Monday, January 18, 2016

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. 


Thursday, December 3, 2015

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. 

Tuesday, October 27, 2015

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


Monday, October 12, 2015

New chemo + radiation + exhaustion

The quarterly scans I last had showed new lesions in the left leg and continued spots on the liver. More horrible right hip pain led to MRIs that showed lesions in the marrow of the right hip. So, Kadcyla has been added to the list of failed chemo treatments. I am pretty unhappy about that since it was an easy chemo to tolerate. 
I am back in radiation for the right hip. It's an emotional struggle to face. 
I also started a new chemo, navelbine. It isn't too horrible, it has caused a lot of stomach issues and I am completely tired all the time. Wait... I guess that is pretty bad. But, it could always be worse. 
I am struggling to do the things that life requires; kids, work, cleaning. So, we will just keep faking it for a while. 

Thursday, July 9, 2015

My experience with Kadcyla (TMD-1)

Kadcyla is a targeted cancer treatment being used in patients like me who have metastatic breast cancer that has progressed using taxane based chemotherapy.  

Common side effects of Kadcyla include 
  • fatigue
  • tiredness
  • nausea
  • musculoskeletal pain
  • headache
  • constipation
  • low platelet count
  • liver problems
  • low levels of red blood cells
  • nerve problems
  • low levels of potassium in the blood
But, if there is something I have learned about cancer treatment, there really aren’t common side effects.  I have frequently experienced the opposite effect of many drugs.  The truth is making notes about my side effects helps me compare what is happening from one treatment to the next so I can determine which responses are likely side effects from the drug and what may be the result of something besides cancer treatment.  I find this helpful in using meditation to manage some side effects and proactively taking medication for others.

Today was my second round of Kadcyla.  I am on a 21 day cycle - I get an infusion on day one and then 20 days of the drug doing magic inside my body.  Then we start at day 1 again - and that is what makes it a 21 day cycle.

Side effects I have had with Kadcyla
The first side effect is absolutely an emotional response.  As the nurse hangs the pre-med and chemo bags on the IV pole I start to feel a headache coming on in anticipation of the real headache that the drugs give me.  Recognizing this false side effect leaves me taking a deep breath recognizing that I don’t have a real headache and focusing on something else like Facebook, Pinterest or TV.  

About 2 hours into treatment the skin around the IV needle that goes directly into the port in my chest gets itchy.  I am not sure if it is the drugs or the tape.  I notice the itching, but it isn't anything that affects me more than this recognition.  But, when itch starts I always look at the site to be sure there is no redness or indication of a reaction to the medicine.  But, so far I haven’t had that very often. When I do have a reaction, stopping the treatment, getting an extra dose of Benadryl and resuming treatment at a slower pace has worked.

The side effects I do have from this drug are listed below with an explanation of severity and how I manage the side effects.
  1. The feeling I need a nap:  these hits after getting the pre-medication cocktail.  The pre-medication cocktail includes Benadryl to prevent an allergic reaction to the chemo and anti-nausea medication for the obvious reasons.  How I manage: sometimes I take a nap and sometimes I don’t.  If you are a patient getting chemo and you feel the need to nap I encourage you to do it – rest is one of the best medicines.
  2. Headache: I usually get a headache after getting chemo and Kadcyla is no different.  The best treatments for this include: hydration to be sure there isn’t any dehydration contributing to the pain, a brisk walk to push extra oxygen into my body, plain old pain killers to knock out the pain so the side effect doesn’t spiral into something worse, and when it is worse I have medication to treat migraine headaches.
  3. Exhaustion: this isn’t just the need to nap but the inability to focus on anything and feeling like I can barely sit up.  It’s complicated by the feeling that I can’t walk from the living room to my bedroom to get into bed or the feeling that once I get into bed I won’t have the strength to pull the blankets up.  Oh, that sounds so dramatic!  But, that is how “tired” feels when you are going through cancer.  I am not going for a dramatic scene because a cancer patient is usually too tired to care about drama and attention. ~That is how I am anyway.  The best treatments for this include: if I can possibly push past mild or moderate tiredness to act and live normally I do it!  Last time I got Kadcyla I was asleep most of the time for 4+ days.  It is always the worst on the first treatment when my body is shocked by the new drugs along with the emotional workout of starting something new.  The best treatments for me include: resting – when you can’t stay awake any longer then go to sleep, eating healthy protein and some produce – if your body needs the nutrients and you choose good food you can practically feel life coming back into your system, hydration – again just be sure there isn’t any dehydration contributing to the tiredness.
  4. Potty problems: This is so personal and probably not something friends want to read – so just skip this one!  For other cancer patients who may be suffering with diarrhea or constipation you are probably DESPERATE for help.  I know how that desperation feels so I am going to tell you some secrets.  The best treatments for this include: the first secret is a good doctor or nurse will ask about your bowel movements.  There isn’t a drug used to treat cancer that doesn’t cause either diarrhea or constipation – welcome to your new life.  Second, treat this symptom – don’t just endure it.  I have tried to endure and it really messes up life more because you feel rotten and don’t want to leave the house.  When you leave the house you are at risk of getting stuck in a public restroom with a real issue.  NO BUENO!  For constipation: Be sure you are drinking enough water; I have read you should divide your body weight in pounds by half and drink that many ounces of water each day.  An over the counter stool softener for constipation is a good idea.  There is also a solution at your local drug store for severe constipation – a bottle of Magnesium Sulfate which is kept near other constipation remedies.  For less than $2 you can have a drink (at least ½ the bottle) and within hours things get moving.  For diarrhea: this is another issue all together.  The best trick I have is something I learned from a nutritionist at Cancer Treatment Centers of America.  She taught me that a banana with a citrus in a smoothie along with pectin can bulk up what is in your intestines and correct the problem. (Try some pineapple, a banana, pectin and almond milk/coconut water.)  Also, make sure the bacteria in your gut are healthy – add culterelle or something similar to your daily pill popping regimen.  If this doesn't solve your issue - keep searching for a solution. Problems in the bathroom are aweful.  OK – ENOUGH POTTY TALK.  But before you use any of these treatments TALK TO YOUR DOCTOR – they need to be aware of your side effects and you want to be sure there won’t be any negative or dangerous interactions with other medications you are taking.
I have found the best way to manage side effects is to keep track of them so you know when they are hitting you, if they are getting better or worse from one treatment to the next, and to figure out what is working and what isn’t working.

Just don’t suffer through side effects, this is an issue that caregivers can help with a great deal because cancer patients might be too overwhelmed to remember and talk about side effects.  A cancer patients body is doing enough work fighting cancer, processing chemo and coping with the emotional components of their illness.  Side effects can really bring you down because a cumulative effect and there are usually solutions to the side effects. 

You can’t survive beautifully when you are suffering more than you must.