Chemotherapy Graduation

     While not too much exciting happened during the last two weeks (except for attending a beautiful wedding last weekend), the past few days have been very eventful. Of course the ice storm hit on Sunday, cancelling church and bringing down a large limb from our tree in the front yard. It hit Alison's and Joel's cars but didn't do any significant damage. But our power went out about 6:30 in the morning and didn't come back on until almost midnight. We spent a bit of time over at David and Rachel's keeping warm, cooking food, and looking after Lindsay so they could have a date time.
     And Monday of course was Beth's final chemotherapy treatment. David accompanied her for this one and I dropped in at lunch time.

Everything went very smoothly (there have been some previous issues sometimes getting her port-a-cath to work properly, but it wasn't a problem yesterday). At the appointment on Friday her chemo doctor was very pleased with her liver enzyme levels (they were normal) and her hemoglobin (iron level) had also come up significantly. However the calcium level was creeping up again to what they call a 'critical level' so she ordered another infusion (Beth has had one before) to bring it down somewhat. So this was an add-on to Monday's treatment. It's a 3 hour infusion so they allowed her to go home with it (around 1:00) and then she went back around 4:00 to get it disconnected.
    And then the blessings started pouring down. We first came home to a gift bag from a friend between our front doors. Then at around 5:00 one of the doctors that Beth works with at St. Mary's dropped by to deliver a card, flowers, and gift from the hospitalists (8 doctors who work with patients that have been admitted) there. It included a very generous set of gift cards for local restaurants and Chapters - let's just say we've got eating out covered for a while now!
   About 7:30 three of Beth's co-workers arrived at our house carrying in baskets and bags of gifts that had been collected at the hospital. Apparently her floor had sent a message around the hospital letting people know that they wanted to bring some Christmas gifts to Beth and wondered if others would like to contribute. Well, it was pretty overwhelming to see the number of gifts that were given, and it took a long time to go through them all. There were so many thoughtful gifts and wonderful cards with words of support and encouragement - we were just soaking in the love and care of her friends at the hospital. The original plan, apparently, had been for a whole choir of co-workers to file down from the hospital on Sunday night to sing carols to Beth at our house. Unfortunately the ice storm prevented them from doing that. But they had put together a beautiful compilation of pictures taken around the hospital with so many of her coworkers holding creative and touching signs. So we popped this DVD into the computer and just sat there with tears streaming down our faces as all of these wonderful people encouraged Beth on this journey - it was truly beautiful and touching (if the video doesn't work try this link: St. Mary's Encouraging Beth. Also if you click the box corners in the bottom right corner you can see a larger version of the video)
     We're looking forward to having family and friends over tonight to celebrate on Christmas Eve and then we'll spend tomorrow at my parents. Beth says she still wants to go up to the hospital to sing carols on Christmas morning (a Kreutzkamp tradition for many years now). We've received many words of appreciation for this blog keeping folks updated - but I'd say from our end it's been such a blessing to have so many people taking an interest in what's been happening. It's hard to express how much your support and prayers have meant over the past few months. Thank you for your love and care, and we wish a Merry Christmas to each one who reads this!

More Good News

     Beth had two really good appointments last week that brought more peace regarding a couple of issues. On Thursday we met with the surgeon who will be performing the mastectomy in January. He explained things very well and agreed that in Beth's situation a double mastectomy would be appropriate. He will also need to remove some of the lymph nodes under her arm on the right side which makes the recovery on that side a bit more complicated. That is, she will need to have some physiotherapy for that as it will take some time to regain normal mobility. It was interesting to hear him say that he felt Beth will find the surgery to be easier to handle than the chemotherapy (not sure yet if we'd agree with that but we'll wait and see). Beth's chemo doctor had mentioned at her last appointment that the ideal time to wait between her last chemotherapy treatment and the surgery would be about 3 weeks. Since her surgery was scheduled for January 31st (about 5 weeks post chemo) I was a bit concerned and asked the surgeon about moving the date up. He said that shouldn't be a problem and when his secretary checked into it Beth got a new date for surgery - it will now be on Monday, January 20th.
     On Friday we went to Toronto Western Hospital to see a liver specialist who deals with Primary Biliary Cirrhosis. The first thing she said was that cirrhosis is actually a misnomer and that this condition really doesn't fit that designation. She also said that when people respond to the drug treatment (which Beth apparently has, as her levels were much improved with her last blood work) then their life expectancy is no different from the rest of the population. As well, the doctor said that there have been some cases where they have actually found there can be some healing in the liver with this drug. So this was really great to hear, especially because Beth had been quite worried about the long term consequences of this disease. It was also interesting to hear that the doctor who spearheaded the Canadian study of this drug just retired in June and so the (quite young) doctor we met, has worked with one of the best experts in this area.
     As far as her latest chemo treatment has gone the most annoying side effect has been her mouth being affected. She continues to use the special mouthwash they provide but it still is hard for her to enjoy food. That timing was unfortunate too, as we had her family Christmas gathering this past Sunday at her niece's in Cambridge. Still it was a wonderful time of visiting with extended family.
     On Saturday we visited the ChristKindl market at Kitchener City Hall and then met with our friend Daryl who had taken some family photos for us back in September before Beth lost her hair. There were some good shots and we thought we'd share one here:

Good Reports

     We travelled down to Toronto last Tuesday to see the surgeon about Beth's parathyroid glands. Here's a bit of technical stuff (skip it if you don't need to know and the picture just freaks you out). Most of us have 4 parathyroids, but Beth only has 2 - the two on her right side were lost during her surgery for thyroid cancer in 2002. This surgeon we saw at Princess Margaret Hospital was the one who took out the rest of her thyroid (on the left side) in 2003 and he was able to preserve those parathyroids. However, as has been shared in a previous post, there is now a benign tumour on one of them, which has been causing her calcium levels to rise significantly. The hopeful news from our visit with the surgeon was that he felt he would be able to just remove the one affected gland and leave the other one intact. If the one remaining parathyroid would be able to do the job of regulating Beth's calcium level that would be wonderful, as having to take synthetic calcium supplements can cause some other challenges long term.

     On Wednesday we had supper at our place with some friends from way back when we were in youth group together (sometime in the previous century). We had a lovely time visiting and then rushed off to hear the author Malcolm Gladwell speak. His latest book is called "David & Goliath" and it's all about the power of underdogs. He didn't talk about it that night but there's an interesting profile in the book about a doctor who revolutionized cancer treatment back in the 60's. He was the first one to use a drug called Vancomycin and he also was the doctor who began using a mixture of different drugs to treat various cancers. Both of these revolutionary ideas are significant to us because Beth has, of course, received the "cocktail" treatment for her cancers, and in fact when she received chemo for Hodgkins disease back in 1983, one of the drugs in that mix was vancomycin. Our son David bought a copy of the book for Beth and got it signed by Gladwell, to encourage her in the battle against the giant she's facing. Interestingly, Beth has not been able to read much while she's been off, and she had thought that she'd be able to get some extra jobs done around the house. But it seems that just dealing with this disease is pretty much a full time job - she recently tallied some of the things that have taken up her time: 21 doctor appointments, 19 tests, 5 chemo treatments, a variety of workshops & info sessions.
     Beth had blood work done on Friday, as well as meeting with her chemo oncologist. All of the levels that have been a concern had improved - her calcium level had come down, the indicators for her liver were all much better, and her iron level was the best it's been since this all started. It seems that some combination of drugs (she had the infusion for the calcium level last week, and has begun taking 2 tablets daily for her liver) and prayer are certainly working! As well, the doctor said the breast tumour has continued to shrink in size significantly.
     Today (Mon. Dec. 2) was Beth's 5th chemotherapy treatment and it went amazingly well. The port-a-cath worked right away (without needing to be flushed) and they could administer the drugs more quickly since there have been no reactions during the previous infusions. Josh went along with her this time and they were home by shortly after 1:00. Then Beth had a pretty good sleep by the fireplace in our family room and after supper she even wanted to put up our Christmas tree!

Feeling Blessed

     Well, we think this was one of the best weeks Beth has had since beginning her chemotherapy treatment! We're so thankful for everyone's positive thoughts and prayers.
     Last Monday Beth had the infusion to bring her calcium level down and while it was a longer day than expected, she felt next to no side effects from that treatment. It
ended up taking them almost 3 hours to get the port-a-cath access to function correctly, as it seems to get clogged up by a substance in her blood (called fibrin) and so needs to be flushed with a drug, which they needed to do twice before it was working properly. Beth was surprised when she called the hospital later in the week to see if they would do a check of her calcium level - the nurse told her that they find the infusion works well and the retest isn't necessary. At any rate Beth will get new readings with her blood work this coming Friday as part of her prep for the chemo treatment next Monday (the fifth one, or as we like to say, the second last one).
     The only other concerning time this past week was waking up for the third night in a row on Tuesday with pretty severe night sweats. Beth was somewhat worried about these, and it is one of the symptoms that is listed on the side effects to watch for and call the hospital about. So she did talk to the nurse about this as well but, it was felt that these weren't related to the chemo since she didn't have an elevated temperature along with them. They likely are being caused by the onset of menopause that Beth seems to be experiencing as a result of the chemotherapy.
     On Friday there was an appointment to have a marker inserted in the tumour in her right breast. This is done with local anesthetic and is placed in the centre of the tumour to help the surgeon. Beth really appreciated the wealth of information provided by the radiologist. This doctor helped to explain the kind of tumour and cancer in more detail - we had been told that the tumour was 'diffuse' and we wondered if that was a more negative thing as it sounded like the cancer in the breast was more spread out, but this doctor said it's just a description of the tumour and doesn't affect the cure rate in any way. The radiologist also showed Beth the mammogram they did that day and pointed out to her that there has been a significant reduction in the number of cancerous ducts in her breast compared to her previous mammogram in August.
     The rest of the week was filled with lots of visits and warm wishes from a variety of friends and relatives. Every day it seems there is either a card in the mail, or a message online, or a phone call, or someone dropping by, and these are a real tangible support and encouragement as we go through this time.
     On Thursday Beth drove to Mitchell's Bay (on the other side of Chatham) and had a great day with her sister Elaine, and her husband Bob, making Christmas gumdrop cake, which is an old family recipe her mom used in the past. On Friday she received a nice package in the mail from Calgary that included a beautiful pink hat and scarf that were made by her great-nieces there.
     Laying in bed Saturday morning and reflecting on the week, Beth said she was just feeling so very blessed by all of the support and concern that so many people have shown to her. And of course if you're reading this blog then you are one of those people and we want to say thank you for journeying with us. We so appreciate your love and care.

3 Issues in 1

     So Beth had her fourth chemotherapy treatment this past Tuesday (Nov. 12) and before they give her the drugs she always needs to have blood work. Some of her levels that have been high, particularly her calcium level and liver enzyme levels were even higher. So they ended up giving her 25% less of one of the drugs to see if it would have any effect on the liver enzymes.
     On Thursday she had an appointment with the GI doctor about her liver and it was over the recess time at school so I was able to come along. From the results of the blood work he is quite sure that she has Primary Biliary Cirrhosis of her liver. He said that this is a fairly rare condition (he has seen 4 cases in 10 years) and that the progression of this chronic disease is quite variable. That is, some people can go for many years with very little effects from it, but on the other hand if it progresses more aggressively it could eventually require a liver transplant. So obviously this wasn't the news we were hoping to hear, but at the same time we are very relieved that no cancer has spread to the liver. The doctor prescribed a drug that he says has been found to be quite effective in treatment of this condition and that once she starts on it her enzyme levels should come down. As well, he is referring her to a liver specialist in Toronto who deals specifically with this condition.
     Thursday afternoon Beth also received a call from her chemo doctor at Grand River Cancer Centre, as she is quite concerned about the high calcium levels that are showing up. Even though Beth has none of the symptoms that can be associated with this, the levels have gotten so high that the doctor feels Beth could be at risk for renal or neurological problems. So she has booked an intravenous infusion of a drug that will bring her calcium level down. In fact that will be done tomorrow, on Monday morning and it sounds like it will take about 3 hours, as they need to give the drug slowly. We pray that it will be effective and that she will not need many of these treatments. As well, there can be some side effects of this infusion (although rare), especially with people who have had radiation in their jaw area, which Beth has had in the past.
     So for those keeping score, this is 2 other complications that need to be treated on top of the breast cancer Beth is dealing with. I think it's been mentioned before that the calcium problem will be eventually dealt with by surgery to remove her parathyroid gland(s). It's been a bit tougher week as a result, but it has been helpful to at least know exactly the things we're dealing with, instead of wondering and worrying. On the positive side, several people have told Beth that they have been specifically praying for her to have less side effects from this last chemo treatment and it would appear that so far things have been better. Fatigue has not been much of an issue and her mouth has been less of a problem as well, so we're very thankful.
     And there have been lots of good things about our week too. Three delicious meals that continue to be provided by our church family on chemo weeks, encouraging cards we keep getting in the mail, time with our family (and Joel was able to come home from London 3 times this week), a nice visit over breakfast Saturday with my cousin Jim and his wife Carol, dinner at my mom & dad's with my aunts and uncles from up north, along with other supportive conversations with family and friends. On Saturday afternoon David, Josh and Alison helped Beth to do some initial Christmas baking, so that was special as well (plus I got to take care of Lindsay during that time).

4 Down, 2 To Go

     Chemo #4 today (on a Tuesday instead of Monday, because it was closed yesterday for Remembrance Day) - it's nice to be well over half way through this process. Beth was a little more concerned about treatment this time as it feels like she's going into it already feeling tired. She found herself needing to rest (and falling asleep) more during the day over the past week. Our youngest son, Joel, was able to come from London today to accompany her to the appointments.
     Beth had a couple more encouraging conversations with doctors last week. She talked to the GI specialist on the phone about her blood work, and while some of the numbers are still not where they should be, he doesn't think that any cancer has spread to her liver. However he will retest things in a couple of weeks and if things haven't changed he would consider doing a biopsy. On Wednesday Beth was able to see her chemo oncologist and she said things were going well as far as the treatment is concerned. When she feels for the breast tumour she can tell that it has reduced in size by about half. She too feels that the liver is not involved, that there has to be some other issue happening which is affecting her levels.
     On Thursday Beth had an appointment at Princess Margaret Hospital in Toronto where she is seen every couple of years as followup to her thyroid cancer back in 2002. Actually she was seen there way back in 1983 when she first received treatment for Hodgkin's disease. Josh drove her back and forth (they weren't too thrilled when it took 2.5 hours to drive home) and Beth was glad to see her original thyroid doctor as the last several times she's met with an associate. She caught him up with all that is happening now and he recommended that if she has her parathyroid gland out (which is seeming likely at some future point) that she should consider having the surgeon who took out her thryoid at PMH as he is highly skilled at that kind of surgery.
     Joel also was home on the weekend and we ended up doing a pretty big cleanup/reorganization on Saturday as he needed to get some stuff out of the attic so Alison can bring the rest of her things from the apartment. We went through a lot of material and it felt good to get rid of at least a few things (lots of paper got recycled). As well, we're having some renovations done in our family room by Starkey Contracting (James is a friend of the family and does good work so we'll give him a free plug here - click the link) so things on the main floor are in a bit of an upheaval too. Things are looking great though and we'll soon be set back up in front of our fireplace.
     On Sunday it was wonderful to have the whole family together at our place to celebrate my mom's 74th birthday for dinner. A highlight of my day was after church when I came over to David, who was holding Lindsay, she reached out her arms to be held by me - a first! That night we went to see the movie "About Time" - it was a neat concept, although the time travel stuff is filled with lots of holes. However, in the end it's message is great: take the time to "relish this remarkable life." Important words, but difficult to live out, especially at this time, when dealing with major health challenges. Still, we work hard at staying positive and hopeful.

Ups & Downs (& Ups Again)

     Side effects from Chemo #3 have been pretty similar to the first two times but Beth's mouth has bothered her quite a bit, and for longer this time too. We attended a couple of fun events on the first weekend after her treatment but she couldn't enjoy them quite as fully because of her mouth issues. We dressed up for a stag & doe celebration for Alison's friend (and ex-roommate) on the Saturday and enjoyed visiting with folks there. On the Sunday there was a gathering in Exeter for all of Beth's cousins on her mom's side. We went to a restaurant for a buffet and then back to her cousin Linda's for a huge dessert spread. Unfortunately Beth was pretty discouraged because she took a nice sampling of a few of the goodies but couldn't eat most of them.
     Then on Tuesday morning she had an appointment with the parathyroid specialist but it turned out he couldn't really do it as his computer system was down. So he called later in the day on the phone but it turned out to be quite an upsetting conversation (and in retrospect it should have been done in person). He was investigating her high calcium levels and had the results from the parathyroid scan. He said that there was a tumour on Beth's parathyroid gland and that he was wondering about possible involvement of her liver as her alk phos level was elevated. When Beth asked if he was saying that she could have cancer in her liver he responded that he couldn't really say either way for sure, but that it should be investigated with another specialist (GI doctor). While this information was very troubling, Beth was also concerned when talking to this doctor, as it became apparent that he hadn't read some of the other test results very carefully (if at all) since her CT scan showed that her liver was clear. He also was suggesting she possibly have a drug infusion to treat the higher calcium level but it comes with a whack of more side effects, including severe jaw pain.
     So we were quite discouraged to hear this news and tried not to worry, but that was difficult. Beth was at the cancer centre the next day for a genetic counselling appointment so she went to see about talking with her cancer doctor concerning all of this. She met with the nurse and (after breaking down crying and then pulling herself back together) explained about the phone call. The nurse relayed all of the information to the doctor and then the doctor responded through the nurse, saying that she doesn't feel the anti-calcium infusion was necessary, but agreeing that Beth should see the GI doctor. The parathyroid doc had said that it might be 3 or more months before getting an appointment with the GI specialist, but there was no way we could sit around waiting for confirmation for that long. Since Beth knows this particular doctor from the hospital, she was able to make contact with him and got to see him on the Thursday afternoon. He went through all of the results with her and told her that the tumour on her parathyroid was benign and that he didn't feel the liver was involved. He ordered more bloodwork and explained that one of the tests would give him a more definitive determination about her liver. So we felt much more hopeful after she met with him.
     In the midst of all of this it was really nice to have a couple of evenings with our granddaughter Lindsay. Our son David was away the whole week because he was travelling to Nova Scotia to help the organization he volunteers with to dismantle and bring a back a fighter jet that was on display there. So we invited Rachel and Linsday over for supper on Tuesday, and went out together on Thursday too. Lindsay just turned 8 months this past weekend and she is so much fun to be around - she's such a happy little girl and it's just amazing to see her interact with people and her environment.
     On Friday we had a nice visit with Beth's sister and brother-in-law, Sharon and Ted, along with their granddaughter Jenna. This past Saturday we had a great breakfast out with a newer couple from church and then Beth's sister and brother-in-law from Chatham, Bob and Elaine, dropped in for a visit on their way to Toronto. We shared some great laughs (always therapeutic) and were so touched when Elaine presented Beth with a beautiful quilt that she'd made for her. She'd been gathering up pink material for the past months but as she said she had no idea at the time that she'd be using it for her sister. Then on Saturday evening we went to a wonderful concert in town by a singer-songwriter we like (Jacob Moon from Hamilton) who was playing with the KW Chamber Orchestra.
     On Sunday evening (yesterday) Beth was anointed and prayed for by the leaders of our church. This was a special time - we so appreciate the prayers and support of our many friends, relatives, and brothers and sisters in Christ.