Tuesday, December 15, 2015

So, about this rollercoaster I'm on, I'd like a break now and then please...

Logging for a few days.
So. PET scan was fine on Thursday.
Work was fine most on Friday.
I was up most of the night Friday/Saturday.
I swallowed one pill and began coughing/vomiting and couldn't stop all day. Drank tea. Took allergy medicine... meh.
After going thru that, I wasn't thrilled with Saturday. Received a new anti-nausea med I take every 6 hours now. Sunday morning at 1:30 am I started coughing up blood along with mucus. Very disconcerting. This hasn't really ended yet... yuck.
Went to the dr.
Got two bags of fluid.
They didn't know what to do with me.
I had terrible sleep. Couldn't stop panic breathing where everytime I laid down I'd go into this breathing issue. Still an issue during the daytime.
Called to beg to see my oncologist Monday since I had a sub but she's been on holiday so she actually couldn't squeeze me in since she wants quality conversation time about the PET scan. So tomorrow I go.


PET SCAN results... 30 minute wait while my oncologist reviewed results, could have been good or bad, or both. Yep, both. Received "Mixed Results".

The one good: the tumor on my adrenal gland that was discovered in July shrunk a load, she was happy.

The other things, not so happy.
We did decide to stay the course.
I'll try my best to share what's the worrisome stuff:

1. Might have pneumonia, will get an antibiotic, likely liquid, tomorrow.
2. Mediastintum where I've been radiated/have tumor/been fighting/been cut up/operated there, etc.... is growing, more active. Plus found a new tumor area near the mass.
3. Abdomen hasn't been brought up before... could be cancer in there in the lower right quadrant, hmm.
4. Could also be peritoneal disease which is not something new for cervical cancer patients...
5. I have what's called a "Mixed Response" overall to the Nivolumab.

She also mentioned that she just got back from a conference where they discussed these checkpoint inhibitors, like Nivolumab, and how they're just not as straightforward as we'd like... and to stay the course and be patient. Guess I can do this.
She also mentioned that there sometimes are "pseudo progressors" which also she said might signal that we need to give more time.

Well, plugging away, going to be a little quiet and introspective now... Staying positive as I can. Resting where I find time. Working to get better sleep, here's hoping.
Wishing everyone well,
Thanks for journeying with me.

2 more months I'm going to stay this course, shall see. Every other week Nivolumab I believe, shall see!...



Saturday, December 5, 2015

Waking up happy can be a good thing

Birthday girl with her cupcake sweater- couldn't get the cupcake
earrines in the shot, sigh... Hi to my great brother-in-law as well...
So, it has been almost two months since I began my immunotherapy, tumultous months with the stinking feeding tube added in.
Last week my friend, thanks Catherine!, found me the powdered version of pocari sweat, happy day, saves money, reduces plastic bottles, thrilled... I'm still taking in Gatorade as well... I'm so happy to be avoiding dehydration for two weeks now, it is a relief. NO bags of fluid going into my veins, hooray!! If I could say the same for the constipation and coughing I'd be thrilled but I'm working on those.
I was able to go to work all this past week which I know isn't a big deal, but for me... it was. I so enjoy having enough stamina... and also am resting at the end of each day a huge amount.
It was fun to see family this week for my sister's birthday (Happy Birthday Rachel!!!) and was weird at the same time to not see my parents after consistently during the week after having them help me so often during past weeks. Grateful for their support.


Cheese!
I'm thrilled it is December but also overwhelmed since my kiddo has a big birthday next weekend... he's such a big boy and growing so fast. So grateful to be here for it...

Today was a good day. Sure I still needed a mid-day rest. Sure I still am exhausted. I did get Nivolumab this morning with my friend Catherine. We had a good time chatting... it was the first time in a while I could actually have a sustained conversation, such a relief to be able to communicate! I also got to find some medicine that my naturopathic dr. suggested for the cough and stamina as well.

When I woke up this morning I had the realization that I now can sleep on my back again. I've been unable to do this for months- since the tumor in my back created such pressure I was in pain even lying down that way. I am taking Advil on a regular basis as my gastro-enterologist recommended, might be that reason... BUT Could this mean that the tumor is shrinking? I should hope so. Nivolumab, do your best please. I'm trying to pave the way!
I'm trying to eat. I can take little baby/bird bites and water in between and can get 1/8 of what I used to into my body- leads to a good takeaway container but still I'm not "eating" like I'd dream of... shall see. I do now weigh in at 122 pounds... super exciting, over 120 again is a start towards healthy!!

I'm working to take quiet time, meditation time, restful moments. Sometimes that's hard because all I want to do is zone out and watch a tv show, but I'm trying.

Love my mom...
I found out that my oncologist wants to do a PET scan, sigh. I was really hoping for a CT but ok. I'm scheduled for this Thursday to get one done. PET scans suck to be honest... fasting, isolation, needles, but I'll get thru yet another one- 2nd one here in Oregon, 5th one overall I've had...
The following Tuesday I'll see my oncologist and go over the results of the test. Here's hoping for good ones. I won't go alone (my mom will come, she is very good at hearing EVERYTHING said). Never again will I go alone to an appointment with PET scan results. Learned my lesson on that last August.

Well... going to rest again now. Read a few good books recently and am loving an audiobook I'm listening to... I was stuck in another one and not enjoying it- solution? Take a break.

Wishing everyone a wonderful holiday season. Hanukah snuck up on us, can't believe it begins tomorrow night. Kiddo is thrilled of course. I'm just struggling to wrap presents for family in other states and think out mailing them, etc. It was fun to sort out what I bought for the holidays since I hadn't thought much about it since July. I do plan gifts way in advance...

Thanks for journeying with me!

Friday, November 27, 2015

I still see me...

I've been thinking about things...
During my quiet times where my body is saying, "No, don't get up yet, you're not ready."
A fleeting thought at one moment this past week was that I felt so frustrated to not be me that I know anymore.
Every once in a while I come across this thought.
I miss my stamina- gotta work on building it up again.
I miss my voice. Sometimes I just can't talk the way I want because I'll go into a coughing fit.
I have learned to accept, adapt and appreciate most of the time.
Then there are other days where I just wonder where am I? Am I still who I was before my cancer diagnosis? How do others see me? I know many many wonderful people have told me I am not just a cancer patient. I am someone who has many interests, passions, and ways I exude energy. Do I still? I feel like sometimes I'm living in the shadow of my past. So. At this time, I had my phone with me and I hunted down a few pictures I liked of myself after we moved to Hong Kong but before my diagnosis. They made me happy. Then I came across that picture I took of myself on a conference day recently... I still see me. I see myself in everything I do. I see myself in my patience I've learned to use more consistently. I see myself in the hope I have for the future. I still see myself in my determined actions and love I share with others. I'm a little wrinkled around the edges some days. Weaker. I need to be careful in ways I never had to before but I'm still me... It was refreshing to have this low moment I could pull myself out of with a little reflection. I did honor the time with a collage of the pictures from before diagnosis and the picture of now. I still see me through all these pictures... I sometimes had low quiet days then too... hunker down and read for the day days... curl up and watch shows and movies with family days, relax on vacation days in the hotel room or in a lounge area...  I love life and appreciate all my memories...

This past week was ok. Saturday was Nivolumab day- was hoping to go to a conference after the infusion but realized it wasn't a good idea... Sunday I got to see a very special friend in the morning and then I rested a lot. Only had work Monday/Tuesday. Was able to work all day Monday but Tuesday was a no-go morning but after a few hours (3) I was able to head in and teach classes and speak for a few seconds at the staff meeting without coughing attacks. (looking into allergy medicine next... shall see if it helps).
Wednesday I woke up shaky... I was really nervous because I was going back to my gastro-enterologist and it was really stressing me out. I went with my parents and son. My dad and kiddo entertained themselves while my mom and I waited a long time for the appointment. I thought there was an infection there, reassured me many times that there wasn't... Hmm. I give the wait to the fact that the doctor cares a lot and takes his time with each person. So when he came into me, he had me lay back after we talked for a few minutes. He started moving my feeding tube. I yelped, cried, asked what he was doing- he was tugging, twisting, and turning the tube. No warning. My mom teared up on the other side of the room. Seeing her tear up made me calm down for some reason... He explained that he was loosening the stoma area. That the clamp that was putting pressure on my abdominal wall and stomach wasn't necessary as much anymore after 5 weeks because there was enough scar tissue there now. After wiping away those tears and giving it a few minutes I could feel a drastic difference. 5 weeks of pain a little more explained. The doctor requested that I start using the plunger in the evenings/when it is harder to feed myself with simple elevation. Then he told me to drink Gatorade thru my feeding tube to get the fluid and electrolytes I need vs. going to get a fluid bag push at the oncologists. He said "less needles is good, right?" I've tried. Finding I'm doing ok. Euch to Gatorade. I miss Pocari Sweat from Hong Kong... a lot. Apparently Uwajimaya has it- shall visit quite soon!

I went directly over to the oncologists though and checked in with the nurse who agreed about the Gatorade and did one bag of fluid... and took yet more blood. My white blood cell count is still up and a puzzle to her. She said I must be just finishing some bug off and need to be patient as I heal.

I was really wiped after two dr appointments and was glad to get home to my husband. He and the kiddo had some fun together after the sweet boy was stuck an entire day from one dr. office after another... even with all my dad's support- no fun... but he did have a "busy bag" filled with books and entertainment...

Love my sister
Thursday I woke up and did my morning feeding routine but could tell it wasn't time to move yet. I pretty much didn't move beyond feeding myself and drinking loads of water til 2pm which was frustrating but I accepted that's where I was at. Eventually I pulled myself together, went with my husband and kiddo and got to go to my sister and brother-in-law's home for Thanksgiving. I found myself really quiet and reserved. Every time I talked I started coughing pretty quick but it was wonderful to be with everyone.
I actually ate a little food (baby bites, slowly) and loved it. Happy day.

Today I've had three beautiful visits- two by Skype to Hong Kong- man I miss those wonderful friends- and one lovely visit at my house... I'm so lucky to be surrounded with love and support here in Oregon. Also, I'm lucky that people watch and pace themselves with visits with me without staying too long, even on Skype. Very grateful.

Thanks as always for journeying with me...



Family shot from Thanksgiving.

Saturday, November 21, 2015

A bit of a down week

Had to go to the dr. for pretty much the whole day on Friday. Somehow, I have an infection (something bladder related?) and also I was dehydrated again.
Sigh. How was I dehydrated? I don't know. Really. I'm drinking water all day. Swallowing water has been much easier lately. And today I had a yoghurt... I don't know what's going on but I am still eating slowly but starting to "eat" again here and there which is a relief. One of the nurses today when she was administering my third dose of Nivolumab said that I needed to not forget how to swallow and then corrected herself realizing that I'm still swallowing...

Was really relieved to get Nivolumab today. And then on Dec. 5th is my 4th dose.... then my oncologist wants to do a CT scan to see about tumors, etc. Crossing my fingers. Staying mostly positive... although this week when I was nearly blacking out again because I was dehydrated was really confusing. Glad I got into the dr on Friday and had things checked out. On Monday I saw my oncologist and she brought up that I might be dehydrated but then said that all the lab work didn't indicate it... so I didn't contradict... but now, if I wake up shaking, almost faint, etc. I'm calling right away to ask for a fluid IV push. I've never liked needles stuck into my arms and getting fluid that way does suck... had to get 2 bags yesterday which took 1 hr and 15 mins each... but well worth it for waking up today without feeling faint. I also had to have a chest x-ray to make sure that I didn't have pneumonia or anything, nope, phew. And the feeding tube was part of the x-ray and everything looks "right" with it- good... now if it would just stop sending pain waves I'd be happy...

I have been losing weight. I admit it. I shifted back to the original formula mix for my feeding tube that has more calories and am trying to eat things that might boost calories as well. Going to start bringing drinks beyond water and formula to school again in the hopes that I can stay hydrated and boost my health. Shall see.
My oncologist told me part of the reason the feeding tube hurts me so much still is that I'm so darn skinny that there's no cushion. So everything is pretty darn sensitive. I've noticed that, especially those days when I'm stuck in bed and feel bruised on my hip because I can only lay on my left side and that hip is just skin and bone... Can't wait to gain weight. I remember when we got home from Hong Kong and I was so proud to finally be at 130 lbs, oh where did I go wrong back then? Oh yeah, ding dong tumors...

Thinks I noticed randomly connected to using the feeding tube:
1. The clamp on the feeding tube is really useful.
2. If you don't have the clamp locked and you're feeding yourself, do not cough. Do not blow your nose. Otherwise you are going to get an explosion of liquid and other things from your stomach. YUCK.
3. I don't "push" my food in, I pour it in a tube thing and then have to wait for it to drain into my stomach. If it is the end of the day, it doesn't go so smooth. What normally takes 15 minutes to feed myself takes 30...
4. If I lean back at an angle, my stomach releases air and makes freaky sounds. (I think they're freaky, as does my mom, my husband on the other hand hasn't said a word.)
5. Do not get distracted when feeding yourself. Especially towards the end when you're really just wanting to be done. That's when mistakes happen and your stomach gets the better of you and water spills all over your jeans mid day at work... sigh.

I look forward to chilling out tomorrow with a few very good visits and then getting back to work without worrying people. On Thursday I called my parents and asked them to accompany me home because I just didn't trust how I was feeling... Sigh. My parents helped me for three days straight with visits and appointments and support. Very grateful. This past week was shoddy for my attendance... Monday was ok, Tuesday I left at 1:30, Wednesday I went to a meeting at noon- couldn't move sooner without feeling faint, Thursday I went to work after noon and stayed til 4 and then had parent support... Friday- missed work. Hate how quickly I'm using up sick hours/days that I'd accumulated so conservatively through the years in my district but thank goodness I have them... very grateful.

So... my focus presently is to figure out things (besides doggone dairy) that will boost my calories but won't make me choke or hurt - tried to eat some noodles yesterday. Whoops.  Didn't get stuck/pain in my esophagus but it was close... and as anyone close to me knows, I live for noodles... Sigh. I'll figure out a way.

Thanks for journeying with me as always... quietly getting thru the days.

Really interesting approach to Parkinsons Disease:
http://www.cbsnews.com/news/fighting-back-against-parkinsons-in-the-ring/

Sunday, November 15, 2015

Surprise visit and riding waves of energy



Another person who can get me to smile at the chemo appointments.
Perhaps it is because of the drug I'm getting now that I can smile more, hmm.
My brain is packed with randomness. So, you've been warned.
It has been a bit of a packed week. But also a week packed with downtime.
On Friday last week I got home and was resting after work. Every day I come home and rest after work. Only way I survive each day, in fact some days I don't last the whole work day unfortunately... I have to leave an hour or so earlier because I was so fatigued. Grateful I have the flexible hour approval with the school district.
Wonderful down time with friends... so grateful.
So last Friday my husband requested I come into the family room. He sounded a little off. I'd chatted with my sister earlier and she was going to work out... Then my husband said my sister was coming over. This puzzled me to no end. He said she had a surprise with her for me... After she arrived, my best friend, Sheli, called and asked if I'd received the essential oil she mailed me. I admitted I hadn't and asked why she was calling. Went to the front door and there she was... with the oil and a hug. I'd won a Sheli lottery, wonderful to have the bonus surprise time with my treasured friend.
Sheli was there in time to go with me to get Nivolumab on Saturday and meet up with my sister and another wonderful friend and go stay in Manzanita, OR... beautiful house and peaceful place to retreat and relax. All organized by my wonderful sister, so grateful.
Then we had a week of work together, including a holiday on Wednesday... Tuesday my son and I were committed to volunteer at Oregon Food Bank and Sheli was kind enough to volunteer with us. I found that over 2 hours there was a little too much physically. Grateful I spoke up and had a chair to sit on. But I was pretty drained at the end. Our Mother-Son book group had finished the book Among the Hidden by Margaret Peterson Haddix and agreed volunteering at the food bank would be a good concluding activity. I honestly was really tired of carrots, twist ties, and plastic bags by the end, but we all knew that we were doing good.
My husband got sick on Monday... he thought it was food poisoning. I still don't know. I do know on Thursday I was feeling a little nauseaus in the afternoon and wasn't sure if I was sick with some type of flu and my anti-nausea meds that I take twice a day could be covering up symptoms... so we left work early and I went to bed for hours...
Right after Sheli surprised me... happy crying. What a friend.

Sheli dealt with me having energy at times and then being absolutely flat other times. On Wednesday we had special time together and what did we do? Sheli organized me with projects around the house I didn't even realize needed to be done but now I'm just so grateful for all the things she did... Even when I wasn't around she solved little electricity issues we had around the house... and she is not an electrician... AND she helped me with some grants I was writing and working on at school. So grateful for all her amazing support... from afar when she's in Alaska and we're visiting weekly and  when she visited and cared for me last year when I was in the heavy duty chemo rounds in Hong Kong and now... what an amazing friend. So lucky... so lucky. Plus she got to see my family- and she is part of our family and is loved my by parents and sister...
I am really working to be patient with my energy and still finding it challenging to read and follow thru on what I need. I really do know that I cannot just push myself as I did last year. I'm not at that point anymore.
Sheli left Thursday night. Sigh.
Got thru work on Friday and then rested Sat. and Sun. all day. No pushing myself at all. Enjoyed the few glimpses of hours where I did feel stronger and got basic chores and such done. Watched many shows... Kiddo was sick for a little bit on Friday evening so it worked well for the whole family to chill this weekend...
Had an interaction where I met people for the first time, very nice people. When they met me they both did this head tilt that made me wonder... and later when I asked my husband, 'do they know about the cancer?' he said 'yes'... Ahh. The head tilt. Got it. Very nice people, grateful to meet them.

I learned this past week that besides weighing myself daily and checking my temperature, I need to also report any issues I have with my stomach- my Dr. was quite concerned when I called for advice about how to take medicine for constipation if I was having diarrhea. She calmed down and wasn't worried once we talked things out but she also lectured me about how a side effect of Nivolumab is colitis and how she would need to put me on another drug to help with that if I continue to have problems... sigh. Haven't had issues since then... Shall keep close eye on my body. Even though I've felt fatigued, etc. I haven't had a rise in temperature...
I've now had 2 doses of Nivolumab. Every other Saturday is when I get it which is helpful... I also see my doctor around 5 days before... It is interesting that I get double on the blood tests for the chemo. Things add up, as I've said before, I feel like oncologists are secretly vampires...

So. Here's to a week of wonderful friendship time, good resting time, family time, good support, volunteering, working and more. Sheli called me "unstoppable" but honestly, I'm just riding those waves and trying to be really wise about what I can actually do.

Thanks as always for journeying with me...

Thursday, November 5, 2015

Tenatively working, very carefully...

Well.
Went to a memorial today for a beautiful person. Broke my heart and lifted me at the same time.
I gave in a little to my body. Was concerned in the morning because I was a little too shaky for my liking, so I stayed home for a few hours and then went to a work meeting. It was a wise choice. I needed it... really trying to read what is going on, sometimes it is too hard though.
I've been in a bit of heck for three days. Seem to have turned the corner today.
So. Word of warning my friends. A gross one, sorry.
When you haven't gone #2 in 2 weeks, having the problem resolved can be very, very, very painful.
My oncologist looked like she wanted to put me in the hospital when I told her I'd been constipated for a little too long. She was upset. Gave me prescriptions and I followed her directions. What followed totally sucked. But it worked by the 3rd day and now I'm doing better. NEVER NEVER NEVER my friends, NEVER let constipation go so far. Seriously. I'll just say that I felt like I was giving birth in a way NO ONE should EVER experience. Scared my husband with the pain sounds I had (didn't realize he was home, thought I had a little time to myself to just yell, poor guy).
So, that's enough of that. One of the prescriptions I'm on gives this side effect, so I'll be taking yet more medicine to avoid for the future (plus natural stuff too). Blech. Unfortunately, swallowing still sucks. So so good that I have a feeding tube. When I got the prescription the other day, I tried to swallow the pills. That was hard. Now I'm crushing them and putting them in my feeding tube. Whatever works. Poor body is way too tired of pills, I'll respect that. I'm very tired of pills as well.

But at least my muscles had mostly recovered from the other pain from the feeding tube so they could help me vs. hinder the situation further.
Sigh.
I am sort of feeling stronger. Think I was shaky this morning because of the final evening of heck, feeling a bit better now.
Hoping for a stronger Friday/weekend. Shall see!

I'm very excited for my second dose of Nivolumab this Saturday. My sister will be with me which always brightens my day. A year ago she was with me helping out with chemo treatment in Hong Kong. So happy to be home and a quick text/message/phone call/visit away now.

My oncologist wants to have me go thru a scan after 2 months, which is 4 doses. Shall see. I'm picturing my immune system working the right way and those darn cancer cells dying and tumors shrinking.

Good news? Monday I got on the scale and it said 119. HALLELUJAH! Still gaining weight... Shall see what it is tomorrow. Might be a little lighter after those few days of heck this week, but never know.

Thanks as always for journeying with me. Appreciating the time I'm at work, home, visiting with people... so grateful for every day and all the beautiful support I receive...



Saturday, October 31, 2015

No work yet, missed? 1.5 weeks...

Hair is growing!
I love spending time at home, with my dog, with my mom, but really and truly, I really had hoped I'd be back at work this week. I was so wrong. This optimistic nurse on Saturday said we're getting you sorted out so that you can get right back into work come Monday. That did not happen.
I had to advocate for myself in an aggressive manner this time. So, thought I'd share some of the communication... but honestly when I think about it now, it wasn't as terrible.... oh yes, it was... but I didn't have to write everything I did to the nurses... I admit that...

Sunday I felt fully debilitated. I was hunched over in pain. Couldn't stand up straight. Couldn't get comfortable in bed. Was in simply terrible pain. And I was so sick of doctors offices by this point...

I sent this message on Sunday evening:

Me:
The feeding tube is working well, I'm up to the suggested amount of food and water but I am in frequent internal pain. Unsure if the tube is pushing at something inside but I can't walk without being hunched over in pain and I can't lay down without massive painful muscle spasms. The incision site is clean.
Not sure who to contact. Frustrated and concerned.
The home nurse was helpful but did not trim the tube hardly at all so I am taping up a really long tube which is frustrating as well. It is at least 8 inches long.
Would love advice. Children's Liquid Tylenol helped a miniscule amount but I'd like to focus my energy on being strong for the Nivolumab to do what it needs to do. Don't think my stomach muscles have relaxed in at least 12 hours.
==

Then on Monday I had these interactions:
===
Nurse: Hello,
As I mentioned on our phone call, Dr. ___ would like to to follow up regarding the pain from the PEG tube with the GI team that inserted the PEG on Friday. She is not concerned with you taking the Children's Tylenol for breakthrough pain, and encourages you take this as ordered for pain.
You may want to use heat, or cold, to your abdomin to help ease the cramping.
We hope this resolves your discomfort.
===

Me: Thank you,
I know this is more than just discomfort. I've had a hysterectomy, a partial lung removal, a lumpectomy. I've had drains before in me for days. I've had pain before. I'm good dealing with pain. Honest. This is debilitating. I cannot stand up straight. I cannot walk without pain. I cannot lay down without taking 10 minutes to situate myself. This is more that just discomfort. I am very concerned. Please help. Pleading now.
I honestly think someone should actually look at me instead of telling me to use a heating/cooling pad. I depend on my job. I had to take another sick day. I'm very concerned that I'm still stuck in bed.
===
Nurse: Hi again,
I noticed this message because it was under Dr. ____ but the provider who placed your PEG tube was Dr. ____  so I will be sending the message to her team to follow up with you.
Take care, ___

===
Nurse: Hello,
This is P___, RN of Dr. ___.
I am sorry I haven't been able to reach you via phone but I discussed with Dr. ___ and she believes you should be evaluated in the Emergency department in regards to your debilitating PEG pain.
You might need a CT-scan and the GI fellow on call can see you in person there.
We want to make sure you are safe.
___ RN

===
Me: Thank you. I am waiting at the ER. Honestly feel like I'm being punished being sent to the ER for speaking up for myself.
I've never been sent to the ER in the two + years I've dealt with cancer.
The germs and exposure here in addition to wait time for goodness knows how long is not pleasant. I just had chemo/immunotherapy treatment on Saturday. I was told to avoid germs.
But I'm doing as I've been told.
Thank you.
======
Nurse: I am sorry you feel this way Debbie, but we don't know what could be wrong unless somebody lays eyes on you. Unfortunately, at a clinic setting we don't have the ability to see patient for urgent evaluations that your stated pain warrants.
I hope you can be seen soon in ED.
Sincerely,
___ RN
======

Posted this after the ER visit:
Home from ER after 4 hours. Glad I got seen instead of accepting being put off by doctors but man I didn't enjoy the ER much. 
I found out I'm a special case (go figure). I'm 1 in 10 patients who have a feeding tube complication of basically a charley horse/massive pain at the incision area where they cut thru my abdominal wall/muscle/nerve. So pain should subside soon enough (they said 4 or so days) So relieved to have an answer. Pain meds might help. Thanks to all concerned. Just chilling out at home and appreciating my parents who have been thru too many days of my medical mishap lately.

===
So, that was Monday. Now it is Saturday.
Today, Saturday, is the FIRST day I am able to easily get up/move around/have energy/almost feel like "me". Seriously. That's 8 days after the procedure that I was supposed to recover from within 24 hours. Harumph.
I missed work all week including a costume book character celebration (broke my heart to miss), a book fair (I've missed book fairs for the 3 years in Hong Kong and was so upset to miss my first one at my new school, everything went smooth because there's an amazing team/staff who manage it but MAN I hated to miss it...)
Bah. 
Hooray for feeling a little human.
Not fond of the formula I'm on but yesterday I went with my mom to my naturopath and we discussed how to make my own healthy formula packed with greens, vitamins, healthy energy mix, etc. Looking forward to trying out soon. 

What am I dealing with now? Pain- if I cough, heaven forbid. I'm pretty debilitated if I cough. My recovery time from a coughing fit is much quicker though. Not quite standing up straight but MUCH better than before. A mom who has watched me at my lowest and celebrated me getting around smoothly today. Pile up of emails at work and learning to let go once again.
Weight. I'm up to 115 now. Stable there. Hoping to gain more consistently, will see. Crazy to be below 130 in my opinion but I can gain it again... I'm sure I can.

VERY happy to be on Nivolumab. I'm excited and hopeful. Seriously hopeful. So grateful to people who have helped out. Receiving a book on feeding tubes and recipes, etc. last night was a gift, wonderful surprise. Kiddo getting to attend an awesome Halloween party and being so happy... plus his final soccer game today. 
So relieved to count on my parents. Relieved that my husband has a job that is turning out ok. Relieved that the kiddo is starting the after school program on Monday. Hopeful to go to work on Monday, shall see, won't push myself!

I was recommended to visit this feeding tube community:
Feeding Tube support community: (very overwhelming site)
http://oley.org/index.html

Not too much else to share.
Hair is growing out and getting unruly. Love it still but man it is starting to be an afro... want to grow it out for another month or so and then will try out getting a very light trim. Happy happy happy to have hair. So relieved the Nivolumab doesn't make my hair fall out (yes, I'd still take it if I did make my hair fall out, but I'm celebrating having hair here!)

Hooray for hope.
Thanks, as always, for journeying with me...

Sunday, October 25, 2015

Feeding tube? Check. Nivolumab? Check.

Catherine and I- she can get me to smile in a dr. office!
Yesterday I got my first infusion of the immunotherapy, Nivolumab. Scheduled to receive it every two weeks indefinitely... A nurse I was chatting with said this about my new oncologist "People don't get in her way..." So happy to have a strong advocate in my court...
Happy first dose is in. Sure there are a few worrisome side effects but worth it for hope and life longevity....

I got the feeding tube on Friday and learned how to use it Saturday. Happy to be getting some nourishment. Internally the tube is a little torturesome, makes muscles spasm whenever I move, incredibly frustrating. Trying to breathe my way thru the pain, shall see if this is something I heal from or if I have to get used to... Laying down takes me five minutes to slowly move and avoid pain spasms... same with walking and presently I'm walking hunched over, not healthy. Tried kids liquid tylenol and I think it helped a bit... I'm on additional pain medicine that's keeping tumor pain mostly in check... Stood on a scale today and was at 118, hooray!!!!! If I wasn't dealing with the pain I think I'd be doing so much better stamina wise. Certainly have more color in my cheeks... and haven't felt like fainting since Wednesday, phew...

It is odd to feed myself by tube. It is a ghastly long tube in my opinion. The home visit nurse cut off around 6 inches and still it is long!! I have protein drinks I use and add in water before and afterwards. Almost scientific...

This ding dong IV was in me for 2 days...
so a new line didn't have to be started...
happy bees tape this time!
Want to get back to work but will see about this pain first...

Grateful my friend Catherine went to my oncologist appointment and feeding tube procedure with me on Friday and also my first dose of Nivolumab on Saturday...
My mom and husband also learned how to use my feeding tube... and my happy boy had a great time with my parents on his day off school and then loved a fun fulled time with his aunt and uncle for overnight fun. Happy he has stability and fun. He's worried about me so it is good he has happy healthy distractions...

Saying "yes" to offers of help has always overwhelmed me but I am doing so more frequently. My friend Miriam visited and cleaned our much needed to be cleaned bathrooms... so grateful and relieved... my mom has also had a eagle eye on many ways she can lighten our loads... Doug and the kiddo can only do so much, especially with Doug working full time now (hooray).

Hi feeding tube. Looks small and easy, right? Wrong....
Watched a little bit of the series: The Truth about Cancer, A Global Quest- important info but long and honestly draining for me to watch.
They mentioned something, The Gerson Therapy- not right for me presently, I've read about before: http://gerson.org/gerpress/the-gerson-therapy/  Interesting approach... Also https://en.wikipedia.org/wiki/Hoxsey_Therapy the Hoxsey Therapy was an interesting health practice approach...

Thanks for journeying with me as always, feeling like things are starting to look up... slowly but surely...






Wednesday, October 21, 2015

So I had a really (stinking) hard day...

Today sucked. Seriously.
Statements first:
1. My mom is a genius.
2. I work with incredible, caring, thoughtful people.
3. I need help when I'm starving and dehydrated.
4. I do not think straight and need help making decisions when I'm starving and dehydrated or simply overwhelmed.
Ok.
I woke up and felt nauseaus..
So I took an anti-nausea pill.
I took a shower and had to lay down afterwards in my closet and then in bed. I wasn't feeling terrific. My husband helped me get dressed. He questioned my determination to go to work.
I thought I could handle it with a drink of protein shake on my way to work.
Not smart, stupid in fact.
I didn't realize how far gone I was. Really.
I got to work driving ok but not swallowing worth a darn, only one sip of protein shake.
I've had trouble swallowing even water the past few days. Seriously. Water. I took a sip of water last night and leaned over to do something and felt the water come right back up.
So... I haven't been drinking well or eating at all for a few days. It took me 3.5 hours last night to drink a mug of bone broth.
Today it really hit me.
I walked up the 10 stairs to get into my school and felt light headed. Wasn't sure what to do.
Walked down the hall. Started to have a ringing in my ears.
Saw a lovely coworker and asked her to help me with my heavy 2nd bag and told her I thought I might blackout. Got to the library office and promptly laid down on the floor at the back of the office. Knew I wasn't doing well. Scared and worried many people.
Some lovely people insisted that I come to the sick room to lay down on a more comfortable bed. I started hearing the fuzz in my ears and got dizzy on the way to the office. Sigh. Two people walked me there.
It helped to lay down. One person after another sat with me and talked.
Reminded me that work will go on and I should go home.
I surely didn't disagree but had a hard time letting go.
One person took control. Cancelled the classes I was meant to visit, told me that two people would be helping me get home with my car so that I didn't have to worry about it. I cried. So grateful. I was just worrying about how to get home and deal with the car.
I was driven home by a beautiful coworker who helped distract me the whole time with easy conversation and another wonderful person followed us.

I'm taking Thursday and Friday off.

My mom came over and flat out told me: "Debbie, I thought about it on the drive over. You are terribly dehydrated and the pain is out of control. You must get fluids in you with an IV, call the dr. now."
I called 3 doctors, ended up going to my new oncologist's office. So grateful I did.
1. I now have immunotherapy scheduled for the first time this Friday, no worries about my condition. "Debbie, you are not in a wheelchair with a breathing machine, you're fine to get Nivolumab. Oh hallelujah.
2. The nurse helped me understand about feeding tubes more. I'm over my fears and concerns and stubborness. A friend told me today "sometimes stubborness can be your worst enemy."
3. The nurse helped me get over fears of pain medication.

I got pumped with loads of liquid, it took over 2 hours and 30 minutes to get the two huge sacks of liquid into me. They also gave me a small amount of pain medicine which helped me...
I started feeling a tiny bit better around 45 minutes in... started feeling more human after 1.5 hours. Wow was I dehydrated. I now know that you lose a lot of weight when you're dehydrated. I weighed in at 114 pounds. Started crying when I saw that until I was told about dehydration impacting weight... sigh.

Pain is still there. A little more dull. But shall see with the help of the immunotherapy on Friday. Shall see about the feeding tube. I'm hoping it will be placed tomorrow but I'm aware it is a long shot.

I had an explanation about things that wasn't wonderful to hear but I now understand a bit more about my esophogus... so the specialist last week brought  this up but I didn't understand very well... there is space in my esophogus to swallow. The specialist and the dr both think that it is motility vs mechanics. This means nerve damage (possibly from that last round of radiation in the area) might be affecting my ability to swallow vs. tumors pushing... which means I might have trouble swallowing for a long while even after tumors shrink.
So... good thing to get the feeding tube. The struggle and pain I go thru swallowing presently sucks. Shall see.

So I'm home. Still struggling to swallow. Still dealing with pain but feeling immensely relieved to simply have things a tiny bit sorted and not completely feel like junk. So frustrating to me.
Letting go.

Not the most positive post but got thru this cruddy day with my mom monitoring and helping me out, my dad taking care of kiddo after school, amazing coworkers sending me messages and support, and more...
Very glad to be home. Resting. Looking forward to immunotherapy... my poor veins... but I have a lot of hope.
Thanks for journeying with me...

Friday, October 16, 2015

Well... clinging to hope



Choosing the temperature of the air being
pumped into my hospital gown.
Had the endoscopy and was disappointed. My surgeon decided once he was in my digestive tract that a stint wouldn't stay in place. So nope. No relief from the food hell I'm presently in. He strongly encouraged me to get a feeding tube set up. :( I said no. I'm going to try try try to eat enough when I can eat to maintain and gain weight. And I hope that when I start the immunotherapy drug the tumors will shrink and lessen the pain/pressure. Shall see. Family and I are thinking on creative fatty foods, especially drinks and soups. Shall see...
Serious me... Just a had time smiling at a hospital...
Ever see a hospital gown 
I honestly did melt down for a while last night going through doubts and regrets over my stubbornness and how the feeding tube could have been put in during that procedure... money, going thru the procedure again, etc. Oh well. Debating and hoping still. Shall see. Hoping for that immunotherapy to help me... trying my best to stay positive. Might give in eventually to a feeding tube but perhaps one that is actually through my nose vs. another incision/tube sticking out of my body.

Still heartbroken by cancer taking special people's lives and impacting other people's lives. Made the mistake of watching a inspiring but upsetting movie- The C Word.
http://www.imdb.com/title/tt3568218/

So there's good things happening lately...
1. My husband got a job and begins next week, hooray.
2. My parents are supporting us for a few weeks with our kiddo while we transition day care situations.
3. My son was just accepted into an after school care program that will give him a lot of practice in Mandarin, thrilled since we knew that his knowledge was fading quickly since he didn't have any new practice in talking Mandarin in months. He starts in November and is open to the classes, phew.
4. Soon enough I'll get to go on immunotherapy that will hopefully knock out these tumors... I know it is a stretch but miracles happen, every day.

Hoping, believing, and loving every day I'm alive, even the tough ones...  thanks for journeying with me...


Monday, October 12, 2015

More hope, yes thank you, immunotherapy time is coming

At the technology/Future Ready Conference on
Friday. Had to wear my shirt to show that I'm
balanced between technology and print materials.
So, something happened today that should have occurred four months ago. But I've accepted that we're simply here now.
I saw my new oncologist today.
Got very clear, honest opinions from her. Received hope, hope, hope.
My husband and I walked away saying, "Yes, this is what we need."
Shall see about that one immunotherapy drug that connects to my biopsy/Foundation I testing. It might take some time to get approval for it. My new oncologist is willing to have me get that still. BUT she's working now on getting me on what I wanted to get on 4 months ago: Nivolumab. An immunotherapy drug. It is the one that is in a phase II study for metastatic cervical cancer patients.
 http://www.chemocare.com/chemotherapy/drug-info/Nivolumab.aspx
https://www.mskcc.org/cancer-care/clinical-trials/15-116
She wants me off of Avastin. Said that it isn't really viable on its own and she doesn't find a need for it in conjunction with Nivolumab. I'm honestly thrilled with that.

I am hopeful.
I am grateful.
I am relieved.

Avastin with blue planes? afterwards. The nurse got
a lecture from me and was much more careful and
aware of what went wrong with our last session.
She used a heating pad and did the "drip" on a
different vein. No new bruises, phew. 

My brain MRI led to nothing new (thank goodness!)
My PET scan led to not too much new, although apparently I had some time of a rib fracture on my right side?! Odd information but makes sense where I was hurting for around 3 months on my right side after surgery last August. Apparently there's something that lit up on that side but shall see. My oncologist was not concerned. It wasn't highlighted as a concern.

I'm hopeful.

I do have to go and get the endoscopy on Thursday. Shall see about pain afterwards. Not thrilled. Shall see if the stint is put in. The gastro-enterologist is concerned about the fact that I got Avastin last Friday. He's not sure if I will heal well if there is any cuts internally. Shall see what he decides. I just want to swallow consistently again. I'm on Prilosec which seems to have eased some things in the morning a tiny bit- less throwing up incidents, but still having issues overall. Getting food in as much as I can but I'm now down to 118, sigh. At least it isn't more, I guess.


Bridge on our way back home on Hwy 101.
Friday was a bit busy with a tech conference, a chat with my oncologist during one break, Avastin treatment, and then meeting up for a carpool down to Coos Bay. My friend and I chatted all four hours on our way to Coos Bay, so wonderful... The doctors on Thursday had looked at me with raised eyebrows when they heard my plans for the weekend but I had faith that I'd planned things out well enough, and I think I had... I actually was able to get to the conference in Coos Bay and present on Saturday. I took a lot of breaks that day but really enjoyed every minute possible. Loved meeting up with educator/school library colleagues from around Oregon and also some beautiful, inspiring author friends as well. So many wonderful hugs exchanged, filled me with such happiness... Overwhelming a little bit, but in a good way. Sunday I slept and rested and rode home with my lovely friend who was fine with a quieter Debbie and an audiobook.

So... getting thru the days. Looking forward to a few non-medical, more work focused days. Hooray for them.

Thanks as always for journeying with me.
Here's to hope.
I loved seeing this blooming still...



Thursday, October 8, 2015

5 appointments, 3 days, sheesh

Gonna miss my kiddo when I go to a conference for the weekend.
Just finished a good book with him and quickly are going to shift
to a new one... Haven't missed a storytime with him in a while... Even
the days when I'm coughing and unable to read much, we still have our
time together...
So. Yesterday I had to go get a PET scan done and I took a sick day since I knew I'd be useless at work before the scan since I had to fast for it.
The scan is still as isolating as it is in Hong Kong. Similar everything. Scans suck a little more now since I don't prefer to lay on my back since pain is ridiculously bad after 5 minutes. Having to lay on my back without taking tylenol? Very worrisome. Got thru it all just fine. I'm good at staying still. (Guess I have a little practice with 3 rounds of radiation!)
While I was isolated for an hour letting the radiation seep thru my body for the PET scan, the nurse pulled a miracle and scheduled a brain MRI a few hours after the PET scan.
I hated that MRI. I don't use the word too often but MRI contrasts suck totally. First I'm in a head cage and have to hold still while things bonk, buzz, whir, and shake all around. For 25 minutes. Then they injected a contrast into my poor overused vein and walked away. Nope. Not happening. Had to hit the panic button so that I could sit up and deal with the nausea side effect from the contrast, yuck. Got over it. They said it happens to those who are lightweight... Yup, that's me presently.  15 minutes more of laying still. Had earplugs and headphones on. Once in a while heard classical music. Hmm. Not so fun. Got thru it.
So I had to get both tests done for the new oncologist I'm seeing next Monday.

Today was interesting.
First I met the gastroenterologist and discussed my swallowing problems with him. Why not just schedule the stinking procedure? I'm not sure. Oh well. Next Thursday or Friday I'll be going thru an hour long procedure where they'll possibly put a stint into my esophagus. There's consequences, of course. It could slide. Go down into my stomach. It will likely make me hurt for 2-3 days as the stint expands. He only wants it in there for 6-8 months. Said it can create problems if it is there longer. Said that I have to sleep at an angle because I could have really bad acid reflux since there's no barrier anymore once the stent is in place.
Found this brochure about what to do after the stent is placed...
https://www.bostonscientific.com/content/dam/bostonscientific/endo/general/gastro-specialty/eso_stent_patient_nutrition.pdf

Next I met with my oncologist. Had good conversations with her. We went over the Foundation I results and she found that there was a immunotherapy drug that my tumor reacted three ways to "genomic alterations detected"... so she got permission from me (of course) and is now applying to get it for me through compassionate care.
The immunotherapy drug is called Temsirolimus.
http://www.torisel.com/how-torisel-works
I know it is normally connected to renal cell carcinoma. It is not on my oncologist's normal radar. She said it was very good that we had the Foundation I testing because it brought to light a drug that has a little promise. It is in a 2nd trial trying out treatment for gynecological cancers/cervical cancer and has shown promise. I'll take that hope.
https://clinicaltrials.gov/ct2/show/NCT01026792
Shall see how long compassionate use application takes. I'm still seeing the new oncologist on Monday and also another oncologist on Thursday.
We also discussed other things, liquid versions of medicine, especially tylenol... Unfortunately the Tamoxifen I take is liquid form with the flavor of licorice added in, YUCK. I HATE black licorice. I HATE the seeds as well... So I'll crush that pill.
Handed her my paper work for my Advance Directive... it came in the last Hong Kong shipping package... Good to get it sorted out and make sure the hospital knows my wishes.
Grateful a friend is helping me with paperwork and such... I'm in the process of gathering what I've already got... wills, etc.

Eating is such an issue.
Had to fast yesterday for the PET scan and afterwards met my mom and had a delicious sandwich. Unfortunately around 20 minutes into my slow eating process things got... blocked up and I couldn't figure out what to do. Had to lie down at the restaurant in a booth. Blech. Took around 25 minutes or so to recover but felt like crap and barely had any interest in dinner. Needless to say when I weighed in today I'm down to 119.5. :( Very unhappy about that but will continue to try. I'm drinking protein shakes thanks to my husband making them for me in the mornings. I'm slowly going about the days. Barely able to drink a mug of warm lemon water first thing in the morning. So odd to adjust to. But I'm trying. Dinner time is a little better. Today at lunch I had delicious soup but could only get in the broth. Sigh. Shall see. Got noodles, a little chicken and more noodles in me at dinner tonight. Better than I've eaten for a few days. Thanks mostly to my mom's cooking!!

Have another Avastin infusion tomorrow. Grateful my sister is going to be with me. I love my family. So much. I'm so grateful to spend time with them. So happy I'm close by now... Makes it so apparent to me how much I missed them last year... and how many people helped be my family in Hong Kong last year. I miss those beautiful, supportive friends...

Went to the best yoga instructor ever's class yesterday. Appreciated her advice on how to help my back, throat and eyebrows. Working to not raise my eyebrows so often. I never noticed how much I use them til now and she pointed out that it adds stress that's unnecessary. Also learned about some chair poses that should help me, give me more energy... Boy I've missed her classes. Happy to sneak in one again...  after the PET and MRI it felt good to do a healthy action.

Gotta do a crazy face too mom! :)
Thanks as always for journeying with me...
Finding promise.
Holding hope close to my heart and being patient, very patient with myself.

Tuesday, October 6, 2015

A Little Hope? Yes, thank you.

Loved special sister time... My curls are starting to poof out!
Love each and every one of them.
Had an ok day overall. LOW energy. Caught myself falling asleep during something I found fascinating, frustrating.
Work was ok.
Went to radiologist. LONG appointment.
This is a doctor who doesn't give up.
She doesn't want to radiate any time soon. She really wants to wait since the tumor is exactly where I've had radiation before... she's concerned that the radiation won't work well and will actually further aggravate my esophagus... I understand why she's concerned and honestly appreciate it... even though I also have that attitude thinking, "darn it just zap the heck out of those tumors already!"
I told her how upset I was over the stagnant course of treatment and within an hour she found a new oncologist who is providing me with another bit of hope.
I have to go get yet another PET scan tomorrow. Oh boy. Hate those when it is at noon, takes 3 hours and I have to fast 6 hours in advance. Blech. But at least there's something happening! I also have to get a MRI brain scan soon.
Possibilities for immunotherapy are there. Shall see.
Found out there might need to be a stint placed in my esophagus... will see a specialist Thursday afternoon and find out more about that. Yikes.  Hadn't heard about getting a stint before. Glad to have a doctor who covers her bases and knows what is going on. Saw a scan of my esophagus, there really looks like it is closed up partway down it...
I appreciated getting the suggestion to sleep more at an angle to see if that can help all my swallowing/coughing issues in the mornings. Here's hoping that works. My parents passed me a pillow and my husband picked me up a few more pillows as well. He referenced The Princess and the Pea when we looked at all the pillows piled up...
Really grateful for the appointment. Amazing how much more relieved I felt after the appointment. Give me a little hope people, that's all I ask...
My radiologist even called me later in the evening to fill me in on the referral. Love how she works and thinks, really appreciate having her part of my medical team...
Caught up with my favorite massage therapist the other day, was so refreshing and helpful... Grateful.
Less pain as well.
Going to qi gong classes on most Mondays and even get to see a beautiful friend when I go to class... good incentive. Really enjoying this instructor even though it is very different from my past classes.
Shall see how the rest of the week goes.
Thanks for journeying with me...

PS My love and prayers go to the Traller family. Heartbroken after learning the news that Nathalie died last night. She provided so many with a beautiful light of energy, love and hope. She has touched so many people and will be remembered through future years... The advocacy and fundraising for ASPS and children with cancer hopefully will help future children who have this diagnosis and others. Although noone should ever have to deal with cancer. Let there be much more research for rarer forms of cancer....


Saturday, October 3, 2015

Birthday and Pacing Myself


Lovely yoga time with my friend.
Special entrance to the fitness club.
Well. Already wrote this post and everything was lost... rewriting is a little brief.
Days have flown by.
Birthday treat.
I'm alive.
I'm swallowing food, mostly, mornings are hard but by dinner I'm doing better. Couldn't swallow my supplements this morning.
Today was a little challenging.
My body reminded me to stop. right. now. today when I went to a conference.
I enjoyed a morning workshop, presented about creating a reading classroom community and booktalked 70+ books in 55 minutes, and then I enjoyed watching wonderful authors receive book awards and share wonderful thoughts... After an hour, sitting in a chair was not agreeing with me. Very frustrating. I got up while the keynote speaker shared. No resolving pain or exhaustion. Went and found a couch on the other side of the building. Laid down. Took about an hour to feel ok. A catering staff person brought me water. Another person asked if they could call anyone. Then they gave me lunch early... I ate a little bit and felt a tiny bit better.
Special birthday flowers from a friend.
Special birthday flowers from family.
Went and said hi to a few beloved authors and quickly got in my car and drove home. Felt strong enough and wasn't in as much pain/exhaustion by that time. Rested pretty much the rest of the day.
Got thru the past 9 days ok. On Monday I saw a genetic counselor (mostly a waste of my time, useful for my family hopefully) and also my naturopathic dr. He didn't have much to suggest for me with the swallowing and such, just wants me to get to another oncologist to get a second opinion, that's happening in a few weeks.
Enjoyed work even with training interruptions. Appreciating not just being a cancer patient there. I'm a valued staff member. Most of my coworkers know how I am with the medical situation but they don't dig too much, just a good caring group. Love that kids are smiling when I come in the room now to teach... Also appreciated a birthday serenade from a class of first graders- good friend made sure people knew it was by birthday... I shared it with anyone I was walking around with, never been one to be quiet about celebrating my birthday.
Birthday dinner time with my love.
Enjoyed family dinner time. Went to Pastini's and actually ate everything on my plate. Including tiramisu cake...
The next week is full of medical stuff.
I'm seeing a radiation specialist on Tuesday and Thursday I see a gastro-enterologist and oncologist. Then Friday I get Avastin again.
Still learning how to read my body and be patient with myself... since my body seems to be changing, I feel a bit unpredictable.
Love my present from a former student who runs Cranes of Hope.
Lovely blessing for my car.
Thanks for journeying with me as always...

Wednesday, September 23, 2015

Well Darn. That explains a little.

I just adore my guys...
Today is Yom Kippur.
Today is my husband's birthday.
Today I couldn't swallow.
Seriously.
I've had trouble swallowing for weeks now. Keep saying I'm having trouble. Had nausea because of it I think.
So.
I got up to prepare to go to services for Yom Kippur this morning with family.
Got ready feeling a little shakey but ok overall until I finished taking my supplements and went for a bite of food. It felt stuck in my throat.
I told my husband, "Something's really wrong." Laid down on the couch. Didn't help.
Laid down in bed. Said sorry to family about missing services- glad they went without me.
After an hour I wrote my oncologist's office.
Said "I can't swallow and it is weird."
They called within a few hours.
Told me to go see my primary care physician. He was available so I went to see him mid-day.
He was concerned. I've lost 7 pounds in 2 weeks. Seriously. So frustrated about this.
He said, "Well, we have a good thing, you can still drink liquids, so you can gain weight with liquids." Yeah sure. Man, I LOVE food. I'm not pleased.
He sent me for an x-ray to see if there was some obstruction. Couldn't see anything on the x-ray. Found my scan interesting though since my internal organs have shifted a bit since my lower lung on the right is gone.
He told me I had to get a CT scan with a contrast = needle.
He performed a miracle and got one for me an hour later.
Quiet waiting room for my mom while I got the scan.
Then his nurse performed a miracle and got my insurance to approve of it within the 40 minutes it took for me to get there with my mom (I picked her up, needle = I want my mom!!! Or a loved one for support!)
The center I went to was terrific. NOT a hospital. All they do is scans, they are focused on you. That's the way to go in my opinion.
The wonderful person was able to get a line in me, quickly zip me in and out of the CT machine, put the contrast in me, again zip me in and out of the CT machine and I was done.
I've been avoiding scans.
Last week my physician's assistant (who I loved) really wanted to scan me right away but I told her I really didn't want more things zapping me/being pushed into me... can't avoid it now Debbie!

Got home.
Watched the end of the documentary on the comedian Tig on Netflix- I recommend it, loved it.
Snuggled with my dog.
Got the call.
My primary care physician called me and gave me news.
Blech.
I should have called my husband in and put the dr. on speakerphone.
Didn't realize the brain dump I'd receive... good Dr. though.

So, the tumor of my lymph nodes that was always near my esophagus/heart that was 1.5 cm or so is now 3 or so cm. It is like a little cluster of grapes going down my esophagus and ending near my stomach. There are many enlarged lymph nodes...
They could be going into my muscle wall of my esophagus and slowing down my swallowing.
This could be the reason I've felt pain in my chest, this could be why I've been throwing up, this could be why I feel like when I swallow food is stuck when it gets down to my chest, this could be the reason I've been nauseaus, this could be the reason for many things. Sigh.

The doctor then went on to say that since surgery has been ruled out they probably will discuss radiation. If I continue to worsen, I'd need to have a feeding tube... seriously!! That blew my mind.
Not happy.

The doctor said he'd be calling my oncologist/physician's assistant in the morning and discussing my case and then someone will contact me with more thoughts.
So.

I was not thrilled.
It is Yom Kippur.
It is my husband's birthday.
We went over to my parents and had a party for my husband.
My husband's kind of birthday cake- pumpkin pie!!
We had fun.
We laughed.
I ATE FOOD.
First I ate my mom's homemade matzoh ball soup. Felt fine.
Then I ate some avocado. YUM.
Then I had a few pieces of cheesy bread, because I wanted it.
Then I had a piece of pumpkin pie. Because I could.
Then I had a chocolate chip cookie. Because YUM. It is my favorite treat.
Then I had some grapes. Because I could.
So there. I ate. I didn't gag. I didn't throw up (I did throw up last night when I tried to swallow some supplements, it just isn't happening at night).
I love my sister and brother-in-law, they make me laugh and share
share so much love and happiness with everyone...
I ate.
I will give myself time.
I will get up earlier so I don't feel rushed.
I'll eat softer foods.
I'll boost my weight.
I will not deal with a freaking tube (I hope, stubborn Debbie digging in her heels.)

I'm sure I could turn this into a Laura Numeroff story- If you give a mouse a cookie... but naah.
I ate. That's enough.
My family is the best.
I love them.
I'm so lucky.
I'm so glad to be home with them.
My parents saved the day with our kiddo.
My parents are the best. Seriously.
Nope, we didn't plan the Peanuts matching gear. Just how we think.
My husband was able to recover from an interview, flat tire, and get home without worrying about our kiddo thanks to my dad picking him up...
My mom was there with me for the scan. The nurse said "You have a really sweet mom." And I said "Yes, yes I do."
I feel so lucky.
Thank you to all my family and friends who are pulling for me and praying for me. I appreciate it. I feel the support. Even in those low moments today, I know I'm loved and supported.
Thanks for keeping up on my journey. The ups and downs of it. Thanks for reading my long drawn out journals. They help me think out things... and hopefully help wonderful people understand what's going on...

Monday, September 21, 2015

Gettin' along


Buzzy smiling bees this time!
Well.
Been a over a week.
Doing better now.
Harsh lesson.
Don't be stubborn.
Don't be stoic.
If you are nauseaus and feeling shaky/weak for many days, something is wrong. Waiting just one more day to see if it goes away isn't wise at all.
I went after 8 days feeling terrible to the doctor.
She lectured me about simply calling and getting advice at least.
She told me that I needed to even email if I need help.
Sigh.
I know this.
I'm capable of asking for help.
Do I do so? Sometimes? NO. I'm darn stubborn.

So, anti-nausea medicine is a godsend when needed. As is cough medicine when needed.

I'm actually sleeping ok and stomach isn't terrible- it doesn't love anti-nausea meds but that's life.
Pain is actually ok overall. Sort of like arthritis pain in my chest and back. I can deal with it and if I'm hurting? Tylenol has simply been enough in the past days.

My dr. thinks I might have heartburn so we're trying a few tablespoons of apple cider vinegar at night to see if that will help me.

Also drinking warm happy lemon water with honey thru the day to help my throat out.

Chemo/Avastin went ok. Bruise from the needle looks hideous. Thank goodness it is long sleeve weather. Shall bring up what happened next time. Harumph. Haven't had a bruise like this in a long time and I honestly know exactly what went wrong.

My sweet snuggler
My dog is doing ok. She's gettin' along and snuggling with us like the beautiful soul she is.
My kiddo is settling into school ok overall. Grateful.
My husband is dealing with many job interviews. We have hope.
Birthdays are upon us. Husband's is first, which he really doesn't want to celebrate much.
Then mine next Friday. I'm all about saying HELL YEAH I'M STILL HERE AND LOVING LIFE!!! Here's to turning 42 without chemo or a hysterectomy on my birthday. Seriously. I'll take a peaceful, happy birthday. Enough already with the drama.

Feeling stronger on my end. I wrote my 1000th blog post on my Styling Librarian site. Feeling accomplished. Happy with what I do there.
Tired and know I am grateful for where I'm at...
Found a new massage therapist who specializes in cancer patients- pre/post/fighting, etc. She's lovely and likes essential oils, hooray.
New massage place
Appreciate the naturopathic dr. I found and the 20 mg. of Melatonin he prescribed me. Sleeping so much better than the past few years.
Enjoyed a new qi gong instructor and look forward to another class with her.
Grateful for my mom's support at chemo.
First time she could come with me.
My acupunturist said tonight, you're really getting your healthy ducks sorted out!
I also met with a Breast Friends support group. Lovely women. Good talk. Appreciated them telling me about the Dougie Center. http://www.dougy.org/  Not that we're dealing with death but they also deal with children who are affected by severe illnesses. Nice to know a resource, not that we find a need at the moment, but good to know it is there.

Still waiting on Foundation 1 testing on my tumor sample. I waited 3 weeks and then emailed since I was frustrated... they said they'd send when they knew anything.

Can't believe we've been home over 11 weeks and I'm not on anything I was hoping to be on. I'm happy I'm doing Mannatech and I have faith that it is helping heal my immune system, but man I'm annoyed with delays here in the US.

Hope everyone is gettin' along and finds those moments of joy all over their days!
Thanks for journeying with me...


Favorite book arrived from Hong Kong

Sunday, September 13, 2015

A Sliver of Me and The Journey

Look! My hair is growing out more! :)
This was a few days ago when I had more stamina...

It has been a little while since I journaled... getting thru the days.
The past four days have been rough and frustrating. I've felt nauseated, low appetite, weak, tired, fatigued, and more... and have gotten thru the days best I can. I think this is all due to being off pain medication. Could be a side effect of Avastin as well... It is disturbing how much this pain medication has masked symptoms. I am tempted to go back on the pain medication but it is frustrating since I have to switch to the US brand which is capsules vs. pills so I can't split them in 1/2. Hmm. Going to try to ride out for a few more days. Shall see.
Last week I met with a new Naturopath Dr. Appreciated the visit with him. He had sensible suggestions. Appreciated getting off some supplements that were redundant/not necessary. So many darn supplements to swallow every day. He increased my intake of a fermented mushroom mycelia extract that helps Avastin work better. He also has me taking Melatonin at night- it is really working. I take Melatonin and then do qigong. I also am taking more curcumin. He calls this the emperor of my anti-cancer herbs. He also recommended three new possible oncologists for me. Will be looking into them soon.
Avastin is due again this Friday. Meh. At least I am getting it done closer to home. Less travel time afterwards.
Visited with my acupuncturist recently as well. Appreciated her insight. Calming. She suggested I start doing qigong at night and that's just what I needed to do... I've been consistently doing qigong every night now which is a relief. I know I want to do more but it is ok for now. I'm also going to my first official class soon. Hooray for that...

Place I went today so my kiddo could do a "Mud Run" with the Cub Scouts... kiddo was thrilled. I found this bit peaceful.
Ok, it has been a month since I participated in The Journey experience. I have not made time to reflect on it beyond thinking about it... yet. So, now is a good time I suppose. 
So, one thing about The Journey is reaching into your past and dealing with issues... addressing conflict, to help you heal in whatever way you need. Help your cells heal from old wounds per se. I found this to be quite intriguing, so I went on the process to address my past. And peeled layer after emotional layer and then addressed all the layers one at a time. Sure, this doesn't resolve my issues overall but I appreciated the process. The journey practitioner took notes as I went thru the hour of the journey with her. Here are most of them:
Dear Debbie,
Here are some notes from your wonderful Journey process:
First the emotions, I addressed each one...

Emotional Layer What Source said to it

Sadness “I trust that I need to be sad sometimes.”
Loneliness “Embrace those lonely days. They are still good days, too.”
Sadness “Don’t suppress it.”
Loss “You still have good memories.”
Fear “There is a way around it.”
Anger at being left alone “Embrace it.”
Feeling unloved “You are loved.”
Loneliness “It is good to be alone.”
Lack of trust “It is not necessary.”
Anger at not being listened to “Not worth it.”
Anger that is like depression “Cool off.”
Doubt “Trust yourself.”
Failure “Not worth feeling the guilt.”

Going thru the journey revealed that my ultimate "happy" moments are with my 5 year old self at my "core" where I feel joy... that was interesting since I can barely remember anything from my childhood...
Happiness, the 5 year old you = your experience of Source

After I addressed emotions I went to my "campfire" to address my 12 year old me- when things seemed to have some tumultous memories... I was asked to call on a mentor to provide words of wisdom to my 12 year old me... so this is what came out of me:

Campfire
Your mentor’s words of wisdom for the younger 12 year old you: “Practice more forgiveness. Let go of anger. Speak up when you are uncomfortable. Learn to use your own voice. Don’t hide your feelings. You don’t need to be passive. You can be strong.”

Your mentor’s words of wisdom for the present you: “Be patient. Be kind to yourself. Trust others more. Appreciate the time you have with people.”

Final words of wisdom from mentor: “Trust your gut.”

I was asked to look towards the future. (I dreaded this because thinking about the future sort of sucks in my opinion most of the time. A fact with me as a cancer patient... I've read the book- The Journey by Brandon Bays and knew everything that was coming through this process) Here's what I thought:

Future Pace

1 day: You feel happy.
1 week: Feeling confident, trusting.
1 month: Issue disappearing.
6 months: Issue lessening. Happy, optimistic.
1 year: Proud of yourself. Issue gone.
5 years: Grateful for every minute I am alive! Confident.

Well.
It was an interesting process.
I'm not sure if I'm sharing too much of myself here but... that's part of my journaling, so be it.

The practitioner had these questions as follow up a few weeks after the process occurred:
1. How do you feel the Journey has affected your life, regarding your intention or issue?
The Journey helped me confirm what I was concerned about addressing and dealing with... it helped me refocus my energy/intention on positive moments and celebrating life.  I'm not necessarily sure how it has helped my issue but I know over the past month I'm sleeping a bit better and am able to walk away from frustrating situations in a smoother fashion.

2. Since we last communicated have you noticed any other, possibly unexpected changes in the way your body functions?
  • Eye sight
  • Eating habits
  • Digestive functions
  • Stamina
  • Energy level
  • Breathing patterns
Digestive functions have become better.
I brought qigong back into my daily routine which has helped my breathing patterns immensely.
I haven't seen as much of a change in my eating habits... 
Eye sight isn't much of an issue besides needing sleep more often than not and my eyes being tired from such.
Energy level had been increasing but I've been dealing with some ailments recently that have lowered my energy quite a bit...
I'm sleeping more/slightly better than I have in ages.

3. Since then have you experienced any physical or emotional symptoms of detoxification or release?
I was a bit more emotional over the past month and allowed myself to experience emotions, to not hold back tears, etc. It was a relief to allow myself to cry and release. It was also good to address other emotions as they hit me. I was much more emotional when I had acupuncture than I had been in the past and appreciated that detox.
 
4. Have you noticed any other changes in your emotional experiences? Perhaps in the way you typically react to challenging situations? Possibly in the way you feel about challenging people, or people close to you?
Not too much. I've always been pretty neutral dealing with challenging situations but I did switch to breathing deeply recently when dealing with some frustrating online issues and reminded myself that over the course of a week what was happening wouldn't be that important. I haven't really challenged people close to me as of yet... I'm simply making sure I'm trying my best to communicate my feelings and what I'm thinking and not letting anything get bottled up.
 
5. Is there anything else you would like to share?
Grateful for the journey. I'm looking forward to trying out The Journey process with a friend in a recipriocal fashion in a few weeks. It is cathartic and helpful for dealing with life... Thank you!

So.
That is my recap of experiencing The Journey.
It was interesting.
Certainly brought up some issues. 

L'Shanah Tova, Happy New Year, to my friends celebrating. I'm approaching this new year with as positive an attitude as I can have and doing my best to celebrate what I'm able to do, not look at what my limits are holding me back from and just enjoying life. 

Thanks as always for journeying with me...