Thursday, April 19, 2018

Coming Back to Life

We are slowly coming back to life. We are all still very sad about my father's death. But his service is finally this weekend. 

At the last minute he decided to donate his body to benefit others. However due to his age, 89, and his cause of death, cancer (love those circulating cancer cells), options were limited. He donated his body to Harvard Medical School for research. They will keep his body for up to two years, but more like 12-18 months and then return his ashes to us. 

In the meantime we are having a celebration of life type service at a local Unitarian church this weekend. The service should provide some sense of closure for all of us and help us start to put our grief behind us. 

However, in the process of putting together the service, all of our emotions are riding high and we are stressed. There are a lot of opinions and thoughts that create some conflict. But I think we will be able to pull this together and start the process of healing. 

One of the reasons I did not discuss my father's health before his death is it was not my story to tell. It was his story. I may have alluded to caring for someone and taking someone to doctor appointments but for the most part I kept it to myself.

I am trying to take care of myself as much as possible. My knee continues to heal. My exhaustion continues to thrive. And when I miss my daily nap, I tend to get cranky and go to bed early. 

Wednesday, March 28, 2018

Hibernating, or Looking My Wounds

Often when I am extremely stressed, I find I need to hibernate a bit, and 'lick my wounds' as they say. For the past month, since my father died, I have been craving time by myself, lots of time alone. (Cats optional.)

The only day I usually have nothing on my calendar is a Tuesday. I have had something on my calendar every day since. Yesterday I was supposed to have a doctor appointment but it was cancelled because the practitioner was sick (instead of the patient being sick). That meant my calendar was empty. I got to stay home.

I enjoyed my solitude and got lots of things done - like laundry. But also I focused on my weaving and knitting. I got a big dent in a project. Now I can move on to the next project so I got a sense of satisfaction.

I enjoyed my day of hibernation. I may need a few more soon.

Saturday, March 24, 2018

Coping with Other's Cancer

When you are diagnosed with cancer, you are faced with the World of Oncology. Inside that world lies the answers to your questions and how to keep you alive. As you go through diagnosis and treatment, you get to educate yourself on your illness and what's involved in getting through it.

Oncologists have to go to medical school to learn all this crap. Us patients get the express pass and learn it much faster and more intimately. Doctor's say 'may cause nausea and hair loss'. We know it means we will watch our hair fall out as we shop for a wig and try to keep something in our stomachs. We learn what the truth really is and how to translate their words. A year into treatment, we are pretty educated in 'oncology' and can help others.

My father was diagnosed with cancer in 2013, I got to be his entry into the Great Oncology Wall. He was diagnosed with Waldenstrom's lymphoma, a very indolent type, which is only treated when symptomatic. He was symptomatic so he started chemotherapy which ended up destroying his immune system.

Through all of his treatment my father used me as his source of information. Where to find good information on his disease and its treatment?  (and, no, Wikipedia is not a good source of medical information.) At every proposed test or medical misadventure, he would call me and ask me if I had had it and what was it like.

When his veins were destroyed through chemo, he had to get a port.When  he got his port, his next question was 'when do I get it out?'. The doctors wouldn't say anything. Finally, I said 'after you don't need it for six months, you can ask your doctor about getting it out'. He pondered that and was fine.

In May 2017 he was diagnosed with pancreatic cancer. He asked me to come to all his appointments so I could 'translate'. I would bring my list of questions that I thought we needed answers for. He didn't always agree with me but I still go the answers. I thought we should ask the oncologist 'what are the chances that this chemo protocol will work?' when he insisted there must be more chemo options and wanted to continue to try treatment. He didn't like negative answers to that.

He also cracked jokes all the time with the nurses and doctors. He criticized my wheelchair driving abilities but I complained he was the one who taught me to drive. He also would introduce me to his doctors as his daughter with more ailments.

Last fall he stopped asking me to go to his oncology appointments because I agreed more with the oncologist than with him about continuing treatment. But after three CT scans showing continued tumor growth (he would call it 'they are going forth and multiplying'), he finally asked me to take him to his fourth CT scan and following oncology appointment again. He was starting to feel weak and confessed that because of the number of meds he had to take as he was allergic to the CT contrast he wasn't supposed to drive himself. (He had selective hearing for medical advice he didn't like.)

Before his appointment, I had a discussion with him about what the oncologist might say about what the CT scan might find. We talked about quality of life and maybe it might be better without the dragging down of chemo might be better. Because I asked my pushy questions, and agreed with the oncologist that there really weren't more options for him, he agreed to stop chemo. It was a whirlwind and I think he was pleased.  It meant less doctor appointments which were beginning to tire him.

But it also meant that we moved on to his next stage in his cancer journey, when the hospice nurses showed up and could answer many more questions honestly than I was able. But he kept his sense of humor to the end.

For the past year I have not written about my father's cancer. It wasn't my story to tell. But now I am able to share and write through some of my stress. I will continue to write to help me cope better.

Thursday, March 22, 2018

That Drama Queen Friend

And this can apply to males as well. But we all have the drama queen friend who spends hours/days/weeks/months agonizing over their latest ailment - a bunion, or a boil, or a blister, or whatever they have.

Maybe they got new shoes that caused their feet to develop problems or they tripped and slightly skinned their knee (and ruined a pair of brand new tights). They are in agony with every step. There was so much blood. And it still hurts three days later. I am not trying to minimize real injuries or ailments but just the ones who act like they are on an episode of the "Kardashians" or "Jersey Shore" with every incident.

I know people like this. I think we all do. In comparison, those of us with chronic ailments start to wonder if we are hypochondriacs because we are constantly at the doctor's office or on the phone with them because of our latest issue.

I read this article over on RheumatoidArthritis.Net on the influence of these friends on our own thoughts about ourselves. And it made me think. I often wonder if I am getting to be such a hypochondriac because I do spend so much time at the doctors.

I do know people who are basically healthy. One woman I used to work with scheduled all her doctor appointments in one week each year to get them over with and she never went to the doctor any other time. (To be honest, I am jealous.) But I know a few drama queens who make me feel like a hypochondriac. They may go to the doctor a lot but its not for anything chronic or potentially terminal.

But I go to the doctor all the time. I think I would prefer to be a drama queen than a hypochondriac.

Sunday, March 18, 2018

Pancreatic Cancer Sucks

I haven't been blogging recently because I have been emotionally stressed. It may take me a while longer to get back to it. My father, who was diagnosed with pancreatic cancer last May, had metastases by August 1, and was in chemo until Feb 13, died on Tuesday February 27.

Since his diagnosis with Waldenstrom's lymphoma back in 2013, I had become his oncology interpreter/assistant. I went to the important appointments and answered his questions that the doctor's don't want to answer.

Due to vein damage from chemo for his lymphoma he needed a port. When he did finally get a port, his first question was 'when do I get it out?' The doctors and nurses would not answer that question. So I told him 'once you don't need it for six months or so, you can discuss taking it out.'

I also translated back to his oncologist when asked about pain levels and he replied 'just a little over here'. I would tell the oncologist that he has had several instances of extreme pain. Once he told my sister that that the pain that caused tears in his eyes was only a 5. Later he corrected himself to say it was a '10'.

Another big step in his cancer treatment was weaning him off Wikipedia for cancer research. I had to explain to him several times that Wikipedia is not a good place to do research and that the American Cancer Society was the place to start. This took several months of 'discussion'.

Aside from losing my father, the sad part is that my medical history is what enabled me to be his oncology interpreter/assistant. For the last 8 years of his life, anytime he was going to have a new procedure, test, or other medical misadventure, he would call me up and want to know if I had had it and what was it like.

Until his pancreatic cancer metastasized, he would introduce me to his doctors as "his daughter with more ailments than him." We would both make jokes through his appointments to the point that the schedulers sometimes hinted that we might be a bit crazy. Humor got us through a lot of this but now his sense of humor is gone with him.

We will miss him and we will be very sad for a while. But it was nice I could help him decipher his diagnosis and appointments as much as I could.

Sunday, March 11, 2018

Reprioritized

You may know I live outside Boston, MA. We had two 'little' snow storms in a row. The news is that we lost power from 10pm Wednesday until 7pm Saturday. Nearly 70 hours of now power makes one rethink everything.

Yes we have nearly 12 hours of daylight each day. But it seemed to get dark very early each day. The indoor temperature reached 46 degrees yesterday. On the plus side we were relatively well equipped to lose power. We have a gas stove (hot food), gas hot water heater (hot showers), and a fireplace (some warmth). We also have lots of flashlights and a few lanterns and one tiny solar phone charger. The two cats were very snuggly (and bed hogging). But nearly three full days without power is hard.

The cause of this power outage was the storm combined with the very wooded neighborhood. There were probably dozens of trees down blocking roads. There were entire telephone poles down across roads that needed to be replaced. There was a big hanging branch sitting on the wires in front of our house. Our neighbors had a tree through their roof. There were many line crews, tree crews, and electrical repair from as far away as Tennessee and Quebec.

It was stressful but it made me reprioritize everything. I was not interested in my health. I did not care about my health during that time. I was more concerned with being cold, staying warm, and hoping we did not lose the contents of both the refrigerator and freezer. (I did really miss my heating pad for my back.)

Actually, I enjoyed the part of refocusing myself. My health did not dominate my life. I allowed myself not to think about all my health crap. It was a nice break. It taught me that I need to focus on other things besides my health. Something I need to do more often.

Now that the heat is back on, the cats don't want to snuggle was much. I could get back to blogging, email, etc. Including my health.

Wednesday, March 7, 2018

Apps Aren't Helpful

I found an article in Cure Magazine (if you have cancer and aren't a subscriber, you are missing out) on this 'cool' new app for people living with cancer, called LivingWith. Its supposed to help those of us with cancer in dealing with their disease and its treatment.

'With the number of moving parts associated with a cancer diagnosis and its treatments, patients now have a “one stop shop” to help them navigate their journey.'

An app? Seriously? How can an app do that? I am skeptical to start. First, are you sick and dealing with your cancer and you need to find an app and start using it to communicate with your friends and family. Also, do they want to use an app too? And are they online all the time so they would see requests and updates. 

'The app allows patients to create a tight-knit circle of friends and families to stay connected and easily update loved ones; send requests to people asking for help with daily tasks; track mood, pain and sleep; and keep track of questions or important information for oncology team appointments.

And its all connected to a website. And what does this website do for the patient? Well it can help the caregiver.

Patients, caregivers and health care teams can download the app for free, using the Apple or Google Play stores, or by visiting the This Is Living With Cancer site – which is the main hub for the program designed to share inspirational stories and offer patients and their caregivers an online tool to help.

Oh, and they can send you selected, or their fancy word 'curated' information. This means they are mining the information they send you and then selecting what to send you. 

“They are able to self-identify their tumor type and then start getting some curated information over time,” said Basavaiah. “It is not just for the patients. It is for the whole team around them: the health team, caregivers, their support network.”'

Did you see that the app wants to connect with 'the health team'? Is your oncologist going to sign up to be on the app with you? Do they seriously think medical professionals have time to check on their patients through an app?

I even downloaded the app to try it out. The first thing it wants is for you to connect with other people. So you need to get your friends and family on it before it can help you. 

I did go to their website to see what was on it, other than pushing the app. I went to the Cancer Specific section and selected breast cancer. They only had links to breastcancer.org, American Cancer Society, and Susan B Komen. That wasn't very helpful. It is depending on other sites to provide the information and doesn't seem to 'curate' an yof it. You still need to dig through those sites for information. And it only had information on nine types of cancer.

I also went to the news portion of their site and it had articles on nutrition and coping with cancer treatment - the fun stuff like nausea, getting enough nutrition when you can't keep anything down, etc. But none of the articles I read were very detailed or provided much solid information.

So I tried it. I was on their website. And I can say I would not bother with it at all. Simply not worth the effort. I think that even if you are someone who is online all the time and just diagnosed with cancer, I am not sure it would be that helpful at all. Nothing seemed to be focused to young people with cancer - who are the most likely to be users of an app.

So my rating is one star out of a possible five. I wouldn't suggest recommending it to anyone. 

Coming Back to Life

We are slowly coming back to life. We are all still very sad about my father's death. But his service is finally this weekend.  At th...