Reporting from the real Jane

The Way I See It #259

"People say, oh I could never do that! But when you meet cancer patients you understand the bravery and spirit those people show each and every day. Their struggles and spirit motivate you to test the limits of your endurance to cross that finish line. You'll be surprised at what you can do."

-John Kellenyi, eight-time marathoner and leading fund raiser with The Leukemia & Lymphoma Society's Team In Training.

Interestingly, this was on a Starbuck's cup filled with a latte (the last one I drank several weeks ago). My sister-in-law had not read the cup when she got the coffees.

I always maintained that I would never do chemotherapy if I got cancer again (I had lymphoma in 1975). And here I am, 15 months of chemotherapy later, wiped out and barely able to eat. It is amazing what we will do to survive. I don't think we're instantly brave or strong. It's the determination to go on, to feel we're "finished" with our task on earth that brings those strengths out of us. Not everyone is called upon to use them, but I believe everyone possesses them. No one can say "I'll never do that" or even "you should do this or that" because you just don't know until you're walking through these tremendously hard decisions yourself. And nobody knows but yourself when it's time to relinquish the fight, not out of cowardice, but perhaps from some eventual inner knowing that, in the grander scheme, it's time to cross that finish line that God has set before you.

These last several weeks have been the hardest yet. I've layed in bed thinking that I cannot do this much longer. What good is treatment if it's making you so miserable that you can't do any more than wander from the couch to the bed. And especially when treatment isn't making a difference. All this time, the treatments have only served to stave off the inevitable. And that is the real issue. They never told me this would be cured. When the cancer broke through to my lung area, I definately turned a corner, physically and emotionally.

We're not sure yet as to if these last few treatments have made a difference. I was supposed to get 16, I didn't even make it through 4 complete ones. I will have a PET scan this Friday and we'll see. For now, we are taking a "chemo holiday," and at this point, I'm not sure if I want another drop of the stuff. The doctor talked about going back on the same treatment I had last year, as we are running out of options. I think I pretty much gave him a blank stare.

At this point, I honestly can't say that I'll do more chemo, unless they come up with some miracle drug. I'm so burnt out from it. And oddly, I feel a sense of freedom. If I can have a few good months with my family, share another summer, savor the beauty of God's creation here on this earth, smell the sea, feel the coolness of the mountains, sit in a boat on a lake, even just watch the birds come and go from our bird feeder... this will be time well spent.

Pray with me, dear friends, for wisdom and peace, for the rest of my days to be as pain free as possible. Pray for my dear family, for comfort, for security, for peace that passes understanding.

I will let you know scan results probably next Monday.

Jane


PS: I am not checking any video attachments or web stuff that is sent to my computer. My computer is slow and these things take a long time to open. If you need to send this type of mail, please send to Doug's computer via his blogsite. Thanks! Love you all!!

Nice Week with My Sisters

(Doug Posting for Jane)

My sisters, Terry and Sue, came from California to visit me this week. They arrived last Saturday, and left just about 20 minutes ago. They were so helpful, keeping me up and walking, feeding me, having intimate sister conversations. It was wonderful, and tough to let them go.

My spirits were high all week long, and I have been up more in the past week than in the past month and a half.

I had a chemo treatment yesterday, only the Erbitux, and so it went pretty fast. The oncology nurses at Ambulatory Infusion gave us some wonderful gifts this week. First of all, the secretary at the center brought over two coolers with casseroles in them for the family, which came in especially handy feeding the 7 of us (my two sisters and us). Yesterday, during my treatment, I was given a card with a variety of gift cards, such as Pizza Hut (great for the kids), Fred Meyer, Safeway, etc. etc. These kind of practical gifts are wonderful!

So many of you have, and continue to support us physically, financially, spiritually, and emotionally. We cannot begin to thank all of you enough for all the love you have extended to us. And we want each of you to know that we LOVE you! Not only for what you DO, but mostly for WHO (WHOSE) you are! If it were not for Jesus being in your lives, all this could not have been possible.

I continue to struggle with pain in my abdomen, and difficulty eating (mostly because it causes my stomach to hurt). We are trying to get the pain to a manageable level, by taking hot towel treatments (that Doug applies) Epsom salt baths, etc. I am still tired most of the time, and my stomach is turning and churning a lot of the time as well.

That's about all for now. I am scheduled to have two or three more treatments, and then a PET scan to see how my body has responded. Please pray for continued endurance, and positive results from the PET scan.

With love to all . . .

Jane and Doug

March 29

Hi Friends: Doug here again for Jane.

I can't believe it's been exactly one month since the last post on Jane's blog. It seems (to me) as if time is dragging, excruciatingly slow. That is probably a good thing, since time is all we have. And Jane and I have been spending a lot of time together.

The new treatments with Erbitux have been a challenge for Jane, to say the least. She has been in more pain lately; most of it in the abdomen, which can be a side-effect of the treatment. Jane had a blood transfusion about 10 days ago, due to low H&H (hemoglobin and hematocrit). Our hope was that the transfusion would increase her energy level, however it does not seem to have worked that way.

Jane is also having difficulty eating. Well, not so much the eating part, but simply finding something that will agree with her. She cannot tolerate anything spicy, or peppery at all. Even things that most of us would disregard as being spicy, are hard for her to eat. Consequently, her weight continues to decline, although slowly.

Together we're holding up ok. I have been having my moments, and would ask for your prayers to help me continue to be strong through all of this. It tears me up to see her like this, and I want her to feel better, for her sake.

Jane says that her one wish right now is to have one more season (this summer) to ride her motorcycle. May God grant that request.

Thank you all again for all you do . . . doug

February 29

Hi Friends,

Doug here, posting on behalf of Jane. She has not been feeling well lately, and many of you have been asking about her, so I'll try to fill you in on what's been happening for the past 8 days.

In her last post, Jane told about having a needle biopsy (ultrasound guided thoracentesis for you medical-types). I was at work on Saturday last, and the oncologist called Jane at home with the results. She was told that the sample drawn contained cancer cells, and that he wanted to talk with us on Monday (last). I took off work early, and we went to see Dr. Neville at 4:40pm on Monday. He recommended a new drug to approach the cancer, had the lab draw blood cultures, and scheduled a CT scan for next Wednesday.

Jane and I got home about 6:00pm, and by 9:00pm she had spiked a fever of 103°F. Then it was off to the Emergency Room, where they took blood cultures, chest X-ray and a CT scan. Needless to say, Jane was pretty worn-out by then. I brought her home at 3:00am after the results of the blood tests and CT were looked at. It turns out that her blood work showed no infection, and the CT showed a thickened omentum. We're not sure what that means right now. Anyway, after some Tylenol her temperature was down and the ER doc sent us home.

Yesterday (Thursday) Jane started on the new regimen of chemotherapy, which had to be done at the hospital, to observe her for any reactions to the new drug (Erbitux). The treatment went well, albeit slow, and Jane came home at 8:45pm on Thursday night. Today, she was feeling well enough to go out with a friend to the dollar store to get a few things for Amy's birthday which is today.

We celebrated Amy's birthday with her friends, pizza, and cake, and then Amy and her friends went to the MU on campus to bowl and play games.

Jane is resting right now, not feeling to good. She gets worn out very easily, so we're going to try and take things even more slowly now. This new chemo treatment is scheduled to continue for the next 16 weeks (yes, that's right, 16 WEEKS). If you are praying for Jane, please pray that she will be able to tolerate these treatments for as long as necessary. She has generally been in good spirits, but can always use people lifting her up in prayer.

Thank you to everyone who are helping us out in our time of need. Jane and I are overwhelmed with the response of our family, friends, and neighbors. God bless you, everyone!

doug

February 21

I come to the office each morning and stay for long hours doing what has to be done to the best of my ability. And when you've done the best you can you can't do any better.
- Harry S. Truman



Well, I don't go "to the office" anymore, but each day poses it's own challenges. All any of us can do is the best we can to the best of our ability, no matter what challenges we face.

We found a great home for our puppy Hazel. She gets to run, romp, and play on 9 acres with a "big brother" male boxer. I think she will be very happy there. We miss her, but I believe this has been the right decision. It's great to know she's gone to a good home. Still working on the cat issue...

I had to skip treatment again this week, as pneumonia isn't cleared up yet. In fact, there's a spot of fluid on my upper right lung that they want to biopsy. So, today at 1:00 I am going in for a needle biopsy. Not really looking too forward to it. I just hope the numbing beforehand works really good!! I don't like being awake for these procedures. It's kind of freaky.

Anyhow, we actually went out for a short cycle ride last Saturday. Should I have gone? That's debatable. But it felt great to be out and riding again, though still a bit cold. I was exhausted but happy when we got home. So I think it was worth it! Carpe Diem!!

I'll let you know how biopsy goes today. More later,

Jane

February 15

Wow, finally getting back to my blog. The last few weeks have not been so great. After last treatment (Jan 30), I was really wiped out, sleeping a ton. My back started hurting about 6 days into treatment cycle. At first it felt like muscle pain then it moved into my right lung and it really hurt to breathe. Long story short, I ended up the pneumonia. We were actually very relieved to know that's all it was! Thankfully, I didn't have to get hospitalized, and was sent home with antibiotics. I am healing, getting some energy back, though still have some discomfort in breathing and lung area. But it's so much better than it was!

I had to skip treatment (13th) because of this (which was ok by me). We'll see if I'm well enough next week to have another go at it. Red blood count is low (I'll get a shot to boost this next week), otherwise all other blood work is still good. CEA level is down to 6.8, which is also very good that it's coming down more. There's nothing worse than to go through all this and feel that it's not doing any good. So these blood tests are encouraging.

The doc in Seattle went on vacation until this week and is supposed to be reviewing my scan and getting back to me. His assistant corresponded with me last week to say he's very busy but will get back to me as soon as he can.

So in the meantime I'll continue with chemo. Doc Neville wants me to do 3 more treatments of this regime. We may or may not scan again after that, just have to wait and see how I'm feeling.

Prayers would be to hear from the surgeon soon and wisdom in going forward with surgery. Also for Doug's peace of mind and finding a different position at the hospital. CNA work is very hard, especially with 12 hour shifts. Also for the kids, that they will make right coping choices during these times of stress. Daniel got a job at Dairy Queen, but he needs more hours. Amy is doing well in school and just joined LaCrosse so this should keep her busy.

We also need to make some decisions on our pets. I just can't care for them and I've had to spend some money on one of my cats who is sick. I'm torn between finding out what's wrong with her and spending the money. We won't do any interventive stuff for her but just want to keep her comfortable or, if she has something terminal, to put her down. So I need wisdom here. Also, if you know anyone who would love to own an 8 month old female Boxer pup, let us know. She's really a wonderful dog but too much for our household right now.

Friends and family still prove to be an incredible support. We honestly could not make it through this without you all. We have been remiss to send thank you's and such, but please know how much we greatly appreciate all your kindnesses and sacrifices to us. It just goes beyond
words.

Hope you have a wonderful weekend (maybe more sun!!?)

Jane

January 24

The scan showed overall improvement, which is good. My CEA level has come down to 11 (from 17) which is also good. I missed treatment this week because of the cold, but will go in next Wednesday (30th) for treatment #6 of this round. In the meantime, I'm on a 7-day course of antibiotics. We're going to stay on the current regime, which is also good, as I didn't want to go back on the oxylyplatin. Kind of nice to have a break, but also still want to get treatment. It's a paradox!

My oncologist and surgeon have contacted the doc up in Seattle, so we're waiting to hear back from him. My sense is that he may want to see more remission before doing the surgery, so we'll hopefully hear back from him in the next few days.

Just waiting, listening, hoping, surviving, surrendering, enjoying each day.

More later,
Jane