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Cancer

The Dalai Lama is credited with saying this after he was asked what about life surprised him most.

Man. Because he sacrifices his health in order to make money. Then he sacrifices money to recuperate his health. And then he is so anxious about the future that he does not enjoy the present; the result being that he does not live in the present or the future; he lives as if he is never going to die, and then dies having never really lived.

Although I cannot verify that authenticity of this quote, it nevertheless contains exactly my thoughts about life.

Quick links: Round 1, Round 2, Round 3, latest news.

1988 - Round #1

My first personal experience with cancer was back in 1988 when I was diagnosed with breast cancer. I found the lump myself through a self-exam. I knew it was cancer even before going through all of the tests. Somehow my body just knew it.

Against the advice from my surgeon I elected for a lumpectomy rather than a full mastectomy. Luckily my oncologist was very familiar with all of the tests that indicated that a lumpectomy had the same success rate as a mastectomy but was much easier on the body. The only downside was that with a lumpectomy I would be facing five and a half weeks of daily radiation therapy that I would not have to go through if I elected the mastectomy. There was no lymph node involvement so I did not have to have chemotherapy. The radiation treatments were once a day for five and a half weeks. The first few weeks were a piece of cake but gradually I became more and more fatigued. The last week I developed a bad burn but it was treated with a cortisone cream and went away soon after the treatments ended. I was able to continue working throughout the treatment thanks for the generosity of my boss, Phil Becker, who allowed me to come in and leave as I pleased. I missed only the time for the surgery and the last week of radiation.

I elected to take part in the Tamoxifin study which required taking the estrogen blocker drug for five years. It caused early menopause which in my case resulted in extreme hot flashes. At the end of the five year period I threw a huge party for all my friends to celebrate that I was drug free at last. The highlight of the party was letting go of a big bunch of colored balloons and watching them float away in the sky just like my drug side effects were floating away.

2003 - Round #2

Fast forward to my mammogram in September 2003. Like all of my other mammograms since 1988, the results were clean. But in November I found a small lump. This time around I was sure it was just a false alarm, but I went to the doctor anyway. That was where things turned. Not only was it cancer, but this time there were some invasive cells. Because the tumor was in the same breast, lumpectomy was not an option as you cannot receive radiation twice in the same breast. Therefore I was facing a mastectomy and possible chemotherapy. Due to my age and the fact that my self esteem is not connected to the size of my breasts I elected to have both breasts removed, thereby almost guaranteeing that cancer would not return to my breast. The benefits to this decision were that I no longer have to suffer through annual mammograms and I don't need to wear a bra! Some clothes don't fit like they did before, but I am revamping my wardrobe accordingly.

There was a new test available to help determine whether the cancer had spread through the lymph system. In 1988 they removed quite a few lymph glands and luckily I did not suffer from lymphedema (swelling of the arms) as many people do. This time they tried the new sentinel node biopsy. In this procedure they inject some radioactive dye into the tumor site and wait to see which lymph node it goes to first. Then they can biopsy only that node. If it is clear it means the lymph system was not affected. Unfortunately in my case the previous radiation had affected the lymph drainage system in my chest so much that the dye didn't move from the injection site. Because so many lymph nodes had been removed previously it was not an option to remove more, therefore there was no way of knowing whether or not the cancer had spread beyond the breast.

The Ugly Details

Because we did not know whether or not the cancer had spread my oncologist recommended a moderate regimen of chemotherapy, a four month treatment plan using Cytoxan and Epirubicin. These are both very powerful drugs. Because the Epirubicin can affect your heart they first did a mugascan test to be sure my heart was in good enough condition to take the drugs. Of course I passed that test!

The drugs can destroy your veins, so a port was placed in my left chest just under the skin with a tube going directly into a large vein. This allowed them to put the chemo drip right into a major vein which flowed fast enough to dilute the drugs before they could destroy any blood vessels or veins. Unfortunately I got an infection in the port after the first chemo treatment and had to have ten days of antibiotic infusion. Because they couldn't use the port that meant sitting still while the antibiotics dripped into my arm. The first day a vein blew while I was having the treatment. This was by far the most pain I felt through the whole cancer ordeal. Over the weekend I had to go to the hospital for my treatments and they put a thing in my wrist that would stay there and allow them to do the infusion that way. That was so much easier, although it was a little hard to sleep with it in my wrist. The port in my chest also made sleeping quite a challenge. It is about the size of a contact lens case under the skin bulging out. Sleeping on my stomach was impossible.

Lose Weight Instantly!

The double mastectomy surgery wasn't bad at all, I heal quickly. I lost six pounds immediately, that's how much my breast tissue weighed. The worst part was the removal of the drains about a week after surgery. That hurt a lot but it was great to get rid of them. I had the port removed a month after my last treatment. My doctor prefers to leave them in just in case more therapy is needed but I had had more than enough of that thing. Luckily my doctor will listen to what his patients want and not totally dictate what they have to do.

I had chemotherapy treatments once a month for four months. The day after each chemo treatment I went back to the doctor for a an injection of Neulasta, a new drug that helps prevent low white blood cell counts and thus prevent infection. This drug worked very well in my case, when I would be tested again in two weeks all my blood counts were totally normal, even for a healthy person!

The major side effects I suffered were fatigue and a really bad taste in my mouth. I couldn't eat anything with iron in it so that left out steaks and hamburgers. Mac and cheese never tasted so good! I spent a lot of time in bed watching television and sleeping. I was too tired to even turn the pages of a book. Reading is my favorite leisure pastime so that was quite frustrating. I luckily did not suffer from nausea, the new drugs they use now helped keep that away completely in my case. There was a chemo-induced fog that made the colors of the world look very gray. I didn't realize it then, but I was also looking much more gray at the same time. Pictures from that time show a very pale me that I almost don't recognize.

After Treatment

My last chemotherapy treatment was in June 2004, but it took well into August before the mental fog started to clear. I immediately turned to my love of travel and took to the road both for a change of scenery and to escape the prison my house had become. Today my memory of that time is fuzzy at best.

I started taking a new estrogen blocking medication, Arimidex. The side effects for me are much the same as Tamoxifin although I also suffered from pretty extreme fatigue. You are supposed to take it for five years, however I stopped after four years due to the extreme fatigue. After all, I knew that the studies were only that, there is no way to know exactly how long an individual person needs to take the drug and I felt it had done its job.

Lessons

I have taken away some very large lessons which I gladly share with anyone willing to listen. The first and most important lesson to me personally is to live life for today. I spent many years on the traditional corporate path working hard and saving my money for retirement with hopes that I would someday retire and enjoy time to play. I started to notice how many older people have come to that place in their path where retirement should have started only to find their health failing or some other event standing in the way of their freedom. That is why I have made a very big effort to take off and travel around this beautiful country at least several months each year. This is my semi-retirement that allows me to travel while I am still healthy enough to fully enjoy it.

The second lesson, the one that I make a big point to pass on to everyone I can is that my mammogram was clean in September 2003 and I found a lump in November 2003, less than two months later. I don't want to think what would have happened if I had waited until my next annual mammogram to find the lump. Regular self examination may have saved my life. This is my message to every woman, no matter her age.

Self Image: Breasts vs. Hair?

The really odd and totally unexpected part about all of this experience is that I learned it was much harder emotionally for me to lose my hair than it was to lose my breasts. Being bald and having snot-nosed kids at grocery store checkout counters call me Mr. was the thing that exposed my deepest feelings about myself even more than looking in the bathroom mirror in the mornings and seeing my father looking back. Today my hair is back. The nice full-bodied curls didn't last, but I'm very thankful just to have hair again.

Although I would never have chosen to have these experiences, I am thankful that I did. I know my life is better because of them. I am very aware of how important it is to live in the present and to not sweat the small stuff. My chances for long term survival are not much different from anyone, (you could be killed by a bus tomorrow) but once it's up close and personal you realize that any moment may be your last. It sure makes life sweeter when you know this deep down.

November 2011 - Round 3

Here we go again.

Seven years after I finished treatment for my second breast cancer I have been diagnosed with cancer again. This time it is Non-Hodgkins Lymphoma (NHL). We found it through a routine blood test which showed a higher than normal white blood cell count. The high end of the normal range is 10, mine first caught the doctor's attention at 13. We watched and waited for over six months and it would go up, then stabilize, then go up again. When it got to 19 Dr. Scheeler referred me to Dr. Alvarez, a hematologist/oncologist. He took about a zillion quarts of blood over the next several weeks to try to narrow down the problem.

One interesting side note is that I had to treat myself to a big juicy hamburger after a couple of the larger blood draws. My body craved it and a burger never tasted so good.

There are many things that can cause a high white blood cell count. After he narrowed it down to possible leukemia or lymphoma he recommended a bone marrow biopsy. This scared me to death as I've heard they are very painful, but he allayed my fears by promising that it would be done under anesthesia and I wouldn't feel anything but a little soreness for a few days following the procedure.

He was right, it wasn't a big deal at all and it showed that I have stage 4 (in the bone) Non-Hodgkins Lymphoma. Another blood test determined that it was the lymphoplasmactic type, which is apparently pretty rare. After another round of tests including a PET (Positron Emission Tomography) scan, a CAT (Computerized Axial Tomography) scan and a MUGA (Multi Gated Acquisition) scan it appears I'm actually very healthy except for the NHL cancer.

Port of Entry, Again

I had a port inserted last week. This is a device with one or more hollow chambers inserted under the skin on my chest with a tube that goes directly into a large vein. You can learn more about a port at this web page. [www.portadvantage.com/patient/about_implanted_ports.html] I have the double lumen (two chamber) port and the catheter goes up into my neck and then down into the vein. When it comes time for a treatment, a small needle is inserted into the port so the medication can be introduced through an infusion drip.

The good thing about having a port is that I don't need to have a needle inserted into my arm for several hours at a time. The bad news is that I can feel the device through my skin which makes everyday things like wearing a seatbelt or sleeping a little uncomfortable. This one seems to be better than the one I had seven years ago when I had chemotherapy.

I begin treatment the week before Thanksgiving with a plan for 16 weekly rounds of Rituxan™. This is a biologic drug that attacks only the bad cells so it apparently is much easier to tolerate than traditional chemo. After the 16 rounds are completed I'll be on a maintenance routine for a year. I'm not yet sure what that involves or how it will effect my lifestyle and ability to travel. The good news is that I won't lose my hair this time! YEA!

Here is a blog of my treatment this time around. I'll update this for my friends so I don't need to spend as much time answering email or phone questions.

November 20, 2011

I had my first Rituxan treatment on November 16 and it went smoothly with few side effects. I sat in a recliner in the doctor's office for four and a half hours while a combination of Benadryl, Rituxan, an anti-nausea drug and a steroid drug dripped slowly into my body through my port. Within the first few minutes I felt an itching in the top of my hands and my thighs, but thankfully it stopped a minute or two later. A bad headache and extreme drowsiness (probably caused by the Benadryl) was about as bad as it got. We stopped for lunch on the way home mostly so we didn't need to cook then I went to bed and slept for over two hours. By Thursday I felt fine again and have felt that way since. I'm a little tired, but that may or may not be related to the treatments.

December 5, 2011

My mind is not what it used to be. I just discovered my microwave oven now makes cold tea, it only takes a few hours. The treatments are not getting any easier. I slept through an hour of the treatment today then slept another two hours at home. The nurse and my doctor both say that fatigue is not uncommon with any treatment so I should not be concerned about it. It is certainly much less severe than the fatigue I felt during my previous chemotherapy and so far I can manage it by not trying to do too much in any one day and resting when I first start getting tired. And if the doctor is right when he said I'll feel even better when I finish the treatments than I did before I even knew I had NHL it will certainly be worth it.

Only 13 more times in this weekly cycle.

December 12, 2011

I'm 1/4 the way through! Treatments are going well, the only strange side effect is some itching-burning sensation when they push the Decadron (steroid). The nurse never heard of anyone complaining of such an effect, but the next patient complained of a bad burning sensation with the Decadron, so I guess I'm not imagining it. She will try diluting it next week and putting it in as another drip, we will see if that takes care of the problem.

Treatment days put me in that strange place between the steroid boost of hyper energy and waves of cancer treatment fatigue. I feel like I could run circles around the house and at the same time feel like I could sleep for hours and hours, but that's to be expected with this combination of drugs. Certainly this kind of tired is nothing like chemo was and a world away from the radiation treatment side effects. I figured out I'm spending about $15,000 - $20,000 out of my own pocket to have this biologic treatment instead of chemo, but so far the difference in quality of life is worth it. We will probably be cutting back on traveling and spending more time at home or visiting near by places, but again, the price is worth it!

Not having to work right now is a big benefit. I even put up the Christmas tree this year after skipping it for the last two because I couldn't handle the thought of the work it took to put it all away. So every day I spend a little time in front of my tree admiring the lights and my ornaments that I have collected and received as gifts over the years. This is a beautiful time to celebrate life, and I'm making the most of it.

December 21, 2011

My request to have the Decadron (steroid used to help prevent inflammation) put into a drip instead of being pushed straight into my port completely avoided the extremely unpleasant burning/itching feeling, but added an extra 30 minutes to my infusion time.

The good news is that this is a holiday week, the doctor was out which means all of the Medicare patients were also not allowed to show up. It looks like Medicare won't pay if the doctor is out of the office. I'll be in that boat soon enough so it is a good thing to note the restrictions.

The overwhelming fatigue still hits me like an elephant where one minute I feel fine and the next I have completely run out of energy to stand. This is most obvious the day of and the first few days after the treatment. I find that I'm craving comfort food more when I'm fatigued and today I found a box of Trader Joe's Truffle Brownie mix about to expire. Guess what I'm having for dinner tonight, OK maybe I'll be good and make it dessert. The truth of the matter is that I had to sit down several times while making the mix just to keep from injuring myself. I keep telling myself this is better than chemotherapy, and it definitely is, but I'd sure rather be feeling normal again.

Only 12 more weekly treatments before I 'm done with the weekly infusions and start on the maintenance schedule. If I have any money left after paying the medical bills we may be able to take a few short trips, YAY!

December 28, 2011

This was a pretty good treatment day. I was the first one on the schedule, it was a slower than normal day at the doctor's office and everything went a little faster than usual. I also met with the doctor who told me he thinks I'm getting stronger. I won't have the results from the lab work until next week, but they will call if there is anything I need to be aware of. I was done by noon with half of a sunny and unseasonably warm day still ahead of me.

Sleeping the whole night through has been hit or miss lately so my doctor officially approved naps as good for me. I spent a couple of hours this afternoon laying on my living room sofa watching the beautiful Christmas tree lights. From time to time I would also get a lap kitty which helped. I'm not sure if it counted as a nap, but my energy level and mental acuity was somewhat better than last week's treatment.

I have been trying to do some meditation every day as I have always believed it's good for the mind, body and soul, but have never taken the time to do it. That could be another reason I am starting to have more energy. I'm doing 10 minutes of meditation and 10 minutes of yoga almost every day. I'm planning to increase the time as I go. I still have major problems with runaway brain while I'm meditating, but apparently that's very normal.

And some extra good news is that I discovered a miscount in the number of treatments. This was my 6th treatment which means I only have 10 remaining.

January 4, 2012

My infusions are given at the doctor's office in a room with two very large windows and five recliner chairs facing each other. This is a big change from my previous round of cancer where the chemotherapy was given in a large room with half height privacy walls between the chairs. The main difference is the opportunity for people to talk to me during treatment and I honestly would prefer to keep my nose stuck in a book or sleep. I try to be nice, but I really need to take care of myself first.

January 6, 2012

I officially hate all of the confusion surrounding insurance and Medicare.

The brain fog and fatigue that comes from my cancer treatments only makes everything worse. I inadvertently caused a mess for myself by misunderstanding what the words employer coverage meant. If you have coverage under an employer's plan you can keep that until it ends, then go on Medicare with no penalties. Unfortunately I found out the hard way that COBRA (Consolidated Omnibus Budget Reconciliation Act) insurance doesn't count. I had signed up for Medicare dutifully as soon as my registration period started thinking I would keep my COBRA plan until it expired and then I would get a Medigap policy. But I found out my COBRA plan would cancel me when Medicare started and since the drugs under COBRA would cost much less than on the Medicare plan I knew I should cancel my Medicare but wasn't sure how in the world you would do that.

Well, believe it or not the government actually has a form for that, so I dutifully sent in the form thinking this would fix everything. But, a few weeks later I found out that COBRA is not considered employer's coverage and it would expire for me at the end of September. Therefore I would not have any insurance for almost a year since I would not be eligible to sign up for Medicare until December of 2012, and it wouldn't start until July of 2012. Then my Medigap insurance would be subject to underwriting which would almost surely cost more than I could afford. So, Monday morning we are going to Medicare to see if they can re-enroll me. Keep your fingers crossed.

January 09, 2012

We got to the Social Security Office at 8:15 this morning to stand in line. When the doors opened at 9am I was the fourth person to get a number so it went quickly. The very nice civil servant said he thought he knew how to fix it and did a new application with the same date as my original application. He was going to fax it to someone and I should know by early next week if this worked. If this doesn't work he will hopefully have a backup plan. I still have two more months to sign up without a penalty, so I am fairly confident this will all be straightened out. Of course I'm still stressing over it, that's what I do any time there is a financial issue involved. This was a great lesson in paying more attention and doing my research before I make a big decision. I'm usually very good at that, but chemo brain kind of takes over.

January 10, 2012

The treatment today was fine. It wasn't very crowded so I was able to relax and sleep a little. The Decadron hit me hard again so I was on a manic roid rage high all day. Next time I'm going to ask if they can cut back the dosage a little bit so I can sleep. I sleep fine during the infusion because the Benadryl counteracts the Decadron, but by the time that wears off I'm pretty out of it for about two or three days.

January 13, 2012

The insurance mess just got worse!

My pharmacy is refusing to fill the prescription for my next round of Rituxan because their paperwork shows that eight infusions is the maximum for Non-Hodgkins Lymphoma, but my doctor believes that isn't enough so he does sixteen. I had to go in to the office for another Leukemia/Lymphoma panel (blood test) which will hopefully be enough information to tell the pharmacy I need more treatments. On the other hand, maybe it will show I'm free of lymphoma. If I go on Medicare next month it may not be a problem, they could easily have different rules.

I think this is the first time the doctor has had this come up, so it's probably only my picky insurance company. I've decided to skip the other three infusions this month because everything is coming out of my funds. I won't have hit my deductible and out of pocket for another month or two and I'll hopefully be on other insurance by then and starting over. I'm not too worried about postponing a few treatments, especially since eight treatments appears to be the norm for most people. I won't have the results until next week sometime, but I'll let you know the next chapter in this saga.

UPDATE: I just checked my account on the Medicare web page and they are showing my Medicare Part A and Part B effective date of 2/1/2012. Looks like it's fixed, but I'll double check that next week with a phone call to our local office. What a relief! Maybe I can start breathing again!

February 1, 2012

REMISSION! My latest blood test is very good. So now I have some choices to make.

More news to come after the doctors can explain things to me.

February 2, 2012

I decided that I needed a second opinion on how many Rituxan treatments I really need. This came about for two reasons, one is I am wondering why Dr. Alvarez has told me I will have 16 treatments but the pharmacy believes that 8 is the most they will allow. Also, most doctors provide the Rituxan from their own stock and therefore the drug cost is included with the cost of the entire treatment which means Medicare part B covers it at no additional cost to me.

Today I met with Dr. Thomas at Rocky Mountain Cancer Center. They are where my first oncologist, Dr. David Garfield, was associated but they have changed and grown a lot since I last knew them in 1988. They now have about ten offices around the front range. I felt comfortable with Dr. Thomas and her ability to make things understandable to me. Their office is closer to my home, has better parking and a much larger chemotherapy room with space for care givers to sit in the infusion room. Casey would be able to stay with me through any future treatments.

Dr. Thomas said that based on my lab tests she would only have given me 4 treatments of Rituxan. Since I have already had 8 I'm way ahead of the game. My last leukemia/Lymphoma blood test showed no evidence of Lymphoma at the current time. That's very good news. It means the Rituxan did what it was supposed to do.

There are a lot of different opinions on the value of maintenance treatments, and how much and how often to have them. Apparently maintenance treatments can prolong the period of remission before additional treatments are necessary. However, there seems to be no increase in longevity of life if you choose to simply watch and wait and then have treatment again when there is a recurrence of the Non-Hodgkins Lymphoma.

February 7, 2012

I had my 9th treatment today. I was feeling much more like my old self after almost three full weeks without a treatment. This is encouraging for when the remaining treatments are over.

I met with Dr. Alvarez today and found out a couple of interesting tidbits that either I did not hear before or were not covered by the questions I could think up before. The double length course of Rituxan he prescribed was so I could avoid any chemotherapy which is very often combined with Rituxan treatments. I'm very happy about this choice.

Dr. Thomas and Dr. Alvarez are both part of a small group of 8 doctors that fill in for each other when needed which makes me feel a lot more comfortable about the pending move.

The bad news is that Rituxan is a super highly controlled medicine that requires tracking at every step. The drug company where I was buying the medication refuses to allow it to transfer from Dr. Alvarez' office to Dr. Thomas' office so I'm stuck using up the remaining treatments at the old office. It's not that I hate that office, but the new one is so much more convenient and has room for Casey to sit with me during the infusions.

I have another bone marrow biopsy scheduled after the last of these Rituxan treatments. That may make a difference on what route we decide to take. If nothing alarming is found, I think I'll move to maintenance. No decisions will be made until after I meet with Dr. Thomas on April 23. She should be back from maternity leave by then and we can figure out what the next step is.

February 14, 2012

Lately I'm finding it hard to sleep. It is unclear if this is caused by the cancer treatments, my recent medical insurance headaches or just the runaway brain of daily life. Whatever the cause, it sent me to the doctor's office feeling very groggy this morning. I was thinking a quiet nap during the four hour treatment would be nice. An uncomfortably loud cell phone conversation between another infusion patient and their friend ruined that plan. I was very happy to get back to my quiet little home without rude cell phones pestering my rest. Don't people have a clue that no one else wants to listen to their conversations?

I spent the remainder of the afternoon sleeping in the warm sun with a snuggly cat on my lap. My cell phone is set to airplane mode (disables all contact with the outside world) on purpose just to make sure a stray call can't get through.

What a way to spend Valentine's Day.

February 21, 2012

Only one more infusion to go at Dr. Alverez's office!

I sure won't miss the crowded parking garage. But I will miss the nice staff at his office. I'm planning on making a batch of my Key Lime Cookies to thank them for all their kindness.

Most of you know I believe in signs and this is a good one. I borrowed a book from my weaving guild library, and there was a card in the middle that someone had obviously used as a bookmark. Here is what it said:

My mind is poised and clear and I know that Universal Intelligence expresses through me as right decision. I release any sense of anxiety as my inner guidance leads me to right action in all matters.

This book had not been checked out of the library since 2007! Since I've recently made the decision to change doctors and follow whatever procedures she believes are best it was nice to see this affirmation that I make the right decisions. I will also soon be deciding on what future treatments I will have. Based on the bone marrow biopsy that I am having in March I will know whether or not the lymphoma has disappeared from the bone marrow. If it has then I'm officially considered to be in remission. Depending on the outcome of that test I will either be having additional treatments (more Rituxan or something else) or I will enter the maintenance phase of treatment, which will most likely be two months off, then four weekly treatments, repeated back and forth for a year. I will have more information when I meet with Dr. Thomas on April 23. That gives me almost two months with no doctors and no treatments! I'm looking forward to getting my energy back.

Thank you again for all your prayers and kind thoughts and communications. It really helps to know my friends are looking out for me.

February 28, 2012

Twelve treatments done!

The weather was nice and sunny for the drive to the office, it snowed really big flakes during my treatment and then was sunny again when I left. The doctor's office was not busy, which was a very nice surprise. That allowed Casey to sit with me for the whole treatment but even so I ended up sleeping about half the time. I took pictures with my phone of the staff at the doctor's office and made sure they all knew I would miss them. They liked the key lime cookies I made for them as a parting gift. Then it was all over.

I needed to do some shopping on the way home and the store happened to be right around the corner from one of my favorite Mexican restaurants. The food was a nice treat, but in truth I often make better Mexican food at home. At least someone else had to do the dishes.

This officially starts at least two whole months without any cancer drugs before the next stage of my treatment. I'm really looking forward to getting my energy and my brain back. I miss feeling like myself.

The next step is a bone biopsy to find out if I'm really in remission. If I am I will start maintenance treatments with the same drug, although I believe it may be a lighter dose. If the lymphoma still shows up in the biopsy then I'm not sure what the treatment will be. However I am feeing positive and hopeful. I won't know the answer until the end of April, so stay tuned.

March 13, 2012

I just received the good news on a phone call from my doctor's office. My bone marrow biopsy shows no signs of lymphoma cancer! I did not realize how much of a weight this news would lift off my shoulders. For the first time in months I feel like I can relax.

April 20, 2012

I met with my doctor today and found out I am officially in remission. There is no maintenance routine for the indolent (meaning not otherwise classified) type of Non-Hodgkins Lymphoma that I have so insurance won't pay for treatments until I actually get the disease back again. That's good in one way, it means I don't have to decide whether I should do extra drugs now to hopefully keep it from coming back too quickly. I will need regular blood tests every three months to watch my White Blood Cell count. Remission can last from two years to ten years, but I am hoping for twenty! This will probably be my last posting to this blog since as far as I'm concerned this chapter of my cancer journey is at its end. Thank you all for your prayers and good thoughts, I know they made a big difference. Now it's on to finding some temporary jobs and continuing our RV travel adventures.

February 28, 2013

One year ago today I had my final infusion of Rituxan. Since that day my energy level has slowly returned, although I needed a little help from an iron supplement because my iron reserve levels were down to a seriously low level. I don't know if that was related to the treatments or not, but a few iron tablets a day are pretty easy to swallow. I meet with Dr. Thomas every four months for follow-up and so far all my blood tests are great.

The chemo brain fog is getting better. I'm not forgetting words as much as I was, but I still have problems with critical thinking and analysis. It's not debilitating at all and I'm finding that using my creativity seems to help a lot. I'm taking some quilting classes and learning new techniques as well as using my color senses and eye hand coordination on the sewing machine. I do believe my brain is getting better every day, and even if it isn't I'm going to have several quilt tops to make into quilts!

So... Life is Good! And I'm glad to be here to enjoy it.

Lessons Again?

I learned a lot of lessons when I had breast cancer in 1988. When the big C came back in 2004 I felt it was there to remind me of some of those lessons I had been ignoring for a while. This time I don't know why it is here. My life is very fulfilling and happy right now, but obviously there are things I still need to learn.

So I'm looking and learning.

Community

I want to thank everyone for sending prayers and healing thoughts as I went through cancer treatment. I truly believe it helped. I'll keep you updated here and let you know about any new developments.

If you have any questions about my cancer experience or if you have cancer too, I would love to hear from you. Please send a note (use the feedback form below) and I'll do my best to help.