I am officially 3 rounds down in my 6 rounds of chemotherapy. This new nausea medication worked surprisingly well and allowed for me to function on Friday and Saturday without being completely confined to bed. I will admit that I still had my nausea episodes, but I felt that they were better controlled this time around and I was able to run errands on Saturday and work on Friday this time. This is very comforting because I wasn't sure what to think about the medication since I only take it on day 1-3 of chemo and my nausea doesn't usually become an issue until day 4.
I am due for a 3 month MRI at the end of next week (First of April). My neurosurgeon hopes this next MRI provides a little more information on the progress of my healing. I am feeling better, so I am hoping that the MRI reflects that healing as well, but I am cautious because I am still undergoing chemotherapy and I have had several oncologists mention that radiation/chemotherapy can cause areas of increased signal intensity on imaging. I almost expect there to be continued signal intensity in the area of my right frontal lobe until Chemotherapy is complete and I have gone several months without any toxins in my body. I also have enough medical knowledge to know that MRI's are not always an accurate tool and it is challenging to rely on them as the sole diagnostic indicator. Clinical correlation is equally relevant and as someone who feels to be improving, I am not sure that my imaging can truly reflect the improvements I have made over the past few months.
I have been spending time on the weekends and afternoons (when it isn't blowing dust) working in the garden and flower beds. We have planted bell peppers, jalapeños, and garlic in pots outside and then have our hydroponic garden indoors. The hydroponic garden is overflowing with dill, basil, mint, chives, cilantro and several other herbs for cooking. We are likely going to plant some tomatoes in our large pots and then maybe we can grow a few more veggies in pots this year. I plan to hang some from the patio and so I am excited to see how it turns out. The peach tree continues to do well. It has begun flowering (which also puts it at risk). It is typical for us to get a late season freeze, so we will have to take preparedness actions to keep the tree alive if it does freeze again. I am hoping not because last year the tree bore peaches and we'd like for that to be the case this year as well. I almost regret living so close to cotton farmers because they make it very challenging to keep any vegetation alive when they spray their pesticides. It is the reason we decided not to put in a bee box and harvest our own honey. Our neighbor mentioned that the cotton farmers are liable if any vegetation is killed off as the result of their sprays, so we have been looking and trying to research into what to look for when the plants die. Out of all the plants we put in last year, 3 of our Indian Hawthorne bushes died, but the rest of our plants seem to be doing well. The dessert willows are late season bloomers so I don't expect to see much from them until closer to summer.
I have been doing Yoga once a week with an instructor, Lindsay Kerr (who is fabulous by the way). I have to admit that at first I was a little skeptical on what to think because I've tried yoga before and never saw any long term success with it (I think I never had much of an open mind to begin with). Turns out, I was wrong :). The most amazing aspect of yoga workouts for me is the fact that I can achieve that same "runner's high" utilizing yoga techniques as I do when I'm running, and that has been something I have been desperately craving for the past 3 months. It is a mentally and physically challenging program that also provides the same stress relief feelings that I get when I run. This has been huge for me. So much so that I had an epiphany with it awhile back. My ultimate goal is to return to running, because that is what I enjoy doing more than anything. I do however, feel a sense of relief because if for some reason I am never able to return to running, I can continue with yoga and get the same benefits. It is like when you have a craving for a food, that can only be satisfied by eating the food; this is how I feel about running and now, thankfully, yoga. This has brought me piece of mind that I have not had for some time. I was almost confident that there was no other way to experience that same "runner's high" in any other sport or exercise; but I have been proven wrong. I will make time in my schedule from here on out to do yoga as regularly as I can.
Wednesday, March 25, 2015
Tuesday, March 10, 2015
A life changed
I returned to my oncologist's office today for my monthly follow up and received some encouraging news. I have completed 2 rounds of chemotherapy and start my 3rd round next week. The nausea that I experience day 3/4-6 is often extreme and prevents me from being able to get out of bed and do much. I assumed that this was just going to be an unfortunate side effect of the treatment because none of the nausea prescriptions have worked well for me so far; but Dr. Radhi insisted that we get the nausea under better control because I shouldn't have to be miserable in bed all day.
We tried phenegren (I can't handle it). Then we tried compazine (I had severe anxiety as a side effect and refuse to take it again. Then we tried marinol, which did absolutely nothing but make me hungry. Now we are going to try a combination of zofran and aprepitant. The aprepitant works by blocking substance P from the brain so it is a way to prevent nausea (not stop nausea that already exists). The plan is I take my zofran in combination with the aprepitant and it will hopefully prevent me from experiencing extreme nausea. I spoke with a friend who also happens to be an oncology nurse and she mentioned that they have been having good success with it. Side effects are minimal and I'm all for that. Prayers that maybe this round will be a little easier.
I do have to have weekly blood draws now because my platelet levels were a little low, but nothing that was concerning or requires us to stop treatment. I'm very happy to know that Dr. Rahdi thinks we can get my nausea under control so that I can function and work during the week and feel I'm in great hands.
I continue to feel better and have more energy each day, so I am very happy to continue to feel like I'm on still on the road to recovery. Baby steps are starting to feel like toddler steps and I think we've found a good balance on my seizure meds (for now) to help me get through the day without significant visual disturbances. I was able to assist with the Guns Up Volleyball Club Texas Tumbleweed Tournament this past weekend and I was amazed at my ability to do more than I honestly expected that I would have been able to.
Now, I have to vent some frustration (not because I am angry with anyone, but because I am angry at a situation). To my conservative friends, I will warn you in advance, that you will not agree with my opinions that I am presenting. I urge you to keep an open mind and hope that you will read this anyway as it is always important to weigh both sides when forming your own opinions (many of you may not realize this, but I read through your thoughts thoroughly and consider your ideas before I comment on your posts because I respect you as an individual and more importantly as my FRIEND). I would never stop being your friend just because we share differing opinions on many subjects. I have taught myself to enter into debate with removed emotions, because otherwise there is no such thing as a constructive discussion and I want to be challenged, not belittled. It is a tough thing to do because it is easier to respond with emotion than it is with rationality at times.
I recently read a blog article that came across my newsfeed on the Affordable Care Act, or "Obamacare" as so many people in my area choose to call it. It listed statistics recently released by an independent research company providing information that over 9 million Americans have signed up for healthcare since the implementation of the ACA. I then made the mistake of scrolling down to read the comments at the end of the article (I did not know these people, but they made some comments that struck a note with me). One comment in particular made a lengthy argument about how they had lost their health insurance because of the implementation of the ACA and had to switch to a plan that included increased premiums and deductibles and higher monthly payments for their family to be covered. While I recognize that this is an unfortunate downside of some of the aspects of the ACA, I was taken aback because this family still had the opportunity to afford to purchase insurance and as someone who has seen and experienced some of the unfortunate aspects of insurance with cancer treatment, I felt they were blowing the situation way out of context. They made the comment that it was incredibly UNFAIR that this happened to them.
Here is the thing....yes, you have to pay more, yes your premiums increased, yes it is unfair, but it could be WORSE. The fact of the matter is that out of all the people who lost insurance coverage from the ACA, it accounts for less than 1% of total insured coverage in the United States. That is not even statistically significant, not to mention that these folks still had the ability to receive insurance from another company.
I know that many of my friends have lost their coverage as a result of the ACA as it had a bigger impact on those who purchased private insurance plans than those who work for a larger business and had an employer based plan. While I sympathize for you, I do not empathize for you and here is why.
Prior to the ACA, at some point I would likely be dropped from my insurance plan because I "cost too much" to insure. As someone who now qualifies as having a pre-existing and chronic condition, I would not have been able to get health insurance after that, which means my cancer treatments would soon become out of pocket expenses. Trust me when I say, that is not cheap. To discriminate against someone because of illness is an atrocity I cannot put into words and I have had patient's in the past who have gone through this very thing. While I will thankfully never have to experience this thanks to recent changes in healthcare law, it gives me an understanding on the issue that many don't take into account. These patient's have been forced into the indigent program where the taxpayers pick up the bill. Unacceptable. Period.
Until the next post!
We tried phenegren (I can't handle it). Then we tried compazine (I had severe anxiety as a side effect and refuse to take it again. Then we tried marinol, which did absolutely nothing but make me hungry. Now we are going to try a combination of zofran and aprepitant. The aprepitant works by blocking substance P from the brain so it is a way to prevent nausea (not stop nausea that already exists). The plan is I take my zofran in combination with the aprepitant and it will hopefully prevent me from experiencing extreme nausea. I spoke with a friend who also happens to be an oncology nurse and she mentioned that they have been having good success with it. Side effects are minimal and I'm all for that. Prayers that maybe this round will be a little easier.
I do have to have weekly blood draws now because my platelet levels were a little low, but nothing that was concerning or requires us to stop treatment. I'm very happy to know that Dr. Rahdi thinks we can get my nausea under control so that I can function and work during the week and feel I'm in great hands.
I continue to feel better and have more energy each day, so I am very happy to continue to feel like I'm on still on the road to recovery. Baby steps are starting to feel like toddler steps and I think we've found a good balance on my seizure meds (for now) to help me get through the day without significant visual disturbances. I was able to assist with the Guns Up Volleyball Club Texas Tumbleweed Tournament this past weekend and I was amazed at my ability to do more than I honestly expected that I would have been able to.
Now, I have to vent some frustration (not because I am angry with anyone, but because I am angry at a situation). To my conservative friends, I will warn you in advance, that you will not agree with my opinions that I am presenting. I urge you to keep an open mind and hope that you will read this anyway as it is always important to weigh both sides when forming your own opinions (many of you may not realize this, but I read through your thoughts thoroughly and consider your ideas before I comment on your posts because I respect you as an individual and more importantly as my FRIEND). I would never stop being your friend just because we share differing opinions on many subjects. I have taught myself to enter into debate with removed emotions, because otherwise there is no such thing as a constructive discussion and I want to be challenged, not belittled. It is a tough thing to do because it is easier to respond with emotion than it is with rationality at times.
I recently read a blog article that came across my newsfeed on the Affordable Care Act, or "Obamacare" as so many people in my area choose to call it. It listed statistics recently released by an independent research company providing information that over 9 million Americans have signed up for healthcare since the implementation of the ACA. I then made the mistake of scrolling down to read the comments at the end of the article (I did not know these people, but they made some comments that struck a note with me). One comment in particular made a lengthy argument about how they had lost their health insurance because of the implementation of the ACA and had to switch to a plan that included increased premiums and deductibles and higher monthly payments for their family to be covered. While I recognize that this is an unfortunate downside of some of the aspects of the ACA, I was taken aback because this family still had the opportunity to afford to purchase insurance and as someone who has seen and experienced some of the unfortunate aspects of insurance with cancer treatment, I felt they were blowing the situation way out of context. They made the comment that it was incredibly UNFAIR that this happened to them.
Here is the thing....yes, you have to pay more, yes your premiums increased, yes it is unfair, but it could be WORSE. The fact of the matter is that out of all the people who lost insurance coverage from the ACA, it accounts for less than 1% of total insured coverage in the United States. That is not even statistically significant, not to mention that these folks still had the ability to receive insurance from another company.
I know that many of my friends have lost their coverage as a result of the ACA as it had a bigger impact on those who purchased private insurance plans than those who work for a larger business and had an employer based plan. While I sympathize for you, I do not empathize for you and here is why.
Prior to the ACA, at some point I would likely be dropped from my insurance plan because I "cost too much" to insure. As someone who now qualifies as having a pre-existing and chronic condition, I would not have been able to get health insurance after that, which means my cancer treatments would soon become out of pocket expenses. Trust me when I say, that is not cheap. To discriminate against someone because of illness is an atrocity I cannot put into words and I have had patient's in the past who have gone through this very thing. While I will thankfully never have to experience this thanks to recent changes in healthcare law, it gives me an understanding on the issue that many don't take into account. These patient's have been forced into the indigent program where the taxpayers pick up the bill. Unacceptable. Period.
Until the next post!
Wednesday, February 25, 2015
The Marathon Continues
This week I have had some friends who are going through some emotional and physical struggles. I have many unspoken prayer requests, so prayer warriors please come together for those who are battling elements out of their comfort zone and don't know quite where to go from here. It has brought about some thoughts in me that I have been considering for a while and I felt the need to put them in words because everyone needs guidance sometimes.
I have gone through an emotional evolution over the last 6 months that I didn't think was humanly possible. Out of my struggles, I have gathered a few thoughts that have really helped me to keep pushing forward even when I want to fall down. I've learned more about myself emotionally in the last 6 months than I knew or gathered over the past 30 years.
I have learned that people don't know what to say in these situations and so they stretch to find words of hope and wisdom to share. It is a bit of a conundrum because the message to be conveyed is meant to be one of positivity and hope, but sometimes it strikes an emotional cord so deep that it brings about great sorrow.
I've learned to accept that in general, people mean well but they often struggle to share the appropriate response. They mean to be caring, loving and supporting, but sometimes it feels as though they are now treating you differently. Suddenly you appear fragile, yet they characterize you as strong for going through this fight.
I've learned that yes, I am strong, but most days I am very weak and emotionally I cannot hold it together all the time. Those who are with me most often know that there are days when no words can be of comfort and even hugs don't help.
I've learned that even mental toughness cannot over come this struggle. In running, you know that at some point, physically, you will lose the will to continue; but mentally you can learn to keep pushing because your body can do more than your mind will lead you to believe. In chemotherapy, you don't have a choice. You swallow the pill or receive the infusion because the alternative is so awful you don't want to even consider it. You continue to do so even though it makes you physically ill to the point where you can't even get out of bed. There is no such thing as mental toughness in cancer treatment, only forced repetition.
I've learned that God will absolutely give you more than you can handle because he recognizes that the only way to move forward is by "resetting" emotionally and that in these instances you are not in control. Sometimes you have to lose it to find it again and he recognizes that need in everyone.
I've learned to be grateful for all emotional experiences (good and bad). It brings about an appreciation of humanity in me that I did not know existed.
I've learned that people in bad situations will not willingly ask for help because they do not want to appear weak. I have thus learned that instead of asking "If you need anything" my words have changed to "what can I do to help". Most often the response I receive is pray, so I have also learned that sometimes dropping in or checking in will present an opportunity for both parties that would have gone unrecognized with one message of "let me know".
I've learned that you will lose friendships because people are most often afraid of what they do not understand and rather than invest emotionally, it is much easier to back away.
I have learned to forgive those who choose to distance themselves because I recognize that they do not want to cause harm and they are making decisions based on the information they have available to them.
Most importantly, I've learned that no one truly understands what you are going through unless they have been there themselves and so finding friendships in others who are going through a similar experience is essential to recovery and emotional stability.
To my friends who are going through some hard times at the moment, just remember that no matter how bad it gets, you continue to put one foot in front of the other and press on. Maybe today was not a good day, but there is always tomorrow. Eventually all things will resolve, and even if it means you have to spend a large amount of time picking the pieces up off the floor and putting the puzzle back together; you will eventually complete the task.
I have gone through an emotional evolution over the last 6 months that I didn't think was humanly possible. Out of my struggles, I have gathered a few thoughts that have really helped me to keep pushing forward even when I want to fall down. I've learned more about myself emotionally in the last 6 months than I knew or gathered over the past 30 years.
I have learned that people don't know what to say in these situations and so they stretch to find words of hope and wisdom to share. It is a bit of a conundrum because the message to be conveyed is meant to be one of positivity and hope, but sometimes it strikes an emotional cord so deep that it brings about great sorrow.
I've learned to accept that in general, people mean well but they often struggle to share the appropriate response. They mean to be caring, loving and supporting, but sometimes it feels as though they are now treating you differently. Suddenly you appear fragile, yet they characterize you as strong for going through this fight.
I've learned that yes, I am strong, but most days I am very weak and emotionally I cannot hold it together all the time. Those who are with me most often know that there are days when no words can be of comfort and even hugs don't help.
I've learned that even mental toughness cannot over come this struggle. In running, you know that at some point, physically, you will lose the will to continue; but mentally you can learn to keep pushing because your body can do more than your mind will lead you to believe. In chemotherapy, you don't have a choice. You swallow the pill or receive the infusion because the alternative is so awful you don't want to even consider it. You continue to do so even though it makes you physically ill to the point where you can't even get out of bed. There is no such thing as mental toughness in cancer treatment, only forced repetition.
I've learned that God will absolutely give you more than you can handle because he recognizes that the only way to move forward is by "resetting" emotionally and that in these instances you are not in control. Sometimes you have to lose it to find it again and he recognizes that need in everyone.
I've learned to be grateful for all emotional experiences (good and bad). It brings about an appreciation of humanity in me that I did not know existed.
I've learned that people in bad situations will not willingly ask for help because they do not want to appear weak. I have thus learned that instead of asking "If you need anything" my words have changed to "what can I do to help". Most often the response I receive is pray, so I have also learned that sometimes dropping in or checking in will present an opportunity for both parties that would have gone unrecognized with one message of "let me know".
I've learned that you will lose friendships because people are most often afraid of what they do not understand and rather than invest emotionally, it is much easier to back away.
I have learned to forgive those who choose to distance themselves because I recognize that they do not want to cause harm and they are making decisions based on the information they have available to them.
Most importantly, I've learned that no one truly understands what you are going through unless they have been there themselves and so finding friendships in others who are going through a similar experience is essential to recovery and emotional stability.
To my friends who are going through some hard times at the moment, just remember that no matter how bad it gets, you continue to put one foot in front of the other and press on. Maybe today was not a good day, but there is always tomorrow. Eventually all things will resolve, and even if it means you have to spend a large amount of time picking the pieces up off the floor and putting the puzzle back together; you will eventually complete the task.
Monday, February 9, 2015
Progress Continues
I visited the neurosurgeon this morning and received some GREAT news :). The neurosurgeon explained that my last MRI (which was done at the beginning of January) shows an area of increased uptake along the medial and inferior areas of the right side of my brain. Dr. Baronia explained that he is not concerned with this just yet as this has been present in my last 3-4 MRIs and has been considered stable. He stated that it is impossible to tell whether it is tumor or the treatment that is causing this, but the good news is, it's not changing. He continued to emphasize that I will need monthly MRIs to follow this and see how things continue. He explained that if it was tumor, we likely would not be doing surgery because it is in the fiber tracks of the brain and I would be left with permanent disability if they attempted to remove it. So for now, we are watching and waiting for the chemotherapy to do its thing and see how future MRIs present. Since there has been no change in the imaging since we started this process, we are assuming the slight increased uptake is likely residual from surgery and treatment (this is not the great news, it is just good news on stable results and no progression).
The GREAT news is that I have been cleared to begin a light exercise regimen and I can have 1-2 glasses of wine a week (as long as it is in moderation). Dr. Baronia explained that we would assess returning to running after my 1 year anniversary of surgery, but in the mean time I can start working into an exercise routine over the next month. He advised me to be cautious and go slow and so I will likely start light weights at home with the husband and maybe get on my bike trainer a couple of times a week to get my heart rate elevated. He told me to stop taking elevators as well and use the stairs.
I started my first round of 6 chemotherapy sessions last month and after about day 3 the nausea was significant. It got to the point where the zofran wouldn't do any good during the day, even with continued doses. I go back to see my oncologist tomorrow and will discuss additional nausea medication options during the day to help get me through. I manage at night pretty well with my attivan, as it controls my nausea better than the zofran does after day 3. I'm learning my attivan serves multiple purposes for me other than anti-anxiety, and sleep. I've received several suggestions for the nausea medication marino, which is supposed to be very effective at treating nausea related to chemotherapy.
Next Tuesday I will also visit the neurologist to determine the course of medication change with the dilantin over the next few months. They really want me off this medication and I will be ok with the change because the dilantin makes me sleepy and I'd like to be able to go through the day without being tired after taking my medication.
Overall Dr. Baronia was very pleased with my progress and happy with the results thus far. I will go back to see him in 3 months for continued follow up and will likely require another MRI before that time. I'll be due for another MRI in April and I think we will have a more honest picture of progress at that time with the area of increased signal intensity. In the mean time, I am happy to have continued improvement in my quality of life and I look forward to a short vacation here at the end of February.
The GREAT news is that I have been cleared to begin a light exercise regimen and I can have 1-2 glasses of wine a week (as long as it is in moderation). Dr. Baronia explained that we would assess returning to running after my 1 year anniversary of surgery, but in the mean time I can start working into an exercise routine over the next month. He advised me to be cautious and go slow and so I will likely start light weights at home with the husband and maybe get on my bike trainer a couple of times a week to get my heart rate elevated. He told me to stop taking elevators as well and use the stairs.
I started my first round of 6 chemotherapy sessions last month and after about day 3 the nausea was significant. It got to the point where the zofran wouldn't do any good during the day, even with continued doses. I go back to see my oncologist tomorrow and will discuss additional nausea medication options during the day to help get me through. I manage at night pretty well with my attivan, as it controls my nausea better than the zofran does after day 3. I'm learning my attivan serves multiple purposes for me other than anti-anxiety, and sleep. I've received several suggestions for the nausea medication marino, which is supposed to be very effective at treating nausea related to chemotherapy.
Next Tuesday I will also visit the neurologist to determine the course of medication change with the dilantin over the next few months. They really want me off this medication and I will be ok with the change because the dilantin makes me sleepy and I'd like to be able to go through the day without being tired after taking my medication.
Overall Dr. Baronia was very pleased with my progress and happy with the results thus far. I will go back to see him in 3 months for continued follow up and will likely require another MRI before that time. I'll be due for another MRI in April and I think we will have a more honest picture of progress at that time with the area of increased signal intensity. In the mean time, I am happy to have continued improvement in my quality of life and I look forward to a short vacation here at the end of February.
Tuesday, January 13, 2015
Here We Go Again
We met with the hema-oncologist today and my scans continue to look good, with no tumor progression and very stable imaging results. I have been able to return to part time status at work and continue with patient care. Recovery continues to be slow, but I am happy to be at a point where I can function a little more normally. My seizure meds are still a little jicky so I will have to work with the neurology team to get my meds properly adjusted. Currently I am taking 2g of Keppra daily and they have dropped me down to 200 mg of dilantin (I was having trouble with the 300 mg). I suspect they will want to up my keppra dose and wean me off the dilantin since they didn't want me on dilantin in the first place.
The next course will be 6 more rounds of chemotherapy. I will be on the full dose of temodar every 28 days orally. I will take chemo 5 days a week in a pill form and then I will rest 23 days. We will do this for 6 months and then we re-evaluate and see what things look like. I start chemo again on Monday (A little sooner than I anticipated). I'm a little nervous about this next chemo round as I will be on a much heavier dose, so I'm not sure how I'm going to respond. The suggestion was made to take the chemo at night before I go to bed so that I sleep through the potential side effects, but it is a wait and see thing. I did very well with the last round of chemo, but I was also in much better shape and feeling better physically. I have lost 8 lbs since this process started. I would say that is awesome, but the weight that has come off has been muscle mass and I am now down to 147 lbs. I am hoping that in a month or so, I can receive clearance from the neurosurgeon to start a light strength training program. I miss exercise desperately and I am really looking forward to getting back into a weekly routine to build muscle strength and more energy. The good news is that I am getting some good walking in daily (although not much). I'm usually able to get about a mile or so in of walking at work so it certainly better than when I was bedridden for two weeks, but I crave movement and I'm beginning to find that just walking is not satisfying enough, even though I can't really tolerate much more than 4 hours of work in a day without being pretty tired.
Tomorrow my mom will be returning to Austin for a few weeks and Jeramy and I will work to get back into a routine with just the two of us. We have been able to work out a schedule so that Jeramy can take me to work and pick me up to take me home after my half day shift. It will be a good change, but I am sad to see my mom go because she has been such an awesome force in my life over the past few months staying up here to take care of me. I've gotten so used to her being here that It is very emotional to let her go. This is a challenge that you cannot anticipate when you are so far away from your family. I've been incredibly blessed to have family and friends that have been here to walk me through this process and help me when I am in need.
Monday, December 29, 2014
A Holiday season of recovery
I figured today as I was at work talking with one our technicians that I was probably due for a blog update because it had been awhile since my last post. So here it is!
The holidays were very eventful for me. We had my parents, sister and her husband, my in-laws and my husbands younger brother and his two kids over for Christmas. I was worried at first because I wasn't sure how I was going to handle all the people. When I'm in an overstimulating environment for too long, I start to have burning on the left side of my body and usually can only last for 10-20 minutes before I have to leave to find a quieter environment so things can settle down. Amazingly I was able to spend a good majority of my time with the family and did not have to go lay down in the bedroom to get away from all the commotion. My sweet, sweet husband went to the store and purchased non-alcoholic champagne for me to toast with on New Years. I am still not allowed to have any alcohol because it lowers the seizure threshold and with how frequently I have been having seizure activity, it is very ill advised for me to chance it. So I am abstaining from the drinking for a while (although I look forward to my first glass of wine once I get clearance from the physician's). They wouldn't even let me have a glass of wine on my 30th birthday (bummer, I know).
I am now 3 weeks and 3 days out of radiation and I can tell I'm starting to improve (more so now than the past few weeks). It is still a very slow process, but I can now get through the day with very little issue in terms of seizure activity and I have been able to slowly increase my hours at work. Today I worked 2 hours in the morning and another 2 in the afternoon for a total of a little over 4 hours. This is good timing because as of today my FMLA is completely depleted and I had to return to part time status or risk losing my benefits. Our goal is to work up to where I can work 4 hours straight, but I am not quite there.
The best news of all is that I resumed patient treatment today and treated my first patient in over 3 months. It was such a good feeling even though I was pretty tired after. I will have a couple more patients on my schedule this week, but they are very easy and so it will allow me to better pace myself so I don't wear out too quick. The other good news is that my dilantin dosage has been reduced from 300 mg a day to 200 mg a day. I notice a difference because I was starting to have some issues and felt like it might be time for a medication adjustment. I talked to Dr. Baronia on Saturday (because that is the awesome neurosurgeon that he is) and he instructed me to drop down 100mg on the dilantin and see how I did. I notice a difference. I don't have as hard of time with it as I was starting to while I was taking it three times a day. I suspect we will remain on this dose for a period and then continue to work to wean me off the dilantin completely. I have been successful at weaning off several medications so I am very thankful for that because I am not a fan of taking meds. Currently we are in the process of weaning me off the lorazepam (which I was only taking at night to help me sleep) so there is more positive news there as well.
I go back on January 6th for a repeat MRI scan to see how things have been doing over the past month and then I will follow up with the oncology team a week later to determine what the next course of treatment will be for me. I am feeling better every day and today was an emotional turning point for me because I was worried about whether or not I would be able to return to work. Today was the first day I felt like I will be able to return to work full time at some point. Yay!
The holidays were very eventful for me. We had my parents, sister and her husband, my in-laws and my husbands younger brother and his two kids over for Christmas. I was worried at first because I wasn't sure how I was going to handle all the people. When I'm in an overstimulating environment for too long, I start to have burning on the left side of my body and usually can only last for 10-20 minutes before I have to leave to find a quieter environment so things can settle down. Amazingly I was able to spend a good majority of my time with the family and did not have to go lay down in the bedroom to get away from all the commotion. My sweet, sweet husband went to the store and purchased non-alcoholic champagne for me to toast with on New Years. I am still not allowed to have any alcohol because it lowers the seizure threshold and with how frequently I have been having seizure activity, it is very ill advised for me to chance it. So I am abstaining from the drinking for a while (although I look forward to my first glass of wine once I get clearance from the physician's). They wouldn't even let me have a glass of wine on my 30th birthday (bummer, I know).
I am now 3 weeks and 3 days out of radiation and I can tell I'm starting to improve (more so now than the past few weeks). It is still a very slow process, but I can now get through the day with very little issue in terms of seizure activity and I have been able to slowly increase my hours at work. Today I worked 2 hours in the morning and another 2 in the afternoon for a total of a little over 4 hours. This is good timing because as of today my FMLA is completely depleted and I had to return to part time status or risk losing my benefits. Our goal is to work up to where I can work 4 hours straight, but I am not quite there.
The best news of all is that I resumed patient treatment today and treated my first patient in over 3 months. It was such a good feeling even though I was pretty tired after. I will have a couple more patients on my schedule this week, but they are very easy and so it will allow me to better pace myself so I don't wear out too quick. The other good news is that my dilantin dosage has been reduced from 300 mg a day to 200 mg a day. I notice a difference because I was starting to have some issues and felt like it might be time for a medication adjustment. I talked to Dr. Baronia on Saturday (because that is the awesome neurosurgeon that he is) and he instructed me to drop down 100mg on the dilantin and see how I did. I notice a difference. I don't have as hard of time with it as I was starting to while I was taking it three times a day. I suspect we will remain on this dose for a period and then continue to work to wean me off the dilantin completely. I have been successful at weaning off several medications so I am very thankful for that because I am not a fan of taking meds. Currently we are in the process of weaning me off the lorazepam (which I was only taking at night to help me sleep) so there is more positive news there as well.
I go back on January 6th for a repeat MRI scan to see how things have been doing over the past month and then I will follow up with the oncology team a week later to determine what the next course of treatment will be for me. I am feeling better every day and today was an emotional turning point for me because I was worried about whether or not I would be able to return to work. Today was the first day I felt like I will be able to return to work full time at some point. Yay!
Tuesday, December 9, 2014
On to the next Step
Well,
It is very difficult to know where the best place to start this post is so I apologize if it jumps around a lot. I was not sure how to put the words together correctly to allow for even flow as so many thoughts and emotions have been running through my mind over the past 24 hours. Today has been very physically and emotionally draining for me. The past few weeks I have flown low on the radar because I have had an increasingly difficult time with the radiation. The Thursday of Thanksgiving, I began to experience headaches and transient ischemic attack-like symptoms that ended up having me placed on a steroid medication. I was able to complete another week of treatment and then Wednesday I had a TIA event during radiation and had to have my steroid dose upped to 3 times a day. Things were going well until about Sunday, when I began having more frequent TIA episodes (and a slight histamine reaction to the decadron). Monday the decision was made to hold off on radiation and up my dose to four times a day with the steroid and I had to be monitored for increased intra-cranial pressure.
Monday I sat down with my mom and my husband and spoke about "how we were going to finish the last couple of radiation visits". As the conversation continued, I came to the conclusion that I was most likely going to have to forego the last couple of treatments because it was getting to the point where I couldn't get out of bed and function like a person anymore and I felt like if I were to receive anymore radiation, it might just kill me. This decision was not made lightly, but I felt very at peace with it. I know my body better than the doctor's and I feel like sometimes radiation oncologists get caught up in the numbers and forget about the patient.
I literally spent all day today at the doctor's office and had to have a repeat MRI to see about increased ICP. I spoke with my nurse about my "reaction" to decadron and she mentioned I was likely having a histamine response and that taking claritin or benadryll may help to reduce the reaction. So far, so good. I have not experienced the reaction after taking the dexamethasone near to the extent I was before. I hope this trend continues.
I am still convinced that I am having ICP issues because the TIAs are happening on the right side of my body instead of the left (where we would expect to have issues). I spoke in depth with my radiation oncologist and hema-oncologist and staff of nurses and despite the fact that my radiation oncologist wants me to finish out the last two sessions, I have decided not to continue with it. The hems-oncologist argued a great point that there are no studies out there that show any significant difference in not doing the last few treatments. I have had the equivalent of 4800 cGys/48 Gys(radiation units) and all the research I am seeing online shows that for my type of tumor, it is typical to have treatment ranges between 4000-4500cGys or 40-45Gys, which makes me even more confident in my decision to discontinue.
The thing we have to remember about radiation is that is based on "guidelines" from case studies and not everyone fits into the same box when it comes to treatment. I'd like to make it very clear that I am not stopping treatment completely, I am simply ending my course of radiation a few treatments early. I still have a very long road to recovery ahead of me, but I am confident that I will not be able to recover without further issue. It will likely take me a few weeks to normalize as radiation side effects can last 3-4 weeks after treatment, but I fully anticipate that I will be feeling better in a few weeks and be able to get back to a more regular schedule.
There were a lot of tears shed today, but they were mostly tears of relief as I feel I am headed in the right direction and things will soon start looking up. Thank you for your continued prayers and support and I am so glad to put this chapter behind me.
It is very difficult to know where the best place to start this post is so I apologize if it jumps around a lot. I was not sure how to put the words together correctly to allow for even flow as so many thoughts and emotions have been running through my mind over the past 24 hours. Today has been very physically and emotionally draining for me. The past few weeks I have flown low on the radar because I have had an increasingly difficult time with the radiation. The Thursday of Thanksgiving, I began to experience headaches and transient ischemic attack-like symptoms that ended up having me placed on a steroid medication. I was able to complete another week of treatment and then Wednesday I had a TIA event during radiation and had to have my steroid dose upped to 3 times a day. Things were going well until about Sunday, when I began having more frequent TIA episodes (and a slight histamine reaction to the decadron). Monday the decision was made to hold off on radiation and up my dose to four times a day with the steroid and I had to be monitored for increased intra-cranial pressure.
Monday I sat down with my mom and my husband and spoke about "how we were going to finish the last couple of radiation visits". As the conversation continued, I came to the conclusion that I was most likely going to have to forego the last couple of treatments because it was getting to the point where I couldn't get out of bed and function like a person anymore and I felt like if I were to receive anymore radiation, it might just kill me. This decision was not made lightly, but I felt very at peace with it. I know my body better than the doctor's and I feel like sometimes radiation oncologists get caught up in the numbers and forget about the patient.
I literally spent all day today at the doctor's office and had to have a repeat MRI to see about increased ICP. I spoke with my nurse about my "reaction" to decadron and she mentioned I was likely having a histamine response and that taking claritin or benadryll may help to reduce the reaction. So far, so good. I have not experienced the reaction after taking the dexamethasone near to the extent I was before. I hope this trend continues.
I am still convinced that I am having ICP issues because the TIAs are happening on the right side of my body instead of the left (where we would expect to have issues). I spoke in depth with my radiation oncologist and hema-oncologist and staff of nurses and despite the fact that my radiation oncologist wants me to finish out the last two sessions, I have decided not to continue with it. The hems-oncologist argued a great point that there are no studies out there that show any significant difference in not doing the last few treatments. I have had the equivalent of 4800 cGys/48 Gys(radiation units) and all the research I am seeing online shows that for my type of tumor, it is typical to have treatment ranges between 4000-4500cGys or 40-45Gys, which makes me even more confident in my decision to discontinue.
The thing we have to remember about radiation is that is based on "guidelines" from case studies and not everyone fits into the same box when it comes to treatment. I'd like to make it very clear that I am not stopping treatment completely, I am simply ending my course of radiation a few treatments early. I still have a very long road to recovery ahead of me, but I am confident that I will not be able to recover without further issue. It will likely take me a few weeks to normalize as radiation side effects can last 3-4 weeks after treatment, but I fully anticipate that I will be feeling better in a few weeks and be able to get back to a more regular schedule.
There were a lot of tears shed today, but they were mostly tears of relief as I feel I am headed in the right direction and things will soon start looking up. Thank you for your continued prayers and support and I am so glad to put this chapter behind me.
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