Plan for the Future

It has now been over 2 weeks and B and I are still posting up here on 5 south. This week we faced many hard decisions. Following our shocking news on Saturday, B and I had to play a long game of hurry up and wait. It is a fact that not much happens in the hospital over the weekend so we had many questions that we wanted answered, but we had to wait for Monday, when everyone came back to work.

So first things first, we met with Dr. # 4 and he again explained to us that the cancer had spread quite a bit in the spine. He reported that a large amount of the spread is in the lumbar spine, but that many other areas of the spine are also affected. Dr. # 4 presented many scenarios, leaving us with a tough decision. He explained that with B having severe pain, he could recommend radiation to the most problematic spots. The problem is there are too many spots in the spine to radiate them all. So we could pick and choose which ones to radiate and go from there. Dr. # 4 said that radiation is simply for pain management and will not help in treating/controlling/preventing the cancer from spreading. Radiation is not cancer preventing but is strictly used for pain management. Dr. # 4 also presented scenario number 2, where we would start chemo this week. The chemo we hope will work in treating the cancer, preventing further spread, and effectively shrink the tumors (providing some relief). However Dr. # 4 said that there is no guarantee that B is going to feel better in terms of his pain and that the chemo may make him feel worse. And then there is scenario numbero 3, where we start chemo, and return to radiation later, or maybe somewhere in between chemo treatments. We simply can't do both at the same time....to risky for B's health.

This obliviously is the hardest decision we've had to make, and there are pros and cons to all 3 situations. After much deliberation with Dr.'s and family, we decided to move forward with the chemo. The new chemo will be a chemo directed at treating upper GI cancer and B starts treatment here in the hospital tomorrow. Chemo is going to run every week and will continue for 2 months, at which point they will rescan B and figure out if we are on the right track. Dr. # 4 feels this is a good decision, and like he said B can always revisit radiation later, so fingers crossed that this chemo works.

In addition B is feeling much better and has seemed to shake the C Diff. The antiobiotics seemed to have done their job and we hope to never, and I mean never, meet Mr. C Diff again. Dr. # 12 and 15 continue to work together to dial in the right mix of pain meds, and at this time they have adjusted the rate and amount of meds in his catheter 3 times. Dr. # 15 wants to be sure we are taking things slow since the prialt aka snail poison can have major hallucinogen effects. We have to make sure that B is not hearing voices and that he is accepting this amount of prialt appropriately. So far so good.

As for getting the hell out of here, not sure. We asked Dr. # 4 his feelings on getting B home and he said that right now B is too unstable to leave the hospital. He feels that B needs to be monitored closely and he feels that if we head home, we will most likely end up right back here on 5 south. So if you need us you know where to find us.

Lastly, the staff is working hard to get B more mobile. He pretty much has been in bed for the past 2 weeks and as a result he has developed 2 bed sores. They are stage 1, but still very very painful. The RN's are keeping a close eye on things and are trying hard to move him around every few hours. It is our goal to get B out of bed 3 times a day. We don't need any more problems at this point, that is for sure.

I promise to update as we learn more. Thanks again for the support and prayers.

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!!

The Holiday Weekend

Well folks....I'm back, or for this blog anyway....yes it is I, LMuttz. So this weekend turned out to be a pretty quiet weekend around the Casa de Muttz. Unfortunately, B had chemo again this week and the side effects seemed to have slipped into the long holiday weekend. I guess you could say it is good for B that he has a few extra days to recover since he is not feeling too hot.

For whatever reason, the chemo really seems to effect B's pain levels. His shoulder, as well as his right hip, are really hurting and as a result we haven't done much this weekend. To make matters worse, B ends up feeling like he is holding me hostage because I end up hanging with him here in the dungeon, aka the original 'Master Suite'. So he wants me to ask for some ideas of what to do alone in Grand Rapids for a few hours here and there, while he is stuck in what I will dub "C" mode. So my followers.... suggest away. And don't get me wrong, I know how to hit up the local shops and how to get myself a nice mani/pedi....and for my closest freinds....you guys would not believe how long my nails are. Just ask Senora Kiss, who has witnessed the nail transformation over the last 6 months. They are long and strong and shockingly fabulous. And when it comes to shopping, I have that down so I am looking for alternative ideas of what to do around town. However, for the record, I enjoy hanging out with B doing 'nothing' (read: watching mad amounts of TV/DVR recordings and movies), and I think that maybe B really just wants me out of the house.....I can take a hint, hombre. I mean, who doesn't enjoy hanging out all day in PJ pants after a long P90X workout? I personally enjoy doing nothing very very much, as do the trusty dog and cat. You will never catch our dog, lazy bones, complaining about a day of rest. Our perro lives for that stuff!

B and I did get to see my Bro and one of our nieces on Saturday, and we also went out to a local hot spot for some delicious tapas....thank you very much San Chez! It is just that both B and I are getting pretty sick of him feeling sick. After all, it has been 6 months since he started chemo, and we have another 3 ahead. We often ask for God to heal just 1 thing. It's not like we are asking for everything to just go away, but if just the arm, or just the leg would feel better, we could both get a little bit of B back. I know that often times we try to be upbeat on the blog, however B still struggles every day. Just carrying his computer bag and walking to class is a struggle. He often times says he feels like an 80 year old man, and I don't blame him. So much has been taken away, and we just hope that with each passing day he is able to get an inch back.

Anyways, B heads back to work again on Wednesday and we are hopeful that by then he is back to feeling OK. We promise to keep you all in the loop. Looks like we have a busy fall on tap...with the Jewish Holidays, a few MSU football games, some tailgating, a trip to Chicago, and of course our Cruise!! So it appears that we are going to be busy, but busy is good for the soul and spirit! And after the Cruise, not much planned except a brand new semester for Professor Muttz.

Thanks again for stopping by and we hope that everyone was able to enjoy the extra day off.

And for all you celebrating this week, toot your Shofars and have a very Happy New Year and enjoy your apples and honey!

The Exorcist

As the saying goes, all good things must come to an end, and they certainly did. B and I came off one of the best weekends we have had in some time, and headed into Chemo week. The week began as they always do, with Chemo on Tuesday, and the pump out on Thursday. Of course, trusty D Bone and Bear's Uncle Larry came back to G-Rap to help out, and thank goodness for that.

We learned early on that B's blood counts were pretty low, which meant that B was going to have to get the Neulasta shot; the same thing he got pre-surgery. Neulasta works by reducing the chance of B getting an infection, and off-sets some of the meds that B is receiving. Some of the Chemo meds lower B's neutrophil counts, which is key to fighting infections, so the Neulasta helps with all of this. B was also due for his Zometa shot....the bone strengthening med, but this makes B really sore, so we knew we were in for a less-than-pleasant week(ish).

Tuesday ended pretty uneventfully, and we , in fact B ate the biggest meal I've seen him eat in awhile. We shoulda known what to expect as we moved forward into Wednesday. Boy were we in store for a crazy day! Wednesday started bad, and started bad very early. I got up for work around 6 and by 6:30, B was already out of bed puking his brains out. What most you don't have the luxury of knowing, is that B is an aggressive puker. The best I can describe, is that B is the Exorcist when it comes to getting sick. Just ask Team J what happened to their shower curtain on New Years Day 2009. And by 8 am, B had already lost his cookies 4 times. This continued on for much of the day, leaving B without eating much again, and leaving me very worried. On top of everything, B began complaining of sharp pain on the left side of his chest. B had been hurling so hard, he convinced himself he had broken a rib!

On Thursday, D Bone took B back to the Cancer Center to get his pump out, to get his Neulasta shot, and to get fluids. I never expected to receive the call that I did at 3:30 on Thursday. I had just left the office to go and see a patient in the hospital, and my phone rang. The caller ID showed that D Bone was calling, and I was going to let the phone go to voice mall since I was already on the 7th floor in the hospital, but I decided last minute to take the call. However, it was not D Bone, but B. And since having radiation, B's voice is much softer and it was a bit hard to understand. B told me that they were rushing him to ER because the staff had concern that he had a blood clot in this lung. I think I almost passed out. I was totally shocked and very scared. I literally ran the entire way back and hauled ass to the ER. I got there just as they were checking B in. He looked like shit. He was all slouched over in the wheel chair, and was so pale. It was like he was fading right before our eyes, and he was scared....you could see it in his eyes and all over his face. B and I spent most of the night at the hospital. They ran several tests and did a full CT scan of the chest to determine that B didn't have blood clot.....thank goodness. They did say that most likely B caused trauma to the left side of his chest while he was puking these last few days. I was so relieved, but the whole episode was very very scary. They didn't confirm it was a broken rib or not, but suggested it was more of a muscle strain....still, B is seriously limited in his range of motion with his left arm!

B and I came home and went right to bed. And by Friday, B was feeling a bit better. The rest of the weekend has been quiet, too. B has done quite a bit of sleeping, and still has had a few puking episodes. Not to mention his left side is still killing him, making it hard for him to walk with his cane. I swear, Team Mutnick can't seem to catch a break and I am getting tired of thinking when we actually might get one. Not much on tap for next week except rest and relaxation, and we need it.

Thanks for all your support!! It definitely gets trying at times, but knowing that all of you know a break is on the way helps us take each day that much easier. We love you all, and look forward to many happy visits in the near future!!

Celebrate Good Times...As Best You Can

This past weekend B and I attended our first wedding of the year, and the first wedding since our wedding last August. It was truly a wonderful day. B and I got to meet the parents of our dear friend Mrs. Lips, and we got to share in the wedding of Team J. The weather was beautiful, the bride was beautiful, and the band was rocking, and I had B there by my side.

I have come to realize that drinking makes me very very emotional, so as a precaution and to prevent a scene, I decided to lay off the booze. I had nightmares that I might get out of control....it's happened in the past so I played it safe and stuck to H20. I have to be honest, there were times when it was hard. Usually B is the life of the party, showing off his moves on the dance floor, and busting out a chair dance that you swear was choreographed by Paula herself, but this wedding was different....B was sidelined and it was hard. However that being said we made the best of it, and celebrated good times with some of our closest friends. Hell, we went to the wedding and had a good time, and B even busted out a dance or two with his cane! And don't worry I was there by his side to block any drunk bastards from knocking him over.

And so we stayed the night in St.Joe and headed back to GR on Sunday for some family time. It was nice seeing the Homrich Clan and we got to wish Big D and the rest of the family a face to face happy father's day. And so the weekend ended on a high note bringing us into what has now been dubbed HELL WEEK.

This week started with chemo on Tuesday. B and I woke up early on Tuesday because we had to get to the cancer center for B to get his port put in. This was a procedure that we thought took 15 minutes....think again!!!!!!! B was in the outpatient surgery center for about 3 hours....the staff forgot to mention that the prep for the procedure takes an hour, the procedure itself takes an hour, and the recovery takes an hour. So I was running back and forth all morning long checking on him and making sure that everything was OK. Neither D Bone or I knew that the procedure was going to be this involved so our morning was chaos, and B got a late start on his chemo. All and all B was at the cancer center for over 10 hours on Tuesday....are you frickin kidding me?!? And don't forget his daily radiation treatment. I just don't know how much more my husband can take. It makes me sick. We did meet with Dr. # 4 again.....we meet with him every 2 weeks. Dr. # 4 is hopeful that his new chemo begins to work in killing the cancer. If this happens we will stay the course with this treatment. We will have a better read on this following a scan, which will be scheduled in 2 months or so. Dr. # 4 seemed pleased so far with the new chemo and tends to think that B is feeling a better...other than the right leg. B is scheduled for an MRI of his spine tomorrow and we hope that Dr. # 11 can be our real life "HOUSE" and get to the bottom of this leg pain.

B had radiation again on Wednesday and then had to be back to the cancer center again today to have his portable chemo pack removed. He is so tired and that is understandable. I am tired thinking about it, and I honestly have no idea how we keep the appointments straight. Wednesday, however marked B's last radiation treatment, and thank goodness for that. B's throat is so burned that he is having a hard time eating or drinking anything. He has to force himself to eat, and it such a struggle that he is passing on meals all together. This was to be expected and it is our hope that the radiation works this time around.

The end of the week is winding down and so are B's appointments. And we have a very quiet weekend on tap, which we need. Please keep us in your prayers....we need them. More updates to follow.

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.

Play -By-Play: Diary Style

This past week was good and bad....I guess at this point, that's to be expected. Here's a day-by-day snap shot:

Dear Journal:
Today is Monday. It marked the last day of teaching for B, and he was quite emotional since this was his 1st class at GVSU. Teaching has proved a true testament to B's character. Since all of this cancer stuff started, B only missed 2 classes (and only 1 of those was canceled...thanks in large part to Prof. Whitehead). 1 class because he started chemo (class was the actual day of treatment) and 1 class because of surgery (I don't think he could make it the day after being knocked out for 4 hours to get a piece of metal put in his leg). B actually got in a fight with me about starting chemo and how it conflicted with his class. He was going to delay treatment so that he could teach....ridiculous right?....but that is B. He planned the discharge from the hospital around teaching, and so he went to class on Monday, and walked to each desk to personally hand out the final. He actually did it and was determined not to let cancer get in the way. He said that teaching helped him get through this difficult time, and because of his determination he was offered a summer position.

The visiting RN also came by to do a blood draw and routine check-up. She said his blood was too thin; so they adjusted his Coumadin dose, and all is well in the world of blood coagulation.

Dear Beloved Notepad:
Today, Tuesday, was a big day...B and I had our follow up appointment with Dr # 4. There was a chance that we would find out today more info about B's cancer and what treatment plan we would be following. However, Dr. #4 is still waiting on the genetic testing results to come in, so for now we are still riding the chemo train...chooo chooo. B had first class tickets today for another 6 hour love session with the chemo IV bags. Dr # 4 had very positive comments to offer and said that he thinks we made the right decision to have the surgery and that a large part of cancer is gone and that B should be walking soon. Dr # 4 also said that the sciatica is a small setback in the big scheme of things, and we can expect it to wear away slowly but surely. D Bone came in again to support B during his 6 hour train ride. I stopped by for lunch, and there sat B...grading exams. He set a goal of getting through half of his grading by the end of the day, and he did just that. He also had a dose of bone strengthening medicine, and then he and D Bone were on their way home. Dr. # 4 also said he would call us with any new info....so we are waiting again.

Dear Permanent Listener:
This was such a busy day. I knew that B was going to be tired by the time I got home from work, and that's understandable since he had 3 appointments today...geez!!! D Bone and B were off to visit Dr. McDreamy, aka Dr. # 10, before 9 am. Not much went down except for a boost in nerve pills. Later that morning, the PT came over and massaged B's entire leg. The hope is to get the muscles that haven't been used since December back into gear. B literally has no right butt cheek...the PT confirmed this...telling us how his gluteus maximus and minimus are completely atrophied (the muscles are there but haven't been used in a long time, so they are sleeping, so to speak). B's right butt cheek looks like it has been hit over and over with a frying pan. Anywho, the goal with the massage is to wake the muscles up and help get B out of bed so that he is walking and can wake the sleeping giant....hahahah.

Later in the afternoon, after some much needed rest, or complaining to D Bone about how much pain he was in, B had his last appointment of the day. B had to go back to the cancer center for a shot of Neulasta....boosting the white blood cell count. Dr. # 4 said that this would help to prevent infection, and trust me we don't need any infection here! And just like that, Wednesday was in the books.

Dearest Chronicles:
Is it the weekend yet? Just kidding, B was really looking forward to Thursday because it was staple removal day. The RN came by and plucked all 25 of the wound closing metal teeth. We had been looking forward to this day for awhile now. The wound looks great and is covered with steri-strips. However, after staple removal, the day began to slowly go downhill. B's pain seemed uncontrollable and he was beginning to get the sweats. By the time I got home from work, we knew that chemo side effects round 2 were in full blast. Is it time for bed yet? Nevermind, even that sucks on chemo side effect day.


Book of Secrets:
Today we knew S was about to hit the fan. We just didn't know what type of S it would be, and unfortunately for our plastic bag collection, it came in the form of nausea. All day B had the sweats, D Bone was constantly filling glass of Vernor's and B was trying to nibble on as many Saltines as he could get down. When I got home from work, B still hadn't thrown up but his condition was not any better.

We convinced D Bone that we had everything under control and that she could go home with Larry and could take care of her regular business. No more than 20 minutes after she got on the road, the nausea took over. I would like to think that I am a good supporter for B's illnesses, but when it comes to the porcelain prayer session, I got no stomach for it!! Picture this...B bending over the trash can and me running out of the room dry-heaving. Bear didn't know which of us to tend to. What a way to start the weekend!

Dear Diary, It's Me, L:
The sun is starting to creep through. After a slow start to the morning, I was finally able to get B off the bed and out the door. Literally. We set a goal to have B walk to the corner and back, mind you we're the 3rd house on the block, but nonetheless, he did it! He still had the crutches with him and used them most of the time, but he did take a few steps holding the crutches off the ground. I can't remember a time when Bear had a bigger smile on her face. It was probably the shortest walk of her life, but even she was happy to see B out of the house.

After the walk, the sweaty beast showered, and I'm talking about B. Then he convinced me he was ready to take a trip to Target with me. It ended up being a bit long for B, but he was still more than willing and able to take a trip to the golf store after. B was in his element and nothing makes him happier then getting new golf gear.

B was a bit sad to not see the Trusty Rombones in action at the Diamond Dust. With the way Friday went, there was no way of knowing what today would bring, and if going to Chicago would even be possible. Team Mom is sorry we couldn't make it guys, but we'll do our best to see the Rombones in action at least once this summer; that comes with a Team Mom GUARANTEE!

All in all, this week showed some positive signs of moving on from the hip replacement. We are looking forward to the summer and our days on the golf course. We know it is going to be a long journey, but with each day comes more progress.

The 1st day of the road to recovery

A ton has happened since the last update so I am going to lay it out here. Today, as many of you know, marked day number 1 of chemo for B. D Bone has been in town since Saturday and took B to treatment. Today started very early, with a 7 am wake up call for everyone...well everyone but B. He was already up because he never quite fell asleep last night. B had to be to Lemmen Holton by 8 am and they got things underway right away.

B started the day with a special drip of Zomata, which is the drug used to make the bone in B's hip super strong. The down side, of course, is that it makes B's body ache, which builds to the problem at hand....B is super sore already in both the hip and the neck. That drip was followed up by 2 different anti-nausea drugs. These first 3 bags took about 1.5 hours. Then came the all important chemo drips. I guess you could say that we have been looking forward to starting the chemo since it means that the drugs in the chemo IV are working to kill the cancer cells in B's body and to prevent/control further spread. That makes me feel much better....get that shit out of there already! B's chemo drips were super long...the first was more than 3 hours and the second was about 1 hour 15 minutes. Not to mention all the saline shots in between...and the 2 morphine shots to help B get comfortable.

We packed a bag to keep the day interesting......cards, sudoku, backgammon, and books. B and D Bone were in a private room with a bed and a TV so that B could rest, if he needed, and since we are not getting much sleep these days we thought that the bed would be a great benefit. With my office being so close, I just walked through the tunnel and stopped over for a visit on my lunch hour. D Bone and B were playing cards, and D Bone was quick to let me know that she was kicking B's ass in a friendly game of gin....love it! They were also watching HGTV, also love it! As D Bone said, it was a nice day with her son, just terrible circumstances, but we have to make good moments out of the bad these days. And B didn't seem to mind it too much, either. Even though at one point he had 3 different tubes hooked into his arm. Good thing that kid has the easiest veins EVER! Dr. #4 even said B didn't need the usual chemo port because it's so easy for B to give blood and take infusions.

We all enjoyed a lunch and then we returned back to the private room. I was a bit out of routine today and had a hard time pushing the IV at a good pace. I forget that B is on crutches so I pushed the IV way too fast and damn near pulled the line out of B's arm....I did not have my normal A game today and felt bad all day not being there with him. Not to mention when we got back to the room B was resting comfortably and I decided to sit on the bed with him and landed right on the control that operates the bed. This error caused B's leg to shift and he yelled out....again not on my A game. So day numero uno is almost done and we still don't quite know what we have in store. The staff did say that B is going to be sore from the chemo too, and he probably will lose the hair, but big deal. Let's just hope he doesn't react too bad to the drugs.

In addition to starting chemo today, there was some other big news from an appointment on Monday with Dr # 4. He decided that we needed to move into a full court press approach. He said that we were going to start chemo this week, and then have surgery on the hip next week. You heard it right, the surgery is back on!! Dr # 4 wants to be aggressive, and until B has the hip surgery he will not be walking and will continue to be in terrible pain. Dr. # 4 thinks that chemo will be much more difficult if B is not walking, so surgery is back on. B's having surgery next week...Wednesday in D Town. It is going to be pretty major, but the good news is that he will be weight bearing that same day. Surgery will be somewhere around 5-8 hours, and he'll be in the hospital for about a week or so. The hope is that B will be walking by June....I could almost cry thinking about that. Dr. # 4 said that there is obvious concern because the disease has progressed, but he did follow that up by saying that we aren't sure what is going to happen since this is our first attack on the cancer. He said that B could respond to the chemo and that this could work to control things...so let's just hope that we get a break these next few months.

After the surgery and recovery we're back home to GR for the second round of chemo. This next month or so it going to be hell, but we got this. We Got This!!! Dr. # 4 also hopes to be able to use the tissue from the hip for the genetic testing, and hopefully, by treatment number 3, we should have a good read on what we are dealing with and if we need to make any changes in treatment.

It's going to be a rough road and we need all the prayers and positive energy we can get. Thanks again for all the support and for keeping the blog alive.

Bald is Sexy!

The last time we filled ya'll in, we were certain that a hip replacement was on the schedule. Well, it still is.....just a little later than we first had anticipated. Yesterday, B had an MRI on his neck. Because of the pain he was describing, we were all pretty certain that it was nothing more than a terrible neck 'sprain' or stiff neck....after all, he has been sleeping on 1 side for the last 3-4 weeks.

Well, we got the MRI results back late yesterday afternoon, and it appears there are some small spots in B's neck. We don't know where they spread from, but we do know that means the tumor is spreading, and we have to get at it quick.

So, the official treatment plan has finally been finalized. B will start chemo on Tuesday. He'll get 2 drugs instead of the original plan of 3. The one that is being left out has something to do with blood vessels, and if they gave that to B, surgery would be out of the question for a long while.


The plan is to have B do 2 rounds of this chemo treatment...1 infusion every 3 weeks. This should stop the spreading and kill any of the small spread that's taken place up to now (i.e. neck and hip). After the 6 weeks are up, B will have another CT scan or MRI and we'll see if the drugs did their job. If everything looks good, then B can have the hip surgery.

Dr. #4 is pretty certain that the chemo won't damage the tissue in B's hip. That means that when B goes under the knife for the hip replacement, Dr. #8 should still be able to get enough good tissue for the tests. The test results will help us treat the whole cancer on a more specific regimen, i.e. chemo with specific drugs or Tarceva or some other drug. Considering we still aren't certain on the source, those tests of the hip tissue will tell us a lot....when we get there.

In the meantime, we're both happy B will finally be getting some systemic treatment. It seems like it's been forever since the original diagnosis, and this whole time we've been doing nothing to stop or kill the cancer. So, yes, it sucks that we are forced into playing the chemo card, but we're relieved that something is finally going to get done.

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!