November 21, 2009

I got good news this week from my doctor. I'm still in remission, which is a relief. I am waiting for my blood counts to rise from the radiation treatment, so I've been getting frequent red cell and platelet transfusions. Once my levels start holding their own, I'll be able to stop going in so often. Right now, I'm in 3 times a week, getting bloodwork and transfusions. Thank goodness for all the people that donate.

Maybe by the end of the Thanksgiving weekend I'll be getting better. Once this stage is over, I'll be visiting the doctor every two months. It'll feel like a vacation.

Everyone have a great Thanksgiving.

Update 11/1/09

This has been one of my tough weeks. While understanding all this treatment will have payoffs, it's getting to me a bit. My platelet count tanked this week. Normal people have 150,000 and up in their blood, mine went from 75,000 to 15,000 in about a week. Since platelets stop bleeding, it is necessary to replace them before there's a problem. I ended up having a platelet transfusion on Friday and may need more. I'll be tested again on Monday to see what's what with my counts. This was expected, but happened sooner than I thought. I certainly would have cut out more fabric if I knew - now I'm at a standstill. No cutting for a while. No sharp objects.

Many of you have asked what you can do for me. Donating platelets or other blood is certainly something that would be beneficial to not only me, but others at MDA that need it.

October 18, 2009

It's been about 2 1/2 weeks since I got my radiation. I really didn't expect it to be too tough, but I was wrong. The fatigue has really gotten to me. After months of not being able to sleep, that's about all I can do these days. I forced myself to get off the couch today and take a bike ride - 6 miles was all I could handle. Quite a difference from my pre-diagnosis days.

Blood counts are dropping rapidly, as expected. I can hardly wait till it hits bottom (not really). At that point, I won't be able to cut anything, ride my bike or even shave my legs for fear of bleeding. The roughest part so far was having to stay away from Quilt Festival this year because of the crowds. Boy, will I make up for it next year.

Glowing

I had my preliminary targeted radiation on Wednesday. It went well - unless I hear otherwise, we're good to go on the full dosage on the 30th. It makes you a little nervous when the nurse comes in with a lead vest and lead container with your "cocktail". I guess I'll be dangerous to pregnant women and children for a week after getting it. I'll be sleeping alone in the guest bedroom for a week. No one wants to be around me! Luckily, the nurses are pretty fabulous and joked around with me to help get me through it. I won't lie, I'm probably one of the bigger chickens around and this stuff freaks me out.

I'll hang out at the house and get my strength up for Wednesday, then full speed ahead. It will take pretty much through the end of the year before I am back on track with my blood counts, so it should be an interesting Thanksgiving. No turkey carving for me.

Next Phase

I'm on to my next phase of treatment, which means a type of radiation treatment. I will get a test dose tomorrow to see if it is going to all the right places, and if so, they will give me a full dosage next week. This radiation is targeted, and will follow a dose of a monoclonal antibody, which I've had with my chemo treatments. The radiation will follow this antibody directly to my b-cells, which is where I have problems. I will have about 3 months of anticipated problems with blood counts because the radiation will be destroying my b-cells in my bone marrow. The goal is to give me a longer remission period. I was tested today and my counts are all good to go, so onward with this phase.

R&R

I've been enjoying my time away from any treatment. We went to LA for my nephew's wedding and will go east to see grandkids, daughter, brothers and in-laws in a week. Then I'll do a weekend retreat to quilt. It's very liberating not to be tied to medications or treatments for a while. I'll be back at MD Anderson to do the radiation in late September, but until then, freedom. After that, I'll be restricted from traveling again probably until around Christmas.

I'm back biking regularly, which is great. I really missed it. I certainly am not back to pre-diagnosis distance, but doing well. I just wanted to update everyone since it has been a while since my last posting.

Success

I received my results from all the testing and I am in complete remission. The team at MD Anderson have done a fabulous job ridding my body of cancer - they are awesome.

I'll still have my maintenance drugs for the next year as well as the radiation treatment in late September. These should help keep me cancer free for a longer period of time. Lymphoma can be a bit pesky and return, so I will be retested every 4 months for two years and then that regimen will get reduced, but I will always have to be monitored.

My success has in no small part due to the support of all of my wonderful friends and family sending encouragement, offers of food, flowers and lots of spiritual support. Ted has been Mr. Wonderful, taking good care of me through all of this. You all have made a difference and helped me fight this disease. Thank you all for that.

With love and hope,
Marilyn

Testing Completed 7/23/09

After 11 hours at MDA, I finished my testing yesterday to check to see how my treatment is working. Boy, it is the best place to go for cancer, but they sure know how to check every part of your body, and that's not in a good way! I decided this time not to try to be tough, and got anesthetized for my bone marrow biopsy. What a difference - I woke up sore, but did not have to deal with the trauma of it all. If any of you ever have to do one - take the easy route.

I'll know what all the tests reveal next week and see where my treatment goes from there. If all is well, I'll continue my targeted monoclonal antibody therapy and do my targeted radioimmunotherapy (radiation) maybe in late September. These two drugs work together and just go after my B cells in my blood, which are causing me all my problems. It should help keep the disease in remission.

Keep your fingers and toes crossed that I have good news next week. I'll let y'all know.

June 26, 2009 Update

Well, today is my last chemotherapy treatment. I am very happy to be able to say that. Will have some recovery time, then get restaged in a few weeks to ensure the lymphoma is under control. After that, I'll get a couple of months off before I continue my monocolonal antibody treatment and get my one time targeted radiation therapy sometime late in September. Right now, the doctor is very pleased with my progress and I feel extremely positive about how things are going.

Because I'll have 60 days with no treatments and no meds, I'll be able to travel and see the family beginning in August. I have a trip to LA for my nephew Michah's wedding and also want to go east and see grandkids, daughter and brothers. After September, I'll be grounded again for a while, so I have to make the most of my time.

June 6, 2009 Update

I finished the 3rd round of chemo a week ago Friday. As I had heard before, the cumulative effect gets a bit worse with each time, and that seems to be the case. I've been extremely tired this time, but am now coming out of my haze. Since I know that the treatment is working, it's much easier to accept the side effects. Everyone has been really supportive, and I thank you all for that. I still have hair, although the color is much different - no, it didn't grow in a different color, I just can't dye it anymore.

The next schedule begins on the 24th if all is right with the world. After that, I'll have a break from everything and can travel for a few weeks before my radio-immunotherapy begins, probably in September. After that, I'll be Houston bound until Christmastime.

Ted is being very good to me and is now getting the training to volunteer at M.D. Anderson playing the piano in some of the public areas in the hospital. He has also given platelets a couple of times and will continue doing that too. I encourage any of you that have the temperament to give blood, do so when you can. There are lots of cancer patients and others that are in need. Dogs and cats are hovering around me all the time, so I am never without companionship. Even the mean cat Mellie is cuddling up with me.

Progress Update

I know it's been a while since I last updated everyone on my progress. I was waiting for the results of my testing from last week. I have fantastic news. The treatments are definitely working and the size of my tumors have been reduced by about 50% and my bone marrow is now cancer free. The doctor was very happy and said I am doing better than average at this stage in my treatment plan.

I'll resume my chemotherapy next Wednesday. My platelets are still low, but no longer a big worry since it seems to be the way the disease affects me. I've gotten a little cold, so we're waiting a week to get better from that and give the platelets some extra time to rebound.

All in all, a great day.

2 Down

Since my wonderful doctor gave me the go-ahead for treatment, I've now finished round 2 tonight. It's good to have that done and in a few weeks, I'll be able to get testing done to see if this is beginning to work. I feel pretty decent considering. I'm trying to be somewhat normal and get around as much as possible. I've been working pretty much full time until I started back on chemo, and hope to resume that pretty quickly.

My buddy Kathy L. made up some wristbands that say "Marilyn we luv ya" and I wear mine every day. Knowing I have the support and love of so many keeps my spirits up. Keep up all your positive thoughts and prayers.

Back in the Saddle

I've been give approval to begin my 2nd round of treatment after a couple of weeks worth of waiting. My platelets have never fully recovered, but it is probably due to the cancer in the spleen, so we need to continue treatment to fix that. Hopefully, this round will resolve that problem. I have a super doctor who is fully committed to getting me all in remission.

I started my chemo yesterday and will have a treatment today and tomorrow too. In a few weeks we'll check to see how things are progressing. So far, I'm feeling pretty good, so keep your fingers crossed.

M

Change in Plan

I was all ready to go on Wednesday for the chemo, but was told my platelet level was too low to proceed. Other blood levels were much improved though. I will get rechecked on the the 15th and hopefully begin the treatment on Thursday. In one respect it was a disappointment, cause I was ready to go, on another level, it's nice to feel good for a week.

Ted and I are going biking today, which will feel really good. I know I'm seriously out of shape, and will probably not get far, but to be able to do it will be a nice outlet.

Happy Passover and Happy Easter everyone.

Coming up to Round 2

I'll begin my second round of chemo starting Wednesday, April 8. I've been feeling good and getting to work for full days. I go home tired, but not too bad and it is nice to be busy. While I don't really look forward to the chemo itself, it will be the halfway marker. After this, I'll be able to get an idea of if my treatment is working.

My quilting buddies have given me a beautiful friendship quilt to help me get through the coming months. It is filled with love and good wishes and is an inspiration. I have already made use of it in the ER and it is wonderful. Blocks have come from all over Texas plus as far as the Netherlands! I also have been given a prayer quilt that is made out of the leftover scraps that I have hung in my office. Stop by and tie a knot if you are nearby. Keep all the good thoughts and prayers coming. They give me lots of encouragement and hope.

This weekend has been nice - for once I haven't been in the ER for anything. Ted and I celebrated our 28th anniversary by going out for dinner. It feels great to do something normal.

My blood counts have been pretty low, so it prevents me from doing some things I enjoy. While I can't ride my bike right now, I am able to go walking. The dogs are very happy about that. Biking is the one activity I really miss.

First Go-Round Completed

As of last night, I have completed my first full chemo round. This one had an extra step this Wednesday of the monoclonal antibody drug I also had last week. It went smoothly this week, with no reactions, which was nice. The day was very long again and we made it home after about 12 1/2 hours. Yikes. I got my first bloodwork results back, and things looked just where they were expected to be after the chemo got started. I'll keep getting tested each week to ensure my blood counts don't fall below a certain level.

I need to learn about moderation - I've never been really good at it. After going into work a couple of times this week, I definitely learned you don't stay until you start getting tired - by then it's too late. I am walking a bit but haven't yet gotten back onto the bicycle. I miss those long rides. I've started reading Lance Armstrong's book about cancer and cycling and it's really inspiring. While I am not a serious biker, I know he has the same connection. I'm about a third through and it is really good.

I've had several friends bringing over dinners to help us and it is truly a gift. Ted and I are both so grateful that we don't have to deal with that - we just sit down and eat. Thanks to you all that have signed up for meals and those that have offered. I have a tentative treatment schedule, so as it gets closer, I'll get any other requests posted on the Lotsa Helping Hands site. Thanks friends and family.

Update Friday the 13th

I'm doing well and not feeling too bad after 3 days of treatment. Tomorrow will be my last day this week. I go again on Wednesday for a long day, then 2 weeks off for good behavior. My next round will begin on April 8th. I hear as treatment progresses, I may not feel as good, but we'll wait and see. Ted passed his test today on taking care of my CVC line, which was a big deal. He's working as hard as me with all of this.

Family and friends have rallied and been wonderful to me. I feel so blessed to hear from everyone, some that I haven't spoken to in many years.

My brother Maynard sent me my first cancer related gift and I'll post a photo for you to see.

Starting Chemo

I got started yesterday. It was certainly a long day - we got home around 9:00PM after being there all day. Saw the doctor, did labs, then over 8 hours getting my first drug. I did pretty well, with only a small reaction, which they quickly handled.The next 3 days will be much shorter - I should be able to get out in less than a few hours.

While I was extremely nervous getting started, I calmed down as the day went on. I thought I could get emails in the room, but it wouldn't go through properly. Spent my time reading, sleeping, watching TV and doing Suduku puzzles.

Looking forward to getting done with this round on Saturday. See ya'll later.

Results and Plan

I met with my doctor and others at MD Anderson today. They confirmed that I have a indolent form of b-cell Lymphoma (Non-Hodgkins), which basically means it is a slow growing form of the disease. I've probably had it for some time and just didn't know it. It is in my bone marrow as well as spleen and lymph nodes.

Treatment will begin next week and believe it or not could last well over a year with follow-up treatments. The first stage will be several days of chemo every few weeks for several months. I still have to decide whether I want to participate in a clinical trial, so I've got a little to think about. The doctor is encouraging it because it should give me a better chance for remission.

I've got some reading to do about the trial and dealing with the chemo and am waiting for my schedule. I will be setting up a site for those of you that have offered to help. As soon as I have my schedule, I will be emailing those that have offered.

I'm going to try learning all types of techniques to help me handle the treatments and hope they help, or else I feel very sorry for the poor staff that is going to have to deal with me!

Thanks for caring.

Testing Completed

I've finally finished all of my tests and can spend the weekend recuperating from them. The bone marrow biopsy and aspiration was pretty nasty and my tuchas is still smarting from it.

I must be getting good at this cause this last day of testing I didn't even take any happy pills. I'll have a week and a half off before I get the word from the doctor, so it will be nice to have the time off. By then the black and blue marks may be gone.

I am awed by some of the patients that I have met. Young and old, they are all fighting cancer. I sat with a 5 year old boy today that was doing better with his IV than I was. (That's not hard, but he was great.) If there are positives to all of this, the people I am meeting are definitely wonderful. Ted is also meeting a lot of family members while he waits for me and has the same experience.

That's all for now. Have a great weekend.

Day 1 at MD Anderson

Ted and I spent the entire day at MD Anderson getting registered, checked, bloodwork and xrays. We spent some time with the doctor and developed the plan for finalizing my type of Lymphoma. I've got a bone marrow biopsy, CT scan of everything, a heart scan and a few other things to do. On March 4th I will get the final word on everything and we'll have the plan to get started on the chemo.

The hospital was incredible. It is huge, but everyone that came in contact with me was nice, caring and answered every possible question. The floor I was on was strictly for Lymphoma and Myeloma patients, and there are a bunch of us! I feel very good about their ability to help me and am really looking forward to starting my treatment.

Keep checking on this blog for updates. Thanks everyone for all the positive thoughts.

MD Anderson

It looks like the stars are aligned properly because I was able to get an appointment very quickly at MD Anderson for evaluation in their Lymphoma Department. I'll be there on Wednesday to see them. I was lucky enough to get an appointment with the head of the department. I am looking forward to seeing what it's like there since it is so highly regarded for cancer treatment.

Here we go.

Since my preliminary diagnosis of lymphoma last week, I've been having more fun than I can stand. After a PET scan and biopsy, I've found out that in fact, I do have Non-Hodgkin's Lymphoma, just still a little confused about the specifics of it. I have to do another biopsy of an entire lymph node to find out more. My body lit up all over my PET scan with lots of cancer -kinda like a Jewish Christmas tree. Chemo will start soon - I guess I could have skipped going to Weight Watchers. Anyway, thanks everyone for caring and I'll try to keep everyone updated here. Check back for more later.

Love you all.

M