Disclaimer
- I am super tired and still very overwhelmed by everything that has happened
in the past few weeks. So, if I don't make sense, seem to ramble, or just
go off-topic, be gentle with me. I'm kind of fragile right now.
******************************
As you can imagine, the past few weeks have been just hell for me; trying to process everything has exhausted me mentally, physically, spiritually....really, it took me down for a good two weeks.
Because, after I got all the news that my CEA is up and my tumors have grown....yeah....that Thursday, I was diagnosed with lymphadema in my lower extremities. The swelling that I have been having for the past two months appears to be caused by those two rogue lymph nodes that I may have mentioned in the last post. They showed up on the CT scan as enlarged, and appear to be the reason I am having this swelling.
Unfortunately, I went into the appt on that Thursday with no expectation whatsoever that I might be diagnosed with lymphadema, and the poor girl who walked me through everything....well, I was her first patient to diagnose. Ever. She had just returned from lymphadema certification that Tuesday. And, here I am, in her office, crying my eyes out because not only do I find out that my chemo isn't working, my tumors are growing and my CEA is up, but now you are also going to tell me that I have this thing that I am going to have to deal with for the rest of my life, and if I don't do therapy 5 times a week for 2 hours each day, I could end up with elephantitis? Yeah - I wasn't in a good place.
I recovered from that, though, and I have been doing the therapy as instructed. I usually get between 3 and 4 therapy sessions in a week, just because 5 seems almost impossible, with everything I have to do around it. Matter of fact, the only reason I am home today and able to send this in is because I cancelled my appt today; I so needed a break. Just, to not be down at CTCA for a day. I love that place, but when I have to be there every single day, it gets completely overwhelming.
So, yeah. That's been quite the thing. I won't go into the nitty-gritty; I should, but I just don't feel like it. The first day of therapy included massage and then wrapping my leg in a layer of gauze, foam., then 8 (I think) ace bandages, keeping a very tight compression on my leg. There also was no way for me to walk out the door, because they had no footwear to place over the 3/4" of bandages that were on my feet. It was quite the debacle.
But, I won't dwell on that. That was 2 weeks ago, and the issues that I faced (that almost broke me) have been addressed and resolved. Suffice it to say that, where CTCA failed me in some ways, they stepped up in other ways that more than made up for the hiccups.
What else? Oh - Levi and I went to T-Gen this past Friday to talk about clinical trials with Dr. B. (I won't spell his name out, partially because I don't remember how to, and partially to keep his identity at bay...) I'll be honest, we didn't walk in there with the highest of hopes. Our last appointment there was less than stellar, so we weren't super excited about being there. I am happy to say that Dr. B. was amazing, took time with us to answer any and all questions that we had, and talked with us about the options available to me. There are three - one has already had one round of testing, but I will know this week if I will be able to join in the second round of trial. There is one more that I should hear back about this week, to see if there is availability.
Basically, as I understand it, the trials T-Gen is doing right now are phase one, meaning the drugs they have chosen to test (they are very picky about what they choose) have shown to be effective in the lab and in animal testing, so now they are starting with human trials, first trying to find the maximum tolerable dose, while trying to get some data on side effects and efficacy. This is what I will hopefully be taking part in.
I'll be honest - I wasn't even going to do anything until after the first of the year. However, Dr. B. mentioned several times (without knowing what I had decided) that he would rather get me on a drug trial sooner than later, to make sure that the cancer doesn't go out of control. I wasn't too sure about this, but Levi piped in that he agreed, and that was enough for me. So, as it stands, I am waiting to hear back from them regarding what clinical trial I might be able to take part in.
The bad news about T-Gen is that they are 45 minutes away with no traffic, and they require me to be there for a certain number of days per month per cycle, and that is going to be tough, esp. with Levi working out of town every week right now. But, we will work it out. The longest day is 12 hours there, and the rest seem to be short enough that I can work them in around school drop-off and pick-up, but it's definitely going to put a damper on my lymphadema therapy, so I am not sure how it's all going to work out right now.
Oh! By the way (see, here's the topic jumping taking place...), the lymphadema therapy is working. After some discussion, it was mutually agreed that the wrapping that initially took place wouldn't fit into my life, nor did it accommodate for my back pain (matter of fact, it kicked it up something WICKED!). Instead, I am wearing compression thigh-highs (well, crotch-high's, since they reach all the way up to the tippy-top of my legs), but crotch-high's really doesn't sound as sexy as thigh-highs. Anyway, I digress. The therapy is working, and my swelling is down considerably. Woohoo!
So, lymphadema, T-Gen....what else was I going to tell you about? Oh! I was asked to take part in a fundraising effort for Arizona Assistance in Healthcare (they provide grants to cancer patients undergoing treatment to help with non-medical expenses, like gas, food, rent. etc.), which is called Project Pink. The event is meant to support women with cancer, and is being done in conjunction with a vintage fashion show, put on by Robert Black (his agency is Ford|Robert Black....very schwanky!). I get to wear a vintage-y dress (we tried to get me to fit into an actual vintage dress, but the woman back then were much slimmer and less broad in the shoulders), and the morning of the event, the fine folks at the Red Door Spa at The Wigwam (a resort here in the west valley of Phoenix) will be doing my hair and make-up. Fun part is that they have asked to have Julia come with, so she gets to take part in the fun day of getting all dolled up. Matter of fact, right now, I am trying to figure out how to get enough time pulled together to go to the store and find her a dress! But, I suppose there are worse problems to have. Since I am the honorary chair of this event, I get to speak in front of the attendees and put a face to the foundation, asking them to put more of their money into the pot, so to speak. It's going to be a wonderful event, a mid-day luncheon with a fashion show and lots of networking. And, I get to get all dolled up, which isn't a bad thing. I'm just hoping I can get my pain under control enough to wear heals! LOL!
Okay - I think that's enough for now. I feel like my brain is going to explode. On top of everything else, I have been officially terminated from Honeywell, because I went beyond their allowable 18 months for disability. Because of that, I am dealing with all of the transfers required, including health insurance (which I can't get a solid, single answer on), life insurance policies, etc. It's such a pain in the ass, and just more that I need to try to get a handle on.
*sigh* I know it will get better, eventually. But, right now? I am just tired. Tired and in pain. And overwhelmed.
But, I will get through it. I always do. Meantime. I'll update when I know more.
******************************
As you can imagine, the past few weeks have been just hell for me; trying to process everything has exhausted me mentally, physically, spiritually....really, it took me down for a good two weeks.
Because, after I got all the news that my CEA is up and my tumors have grown....yeah....that Thursday, I was diagnosed with lymphadema in my lower extremities. The swelling that I have been having for the past two months appears to be caused by those two rogue lymph nodes that I may have mentioned in the last post. They showed up on the CT scan as enlarged, and appear to be the reason I am having this swelling.
Unfortunately, I went into the appt on that Thursday with no expectation whatsoever that I might be diagnosed with lymphadema, and the poor girl who walked me through everything....well, I was her first patient to diagnose. Ever. She had just returned from lymphadema certification that Tuesday. And, here I am, in her office, crying my eyes out because not only do I find out that my chemo isn't working, my tumors are growing and my CEA is up, but now you are also going to tell me that I have this thing that I am going to have to deal with for the rest of my life, and if I don't do therapy 5 times a week for 2 hours each day, I could end up with elephantitis? Yeah - I wasn't in a good place.
I recovered from that, though, and I have been doing the therapy as instructed. I usually get between 3 and 4 therapy sessions in a week, just because 5 seems almost impossible, with everything I have to do around it. Matter of fact, the only reason I am home today and able to send this in is because I cancelled my appt today; I so needed a break. Just, to not be down at CTCA for a day. I love that place, but when I have to be there every single day, it gets completely overwhelming.
So, yeah. That's been quite the thing. I won't go into the nitty-gritty; I should, but I just don't feel like it. The first day of therapy included massage and then wrapping my leg in a layer of gauze, foam., then 8 (I think) ace bandages, keeping a very tight compression on my leg. There also was no way for me to walk out the door, because they had no footwear to place over the 3/4" of bandages that were on my feet. It was quite the debacle.
But, I won't dwell on that. That was 2 weeks ago, and the issues that I faced (that almost broke me) have been addressed and resolved. Suffice it to say that, where CTCA failed me in some ways, they stepped up in other ways that more than made up for the hiccups.
What else? Oh - Levi and I went to T-Gen this past Friday to talk about clinical trials with Dr. B. (I won't spell his name out, partially because I don't remember how to, and partially to keep his identity at bay...) I'll be honest, we didn't walk in there with the highest of hopes. Our last appointment there was less than stellar, so we weren't super excited about being there. I am happy to say that Dr. B. was amazing, took time with us to answer any and all questions that we had, and talked with us about the options available to me. There are three - one has already had one round of testing, but I will know this week if I will be able to join in the second round of trial. There is one more that I should hear back about this week, to see if there is availability.
Basically, as I understand it, the trials T-Gen is doing right now are phase one, meaning the drugs they have chosen to test (they are very picky about what they choose) have shown to be effective in the lab and in animal testing, so now they are starting with human trials, first trying to find the maximum tolerable dose, while trying to get some data on side effects and efficacy. This is what I will hopefully be taking part in.
I'll be honest - I wasn't even going to do anything until after the first of the year. However, Dr. B. mentioned several times (without knowing what I had decided) that he would rather get me on a drug trial sooner than later, to make sure that the cancer doesn't go out of control. I wasn't too sure about this, but Levi piped in that he agreed, and that was enough for me. So, as it stands, I am waiting to hear back from them regarding what clinical trial I might be able to take part in.
The bad news about T-Gen is that they are 45 minutes away with no traffic, and they require me to be there for a certain number of days per month per cycle, and that is going to be tough, esp. with Levi working out of town every week right now. But, we will work it out. The longest day is 12 hours there, and the rest seem to be short enough that I can work them in around school drop-off and pick-up, but it's definitely going to put a damper on my lymphadema therapy, so I am not sure how it's all going to work out right now.
Oh! By the way (see, here's the topic jumping taking place...), the lymphadema therapy is working. After some discussion, it was mutually agreed that the wrapping that initially took place wouldn't fit into my life, nor did it accommodate for my back pain (matter of fact, it kicked it up something WICKED!). Instead, I am wearing compression thigh-highs (well, crotch-high's, since they reach all the way up to the tippy-top of my legs), but crotch-high's really doesn't sound as sexy as thigh-highs. Anyway, I digress. The therapy is working, and my swelling is down considerably. Woohoo!
So, lymphadema, T-Gen....what else was I going to tell you about? Oh! I was asked to take part in a fundraising effort for Arizona Assistance in Healthcare (they provide grants to cancer patients undergoing treatment to help with non-medical expenses, like gas, food, rent. etc.), which is called Project Pink. The event is meant to support women with cancer, and is being done in conjunction with a vintage fashion show, put on by Robert Black (his agency is Ford|Robert Black....very schwanky!). I get to wear a vintage-y dress (we tried to get me to fit into an actual vintage dress, but the woman back then were much slimmer and less broad in the shoulders), and the morning of the event, the fine folks at the Red Door Spa at The Wigwam (a resort here in the west valley of Phoenix) will be doing my hair and make-up. Fun part is that they have asked to have Julia come with, so she gets to take part in the fun day of getting all dolled up. Matter of fact, right now, I am trying to figure out how to get enough time pulled together to go to the store and find her a dress! But, I suppose there are worse problems to have. Since I am the honorary chair of this event, I get to speak in front of the attendees and put a face to the foundation, asking them to put more of their money into the pot, so to speak. It's going to be a wonderful event, a mid-day luncheon with a fashion show and lots of networking. And, I get to get all dolled up, which isn't a bad thing. I'm just hoping I can get my pain under control enough to wear heals! LOL!
Okay - I think that's enough for now. I feel like my brain is going to explode. On top of everything else, I have been officially terminated from Honeywell, because I went beyond their allowable 18 months for disability. Because of that, I am dealing with all of the transfers required, including health insurance (which I can't get a solid, single answer on), life insurance policies, etc. It's such a pain in the ass, and just more that I need to try to get a handle on.
*sigh* I know it will get better, eventually. But, right now? I am just tired. Tired and in pain. And overwhelmed.
But, I will get through it. I always do. Meantime. I'll update when I know more.
Comments:
steffy said...
hang
in there -- sending healing vibes.
October
22, 2014 at 4:06 PM
I
know it is expensive but Cobra should be an option for 18 months as far as
insurance goes. I went through the same thing, job, then no job, Cobra and then
end of Cobra while going through treatment. It truly is the last thing you need
to worry about, isn't it? Too bad you weren't able to go back briefly just to
reset that date. I am praying for you hon I wish I could take the load off your
back...you have so much to live for and I know that someway, somehow you WILL
get to live that life!! Now rest! Love to you and the family..... Laura Loe
October
22, 2014 at 8:10 PM
I
am so sorry to read how difficult things are. My thoughts are with you.
October
23, 2014 at 1:57 AM
FalafalFever said...
When
is the Assistance in Healthcare event? I went to the website and found only
info on 2013 events. I'm local so would like to attend and know several others
who would also like to attend or be involved.
October
30, 2014 at 4:00 PM
FalafalFever said...
Oh
shoot, nevermind. I see it was yesterday.
October
30, 2014 at 4:01 PM
thinking
of you and your family
November
22, 2014 at 9:33 PM
I
am stage 3B. I found your blog when I was first diagnosed in February of 2013.
It has been very helpful. I check regularly for updates. I am thinking of you.
December
22, 2014 at 11:17 AM
Thinking
of you and your family. Merry Christmas and Happy Holidays!
December
22, 2014 at 1:36 PM
