This Little Piggy Went to the Market

This week B had his routine follow up appointment with Dr. # 8. B and I packed up the car and Dog Wednesday night and headed out on a road trip to trusty D-town. The appointment was to find out how B was doing and if his leg had healed from the gigantic surgery. I must say, this was the best Dr. appointment B has had to date. Dr. # 8 reported that B is doing great, and that my days of Driving Mr. Daisy are coming to an end. All hip restrictions/precautions were officially lifted and B is well on his way to the golf course. The Dr. was shocked at how much strength B had and how well the x-ray looked. She also couldn't believe that B came to the appointment without crutches or a cane....typical BMuttz form, pushing the limits right to the edge. As a matter of fact, Dr. # 8 also took B off Coumadin.....another bonus....cha ching!!!!!
So as a reward B and I went car shopping. Living in the Big City without a car, easy peasy, however living in Grand Rapids without a car, huge pain in the ass. Time for an upgrade.

We also got some new information on the genetic testing. No dice. It turns out that B tested negative for the genetic mutation so he is not eligible for Tarceva, or the second drug that is about to come to market. So Chemo is the treatment path that B will continue to follow. Dr. # 4 said that we should not feel disappointment and we should feel OK about where we are. The ways things turned out, the first two Chemo treatment were not a waste so to speak. Dr. # 4 is still waiting on the test from Cali which will tell us more information about the source of the cancer. The Chemo drugs will reflect what we hear from Cali, but regardless we know that we chose the right course....thanks Auntie R. So it looks like B is going to be sporting the new bald look for a bit longer.

B is scheduled for a 3rd round of chemo this Tuesday and we hope to have the info from Cali by then. By Tuesday night we should know exactly what we are fighting and all of our questions answered. We're pretty sure that Dr. # 4 will be scanning B after this next treatment to get a read on how the chemo's working. This comes at a good time since B is having terrible neck pain again....grrrrrr.





We wrapped up our week with a visit to our local Farmer's Market. We're trying to eat better. Figure that it can't hurt the cause, and there is nothing better then fresh Michigan produce. B walked the entire time and it was really nice getting out in the sun. We also took a drive to Greenville for dinner with the redneck clan. Just getting out of the city helps to clear the mind and helped to prepare us for the upcoming week of hell.





Finally, B and I would like to proudly announce that we are officially night time residents of our bedroom once again. This time it's official and we'll be up there for good. No impending surgeries, operations, or anything else can keep us from the pillow top mattress. We briefly moved back in upstairs before the surgery but new that it was only until the surgery. The pull out Ikea couch in the living room was fine and helped make for a nice living room/bedroom combo, but we'll take a living AND a bedroom, thank you very much! More news to follow.

One foot in front of the other

B and I are taking the approach of one foot in front of the other. After our meeting at U of M, we had some of our darkest days. As you know, I was feeling very sick and on Sunday B came down with what we thought was the flu. I called the on-call Dr. who said that it would be best to take him to the ER. That was the last thing that I wanted to do and had a feeling it would end up being a crazy trip...nothing more crazy than our cousin's trip to the ER for gas...HAHA....you know who you are, but crazy nonetheless. B couldn't sit still, he was sweating, had the goose bumps and developed a mild case of OCD-like behavior.

We decided to weather the storm but it was a long day...followed by a few more very long days. This could not have come at a worse time, and B really thought that he was dying. I think Katy Perry best describes how B felt....hot then cold, yes then no, very little up, but lots of downs. It was so bad that I stayed home from work on Monday to rest, take a trip to the Dr. for myself, and hang out with B. We went out to lunch, and it was a train wreck....except right before the part where we were derailed, we were miraculously saved with 3 free cupcakes!

I guess the random acts of kindness are helping us get thorough this tough time. Actually, the day we got the worse news...last Friday...we stopped at Dairy Queen to get something to relieve our minds. As I walked in, I was crying...baby tears, but obviously distraught. The lady in front of me noticed and asked me what was up....actually, her words were, "your man givin' you trouble, baby?" Of course, I replied yes...ain't that the truth. I filled her in on the cancer and the recent Dr visits, and out of nowhere she gave me a huge hug and I ended up getting 3 free blizzards out of the deal. The guy behind the counter overheard the conversation so he threw some coupons my way. I guess that cancer does have an upside.

Anyways, back to the sickness. It was only until late last night that we figured out what was going on with B. B decided that it would be a good idea to go off his meds...at what pace, was unbeknown to me. As of last week, B was taking between 25-28 pills a day. On Saturday, he decided to go off his meds cold turkey. B's symptoms matched that of a 14 year crack addict. He had class A withdrawal. And believe it or not, Momma Nanc was the first to mention this and I completely ignored the advice...thinking Nanc was just throwing stuff out there and hoping something stuck. It was only until DBone mentioned it last night to B that we figured out B was not dying, it was merely a case of withdrawal. So, he went back on some of the meds, and will slowly ween off of them. After a day of doing this, his optimism is back where it was when this started and he feels 100% better. And my cold/respiratory infection is feeling better, too.

As for the appointment this week, things went a bit better. Dr. #4 was much more optimistic. He told us that we have to find a balance of hope with realism. He said that nothing about B's case is normal so there is no way to make a clinical diagnosis for this case. Dr. #4 said that the stats are very scary and that Dr # 7 gave us correct info, however we need to have hope. If you look online, which we try not to do, the numbers are not great. But, then again, you won't find many 28 year olds who have this diagnosis. So, what does that mean?! Dr # 4 mentioned that the amount of cancer in B's lung is very small. Most of the tumor is cystic and that there is hardly any cancer in the lung. Most of the cancer is in the leg and they have already treated that. Speaking of which, B is getting more relief there, too. We've been sleeping in our bed the last few nights, he can lay on his good side now for a full night (which he couldn't do until last week), and he can lay on his bad side for a few minutes at a time. He's still on crutches, but we know we're only a matter of weeks away from him being able to walk on his own.

Back to Dr. #4. We discussed taking phosphonates (bone-strengthening meds) to strengthen the hip, and we are going to couple those with a multi-vitamin. Dr. # 4 also agrees with the treatment options, and we are now just waiting to find out about the genetic mutation. If that comes back positive, which would be ideal, B will start taking Tarceva as early as next week. If it comes back negative, then chemo will be the course. No matter the course, we're just anxious to get started on some treatment.

Back to something I mentioned above...B and I were able to sleep in our bed the last couple nights. These were the first times in over two months, and I almost cried. Yes, I'm an easy crier. But, seriously, we've been in our basement every night for the last two months. I was so out of the 'bed routine', that yesterday I overslept my alarm and could barely get out of bed. Regardless, it is so nice to be in the bed again. And we're not the only one's to enjoy it! Gato and Perro
could not be happier either. We had a huge party in the bed...so that is progress. B's leg is feeling better, and with each day comes a small amount of relief. B is also no longer bleeding when he goes # 2...another small, no this is a large, victory! It seems like we are getting things in check and are settling onto our new path.


B has a brain MRI today and that marks the last test on tap. Dr. #4 said this is more of a formality, and he doesn't expect to see anything, and in fact, he said he 'would be shocked' if there was anything, but it needs to be done so we can be certain. Things are looking up, finally!



Also, thanks again for all your comments and shared stories. You guys have been great, and all the encouraging success stories help us get through the rough patches. We know B will be lecturing on survival soon enough, and your stories are giving us the hope and power of prayer to get to that point. Thank you!

Updates

This week ended with our appointment at U of M. It all started early Friday morning when we woke up, packed the car, and bid farewell to gato and perro. We headed out on our mission to meet with Dr. # 7 to finally get some answers to the many questions we have. We met B's Auntie R, who, lucky for us is a Dr. herself, and brings a calming sense that always makes us feel better in wake of any bad news that we have received up to this point. Not to mention she knows what questions to ask and what the answers mean.

U of M is a very nice facility and B checked in and received the fancy 'blue card', which we were told was of utmost importance to keep with us at all times, and we were on our way to meet with Dr. #7. We were put into a room and waited for quite a bit of time before meeting with said Dr. #7. We first met with his PA Lindsay....even spells it the same way, so I thought that maybe today would be our day. We brought her up to speed on everything that was going on since the start of the diagnosis, and then she started to talk about treating B. It was not sounding great and both B and I had blank stares on our faces. I preceded to tell her that we have yet to receive any info on the stage and grade of the cancer or the prognosis. She said she would be sure to pass that info onto Dr. #7, and he would be in soon to answer any questions and give us a better read on what we are dealing with.

We waited again for some time before the mighty Dr. #7 came in. He was very nice, but very direct. Which, considering all the sugar-coating we've gotten the last couple months, was fine with us. He explained to all 3 of us that B's cancer was stage IV. He said that the cancer is stage IV because the tumor has left the place of origin and has traveled to a different place in the body...his hip. He said that at this point taking out the tumor would make no difference on the outcome or prognosis. He said the "damage is done", so to speak, and if they did take the tumor out that it would likely come back. He said that there is a very good chance that other areas of B's body are infected with cancer, but the cells are very microscopic and will most likely show up at some point. So, even if we took out the lung tumor, which was Dr. #4's intention, there was no reason to believe that would cure everything.

Both B and I were expecting much different news. I guess I had the expectation that they would just take the tumor out and chemo him and that we would be on our way. Dr. #7 then told us that the cancer is treatable but not curable. I guess you could say that at this point of the appointment I blacked out. I actually had to leave the room, but thank goodness Auntie R was there to take in all the clinical info. Dr. #7 said that B is not in a great place right now. He hopes that we will be able to treat the cancer with Tarceva, a new drug that is used in patients with this stage and type of cancer. The Dr. is hopeful and said that patients have had some good response to this drug. In one particular patient the drug has worked to shrink the tumor and manage the cancer from spreading to other places in the body for seven years...and it is still working to date. Instead of the usual two month check-ups, that patient is now only visiting the Dr. on a bi-yearly basis.

We hope that B has the same result to this treatment, but we have a few more tests to undergo to make sure that he is a good candidate.....a brain scan and a check of the tissue in the hip tumor to make sure his tumor has two types of genetic mutations. Dr. speak for 'if there's nothing in the brain and there's two types of reactions with the sample tissue, we can proceed with this new drug -- instead of chemo." The advantage of this new drug would be reduced and less extreme side effects than chemo. B could also continue being 'normal', meaning he could travel, work, play, etc...instead of being glued to the toilet, couch and floor. As B said, though, even if he is ineligible for the new drug, chemo isn't a bad 2nd option. We all know the benefits that has had on someone close to us.

If B has to do chemo, it would run in three week cycles for six treatments. After two months, B would follow up to see if he is responding to the treatments. It is our hope that B beats this thing...one way or another. Like Auntie R said...B isn't a statistic, HE'S B, and nothing about this is normal so what we need to do is wait and see. We have options, and we are going to try everything we can...and B is super tough, that's why I married him.

So we need to pray that B can start taking some medicine...and soon. At this point, we don't really care about his hip. B would rather focus on beating this then worrying about the hip. I think his exact words were, 'F the hip. If I have to be on crutches for the rest of my life that's fine with me...as long as I can live."

To be honest, these past few days have been really really hard. We both have broken down many different times. I am so worried about B, but find hope in thinking of my grandma, who was given a similar diagnosis many years ago... and her cancer went away and she lived on with her life. I know there is a plan and this is just a journey that we are on together. Unfortunately, we are both sick....I have a respiratory infection and today B woke up with the flu...we think. We need a break, and I have a feeling that something good is about to happen.

I wish there was a way to make this blog funny, but there was nothing funny about our Friday appointment and there has been nothing funny since. Sorry for the lack of humor this time, we just had to get the info out there because we know a lot of you have been waiting to hear how it went Friday. I wish we had better news, or a better prognosis. However, we're still confident that everything will return to semi-normal. We're still optimistic the radiation will do its job and help return B to normal use of his leg. Our feeling is that if he can begin walking and moving around without the crutches, we can start to, at least, feel normal again. Until next time, keep hope alive, keep praying, and keep sharing stories of hope. There's no way to thank all of our readers for the strength and encouragement and support you all provide. But just know we are very thankful, and we appreciate your love. Thank you!