A Crazy Week

This past week was one of those crazy weeks when life is busy and crazy and frantic. The kind of week that can't end soon enough.

Tuesday was a tremendously long day at the hospital. Wonderful Brenda picked me up at 5:30 a.m. for an early test, followed by another test, followed by waiting, followed by waiting, followed by another procedure. We arrived home at 6:30 in the evening. Exhausting!

Thursday morning, I was on the phone with my sister Kaki, on my way to KUMed. I was driving our 'new' car - '02 Passat wagon - and I decided to get off the phone as I was hitting the rush hour traffic and needed to pay attention. And good thing I did.

Right after I got off the phone with her, it felt like something hit the underside of the car and it started smoking. Luckily, there were very few cars around and I got off the highway and onto the shoulder immediately. I got out and looked underneath only to see oil pouring out of the engine and a big chunk of metal (a piece of the engine) sitting underneath the car. I looked back and you could see the path I took leaving the highway by the trail of oil I left.

We have only had this car for nine days and we haven't even registered it!!!! I called Richie immediately. Thankfully he had not made it all the way to Topeka yet and he reached me about 45 minutes later. He got me into KUMed and then turned around to meet the tow truck. Then he came back to pick me up.

We called the guy we bought the car from (without a warranty) and asked if he would be willing to come to terms with us. Neither one of us expected that he would - we knew we were buying a used car with no real history - it's the risk you take. Richie knows his stuff and this seemed like a great car. Much to our surprise he called back and offered to buy it back for 75% of what we paid for it. We decided this was the best route to go. Life is stressful enough and we don't need things to be any more complicated than they already are!

On Thursday we had good news, too. The results of the PTscan from Tuesday were clear. No cancer, nothing lit up, nothing new! I had had a CT scan on the 20th of July that showed a spot in my pelvis on the right side and my oncologist wanted to know what it was. So the tests on Tuesday included a PTscan, another CTscan and a pelvic under anesthsia. The results from the CT and pelvic on Tuesday are not in yet. and I haven't spoken with the oncologist so I do not have other details or test results yet.

Needless to say, we are very excited about these results. I was sure the cancer was back, even though I feel good, I hesitate to get too excited because this cancer has been so aggressive. I met with the Vit C doc today and she seems to think I am doing really well - and I am. But I am fatigued from the chemo and having some increased side effects in the way of skin rashes, but nothing more than that.

I also met with the urologist today and we set up a date for him to fix the vaginal/bladder fistula. The surgery is set for Sept 2. My mom is going to come up and stay for a week or so, or for however long she wants to. I will have to stay in the hospital overnight barring any complications that is. The urologist is confident that I will make it through this without any trouble, but there are always risks.

Richie has a business trip set for that weekend and I really want for him to go. His business trips are sometimes like vacations and this one definitely qualifies. He will be in Utah at the Bonneville salt flats for motorcycle racing. He has been invited to stay at the track, camp out with all the racers and their teams. We have family and friends around to help, but mom and I will probably just sit on the porch all weekend.

So, forgive my rambling, but I have had quite a week. I am exhausted from all the ups and downs. But my spirits rise when I realize that six months ago, I was feeling poorly and not very positive about the future. I am so much stronger now, both physically and mentally.

M and C go back to school next week. M starts at the high school and C in 8th grade. Time has gone too fast, it seems like they just started grade school a few years ago. Such a bittersweet time for parents.

Love to all and many thanks for all the good wishes,

Maggie

Time for an Update

Today I am in KC for Vitamin C and chemo. This morning, as I sit in the ‘lounge chair’ with my ‘good medicine’ dripping in, I am anxious about the ‘other medicine’ this afternoon. This will be my sixth doxil treatment.

We met with Dr. Chapman on Monday. My CA125 rose again from 110 to 134. This is a much smaller increase than the last time, but an increase nonetheless and this causes great anxiety for me. I also had a CTscan on Monday, July 20th that had mixed results. The scan showed my chest and abdomen are clear which is great because it shows the cancer has not metastasized but there is a small (2cm) spot in my pelvis. This could be new cancer growth, an inflamed lymph node or scar tissue from my surgeries. The plan is to continue with the doxil and monitor the spot in the pelvis. I will have a PT scan sometime in the next few weeks (I hope!), which should give us more information.

I have also been dealing with another fistula, this time involving my bladder. I am working now with the docs to schedule an outpatient procedure to have this repaired. It can’t happen soon enough for me!

Generally, I feel really good. I am in pretty good spirits and my physical strength and stamina get better every day. I was so busy yesterday – and it felt so good – that it reminded me of the ‘good old days’. Mornings are my best time. I wake up early with Rich and then get as much done as I can until my energy starts to dip.

The side effects of the chemo are getting a bit worse. Doxil likes warm and moist areas of the body in addition to causing problems with the hands and feet. I am having problems with my feet particularly when it is hot. I do feel like this mild summer has been a gift. If the weather was more normal this summer, I would likely be more miserable. Right now, when the temperature and humidity rises, I feel tingling and tightness in my legs and feet. The rash gets worse the hotter it is and I tend to have swelling in the lower legs and feet at the end of the day. The rash is not itchy, just persistent and takes days to resolve. I feel a little nauseous during the second week after chemo infusion. Not so bad, I guess. Things could always be worse.

We are having a good summer. We are renovating the bathroom on the main floor. This has been a good thing for me physically because I have use the basement bathroom and the stairs have helped me build up my muscles! This project should be done by the end of August and it will be exciting to have a new bathroom! I am not a good decorator but I know what I like. I like things to be simple and there is nothing simple about renovation.

M and C have had a busy summer. They are always off with friends and gone from the house. They went to the Adirondacks for a week in mid July and came home different people. They spent the week with a large group of cousins, swam, kayaked, hiked and generally relaxed, all without the parents. It was heavenly. Rich and I missed them terribly, but managed to survive!

I head to St. Louis for the weekend to spend some time with my family and see an old friend, someone who was very helpful to us in NY two years ago. Then we are off to the Twin Cities for a quick visit before school starts. For us, it is almost an end to the summer and I can’t believe it has gone so quickly. I can look back and see what incredible progress I have made in getting stronger since January. I still have a ways to go. I can’t wait to be cancer free, in remission and working on rebuilding my life. I want to get back to school and working again. I am a more patient person now than I was a year ago, but I still can’t wait for some ‘normalcy’ again.

My heartfelt thanks to everyone for the help we’ve received. We are so thankful for the good wishes, the help, the positive energy and the prayers. And as always we send ours to you.

Maggie

Two Years

Tomorrow is the second anniversary of my diagnosis. Two Years!!! Sometimes I just cannot believe this is my life.

We had a pretty crazy June, but the weather has been very nice and I have been spending a lot of time sitting on the porch. I really like the porch. I have been working hard on trying to get the insurance company to support my Vitamin C therapy. Lots of paperwork, phone calls, negotiating, begging, crying - and the porch has become my office area. Depending on where I sit I can watch the neighborhood (true Alice Kravits style) or I can hide and avoid detection - just depends on my mood.

Two weeks ago I came down with another infection and after a visit with the doctor last Thursday to remove my stents, I have been feeling really, really good. The low grade infection that kept recurring was really dragging me down. And then this past Monday, I had a visit with the oncologist and then my fifth chemo treatment of doxil. My CA125 is up to 110, doubled since last month.

I hate the CA125. I hate the anticipation of the test, the anxiety, the fear, but it is the standard used by the oncologist to determine if there is possible cancer activity going on in my abdomen. BUT...the CA125 can also be influenced by irritation in the abdomen unrelated to the cancer, like infection. So, my hope is that the increased number is indicative of the urinary tract infection and not new cancer growth. It is either one or the other. So, in two weeks time, we will repeat the CA125 and then I will have a CTscan. The roller coaster is warming up and will be leaving the station soon.

So, the Fourth of July holiday is not a very exciting time for me. It certainly is a memorable time, but I think I will spend the day following my family's lead. The kids will surely want to set off something explosive and I know the dogs will be a little skittish and I feel a little Alice Kravits time coming on.....

Relay for Life and life.....

The Relay for Life evening was absolutely wonderful. Our “Tutu Bad for Cancer” team drew lots of attention, we looked BAD!!! One member of the group talked his way into bringing his little ‘canned ham’ trailer on site for us to use on our campsite. As it was the only trailer on site, it was easy to spot our meeting place!

I had a wonderful time walking around the track with my friends. It was a beautiful evening. We had a large group, adults and children, walk for the team lap and I felt so happy, so blessed, so lucky to be a friend to these wonderful people.

Stacey stayed out all night long with Molly and Anna Grace, Madeline and Lily walked for four hours in the dark of the night and there were tutus on the track all evening and into the early morning hours.

Thanks again to all of you who participated by walking or by donating. It was a success by my standards and although it was exhausting (for me at least), it was one of the best evenings I have had in a long, long time.

Early Saturday morning, Richie and I arrived at about 5am to pick up Madeline and Lily. Stacey sipped her latte, Molly and Anna Grace were still smiling. We returned to the house and loaded up the car for our trip to St. Louis for the Collins family reunion. We met in the northern Ozarks at my uncle’s summer place. It was a beautiful day with my mom, brothers, sisters, uncles and cousins. We spent the night in St. Louis and I woke up feeling more rested than I have in a long, long time.

Tuesday evening we made it to the first volleyball night at Jane and Steve’s. More good friends and a chance to meet the two new members of the volleyball crew. Whew! I continued to feel good – until yesterday! I am back on antibiotics for another UTI. I had a pep talk this morning with Mom, where I cried, she comforted me, we both cried and then we both got off the phone before it got out of control. I do feel better today, but zapped. The combo of chemo fatigue and infection fatigue are holding me down. There’s always tomorrow, right?

This past weekend was a big step for me. I haven’t had the energy to be out much. I am glad my friends and family see that I am doing okay. Physically I am getting stronger and emotionally I am holding my own. I am a little too skinny, but working on gaining weight. But most importantly I feel stronger and I feel better. I am working on building my stamina. I just add a few more minutes of chores or movement everyday. This can only make me stronger and more confident in my ability to keep moving forward.

Thanks to everyone for Relay for Life, for support, for your energy, for being my friend. I am a lucky woman and things will only get better.

Love and hugs,
Maggie

Tutu Bad for Cancer

My dear friends and family,

My apologies to anyone who has already received an email about this. I am sure I don't have the email addresses for everyone who checks in on this blog, so here goes.....

I am here again to ask for a hand up and a hand out. My wonderful friend, Stacy Louise has organized a Team Backus for the 2009 American Cancer Society’s Relay for Life. It will be held here in Lawrence on June 12 starting at 7pm and ending June 13 at 7am.

The teams are usually comprised of 20-24 people who agree to raise $100 each for the American Cancer Society’s research to cure cancer. And then they have to have a team member on the walking course (here in Lawrence at SWJHS’s track) for that twelve hour period of time.

I have always received great support financially and more importantly emotionally from so many people in my community here in Lawrence, in St. Louis and beyond. I hope you can find it in your hearts to help again by sending in a small donation. Imagine if only 20 of you sent $5.00 how easily $100 could add up.

Our team quickly morphed from Team Backus to ‘Tutu Bad for Cancer.’ Because we are a bunch of 'last minute lucys' we are still assembling our tutus and I can’t share a picture with you (until after the event) you will have to use your imagination to see the 20 odd grown men and women (and some teenagers!) who have agreed to wear a tutu while walking around a track for an hour because number one, they can and number two, I think they love me a lot! I love them a lot too and am still humbled by their love and steadfastness.

My story is as familiar as any other cancer patient and so I will only say that I know that one of the reasons I am still alive today is because of the brave women who came before me and tried one or another of the cancer drugs researchers found to fight ovarian cancer. Much of this research is done with the support of the American Cancer Society. Ovarian cancer has not yet the cache of breast cancer (or the great marketing and branding) and we patients rely on people like you to help in ways like this to find a cure.

Please send your checks, money orders, (made out to Relay for Life) anything you can to me, earmarked for the Relay for Life event and I will pass it all on to the American Cancer Society. (email me separately for address!) It’s a good thing to do, it’ll make you feel better, and it will put a smile on my face. Those smiles are medically proven to help me survive. (I don’t know if that is true, but it sounds good and I am going to make it work for me.)

Thanks for taking the time to read this, you might help save someone’s life or at least give them hope for one more day and in the end that’s all we really can count on, isn’t it?

By the way, I’m doing well, still recovering and getting stronger. I’ve had minor setbacks, but nothing to really hold me back. My current treatment plan is the best so far and I am responding well. I have great hope for our future.

Many hugs and much love,
Maggie

My positive mantra

You cannot receive your chemo treatments if your ANC (Absolute Neutrofil Count) is below 1.5. Yesterday my count was 1.3. My white blood count is just a smidge too low. So no doxil this week, maybe next. I am feeling a little down about this but am trying to use the number 51 as my positive mantra.

It also helps to stay positive when good things happen for your children. Madeline was awarded the Mustang Female Citizenship Award last night at the 9th Grade Recognition Ceremony. She was recognized by her peers as someone who "respects the individuality of their fellow students, looks for the 'good' in people, strives to achieve in school and extracurricular activities, speaks positively of others and cooperates with peers and teachers." Can you tell how proud I am? It says a lot to me about her mental health. We have had a rough couple of years here and yet she has remained true to herself and is doing pretty damn well. I sure love her.

Happy Memorial Day weekend. May all your memories be good ones.....
Maggie

CA125 news

I had my monthly CA125 test on Monday and the results are stunning - to me. My CA125 is down to 51. I can't remember when it was this low before. I am, of course, riding high. Who wouldn't be? But I am also feeling a bit cautious. I will probably always feel this way. But I really like the sound of fifty-one. And I am going to ride that wave for the next four weeks - until the next test.
Keep that positive energy and the prayers flowing my way. It's working....
Maggie