Recovery and transition

The liver surgery was a success! Dr. Gogel is confident that he was able to do enough ablation therapy to get clean margins around the (about) 4 cm Timothy was there.

I did spend more than one night in the hospital. I was actually there until Tuesday rather than going home the preceding Saturday. Why the delay? Pain control. With the pain medication I was taking before surgery because of my back pain it was difficult to provide high enough doses of medicine to knock out the surgical pain. What a challenge! 

In fact, Dr G sent me home with presciptions that had me taking a lower dose of medicine after surgery than before. Needless to say, I had to create a pain management plan based on pre-surgery doses and post surgery expectations. 

It was frustrating as I felt guilty for being on the medicine that my doctors had prescribed and that I needed to control the pain. 

This guilt pushed me to step down my pain medicine so I could get to the dosing expectations of my surgeon. 

It ended up leading to a slew of problems so dramatic we had to make some dramatic changes in life including admitting I couldn't manage the taxing responsibilities of a single parent alone any more. And, from the maternal instinct to protect my children, we have chosen to live with my parents for right now. I could just see the stress of worrying about Mom and my health plus fearfully waiting for the next medical challenge to hit. I also had children who deserved to join in extra curricular activities being stifled because I didn't know from day to day if I would be well enough to drive them from activities home. Although we had wonderful friends willing to help, after a lot of tearful prayers the answer came that we needed full-time help to keep our family functioning as I want it to function and to teach the girls how a loving home should function. I also need help to continue to teach them homemaking skills and to allow them to develop their talents and to excel in the goals they have set. 

No one tells you how hard parenting will be - all the worry about if you are doing right and giving what they need for growing and success in life. 

I am humbled and grateful for family who used their vacation time to come to Texas and care for me when I was so sick. What a beautiful and Christlike charity to think of your extended family members needs and to be an answer to prayer. 

I am humbled by so much service - cleaning and preparing my home to be vacant for an extended time, new car tires, vacation time and plane tickets many purchased in order to make the process as easy on my body as possible. So many generously gave their time and financed travel to help me. There is no end to the goodness my church family also offered. And, how beautiful and humbling to be invited to bring my family into so many others home so I could have the needed support while I go through a season of physical and emotional weakness. 

I look forward to the day I am strong again so I can become the one offering the service, support and opening my home to those in need. 

I love my Savior, Jesus Christ, for his atoning sacrifice that all my burdens can be laid at His feet and I don't have to carry them. 

Ablation Surgery for Liver Tumor

Today is the day, finally getting surgery on my liver.  I know it sounds weird to be excited about it, but I am in the sense that I have a lot of hope for how I will feel after the surgery and recovery.
Recently we have been completely focused on the mets in my spine and liver.  I have been told these are two parts of the body that chemo has a more difficult time treating. That makes sense as the spine is encased and protected from things crossing that barrier to protect the brain, you may remember from health science that the spinal column and fluid are directly linked to the base of your skull.  And, the liver is cleaning out the junk from your body, and chemo is junk - so it probably doesn't get a chance to do it's work there because the liver wants to sweep it up and get it out.
Getting this surgery leaves me with hope that we will have gained some control over two spots that were growing out of control and could have become very threatening to my health. I also feel nervous about tumors in my liver.  That sounds like something that happens when someone doesn't have much left to win in the battle.  By getting these areas under control I feel better positioned for a miracle - being cured of this nasty cancer.  And, if God isn't ready to do that, I am hoping to treat one of the major causes of the complete physical exhaustion I have felt for months. I have been on disability from work since October, but can't get to where I feel like I have been on break and resting.  I am just completely worn down. Something as simple as standing near the chair and watching my daughters get their braces adjusted completely took the strength to finish the doctors appointments we had yesterday.  When was the last time you got tired from standing up for 10 minutes? 
Today I have been awake for hours, just nervous jitters before a big day.  And, in addition to laundry, perusing medical bills, and cleaning the bathroom floor I have been searching the internet for things like "does the liver have nerves/ feel pain", "recover/liver ablation", "blog about liver ablation", or any thing written by a patient about this treatment. I haven't had much luck. (frowny face)  So, I only know what the doctors say - that recovery is about 2-4 weeks.
And, so I will march forward, praying for my children to have the strength to endure mom's problems a little longer.  And, I will be putting my faith in the Lord and hoping this treatment will be a huge advantage in the treatment of my cancer and in regaining some of my strength and stamina.
 

Numbing pain, hospital stay

I am so blessed by the actions and service of others. There are too many services for me to list, but a lot of people have joined a circle of select friends after spending hours holding my hand while I cried, had snot drip down my nose and me using my shirt as tissue, walking behind me when I wore a hospital gown (lol), etc. 

I am doing better. I am in the hospital, have been since last Thursday. I have been in extreme pain for many days and had that same level of pain most of the time for the last month.  

Today results from my PET/CT scan came back. I have been praying my results would direct my doctors down a clear treatment path. As Dr Beshay discussed them with me he said they were very clear. He said my complaints, the EMG and this test all pointed to the spine, specifically L3/4. 

The plan:

1)  get me out of the hospital and home

2)  do Cyberknife Radiation. This is a more exact form of radiation so a much higher dose can be used. 

-- I also talked to Dr J today. There is some more activity in the liver, so following my spine we will have the surgery to address that problem. And we will resume chemo after these two treatments are complete--

3) Surgery on the liver to stop the cancer there

4)  resume chemo

Prayers are still needed. Please pray that (#1) I will be clear in explaining my pain to the doctors so I can get a pain management to use at home that will be successful. (#2) the doctors will continue to be inspired in their treatment plans for me (#3) my continued optimism and faith that I will one day be healed completely. 

Thanks for all your love. 

Huge update

It has been about a month since my last update, and it has been very busy on the cancer front. 

I got some radiation on my right hip where the MRI showed tumor in the bone marrow. The relief wasn't like last time, last time it was almost instant, it made a difference within days and lasted for months. This time the pain didn't go away quickly and it was probably the pain killers and steroids that controlled out for the days when I didn't have pain.

However, I am going to take this as a good sign about the tumor. I am going to believe that this particular tumor isn't in too bad of shape since radiation didn't solve the pain. So the tumor wasn't causing pain. I may be unscientific and not sound reasoning, but I don't have to think in solid arguments all of the time.

I am so blessed to be able to take short term disability from work. I couldn't imagine how I could have been a good or equitable employee right now. I surely have days when I feel guilty for being away from the office, but it isn't long before God reminds me that there is no way for me to do more right now. I am learning a lot about accepting physical limitations and He is the teacher. 

All of this leg pain has reawakening my fear of losing the use of my legs at some time. I have no reason for this fear, but it is real just the same, so I slowly work through what that would mean in my life. If I were to be paralyzed what would I have to do? What would I have to change? How would I cope? How would I continue to be me? As I think through this I am more prepared for this or another challenge I may face. 

I got a little reprieve and rest; I spent Thanksgiving with family. It gave me a couple of weeks of parents and siblings helping with the children and helping me too. It ended up being physically challenging. 

A few days into the trip I was in the ER with my leg. They ran a fresh MRI and verified again the the tumors in my spine aren't the likely cause of the pain. The best guess is that it is nerve damage. I can't see the spine surgeon until next week. His scheduler squeezed me in between two surgeries to make it happen. I am willing to do about any treatment to fix the problem and get my legs back!!

Send up any prayers on my behalf and that the doctor will be inspired to choose a treatment that will cure this problem. 

What it is like to take Navelbine (Vinorelbine)

I have been getting a lot of treatment lately.  As mentioned in my last post the Kadcyla chemo failed quickly, meaning that tumors continued to grow inspite of receiving the chemo, and I have had to move forward to a new chemo.  We selected Navelbine along with herceptin.

Of course, you can read up on Navelbine on sites like this one. And, you will read about common chemo side effects; hair loss, joint pain, constipation (being on chemo means you will forever be either constipated or have diarrhea), neuropathy (numbness in fingers and toes) and low blood counts.

Navelbine is a tough-ish chemo.  I have only had one cycle of treatment, but this chemo isn't one that you just forget when the treatment is over.  It left me very tired and suffering intensely with digestive issues.  The digestive issues were among the worst I have ever had and I tried a lot of remedies.

For those of you reading this because you are facing the same troubles here are things that ended up helping me: Natural calm which can be found at Sprouts or Whole Foods, magnisium citrate was helpful for a few hours at a time and can be found at Walgreens or any drug store - it is very inexpensive and has been very helpful in the past but wasn't the best help this time, and fennel seeds for bloating and pain.  The other thing it took was TIME - just time for my body to work through it, and that was aweful. Remedies that worked in the past (stool softeners, warm tea, a heating pad on my stomach while resting and beet juice) provided little relief, so I will need to be better prepared for the next treatment.  I have to be better hydrated and will stocked on fiber in my diet in the days before treatment. 

Another side effect was a lack of appetite, but that could be the chemo or the digestive issues.  Again, I will just have to see if I can provide preventive treatment this time.  My Onc Nurse mentioned that other patients have experienced more nausea after the second or third treatment, but the anti-nausea meds were adequate to control it so I will have those in hand when I go to treatment.

My plan to prepare for the next treatment is to focus on my hydration and nutrients more that I have in the past few weeks.  It's amazing that radiation, a treatment with few physical marks causes such total exhaustion. It really knocks you out.  Because of this I have just been getting to and from appointments lately (oh, and getting the house painted and carpets cleaned, and the fridge repaired, but I didn't do it myself).  The next few days will be filled with juicing and water. I will also spend time in meditation and positive reinforcement with mantras and journaling - as my brother would say - my hippie stuff.

Additionally, I am preparing for surgery, so I should focus on getting extra protein to build up my body to heal itself.  I am going to have ablation treatment on my liver.  This will be a less invasive surgery requiring only one night in the hospital and a week or so to get back on my feet.  I feel hopeful about this surgery and the success we will have.  The surgeon explained to me that the chemo drugs used for breast cancer are less effective on the liver.  It's all chemistry.  I don't understand it at a micro level, but I understand the concept that some chemical compounds are going to cross over to some cell types better than others, like bone over liver. 

So, I keep doing what I have done for years.  I pray that the Lord will direct me to doctors who are competent.  I pray for my doctors and their staff to be inspired by the best options for me.  And, I pray to know when to trust them and when to let me research push me to ask more questions so I either understand better or so we select a treatment that feels right. 

My approach in coping with and treating my cancer has grown in scope over the years.  My first defense has always been in trusting God that He is in control.  I have not always been as faithful in this as I want, but it is what I believe in and it is my foundation.  Secondly, I find a medical team that I trust and feel good about.  I also need to know things, so I research and education.  I try to use a combination of "scientific" base websites from hospitals and cancer.org as well as reading blogs to see what other patients are experiencing.  And, I take it in knowing that every cancer patient is different and so are their reactions.  I have also found a lot of success with adding holistic and homepathic treatments to my traditional/western medicine. You have to use caution and be in complete communication with your whole medical team about any of the treatments you are considering.  Some treatments, while naturally occurring in nature, are not a good mix with some drugs.  Think on grapefruit juice, many types of medications are not effective when you also drink grapefruit juice.  Also, antioxidants, when overly abundant while receiving chemo can actually have a negative impact on the effectiveness of chemo.  I don't want to minimize the effectiveness of one treatment by adding another that cancels it out. I believe emotional health is a vital tool in strengthening physical health. 

The body and spirit are connected - that is what gives us life.  Learning to have our body work in harmony with our spirit is vital.  This is why I think yoga, meditation, spiritual worship and other activities are often habits of people who are successfully managing their chronic or terminal illnesses.  So, I try to be kind to myself (this can be really hard) and I try to live a Christ centered life practicing love, forgiveness and charity in everything I do. I am the recepient of more charity and giving than I could ever hope to give back - I am overwhelmed by the many offers of help with meals, housekeeping, child taxi services and more that continue to be given to me.  I want so much to be giving, but have spent years receiving the help from others. All this help comes with such love and care it is a healing force in my life. Many times the love that has accompanied the service has been more powerful in healing and strengthening me than the gifts, meals etc. have been.  After all, isn't service just a mode of delivering love?

Sending my love and hope for your journey--
Kel