Mom update

I am so sorry I disappeared like that. It was not intentional. Everything is just so overwhelming and I am trying to cope day to day but some things fell off the back burners behind the stove and I didn't find them until I was cleaning for Passover.

My mom is still alive, but her health is declining rapidly. I can't believe I left my last update the way I did. I thought I had written one more.

Here is the update to bring you all current. It is possible that from this information, some readers may think they know who I am, or may be sure of who I am. I guess I can't do much about that anymore. My "secret" of dealing with depression and anxiety now seems so small compared to losing a parent slowly and painfully from cancer. Just don't post anything publicly, please.

My mom saw Dr. Norton, the surgeon who specializes in pancreatic cancer, in early December. He looked at her scan and determined that the pancreatic tumor had fully encapsulated her vena cava, I think it was. He could not operate. With no surgery, the only option was chemo. But before she could start chemo, she had to be assigned to an oncologist at her primary clinic.

While all of this was going on, I met with my rabbi. He said he knew how this disease progressed, and I needed to get out there to see her one more time. And he said I needed to bring my children so they could have some happy memories of her too, and she could visit with them while she was still strong.

I was very anxious about how we were going to do that. We could not afford airfare or car rental or hotel rates. I did the only thing I could think of. I prayed. And almost out of the blue an idea came to me. I could drive. I calculated costs and it was doable. It would allow us to afford a hotel, and we wouldn't have to rent a car. But the children and I would have to go alone. My husband could not take time off work.

I pulled the children out of school and we drove across the country to spend two weeks with my mom. I am very glad we did. We had quality time with her and the children have lots of memories, both of the visit and the trip there and back. Once this idea came to me, I planned, packed, and we left within three days. I had so many things for the children to do on the drive and they used most of them. From a parenting perspective, it was very successful.

My mom had a biopsy in mid-January to determine whether the cancer had spread. The doctors biopsied tissue that was on her abdominal wall. We all hoped that was scar tissue from her hysterectomy when she had uterine cancer 2 1/2 years ago. It was not. It was metastasized cancer. The doctors determined it had spread to her liver, kidneys, and abdominal wall.

She started chemo late January and initially it did good things for her. She felt like she had more energy and was more upbeat. But it only lasted for two treatments, and after that it started wearing her out. She continued on, hoping it would do something. But her blood tests showed the cancer was spreading and multiplying and chemo wasn't stopping or even really slowing it.

Then she developed a blood clot in her leg and severe edema--swelling--in the same leg. When tested, they found one of her kidneys had failed. She was scheduled for a stent to try to jumpstart her kidney but then she had tachycardia and she had to be referred to a cardiologist to be cleared for the stent surgery.

She finally had the stent put in on February 12 and she continued with chemo. By Feb 18 she had to get a home helper in to assist with cooking and cleaning and laundry. On March 1, Mom qualified for Medicare, so now assistance that had previously not been covered was now available to her. She saw her oncologist who said that she could continue with chemo if she wanted, but it wasn't really beneficial. It was up to her. She decided to do one more round (three weeks).

On March 27, Mom turned 65. It was a bittersweet birthday for all of us. It was particularly hard for me not to be able to be there with her. Already December seems like it was long ago.

At the beginning of April, Mom went on home hospice. She has a hospital bed in her living room and a wheelchair and walker to help her get around. Her pain is generally manageable. She has little appetite and has lost half her body weight and is weak and easily tired.

April 10 marked five years since my dad died. April 12 (which was also Easter) was his yahrtzeit. April 19 marked nine years since my father-in-law died. It was a very difficult Passover, knowing that I am losing my mom and I am so far away and she is not just a phone call away, the way she was before she was sick. It is selfish I know, to want more time with her, to want her to be there for me, but I accept that it is also normal.

I used to call every other day but time after time she was too tired or crying too much or otherwise not up to talking to me. My counselor suggested I call twice a week, so that is what I'm doing now. I still only get to talk to her maybe once every two weeks. The rest of the time I leave voice mail or talk to her significant other, who has been a G-d send for all of us.

I talked to her on the 19th and she said, No matter what day I die, whether it's in weeks or months or years, I want you to remember the happy times. It's so important to remember the good times, not the date of death. She is right but it is easier said than done. It seems she knows the end is coming.

Every day I wonder if this is the day I get a phone call saying it is time to come say goodbye. I will fly out when it comes. A friend has volunteered their frequent flier miles.

I will try much harder to do better about updating. The hardest thing, actually, is that there are no words. I cannot seem to journal my way through this the way I journaled my way through my depression in 2007. The emotions are too deep, too raw. The best I can do now is report facts.

I really appreciate all of your support.

My mom: the scan, part II

My mom sent me an email this evening and said that she looked up her CT scan results on her online patient account. She said it was all highly medical terms, but from what she read, she was pretty sure it said that the cancer had metastasized to her liver and abdominal wall.

Then she said she'd wait to hear the doctor interpret the test results when she sees him on Friday. But until then, she seems to think there is now no hope. And other than say that maybe that's not what the test results said, I'm not sure what I can do for her.

I am bouncing back and forth between being okay and trying to stay positive on the one hand, and suddenly feeling sad when I see or hear about other families sharing, especially when it comes to children and grandparents.

Thanksgiving was very nice but also hard. After dinner, the friends who hosted dinner were sharing photographs with (their) family that was there. I had my camera with me and had just taken photos at my children's school, and I suddenly felt so sad that I didn't have anyone there to share them with. I planned to upload the photos when I got home so my mom could see them, but I could not help but think that this would not last.

Since she sees the doctor on Friday and we don't know what he'll say (immediate surgery to get rid of all the nasty cancer?), we are waiting until his prognosis before we try to find a way to get together.

My mom: the specialist and the scan

Mom had her more detailed scan today. She doesn't know much more than she did before. This CT scan focused entirely on her pancreas so that the specialist will be able to see exactly what is going on and what exactly he can do about it.

I am feeling much more relaxed, though, now that I know who this specialist is. His name is Dr. Jeffrey Norton, and he's the Division Chief of Surgical Oncology at Stanford Cancer Center in Palo Alto, CA (the same place Patrick Swayze is getting treatment).

In fact, I just found out tonight that Dr. Norton was reportedly the surgeon who removed the pancreatic tumor from Steve Jobs (of Apple fame) in 2004. Dr. Norton is one of the foremost experts in the field of pancreatic cancer. Fun fact along the "six degrees" line of thinking: a medical procedure invented by Dr. Norton to treat a rare pancreatic disease was featured in the TV show "House."

So I feel she is really going to be in good hands. She has an appointment to see him on Friday, December 5th.

Tonight she was tired but largely in good spirits. And I was glad to hear her say that she's kind of in information overload and intentionally taking a break from this when she needs to, and doing things that focus her attention elsewhere.

I am doing okay. Still going through periods of shock and denial and feeling like this is all surreal, like I'll call her in a few days and discover this was all a nightmare and she's fine. In the meantime, she's going to her brother's for Thanksgiving and I am going to work hard at focusing on what I do have in my life (including my mom right now).

Happy Thanksgiving.

My mom

I have not written in a long time, and for that I apologize. I have been dealing with my feelings in therapy and talking with friends who live nearby. For some reason, it has been hard to write about it, but I don't feel like I am at the mercy of my memories the way I did even a few months ago.

Besides, I met with my rabbi today and he told me to start writing again regularly. Even if it is hard and even if I do not know what to say and even if no one is listening.

Because I just found out my mom is dying.

She has pancreatic cancer and the doctor said she may have only months to live. I hope the doctor is wrong and a specialist will say something different. I am currently going back and forth between shock and denial.

She found this out this past week. The cancer part was confirmed on Friday. On Wednesday (tomorrow) she will have a very detailed CT scan to determine if the tumor is operable. The doctor said the tumor partially or completely surrounds a major blood vessel in her pancreas and is partially or completely blocking the bile ducts. Her lymph nodes are also involved, but we do not know to what extent exactly.

After she has her CT scan she will see a specialist about treatment options, although from what her current doctor says, it is more a matter of putting off the inevitable than it is actually treating.

My mom lives 2000 miles away. I have a brother who lives near her and is very close to her emotionally. I hope that I and my children (my mom's only grandchildren) will be able to see her once more. Despite all of the challenges in our relationship, my mom and I have reconciled and pretty much figured out how to have an adult friendship without inviting hurt every time we talk to each other. I cannot fathom never getting to give her another hug.

I am scared and sad and hopeful and numb. I want to be able to share this with people I know, but I am unsure if I should post things twice, once here and once somewhere less anonymous. Or if it is time to tell friends that this is my blog, this is a part of me. Some friends already know about my struggles with depression and anxiety. Some might be shocked by what I have written here. I just don't know what to do right now.

My rabbi said I need to check in with him every few days even if it is just a quick note by email. He said this is going to be a difficult journey and one I should not travel alone. In my mind I thought this is especially true as I enter my "dark time" of year.

I will talk with my mom again tomorrow (Wed) night and hear about her scan. We will hopefully also talk about a possible visit and how we can make that happen in terms of time and money.

Right now I just want to curl up somewhere warm, eat something comforting, and not think about this.

Threatening to burst

Tonight I am tense. I am barely able to breathe. I am dizzy. I feel like whatever is going on inside of me cannot be contained by the confines of my body. I feel a little like I am going crazy.

Today I had only three flashbacks. I could actually feel what I felt so many years ago. I had nightmares last night and woke disoriented and panicked. I have been paralyzed by my warring thoughts and emotions. Yes, this all happened/No, this couldn't possibly have happened. My dad did things he should not have done/Not my dad! He loved me! My feelings are normal/I'm just trying to get attention.

I think I should call my counselor tomorrow, or maybe even tonight, but I don't know what to say.

It is too much. I want to curl up into myself and escape. I want to not feel for a while. I crave release.

Breakthrough or breakdown? part 2

My counselor took notes on what I was saying and made a copy for me. She says this is what we really need to work on. It is as if the chemical part of the depression and anxiety is more or less stabilized so now the rest of what I keep locked inside can finally come out. (February 22, 2008)

I did not want to deal with this. I have done everything possible to avoid it, and the fantastic reaction I had to the buspirone helped me to keep it away for a bit longer. But even the buspirone cannot keep away what I have kept locked up all these years.

I had to go back through my early posts just to see how much--or how little--I admitted when I started this blog. It wasn't much. In my 'who am I' post, I said I had been diagnosed with PTSD and that The PTSD probably has something to do with being raised in a violent home.

That seems normal, that with all of the raging emotions I had at the time, I could not say any more. But now that medication has stabilized whatever chemical issues my brain has, some wordless intelligence seems to have decided that now is the time to drag out the rest of my issues. I can't even say it now, it is so incredibly hard. But I know that I must. Admitting it is always the first step, is it not?

But I'd rather procrastinate.

Okay, that occupied me for nearly an hour.

The truth is, I am a survivor of child abuse and incest.

My history has been documented going back to my toddler years. Child Protective Services was at my house more than once. My grandmother and a cousin both tried unsuccessfully to gain custody of me when I was about seven, to get me out of that house. There are court and medical records. But until I married and put some distance between my parents and myself, I had little memory of my childhood.

It has been hard for me as welll as for my doctors and psychiatrists and counselors to know what of my depression and anxiety is purely chemical and what is caused by the abuse. I have been reading some studies that show links between child abuse and permanent brain changes, including depression in adulthood.

Both depression and anxiety, as well as repressed memory, dissociation, insomnia, flashbacks, and nightmares (all of which I've had) go hand in hand with post traumatic stress disorder, a common result of trauma. But there is also a history of major depression in my family. My caregivers say it would not be unusual to have both.

Lately I have been having flashbacks and nightmares again, as well as spikes in my anxiety level that aren't controlled by the buspirone. I have been spacey and detached from my body (dissociating). I had to go to an event in public Friday afternoon and I watched myself interact with others, hearing words coming out of my mouth, but I felt I had no control over what I was saying. That was okay. The words coming out of my mouth were far more confident and coherent than anything I could have otherwise thought of.

So I do not know if this is a breakthrough. It feels like a breakdown. Perhaps it is both.

Perfect storm

I see no point in getting out of bed today. I feel depressed, apathetic, and I ache all over. My husband says this is a perfect storm situation.