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Ready or not, here I come…

Well I have tried to postpone this time for as long as I could but the time has now come. I had a scan last Friday (after fighting with my insurance once again!). I wasn’t really concerned about the results of the Y90 procedure, I was more interested in finding out how “the rest” was doing. I knew I had stopped responding to the maintenance chemo from the progression in my liver. Now the question was whether there was progression on the lungs and also were there any new spots elsewhere. I guess I was prepared for the worst as it seems like lately things have been going downhill. I met with my doctor on Monday. He is pleased with the results on my liver so far but he had to break the news to me that there was progression in the lungs too. Again not too surprised but nonetheless very bummed. As I mentioned before, I am out of “big guns” chemo options and I have one chemo left, a new agent that was recently FDA approved. However, I have not been impressed with the results I have seen so far with this new chemo. Some people seem to do well on it but from what I am observing, many people have a short period of stability before the cancer starts progressing again. If we had not seen progression in the lungs, I would have been comfortable trying the chemo pills but when I found out that there was progression outside of the liver, I knew I needed to do something more aggressive. I have been looking at trials for a while, following other fighters’ response to different trials, researching my options, and sending my findings to my Shands doctor for his input. So far, everything I have discussed with him was not the right fit for me. I have been quite excited about a certain trial and he seemed to think that it would be a good option for me but they closed the Phase 1 part of this trial a couple of weeks ago. A Phase 2 trial should be starting soon – but how soon? the time is ticking and I need to do something now. I think it is wise to get into a trial while we are still “healthy” enough. Believe it or not, there are many exclusion criteria to enter a clinical trial and basically you need to be healthy enough. My Shands oncologist suggested a trial called “NHS-IL12 for solid tumors”. This is an immunotherapy trial at the National Cancer Institute (NCI) in Bethesda, MD. I know my oncologist has been keeping his eyes open for me. Although I didn’t have the chance to talk to him about the study, I know that he must have had a good rationale for it. I trust his judgement 1000%! This study is to evaluate the NHS-IL12 agent’s capacity to help the immune system become more active and kill cancer cells that have not responded to standard treatments. A key factor in choosing this trial is that it will not preclude me from other immunotherapy trials if I don’t respond to this agent. In one of his messages, my oncologist mentioned that early results have been promising. They have seen shrinkage of tumors (not just stability) but their sample was small. I actually like the idea of having a foot into the NCI system. There are many trials underway and in the works so if I don’t respond to this one, I believe that they will be able to help me find another trial and already being in the system may help speed things up.

There are obviously pros and cons of being in a trial. In a Phase 1 study (which I am about to enter), researchers are interested in the safety/toxicity of the drug. The goals of a phase 1 study are to find the highest dose of the drug that can be given safely without serious side effects, to understand the effects of the drug on the human body and to find the best/safest administration techniques. In a Phase 1 study, the researchers are not so much interested in the efficacy as they are in the safety of the drug. In my mind, when you are enrolled in a Phase 1 you truly are a lab rat… On the other hand, while enrolling in a Phase 1 trial, you will receive the specific drug, there is no control group receiving a placebo or the “standard of care chemo”. I know I will be monitored like a hawk and that in itself is reassuring. I have had so many issues with our medical insurance that I am feeling relieved to know that my next treatment and scans will be covered by the trial – no need to fight with the bozo doctors at eviCore, the company that Cigna hires to determine if the procedures are “medically necessary”. I am not trying to fool myself, I know more people fail trials than people who achieve remission but again, there are miracle cases and many cases where people at least benefit from a time of stability on drugs that are typically not as as harsh as the regular chemos… So the plan is to fly up to DC next week where I will get blood work, scans, and will meet with the principal investigator. If everything checks out, I will most likely return the next week for the first dose.

A whole new world to navigate ahead of me…

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I just want to catch a break…

Sheesh, so much has happened since my last post. I have kept my Facebook updated but I know that not everyone who reads my blog is on FB so here are the most recent news with some news that have not made it to my FB wall yet…

In my last update I mentioned how I was going to have the 4 spots on my liver ablated. Well that procedure never happened. I was all prepped and ready to go but right before the procedure, CT pictures were taken and I was pretty shocked to hear that there was disease progression from my previous MRI and I now had about 10 spots… I was thrilled that my doc had a plan B and instead he performed an angiogram of my liver to look at the status of all the blood vessels and he did a mock trial for the Y90 procedure, the radiation beads. Everything checked out fine and we decided to move forward with another round of the magic beads. I was a bit nervous I must admit. The first time around came with so many complications but I always said that despite the complications I would have this procedure again because in the end it really reduced the tumor burden on my liver. The good news this time around is that we could treat both sides of the liver at once. I have complete trust in my doctor and was more than willing to try, especially after being told I would *never* be able to get this procedure done again given the damage to my hepatic artery. My interventional radiologist skillfully used the pancreaticoduodenal artery (try to pronounce that haha!) and let the radiation beads loose. The procedure went really well and I was happy to wake up not throwing up and not needing to be hospitalized! That was my deal with my doctor, I would go through the procedure if he promised “no NG tube” afterward, he did promise and held his promise! I had a pretty miserable weekend, feeling completely depleted of energy with low grade fevers on and off but again, it’s always nice when we can put things into perspective and I knew that the fatigue would pass and still thought that it was much better than last time. My doctor called yesterday with “so-so” news… turns out that 2 spots on the left side of the liver were not reached by the beads. He explained that it was a result of using the artery he had to use given that the main one is completely closed… He said he had seen another blood vessel he could use to go after those 2 spots and he still believes the beads would be more effective than just ablating them… so the plan is to check my cancer marker and re-scan in 2 weeks and decide from there what to do. Whatever is decided is fine, I’ll do whatever it takes and at this time I have no chemo option that I believe will really kill the cancer. My last chemo option will at best keep me “stable” and again we want stable until the right clinical trial opens up. This lead me to do more research on clinical trials. There is one that is super promising and my GI oncologist agreed so after contacting them today, I found out that the study is no longer recruiting. Chances are it will go into a Phase 2 trial but we have no clue when… My oncologist gave me another one to research. I contacted the principal investigator and heard back within the hour which is always a treat. He is suggesting that I send my stuff over for them to review and then possibly make an in-person appointment. This study would be in Maryland so it would require some traveling – I have to look at the protocol more in depth to see if it would be feasible… So that’s what has been going on, I guess I will have a better idea in 2 weeks where I am going with all this… In the mean time I will continue to rest and let my body recover and refuel for the next chapter… Thank you for all the love and support – sending my love to everyone.

Ugh! Time to switch things up… again…

Well it’s been a pretty good 5 months being on “maintenance chemo”. Since last December, I have been on a milder chemo regimen which I did on a 3 weeks “on” and 1 week “off” schedule. The side effects have been pretty manageable and we had the most amazing Spring break in Tahoe. We skied 5 days straight and had a wonderful time with our friends and new friends we met along the way. I am still so grateful for my friend Tish for so generously inviting us to her condo. This was such a needed family vacation but we couldn’t have afforded it without her. So there Tish, thank you so much! We are all so grateful for this incredible vacation we had!

12440282_1820835988143919_8812646217131975700_oI was back in the “chair” the day after we returned. My next step was to get a follow-up MRI to see the results of the ablation I had done a few weeks earlier. I once again had to fight my insurance company to get the scan approved (which is really taking a toll on me – but that’s a topic for another post!). Right before we left, my marker had gone up by 0.2 – I was able to put it out of my conscience for the duration of the trip, hoping that it was just “lab error” but knowing in the back of my mind that so far, this marker has always been spot on. I asked my oncologist if we could re-check it before my MRI follow-up with my IR so we could get an idea of where things were at. Well of course I wanted to know but I wish I had not seen it… It did continue to increase and it is now at the highest it has been since last August. I went to see my IR with this information in hand and not expecting to hear good news. So the scoop is that there are 4 spots on my liver that are re-activating. These are spots that were there before so they are not “new” lesions. They were just inactive at the time of my last PET scan. I was clearly told that maintenance chemo would stop working at some point but I was (and am) still unconditionally optimistic that maybe things could all die permanently and that I would/could be free. I really didn’t want to be in the situation that I am now, my options are really dwindling down. I have exhausted the 2 “big guns” chemo so there isn’t much left and the immunotherapy magic bullet is still not here.

I made a list of potential treatment options and sent it over to my GI oncologist at Shands. He is usually really good at responding promptly but it took a few days to hear back from him. I think he really took the time to review my scan with a radiologist and look at the different options. So here’s what we agreed on: 1) I will get the 4 spots on liver ablated with a microwave ablation. I guess one of the spots might be hard to get to, it is up high on the left lobe and apparently close to the diaphragm and if the latter gets burned it could cause a lot of pain. I have so much trust in my IR that I am very confident that he will be able to work his magic. 2) I will then move on to a newly approved chemo for those with colorectal cancer who have stopped responding to the standard chemos. This one is called Lonsurf and comes in a pill form so no more infusions. It obviously comes with its own set of side effects and the most troubling at this point is the hair loss. I know this probably sound really shallow and vain but I am so NOT ready to lose my hair a frickn 3rd time… I’ll have to find peace with this one but for now it is really hard to accept, hence the constant tears.   The goal of this plan is to “tread water” and hopefully keep things in check (stable) until the right trial opens up. There is one coming down the pipe, I emailed the pharm company hoping to have an idea of when their trial would start but they just sent me a generic response. My GI oncologist said he would try to find out more information. We are all waiting for the ASCO meeting in June where information about the new immunotherapy trials should be coming out and may help us figure which trial might be best for me.

So today I am kissing 5FU goodbye… I have been on this chemo for almost 2.5 years and it has kept me here this long… hoping that its little sister Lonsurf does the same thing because I want to keep surfing (and skiing!) for a long time…

The nuking of a tumor….

And here I thought that 2016 would be a lot smoother than 2015!

So much has happened in the last couple of weeks that it feels like months have gone by since my last post! We enjoyed an amazing trip to Quebec and got to spend some much needed quality time with my dad. He had been off treatments for a couple of weeks to give his body a break and was in the best physical shape that he had been in a long time. I still can’t believe that he came with us to the “Carnaval Parade” and that made being there even so much more special, as he used to take me every year as a little girl. I’ll probably write more about our trip but for now I will update on my most recent stint! To recap, in January, I noticed that my CEA (cancer marker) went up and I pulled the trigger pretty quickly and got in touch with my Shands oncologist, who in the end, agreed that it was good to act proactively. My thinking is that the more we can be ahead of the beast, the more chances we have at controlling it! In any case, a CT scan had not explained the rise in the marker and 2 doctors had recommended a PET scan. A CT scan helps us see “spots” but won’t tell you if there is cancerous activity within the spots. During a PET scan, you are injected with a radioactive substance very high in sugar which cancer cells thrive on. The dye lights up in areas where there is activity, where cancer cells are basically eating the sugar. My liver has many spots on it. As the tumors die sometimes they vanish and create holes that look like spots, sometimes they stay there, and sometime they calcify. So interpreting the results on my liver can be tricky. Well the results from the PET showed that there was only one remaining “hot spot” so one spot that was active. Now the question is could it be just “that” one spot that lead the CEA to rise? we have nothing to prove it but given that no other area showed activity we sure do hope so! I heard these results from my rockstar IR doctor Friday 6pm as we were getting ready to leave for our trip. I was so glad to get the results because I know myself and I would have been obsessing about the results during my whole trip! I am much better when I have a plan of action and know what my next steps are. Given both of our vacation, we planned on getting another more precise scan the Monday I returned and get the microwave ablation done on the Tuesday. I asked my doc if I would be “ok” to work the following Thursday and Friday and he said that I would be sore but would most likely be “ok”. Other than a couple of phone calls to set up some appointments, I was able to really forget about the whole thing while we were in Quebec. My insurance barked at the MRI but because of a snaffu on their end, my scan was approved late Friday afternoon and I was all set for Monday.

Being on a visa and going through immigration is always a trip for us. We had to take 3 planes home and the second one was delayed, leaving us less time than expected in Toronto where we had to go through immigration. We were told we had a 1.5 hour wait so they could review our new statuses… I told them I had cancer treatments the next morning and really needed to get home, our flight was boarding in 30 minutes! Well it worked!!! in 10 minutes we were in and out.. phew!

I had the MRI on Monday and brought my disc to my doctor so he would have access to the images before my procedure. Everything was lining up so we were all set for the procedure the next day. This is actually a procedure he could have performed in his office but my good insurance would not cover “in office procedures”, I guess they prefer to pay the astronomical hospital fees and try to save money elsewhere, like in denying PET scans and other procedures… makes sense right? Anyways, what I had done is called a microwave ablation where a needle is inserted directly into a tumor and it burns it through microwaves. My doctor was very happy with the results and said he had burnt it all! He warned me that I would have some pain as he had to burn close the capsule to make sure he would get it all – whatever, I was pretty drugged up after the procedure, I didn’t really care much about pain! Well let me tell you it was more than painful!!! I hate taking narcotics but broke down and took some but it did nothing for the pain. Even breathing was painful! It would take me 5 minutes to roll from my back to my side, I felt like any movement made my liver spasm. Finally on Sunday I contacted my doctor and he started me on steroids which should have been done right from the start but he told me that I had said that I didn’t want them. I asked my husband about this, telling him that I remembered telling my doctor I didn’t like narcotics but didn’t remember saying anything about steroids – my hubby bursted into laughter, apparently I had been pretty adamant about not wanting to take them! I met with my doctor yesterday who scanned my liver to make sure everything was fine and told him the story and he said “see I listen to my patients”!! I made him put in his notes to never listen to me while I was drugged up!!!! The funny thing though is that I also apparently told him that I could beat him down a black diamond (skiing)! Ahhh geeeeezzzzz what else did I say???? Anyways the scan showed that my liver was perfectly baked and the spot is looking exactly like it should. I have some expected inflammation between my rib cage and my liver (as the tumor was super close to the edge of the liver) so this is what is causing the issues breathing. The steroids are slowly working and everyday I am getting better! Well let’s keep our fingers crossed that is it for a long while – and let’s hope that it is indeed the very last spot!

Anyone up for liver tonight? hahaha….

 

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When it rains it doesn’t always pour!

Yikes! What a crazy couple of weeks!!!! So after my meeting at Shands, I got right on my PET scan. I left Shands without a referral for the scan but thought it would be fine to have my Interventional Radiologist (IR) put in the order as he would review it to see the status of the liver and decide if an ablation could be an option. His office put in the order but we needed to have my insurance approve it first. We unfortunately had to switch insurance and we now have Cigna (I am purposefully naming the company as I think it may be helpful for people having a choice in which insurance company they will pick). I totally freaked when I first heard we had to switch to this insurance company, as a provider, Cigna has been one of the most annoying company to work with. They would consistently deny my claims the first time I would send them in, probably hoping I would forget to resubmit them a second time in the time frame I had to bill. They would magically pay the 2nd time around but this was so much time consuming for me and a real pain in the butt. We had had the same insurance company for years and as much as I always joked about how they were probably looking forward for me to kick the bucket because my care was so expensive, never did they make me feel that way. They have always approved every scan, procedure, and surgery that my doctors recommended. They even had a nurse call me from time to time to make sure I was doing fine. BCBS has been great for us. So I was not really surprised to hear that Cigna denied my PET scan. I got on the phone with them, struggled to have them find me in their system as my last name was misspelled on my ID card and when that was finally taken care of, they forwarded me to MedSolutions, a company they hire to review their cases. Seriously, I feel like everyone I talked to was not very competent and just couldn’t care less about my plea to get this very important scan approved so that I could get the care that I needed. I called Shands to see if they could help and my doctor’s nurse called them up and told me that she was pretty confident they would approve the scan with all the information she had provided. I now had to wait the weekend and would be getting an answer by Monday 5pm. A week had gone by already and I was really trying to get this scan done before our trip to Quebec. At 4pm on Monday, I decided to call my friends at MedSolutions to have the verdict, feeling pretty optimistic that it had been approved. I was a bit shocked to hear that they had denied it a second time. I could file an appeal that they would review! I have no idea how long that process would have taken and I was determined to not have to go through this route. I was livid on the phone. I questioned the qualifications of the doctor who had reviewed my case and was told he was a radiation oncologist – a specialty I had never had to consult before as radiation is not an option in my case – so really what this doctor really know about my specific case? How could someone who doesn’t know me from crap can make such a decision when I have 2 doctors who have known me for more than 2 years say this is what is needed at this time. I was not asking for a facelift just to look younger, I was asking to be injected with a radioactive dye and then lie in a very uncomfortable position for 25 minutes to enable my doctors to see my insides! They obviously did not let me talk to their good doctor as their doctors don’t talk to “patients” (boy oh boy I am so glad that these are not my treating doctors!). I was so mad that I even told the person on the phone that I would send him a personal invitation to my funeral so that they can explain to my kids why this scan was not approved (thanks Dawn for the tip!). Even that didn’t phase him, I really feel like everyone I talked to couldn’t care less. So I bothered by GI Oncologist at Shands again. I feel badly that doctor’s who are busy seeing patients and actually saving lives have to take some time of their crazy schedules to deal with this BS but my amazing doc got on the phone with them the very next morning and magically the scan was approved! phew… I could breath again! So we were then Tuesday and we were leaving in 3 days! I called the center where I was going to have the scan to see if there was any chance I could get scanned by the end of the week. I had the authorization number from my insurance but I was told they could not book the scan until they received the confirmation fax from Cigna despite already having the authorization number! Back to calling Cigna to see if they could fax the form over… “it will be faxed before 5pm ma’am”. I called back the center, pleaded my case some more and was “penciled” in from Thursday afternoon! Another hurdle conquered. Then I got a call on Wednesday from the center informing me that their PET scan machine broke down, that they thought they would have it fixed in time for my scan but would know for sure in the morning! I couldn’t help laughing at my great luck with this scan!!! Well thankfully they fixed the machine and they had me come in just a little later that day and I had it done without any glitches! I asked for 2 discs, one for my IR and one for Shands. I immediately drove to my IR’s office to get him the scan and when I got there, they were closed for the rest of the day lol…. My hubby said they probably knew I was coming and decided to flee… hahaha! I texted my IR and made plans to drop it off in the morning. So Friday went by as I was desperately hoping to get a call from my IR. I did look at the images myself and only saw one spot on my liver but I couldn’t really interpret the rest… I still don’t understand how radiologists can make sense of these images! It was about 6pm when the phone rang and it was my Dr. D.!!!! I was so psyched to hear from him, I really wanted to know before I left. So here is the really good news: there is just one spot lighting up on my liver!!! This is pretty incredible given that I have been “just” on maintenance chemo for 2.5 months and my scan 3 months ago was showing 4 active spots!!! aaaaaand nothing else lit up! My IR put a little damper indicating that he wasn’t sure if that one spot was the cause of the rising CEA (cancer marker) but he then added “who knows it might be from the tumors dying” and I said I liked that hypothesis and he said he knew I would like it lol! Nothing like a doc that really gets you! So the plan of action is: another scan!!! this time it will be a MRI with contrast which will be a lot more precise for him to locate the tumor and be able to ablate it. I am hoping to get this (scan and ablation) done as soon as we return and we are trying to plan all this around my work schedule and before he leaves for a week. Now I hope Cigna will approve the scan without making us jump through hoops. So needless to say it has been a bit of a stressful two weeks but we are now on our way to Quebec where will get to forget about all this craziness for a little while!

There is a lesson here though: the sun always comes out, when it rains, it doesn’t always pour! patience paddlleboardgirl…. patience…

And the fun continues!

I hope everyone is off to a great new year! I sure am or was, I am not too sure yet! Well I guess I still am but the past week has been challenging emotionally, lots of tears were shed (my poor chiro picked up all the pieces and did a pretty good job at putting them back together!). I have been doing really really well since my back surgery. I had forgotten what it’s like to live without pain and once you are pain free, it is so easy to take it for granted and even forget what it is like to have pain. Some days I still pinch myself to remind myself that I can stand up without pain, that I can sit without a tennis ball under my knee and one in my back, that I don’t have that nagging feeling down my leg and that I can sleep so much better and in any position I want! I was really happy that 2015 ended, it was a pretty rough year medically that started and ended with a surgery and was filled with months of pain. At the same time, I think we really made the best out of it and we were still able to enjoy a little ski trip, spending time with my parents and in-laws who unconditionally and lovingly helped us throughout the year, until my father got ill and my mother-in-law had to deal with a cancer of her own. So yes, 2015 has been challenging but it also was a year of extreme growth for me. I am not ready to say that cancer was a gift but it has brought me many gifts, mainly in the way that I see and experience life at large.

I had my last Folfox and avastin infusion in November and since then I have been getting a weekly infusion that is considered “maintenance”. I opted to get the weekly infusions so as to not have the 46 hour take home infusion pump. There are pros and cons to each, at least when I had the pump, I had a whole week completely free of cancer but the pump was a big pain, just thinking about the constant rumbling sound and buzzing of it makes me shiver. As I said, I have been feeling really good. The holidays were the best that I have had in the past 3 years. I felt giddy most of the time, just enjoying the season and the fact that it was the last year that we had a “believer” in the house. January started on a really good note as well and I was very optimistic about staying “stable” on this regimen for a while. However, last Monday I had my infusion and as usual, I checked my CEA (cancer marker) the next day online. This marker has always been a good indicator of activity in the past. My doctor had once told me not to worry as long as it remained under 10 but in my case, we learned that as soon as it starts moving up, it means that things are reactivating. Before Christmas, it had continued to go down despite not being on the big chemo and I was thrilled. Last Tuesday, I optimistically and naively looked at my online chart to check the number, expecting it to still be under 2 but it made a 2.5 points jump… for me it is a big jump and I completely lost it! My GI oncologist had predicted it would go up but I was still hopeful that it wouldn’t right away… given my history with this marker, I decided to get right on it! I am so grateful for my GI oncologist’s assistant. I emailed her right away and she forwarded my email to my doctor who was out of town. He still responded to my email and after about 18 emails back and forth, I was set! We decided to move my scan up to see what was going on.

I probably could have waited until we checked my marker again again but that would have been another 2 weeks. Since we will be leaving on that following weekend for our trip to Quebec City and knowing my self – leaving knowing that something might be brewing but not knowing what, would have been pure torture and would have prevented me from enjoying my trip fully. If there is something I need to know, I would rather know now and devise a plan of action. Even if I don’t start until we come back at least in my head it will be “classified”. The unknown is so unsettling and one thing I for sure still am grieving, is the loss of innocence, just being able to live life without feeling that this Sword of Damocles is hanging right above my head. Waking up every morning never wondering how much longer I will be here, planning for the future, and not being worried about which way my health will go in the next days, weeks, and months. This is still hard to accept.

The main reason why I reacted so strongly and so emotionally is that after my first Folfox treatment, I remained “stable” for 8 months just on maintenance and so I did have high expectations. It’s a fine line between having hope and having expectations. I know some people don’t believe in hope but I do. I am very hopeful that immunotherapy is going to have a major breakthrough soon. I am hopeful that I can be stable until it happens but I guess “expecting it” is what makes you fall from high when things don’t happen the way you “expect” them. I was feeling so well and I was so hopeful/expecting to be well for a few months that I even applied for a program for cancer patients to volunteer in India. There were amazingly a few spots open for a trip in March and I thought it would be a perfect timing. I really thought I had a few months ahead of me to live life more normally. Given the uncertainty, I had to back out and this was a big blow… I will keep the hope alive that I might be able to do this trip in the future.

So to bring you all up to speed, I was able to get a last minute CT scan done on Friday. My amazing interventional radiologist met with me on a Saturday (yes you read that right!) to go over the results, I feel so lucky and so grateful to have him on my team. Basically he said the lungs were stable and he could see some improvement in my liver! So I left feeling like it was great news but couldn’t completely shake off the idea that there might something else going on somewhere else that he had not looked at. I drove to Gainesville today, a total of 6 hours to meet with my other amazing doc, thankfully he had an opening today! He had not been able to see the images but I shared what my IR had said. I apologized for maybe having pulled the trigger too early but told him that I would prefer to be silly rather than sorry! He totally agreed with me, I guess he knows me enough by now and knows my case (sometimes I think better than my local guy) and said that it was the right thing to do as my marker has always been spot on. He was happy to hear about the lungs and liver but like me worried that there might be something else. The number one recommendation (which is what my IR had also said) is to get a PET scan to see where there is activity – we think there are spots on the liver “misbehaving” as my oncologist would say. If it is only a few spots and if they are well located we will zap them with a radiofrequency ablation (RFA). If there is something else somewhere else we will start a new chemo regimen. I got a message from him when I got home that he had been able to look at the images and that he had looked everywhere else and couldn’t see anything funky so this is another good news! At least I know there is no new spots that could be seen on a CT. So the plan is to get this PET scan this week or next week and have it reviewed by my IR so he can decide if he can zap the hot spots. We also discussed clinical trials but he still wants me to hold off a little while longer.  A few new studies just recently opened up but he described it as a “feeding frenzy” with many pharm companies competing to find the right combo for colorectal cancer with my type of mutations. He wants to start seeing results before I jump in – and he said I still had time… so this is it folks – the continual ups and downs, as I said before it’s the constant roller coaster ride! I’ll update when I have more results and a definite plan. I am so glad to have amazing doctors invested in me and all of you supporting me through this journey! The picture is of my GI oncologist at Shands, I really don’t know what I would do without him (and his assistant Patty!!!) Thanks Dr. G!!!

Time for a little update!

Taking a little break from my elf on the shelf shenanigans (for those following his journey on my facebook!). There is a lot going on these days to say the least! We all know how December is crazy busy with all the Holiday preparations. Throw in the mix a back surgery AND a last minute trip to New-York – perfect recipe for insanity!!!! So to explain what is going on, let me start with the back surgery. I had initially made an appointment with a neurosurgeon at Shands but given his reputation, he was not able to see me for the initial consult until December 21st (so surgery would not have been scheduled before somewhere in January). I decided to meet with two local back doctors who had come highly recommended. With the help of some “contacts”, I was able to get earlier appointments and as a fluke ended up seeing them both on the same day. I really liked them both and they both said that this type of surgery was basically pretty routine for them. I had told my husband that if they said they could do this procedure with their eyes closed then I would it get it done locally. Jokingly they both said they could do the surgery with their eyes closed but promised they would keep them open! The pain has been pretty bad and not improving so I decided I wanted to get the procedure done sooner rather than later…. One of the local doctor’s even said that I must a “tough girl” walking around with this level of disc herniation. This is what the problem is, a herniated disc with a fragment pressing on my nerve, hence the leg pain. I hear the leg pain should be gone soon after the procedure so I am pretty excited about that and from what I gather, the recovery should be pretty smooth. I had not realized that this would be done under general anesthesia but what choice do I have? So as I was getting ready for the surgery, I received a call last week from Mount Sinai in NY about the fruit fly study. I guess they have enough tumor sample to run their tests and this makes me eligible for the study. This means that I need to go back to sign the consent form. I was warned that this would be the case the first time I met with them, I still tried to plead my case with the back surgery being right around the corner but was told it was “study protocol” and did not have the choice if I wanted to be in the study, I had to come sign the consent form in person.

I was actually scheduled for chemo this morning and am leaving late afternoon for NY. I met with my oncologist and tried to see if the infusion could be speeded up since I am a bit on a tight schedule but it turned out that my platelets had tanked again and we made the executive decision to skip this week’s infusion so as to not jeopardize my surgery. I was so psyched to leave there without having the infusion!!! I know this is short and sweet but thought I would post this little update. Lots going on this week and I would love all the prayers, positive thoughts and energy, all the good vibes and mojo and all that good stuff in lieu of flowers! Thanks for all your support and love – I will post an update later this week!

New-York here I come!