Saturday, April 28, 2012

Updating on Tamoxifen

It's been a while since I last blogged and just realized that I never did update you on how my appointment went with my oncologist and how my infusion went this time around. So, here's to updating.
To say that I was nervous is the understatement of the year. The closer my appointment time got, the higher my heart rate went. I don't know why I was so scared to ask my doctor to let me have time off of Tamoxifen unless it was because if she said "no" I would have to tell her that I was going to do it anyways (and truthfully I had already been off of it for 4 days). So, we went through the usual question/answer session about how I am, how the pain is, how the infusions are going, and then came how is the tamoxifen. I glanced at David, and then told her that it was HORRIBLE. That my legs were hurting terribly and that they were cramping at night too. She did affirm that it was most likely a neuropathy caused by the chemotherapy and Tamoxifen. She offered to call in a new drug called Neurontin that helps with neuropathic pain (and incidentally, hot flashes too). I told her that I would much rather take a break from Tamoxifen and let the pain heal itself by getting rid of the source. She asked how long I wanted off of it and I told her until September, when I finished the IV treatments. She did say that that was entirely too long and that she was not comfortable having me off of it that long. We finally compromised on staying off of it for 3 months (mid-july) and then we would re-evaluate. She thinks the risk is too high to be off any longer, so I agreed with this little "medication holiday" and am happy about it. I appreciate her willingness to allow this and the concern that she also showed me. I told her to go ahead and call in the Neurontin in case I needed it but that I probably wouldn't fill it unless the pain just didn't subside.
After that, I went over to infusion and had, yet again, another wonderful nurse, Melissa. She was awesome!!! Treatment went great until the VERY LAST minutes and then I was struck with horrific abdominal pain and severe nausea...dry heaving and all in the chemo chair. I didn't have any nausea meds ordered, so David gave me another Marinol pill and then a few minutes later the nurse came in with an order for Phenergan and a syringe filled with it. By the time the nurse practitioner came over to evaluate me, I could barely state my name from being so heavily medicated. The Marinol had kicked in and the Phenergan (because it goes into my port) gets into my system instantly. I don't really remember much after the NP came in but I woke up the next morning in my bed so I know I got home safely and slept it all off.

Next treatment is May 10th. Until then, I am hanging in there, still dealing with pain despite being off the Tamoxifen for 2 weeks now. I am going to give it another week and then get the Neurontin filled if the pain doesn't improve significantly. Dr. Mayer did say that the symptoms that are also being caused by the Tamoxifen probably would subside while I am off of it, but that when I start it back that they will come back. I'm okay with that. Right now, I just need a glimmer of hope. Hope that once I hit the 5 year mark and am allowed to be off of it forever that the symptoms will forever be gone. Sometimes, a little hope is all that a person needs to keep moving forward in this journey called life.

Romans 4:18 - Even when there was no reason for hope, Abraham kept hoping and believing...

Tuesday, April 17, 2012

Stopping

It's 2:15 AM and I am awake and anticipating my oncology appointment today. It's the long day for me...labs, meet with doctor, chemo. Will probably be there 6-7 hours. It's also the appointment that could change my life...for at least six months if not forever.
I'm quitting one of my cancer drugs. Tamoxifen. If you are familiar with breast cancer, you know it's the pill you take everyday for 5 years that blocks all of the estrogen receptors in your body. It's the one for ER+ breast cancers. The one that is supposed to cut the risk of recurrence by 50%. For me though, it's the one that is causing fatigue beyond belief, terrible pain in the bones of my legs, horrific hot flashes that leave me feeling like my body is on fire, and depression. This drug builds up in your system and the side effects gradually get worse over time. All of these things have been happening since I started the med, but they are just now at a point where I feel like my quality of life is suffering. In my last post I talked about the intense pain that I thought was being caused by the IV chemo I am taking, but upon speaking to my doctor, it was brought to light that the more likely cause is the Tamoxifen and that the chemo is making it worse. I was given pain meds, but I don't like to take them because I have 2 pre-schoolers at home and it's just not safe. 
This has not been an easy decision to come by and one that I am sure many people are thinking is dumb. Trust me, I've thought that too. I've tried to talk myself into staying on the med just until January when my brother gets back from Afghanistan. The rationale being that if he can deal with the hell that he is in, then surely I can too. I've tried telling myself it will all be worth it in the end, that I am not a quitter, that I just need to suck it up and count myself lucky for being able to get this medicine etc... However, the physical symptoms now are just outweighing everything else. I feel like if I can just take a 6 month break from it...even 4 months, that I will be able to go back on it after the summer and deal with it for 2 more years. That if I can just get a little quality of life back that it will motivate me to know that it WILL get better in 2 years after the drug is stopped forever.
I've struggled with the "what if it comes back" aspect of it and actually talked this over with one of my friends who has breast cancer. I came to the satisfying conclusion that if it ever did come back that I would probably blame myself, but that even if I took the medicine everyday as originally planned without stopping that I would blame myself then too. I would probably wonder if I could have eaten more broccoli, kale, ginger, etc... Or instead of working out 3 hours/week I should have done 5 hours/week. I just feel as though if my disease were to come back on it would be because it was the plan that God had for my life. That round 2 would be another way that my life could potentially glorify Him.
I think now is the time to do it since I am getting the intravenous chemo for the next 6 months so I will be covered by something. Granted, this one doesn't block any estrogen, but it does kill all Her2 cells which cause my cancer to grow very aggressively, so if they start cropping up again during my "holiday" from Tamoxifen, at least that drug should kill them.
I am stepping out on faith. I am stepping out trusting in Jesus and the scripture he gave me 3 years ago...John 11:4 - "This sickness will not end in death. No, it is for God's glory so that God's Son may be glorified through it." I don't know what the end result will be, but do any of us? No. We haven't a clue because if we could see how our lives would turn out there would be no reason for faith. Jeremiah 17:5-8 tells us this:

Cursed is the man
who trust in mere human beings,
who depend on mere flesh and blood for their strength, 
and whose hearts  have turned away from the Lord.
They will be like a shrub  in the desert.
They will not experience good things even when they happen.
It will be as though they were growing in the desert,
in a salt land where no one can live.
But blessed is the man who puts his trust and
 confidence in me. 
They will be like a tree planted near a stream
whose roots spread out toward the water.
It has nothing to fear when the heat comes.
Its leaves are always green.
It has no need to be concerned in a year of drought.
It does not stop bearing fruit.

Please feel free as always to comment, but if you disagree with my decision please be respectful. It has taken me a long time to decide this and did not go without tears, prayer, and fear while making it.

Wednesday, April 4, 2012

Counting Down...And Other Things

This past week has been really hard physically. I had a treatment last Thursday which brought about the usual vomiting the night of, and this time something else that was new. Severe knee, shin, and foot pain. When I say severe, I mean that David rubbed my legs and feet for over an hour and had the heating pad off and on them all night. I took Ibuprofen and Tylenol when I could but nothing seemed to help...especially those first 24 hours after chemo. It hurt to lay down, walk, put pressure of any kind on my legs. Thankfully, the pain is getting better as time goes by, but even now as I lay here blogging, my knees are throbbing. I'm not really sure what to do. I am pretty sure this is related to the chemo so a visit to my general practitioner is probably useless. I am also pretty sure if I emailed my oncologist to tell her, there wouldn't really be a lot we could do about it other than what I already am...NSAIDS, Tylenol, and Epsom Salt baths. So I lay here trying to decide if it's worth an email to just see if she has any suggestions, or if I just wait and discuss it with her at my next treatment in 2 weeks. I don't know... But what I do know is that I don't want to feel like this for the remaining 6 months of this chemo.
Speaking of 6 months...well, that marks the half-way point of treatment for me. I can officially begin counting down now that I am over the hump. Seven months ago I never would have imagined that I would be back in treatment...again. I was in such a great place physically (after a horrific experience with reconstruction attempts and failures) and emotionally and I just didn't understand why the Lord would put me back "in the desert to wander around." But one thing I did feel Him saying was that this was NOT about my cancer, but more about who I would meet and how I would grow. It's been a long long hard journey as I have had to face a lot of things that I tried to forget (i.e. dealing with Kate's death again and missing her like crazy). I have had to learn how to speak my opinion when it would probably be easier to just internalize my feelings and get over it eventually.  I have been blessed to meet my sweet friend Cathey and form a real friendship with her. I have learned so much from her and can see Christ in her like no one's business. It's quite amazing! God most definitely ordained that friendship and I am forever grateful. I also met another young gal at chemo who was with her mom. It brought back sweet memories of my mom visiting from NC and taking me to chemo for nearly a whole month straight. I do cherish that time because I don't get a lot of it with her since we live so far away. I have learned also that it really is okay to rest. To be still. To trust. And to feel.
So, as I look ahead to the next 6 months I can't help but wonder what else God will have for me.  For now, I am camping out...waiting on God to move the and lead me to the next place he has for me. One thing is for sure though, even when things are hard and seem impossible, when I stop to think about the blessings that come with cancer, there really is no room for complaints.

Monday, April 2, 2012

Another Great Easter Video

This was played before our sermon on Sunday. Enjoy!

Sunday's Coming!

My very favorite Easter Message...ever. It's Friday, but Sunday's Coming!!!

Worth the few minutes it takes to watch it.