Some good days, some bad but hanging in there!

It's been awhile since I posted anything so I will try to review the last 2 weeks now.

We went to MD Anderson for Marc's chemotherapy as scheduled but when we got there Marc was having such severe abdominal pain that they sent us to the emergency room for evaluation. After 24 hours there with lab, X-ray and CT scans they decided that Marc's problem was severe constipation. I know, we always knew he was full of it but now we have proof! The repeat CT scan did not even mention the umbilical hernia! While in ER it took 2 doses of IV dilaudid (a powerful pain medication) to relieve his pain. They discharged us at 9:30 the next morning and scheduled Marc to get chemo that afternoon at 5pm. They also gave Marc a prescription for morphine tablets to help with the pain. When they got ready to start the chemo, Marc's blood pressure was extremely high. Because the one of the side effects of the chemo is elevated blood pressure, they would not start the chemo until his BP was down. They had to call the nurse practitioner to come up to see him and gave him medication to bring down the BP. After 2 hours his BP had gone down enough to start the chemo. He tolerated the chemotherapy well and finished up a little after 10pm. So after leaving at 6pm on Sunday for an early Monday morning dose of chemotherapy we finally got home at midnight on Tuesday morning. We were both exhausted to say the least.

After we got home we started aggressively working on resolving the problem with constipation. It has not been pleasant for Marc and he is still having episodes of severe pain. But the episodes are getting fewer and further apart and less severe. They no longer bring him to tears but he still gets very uncomfortable. He has been a trooper through it all. The morphine was not controlling the pain so the Dr. prescribed a fentanyl patch which he changes every 72 hours and he takes the morphine for breakthrough pain.

The good news is that his speech has improved a little since getting the chemo. We were told that the chemo would decrease the inflammation in his brain and the improved speech is proof that this is happening. We are also starting to reduce his steroid dosage and hope to get down to 4mg of dexamethasone a day as a maintenance dose. I've now got him down to 8mg a day now with no troublesome side effects. That is very encouraging.

We return for the second dose of chemotherapy this Monday and are hoping that this trip to MD Anderson will be uneventful. Marc is now scheduled for his consult for the insertion of the portacath on August 21. They also scheduled him to have lab drawn that day so I don't know if they will do the procedure when we are there or schedule us to go back at a later date for the insertion. I am hoping that they can get everything done while we are there.

As you can see from the pictures, Marc still has his wonderful since of humor. He loves life and loves his family and we love him dearly. It is so difficult to see him suffer and we pray every day that the suffering will stop and he will heal.

I have returned to work 2 1/2 days a week now and have hired a home caregiver to stay with Marc while I am gone. They are very expensive so Steve is staying with Marc one day a week to give me a break in the expense. He is able to work from home so he works while he is here. Marc isn't thrilled about the home caregiver but does enjoy spending the time with Steve.

I will try to post more later this week after Marc's chemo is completed. I apologize to not posting regularly and will try to do better in the future.

MRI results lead to new treatment plan

We finally got the MRI results. Overall, compared to the last MRI done at MD Anderson, the MRI shows a little improvement, the area they have been watching is slightly smaller. That said, Marc's oncologist wants Marc to start IV chemotherapy. He will receive the chemo every two weeks. Because the MRI cannot rule out new tumor growth (the only way to do that is surgery which is not an option at this point) and there are new areas of inflammation the oncologist wants to start Marc on the 'Big Gun" treatment protocol. The drug used is called Avastin. It is used for many other types of tumor but has shown some success with glioblastoma. The major side effects of the drug are bleeding and/or clotting, and the other listed side effects include but are not limited to: dry mouth, cough, voice changes, loss of appetite, diarrhea, vomiting, constipation, mouth sores, nausea and headache. I just hope that Marc is able to tolerate the medication without any significant problems.

Marc will need a portacath insertion for the chemotherapy administration, however there is a waiting list for this procedure so we don't know when he will have that done. In the meantime, the dosage will be given through a regular IV. I just hope the IV team is as good as everything else at MDA is.

The good thing with the Avastin, it decreases inflammation so we will be able to decrease the steroid dosage some. Due to the severe problems that Marc has had each time the steroids were discontinued I am going to insist that we find the lowest possible dose to keep Marc on and not discontinue them. Decreasing the steroids should help some with the insomnia. I am praying it does because neither Marc, or me for that matter, just don't function well on 1 to 3 hours of sleep a night. I am going to try to start back to work again the first part of August and need to have adequate rest to perform my job duties. My work has been so good to me but I just cannot continue to be off work. I have put my coworkers in a bind by not being able to be at work when scheduled and it is not fair to them. I have contacted a home care agency and contracted with them to have a companion come to the house to stay with Marc while I am working. The problem is that it is very expensive, so I can't afford full-time home care. Steve is going to stay one day a week with Marc as he can work at home and can do his work from our home.

Marc continues to have the diffuse abdominal pain. His primary provider wants him to have a surgical consult but doesn't think surgery is a good option. The other problem is that with the new chemotherapy, surgical procedures are contraindicated for 28 days after receiving the Avastin.

I will continue to update the bog and let you all know how Marc tolerates the new treatment. Please continue to keep Marc in your prayers.

Test results . . .

We did get about a half inch of rain after I posted the last blog. We are in need of much more but do appreciate what we got!

Marc had a restless weekend. The effects of the steroids are beginning to appear again and take their toll. He doesn't sleep much at all now, maybe an hour or two here and there. He has taken to walking around the cul-de-sac in the middle of the night, sometimes two or three times between 10 and 5. So far tonight we have been out 3 times and it's only 2:30! He is using the walker when he takes these journeys but is a little unsteady in his gait so I join him. His lower legs and feet are beginning to swell some but not yet to the extent they have in the past. The only good thing is that his appetite has improved some. He seems to be in limbo with his speech and there has been little or no improvement since his discharge from the hospital. He still gets speech therapy twice a week as well as occupational and physical therapy.

The abdominal pain has not improved but he is managing to cope, only if he takes the pain medication regularly and even then it seems to only numb the pain a bit. The CT scan results were normal with an "incidental finding of a fat containing umbilical hernia". His PCP wants him to see a surgeon. I am afraid that a surgery at this time might be too much for him but Marc told me that it needed to "get fixed". At this point he is so ready to be pain free he will do just about anything to obtain relief. It is so difficult to see him suffer. It just breaks my heart to watch him try to get through the day, but he just keeps on going. He is such a fighter. I think there is no braver person in the world.

The MRI results are still pending. I called first thing this morning but haven't heard anything yet. We are both anxious to get the results. I will post something as soon as we hear something. Marc has another appointment with the oncologist next Tuesday, I just hope we hear something before then.

Status Update

As some of you know, for the last 2 months or so Marc has been plagued with intermittent, diffuse abdominal pain. It was difficult to assess as Marc couldn't verbalize the nature of the pain but just draw a line with his hand around his waist and back when asked to pinpoint the pain. The pain became more severe the last few days and I was finally able to get him in to the Dr. when he was having the pain. Always before I would tell the Drs. about it but when evaluated he wasn't having pain so they just chucked it up to gas, constipation, diet, etc. The last time he was hospitalized he even had an X-ray of his abdomen with negative results. When he was evaluated yesterday, the Dr. found a good sized umbilical hernia and recommended a CT scan of the abdomen to rule out any other pathology. He needed labs first to evaluate his kidney function before the radiologists would do the CT scan. Because we already had an appointment for a MRI at MD Anderson the next day (today) and he would have lab drawn there prior to the MRI the Dr. thought it was acceptable to wait and use the labs from there and do the CT early next week. Anyway, that was the plan when we left the Drs. office yesterday afternoon.

Well last evening and night the pain became more severe and constant. I put in a call the the nurse practitioner at MD Anderson early this morning to see if the CT scan could be done when he was there for the MRI. It was late in the morning before she got back to me. In the meantime I called his Dr. and was told to take Marc to the ER for evaluation. I agreed and by the time I got dressed and ready to go Marc had made up his mind that he was not going to the ER because he did not want to miss the MRI. I called the Drs. office back and they were able to schedule a CT to be done at 1pm today. We jumped in the car and went directly to Conroe where the CT was scheduled as a prep must be done 2 hours before the CT.

Marc was so uncomfortable, even with pain medication and a sedative that he asked that I be allowed to stay in the room with him while the CT was done. Once he was settled on the table we did some relaxation breathing and he was able to make it through the exam. After the exam we waited for 30 minutes for them to run a CD of the procedure so that if we had to go to the ER over the weekend I would have the disc and the test would not need to be repeated. We were cutting it pretty short because our appointment at MD Anderson was scheduled for 3pm. At 2:30 the clerk told me the system rebooted and they had to start the process of transferring the images again and it would be at least an hour before the disc would be ready. I made arrangements for Julie to pick up the disc later today and we headed to the Medical Center.

Poor Marc was miserable. We stopped by the house and got him a pain pill for the trip into Houston and he settled in for the ride. Our first stop at MD Anderson is always the lab, fortunately their phleblotomists are excellent as Marc has no veins left. Then it was time to give Marc more sedative so that he could make it through the MRI. He never used to be claustrophobic, but the frequent MRIs have done him in. By the time they got his IV started he was more relaxed and the pain had decreased a little. He again requested that I go in with him for the MRI. What an experience. I had never had an MRI nor been present in the room when one was being done. The opening in the machine is just big enough to squeeze Marc in. His arms are up on his chest and they place thin rubber pads on his sides so the arms are held up and don't rub on the sides. Ear plugs are placed in his ears (I am also given a set to use). A mask is placed over his face and the table he is lying on moves into the circular opening. There is just enough room for him to breathe without his chest and abdomen rubbing on the opening. Then the MRI starts - the noise is unbelievably loud, rumbling and pounding. The table even seems to vibrate from the sound. The test lasts about 25 minutes and he is expected to lie perfectly still the entire time. I now understand why he gets so anxious.

We are home now and will not have any results until Monday or Tuesday on either test. Marc is still very uncomfortable, he tried going to bed but was not able to get comfortable. He is now in his recliner and just started snoring. I am praying that he is able to sleep through the night and that we can manage the pain over the weekend; if not we will go to the ER .

I will post an update after we get the results of the tests. In the meantime, the weatherman gave us a 60% chance of rain tomorrow and we are hoping that he is right. I never thought I would wish for a rainy weekend but it has been so dry for so long we really need the rain. We wish you all a wonderful weekend.

In Limbo again!!!

A lot has happened since the last post. I have been so wrapped up in caring for Marc and arranging appointments and therapy I just haven't gotten to posting on Marc's progress.

After the last post Marc just started going down hill. He had more right sided weakness and had more difficulty participating in physical, speech and occupational therapy at the rehab facility. He didn't want to do anything but stay in bed. He wasn't eating. He became dehydrated and was given IV fluids. He seemed to perk up a little on Saturday when his sister and youngest brother came from Kansas for a visit but later that afternoon he got back into bed. His breathing became labored and is color changed to a dusky gray. He would not respond to me at all, even to painful stimuli. I was afraid that he was dying.

He was promptly transferred back to Memorial Hermann The Woodlands by ambulance. He was again evaluated and admitted.The first 2 days there he was in bed and didn't want to eat or drink. His brother and wife from Canyon Lake came to visit, so all of Marc's sibling with the exception of his oldest brother were here visiting him. I am a little foggy about everything that happened the next couple of days. Long story short, after multiple tests his EEG was "slow overall", the neurologist thought it might be from a postictal state from the seizure he had had the day before. His MRI was read as showing new tumor growth and an order was written for a neurosurgery consult. The neurosurgeon came in wanting to schedule surgery. I told him no, that I wanted to consult with Marc's oncologist at MD Anderson before anything was done. He promptly wrote an order discharging Marc from his service stating the family prefers treatment at MD Anderson. MD Anderson had no available beds at that time so we stayed where we were.

Marc seemed to perk up and was up walking in the hall the next day. He was doing so well that I asked that he be discharged to home and told them that I would make arrangements to see Marc's oncologist. The admitting Dr. agreed and wrote orders for discharge and home health evaluation in order to continue the therapy at home. He was discharged on Tuesday.

I scheduled an appointment for Tuesday, July 7 at MD Anderson. The oncologist pulled up the last 2 MRIs and reviewed the differences. The latest MRI showed some inflammation or tumor growth around the cavity of the original tumor and a small amount of growth on the area that they had been watching. He started telling us the options, one being a repeat surgery. I asked if they would insert more glial wafers if surgery is necessary. It was as if the light bulb turned on! The oncologist said that the inflammation surrounding the original cavity very well may be caused from the effects of the wafers and not from new tumor growth. He went on to say that they do not use the wafers at MD Anderson because the swelling that they cause makes it difficult to tell if the tumor has returned. He recommended a specialized MRI using the necrosis protocol which could help tell if the area was new tumor, dead tissue or just inflammation. He also recommended that Marc see the neurosurgeon just to discuss the possibility of surgery. He also said that he would probably change Marc's chemotherapy if we opted not to have the surgery. There are 2 options for chemo, the first is the 'big gun', is IV and given every 2 weeks. He said it works 70% of the time but that if the tumor does grow back the tumor is usually much more aggressive. The other chemo is a combination of 2 different drugs taken orally and daily. These drugs were used prior to Temador being used for first line treatment.

We saw the neurosurgeon on Thursday. He started the conversation stating that he wasn't going to recommend surgery at this time but wanted us to be aware of the possible complications if surgery was necessary. The most concerning complication is that the tumor is in the area that controls motor function and surgery could possibly cause paralysis. He stated that he was in agreement that the MRI be done before we determine the method of treatment.

I got a call last evening from the oncologist's nurse who said that the MRI had to be approved by radiology and that the radiologist who read the last MRI didn't feel that there was enough change to warrant the specialized MRI. He recommended a repeat MRI in 4 weeks. So now we are waiting again as the oncologist and neurosurgeon are discussing Marc's case and trying to determine what they think the best option is.

This whole process is trying our patience and is very frustrating. I work in the system and knew that there were always many roadblocks for patients to get through but did not realize the extent of the issues that must be dealt with. I certainly don't know the answers but there must be a better way!

For now Marc is doing well at home. I am staying home with him for now but must return to work soon. I will be working in the Conroe RMCHP seeing same day family planning patients once I go back. That will put me closer to home and will alleviate the issue of having to reschedule patients if I need to be out with Marc. I don't feel comfortable with him staying home alone because he cannot call for help if needed. Marc is furious that I will not leave him alone but I see no options at this point. I am trying to work out something that will satisfy both Marc and I.

Please continue to keep Marc in your prayers and I will post again once we figure out what is happening.

The Rehab fiasco

Well after haggling back and forth over the weekend, all day Monday and Tuesday morning; we decided to stay at the original facility. I was starting to feel uncomfortable with the pushiness of the other facility and every time I talked to them they would say something to the effect, "I worked there for 15 years and I am so glad I came here; they just don't do a good job there." I just don't think that it is good business practice to put down the competitor and it certainly is not ethical. I spoke to patients in this facility and they are all very happy with the care and say that they are especially happy with the therapy departments. I was told by one patient that "you shouldn't have come in on a weekend, the weekend staff only work weekends and don't usually know how everything works". Then she told me that the progress they have make with her in the therapy department is remarkable and that she couldn't be happier with the results. She said "they work you hard but it's worth it!" I asked Marc to make the final decision as to whether to change facilities and he opted to stay here.

I am very impressed with the therapy staff: occupational, physical and speech. They focus primarily on neurological problems and are very experienced. I especially liked the way they encouraged Marc when he really didn't want to continue. The nursing staff has come around and are very attentive to Marc now. I guess being the squeaky wheel helped some.

I am discouraged with Marc as he doesn't seem to have the drive that he has always had. It concerns me a great deal. I just think he is so tired of being sick that he would just rather lie in bed than get up and try to do anything. That just isn't Marc! If any of you out there have any ideas on how to perk him up I would appreciate any and all suggestions. I left today for about 4 hours, ran some errands, got a haircut and had lunch with an old friend. I think it was good for Marc not to have me hovering while he was in therapy. I am hoping that he will try a little harder if I am not there. I am going to go back to work on Thursday, so he will be here without anyone but the staff to watch over him during the day. I will continue to spend the nights here, so I will at least be with him a few hours every day. I think it also did me some good to get away for a while but I just can't help worrying about him while I am away. Care giving to a loved one is so difficult, it is so hard to be objective and you second guess all of your decisions. Marc was my rock and now I have to make decisions that may effect the outcome of this illness. I pray every day that I make the right decisions. I want more than anything for Marc to pull through this hurdle and not have any more obstacles.

I did talk to the Dr. here this afternoon and told him I would really like a full evaluation to figure out just why Marc is having the respiratory issues as he has never had any in the past. He is scheduled for a sleep study on July 1st and the staff pulmonologist will be evaluating him prior to that. I just hope they can figure out the cause of this last episode. We don't go back to MD Anderson until July 27 and 28 and will not have another MRI until the 27th. I pray that the MRI remains clear.

Thank all of you for your comments to the blog and the encouraging e-mails. I will try to post more later in the week.

Now in rehab . . . it seems like we're never going to get ahead!

Just a little history to update you on Marc's status. He had been active and was even mowing the yard with the riding mower. He was walking with his cane and getting around pretty good. I had gone back to work and everything seemed to be going well. About 2 weeks ago he started getting progressively weaker. The first week I would come home from work and find him in his recliner and he told me he just wasn't feeling good, that the muscles in his abdomen hurt like he had pulled them. I tried calling his Dr. on Friday morning and left several messages on the 'damned' voice mail system and no one ever called me back. That weekend I couldn't get him up to do anything, he would just go between his recliner and the bed and wouldn't eat. I called the neighbor and her daughter agreed to come to the house and stay with Marc every day while I worked. Although I felt much better having someone stay with Marc I still was uncomfortable with his failure to improve. He felt so bad that he didn't even want to go to speech therapy and that is one thing that always perked him up. I did finally get a hold of someone in his Dr's office on Monday and found that the Doc was out all week and they couldn't get him in until the 24th. They did offer me an appointment with the PA but I had seen her before and was not impressed.

So I was stuck with no Dr. and Marc needed to be seen. I called Steve's Dr. and they worked him in on Wednesday morning. After taking a thorough history and examining Marc the Doc felt Marc may have a systemic infection causing the extreme fatigue and weakness. Marc's blood pressure was very low and his oxygen saturation at the office was at 77%. That wasn't good. So the Doc sent us to the ER.

We were only in the ER for about 3 hours before we were admitted. All the testing revealed only a low Potassium level, a low white blood count and low O2 sats. So they gave him IV fluids, Potassium and put him on oxygen. A CT scan of his chest was negative as was an Xray of his abdomen. Physical therapy finally got him out of bed on Thursday afternoon and walked him about 20 feet using a walker. On Friday morning his labs were normal and he had walked a little more with physical therapy's assistance. Respiratory therapy assessed his oxygen sats while he was sleeping and the were all over the place, suggesting severe sleep apnea. We knew that from his last admission but Marc had refused a CPAP. The Dr. said he no longer needed to be hospitalized but did need oxygen all the time, needed a full evaluation for sleep apnea and felt that Marc would benefit from admission to a rehabilitation facility. I agreed, as I knew it would be too much for me to take care of him at home with minimal assistance from home health.

I was left to choose what facility to send Marc to. We have 2 facilities within 2 miles of our house, one is new and the other one has been here for at least 17 years (it was here when we moved to Texas). I asked if I would be able to stay with Marc and was told that I could stay in the older facility but in the new facility they asked family to go home at night; so I choose the older facility. I guess the place is probably OK but my first impressions were not good. I just did not have a good feeling about it. For example, on admission last night we were told that Marc would have physical therapy and speech therapy over the weekend but they gave me no information as to when the therapy would begin. Well this morning Marc was up early and wanted a shower, so I asked for towels and took him to the shower. The nurse brought me towels but did not offer to assist and did not tell me that the occupational therapist would be in to assess Marc's skill level (which included helping him take a shower). Well when the OT came in at 10 am and told me she was going to do her assessment on Marc and would start by taking him to the shower to see how he would do. I lost it! They had known all along that this is what would happen but didn't bother to tell me. I let it be known that I was not happy.

I was so upset that I called Steve to come stay with Marc and I took clothes home to wash. I then got on the internet and looked up the newer rehab facility and called them. They were more than happy to admit Marc there and offered me a tour "any time of the day or night". The supervisor I talked to put me in touch with the admissions supervisor. I was told that I needed to request that the Dr. (whom we had yet to see) write an order to have Reliant come to assess Marc so that he could be transferred. So I talked to Marc's nurse at Health South and was told I had to talk to the charge nurse. When I called the charge nurse she was not available. I then called the Reliant admissions supervisor and she contacted the liaison with Health South who then called me. She as much as told me I wasn't giving them a chance and they would not do anything. Well if you know me, that did not set well. I went to the Reliant facility and was given a tour. I met with the admission's supervisor, who came in on her day off to talk to me. Long story short, we have to wait until Monday morning and call the insurance company to get approval before we can do anything else.

When I got back, everyone was bending over backward to please me. The case manager came in from home to talk to me. I just told her "you have until Monday to change my mind". I don't think they will but I will give them a chance.

Needless to say, it has been a very frustrating experience and one I don't wish on anyone. I just pray that the rehab helps Marc and he gets back to where he has some independence again. I know that it has to be devastating for him and I just can't imagine how he feels. He still cannot say more that 3 or 4 words and can't get out the one word that would complete the sentence, so that leaves me guessing to what he is trying to say. He will try to write what he wants but usually leaves out key letters and I still don't know what he is trying to tell me. He then just gets so frustrated he says "I don't know" and will just quit trying.

I ask you to continue to pray for Marc's recovery. I will post again next week.