Almost 2 years old

A visit with Dale's primary care provider yesterday, confirmed that he still needs to rest as much as possible. Although he may look fine, a bone marrow transplant coupled with 1300 hours of chemotherapy takes time to sort of getting back to "normal." He will never be really heathy, just a bit better than the day before, hopefully. Chemotherapy, by itself, is cruel to the body, and Dale deals with those effects daily. He goes in small increments of time, rests, and tries again. He paces himself in his daily tasks he choses to do, but can't be expected to do much.

Dale will have the quarterly tests and check ups in the next few weeks as he approaches the two year make since transplant.

Plenty of days ahead.

One week before Halloween, Dale had a cold. He stayed home, rested, and coughed. This has lasted for about three weeks now. He is up most of the night coughing, is tired all day, and finds his depressions setting in again. Dale began to number his days. He is able to go on small errands to get out a bit, but not much. He begins the day with a glimmer of hope, yet as the day progresses, he has felt weaker.

Yesterday, he finally took himself to the ER. Pneumonia? No. Cancer? No. Anemia? No. Bronchitis? No. Whooping cough? Maybe. Doctor ordered tests for it and when they came to his room, the technicians turned around and said, "Sorry, wrong room," then went out the door only to come back. "Oh, it is usually children we do for whooping cough!" True, however, Dale's immune system is not even two years old yet.

I don't know test results yet for whooping cough, but I suspect, no also. It just takes Dale forever to heal from any ailments now a days. He forgets that he is only 22 months old.

Wall of Dale

Last week Dale had another cancer check up that was successful. Blood levels are fine, platelets a bit low, but okay. It is always nice to verify hopes of continued remission. On a day to day note, his discomforts may stem from other health issues or effects of chemotherapy, (we don't know) however, he continues to find joy in life.

He had his formal retirement from his civilian government position a few days before the cancer check up appointment. Although it happened to be on the same day the government closed down, about 100 people showed up to the retirement ceremony. As we entered the base, he was saluted, bringing a smile to me, and wonderment to his grandchildren as they followed us inside the entrance gates. It was a great experience and he was honored well. We now have a "Wall of Dale" displaying his recognitions in military and civilian service. Pretty astonishing. The commander gave a special salute to him, impressing the grandchildren in attendance.

Two years ago, we did not know if he would make it this far. He did, thanks to all who helped us both. We appreciate everyone in attendance and their continued friendships. I looked at the audience, and thought to myself, "These are the community members that have sustained MyDale for many years. Oh dear....now it is up to me!"

All is well!

After the tests yesterday and today, the cancer doctor says Dale is all clear and doing well! Three months and another check-up, and then that is about it. His check-ups get further and further apart and at the two year mark, one more immunization shot and he is done with those. We congratulated the doctor on her great work and said thank you!

Now, his other ailments are forefront and will be addressed with primary care doctor. Primary care doctor versus cancer doctor--big difference. Life is good, and moving onward.

Life is good, and moving onward. 

Retired

No more 3 AM mornings. No more van pools. No more of it all. We drove to a small town three hours away for a school thing I needed to do on Dale's first day of retirement. As we sat at the lunch table, Dale quietly looked around, and said, "so this is what retirement is like?" Yup. Simple pleasures.

Much healing should come with good night's rests and work stresses gone. 

Blacking out and stumbling

In a couple of weeks, Dale will have his six month check-up with all the tests, lungs, blood works, PET Scan, perhaps bone biopsy, heart, and anything else they think he may need. He seems weaker daily and reports he that feels like he is smothering and has painful legs and feet. My main concern comes from another incident.

As we walked home from church yesterday, (about a block away) Dale stumbled and blacked out or blacked out and stumbled. I do not know which came first. He rolled down onto the grass, however, he was out for a few seconds. Although the color did not leave his face and he recouped quickly, it is never a good thing when one passes out. I was able to help him get up off the ground and home, but he felt light headed the rest of the day and slept several hours after the incident. He remained home Monday, making it without incident but he slept many hours of the day.

Dale's weakened state concerns me and panics him. If more happens before next doctor's tests, I will write again, but I anticipate more of the same, just a bit worse, and suspicious test results.

We can do this

Another wife of a mantle cell lymphoma patient contacted me through the blog this past weekend.  There are many people searching for hope, understanding, and support from others in similar circumstances. Each has a different journey through the cancer, but all hold on to hope. The research has come a long ways, with each patient contributing to the next patient's treatment regime. Research is possible and necessary.

Dale continues to do more than he can/should every day. His sense of urgency increases daily. We are making progress on his Bucket List, to which I am grateful, as is he. We enjoy time together and have made forward decisions that are working well for our unknown future. Simplify, de-clutter, prepare, and enjoy what we have.

Health continues to be so-so. Shortness of breath, fatigue, diarrhea two-three times a week, and pain in feet and legs.  His six month check up will be in a few weeks with all the cancer tests. He is a bit anxious about the results and frequently reports he "feels like I did before I knew I had cancer." I will report when I have results. In the mean time, people looking for mantle cell answers and hope, know you are not alone. We can do this.

Leg cramps

Dale is always tired. He has frequent leg cramps, difficulty breathing, and trouble with the constant pain in his bones. Today he has a fever, has chilled, and slept most of the day. Yesterday he had another round of the immunization shots which we believe, may be the cause of the fever.  What do we know?

He is so fragile! I don't understand the pain in his bones. Is it due to lack of oxygen? Is it because his transplant doing weird things? Dale's health is such a mess. His emotions are tuned to certain things that I call his bucket list. His feelings of urgency to accomplish these things increases with each day of pain. In other words, he feels his days are numbered. Of course, I have no idea of that number, but appreciate the decisions we are making before WE can't make them any more.

Small steps forward

I receive an occasional email from blog followers out there in cyber-land. Unfortunately, mantle cell lymphoma is active in these people's lives. I am sorry, yet it also brings a certain level of hope. We are not alone in this journey of cancer. The past almost two years is full of lessons learned, people appreciated, and a roller coaster of emotions.

I am typically asked what medications he was on, treatment protocol, and bone marrow type. I apologize for not reporting medical names of Dale's treatment. It does not really matter to me what the medical terms are, just that it has worked so far. No doctor asked us to consult with them in medical jargon, or gave Dale an opportunity to suggest another chemotherapy schedule. He received treatment, I report, repeat. I feel as the caretaker, my focus is on the care of patient, only. His bone marrow transplant, by the way, came from his own stem cells, harvested at an optimal time is his treatment, frozen, and then given back to him for the transplant.

Health report since last couple of posts is reasonably fine. University lab work showed nothing scary. No treatments other than extended seven days of antibiotics. That ended two days ago and he seems okay. That does not mean he is well, just no fevers. I am a bit anxious about a lingering infection that may manifest itself again. He goes to work each day, comes home and crashes, exhausted. He feels light-headed, fatigued, and reports muscle aches and cramping. His chest hurts and he reports that he feels he is suffocating.

Although he is stubborn enough to carry on with his agenda, he does not feel like doing much. We went to a movie this afternoon and enjoyed it. He wants me to feel as though some things are a little normal. Seeing through my Polly Anna eyes, we are okay. Small steps are taken for the next stages in our lives, however, they are steps forward.

Infections and bone marrow transplant patients don't go well together

Dale went to his quarterly checkup at Huntsman today. Good news is that the blood work is okay and remission continues. Bad news is the infection he has is a great concern. They took more blood cultures for University labs to analyze. It takes the cultures 2-5 days before definitive results begin to show up. In the meantime, Dale will continue with the anti-biotics since the infection is a vicious one and will take over Dale's fragile system and he will not survive. Doctor was quite concerned and is consulting with infectious disease specialists for his treatment. The infection has scattered throughout his body, explaining his overall aches and pains, but at this point, does not have an origin. The medication is assisting Dale's system to fight it, because without the daily dose of the anti-biotic, Dale's body will not be able to survive. His immunity system is compromised and vulnerable to infections like whatever it is he has.

Fortunately, it is in control for now. I trust their treatment plan will come quickly and Dale will be fine.

Sometimes we forget how frail he is and want to forget the many hours of treatment.

Streptococcus Pneumonia

It isn't good when the ER calls you to come back. Two days after Dale's initial visit to the ER and enough time for the lab results in the blood cultures indicated that he has Streptococcus Pneumonia. They gave him an IV anti-biotic and sent us home with a prescription for more anti-biotics. This makes sense. He battled fevers for the last three days, felt totally lousy, and now we know, more so, why. This  is emotionally very difficult for him. I believe I understand and will continue to keep the peace around here.

Fever & chills

Dale came home early from work on Monday due to his vomiting, diarrhea, and fatigue.  He took Frontrunner and then TRAX where I could meet him to take him home. He attempted to work Tuesday but was very weak and tired and could not get his "engine running". Vomiting and diarrhea continued with beleaguered breathing and nasal problems. Dale attempted to do some work from home both on Tuesday and Wednesday. He is quite discouraged as he feels he has let his work team down. 

Wednesday, Dale's condition worsened as the day continued with a fever (102) and light-headedness. Time to visit the ER. After many tests and blood works (and hours!), the ER reported that he probably has a virus and needs to be very careful due to his fragile state of health. He is released from ER however is not to go to work and needs rest through the weekend protecting him from exasperated complications. 

During the night, Dale woke up with extreme chills, although he had a heated blanket and plenty of bedding to keep warm. This concerns me as I am much too familiar with such symptoms and where they took us just about 2 years ago at cancer diagnosis. After reading the ER release notes, it explained chilling and fevers; fever is trying to increase when chills set in. Fever is trying to cool down when sweats are prevalent. I think the body is just confused, hurting, and sick. Regardless, a fever is a symptom of something going (gone) wrong. 

It takes Dale a long time to recover from any illness he picks up. My editorial on this week's health conditions: When Dale picks up some virus (flu, allergies, cold, etc.) that the rest of us get over in 1 or 2 days, Dale's compromised system exasperates the symptoms and he becomes quite ill. His body is doing the best it can to heal, however, it is still pretty fragile.

Cancer quarterly checkup next week. 

Supporting always

Either high stress, depression, or cancer has caused Dale's ailments in the past several weeks. All probably contribute. Work (just another couple of months until retirement) causes much of the stress, however, he goes faithfully each day whether or not he feels well enough to go. Depression, another one of those ongoing conditions that I am clueless about, although Dale has plenty of reasons to be depressed. The thing is, though, there are plenty of reason not to be depressed! Another year of life granted. Retirement really almost there. In fact, having a job/career is a blessing in itself now-a-day. Because of his fragile health, mental state, and short-timer life condition, I say a lot of "Okay." "What can I do for you?" "Are you comfortable?"  "Do you need anything?" I add some, "I love you" too.

And then there is the cancer thing. His symptoms was simply tiredness before diagnosis. He still is, but add in the consistent diarrhea, and new to the list is vomiting a few times a day. He does not report fevers, blood pressure is okay, and he seems to make it through each day, except he needs lots and lots of rest. His day ends about 5:30 PM if not earlier. He gets up at 3:30 AM, which will come to an end in just a few months! We are making slow progress on some of the things in the Bucket List and adjustments to other lists.

I feel pretty helpless right now, because it could be cancer, but it could be stress and depression. I have decided, it does not matter. He needs support and he needs lots of it. That would be me.

Good to be boring

It is Valentine's day today and I thought I would cook dinner for us tonight instead of asking to go out and rustle with crowds. I fixed what I thought was an okay meal, Dale politely ate what he could muster eating, and quietly went to bed. He watched TV for about 20 minutes before the TV went off and he was gone...and it was only 5:30 PM by then. Oh well. Such is the romance for the week!

Last year, our front door was attacked, heart attacked to be exact. Neighbors plastered it with Valentines and thoughts of care, hope, and love. We have come a long ways since then. We are back to normal. Go to work, eat, sleep. Go to work, eat, sleep. Go to work, clean house, eat, sleep. Repeat.

However, it is good to be boring.

Bone marrow transplant one-year report

Saturday, January 5th, was Dale's one year bone marrow transplant birthday. In the past two weeks he completed several health tests checking levels and that he is still in remission. PET scan, lungs, hearth, blood test, etc. all indicated he is doing okay. Okay means that he has a small spot by one lymph node. It is enough to mention, yet not to be concerned with-yet. His lungs function at about 68% which is down from previous tests. He will continue to be on the 90 day check ups to keep ahead of the cancer for at least another year.

The BMT doctor reiterated that most (over 50%) mantle cell lymphoma patients have a relapse in the first two years after transplant. Once it comes back, he will need a bone marrow transplant donor since the auto-transplant won't work. His system will be too compromised and its immune system will need help from a donor. Until that point, we continue with every day stuff.

Dale was pleased with the report, however, I can see why he feels an urgency to work on his bucket list.