Tuesday 2/4 Update
Hospice has been a blessing. They have provided Denise with pain relief, something that has been elusive for several months.
With the pain relief she has been experiencing severe tiredness, sleeping for long periods of time and occasionally having some confusion and disorientation. With the help of hospice we have been trying to adjust the medicine to decrease the sleepiness while still keeping the pain relief.
The main medicine that is helping with the pain relief is being gradually increased. Unfortunately every time it is increased it causes several days of sleepiness as the body adjusts to it.
We've received feedback that many are having problems with accessing or posting to the blog so we've created a new Facebook page. The Facebook group is Denise's Journey. If you do not use Facebook, we are asking that you e-mail your stories and pictures to Adam Holbrook and he will post them for you. Email Adam Here
We are encouraging people to post pictures and experiences (not just pictures), stories or memories spent with Denise on a new Facebook page. Denise can read and reflect on these wonderful memories during her quiet times.
Once you get to the Facebook page, request to be a member. As we check our e-mail and confirm your request you will be able to post photos and stories.
Saturday, February 1, 2014
Some posts did not make it here to the blog so this is an update to that as well as some new news.
Denise came home from the hospital on the 26th. It was a bit of an ordeal getting home.
Since then pain has been the biggest issue.
On the 30th another CT scan showed the cancer has progressed. Due to the surgery the options are limited, at least for the next few weeks.
As a result of the pain and the results of the CT scan and currently limited options, Denise has decided to start pain management with hospice, with the hopes that the pain can be better managed.
We continue to have hope that once she has healed from the surgery other options will be available and hospice will be discontinued.
As we go forward at this point we are encouraging visits. Our biggest concern is with Denise needing extensive rest and becoming too tired with visits. The most common question we get is "when should I come?" Unfortunately this is not a question we can answer completely. Usually, 11 is the earliest for visiting. Sometimes pain causes changes that we cannot control and visits may need to be cancelled/changed. As most of you know, Denise will not want to disappoint anybody, so we know you will understand if this happens.
If you would like to visit, we encourage you to e-mail firstname.lastname@example.org when you are thinking of coming. Please also include a number where we can call/text in case we need to contact you to make a change. Please check your messages/e-mail prior to coming. Also be aware that you might get an e-mail from someone else as we try to keep anybody from getting overwhelmed by all the details that are needing to be taken care of at this time. Please make the e-mail subject "Visit with Denise"
We continue to pray for health and healing and have added a great deal of prayer for pain relief.
Thank you all for your support and love.
(compiled with help from family and friends)
Wednesday, January 22, 2014
Wednesday, January 22
We had a few tiring and rough days. Denise continues to move forward physically; catherer and surgical site drain removed and antibiotics stopped. She's walking lots but the ultimate goal of passing gas has not happened (Sorry if this is too much information!). She's now on a full liquid diet with supplementalintravenous TPN (amino acids, protein, dextrose, etc.) and have a few bowel movements. The plan is to remove the TPN tonight and give her supplemental liquid food. Her pain meds are being adjustedintravenously and available by mouth as needed. Last night she was able to sleep a little better.was a day forward and today a rough day so it seems one day forward and one back.
In the midst of her recovery she tries to embrace the emotions around having cancer and her life. Sleep deprivation has accerbated this too.
The doctors and nurses here at Kaiser Modesto has been exceptional and we are very appreciative of their dedication and skill.
Chemo therapy to treat the remaining cancer will start once her surgical site is healed (?3-6 weeks?).
The doctors are discussing possible discharge later this week. We know there are many of you who would like to visit Denise. As soon as she has regained her strength and is able, we will let you know.
Your supportive and loving energy means so much to all of us and of course, especially Denise.
We intended to send an update a few days ago but we've had trouble with the internet access in the hospital.
hugs n luv, Joan/Denise
Thursday, January 16, 2014
Crucial time is here. Denise is going into surgery this afternoon--no definite time yet--possibly 2:00 or after.
Please encircle Denise in healing energy and prayers. We are an important element in her journey!
There is no need to share the surgical possibilities as it's quite indept and the decision will be the surgeons. Let's send Dr. Villasenor lots of support too. The surgery is only a piece of the big picture but the highest priority for life sustaining at this time.
A special note to Sandy--do your work!
Sorry this is so brief but lots of things going through our minds right now.
Luv and hugs, Joan
Tuesday, January 14, 2014
A little history of the latest happenings in Denise's journey with cancer--
Thursday and Friday she was experience a lot of pain and vomiting. When she went to her chemo appointment Friday afternoon she was instructed to go to ER for evaluation of a possible bowel obstruction.
In the proceeding hours she had a CT scan which showed a small bowel obstruction and another mass in her lower colon. The two of these had blocked flow to the Right kidney so it was no longer functioning.
At 11 pm Friday a stint was surgically inserted in the ureter to allow the kidney to drain. An NG tube was inserted during the stint procedure, while Denise was under anesthesia to alleviate the pressure in the GI tract. She was then transferred to Modesto Hospital at 1am immediately post-recovery. In the last several hours she had her "labs" drawn which fortunately are normal and blood sugar is normal. The doctor reported this morning that the stent seems to be helping and Denise's back pain has minimized.
To address the colon mass Denise is scheduled to have a colonoscopy at 1:00 today to determine if this is a new cancer. She will also have a consultation with general surgery to discuss options for the bowel obstruction.
Denise asked me to send this because she feels it was the energy from all of you that cleared the bowel obstruction in March of last year when she was last admitted to this hopsital.
Denise is asking all of you to again send healing energy to clear the blockage and cure the cancer in her body.
Your loving support and offers of help are so appreciated. Be assured as our family needs resources we will contact you.
Love to all of you, Joan, Denise's Mom
It is hospital day #4. We are waiting for the pathology report from the colonoscopy to determine the next steps in treatment.
Yesterday, Denise woke up with significant dizziness, almost as if she had vertigo. Denise figured it could be the antibiotics since she hadn’t taken antibiotics in years. Considering, only one physician felt the colon mass could be an infectious process, Denise asked that the antibiotics be stopped. The dizziness quickly resolved. She figured they could always be re-started if pathology showed an infection. She is still experiencing some nausea and the pain is moderately controlled.
We just returned from a short walk down the hallway. Unfortunately, she remains NPO status, meaning nothing to eat or drink. The only thing she can have is a little water to take one of the pain medications.
We have been vigilantly by her side keeping watch. We will keep you posted as things develop. Know that we all truly appreciate all your support.
In healing and love, Joan
Friday, December 27, 2013
I hope you were able to spend the holidays with your loved ones in joy and happiness. Fortunately, by afternoon on Christmas, I was able to get out of bed and enjoy time with my family. I am so appreciative of my family’s support and flexibility around these holidays. It’s been rough on everyone and the stress and emotional toll has been felt by all. It’s been awhile since I’ve been able to give you an update and wanted to get one out soon, despite this being short and to the point.
Unfortunately, things have been a challenge. The pain continues to be quite intense. I find relief by seeing my Acupuncturist and sitting in our hot tub, along with using several pain medications. Most of the time you can find me surrounded by an assortment of hot packs also. My bowels are still very sensitive and I am eating little. Ironically, I have found organic cottage cheese to be a friend. The nausea/vomiting has been sporadic so it’s been very difficult to keep up with my fluid intake. Plus you have to be awake to consume liquids and I spend the majority of my days sleeping. My kidney function is now showing some signs of the effects from the dehydration.
I’ve had two rounds of chemo, both with a medication called Gemzar (Gemcitabine). This is one of the chemo medications I had during my second treatment of chemo last spring. At that time it was very effective, in combination with another medication, to clear the cancer quickly. Of course, the cancer unfortunately also returned quickly. With my most recent blood work this week, the Gemzar has been deemed ineffective this time. After two rounds, the cancer tumor marker has continued to increase another 100 or so points. I’m scheduled to have chemo again tomorrow with the plan to change to another agent called Topotecan. The goal will be to have weekly treatments of the Topotecan. I’m anxious to feel relief of all the pain soon, but still feel uneasy about “needing” chemo.
I muster up enough energy at least once a day to work on “me” in the mind/spirit realms of treatment. I love using Byron Katie’s The Work to challenge all of my beliefs. For example…it would have been natural for me to develop fear and feel hopeless with the chemo not having the “hoped for effects” so far. BUT, in using her work I am reminded that just because one method did not work, does NOT mean that I’m following the path of most women with ovarian cancer where all available chemo agents are exhausted without suppressing the growth of the cancer. I cannot know, beyond a doubt, what will happen to me. Regardless of what has happened to many others, regardless of how many treatments are needed or not. I am reminded to stay present in the NOW. To stay aware and in gratitude of what my reality is in this moment and just how many things are working effectively. I’m not saying this easy, but it’s been the best thing for me to keep from feeling completely hopeless.
I thank all of you for your continued support and thoughts of well being for me.
In love and gratitude,