Leanna's Winding Path

22 May 2012 – Up Till Now…

Typed by Jana H.

As of lunchtime today, three and a half days without pain.

Let’s start with Friday – we had an awesome cleaning visit on Friday.  The crew from the west coast arranged this and it has been and will be a tremendous help to Herb and I. 

Saturday,  I got a call from the doctor I consult with at John’s Hopkins.   He suggested I go ahead and get on hospice and that if required I quit Herceptin and any other treatment that would prevent me from being on hospice.  Receiving this news was upsetting but not surprising. 

Saturday night we had some awesome dinner sent by Meghan and Josh – thanks guys!  We didn’t have to cook and it was delicious. 

On Sunday, my friend April from VA came up.  We worked on some art projects while Herb went on a nice long bike ride that crushed him. 

Today, we’re going to see Dr. Bush from Palliative Health Care and the head of the Frederick hospice department.  We’re going to consult with him about what the doctor from John’s Hopkins said.  Thursday we meet with Dr. Hendricks  to consult about the same thing. 

On another note, Herb has starting reading to me.  Right now we’re working our way through Tuesdays with Morrie.   I love this book! 

Herb has a 24 race this weekend, so I probably won’t be blogging. 

If you’re interested in helping me with my blog, being my scribe so to speak, please let me know. 

8 May 2012 - An Awesome Gift

Typed by Helene S.

I got the coolest gift on Saturday.

It was a photo album from some of my dearest friends.  It had awesome pictures of my life since Santa Barbara.  Here is who contributed:

• Adina Abeles
• Andrea and Chad Berkley
• Bill Kuhn
• Charles Montour
• Diana Juliano
• Elizabeth Irvin
• Helene Scalliet
• Jana Hartline
• Julie Granbery
• Lacrissa Cook
• Mike Lesondak
• Kris and Nate Wall
• Sarah Sikich

These photos are amazing.  I am so lucky.  I want to thank everyone who participated.  Thank you.

With Love,

Leanna

21 April, 2012 – A Gamble

[Typed by April]

Last week I went to see an oncologist in Frederick with the hopes of getting treatment locally. The idea was supported by Dr. Hendricks, my primary oncologist. They saw that the tumors were growing and are aware that I’ve been experiencing more pain and wanted to do something to help me.

So I have options:

Same As

This option is to continue as we have been with Herceptin & other medications. The risk of this is that the medicine does not get past the blood brain barrier and I’ve been feeling worse currently than at any other point during my diagnosis.

The New Approach

Dr. Oh thinks I may have cancer in the meninges of my brain & suggests having a port surgically put in my brain since Herceptin does not get past blood brain barrier and the port would allow to medicine to get to the area of infection. Dr. Moskowitz, my neurosurgeon thinks there is a 90% chance it could be HER 2 + cancer in the meninges but is not positive that such treatment will be beneficial or extend my life. Dr. Hendricks suggested that I get another opinion, maybe a more aggressive doctor from Johns Hopkins since this is a procedure she is not very familiar with. Dr. Oh has actually had a patient live for 11 years using this approach. Dr. Moskowitz feels that I am too compromised or weak for this approach.  Of course, I don’t think that I am too weak. The doctors who know me best feel that this seems to be the last option that we have. The risk with this option is bleeding in the brain, that it won’t work at all, or infection and potentially others.

Hospice

Dr. Hendricks and Dr. Moskowitz have both suggested hospice and hospice doesn’t mean death. If I go onto hospice, I would have to give up on any medical preventative care such as Herceptin. I’m afraid to give up on Herceptin because up to this point, we believe it’s kept HER 2+ breast cancer out of the rest of my body. I’m afraid that stopping that treatment might open my body up to this aggressive form of cancer. Hospice provides pain management and comfort care. There is a misunderstanding about exactly what qualifies a person for hospice, but my doctors are confident that if I’m ready they can help me in getting that care.

Hospice can come help and when it’s time I want to make sure that we’re able to use hospice as much as we can. Whenever it is time I do not want to leave this world from hospital. The risk with the hospice option is that I’m not ready and that it opens my body up to HER2 + breast cancer.

So there is the gamble. Herb and I have been presented with these options and need to make a decision. I’ll get the opinion from Johns Hopkins soon and I’m still going to live in this life for as long as I can.

With either of these approaches I’m likely to try a group called Mideri which is out of Ashland, Oregon, and can even be approved for me to work with if I go into Hospice. They offer complementary alternative medicine, which is something my gut has always felt better about anyway. And I’ll continue working with my acupuncturist and do whatever other complementary medicine that is available to me. 

11 April 2012 – Please Help

When I was first diagnosed, lots of people offered their help.  At the time, I was still new to this diagnosis and it was not that hard to deal with; I was strong. So while I certainly took many of your offers of help, I didn’t need as much help as was being offered at the time. and didn’t know what to suggest either.

Now, it’s different. Almost 4 years after my diagnosis! I’m having some serious issues that I’m trying to deal with in various ways. But there are several “to do”
 items that are very difficult for me to do, so here I am actually asking for help and feeling like I actually know  what to  ask for.

There are basically three categories that I could use your help.

1.     I need more social interaction (crafty things, a drive, a visit, shopping. or  going to a restaurant. I’m really up for anything).  For those of you that live close, Herb tried starting a calendar for me at the beginning of the year.  We think many have forgotten about it while I was on vacation (certainly understandable).  For those of you that live far away, a post on my blog or an email makes me very happy.

2.     Cleaning and laundry – I know that’s sort of mundane, but it could really help Herb and me since he is now spending a lot more time taking care of household stuff than before I was disabled.

3.     Cooking  –   I still very much like cooking.   In our cooking adventures. I was hoping to cook meals that can be frozen  or  eaten as  leftovers or contribute to a knock-out dinner party.

I know that it may be difficult to find yourself over here. Some of us have the whole country separating us. But for Herb and I to make it, we can use as much help as possible. He is angry about the new direction this cancer diagnosis has taken us. He told me that if he did not love me with all his heart, he would be gone. I think this disease has affected him­­­ more seriously than it has me. He tries so hard. He really is amazing, just overwhelmed.

Thank you for anything you can do.

4 April 2012 – I Quit

It’s true. I quit. Not altogether, but in a way I’ve never quit before. I guess that I am redefining who I am.

Ihave always been known for my strength and perseverance.  Last night I decided to end my nutrition program at Tai Sophia.

 School has always been important to me. Nutrition is also very important to me. But after the first trimester, I realized that this program is not going to be what makes me well. It would keep me inside researching and studying instead of where it would want to be living life.

I always thought school was the way the main way that I could overcome anything. I now realize that it isn’t. It seems that they ( the nutrition program) are training for practitioners or researchers. I was attending for personal reasons.  The stress that I feel regarding just the first trimester is more then one needs when they are focusing on healing.

Remember my new credo: Live while I’m alive.

So wish me luck. Hopefully, I do not regret this decision.

28 March 2012–You know What We Know

Thanks to everybody for the nice birthday wishes yesterday. Maybe not a big success, but I would like to report I made it safely through my 33rd birthday.

Unfortunately, I had a doctors appointment with Dr. Gagnon. We were following up on some recent scans.

The first thing he said to me is, “You’ve gained weight.”  He doesn’t know how much I’ve struggled with this concept. He probably thought that he was starting with the easiest thing to talk about.

There is evidence that tumors are growing in my brain (slowly). Options: more cyberknife (could help, could be very dangerous), brain surgery (the lesions are deep, surgery could be very risky), more chemo, let it ride, some combination of treatment options.

Not great news to get on your birthday.

I think I have to trust my intuition here.

I’m not afraid of the chemo option. The other medical options scare me. It’s possible that they could greatly reduce my quality of life without greatly enhancing my length of life.

So Herb and I are once again in the business of wrestling with difficult decisions about how to proceed.

I’ve decided that it’s best to follow my intuition. My intuition says that chemo may be okay. Herb read the side effects, and they did not seem that bad. My intuition also says that I should continue to investigate the practices of wellness that will help me keep going.

Just so you know, right now those practices include:

·      acupuncture

·      Chinese herbalism

·      Reiki

·      meditation

·      plenty of sleep

·      investment in myself and my interests (school)

·      social interaction

·      eating well

·      exercise

·      having things to look forward to

This seems like the best approach to me. Live while I’m alive. None of the things on my intuitive list are very scary–except for some of the school of assignments hehe.

This summer, I had reason to doubt my intuition. I was wrong about something in a significant way. For a while, it has affected how much I thought I could trust myself. The last night, my friend Jay said, “but how many times has that happened?” He helped me trust myself again. Thank you, Jay.

22 March 2012–Plans

I’ve recently been inspired.. I can’t say by what exactly, but nonetheless, I have some new ideas about how I might achieve wellness and better health.

I have been convinced (as we all should be) that exercise is very important to one’s well-being. However, I have trouble motivating myself to exercise without a partner or some goal in mind.

Even walking can be an excellent exercise.

So this year, I hope to participate in the Susan G. Komen 5k race for the cure in Hunts Valley, Maryland. I ran in this race more than three years ago. This time, I plan to walk it with my crutches.

At first thought, Herb and I both have concerns about this adventure. Safety and fatigue being the largest concerns.  But my thought is to get as many of my friends to walk this race with.  Not only will this keep me motivated to train, it will also allow my friends to protect me and my crutches from other racers. It would also be a really fun and rallying thing for me to participate in.

I know that 5k is not a great distance. But just practicing to get myself able to walk that distance will make me stronger and hopefully better balanced. Be warned. The walk will be at a very leisurely pace. We will probably be the last group to finish.

So, if you are interested in walking with me please e-mail me and let me know. The walk is September (oops! i meant October)  21, 2012. I’m lucky to have a lot of good friends. So, if you come, you’re likely to meet a wonderful person.

Thanks for considering it.

http://apps.komen.org/raceforthecure/

Registration begins April 23^rd.

22 March 2012–happy spring

I recently returned from an awesome vacation on the West Coast. We decided that I should not go to France while Herb was working. The village he was staying in was not very handicapped accessible. So while he was gone working, I took a trip to the West Coast. And I had a very busy and exciting time.

The basic structure included me flying out to LAX and staying with Jana in Redondo Beach for almost a week. Then I flew from LAX to Portland, Oregon and road back down the West Coast with Chad, Andrea, and Ellie. We stopped in Santa Barbara for a few days. Herb was able to join us for part of our time in Santa Barbara. Then they took me the rest of the way to Jana’ s After about three weeks of me being on the West Coast, I came home. Now I’m back home with Herb.

I was so lucky while on the West Coast. So many people made it a point to come and see me or vice versa. I saw about 32 friends. I didn’t even realize I still new that many people out there.  I met three new friends. I had a fantastic time. The hardest part was being content to let people do things for me and to basically take care of me. That is not the fault of anyone I visited.  It is the fault of my own pride–this is something I need to work on.

Thanks to everyone who helped make my trip so special.

Love,

Leanna

PS I faced an interesting challenge while traveling. My nutrition class required that I go on a 4–day modern diet and track my intake. So I went vegan for four days. I don’t care for the vegan diet, and it’s was particularly difficult to stick to while traveling. I ate a whole lot of potatoes.

3 March 2012 – Fun in Redondo

So I’ve been in Redondo Beach for about four days now. I’ve been having a great time. My very good friend Jana, has taken me shopping. A task I usually dread, but she is very good at.

Tonight, she is going to try to help me make a chipotle goat cheese cheesecake. Probably my favorite dessert ever.

Tomorrow, I get to see my great aunt Lola and second cousin Rebecca. I’ll also get to see Julie and Jeff and Megan and Josh and their kids. It’s been a fun but busy time out here on the West Coast.

So for my nutrition program, are some men is to do a special diet for four days. I chose vegan for some crazy reason. I’m trying to decide when to start it because I will have to have it finished in a paper written about it before I get home. Good sushi, dairy (cheeses), and wisely sourced meats are products that I usually incorporate into my diet. I chose the vegan diet because I thought I would be really challenging. It already is–just trying to figure out what days I’m going to do along them out here.

So much good food here. He he he. Wish me luck.