Karl has cancer. We are still in the shock mode as we just found out on Wednesday of last week. They found it by accident when doing another test. His doctor then sent him for a PET scan as they found something suspicious and it came back that he has lymphoma. I honestly didn’t think he had anything as I didn’t think God would give him another illness when he had so many already. I didn’t know there were so many specialists for so many parts of the body until I married Karl. I only just recently started taking a pill a week and Karl might as well pour milk over his medicine and call it breakfast. Meeting with Dr. Gupta was not much fun either. He is a specialist and came highly recommended but he is so hard to understand and didn’t have the answers I wanted. I want answers now-I hate waiting.

I asked him if we should cancel our cruise that is scheduled for April 1 and he said no. I do hope he is right.

He scheduled a bone marrow biopsy for Karl for today and told us we would have the results on Friday. I went with Karl but when the doctor was delayed more than an hour I had to go back to work. Karl said the test wasn’t as bad as he thought it would be and that his back hurt worse. (He wrenched his back on Sunday and has been in pain since).

He left and now they say they won’t know until Tuesday. I’ve asked Karl to call and see if he can get the results earlier. We want it to come back negative. Our wedding anniversary is Friday and it would be the best present ever. If (when) it comes back negative he then has to have a biopsy to determine what kind of lymphoma it is. Then we should know what stage but right now they think it is Stage 3-please pray that it is not worse.

I honestly don’t know how people do this. I’m an emotional wreck and seem to cry at the slightest thing. I feel so sorry for Karl and at the same time angry. I don’t even know why as it isn’t his fault. I am at the point that I hate it when the phone rings as it is another doctor calling wanting to do another test.

I really admire Matt and Donna Logan. They are going through so much but are so strong in doing this. I need the strength. Roger Klein has been a blessing as I’ve been able to call him and cry and share. I want answers! I don’t want to wait. I want Karl fixed and able to live a wonderful and productive life. I guess I want the world!

Feb 9, 2005

Karl had the family physician call him at home today. I couldn’t believe that a doctor would call to see how he was feeling and dealing with everything. It really made both of us feel good.

After a little pushing from me, Karl called the doctor’s office. The nurse told him that they would call as soon as they got the results-good, bad, or indifferent. She said the appointment for Tuesday was to make a plan of action. This does make me feel better. As afraid as I am to know the results I don’t want to wait. I want action; I want something to be done. I want to know that Karl is getting the best of care and fast. I can’t help but think that the longer we wait that the larger the cancer is becoming.

I wonder when he first did get this. How long has it been in his body? That is something I will probably never know.

Reading this back to myself and have decided that I definitely have the "I" disease. I’m not writing about Karl and what he is feeling. Then I decided that this is my journal about my feelings and that Karl should do one on his own.

Dick Lenney called me today. That really surprised me. He had heard through David-Brian-about Karl and wanted to call and give us encouragement. That made me cry as it is hard to talk about without getting emotional.

I am continuing to pray and hope for the best. It is time for Karl to have something good happen to him.

Feb 13, 2005

Friday was not a good day for me. I was on pins and needles waiting to hear what the heart doctor said about Karl and what the bone marrow biopsy results would be. I must have called home 100 times to see if there was a message on the machine.

Karl does have a weird heart beat and they gave him another medication to use. It is apparently nothing to be overly concerned with at this point. We have enough to worry about so I have chosen to not worry about that.

We did get good news. It is not in the bone marrow! Karl said that the doctor seemed surprised as well, as Karl has about a dozen growths that showed up in his PET scan. The doctor wants to wait to do a biopsy! This concerns me. I’m not good at waiting and want to know the results right now. I want treatment to start now. Karl seems okay with it but I’m not. The doctor apparently consulted with the radiologist and the surgeon and they want to wait six weeks and have another PET scan. They want to wait because Karl doesn’t have any other symptoms of lymphoma. He is going to call his regular doctor to see what he thinks about this. I don’t want to wait—but it is not my body.

The kidney specialist also called Karl. He has E.Coli. The doctor is doing another culture and them prescribing more medicine for Karl. I swear he might as well poor milk over his medicine and call it breakfast. I wonder how many calories all his medicine has.

We have been upbeat all weekend because it is not in the bone marrow. We both feel like a huge weight has been lifted off. I still want answers though. I don’t want to wait for treatment. Karl still has cancer and I want it taken care of. I don’t know how people get through this-this is really hard.

Feb 26, 2005

Just when I think things are starting to look up something else happens. Karl and I went to his doctor on Thursday afternoon. He closed the door, set down, and told us that they had done further testing on Karl’s bone marrow and the second type of test showed something suspicious. He wants to do a CAT scan and not until March 7. Then we wait for the results of that and probably have another bone marrow test. I left very upset and puzzled as I thought that the next step was going to be a biopsy. I want to know what is going on and get the treatment started. Karl is by far more patient than I am and it is his body. He looks at this as good and I look at this as worse than before. Karl seems to feel that it is going to show nothing this time-I do hope that he doesn’t get his hopes up. I want it to be nothing of course but I’m afraid that he will be too crushed if it isn’t. He seems to think that since he had an infection that it showed up as a false positive (for lack of a better term). I’m terrified and afraid of what is going to happen.

The doctor is taking everything slowly and I don’t want whatever it is to be growing while all this testing is taking place. He doesn’t want to do a biopsy as it is a surgical procedure for Karl because of the location of all the growths. It sounds to me like it is going to be another month or so before we know what is going on with his body. We don’t even know what kind of lymphoma it is. I want treatment to start. I want to get this show on the road. Karl does not have any symptoms so at least that is good.

The E.Coli has been treated. Karl did say that he is feeling better that way at least. I guess I will write more when I know more.

March 11, 2005

Karl got the results of his CAT scan yesterday. It shows activity in his groin, stomach and near his heart. He had to suffer through another bone marrow test today and we get the results next Friday. We want it to be negative. If it is then he has a biopsy of the one in his groin as it is easier to get to. He still doesn’t have any symptoms so it is difficult to diagnose. We are hoping it is something else and the doctor did say that is possible. I know Karl hoped the CAT scan would come back normal-but it didn’t. All of the nodes are small-the largest being 1.5 cm. The doctor said it appears to be slow growing but we are still terrified.

The roller coaster ride has been difficult. I don’t know how Karl stands it-life is going on but it isn’t easy. If it is the type that the doctor thinks it is it is slow growing but usually not curable-I don’t know what to think—we want answers and treatment.

More later.

March 20, 2005

Karl had another bone marrow test. The results were the same and now he finally has a biopsy scheduled for Tuesday. If that comes back negative he is sending Karl to the City of Hope for further evaluation. He said that just because one is negative doesn’t mean all of them are negative. We get the results of this on Friday. Waiting has been so hard, for me I think it is probably the worst part. Once we know then action can begin. If he had not had the other test-found it by accident-it could be even more widespread as Karl still doesn’t have symptoms. He is also getting a weird growth removed from his leg near his groin. They don’t think it is related but why take chances. We still haven’t told his mother or brother. I’m dreading that but know reason to say anything until we know exactly what is going on.

I asked Karl what he would think if his is the wait and watch type. He said it wouldn’t bother him as long as he is being monitored. I guess that would be okay but it still concerns me.

He said he wants his treatment to be at the City of Hope.

March 30, 2005

Today has not been easy. I don’t know if I like the Internet-it really tells you like it is-Karl might never get better and we won’t know.

His doctor didn’t tell him much on Tuesday. Said he wanted to refer Karl to the City of Hope as there are so many treatments. A little scary even though that is what we wanted. Karl was very sore this week from his biopsy, he can hardly walk. He is also really swollen so has been spending a lot of time with the heating pad. The surgeon checked Karl today and told him that he probably wasn’t a candidate for "wait and watch" as he has too many in to many locations. We had always thought that it was good that they were small.

We have been warned that going to the City of Hope is going to be scary as they give you all sorts of data and ask all sorts of questions. I am so scared and trying to be brave for Karl-it isn’t easy. Life has not been fair to Karl-heart problems, diabetic, foot problems, more heart problems, and now cancer. Just when he is getting ready to retire and enjoy life this happens. On top of all of this we now owe $2000 on our taxes. Sometimes I really wonder-if I make so much money that I have to pay more why am I always broke?

Can’t wait for this nightmare to be over. Our life is revolving around doctor appointments. I’m feeling sorry for myself and really should be more concerned about poor Karl and how he is feeling.

We are going on a three day cruise on Friday and boy do we need it. We should have great weather and some fun.

April 11, 2005

The cruise was wonderful. We needed a break and had a wonderful time. The downfall was that Karl’s incision on his leg came open and drained. We really took it easy as we didn’t want anything else to happen. The doctor on board said there was nothing they could do for it. He had his doctor look at it and he wasn’t overly concerned and said it would close with time.

We did go to the City of Hope and came away confused, upset, and optimistic all at the same time. The doctor said that even though Karl had cancer in several places that it wasn’t a lot of cancer. He said that it was a grade 3a and probably a stage 3a. It is slow growing and with the follicular lymphoma he was comfortable with either wait and watch or treating with rituxan. We were feeling good until he showed us the report that said he also had Hodgkin’s. We are waiting on another report on that as he said that was extremely rare for that to happen. We thought we would get the report today but found out that the specimen didn’t get to the hospital until today and we would know more tomorrow. If he does have Hodgkin’s then he will need chemo as well.

I drove Karl crazy calling him today. We are so anxious to get the results and for him to start treatment. The roller coaster ride is getting to both of us.

April 30, 2005

A couple of weeks ago we thought we had good news. The doctor called and said that he doesn’t have Hodgkins, and it doesn’t look like he has follicular. He said it looked like Karl had reactive follicular hyperplasia! If it weren’t for the little bit in his bone marrow we could relax! They wanted to do a follow up in August. Now Karl is having symptoms (night sweats) and they are scheduling it for June instead. It is the last day of school so I might be missing it as Karl might get the results right away.

All of this is driving both of us crazy! We want a firm diagnosis, treatment, and a life. I feel like my entire life is evolving around doctor appointments and phone calls. The only good that has come out of it is that Karl has reached his deductible on his prescriptions and it looks like on his major medical as well! Trust me to try and find a silver lining on this latest development.

I am still praying and being optimistic that all will be okay.

June 16, 2005

Karl has gone in for a bone marrow biopsy. I didn’t go with him as he said he would be fine and they weren’t giving him all the results. They also did the CAT scan. Apparently the doctor was surprised he didn’t have a driver. His other doctor in Corona said he could go straight back to work so we were surprised. Now is the waiting game.

June 22, 2005

We still don’t know anything. They weren’t able to see anything additional in his marrow or the scan. What he does have doesn’t appear to be growing and he still has it in less than 5 percent of his bone marrow. The doctor said the radiologist felt she could do a needle biopsy from the mass near his back to get a diagnosis so that is now being scheduled.

July 6, 2005

Karl had the biopsy without a problem. Now we need to wait for the results. I sure do hope we get them! He did okay with this but is now anxious to get all results.

July 12, 2005

We have the results and they are horrible. He has mantle cell lymphoma and it is the worst type of lymphoma to get. He has not seen the doctor yet but got the results over the phone from the radiologist.

I am now truly terrified. We thought for sure he had follicular lymphoma. Anxious to meet with Dr. Rodriguez.

July 18, 2005

Met with the doctor and he is puzzled. Was very surprised that it is mantle cell. When I asked if an error he said no—the tests were very complete and conclusive.

Because Karl had a CAT scan in 2003 that showed activity (missed by doctor) the doctor said that it is slow growing-not like most mantle cell lymphomas. He is comfortable with a wait and watch protocol at this time. Karl is to see him in October for a physical and blood work. If that comes back good then he’ll see Karl in December for a CAT scan and monitor every three months until Karl needs treatment or symptoms change. This is so scary—not knowing what is going to happen. The good is that it does appear to grow slow-the bad is mantle cell-without a cure and poor remission results.

I’m terrified of what is going to happen to my husband. He is a good man and I love him so much-it is scary to think he has this disease and . . .

July 30, 2005

Karl is outside working. He feels good but I can tell he is worried. He thinks his stomach bulge is caused by the cancer-I don’t-but you can’t tell him anything. He is also tired but hard to tell if that is age, heat, or cancer. I do know that depression can also cause fatigue so I’m wondering if that is some of it. He is very sensitive lately and hard to talk to sometimes. I know he is worried so I deal with it in the best way I can. I’m worried to—I want to plan our retirement-our vacations-our grandchildren (I wish)—

I do hope the tests in October come back good. The longer they can delay treatment the better. Karl is not eligible for some treatments because of his neuropathy and heart condition. What I need to keep reminding myself about is that if it had not been found by accident we would not know he had cancer. His blood work continues to look good. We need to relax and have fun while we can.

August 12, 2005

I just read The Cancer War by Anthony Herrera. My husband has the same cancer he has (MCL) and I was told to read it. I'm not sure if I'm glad I read it or not. It is excellent and it really tells it like it is. When I read this I realize that Karl is in for a long haul--and it terrifies me! So far all is okay for Karl and he is going to be examined again in October. Keep him in your prayers.

Today is his son's birthday.  He doesn't even know Karl has cancer. We haven't seen him in over two years and that is very hard for Karl to deal with. I know Kirk loves Karl-he just needs to get his act together and call.

September 15, 2005

Not much is going on with Karl's cancer at this time-that we know of.  He goes to the doctor in October-so we shall see. Please continue to pray that it is not progressing. He had foot surgery today-he has neuropathy because of his diabetes. They removed a neuroma from his right foot. Hopefully that will help eliminate some of the pain he has in his feet. With Karl never a dull moment!

October 10, 2005

Today we had good news at the doctor's office.  It looks like Karl's blood work is still in normal range and at this point he wants Karl to come back in January for another Cat Scan. No treatment is scheduled at this time as his cancer appears to be indolent.  We found out that it looks like he had this in May 2003. We are so glad that it was missed at that time. We would have been worried all this time and Karl probably would have had treatments that it appears that he doesn't need yet!

We are even looking into opening up a coffee franchise (drive-thru). We have decided that life goes on and we can't live each day as though it were the last but need to get on with our life. The doctor didn't see any reason why we shouldn't do this so--time goes on.

December 22, 2005

This last couple of weeks have been very hard on Karl and I. He started having angina and ended up in the hospital where he had a stent put in one of the arteries leading to his heart.  Hopefully that will correct that problem. His red blood count was really low, the first we heard of that, and they have given him a heavy dose of iron. He also has a wiggly sternum again so the heart surgeon wants a CAT scan.  They decided to move up the cancer CAT scan to tomorrow. I'm a nervous wreck. I'm so tired of sick and tired. I know it is not his fault, but sometimes I can't help how I feel. I do want him to be healthy and happy and it worries me so much that he isn't. I want tomorrow to be okay and for him not to need treatment but I'm afraid that is not going to happen.  Please keep him in your prayers that all is the same and that this horrible disease has not progressed!

December 23, 2005

We are back from City of Hope. The mantle cell has grown a little bit but they are more concerned about his low red blood count. Karl has kidney problems so that could be the cause. They also found something in his lungs. It was not there in June. He has not started treatment. He said it is not typical of mantle cell lymphoma so we now need to see another specialist. I cry if I don't laugh. I can't believe how many specialists Karl sees-it is hard to see what disease is connected to another or if it is just coincidence that all is happening to one man. The doctor said that the cancer is not on any vital organs but depending on what the lungs are up to he might start therapy. It has to be an easy therapy because of all the other medical problems. This is getting to be so hard. We see the doctor again at the end of January. At that point more decisions are going to be made.

December 30, 2005

We saw the pulmonary specialist today and liked him.  He said that he did not feel the need to rush immediately into a biopsy at this point as Karl looked good and wasn't feeling sick.  He had decent test results from what they did as well.  He is going to consult with Karl's onc. and get back to us. He is leaning towards waiting a couple of weeks and doing a CAT or PET scan of the lungs to see if it has changed. Sometimes people can have an infection that shows up in the lungs and goes away by itself.

Karl is going to cardiac rehab and working out under supervision. He will go 36 times. He has gone twice so far and did extremely well.  Hopefully, this next year will bring us good news--2005 sure has stunk!!!