Tough Reality…

It’s Jaimie again… I am going to be brief here and leave out a lot of details, sorry in advance.

As most of you have probably heard, we are headed down a tough road. On September 28th mom was put on Palliative Care, which means they were coming to the house to assist with medications and evaluate her situation. Wednesday the nurse came because she was in a lot of pain, feeling really nauseous, not eating, sleeping around the clock and filling with fluid again. We took her back to the hospital where they admitted her again.

At this point, all they can do for her is manage her pain and relieve her symptoms. This is called “comfort care”, meaning they are not preventing anything, prolonging anything or hasting anything.

She had a very rough Thursday and Friday and lots of family coming to visit because at this point, we just don’t know how long she has.

Saturday we fought with the hospital to get her pain meds up’d and to have her drained because she was so uncomfortable. They finally managed to put her on a drip of her pain meds for a continuous flow instead of a rush every 2 hours and then it wearing off because they couldn’t stay ahead of the pain. At 9pm she finally went in for the procedure to be drained. Sunday, she and my dad decided, it was time come home (on hospice), but not before making it to Jacob’s First Birthday Party. She surprised me and everyone else at the party by showing up, she lasted just a little over an hour for pictures and socialized with everyone. It was the best day for me in a long long time.

As of Sunday, hospice is now managing her care, they brought all the necessary equipment for her while she is home. She has a nurse who visits 3 times a week or more as needed and a doctor who is her attending physician while on hospice. Today, when the doctor came to see her, he told us that she could have one day, or a few or possibly up to a few weeks. Nobody can be certain.

What I will say, is that anyone who knows my mom knows how hard she fought and knows how hard it is to watch her suffer. I just don’t want her to feel one more ounce of pain for even one more minute.

On behalf of my mom and my dad, I want to say thank you for thinking of our family, and praying for healing and comfort for my mom. For those of you who want to “help”, the only thing we could really use at this time is help with meals. It is difficult to care for my mom and manage day to day tasks and remember to plan meals for the kids.

There is a calendar here if you would like to sign up…

To access Diane Gibson’s personal CareCalendar site,
visit http://www.carecalendar.org/logon/152720 and enter
the following information in the appropriate spaces:
CALENDAR ID : 152720
SECURITY CODE : 4055

If you would like to help out in other ways please visit this link:

https://teamdidi.wordpress.com/donate-2/

We love you all!

❤ Jaimie

And The Fight Continues

Since my last update I have had 3 rounds of chemo and with that they have now added another step in this battle. I now take Neupogen shots everyday for 6 days starting on the Saturday after my week of chemo. These daily shots help to regenerate my White Blood Cells and allows my body to not dip in to the low #’s preventing me from treatment. The draw back is that I am in some pretty significant pain for a couple of the days that I am taking them. The pain I experience is a deep bone pain so I take pain meds to help combat that.

As for the new chemo treatments the side effects seem to be sticking around a lot longer than they did after my first round. I have experienced neuropathy in my fingers, toes and in my mouth. Because of this side effect I am unable to eat or drink anything cold with ice or any of my favorites things. I have experienced a very weird taste and food just isn’t the same for me.

I try to push myself to do things as I can, as I get a little depressed when my mind is motivated and my body is not! Seems though that for everyday I do push and might over do I find that I need to have 2 days to recover!! However I want to live in the now and continue to be with the kids and Geoff doing what I am able so when the body says to stop I have to listen and just rest…

I have such a wonderful husband he has been so great in picking up and taking care of the household and the kids. I know that this has also been difficult for him as he is still working fulltime and handling such a huge load! He handles everything but there are times when I just wished I had the energy to be more of a help. I know he misses my cooking and taking care the meals!! Recently a new calendar was setup my Marla Sheik not sure if you have the link but if anyone that lives close to us is willing to help with meals here and there I know he would really appreciate it as would I. Here is the link and the passcodes.

To access Diane Gibson’s personal CareCalendar site,
visit http://www.carecalendar.org/logon/152720 and enter
the following information in the appropriate spaces:

CALENDAR ID : 152720
SECURITY CODE : 4055

I have such a huge support system and you all continue to pray for me and I am so grateful for all that and the love that you show me through the notes, emails and phone calls. It means so much to me!!!!

I continue to have a strong and determined attitude. I will not give into this cancer or into this fight!!!!!

Until next time…

❤ Diane

Update 5.30.13

I again want to apologize to you for not posting anything since the beginning of May!

After my treatment on May 1, the next week I was due to have another round however  I was not able to since my white cell count was really low. Being low means they aren’t able to continue until they come up.  My doctor decided to postpone for one week and see what my counts were then. Unfortunately, that next week it wasn’t the white blood cells but my platelets that were extremely low and if they dropped much lower than I would need to have a transfusion. So again he postponed my treatment.  On May 17th I had a CT scan and anxiously awaited the results.

Geoff and I received the call on Tuesday evening from my Dr. He had been waiting to get all of the data together and reviewed with Dr. Yuan from City of Hope. She was the doctor we saw for our 2 opinion. She still is not convinced that where my cancer started was in the breast. She and her team are still thinking that is has something to do with my GI tract. The news that we were given was not exactly what I was hoping for however it really wasn’t that bad!   The Cancer has not spread,(PRAISE GOD) although there has been some growth of the tumors on the liver but minutely. Doctor didn’t seem to concerned about that he was however concerned with the fact that my blood counts are not bouncing back quickly which is delaying my treatment!  The doctors decided that what course I was on wasn’t really working even with missing 2 different treatments. They have decided to put me on a whole new regiment this consists of going every other week I had my first treatment last Wednesday and was there for approximately 4hrs and received 2 different medications that have to be given together over 2 1/2 hrs. Then I have given a boost of another medication over a 10 minute period, once that was complete then I was sent home with a pump of the same medication to be administered over 46hrs. This treatment plan has a name it is called FOLFOX. This is known to be a treatment used for Colon Cancer.  Doctor said to me that it is a more aggressive treatment and it works on all Cancer’s in that region.

With this new regimen comes new side effects. I am not allowed to have anything cold to eat or drink in the first 5 days after treatment as this can cause my esophagus to close and have breathing issues. Neuropathy is another side effect and its pretty intense! I experienced that the first night! Touching anything that is cold or frozen sends a feeling of tingling or electricity through my hands. I have been told that I really need to wear gloves when reaching into for anything out of the fridge. That’s a hard one to get use too. Then there are the effects that I had before loss of hair, being tired and lack of energy. It literally took from Wed to Monday to finally feel like I was able to get up and around. I pray and hope that this treatment plan works. I noticed that I am still experiencing a few pains here and there and that is different than the last regimen. Once I had treatment that pains would go away. I meet with my Dr again before the 3rd round and will discuss all the questions I am sure to have by then!!!

After this first round and seeing it take me down for almost 5 days Geoff and I would like to ask for help again with meals if anyone would like to help us again. This is just one area that is such a HUGE help to our family as I was the primary cook.

I will do my best to try an update this more regularly!!

With love,

Until next time…

Diane

Chemotherapy Port Surgery & 3rd Chemo Appointment

Tuesday mom had her port surgery. It was a long day.

It was rough, she went from not being hungry because of this disease and chemotherapy making everything sound gross or taste disgusting  to starving because she had to fast for her surgery.

Surgery was scheduled at 3:30pm and she was home by 7:00pm. Had a hard time sleeping after the meds wore off and she has to get used to having the port and finding a comfortable way to sleep.

This is what her port looks like… Swelling should go down hopefully soon!! Her neck is tense and She’s sore but Dr says it went well!!

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ImplantablePort_2011

She had Chemo on Wednesday. This was her 1st round of her 2nd cycle. She did well, rested most of the day and then went to Aaron’s baseball game for a little bit. Overall she’s feeling pretty good, all things considered.

Today she has been down most of the day, trying to rest and keep her pain and discomfort at a minimum.

We love you all! Thank you so much for your words of encouragement and support in every way possible!

Until next time…

❤ Jaimie

 

One Round Down… Six more to go….

Although I couldn’t attend the fundraiser at Flamingo’s I want to personally thank each and every person who dined there in support of me. I can feel the love and prayers from all of you. I also want to extend a huge thank you from the bottom of my heart to Lynette Brinkis for organizing these events and to Flamingo’s for coming together as part of this amazing community!! I will do my best to attend the benefit on April 13th and I hope all of you can too!!

As for my treatment…July seems so far away….

I feel very blessed to not have had any real side effects yet. The only thing I can attribute to chemo so far would be lack of energy and fatigue. I try everyday to get up and at least shower and stay out of bed for as long as possible.

This week, on Monday I met with my oncologist. He went over my PET scan results and discussed what we basically already knew. I have stage 4 breast cancer which has metastasized into my liver. His goal is to put me into remission so that I can continue to lead a full and normal life, while maintaining chemotherapy.

My chemotherapy happens for two consecutive weeks and then I have an off week. This happens to be my off week and I can definitely feel that my counts have dropped.

Next week I will be having my port placed on my left shoulder on Tuesday and then my next round starts Wednesday. I have heard that as I continue I may begin to feel more side effects. I am praying they aren’t too bad.

I also want everyone to know how incredible it feels to be part of a community that comes together when a family is in need. Thank you to everyone who has signed up on the calendar to bring meals and assist wherever needed and have been here since this all began.

I love you all!!

Until next time…

❤ Diane

 

 

The road begins… After Chemo & finally a PET Scan

I’m sure you’ve all been very anxious to hear what’s been going on the past few days.

The MRI results showed that I do in fact have breast cancer! There is no mass in either side, the cancer was thought to be there at one time and has moved to a right lymph node under my breast about 2 inches away from my liver.

Wednesday I began chemotherapy. Which didn’t seem to be too bad. I have not had any side effects until yesterday.

Yesterday I had to fast because I had my PET scan. Lack of substance in my system and only being able to drink water, may have contributed to my nausea. It was an incredibly long day waiting to get the scan. My appointment wasn’t until 12:45pm and I wasn’t seen until 2:15pm because I had to drink the contrast and wait.

The oncologist originally told me that my PET scan results wouldn’t be back until Monday or Tuesday. Around 6pm I received a phone call from him, informing me that he already had the results!

I am happy to report that my cancer has not spread anywhere except one lymph node and throughout my liver. I have officially been diagnosed with Stage 4 Breast Cancer of the Liver. My chemo will run for 6 rounds (2 weeks on 1 week off is one round).

With this news, even though I have a treatment plan in place, Im still going to get a second opinion.

Although no cancer is a good cancer, breast cancer is more commonly treated and has a higher rate of response to chemotherapy. I am very optimistic about the future and I plan to kick cancers ass!

Thank you all for your continued support, love and prayers!!

Until next time…

❤ Diane

the emotional roller-coaster continues…

Wow! What a whirlwind we have been through in the last 36 hours!

After a 2 hour appointment yesterday, I was still left with uncertainty. The pathology reports had still not been interpreted. (The top regional pathologist was out of town this week and just returned yesterday to review my medical records) We were told we should have a definitive answer back by the end of the day.

The oncologist was 95% sure this was Cholangio carcinoma- Bile Duct Cancer, which had spread to my liver. There was still a 5% CHANCE this could be an infection but I would be violently ill if it were.

Cholangio carcinoma is a rare type of cancer found in the liver bile ducts and could be caused by my underlying medical condition (Ulcerative colitis, which I have had for almost 10 years.) Typical cases of this cancer are found in older people, in other countries and other ethnicities so I was not a prime candidate. I was devastated to hear that this cancer is not curable, only 2 in 100,000 people get it, radiation was not an option, it is a fast progressing and aggressive cancer and chemotherapy only had a 25% chance of slowing this cancer down.

Because this cancer had already spread to my liver, there wasn’t really talk of a liver transplant because the bile ducts cannot be removed or replaced and the cancer would just infect a new liver, along with the possibility of my body rejecting it.

The next step is a PET scan (Positron emission tomography is a nuclear medical imaging technique that produces a three-dimensional image or picture of functional processes in the body.) and next week to start chemotherapy (no matter what kind of cancer this is)!

I came home with a number to call to coordinate all the following appointments. Kaiser, being the lovely medical group they are, cannot get me in for a PET scan until March 22nd within 100 mile radius. That may not seem like a long time to someone who wasn’t just diagnosed with incurable cancer. So we called around to try to seek out other medical facilities for a PET scan and a second opinion. We hit a few road blocks with insurance and money being an issue and time against us.

Around 5pm last night, the oncologist called me to tell me that the pathology reports were back!  The results showed that I have “Carcinoma of the unknown primary”. Which means I do not have PRIMARY liver cancer (as we thought from my hospital stay last week) He was still unsure if it was Cholangio carcinoma. What he did know is that I have some type of SECONDARY liver cancer that originated from somewhere else in my body and my elevated breast cancer markers indicated the oncologist to believe that despite my clear mammograms and physical breast exams, this is likely breast cancer.

Yesterday was beyond exhausting…

This morning started with a phone call back to the coordinator to find out if she had found any sooner appointments for the PET scan. By 2pm she still hadn’t called me back.

I finally received a call telling me that she had exhausted all her options for locations within 100 mile radius for anything sooner than the 22nd.

I then received a phone call from my GI doctor, who has been following me since I was in the hospital and working with the oncologist. She indicated to me that after reviews some more results that she feels I am truly dealing with breast cancer. I am awaiting two more tests that will give us a final confirmation as well as getting an MRI. They have together decided, with my agreement, to proceed with chemotherapy next week to treat me.

I am anxious to get a final, official diagnosis and to start my road to wellness. I am not going down without a fight!

Bottom line:  Kaiser thinks that I have BREAST CANCER that has metastasized into my liver. Which is way better news than I received yesterday.

Until next time…

❤ Diane

 

Overwhelmed…

I am so blessed beyond words to be surrounded by such amazing, supportive, loving people. I cannot express how full my heart is from all the out pour that has been shown to me through message, texts, FB posts, phone calls and voice mails  Even a few unexpected visitors and flower deliveries. Each and every one of you have made me smile!

Today was the first day I left the house since I was released from the hospital on Wednesday. I went to Aaron’s baseball game. It was nice to get up and go out to some fresh air and do what I love to do, watch my son do what he’s great at!

I came home exhausted, but to a few pleasant unexpected visits from Jen, Stephanie and Anthony.

My dear friend Jillian will be leaving in the morning to go home but I am so thankful that she came to be with me during this difficult time!

I am experiencing some consistent but dull pain and discomfort. Still continuing to have no appetite and feeling very very tired with no energy for anything.

Until next time….

❤ Diane

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Diane’s Helping Hands

We have created a website community using Lotsahelpinghands.com. Here you can sign up to assist with tasks the family needs help with such as meals, rides to and from school or extra curricular activities for the kids, shopping/errands, etc.

If you would like to volunteer click here: https://mycancercircle.lotsahelpinghands.com/c/702169/

Use the ‘Join this Community’ link to fill out the form which is a Request to Join the Community. Once you’ve done this, you will be approved and will be automatically notified and provided instructions for signing in to the Community.

We thank you in advance for helping Diane and her family in this time of need!

 

The battle begins…

Here is what we DO know:

I had gone into the doctor on Friday (3/1) because I was having some discomfort in my right upper abdomen along with some unexplained nausea, fever and sweats and loss of appetite. I scheduled an appointment with the doctor for what I thought was a gallbladder issue and had an ultrasound of my abdomen. The doctors didn’t see anything with my gallbladder, however they found that my liver is enlarged and has several “spots” on it.

I was sent to the ER room for an urgent CT scan and later admitted to the hospital.

It seems like I had every test under the sun; CT scans of my chest and my brain, an EKG, a mammogram, a liver biopsy, colonoscopy, endoscopy, and several blood panels.

Tuesday the preliminary biopsy results came back.

As some of you may or may not have heard, I was diagnosed with Stage 4 Liver Cancer on Tuesday March 5th.

Here is what we DONT know:

  • We don’t know exactly what type of cancer this is, other than the fact that it’s in my liver.
  • We don’t know where it came from or if it originated somewhere else (it’s not breast cancer and it’s not colon cancer for sure)
  • We don’t have any treatment options or plans and we don’t know the prognosis.

Tuesday March 12th I will meet with an Oncologist and get all the answers to so many questions. Right now, this is a waiting game. If I could talk to every single person that loves me and is concerned about me, I would. I am so consumed and overwhelmed with this news. I wish I could answer every phone call or message or Facebook post, but please know that I am still processing all the information and I don’t have all the answers to the questions that everyone has, including me!

Until next time…

❤ Diane