A Very Unbirthday to B

Hello again Family and Friends. Both B and I apologize for not updating the blog sooner but we have been pretty tired and have held off until we had all the new info at hand.....and at last we do. So to start off B's birthday was this past Monday. And unfortunately it was less than a happy one. First off B has not been feeling great..shocking right? It is almost a joke to even talk about the pain issue. I have nothing to say except enough already! The radiation is really kicking his butt and his pain remains very very high. B is currently having 4 spots radiated this time. One on his sternum, one on his back right rib, one on his right hip/groin, and one on his left hip. And with 4 spots being zapped with each treatment, it takes what seems to be forever at the radiation oncology department. And Monday is B's longest working day. He starts every Monday before 8 am. He holds office hours all day, followed up by an hour long radiation treatment, and then off to class, only to return home after 9. As you can imagine Mondays sucks. However this particular Monday was particularly bad because his radiation treatment ran over, making B late for his Monday class.....the class in which he was scheduled to administer a test. And low and behold, B tried to reach me via my crackberry, and of course, surprise surprise my phone was dead. B had hoped to reach me so that I could give him a hand and take the tests down to class to get things going, but he was unable to reach me. So by the time I got the message he was home. My crackberry was so dead that in the upper right corner the phone read radio off. What a joke. After returning home, the at home RN Sarah felt compelled to stop by for a long visit with B. She happened to arrive right as I had just warmed up dinner. So B had to sit with her, during her extended visit, and watch his burrito get colder and colder, while thinking about how hungry he was, and how much he wanted her to leave. Sarah has a knack of dragging each appointment out and she always comments on how high his blood pressure is. I mean I understand where she is coming from because B's blood pressure is high, but it has been this high for months, which can only be credited to his long lasting pain and all the drugs he is on, added with the stress of life and you end up with a high BP...understandable!! Monday ended terribly, and as they would say it in Alice in Wonderland - Happy Unbirthday to B! We have never been happier to have a day end.

And now comes Wednesday. Wednesday started off pretty horrible too. I happened to knock B's pain pump onto the bathroom floor. This is not something that takes 6 foot falls very lightly (the thing weighs at least 3 lbs and is zipped in this black fanny pack B has to carry around daily - because it's attached to his aorta) and within minutes the pump was making funny noises before shutting down. So this little accident cost B 4 hours of being without his morphine. Not something we hoped to have happen during a time in which B is having some of his highest pain attacks. I felt terrible and it was an accident, just a costly accident at that. So after the delivery of a new pump, B and I had a date with Dr. # 4. This is an appointment we' ve been waiting for. During this appointment we found out that Dr. # 4 had spoken with the latest Dr. who was introduced into the mix as a second opinion. We will name this Dr., Dr. # 14. Dr. # 14 spoke with Dr. # 4 for some time about the newest plan for B's care. Dr. # 14 comes highly recommended from Karmanos Cancer Center in the Detroit area. Dr. # 14 specializes in gastric/esophageal cancer, which is the direction Dr. # 4 was leaning in terms of treating B's cancer. Since the caner has spread again, both Dr's agree that it is time again to change B's chemo. So starting a week from next Wednesday, B will again begin Chemo. This is a chemo that will be administered every 2 weeks, however the good news is that Dr. # 4 said that the infusion could be delivered all in 1 sitting....translation, goodbye chemo fanny pack. How delightful! There was also mention of giving B a shot, which would help deal with bone pain, however we are going to hold off with the shot and see if radiation works. We are hopeful that the radiation will work since B had responded quite well to radiation in the past. I guess you could say that we have a lot invested in this round of radiation. B has said that he has reached his breaking point in terms of the pain. He can't and won't take much more. Radiation wraps up this Thursday, however he finished up with 3 of the spots this past Thursday. I guess it's too soon to say whether the radiation has worked or not, however, in the next few weeks we should have a good read on what is going on.

It has been a long and hard few days, mixed with many emotions, ranging from sad, mad, angry, and confused. So this weekend brings much rest and relaxation. We both intend to spend some time with our nieces and nephew and we intend to have a happy birthday dinner with the my fam clan this weekend. Might I add we did get to spend some time with the B fam clan last weekend to formally celebrate B's birthday as well. We can only imagine what it is that B wished for this birthday, however I think we all have a pretty good idea.

And lastly B got himself a new whip. He has been rocking out a new green and black walker. That's right, folks! B finally broke down and got himself a bad ass walker. It has many cool features, one being a cool seat which he uses to take breaks during his long campus walks. As you can imagine, his walking has gotten pretty hard and he needs all the help he can get, so bring on the walker. It doesn't do much for his self image, but who cares anymore at this point. If people don't understand they can kiss off.

Once again, Go Green and thank you football Gods for the ass kicking that the Spartans handed to the Wolverines. It was a great weekend being a Sparty....just had to give a shout out to my beloved Spartans and Kirk Cousins!! Good luck this weekend at Homecoming with the Illini!!

Mixed Reviews

Hello again to our loyal blog followers. First off, let me apologize for not posting sooner. There is a lot to explain and instead of writing a blog following our Wednesday appointment and scans, I figured I would wait until we had all the information at hand. And at long last - we do.

So as some of you know, B had an appointment on Wednesday with Dr. # 4 for a standard follow up and for what we thought was a normal chemo appointment. We actually thought that we were going to meet with Dr. # 4, start chemo, get a scan, get scan results, meet with Dr. # 4 again. However, this plan/schedule was way off. So B and I started off Wednesday by meeting with Dr. # 4. B explained to Dr. # 4 that he again is having terrible terrible pain in his chest, in his back, and in his right and left hip. B and I also explained that we met with the Dr. # 11 some time last week and that he wanted to get a CAT scan done so he could take a better look at what is going on in the pelvis and hip. Dr. # 4 agreed that it was again time to get a CAT scan done and he finished the appointment and sent us into the chemo area where we met with Tammy, the oncology RN, and waited for the itinerary for the day. Tammy was gone for a pretty long time and finally looped back to inform us that Chemo was again canceled for the day. Not due to any low blood counts, but due to the fact that Dr. # 4 wanted to see what the scan had to show before doing chemo again. So in an instant the day was turned upside down - another wasted 2+ hour car ride for DBone!! B was scheduled for a scan that afternoon and they were going to do a wet read....meaning we would find out the same day the results of the test. Holy shit, excuse my language, but holy shit was that ever nerve-racking. Please tell me how one is supposed to focus on work knowing that you are going to find out the results of a cancer scan that afternoon? Needless to say, I went back to work with nothing but prayers being recited mentally all day long.

B had his scan at 2 pm at the cancer center and then he and DBone headed home to wait for the call. 'The call' was scheduled to come around 5, so I was planning to take off around 4:30 to get home in time to hear the news with B and DBone. However, the call come in around 4:15 and I didn't make it home in time to hear the news with B. So instead I got a call at work where B informed me that the cancer had spread. Talk about a gut wrenching feeling. I mean it when I say this is the closest I have come to passing out in my life. I was seeing stars and had to sit down in the back office. I put my head on the desk, cried, got myself together, grabbed the lunch I didn't eat, and headed home. I think I drove 100 on 131 S, and I didn't care if I got pulled over or not...my only focus was getting home. B was surprisingly calm. He said he knew all along with all the pain he was having that there had to be cancerous spots there. And he was right!!!! I can almost guarantee if B is complaining of horrendous pain that cancer is lurking in the cracks, or is hanging out just around the corner. It is just frustrating because B had been complaining of pain in his chest for 2 months (although he did really think it was related to the puke thing), but they kept down-playing his symptoms, too, thinking that the pain was just from the vomiting experience., as well. Both DBone and I wanted to punch someone for not listening. But in the Dr.'s defense, the spots are really small. Looking back at the scans that they did in July, the Dr.'s and Radiologists are coming to recognize that B had cancer in his sternum all along. So to everyone out there who thought that B and I were crazy about the pain he was describing, we were NOT!!!!!!!!!!!!. He was so right, so right all along. And the pain is paralyzing, and B is again getting stuck on the couch or in the bed because he no longer has the strength to lift himself because of the extreme pain he has in the sternum....not cool.....not cool at all. Dude's like a doormat when he gets flat...although he can balance a mean jar of salsa on his belly ;) That's my B!

The scans also showed 2 new spots on his back-one on his upper right side on a rib and one on his left hip. And believe it or not, B has been complaining of pain in the lower left back and hip, and I am all sure that you are shocked to hear that he has spots there too....right? I guess you could say that B knows his own body better than anyone else. Dr. # 4, however said that the spread of the cancer is very very slow and that the lung lesion is the exact same size, that the neck, which was previously treated with radiation, is better, and that the right hip is better too. So Dr. # 4 described the cancer as having mild progression. However, since the cancer is still spreading they are going to have to change B's chemo again. Dr. # 4 said that up until this point he was treating B with a chemo that was targeted for colon cancer and he is thinking of changing course to more of an upper GI cancer. We are also considering another second opinion - just to get some fresh eyes. It is not that we don't trust Dr. # 4, because he is good at what he does, it is just that a fresh set of eyes in the mix might help in finding a missing clue, or not, or coming up with a new idea, or not. But it can't hurt the situation - that is for sure. So I guess you could say this week has been pretty hard to swallow. I have cried a fair share, as has B. It's just hard to understand how all of this could happen.

So in terms of treatment....B is again going to undergo radiation to kill those new spots and to treat the pain. Dr. # 4 as well as Auntie R and her Oncology Dr. Friend, agree that the most important thing to do at this point is to treat the pain. And by
radiating these troublesome spots, it is the hope that the pain will subside and those little spots will die and go away. And Dr. # 4 said it would be really dangerous to do chemo and radiation at the same time, so B is getting a 2-3 week break (really like 4-5 since he didn't have it last or this week) from Chemo. I guess both radiation and chemo at the same time could cause a dangerous drop in blood counts and with the cold season approaching Dr. # 4 wants to side on the error of caution. B is gladly embracing this break. The chemo is really starting to take a toll on his body, so a break is just what he needs. Of course we are going to again re-visit chemo in the next few weeks, and by that time Dr. # 4 will have a great and more directed game plan in mind. For now B is scheduled to meet with the Radiation Oncology Team again this Monday and we're confident we'll have more direction and a more outlined plan of attack. Game on! And might I add that B is looking forward to earning another certificate for graduating from radiation boot camp.

As for now we just request prayers for both B and I as well as our families who are also struggling with the latest news. This is obviously a set back (small, and we actually left yesterday's appointment happy with the discussions and outlooks) but B is strong and it is what it is at this point. Every day together is a blessing and I am thankful to be able to help B beat the crap out of this cancer. Thanks again for stopping by, and as we get more info we'll work hard to get the info out there. Go State and enjoy the first fall weekend!!

The Ugly Truth

B and I have been flying around in a holding pattern for what seems like years....more like 6 months, but I think that we are close to landing on the ground so to speak. The Dr.'s are finally getting some of the answers we have been waiting months for.

This past week B was scheduled for his MRI and CT scan. Actually both tests were moved up because B is in so much pain. So the truth comes out. The truth of the matter is that B is living in extreme daily pain. The pain is so bad that I really can't think of a time in the past 2 months where B was not rubbing his neck or leg, icing his neck or leg, heating his neck or leg, or moaning at any given point throughout every single day. The pain really starts to eat at you, and I would say that B and I are starting to crack up. Sure we do things to feel normal, like going to movies, or hanging out with family and friends, but the truth is the pain is still there. B lives by the clock and is constantly watching the hours until the next time he can take his non-working pain meds. B has a pill for everything, but the trouble is nothing helps with the pain. I know that it is best for the mental health to get out and do things but it is hard.....really, really hard! I guess the alternative is to crawl in bed and pull a blanket over my head and cry, but that is not going to do any of us any good. Everyone thinks that I am so strong, but I am really sensitive and there is not a day that I don't cry, so I guess my secret is out. It is terrible to see the person in the world that you have given your heart to suffer so much and not be able to help. Plain and simple B and I are living in hell! A perfect example is on Friday. B and I got a brand new Subaru Forester, exciting right? Well the man selling us the car said "Isn't this exciting, getting a new car", and neither B or I answered. The Ugly Truth is that nothing but your health matters, and when it is being threatened nothing really makes you happy. B is really suffering and it is not fair, so there is your ugly truth.

Now back to the matter at hand.....the scans came back and it appears that the lung tumor is about the same size. Dr # 3 said that the tumors on B's pelvis and L4 appear to be more spiral which could indicate that B is responding to treatment....I guess the spots look hollow so that is a good sign. Dr # 3 also said however that the spots on the neck appear to be marginally worse. The lesion has spread to the muscle belly on the right side, which is the reason that B is having additional neck pain. Dr # 3 recommended radiation of the neck and he hopes that this helps to kill the little bastards. He mentioned giving B a stronger dose this time around since B did not respond great to radiation in his hip. B is scheduled for 13 treatments and they start next week. Let's hope that radiation works this time around. So on Friday B completed the prep work, including getting his face cast with a mask, so that radiation can start on Monday.

We also got the results back from Cali, and I am sure you all want to know what is going on, but we still really don't know. We have not heard from Dr # 4 yet so we are just going to have to wait and see. The results are interesting, but we are not the ones to interpret them. Boy would I have things really messed up if I tried to figure out what the tests really said. There is a chance that Dr. # 4 may change B's chemo drugs based on these results, but again, we won't know until we talk to Dr # 4.

For now we are just going to continue on fighting. I am sure that these next few months are going to be pretty hard since B is having Chemo and radiation. This will likely knock B on his ass, but he is tough and he will get back up and continue on. We are making the best of the situation. We did spend some time this past weekend with friends and we were able to golf our first round of 18 this summer. And I might add that I holed out for a dirty birdie, pretty bad ass. We also visited the red neck yacht club and took the Party Barge out for a trip around Lincoln Lake, courtesy of Captain Morgan, I mean Captain Don Jr. Like I said...trying to make the best of the situation.

Hope everyone is enjoying the beautiful holiday weekend. Come back for more info later this week.

Round 3

This week started pretty quite, however we knew that we were in for a long week, since this was a chemo week. D-Bone came in again for her regular 6 night stay at Hotel Muttz. And for the first time, she was able to sleep in the true guest bedroom, while we stayed upstairs in the Master Suite.

Tuesday started with our regular follow up appointment with Dr. # 4 before chemo treatment. The Dr. explained that today he was going to introduce a new chemo drug to the mix. This particular drug is very important but has not been used up to this point because it was dangerous to B before and after surgery. B was officially cleared and Avastin was officially added! Avastin works by blocking the formation of new blood vessels which in turn interferes with the growth of the tumours.....bada boom bada bing. Dr. # 4 also explained that we may change treatment again pending the results from Cali....we will get to that!!!!

Dr. # 4 also expressed that it might be beneficial for B to have some radiation in his neck. The neck is really killing B again and during the appointment I voiced concern about the neck and Dr. # 4 seemed to agree. B is scheduled for an MRI and CT scan this next week and the results from these tests will determine what will be done next. B also had an appointment on Friday with Dr. # 3 where they discussed what might be done with radiation. Dr. # 3 said that he will most likely schedule B for 15 treatments however, since B did not react very well the first time around, he will likely give him a stronger dose to kill those little leasons in the back and neck. So we go back to meet with Dr. # 3 again this Friday and we will develop a plan from there.

And now to address the Cali issue.....my blood pressue is already rising just typing this. So as you all know we have been waiting on a pathology report from Cali since B's surgery, almost 6 weeks ago. And as a recap, these results determine source tumor and directly deterrmine the medicine that B receives during each chemo. So at our appointment this week with Dr. # 4 the results were STILL not in. Auntie R started doing some digging late last week, and we found out that the tissue sample was never send. That is right the Beaumont pathology department never sent the sample. I was so upset when I got this message that I could not even say words when I called my mom at work. I would have used the F word, but that did not even begin to touch how ticked off I was. Does this person at Beaumont not realize that they are direclty affecting someone's life....no lie!!!! And to make matters worse they tried to blame it on the Cali lab, saying something to the effect that they needed a special kit to ship the sample in. Well I called Cali myself, and Beaumont did not need this special kit for 1, and if Beaumont did request the kit, it is shipped next day air. So bottom line, we should have had these results a long long long time ago. Both B and I were very very disappointed. It just seems that things never come easy for us. We were told that we should have the results early this week, and Dr. # 4 and his staff have been calling every day. The problem is there is not way to put a rush on the test....it takes 5 days no matter what!

Alright enough with the Debbie Downer stuff and onto the positives....Chemo was not as bad this time around, however the side effects were again different. B was very sore and is still not feeling great. Usually the chemo side effects are done and over with by Saturday morning, however they are lingering this time around and B can't seem to get comfortable. The pain seems to come and go so this weekend we worked around the med schedule and we were able to go to a movie, and even golfed 9 on Sunday. All and all things are looking up, and seeing B on the golf course made my heart swell. B is the strongest person I know. He has suffered so much through all of this, but he really is not letting cancer knock him down. Everyone can stand to learn a little something from B that is for sure.

I will keep up with the updates and thanks for stopping by.