I started this blog through voice to text on my phone and now I am trying to type which is proving to be painfully slow. It's been about six weeks after my last surgery /and if you don't know by now the results came back as grade 3 anaplastic astrocytoma again. The good is that it did not increase in grade. The problem this time is that it's not operable because if they were to operate it could cause more damage than good. If you have been following, Timmy made its reappearance in the corpus callosum (read more here: http://biology.about.com/od/anatomy/p/corpus-callosum.htm ) So what does this mean now? That means the Temodar was not working and we have to switch it up and try a new treatment. Some may have been under the impression that it was gone, never to return because my last MRI was clear, but that's just the thing with gliomas. I surly was not expecting it to come back so soon. There is always a possibility of it coming back even when I finish this treatment. Now the plan is every six weeks I take a series of five pills which is the chemo and every two weeks I take a medication by IV called Avastin which is an anti-body.
Let me back up for second...since surgery I've had some deficits namely weakness on my right side. I've had some cognitive issues and I'm not allowed to drive which is really difficult when you're so independent. It's very difficult relying on others for so much. Thank God for awesome family, friends and a husband who is so been incredibly helpful through the transition . I know that my independence will come back, its gotten better already. But up until three days ago I couldn't shower by myself, I could barely dress or get myself get out a chair. These things most 30 year olds take for granted. I miss working out, I miss CrossFit. I hope to be back to that soon. I started physical therapy last week and I am already seeing improvement. Also I am hoping to get my treadmill back from my sister so I can practice walking and getting stronger.
I've only had two treatments with IV and one with the pill and Dr. says that it should I should see significant improvement in 2 to 3 treatments. Here's to hoping for the best! In all honesty one of the hardest things I've ever faced is the side effects of where this tumor is located. It affects my bladder among other things which sounds like a small price to pay for having my life to live still but it's truly annoying getting up in the middle of the night to go to the bathroom one to even three times. I take meds for that now and I shouldn't have to forever. Once the swelling goes down the symptoms should cease. Other small things that have been affected; one is my handwriting. I cannot sign my name but I know that that will come back.
When I was re-diagnosed now for technically the third time I was really depressed and didn't really want to do anything but I have so many friends and family rallying behind me and it's hard not to stay motivated and just keep pushing. I still have my faith and believe whole heartedly that if this is Gods plan then who am I to question? And I am NOT giving up. If I could inform people of one thing.. I don't know if they would understand but it takes a lot of energy to do just about anything right now including talk--although that has improved too--so if you haven't heard from me please don't take offense. People have been asking what can they do for me and if I knew I would ask but I also know that my pride gets in the way and I hate asking for help. Reaching out to hang out, go out means the world, and those who even just ask to come over and hang out is great even if only for an hour makes a difference.
I am not back at work yet, that's another place I miss a lot. But several co-workers have reached out over the past 6 weeks and for that I am grateful. Thanks as always for keeping me in your thoughts and prayers. The Devil will not win this war!!!
Thursday, July 2, 2015
Thursday, March 26, 2015
When life hands you lemons...
Recently brain cancer has been in the lime light with the stories like Brittany Maynard who was 29 and Lauren Hill, 19, among others. This has brought some awareness to the nasty disease, but like all things in the news, it too will fizzle out and be forgotten, replaced by the next big story. Bringing recognition to the rarity of brain tumors and brain cancer led me to remember that I had not written a blog in quite some time. It's been so long that I am not even sure where I left off, or for that matter...where to start this entry.
I recently completed my 8th month of chemotherapy. I have four months left to complete 12 months of chemo. I have been pretty darn blessed throughout the process. I have been lucky enough to be able to take chemo in the form of pills, take them at home, and sleep through whatever horrible things it is doing to my insides. I made the mistake one month by taking the wrong anti-nausea pill before my chemo and that, my friends, is a mistake I will never make again. I quickly discovered what I think others who do not handle chemotherapy well experience. I was hugging the porcelain throne for several hours that night. I woke up my poor husband who got a blanket and rested on the bathroom floor next to me until I was ready to try and drag myself to the bed again. It was not pretty. Other than that night I do okay. Occasionally I am more tired by the end of the chemo week, but nothing I can't handle. I also work out a lot and feel that combats most of my fatigue.
There have been a couple changes in my doctors since the last time I posted something. I was seeing a radiation oncologist, a regular oncologist, and a neurologist all in Jacksonville, FL and a neuro-oncologist in Atlanta. I loved my neuro-oncologist in Atlanta, but driving back and forth even every couple of months was getting tiresome. I found out that my insurance was accepted at Mayo in Jacksonville, FL where they have the only neuro-oncologist in Florida. I talked to my docs in Atlanta and made the switch. She was happy to hand me off to Dr. Jaekle. I now see just him. I was released from seeing a neurologist and oncologist because Dr. Jaekle is both. Dr. Jaekle prefers to do MRIs every two months (as opposed to every 3 months that Dr. Dunbar was doing). My last MRI was the end of January and all was clean as a whistle! I say, if it could be any cleaner I would be cured. My next scan is at the end of April and I am expecting similar awesome results.
Speaking of being awesome, during the past year or so I kept hearing this thing called IDH1 mutant gene. I did not know what it meant, what it was or how it affected me. I finally asked my doctor about it and discovered that it was favorable to have this gene. In terms that I was finally able to understand, my doctor shared that the IDH1 gene allowed my tumor to stay localized. What does that mean? Well, when my tumor decided to rear it's ugly face again last year, it did so on the outside of the cavity of the previous tumor. As most of you know, my surgeon was able to do yet another, beautiful, total gross resection...meaning he got all that he could see with the human eye. A total gross resection followed by radiation and chemo gives me a much higher chance of long term survival having the IDH1 gene than not having it. You can read more here: http://www.ascopost.com/ViewNews.aspx?nid=14004
Side note: this article is not in any way, shape or form representative of my doctors views. I just found this and wanted to share in case someone reading this was having a difficult time understanding what I was trying to say. Please ask your doctor about this if you have any questions.
Just as I suspected, I am going to beat this thing called cancer. Every day more and more advances in cancer treatment and care are coming out. I am blessed to live in a world where I have a fighting chance. I also have strong feelings about maintaining a positive attitude along with the treatment for the one-two-punch-jab-kick-and-upper-cut that fighting cancer needs.
Thinking back, I believe my last post was about losing my hair when I was going through the six weeks of radiation and chemo consecutively. As you might have read, going in to the third week of radiation I started losing my hair...and losing it fast. I took control and wound up shaving it. It was liberating and terrifying all at the same time. I invested in scarves to wrap my head with and did that for about 3-4 weeks before I said "to hell with it" and just started rocking it bald. I even got married bald! Once I got through the feeling that everyone was looking at me, I embraced it. It felt good to feel so strong despite being faced with such a "terminal" illness. I wanted people to ask me my story, I wanted to share with them what I have been through. I wanted them to see that cancer does not define who I am. Cancer does not define the person facing it. My name is not Cancer. My name is TARA and I am kicking cancers ass. So when life hands you lemons...make the best with what you got...be that lemonade or a lemon martini!
That's all for today, folks. I will try not to take so long next time to write another blog. :)
I recently completed my 8th month of chemotherapy. I have four months left to complete 12 months of chemo. I have been pretty darn blessed throughout the process. I have been lucky enough to be able to take chemo in the form of pills, take them at home, and sleep through whatever horrible things it is doing to my insides. I made the mistake one month by taking the wrong anti-nausea pill before my chemo and that, my friends, is a mistake I will never make again. I quickly discovered what I think others who do not handle chemotherapy well experience. I was hugging the porcelain throne for several hours that night. I woke up my poor husband who got a blanket and rested on the bathroom floor next to me until I was ready to try and drag myself to the bed again. It was not pretty. Other than that night I do okay. Occasionally I am more tired by the end of the chemo week, but nothing I can't handle. I also work out a lot and feel that combats most of my fatigue.
There have been a couple changes in my doctors since the last time I posted something. I was seeing a radiation oncologist, a regular oncologist, and a neurologist all in Jacksonville, FL and a neuro-oncologist in Atlanta. I loved my neuro-oncologist in Atlanta, but driving back and forth even every couple of months was getting tiresome. I found out that my insurance was accepted at Mayo in Jacksonville, FL where they have the only neuro-oncologist in Florida. I talked to my docs in Atlanta and made the switch. She was happy to hand me off to Dr. Jaekle. I now see just him. I was released from seeing a neurologist and oncologist because Dr. Jaekle is both. Dr. Jaekle prefers to do MRIs every two months (as opposed to every 3 months that Dr. Dunbar was doing). My last MRI was the end of January and all was clean as a whistle! I say, if it could be any cleaner I would be cured. My next scan is at the end of April and I am expecting similar awesome results.
Speaking of being awesome, during the past year or so I kept hearing this thing called IDH1 mutant gene. I did not know what it meant, what it was or how it affected me. I finally asked my doctor about it and discovered that it was favorable to have this gene. In terms that I was finally able to understand, my doctor shared that the IDH1 gene allowed my tumor to stay localized. What does that mean? Well, when my tumor decided to rear it's ugly face again last year, it did so on the outside of the cavity of the previous tumor. As most of you know, my surgeon was able to do yet another, beautiful, total gross resection...meaning he got all that he could see with the human eye. A total gross resection followed by radiation and chemo gives me a much higher chance of long term survival having the IDH1 gene than not having it. You can read more here: http://www.ascopost.com/ViewNews.aspx?nid=14004
Side note: this article is not in any way, shape or form representative of my doctors views. I just found this and wanted to share in case someone reading this was having a difficult time understanding what I was trying to say. Please ask your doctor about this if you have any questions.
Just as I suspected, I am going to beat this thing called cancer. Every day more and more advances in cancer treatment and care are coming out. I am blessed to live in a world where I have a fighting chance. I also have strong feelings about maintaining a positive attitude along with the treatment for the one-two-punch-jab-kick-and-upper-cut that fighting cancer needs.
Thinking back, I believe my last post was about losing my hair when I was going through the six weeks of radiation and chemo consecutively. As you might have read, going in to the third week of radiation I started losing my hair...and losing it fast. I took control and wound up shaving it. It was liberating and terrifying all at the same time. I invested in scarves to wrap my head with and did that for about 3-4 weeks before I said "to hell with it" and just started rocking it bald. I even got married bald! Once I got through the feeling that everyone was looking at me, I embraced it. It felt good to feel so strong despite being faced with such a "terminal" illness. I wanted people to ask me my story, I wanted to share with them what I have been through. I wanted them to see that cancer does not define who I am. Cancer does not define the person facing it. My name is not Cancer. My name is TARA and I am kicking cancers ass. So when life hands you lemons...make the best with what you got...be that lemonade or a lemon martini!
That's all for today, folks. I will try not to take so long next time to write another blog. :)
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