This is Denise (Eric’s fiance) writing again. At 8:30ish on Oct 30th, Eric ended his battle with cancer. He put up a long hard battle and is now resting peacefully and is no longer in pain.
A big thank you to all of you for your continued support and prayers!!
Hey everyone,
First of all, I would like to thank all of you for your continued prayers and support for Eric and everything he has gone through. You do not know how much it means to myself (Denise, his fiancé) and his family. It is a joy to hear how he has touched so many lives. Not a day has gone by where I have not heard someone say how he has touched their lives in some way or another. He is a very positive and strong individual who unfortunately is having his life cut short.
Now on to the update, Eric has been in and out of the hospital for the last 2 months. He is on a rollercoaster where he has good days and bad days. Since the diagnoses of the brain tumors, he has gone downhill quickly. He has a new tumor in his brain which has swelling around it so he is losing some of his short-term memory. They put him on a high dose of steroids to see if that will bring some of the swelling down in his brain. His liver has also become swollen and is pushing on his lung making it hard for him to breath. He also has pleurisy (fluid in the lining of the lungs).
We had a meeting today with his Doctor, the hospice nurse and the social worker about the possibility of moving him because Eric had expressed interest in moving to a hospice home. The one thing that we know for sure is he will not be able to come home. He will more that likely be staying at Methodist Hospital because they have the best set up for him with all of the medications he is on. Several hospice places do not have the stuff needed to care for him. There is one place that is a possibility and that is St. Gertrude’s. He is on a waiting list and once a bed opens they will review his file to see if they have everything to accommodate him appropriately. The updated prognosis is approximately 2 weeks. His family and I have been with him daily enjoying every moment we can. He has also had several visitors, which shows how much he is cared about.
Right now they are doing everything they can to keep him comfortable, which can be a real challenge. He is a very strong willed individual and is putting up a heck of a fight.
I know I haven’t updated recently, but I’m here to rectify that situation!
I completed my whole brain radiation at Mayo Clinic on Saturday September 6th, and was discharged from the hospital that day. I had mixed emotions about leaving, honestly. While it was nice to get out, it was very peaceful there. It was quiet, I got free meals (with a chicken noodle soup that I loved and unlimited ice cream that I adored), the staff was helpful and attentive, and best of all, the hospital bed with that awesome air mattress on it was the most comfortable thing I’ve ever slept on. Plus, I had tons of visitors, which was wonderful. As I said in a previous post, visitors have become so very important to me, and I didn’t go a day without having someone there.
After release on Saturday, my family and I went back to my house and hung out for the night. We had planned to go to the Renaissance Festival the following day, except for Theresa and Tim who had to fly out. Unfortunately, the adjustment from awesome hospital bed to my bed and/or recliner did not go well, and by Sunday morning, I was in a lot of back pain. I loaded up on drugs on Sunday and eventually felt better, but by then the day was shot. Tim flew out Monday morning as scheduled, but Theresa managed to stay another day. I was glad to have her there! Theresa and Cheryl cooked on Sunday, making a round steak for dinner, a casserole for me for the next day, and pumpkin bread for snacking. They went overboard and I appreciate everything they did.
On Monday, the Park Nicollet/Methodist Hospital Hospice service social worker and nurse visited me. They went over the hospice and how it works. Basically, they are available as little or as much as I need them. They start out coming twice a week and then taper off until I call for something. Any medications I need I now order directly through the hospice service, at no cost to me, and they actually deliver it to my door. They also can get equipment I need, such as bed supplies. They offered to get me a hospital bed for better comfort, but the lack of space here makes that difficult. I’m waiting and seeing if there are other options that will work before diving into something like that. They have tried a thin air circulating mattress, which was ineffective. They brought a foam wedge to prop me up, but it was TOO high. They are bringing an egg crate mattress to try. My dad bought me a standard camping air mattress. Unfortunately, none of these worked, and I’m still sleeping in my recliner. It works, but it’s obviously not ideal.
I had another visit with Lisa, a hospice nurse, on Wednesday, and we just went over a few more things. She’ll call me on Friday and see how things are going. I saw Dr. Sherman briefly today and she increased my methadone dosages. She also gave me the paperwork to get a handicap sticker for my car. That’ll be helpful as it is getting more difficult to walk a lot, so being able to park close will be advantageous.
I think that’s about it for now! I’ll post more as more happens. I promise! 
When I arrived at Mayo on Wednesday night, I weighted around 143 lbs. When I was weighed yesterday, I was at 162 lbs. That’s quite a gain, and was appreciated. I thought it was all the ice cream that helped, but Lisa said over half of it was probably from the IV fluids. Apparently I was severely dehydrated when I was admitted, to the point where it was affecting my kidney functions. Either way, the increase in weight is a very good thing!
Because of the poor reaction to the intrathecal pump test, and that it would require a surgery when my remaining time is uncertain, and that I can get good enough relief from pills, I’ve decided to not to the pump. I’ll just continue on oral meds to control my pain.
After a discussion with Lisa this morning, I did decide to go ahead with the whole brain radiation. I had my first treatment already today, and will do another the next 4 days through Saturday. The only expected side affects are fatigue and hair loss. The benefits though are a prevention of brain swelling which could lead to seizures, which wouldn’t be good.
Otherwise, things are really going pretty well!
I’ve always cherished time alone. I’m not hermit or anything, but in recent years I have found that I frequently enjoy time to myself more than I do time with others. Suddenly, I’m finding that to be very different.
Tonight is my 6th night in the hospital, and for all but the time I’ve been alseep, there has almost constantly been people around me. In fact, there have frequently been many people around me, as many as 10 at a time. Tonight, for the first time, I have been alone from about 7pm on, and I’m finding myself to be really lonely. It’s very strange for me, someone who has always cherished time alone, to be so alone after so many days with so much company. It just goes to show how attitudes change when terminal news is delivered and you realize what you are truly going to be missing in the near future.
Here in the hospital, there are other happenings.y
The tumors in my brain are creating pressure on my skull, which can affect my appetite. In addition to the tumors in my belly lymph nodes that press against my stomach, this makes eating the problem that it has been. To help, the doctors have suggested doing some radiation to my brain. There is little in side effects, just hair loss and possible fatigue. There is, however, little guarantee about the effectiveness of the radiation. Most docs, including Lisa, are on the fence about whether or not it’s going to do any good. They’ve left the decision on whether or not to do it up to me, and I have to let them know by Tuesday. It would extend my stay in the hospital by 5 days for treatments.
Also, we are still discussing the intrathecal pain pump. We attempted the trial today, and it was a failure. Despite their guarantees that it would be pain free, they were unable to get the needle into my spine without hitting the nerves or bone and causing me severe pain. They can wait and try again on Tuesday under live x-ray, called fluoroscopy, that would guide them around and prevent this. I have to decide too if I want to try this.
So I have a couple decisions to make before Tuesday. The doctors have indicated that otherwise, I’ll be able to get out of the hospital likely on Wednesday.
As you may know, my nutrition has been better. My appetite has been horrible and I haven’t been eating well at all. Recently, it’s gotten worse, to the point where I can’t eat anything at all. Even eating an ice cream bar causes me to vomit. It is so bad that on Tuesday, August 26th, I called Lisa and expressed my concerns. My weight was down under 150 lbs, when I was over 200 just months ago. That and not eating well is not a good thing. Lisa told me to take some steroid, dexamethasone, to boost my appetite and call her the following day. I took the dex, and that night vomited like 5 times. Obviously it didn’t work.
I called her back on Wednesday and asked what to do. She spoke to Dr. Croghan, and they agreed that I needed to be hospitalized. I checked myself into Methodist Hospital at Mayo Clinic Wednesday night. They started pumping me full of fluids and pain killers.
On Thursday, they did an MRI of my brain. And this is where things go wrong. The MRI showed tumors in my brain. This new development is extremely bad, obviously. It means that the cancer is spreading deeper and faster. She ordered a full body CT for the following day to see what else has spread.
Without going into too much more detail, I asked Lisa what my prognosis is. All treatment options have been exhausted and there is nothing more they can do for my cancer. The problems with my nutrition and the spread the cancer are are going to take my life, probably within a matter of weeks. That’s right, my fight is nearly over, and I have only have weeks left. Of course, strange things happen, and nobody ever knows what can happen. I could defy odds and last much longer, but it’s not likely.
So, friends and family, this blog appears to be nearly at an end. I hate to notify you this way, but for many, it’s the only way you keep up with what’s going on with me. I’ll continue to post new updates and happens here as long as I possibly can. Right now, I feel absolutely fine, and really don’t even feel like this fate is upon me. I’ll keep a positive attitude and keep you all informed.
So, until next post, take care everyone!
For every procedure I have, my insurance company, Blue Cross/Blue Shield of Minnesota, sends me an “Explanation of Health Care Benefits” that details the charges, how much contractual discount the insurance company gets, how much they pay, and how much I owe. Since I have a yearly out of pocket maximum of $5500, I have not had one that says I owe anything since February. Imagine my surprise to get one today that says my stay at Great River Medical Center, which cost a total of $33,605.92, was not covered at all. Not one penny!
Upon investigation, the notes stated that, “These charges are not covered. Bariatric services are ineligible unless performed by a National Center of Excellence provider….” Bariatric? Somewhere, somehow, somebody’s wires got crossed and they think that my life saving emergency intestinal resection was nothing more than …weight loss surgery???
Come on, at 6′0″, 200 pounds, and a BMI of 27.1 (which is considered mildly overweight and nowhere near obese), there’s no way anyone would even approve me for the surgery!
Needless to say, I will be calling BCBS on Monday to get this sorted out. There’s NO way I’m paying for that!
Today, August 22nd, is the 2-year anniversary of my melanoma diagnosis. I was notified of my diagnosis on August 22nd, 2006.
I’m a little worse off, but still hanging in there!
I have not updated you in a long time, over a month now it seems. There is a reason - I’ve been through quite a bit, and as a result of that quite a bit, I’ve been in another quite a bit of pain. It’s been very difficult to spend any significant amount of time on my computer, like the time it takes to write posts. But here I am now, ready to continue to spread the word and keep you all informed of what is transpiring in my world.
Obviously, in a month, a lot has happened, so there is a LOT of information. Thus, I may cut out some of the more minute details that I usually include and only hit the major parts. This will still be a long post, so I’m breaking it up so it doesn’t take up the entire home page. So, you have to click below to continue reading.
Many of you know that I’ve been through a lot in the last 2 weeks. I have a HUGE update to do, and I’ll do it as soon as I can, as soon as things settle down a little. Hopefully by the end of the week. Hang in there!
Over the last several days, I’ve noticed a few things.
The pain in my back has been quite a bit less than it was. It seems like the Methadone is working better than the OxyContin had been. It’s not perfect yet, and I’m still having pain, but it’s better. I’m hopeful that if they increase the dose, I’ll be doing very well.
I’ve been really, really tired the last few days. I’m guessing it’s fatigue caused by one of the drugs, but I’m not sure if it’s from the Abraxane or from the Methadone. I do know that I’ve been sleeping 8-10 hours, I’m having a terrible time waking up, and I doze off in my chair frequently.
Finally, the lymph node under my right arm SEEMS to have shrunk a little. My self examination is very unscientific, so I’m not positive it really has, but it does give me some encouragement that maybe the Abraxane is working, although it seems like it’s awful soon for it to have that much effect. Oh well, I can dream, can’t I?
Today’s Mayo Clinic agenda began with a visit to the Pain Clinic at Methodist Hospital. I met with the doctor, whose name I forget. We discussed the causes of my pain and where the pain was, and he did some simple movement tests on me to help pinpoint where the pain is. He decided to take me off of the OxyContin and put me on Methadone instead.
Next I saw Lisa for my usual consultation. We discussed the Abraxane and how the treatment would go. She warned me about some of the side effects, which are similar to Taxol. In general, though, it sounds like Abraxane is better tolerated than Taxol. Abraxane has a response rate of approximately 30%, which isn’t great, but the response rate for Taxol/Carboplatin wasn’t very good either and that worked for me for a while.
I mentioned to her that I’d been having some back pain in my mid/upper back, too, in addition to my lower back. I pointed out the location, and she looked at my latest CT and said it looks like I have some Degenerative Disk Disease. In other words, Old Man’s Disease, as she called it. She checked out the lump under my right arm and verified that it is a lymph node. She said to keep an eye on it.
Finally, I had my Abraxane treatment. Apparently, it takes a while to mix in the pharmacy, as I waited over an hour for the IV bag to arrive, and the infusion itself only took about 30 minutes. The nurses said that’s typical for Abraxane. It all went well, though! Now, we just wait and hope that it does the job!
My blood test today showed that my hemoglobin stayed up. It was down to 7.2 before the transfusion. Now, it’s at 9.8 (I think it was). That’s good news!
Lisa and Dr. Croghan decided to change plans, and skip the clinical trial and go directly to the Abraxane. So, I go in on Friday morning to the Pain Clinic, and then see Lisa and get my first Abraxane infusion Friday afternoon. Finally, I feel like we’re back moving in the right direction!
Lisa called today. We discussed my pain, and I reported to her that my back pain was about the same, but the leg pain was completely gone. The radiation seems to have worked on the tumors in my hip. Lisa decided that I should see the Pain Clinic at Mayo to try to find a way to better control my back pain.
As for melanoma treatment, she has a couple things she wants to try. First, she wants to put me on a study where antibodies are used to fight the cancer cells. She explained it to me, but it’s all greek to me. Basically, it would be a one time infusion, and we would see how well it works and decide what to do based on the results. I would be only the second person to receive this treatment, so there really is no history to say how well it may or may not work.
Following that treatment, she wants to put me on Abraxane, which is a lot like Taxol, except that Taxol is dissolved in an alcohol base, where Abraxane is dissolved in an albumin base. Apparently, Abraxane has had some good results in others for who Taxol has stopped working.
Both of these, however, depend on my hemoglobin. I have to get my blood drawn tomorrow to see how it is, and she’ll call me to discuss the results.
I met with Dr. Petersen today. After discussing the tumors in my hip and the resulting pain in my thigh muscles, she decided that we should try radiating the site. She thought there was a good chance that doing so could reduce some of the pain I’ve been having in my thigh, although there is no guarantee. She thought that because it wouldn’t be hitting any sensitive places, like my intestines or stomach, that could cause side effects, that we could go with a single, fairly large dose of radiation. We did the simulation following the consultation as scheduled, and she decided that we should squeeze in the treatment today as well.
So, I went to my blood transfusion and had my 2 units of blood put in me, then returned to Radiation Oncology and had my hip radiated. It only took about 45 minutes and I was done. It was an unexpected surprise that I was able to get it all done in one shot, and in the same day that I was already there. I was thinking I’d have to return another day or two this week, but now I’m off the hook.
Hopefully the radiation will do a better job on my leg than it did on my back.
Both the endoscopy and colonoscopy ended up being fairly painful for me. The sedatives and narcotics they give apparently aren’t strong enough and they didn’t work well. It could be because I’m so used to narcotics now that their effectiveness has diminished.
So, after all the pain of the two scopes, what did we learn? Nothing. It turns out that the problem lies just beyond the reach of both scopes. How do we know the problem is there then? My happy regular 2-month CT scan that I had today!
The scan showed that I have new tumors in my small intestines. These tumors, along with the fact that I’m on the blood thinner Fragmin, is likely making me lose blood through my stools. They are also a likely cause of my continuing nausea.
The CT, along with an X-ray of my hip, also showed tumors in the socket part of my right hip joint, which is the cause of the severe leg pain I’d been having over the last few weeks. I don’t recall if I’ve mentioned that pain on here, but I originally thought it was just a muscle pull or something, until it didn’t heal. Then I mentioned it to Lisa.
I also have some small growths in my lungs and lymph nodes, but Lisa wasn’t too concerned about those.
What does this all mean? Where do we go from here? Well, the continuing tumor growth means that the Temodar isn’t working, even though I only went through one round. And unfortunately, there aren’t a lot of other options for treating me now. The “conventional” methods are exhausted, leaving only clinical trials as options. There are some possibilities there, but before I can qualify, my hemoglobin levels have to be stable. First, I’m done with the Fragmin. It’s contributing to the blood loss, and the risk of a clot at this point is less than the risk of losing blood. I am getting another blood transfusion on Monday to bring my counts back up. Then I’ll meet again with Lisa to see what’s next. She put me on an iron supplement called Vitron C to boost the iron I’m missing from my low blood levels.
Also on Monday, I have an appointment with Dr. Petersen in Radiation Oncology for a consultation and a simulation to radiate my hip. Lisa thought it would only take a couple treatments, and it will hopefully stop the growth there and reduce the pain.
It wasn’t a good news day, but that’s getting more common lately. We just keep on truckin’!
It’s early and still being tested, but it’s encouraging!
I am required to have a driver after my endoscopy, as I get pumped full of hefty drugs that may put me to sleep, or at least will make me really drowsy. Unfortunately, I had some trouble securing a driver for Thursday. So, I had to reschedule the exam for Tuesday. I have a driver lined up, so it should be all set to go!
I had better luck on Wednesday. My blood was ready for me, so I went in, got hooked up, and got the transfusion with very little delay. I was home in 5 hours.
Wednesday night, I drank the magnesium citrate solution and took the Bisacodyl tablets that were supposed to “flush” my digestive system. The idea was that they’d give me diarrhea and, along with the liquid diet restriction, would leave me empty and ready for the lower endoscopy. Unfortunately, my body was stubborn, and I only had a single, very small bowel movement.
I called Lisa today to report the poor results and find out what she wanted to do. She was rather shocked that it didn’t work. Because I was still blocked up, she decided to reschedule the appointment. I am to take Senekot and Colace (laxative and softener) to get things moving, and she will prescribe me “GoLytely”, another laxative they use to prepare for lower endoscopies. My appointment is rescheduled for next Thursday. She also said there is a chance that the stuff I took last night may still have some effect. She said that if I get diarrhea too bad, that I should head to the ER. Boy, what fun I have, eh?
I got to my transfusion appointment at 8am. By 2pm, they still hadn’t started.
There was apparently some problem with antibodies in my blood that made finding compatible blood difficult. Finally, at 2pm, they said they MIGHT have it ready by 3pm. Since they weren’t sure, I told them just to spend the rest of the day figuring it out and I would come back tomorrow. I didn’t want to sit around any longer. They were fine with that.
So, I go back at 9am tomorrow morning to actually have the transfusion. Hopefully, with the rest of the day to work on it, they’ll have it ready!
My hemoglobin today was 7.2, well less than the 7.8 that started it all.
Lisa called Dr. Sherman’s office to set up another blood transfusion for me up here. I will have that done Tuesday (tomorrow) morning at 8am.
She also scheduled an upper and lower endoscopy for me on Thursday at Mayo. She wants to figure out where I am losing all of my blood. They’ll put me under general anesthesia for that, so I have to have a driver to get home.
I had my blood taken today at the Shakopee Park Nicollet Clinic, who faxed the results to Lisa. Lisa called and reported that my hemoglobin had only improved to 8.1, from 7.8. It wasn’t good enough to continue my chemo. She talked to Dr. Croghan, and they decided to just wait another week and see what happens. They didn’t think it was a GI bleed or anything like that, as I’m pretty young for something like that. They think it’s still just chemo/radiation effects keeping my counts down. She hopes it’ll come up in a week, and if it’s anything over 9.0, she’ll give me the chemo. So, next week I’ll go back to the Shakopee PNC and get another blood draw and do the whole thing again.
Today was my regular monthly checkup and Temodar pill pickup. However, my blood tests showed that my hemoglobin was 7.8, which was really low. Lisa said I was probably low on blood because the radiation treatments were hitting my spine, affecting the production of blood. It is likely that the reason I’ve been feeling run down and tired so much lately is because of the low hemoglobin. I wasn’t able to get my chemo until my blood counts were back up.
Lisa decided it was best to give me a blood transfusion, which consisted simply of getting 2 bags of blood put into me through IV. It took about 4 hours to have the 2 bags of blood infused, and by the time it was done, the nurses said I was already looking “pinker”. I go for another blood test in Shakopee early next week to see if my blood counts have improved, and if they have, Lisa will mail my chemo pills to me.
I reported my continued nausea to Lisa. She gave me more Zofran and some Ativan to help fight it. She said it could take 3 weeks or more for the effects of the radiation to wear off, so she extended my work leave through June 30th.
It’s been 6 days since my last radiation treatment, yet I continue to still get nauseated. I figured that by now, my stomach and intestines would have healed and that the nausea would have decreased. Unfortunately, that hasn’t been the case.
I have my regular monthly appointment with Lisa tomorrow, with the usual blood test and evaluation. Then I get my second round of 5 pills of Temodar. I’ll have to see what Lisa says about the nausea, as well as the back pain that, while is a little better, hasn’t significantly improved.
Here are a couple photos that my sister Cheryl took of me in the radiation machine. The whole unit above and behind me, which is shaped like a large “C”, rotates around me, so that the part that is above me in the photos points at the part of the body where they want to hit. I just lay there on the table, perfectly still, as it moves and zaps away. My feet are strapped together to prevent movement, and I am laying in a head/arm mold that prevents my upper body from moving.
Yesterday, I completed the last of my 10 radiation treatments to my back. I am quite happy that it’s over. While the effects weren’t NEARLY as nasty as when I had radiation to my neck in March of 2007, they were bad enough to help me declare that radiation sucks and I don’t want to ever do it again. This time, the radiation did fatigue me a little, although not to the point where it was a problem.
The main issue was the nausea that it caused. I spent quite a few sessions on the bathroom floor in front of the toilet thanks to the radiation, and that is no fun at all. I still can’t eat a hamburger, thanks to the Culver’s incident. I tried the other day, and when my stomach started to churn after a single bite, I knew it wasn’t time yet to do hamburgers again. Other than that, a lot of foods have been difficult to eat, not because of taste, but just the reaction of my stomach to them. Hopefully in the next week or two my stomach will return to normal and I’ll be able to eat right again. I think I’ve lost weight again because of the difficulty I’ve had eating.
My back seems to hurt a little less, though not a whole lot yet. The Radiation Oncologist said it’s still early and we’ll see what happens in the next couple weeks.
I have another week of disability leave from work to recover from the radiation. I’m hoping that the nausea will clear up in that time. Sometimes it hits at odd intervals, with little or no warning. I need to be sure it’s done with before I go back else I could cause quite a mess at work, and nobody wants that.
I’ve completed 4 of my 10 treatments as of today.
This weekend, I went to the trimesterly convention for the Minnesota Jaycees, which was a nice break from the treatments. It was so nice (and surprising) to have so many people ask how I was doing, say they are reading my blog, and wishing me well and say they are praying for me. It never ceases to amaze me when someone tells me that they read my blog. I started writing it mostly for close friends and family members, yet it seems like everybody I associate with one way or another has made it here at some point. I appreciate all of your support and thank you for reading!
I continue to have nausea occasionally, and it seems to hit at odd times with little or no warning. Sometimes it’s right after a treatment, sometimes it’s when I haven’t had one in a couple days. I got a new prescription today though that hopefully will help. My back pain has not improved yet from the treatments. I’m still loading up on narcotics to keep it down. For the most part, that’s worked well, although Saturday night at the convention I was in quite a bit of pain and the drugs weren’t helping, leading me to crash early.
I got a call from the American Cancer Society’s Hope Lodge in Rochester today. They have a room open for me and I’ll check in tomorrow. The Hope Lodge is a 60 room facility where adult cancer patients from out of town can stay while receiving daily chemo or radiation therapy. I’ll be staying there Tuesday-Thursday nights, then coming home for the weekend, then (I think) staying again Monday night for my last treatment on Tuesday. It’ll save me quite a bit of gas money, although, I’ll have to bring plenty of material to keep me entertained. I’m sure I’ll stock up on DVD movies which I can watch on my laptop, and they have internet access so I can play on there.
Last night, I had Culver’s for dinner. It only stayed with me for about 3 hours. I don’t think I’ll be eating Culver’s again for a while.
The radiation techs told me today to take Compazine every 4-6 hours, even if I don’t feel like I need it. If that doesn’t help, they said they can give me other stronger anti-nausea medication.
I’ve been following their advice so far and taking the Compazine. So far so good, but it hasn’t been very long. Two treatments are down, another tomorrow morning, then I get the weekend off. Woohoo!
I did my first radiation treatment to my back today. It went pretty easy. They did the simulation this morning, getting me positioned, marked up, and creating a pillow that would put me in the same position every time. Then at noon I actually got zapped. The zapping itself was really short, only like 20 seconds, which was much much much less than when they did my neck. Afterwards, my stomach was just a little upset, but I’m not sure if that was from the radiation or from the fairly uncomfortable position I was laying in.
My next treatment is tomorrow at 5:15pm, although they said that they are very good about getting people in early, if I wanted to show up around 3pm or something.
I’m considering staying at the Hope Lodge next week. The Hope Lodge is a free lodging facility for out-of-town cancer patients. I could stay there from Monday to Friday and save a ton on gas going back and forth, although I’d probably be bored out of my mind. They faxed my info over today and I think they’ll tell me more tomorrow.
Today, I met with Dr. Ivy Petersen, a Radiation Oncologist at Mayo. She showed me the CT and MRI scans of my back. Apparently the fractured vertebrae is in my upper back, not the lower, but it’s very possible that the pain is traveling down and manifesting itself in my lower back. Also in my lower back, near where the pain is, is some tumor growth that is worrysome and could lead to problems.
Dr. Petersen decided it would be best to radiate both spots, both to relieve pain and to prevent future problems. I start tomorrow (May 7th) at 8am, and will do 10 consecutive days of treatments, excluding weekends. She suggested I take 3 weeks off work, so I will be off from May 6th to May 27th (but because of my schedule, my first day back would be Sunday June 1st).
Again, it sounds like the main side effects are fatigue and nausea, although both may be minimal. We’ll see!
Also, I completed my 5 days of Temodar this morning. It seemed to go fine and without any issues, but of course, this was the first round. Cumulative rounds may get worse…
I woke up this morning and didn’t want to get out of bed. When laying in the right position, I felt fine. But when I moved, it was apparent that my back was going to be in a bad mood once I got up. I should have taken my drugs and waited a little longer, but I needed to use the restroom, so I got up. And I was right, it hurt.
I took my 60mg of OxyContin, 30mg of Oxycodone, and 1000mg of Tylenol, and about an hour later, I was starting to feel better. Give me another hour from now, and I think the stuff should be kicked in well and I’ll be doing well. I hope so, because I have a meeting I have to attend, and sitting in meetings with back pain is not a fun proposition.
To anyone reading today, have a great Sunday!
I’ve taken Temodar the last two nights, following the instructions given by the doctor, the bottles, and the Temodar brochure. I take a Kytril, wait an hour then take the Temodar, wait an hour, then go to bed. So far, I’ve had no ill effects. I do another tonight, then two more, and I’m done for 23 days.
My MRI on Friday was uneventful. As usual, I dozed off inside the machine. It’s amazing that I can do so considering the considerable amount of noise the MRI machines make. That’s me, though, I can sleep anywhere.
I was scheduled to have my CT this morning then meet with Lisa this afternoon, then have my chemo in the hospital Thursday. The CT changed everything.
Lisa was out today as her baby was sick, so I met with Dr. Croghan instead. Dr. Croghan reported that the spot in my lungs had nearly doubled in size, while tiny spots in my left neck and armpits had increased in size, and one of the spots in my spine had grown too. Obviously, this was not good news. It means that the Taxol and Carboplatin are no longer working to control the cancer.
The CT also showed that there is a fracture of my L1 vertebrae. My back pain has been much worse over the last couple weeks, to the point where the OxyContin and oxycodone weren’t working to control the pain. The fracture explains why I’ve been having so much pain. The fracture was probably caused by the growing tumor.
So, what now?
For the cancer, Dr. Croghan suggested I switch to Temodar (aka Temozolomide). This regimen consists of taking Temodar pills for 5 days, then breaking for 23 days, and repeating. The nice thing about this is that I won’t have to go to the clinic to have it put through IV. I will go once per month for a checkup and to get my new 5 days of pills, then I’m done for a month. The main side effects of Temodar are nausea and fatigue. The nausea is well controlled by taking a Kytril one hour prior to each daily dose of Temodar. The fatigue I’ll just have to deal with. If you remember, previous posts mentioned also doing a drug called RAD001. I guess I can’t do this because I’m on the blood thinner. He also gave me a prescription for a steroid that is milder than Dexamethasone, to help with the nausea.
For my back pain, Dr. Croghan increased my OxyContin to 60mg from 40 and gave me more oxycodone. He told me to start taking 1000mg of Tylenol three times daily, at the same time I take the OxyContin, to help reduce swelling in my back and to enhance the effects of the narcotics. He recommended that we look into radiating the tumor that is causing the problem. He said it would likely be radiated for 5 consecutive days, and the effects would be mild, mostly some nausea and fatigue (what else?). It would be nothing like what happened when my neck was radiated. I first have to have an MRI of my back, which I’ll do on Friday, then I meet with a radiation oncologist, which I’ll do next Tuesday. Hopefully this will relieve a lot of the back pain I’ve been having.
So, it wasn’t a day of good news. On the bright side though, my chemo regimen gets easier and my back pain may get relieved.
In a demonstration that even some of the most hard-to-treat tumors may one day succumb to therapies aimed at molecular “weak points,” researchers at Dana-Farber Cancer Institute report the first instance in which metastatic melanoma has been driven into remission by a targeted therapy. Dana-Farber is a principal teaching affiliate of the Harvard Medical School (HMS).
Read the entire article here: http://www.news.harvard.edu/gazette/2008/04.24/05-melanoma.html
Friday afternoon, my best friend got married. I was so glad that I felt well and was able to attend. After my long weekend of feeling so terrible, I was worried how much of it would carry over and if I’d be able to make it. Luckily, I felt mostly fine, and I was there to be one of her witnesses and her photographer.
After the ceremony at the courthouse, we went to Applebee’s. I started with a tall beer, and had a steak, a baked potato, and fries with buffalo wing dipping sauce. All of it tasted incredible, beer and all. But a few bites into the steak, guess what? Of course, my stomach started feeling strange. I ended up only eating about a fourth of the food. Then, when I got home about 7 hours later, I vomited almost immediately. Luckily I’d pretty much digested the little that I’d eaten and didn’t lose much.
This is the second time in a row, though, where I got sick about a week after my chemo. It’s not limiting itself to just the days after treatment anymore. In fact, while I’ve felt MUCH better since Monday evening, my stomach has never been quite right since my last chemo treatment.
Recently, Encyclopedia Britannica started offering free one-year subscription to “web publishers”. To get it, you have to fill out a form that includes your website address and a description of your site.
I applied, and was approved for a free subscription! I can now access the web version (retail $70) of the $1400 encyclopedia set. I guess this means that they think I’m a web publisher with good site content!
Yes, it’s been over a month since my last post. Yes, I know that’s bad and I need to do a better job of updating. Yes, I’ve been getting a lot of crap from a number of people for not keeping my blog up to date. I hope everyone can forgive me!
Since my last post, I’ve had two treatments. Logistically, they were the same. I showed up at 8am at Methodist Hospital, checked into my room, and spent the whole day there getting my treatment. There really isn’t anything new as far as what I am doing. So, the main thing I have to share has to do with symptoms.
First, my back. I’m now on 40mg of OxyContin every 8 hours, along with 15mg Oxycodone as needed for breakthrough pain. After months of tinkering with my pain killer levels, I think we may have found a good mix. My back has felt better in the last few weeks than it has in months, and while I still need the Oxycodone for breakthrough pain, I haven’t needed it as often.
Following my treatment on April 3rd, I had a little more nausea than normal. It was enough that I could tell it was worse, but it was tolerable. But then April 17th happened.
I had my treatment on Thursday the 17th, then woke up Friday with my usual post-chemo nausea. I felt nauseated most of the day but no more so than in previous treatments. Saturday, I got up in the morning and vomited. It’s not the first time I’d vomited from chemo, but usually I feel better afterwards. So I went to karate expecting to have no problems. That was a big mistake! I barely made it through half the class before I lost it again. I could tell at that point that something was different and I was in for it.
Basically, I spent Friday morning through Monday night nauseated, and became very familiar with the inside of the toilet bowls in my house. I tried eating here and there, but didn’t have a whole lot of luck keeping stuff down. I effectively didn’t eat much from Thursday night to Monday night. I called in sick to work both Sunday and Monday nights, as there was no way I’d have been able to function.
Yes, it was by far the worst the chemotherapy has ever affected me. The Kytril and Dexamethasone that Lisa had prescribed to me didn’t seem to help much, although a couple times that I took the Dex, I vomited within minutes afterwards, so it may not have stayed in my system long enough to help.
I go to Mayo next Wednesday for my 2-month CT, and have treatment on Thursday. For the first time, I’m actually dreading getting treated. I really don’t want to go through what I went through this week again, and I know that it could very well be worse.
I checked in at Mayo at my 8:30am time. Had my blood drawn, checked back in for chemo, and was called back. I was ready to ask for a room with a bed instead of a chair as I didn’t think sitting in a semi-comfortable chair for 8 hours with my back the way it is was a good idea. Luckily, they took me to a room with a bed anyway.
Once there, they kept changing their minds as to what they were going to do with me. First, they wanted to take me over to Methodist and have the chemo all done there, Taxol and all. Then they decided to do the Taxol in there on Gonda 10 and then move me to Methodist for the Carboplatin. That’s what they ended up doing.
As I was getting the Taxol, Lisa came in and talked to me. She said that there was a policy change just that week where all patients who have been desensitized have to be treated in the Medical Oncology unit at Methodist. So, my Carbo this time would be given at Methodist, and in the future both Taxol and Carbo would. She gave me the prescription for Fragmin 18,000u in one .72ml shot. She also bumped my OxyContin up to 30mg, although she had to do it in two pills of 20mg and 10mg, as they don’t make 30mg ones.
After the Taxol, they moved me over to Methodist, where I got my own room, just like I was in two weeks ago. Unfortunately, they didn’t know that I’d be coming (not sure why), so they had to arrange a nurse for me. That unit has a 1:1 nurse:patient ratio, so they had to have someone dedicated to me. They did get someone, so I was good there. The problem then was that they didn’t get the Carbo prescriptions mixed, so I had to wait almost 2 hours for that. I didn’t get the Carbo started until after 11am.
The somewhat good news is that because I’m doing this at Methodist, I get to order lunch and dinner off the hospital menu. It’s good because, well, free food! It’s bad because, if you remember, the food isn’t all that impressive. I went for the breakfast (french toast, etc.) for lunch, and chicken strips and a burger for dinner. I know I gave the burger a bad review last time, but I tried it with bacon on it thinking it might be better. I was wrong. Luckily, by that time I wasn’t terribly hungry anyway, so the sides filled me up.
The Carbo was supposed to go 7-8 hours, yet for some reason I didn’t get out of there until about 1am, which was much longer than that. Hopefully it’ll go quicker next time. Lisa said next time I should be down to 4-6 hours. Then I got to drive home at 1:30 in the midst of a snowstorm. It was coming down hard, making visibility limited, but the ground was warm and everything melted right away and it was never slippery. I got home at 3:00am, after leaving at 6:30am. It was quite the 20.5 hour day!
I talked to Lisa twice this week - once on Tuesday and again on Wednesday.
She and Dr. Davila determined that there was no reason I needed to do the Fragmin in two shots. I need 18,000u, for which the resident at Methodist prescribed me one shot of 10,000u and one of 7,500u. Lisa is going to write me a new prescription for a single 18,000u shot that I can fill once my current 2-shot supply (30 days worth) is expended. That will be so much better, as the shots are a bit painful and leave big purple spots, and they’re expensive ($100 copay for each box of shots, so it’ll decrease from $200/month to $100/month).
My next chemo, scheduled for next Thursday the 20th, would normally be at Park Nicollet. However, because of the desensitization, Lisa wants me to do it at Mayo. I’ll do that one there, then two weeks later at Mayo again, and then we’ll see from there.
Next week, my treatment will be trimmed from 6 bags of Carboplatin to 4 bags, but will still take about 7 hours. The next time I will be down to 3 bags at 4 hours, where it’ll probably then stay for the duration of my treatments.
The OxyContin has been working pretty well for my back. My typical pain has gone from a 6 (on a 1-10, 10 worst scale) to about a 2, with the Percocet once again working for breakthrough pain. Now I understand what the pain doctors meant by the OxyContin giving a “base” for the Percocet to work on. It means that I have a base amount of oxycodone in my system, so when I take the Percocet, I’m adding more to it, thus giving me an overall amount greater than with Percocet alone. Whatever, it works. It’s actually been a little worse today. Not quite the 6, but about a 4, which is the worst it’s been since the OxyContin kicked in.
I was uncertain how much physical activity I could do with a pulmonary embolism, so I asked Lisa. She said I could continue to do non-contact karate (no sparring), but suggested I stay away from other workouts for now (cardio, weight training, etc.).
This was my 3rd year in a row with a hospital stay. In September 2006, it was my first neck surgery. In January 2007, my 2nd. Now in March 2008, a PE and a desensitization.
As with the other times, I slept horribly, probably a total of maybe two hours on Thursday night. It didn’t help that they came in to draw my blood at 3am and to give me Oxycontin at 6am.
Friday morning, a group of 5 doctors stopped by to talk to me about the pending Carboplatin desensitization, which then proceeded around 11am. They gave me a total of 6 IV bags, each with a higher and higher concentration of Carboplatin, until at the end of the 6th bag I had received a total dose equal to what I used to get in 30 minutes before my reaction. I didn’t have any problems, no reaction, so so far so good!
The pain specialists stopped by again and said they were going to put me on Oxycontin. They said that it can take a few days to really take effect, so even though I’ve still been having pain, they want me to stay on it and see what happens.
I asked Lisa about the slight progression of the cancer while I was on Taxol only. I asked if the fact that it progressed so quickly when some of the chemo was removed suggests that I will have to be on chemo the rest of my life, and she reluctantly nodded yes. She said that there will probably come a point when the Taxol and Carbo stop working, and then we’d have to switch to some other drugs, but that I would probably be stuck on something permanently.
One of the doctors said that I probably wouldn’t have to stay Friday night if everything went well. I asked Lisa what she thought when she stopped by and she agreed. Thus, I actually left Friday around 11:30pm and stayed at a hotel in Rochester. They wanted me to be close, but it was more comfortable than a hospital bed. If I had any problems breathing or any reactions at all, I was to call 911 immediately and get an ambulance to pick me up. They didn’t think that’d happen though, otherwise they wouldn’t have let me leave.
They sent me home with a prescription of Fragmin blood thinner shots (which was NOT a cheap med). I did my first injection at 2pm today and have to do one every day until they’re gone. They gave me this instead of the more well known Warfarin (aka Coumadin), as I wouldn’t qualify for some of the clinical trials that I could do if the Carbo desensitization doesn’t work if I were on Coumadin.
Thus ends my entertaining end of the week!
(Oh, and on a side note, if you ever have to stay at Methodist Hospital in Rochester, watch out for the food! It’s the worst hospital food I’ve had. I tried the burger and fries, chicken noodle soup, a brownie, a pepperoni pizza, potatoes, corn…all were terrible. The breakfast food (french toast, eggs, bacon) was actually very good. I had that for breakfast on Friday and again for dinner.)
My normal 2 month CT this morning showed that I have a pulmonary embolism (that’s a blood clot in my lungs, for you laypeople). The radiologist sent me directly up to oncology without passing go or collecting $200.
Lisa told me that I would need to be hospitalized and given a heparin shot to thin my blood and get rid of the clot. I also can’t ever do Avastin again, as that probably contributed to the clot. So, here I sit at Methodist Hospital in Rochester.
Once I’m out, I will have to give myself shots in the belly of another blood thinner. It’ll be similar to the Leukine that I used to do, so it shouldn’t be a big deal.
Since I’m in the hospital anyway, Lisa decided to desensitize me to Carboplatin. They’ll start that tomorrow morning and keep me here a second night.
As far as the melanoma goes, the radiologist said he saw small spots in my lungs, a lymph node in my belly, and the existing one in L1 was slightly bigger. Lisa and two oncologists looked at the films and couldn’t see what the radiologist saw, so they’re not positive it’s actually there. But since I was on Taxol only for a month, she says it’s not surprising that it spread a little. She said though that it’s not a huge problem. The return of the Carbo hopefully will take care of that.
If for some reason the desensitization to Carbo doesn’t work, she may put my on a clinical trial of Temozolomide and RK001 (I think), which are both pill drugs that I could take at home.
Since I was at Methodist anyway, Lisa had a pain specialist visit me. He asked about my pain and what medications I’d been on. He recommended OxyContin, an extended release type of Oxycodone, the main ingredient in Percocet. I got one, and it seemed to work pretty well.
That’s all I can think of at the moment. Oh, Lisa apparently found my blog. Luckily I didn’t get in trouble.
After my call to Dr. Sherman on Thursday, I began taking 2 of the morphine sulfates instead of 1.
That night (or rather the next morning) at around 4am, I was watching TV and got up to let the dogs out. After they came in, as I was hanging up my jacket, my back started spasming, nearly taking me to the ground. It wasn’t as bad as what sent me to the ER on December 22nd, but it was close. Once again, the Percocet didn’t do much, but I took some ibuprofen, too, which helped.
I called Dr. Sherman again Friday afternoon. The triage nurse sounded annoyed that I was calling again, but I didn’t want to take the chance of that happening again and not being able to do anything about it until Monday. He talked to Dr. Sherman and called me back. She wants me to continue taking 2 morphine sulfate, and also gave me a prescription for 2mg Dilaudid (aka hydromorphone). I am to take the Dilaudid and stop taking the Percocet. She also said that if I do need to go to the ER that I should go back to St. Francis, as that’s where I went last time and they have my previous scans. Of course, that’s where I’d go anyway, as it’s only a mile from me.
I took the Dilaudid once on Friday night, and it seemed to work. I’m not sure if it knocked me out or I was just really tired, but I fell asleep in my chair for a couple hours.
Strangely, Saturday my back has felt pretty good and I have not had to take any drugs whatsoever. I was quite surprised!
I gave in and called Dr. Sherman’s office and spoke to a triage nurse, who discussed it with Dr. Sherman and called me back. Dr. Sherman said I should try taking 2 of the 15mg morphine sulfate extended release tablets at my next scheduled dose and see how that does. Hopefully the 30mg dose will work better!
Huey Lewis sang…
I want a new drug
One that does what it should
One that wont make me feel too bad
One that wont make me feel too good
The 15mg morphine sulfate extended release that Dr. Sherman prescribed to me has not worked at all. I can’t tell any difference in the level of back pain, which means I continue to have to use the percocet.
Unfortunately, the percocet seems to be less and less effective as time goes on. Several times lately I’ve taken it and it’s barely dented the pain. Other times it dents it but doesn’t fully take it away. Sometimes it works pretty well, but this is becoming less common.
So right now, I have two powerful pain medications that aren’t doing what they should. I have to decide whether to wait a week and talk to Lisa when I go to the Mayo Clinic on March 6th, or if I should call Dr. Sherman now and see if she can give me something else that might work better.
I really really hate having to be dependent on pain medication. It makes me feel like a drug seeker. But the alternative is constant back pain from the chemo or from the tumors, so I guess I’ll deal with that stigma. I’ll ask Lisa about her suggestion of local radiation to relieve the pain when I go to Mayo next week.
Protein shines light on cancer response
A technique that specifically “tags” tumors responding to chemotherapy may offer a new strategy for determining a cancer treatment’s effectiveness within days of starting treatment, according to a new study by Vanderbilt-Ingram Cancer Center investigators.
I had my first treatment with Avastin today. I did the usual pre-meds (to which they added Tylenol, which the nurse said was for the Taxol even though I’d never had that before), then the hour of Taxol, followed by an hour and a half of Avastin. It was uneventful, and boring! I’m used to 30 minutes of Carboplatin (and lately not even that), so the addition of the hour and a half made the appointment seem really long. The bright side is that next time they drop the Avastin to an hour, then the next one to a half hour.
The most important thing I have to watch for with Avastin is numbness. Avastin can occasionally cause blood clots which cause the numbness. If that happens, I have to go to the Emergency Room immediately. The other symptom is nosebleeds, which are a common side effect.
Dr. Sherman refilled my Ambien and Percocet, and also gave me extended release morphine. I can take that twice a day, and use the Percocet for breakthrough pain.
That’s about it! It was mostly uneventful.
Park Nicollet Clinic
The building where Dr. Connelly and Dr. Sherman are is the one northeast of the oval driveway.
Methodist Hospital
This is where I had my neck surgeries.
Mayo Clinic
This one is harder to describe. The building in the middle with the reddish roof is the Gonda Building. On the 10th floor of this building is Oncology, where I am examined and chemo’d. The building north of that (where the words “Mayo Clinic” are) is Rochester Methodist Hospital (as opposed to St. Louis Park Methodist Hospital where I had my surgery). On the west end of the hospital is the Charlton Building, where my radiation therapy and most of my CT scans havebeen. The plus-shaped building to the south of Gonda is the original Mayo Building. South of the Mayo Building (across the street) is the Hilton Building, where the majority of my blood draws take place.
I got a voicemail from Lisa today (while I was sleeping during the day). She said my insurance company told her that no approval was necessary for Avastin if it was administered in a doctor’s office. Yet, someone else she