on how to tackle this project I would really appreciate any input. Till next post.

Wednesday, June 4, 2014

Well, feeling better. Decided against move to Houston, instead we are going to pay for private insurance and that way I can stay close to daughter and grandson. Been reading the posts on the forums at and they are soo informative and it feels so good to read on other bc stage iv sisters who are getting to live full lives inspite of cancer and for long periods of time. Also, I realize I don't have it so bad because I don't have as many side effects or as severe as some of them. My bones hurt but it's tolerable and expected. I take some advil once in a while bit that's about it. The chills and the sweats have subsided so I'm feeling pretty good right now. Till next post.

Thursday, May 22, 2014

I was finally able to get the meds for bipolar disorder which helped with the sweats and chills. I still don't have insurance and tomorrow I have my appointment at the cancer clinic for the IV injection for bone strength. Last time I went they asked for a $2 co-pay which I didn't have at the time. I don't know who they are billing now that I don't have insurance and I am afraid to ask because maybe they haven't realized the insurance is expired.

Last week I was so desperate that I called a friend in Texas and asked if I can come stay with him. That is because in Houston they have a program for uninsured patients. That program paid for my treatment when I was in stage 2. Over there they also have a mental health care agency that covered my treatments for bipolar for almost free.

When I first mentioned to my daughter that I wanted to move back to Texas she seemed disappointed because she thought I no longer want to be close to her and her baby, but nothing could be further from the truth. However, I do feel that she is getting tired to taking care of me, she gets annoyed about things that to me seem small, like I forgot to put the milk back in the refrigerator this morning, but I understand the stress of taking care of the house, the baby, her school work and me it's getting to be too much. So I might be moving to Houston in a few weeks.

Again, if anybody is reading, please leave a comment or suggestion. Thank you.

Sunday, May 11, 2014

Things went well for a while. My last scans in February of this year show that the cancer cells have stopped growing for now. My doctor says that she will order new scans every 6 months unless the markers show activity.

Right now what's going on is that I no longer have medical insurance. I won't qualify for Medicare until I've been disabled for two years. State Medicaid denied me insurance and I don't qualify for the tax credit under the new health care law (Obamacare). So I been getting my cancer med from the doctor and I don't have any pain med right now and I'm in a lot of pain. In the hip and in the leg.

I need to have insurance so next month when I get my disability check I'm going to buy private insurance which is going to cost me about $400 USD. My disability check is for $850 USD so that means my daughter, grandson and I would have to live on the $450 left.

I feel irritable all the time, I'm not sleeping well because of the pain. I feel tired all the time. I feel hopeless and desperate. I need to know someone understands what I'm going through. (Today us Sunday May 11th, Happy Mother's Day to me! I'm so grateful to spend it with my daughter) Tomorrow I am going to call my oncologist to see if they have some pain med they can provide.

If anyone reads this please post a comment.

Wednesday, May 7, 2014

The hand doctor started a series of interventions designed to try to save the hand as much as possible but said he could not guarantee results. First came a series of hyperbaric chamber treatments. These treatments were outside the hospital and I was transported by ambulance every other day. The treatments were pain free but all that moving in and out of the hospital was stressful, specially because the transport personnel were not as efficient as desired, (once they almost dropped me from the gurney when bringing me down from the ambulance). The days I wasn't been moved for the hand treatment I was moved for the radiation for the cancer. The hospital was not equipped to handle these extra treatments.

Note.- When I was first taken to the hospital my daughter requested to be taken to another hospital closer to our home but the ambulance drivers said the orthopedics in this other one were better. (not knowing the cancer had caused the fracture). I often wonder if I had been taken to the one we wanted (more modern) maybe I would not have suffered my hand injury. Similarly, I've often wondered if I had stayed in Houston, TX where I received excellent health care maybe none of these would have happened, who knows, besides I have to remember "what ifs" are useless to me.

Back to last years events. In addition to the hyperbaric chamber treatments the hand doctor operated on the hand 4 or 5 times. First he cleaned the wound and he told us that my index finger and ring finger would have to be amputated. (In the end only the tips of these fingers were amputated). After some healing time he then did some skin graft. He took a square of about 6x4 inches from my left thigh and covered the wound on the hand with it. The technique he used is so unique that the surgeon did the wound care himself as he didn't trust the hospital nurses to do it.

In the end I stayed in the hospital for 3 and a half months due to the hand injury. On advise of my attorney I did not started any legal recourse until after I was released from the hospital. I left the hospital on November 4th. It felt scary to leave the controlled environment of the hospital. At first, a nurse and two physical therapists came to my house once a week but the treatment I received at home felt sluggish. I had started to walk with the help of a walker while in the hospital and the therapy there was daily and focused. At home without the necessary equipment progress was slow.

So my daughter decided she would start taking me to outpatient therapy and in December I started going to physical therapy twice week;y. Fortunately I was able to get into the local handicap transportation buses that take you door to door to doctors appointments so my daughter did not have to do all that driving. I started regaining my strength and at least at the clinic was able to walk, climb steps and push myself hard. At home was and is another story. I am not motivated to do the home exercises they gave me. After reading in so many other breast cancer stage IV blogs I realize that fatigue is a common symptom, I feel tired all the time and can't sleep at night because of the hot flashes and nightly sweats. As I've read in other patients' cases relatives often take this as laziness on the part of the patient and my daughter is no exception to this.

Sunday, May 4, 2014

The journey begins ...July 2013

The next day after my fall I went into surgery, I was alone at the hospital because my daughter was taking her mid-term exams in law school. But I wasn't scared. I had had several surgeries in my life including my mastectomy and felt confident I would come out ok from this one also.

Because of the lymphedema on my right arm ( due to the mastectomy and lymph nodes removal in 2010) I had a bracelet on my right wrist warning of vascular risk. Meaning no poking on that arm. The surgery went on for about six hours (they had said it would last 2).

When I woke up my right arm was bandaged up to the elbow and I was told an IV infiltration had occurred. When I (or my daughter) asked why they had placed an IV on my right arm when it had a vascular risk bracelet on it we were told I was loosing a lot of blood during surgery and they couldn't get an IV going fast enough somewhere else, but the fact is that when they were telling us this, when I came out of surgery besides the infiltration I also had a central access line in my chest.

I was also informed (actually most of this was told to me by my daughter a few days after surgery since I was too loopy from medications the first days) I was informed that when they opened the leg and looked at the bone the surgeon realized there was cancer in the bone. The real reason the femur had broken wasn't so much the fall but the fact that the bone was weak from the cancer.

I was referred to an inpatient oncologist my doctor Stefani Capone. There were pet scans and ct scans and the results came that the original breast cancer had spread to several bones in my body and I was now a Stage IV patient.

(Note.- to be perfectly honest it really hadn't sink in what Stage IV
metastasized breast cancer meant until I started blogging and reading other fighters' blogs).
I spent three and a half months in the hospital. My daughter came to see me as much as she could but with school and a 2 year old she had (and has ) her plate full. Between the injured hand, the diagnoses of Stage IV and the recovery from the surgery, the months went by slowly. Aurora you're not in Texas anymore. None of the support group I had in 2010.
As many of you fellow fighters know, Cancer can bring depression but additionally in 2009 I had been diagnosed with Bipolar Depressive-Manic Disorder. While in the hospital I continued taking the medicine for Bipolar in addition I was started on Arimidex. I was placed on levothyroxine and I was given insulin shots. The pain was controlled with morphine.
Then came the day when the hand surgeon announced an amputation was imminent. I balked. I said there had to be something else they could do. I had come with a perfectly healthy hand to the surgery and now they were saying amputation???