Things are finally slowing down!

There isn’t much going on for me these days which is a relief after the ordeal of the last 8 months! I go every three weeks to the Nipawin hospital for my Herceptin injection – so far I’ve had 3 of them here and they are going okay. I am usually tired that day and the next so I just come home and take it easy. Other than that it is business as usual. I even went into work for 2 days and helped my coworker bake for the snack program but then I had to go home and have a nap. I still do need that ½ to 1 hour nap a lot of the time. I am going to the gym usually 3 or 4 times a week. Now that the radiation burns are healed the skin is very tight so I lost some of my range of motion again. I am working really hard at getting it back but I have a ways to go. I'm hoping to be back to normal when I see the plastic surgeon but so far there has been no word from him anyway. My fingernails are so close to being back to normal again. The fingertips - especially on my thumbs are still a little sensitive and my tongue still feels a bit strange. I think about 1 more week and I will be able to have a manicure! However my hair is growing sooo slow. It will be at least another month and maybe two before there is enough there to do anything with.

Good bye Dr. A.

I went to Saskatoon yesterday for what was to be my last appointment with Dr. A before he moves to Arkansas - where the winters are warmer ;o( Unfortunately he was sick so I had to see another doctor. This other doctor was okay but he didn’t take as much time to answer my questions and I felt kind of rushed to ask everything. (Dr A is going to be a tough act to follow and I am going to miss him!) He did recommend that I get the H1N1 vaccine and that the risks from getting the virus outweigh any risks from the vaccine. I don’t have to go back to see (whoever I get now) for 9 weeks. So far my heart scans have all been good but I will get another one in Dec. I got another 6 month supply of Tamoxifen which they give me free of charge.

I asked him if the tingly tongue is from the Tamoxifen or the Herceptin. He said neither. It is still from the Taxotere. So after 4 months the Taxotere is still rearing it's ugly head!

I noticed the other day that my toe nails are also starting to come off. (which is also a carry over from the Taxotere) I am hoping that it will be more like my ring and pinky fingers were. Since you don’t use them much, they grew out enough that I could just peel the old one off and it didn’t hurt at all!

My doctor had called on Friday but for some reason the receptionist gave him Murray’s cell phone number which was turned off all week end. I did get to talk to him on that Monday and he told me to try a number of things like calamine lotion, aloe vera cream or I could use Emla cream. Emla is the anesthetic lotion I put on my port before I get chemo so it doesn’t hurt when they punch the needle into it. I thought that was a great idea so I smeared that on as soon as I was done on the phone. Holy mother of god - it stung so much for about 5 minutes until the anesthetic kicked in and it didn’t give relief for very long after that. The next day the doctor’s office called since I was on a waiting list to get an appointment for my annual complete check up and they had a cancellation for that afternoon. I told him that the Emla cream was not a good idea! When he saw it he told me to keep it dry by putting powder on it. I used cornstarch and that is what finally gave me some relief. It cut down on the friction of my arm rubbing against it. After 2 days it started getting itchy so I knew I was on the home stretch. It was extremely itchy for about 3 days and I thought I would go mad. Finally after 11 days I was back to normal. I could wear regular clothes and resume day to day activities.

I have joined the gym and I discovered that am really out of shape from this whole ordeal (what a surprise!). My fingernails are just over halfway there. The top half is still quite brittle and not good for much but I can scratch my itches again. I think I should have them back to normal in 2 or 3 months. My hair is slowly coming in. It is about ½ inch long and not in the color I ordered!! I’m told that sometimes it does change after a few months so there is some hope but I don’t think I will hold my breath. Also there doesn’t seem to be any curl to it yet.

I had my first injection of Herceptin at the Nipawin hospital last week. It only takes half an hour for the infusion but it takes the pharmacy a long time to get it ready. I was there for over 2 hours so it was nice to only have to drive a few blocks home instead of 3 hours. I could relax and take it easy. I still have to go into Saskatoon the week before my next one for blood work and to see the oncologist.

Radiation Burn

By Friday I was in complete agony with this under arm burn. I waited by the phone all day for my doctor to return my call and he never did. Grrr. I got up on Saturday and went to see the doctor on call at the hospital. The nurse put some Flamazine (which they keep in the fridge) on it and some gauze. It was so cold but instant relief. The doctor then prescribed some Flamazine for me to put on it and also told me to take my Tylenol 3’s or to take 1 full dose of Advil and 1 full dose of Tylenol together. The Flamazine feels oh so good but you can only use it once per day but the Advil/Tylenol mix is a pretty good pain reliever. I look forward to the day when I can do my own thing and not worry about what hurts….

On Wednesday I Rang the Bell

At the Saskatoon Cancer Clinic in the radiation department there is a bell on the wall just outside of the waiting room. It is called Taya’s Bell and on it is written:

Ring this bell to honor your last treatment.
Let the sound fill your heart to signify the bravery of your life’s journey.
Taya Rae Sawka
Age 5
Medulloblastoma

Well radiation wasn’t exactly a walk in the park either! I mean it didn’t hurt to get it but the last 3 days were a killer. I have a really bad radiation burn under my arm and the doctor told me on Wednesday that it will peak in about 4 or 5 days. So it is going to get worse before it gets better. I have saline compresses to put on it and I am supposed to leave it open to the air as much as I can. Also I am not supposed to do any vacuuming, carrying groceries or anything that will create friction under my arm. (Aww Darn!) It feels like it is on fire already so I can’t imagine what it will be like on Saturday!

As much as I enjoyed being in the city the last 5 weeks, I am really happy to be home. I will get my next dose of Herceptin at the Nipawin Hospital so I won’t be going into Saskatoon for at least 6 weeks.

Today a very nice friend sent a cleaning lady to my house. It was really nice to have that done since I haven't been here much during the last 5 weeks and before that I was too sick to do much more than the basic cleaning. That was the best present ever - Thank you!

I was very sad on Tuesday when my medical oncologist (Dr A) told me that he is leaving for the US in the next few months. I will miss him.

Halfway There

I am halfway done the radiation treatments. They have been scheduling me late on Monday and early on Friday so that I can spend more time at home. By 8:30 this morning I was all done my treatment and was on the road. Today they did the verification again to make sure that everything is still lined up right. So far the only side effect I have is the tight skin and muscle. When I saw the doctor on Wednesday he said that should go away gradually after I was all done the treatment. I do my stretching exercises faithfully every day and it just seemed like I regressed overnight.

On Wednesday I had my third Herceptin injection. It does make me a little tired – I had to have a nap that day and again today when I got home. It also gives me a sore mouth but nothing like I had with the chemo drugs. This is just a bit like when you burn your tongue – it feels a little uncomfortable but I can still eat everything.

The Tamoxifen is an anti estrogen and it is giving me hot flashes really bad! I spend half the night sweating and the other half shivering. This disrupted sleep may also be why I am so tired in the daytime!

So far 5 of my fingernails have come off completely. The new nails are grown up about ¾ of the way but they are not coming in very nice. The other ¼ starts out as a very thin layer of nail but it becomes brittle and breaks off in little chunks. They are quite tender and catch on everything. Last week I had the bright idea to try gel nails. My dear niece put them on for me. Even though I still can’t use them for a lot of things, it is such a relief to have the covering on them. It makes the simplest things like washing and drying my hands so much easier. For some reason my right thumb nail won’t stay on. It came off the first day and she kindly re-did that one. Well the second time it came off even faster. (It isn’t completely off, just cracked and I have to keep a Band-Aid on it.) Hopefully when I get to see her next week my nail will have grown that much longer and it will have enough to hold the gel in place. My hair is starting to fill in but it seems to be taking forever to grow!

I am really happy to be sleeping in my own bed for the next 4 nights!

Radiation

Well first of all the biopsy came back clean so I was able to start the radiation this week. That was a real relief for me! I had to go in on Tuesday for my verification. This is where they check the positions to make sure that everything is lined up and they go through the motions of what will happen without using the radiation beams. On Wednesday, Thursday and Friday I had my first treatments. All the staff in there are amazing and it is a piece of cake really. You just lay there with your arms above your head holding onto some bars and the machines are rotating and whirring all around you. It takes about 10 minutes and you feel nothing. The hardest part is lying completely still on that hard surface. My back is really sore these days and I am not sure if I can take my anti inflammatory pills for that. I guess I will have to ask the doctor or pharmacy if I think of it next time I’m there.

Now I just have 22 more treatments to go. I should be done on September 23. This is probably the worst time for me to be away as everything in my garden is really producing right now.

I also had another bone scan on Tuesday. I don’t have the results yet but the technician did show me the pictures and everything looked the same as the first ones so I think that is also fine.

Vince had his lasik eye surgery on Wednesday and everything seems to be fine there as well. His vision improves every day.

Mammogram and Ultrasound

I had to be at the clinic at 8:30 a.m. and I wasn’t allowed to have anything to eat or drink for 8 to 10 hours before. I got in right away for the abdominal scan and then pretty quickly for the mammogram. Mammograms are awful enough at the best of times but I just had the biopsy two days before that. I told the girl to be gentle with me and she was really good. Unfortunately the radiologist thought he needed more pictures so she had to do it a second time. Then she was having some problems with her films and I ended up getting squashed a total of seven times on the second go around. After that I waited a long time before they finally took me in to do the ultrasound. As soon as she was done the radiologist came in to give me my results. It looks like it is just cysts and calcium deposits. He said it is nothing to worry about unless the biopsy comes back with something as the mammogram doesn’t always show everything. By this time it was 11:30 and I was almost ready to eat my hand. I had made arrangements to meet Val for lunch just two blocks away at Moxies. We had a nice visit and a great lunch.
Now I am just waiting to talk to Dr H on Monday with the biopsy results so I am still not 100% sure but I'm feeling pretty relieved anyway.

New Developments

I did go in on August 5 to get set up for the radiation. It took about 45 minutes all together. It was kind of a waste of the 6 hour round trip to the city for me. They just got me lined up on the machine. I had to lay on my back with my arms grabbing a bar behind my head. There is a place for my elbows to rest on. They gave me two little tattoos that look like little pen marks and that was about it.

I went into the city again yesterday to see the oncologist and today I got my second shot of Herceptin. Last week I happened to find a lump in the other breast so I showed that to Dr. A. He said that it would be very rare for the cancer to come back during treatment but until we know for sure we have to treat it like it has. He sent me for a chest X-ray and was going to set up a mammogram etc. He called me a few hours later and said that he had already spoken to Dr H (my surgeon) and that I was to meet him at the hospital at 9 this morning. It was great of him to fit me in between his surgeries. He did the core needle biopsy and marked it urgent and he asked me to let him know if Dr. A was setting up the mammogram etc because he didn’t want to duplicate anything but definitely wanted to get this done as soon as possible. If there is something there, they will postpone my radiation treatments.

While I was getting the Herceptin the receptionist brought me my appointment schedule. I have to go back in on Friday morning for the abdominal scan (to make sure my liver etc are still clear) and then I will have another mammogram and ultrasound. I still have to go back in on Monday for another bone scan. She tried really hard to get these all on the same day but I am just feeling lucky that she got me in at all on such short notice.

I will be going into the city from Monday to Thursday anyway next week since Vince is getting his lasik surgery. Hopefully this will all turn out to be nothing and I will also get my radiation treatments as planned.

Radiation Consultation

I am on Day 9 and still no ill effects from the Herceptin. It kind of wreaked havoc with my bowels for about a week but that is all. The evil Taxotere is still rearing its ugly head though. I still have a bitter after taste when I eat certain things, especially sweets. My face is still sensitive and my energy isn’t back completely. The worst of it is that I seem to be losing my fingernails. Some of them (especially the thumbs and index fingers) are barely hanging on. I went for a manicure the other day because I couldn’t stand looking at them anymore. They were so dirty looking and I couldn’t get them clean. She covered them up with some nice nail polish so they look good now but they really hurt today and I keep bumping them. It won’t take much to rip them off so I am trying to be so careful but you know how that goes. There will be some very colorful language when it happens because it already is like that when I bump them – it just hurts sooo much! I just need to keep them for a couple of months since the new ones are only coming up about ¼ of an inch. (Yeah right - like that is going to happen!)

My hair is growing! It is so wispy and fine that I can't even really see it unless I turn my head this way and that to catch the light but it's there!

I saw the radiation oncologist on Thursday. (Dr. V) He is very nice, compassionate and easy to talk to. He took the time to ask about our family and what they are doing. He asked where we are from and asked questions about Nipawin. He examined me to make sure that I have enough movement in my arm to be able to lay in the proper position during the radiation treatment. I was all set and ready to get my tattoos and prepped for radiation but this was just a consult to explain it to me and see if I was willing to go through with it. Now I have to go back next Wed for all of that. My appointment is at 2:30 so I can just go in for the day for a change. They said I will likely start on Aug 17 and go for 5 weeks Monday to Fri.

Starting Tamoxifen and Herceptin

I am still feeling the effects of the chemo. This time it took the full three weeks before I could eat much of anything that tasted like it should. There are still some things that leave a bitter after taste. My fingernails are a real mess. They are yellow and curled and look like I am a smoker (which I am not). Some of them are coming unglued from the nail bed. (These are real fingernails not the fake kind). They are very uneven where they attach to my fingers so they are really hard to clean in spite of my best efforts. My eyes still water sometimes but other than that I am pretty much back to normal. (Oh yeah still no hair or eyelashes….)

I saw the oncologist on Tuesday. He gave me a prescription for Tamoxifen which I will be taking for the next 5 years. They give me 6 months at a time. It is one tablet a day and if I pick it up from the cancer clinic I don’t have to pay for them. They will even mail it out for me if I won’t be in the city. He said my heart scan was normal so Wednesday I would be starting the Herceptin. He assured me that it would not be as bad for me as the last 4 months were. I may get a headache or some achy bones until my body adjusts to it but that’s all. I was still nervous when I went in there for the injection on Wednesday. The nurse also said this wouldn’t be so bad. I told her I read some scary stuff on the internet and she said I shouldn’t read the stuff on there. They started me off with a loading dose (which is bigger than I will usually get). That took 1 ½ hours but from now on it is supposed to take only ½ hour. I didn’t have any ill effects while getting it and as of day 3 I haven’t really had any since then yet either. Also no side effects from the Tamoxifen so far. The doctor wants to see me in 3 weeks so I will get my next dose in the city. After that I should be able to get every other one in Nipawin.

The Last One!

I guess I should update everybody on my status. I did have my last chemo treatment on June 30 – a day early because of Canada Day. Again I felt pretty good that day. The Pharmacist said I should take the Benedryl – 2 tablets 4 times a day for a week and that it might make me drowsy. Oh yeah it made me drowsy all right! I slept for 20 -22 hours a day for the next 4 days! I would wake up for the bathroom or to eat a little bit and then I would be back down for a few hours. I couldn’t sit up for more than 10 minutes at a time. Everything hurt. I also started taking the antibiotics he gave me on day 3 and that just upset my stomach so much that I stopped on Saturday. I just couldn’t face taking any more pills. It took me a full day to wake up so Sunday I was finally able to stay awake for most of the day. All that Benedryl (I only lasted 3 days on it) did stop my face from getting the sunburn look although it does still feel a little sensitive. My mouth didn’t get the scalded feeling so far but it is still coated in a white film and nothing tastes or feels like it should. I am really hungry but can’t find anything to eat. Even the savory things taste bitter or have no taste at all and unless it is something very soft and moist it feels like chewing on sawdust. I’m planning all the things I am going to eat in a week or two. Mmmmm Steak, Greek Ribs, BBQ Burgers, Potato Salad, Lettuce Salad from my garden and my new potatoes should be ready by then too!

Another new side effect is that my fingernails are curling. They are turning a yellow orange color and are curving down on the ends. You know this stuff is potent when it can curl your fingernails!

Roxanne was home for 2 days. I didn’t see much of her since I was always sleeping but she did help me out a lot with cooking and cleaning.

I will see the oncologist on July 21 and will probably start the Herceptin the next day. I am hoping and praying that I don’t have any side effects from that. I couldn’t possibly face a whole year of that! July 30 I will see the Radiation Oncologist so I will probably be starting radiation some time in August.

Just one more to go!

June 10 I was back for another dose of Taxotere. I saw the doctor the day before and he gave me some prescriptions to use to combat all my side effects. I have 2 weeks of antibiotics to start taking on day 3 and some Tylenol 3’s for the pain in the joints. He also said I should take Benedryl tablets for the itchy face and neck. He said we could try decreasing the dosage of the Taxotere by 10% but I said I would see how I do with all these new drugs and if it is still bad we can try that next time. They still monitored my blood pressure really close and I had the cold packs on my hands and feet. This time it took about 1 ½ hours to administer the chemo and I came through it all right.

Again I felt pretty good on Wednesday and Thursday. On Friday I was feeling a little achy and started the antibiotics. I still got all the same side effects but mostly they were not as bad as the first time. I had a fever on Sunday and Monday but didn’t get up to 38C so I didn’t have to go to emergency. My mouth was scalded but I was very diligent with the salt water so it also didn’t get as bad. I still can’t eat much because the texture of most things feels like chewing sawdust but today that is getting better. Anything sweet still has a bitter taste though. My face and neck are quite red and itchy but not as bad as before. My face is starting to peel again though. I have a total lack of energy and I still have to sleep quite a lot. Oh well, that is 5 down and just one more to go.

Audrey is here once again to look after me while Murray is away on his big fishing trip.

An interesting article I found at ctv.ca

This is long but worth the read...

Most cancer patients try nontraditional treatments
Updated Thu. Jun. 11 2009 8:20 AM ET
The Associated Press
TAMPA, Fla. -- With much of her lower body consumed by cancer, Leslee Flasch finally faced the truth: The herbal supplements and special diet were not working.
"I want this thing cut out from me. I want it out," she told her family.
But it was too late. Her rectal cancer -- potentially curable earlier on -- had invaded bones, tissue, muscle, skin. The 53-year-old Florida woman could barely sit, and constantly bled and soiled herself.
"It was terrible," one doctor said. "The pain must have been excruciating."
Flasch had sought a natural cure. Instead, a deadly disease ran its natural course. And the herb peddlers who sold her hope in a bottle?
"Whatever money she had left in life, they got most of it," said a sister, Sharon Flasch. "They prey on the sick public with the belief that this stuff can help them, whether they can or can't."
Some people who try unproven remedies risk only money. But people with cancer can lose their only chance of beating the disease by skipping conventional treatment or by mixing in other therapies. Even harmless-sounding vitamins and "natural" supplements can interfere with cancer medicines or affect hormones that help cancer grow.
Yet they are extremely popular with cancer patients, who crave control over their disease and want to do everything they can to be healthy -- emotional needs that make them vulnerable to clever marketing and deceptive claims. Studies estimate that 60 percent of cancer patients try unconventional remedies and about 40 percent take vitamin or dietary supplements, which do not have to be proved safe or effective and are not approved by the federal Food and Drug Administration.
None has turned out to be a cure, although some show promise for easing symptoms. Touch therapies, mind-body approaches and acupuncture may reduce stress and relieve pain, nausea, dry mouth and possibly hot flashes, and are recommended by many top cancer experts. A recent study found that ginger capsules eased nausea if started days before chemotherapy.
Many hospitals offer aromatherapy, massage, meditation, yoga and acupuncture because patients want them and there is little risk of physical harm. They call this complementary or integrative medicine because it is in addition to -- not in place of -- conventional treatments.
At the other end of the spectrum are quacks selling fringe therapies and supplements through testimonials, not proof. Laetrile, "detoxifying" coffee enemas, shark cartilage -- the miracle cures change but the bogus claims remain the same.
"What I am noticing in the last year or two is a resurgence of these things. It's coming back," said Barrie Cassileth, integrative medicine chief at Memorial Sloan-Kettering Cancer Center in New York and a longtime adviser to the American Cancer Society.
The Internet fuels this trend by letting people buy direct and bypass doctors who could help them see through scams and misleading claims of scientific proof. Sadly, some Web sites are run by quacks -- a "doctor" title doesn't mean the remedy is safe or effective.
"A lot of these doctors prey on people's insecurities and need for hope," said Dr. Roy Herbst, lung cancer chief at the University of Texas M.D. Anderson Cancer Center in Houston.
About 7 percent of cancer patients go straight to an alternative approach, sometimes traveling to Mexico, the Bahamas or a "spa" in Europe for treatments not allowed in the United States, Cassileth's research found. Most cancers spread slowly, so people can be temporarily fooled into thinking herbs or special diets are keeping it at bay.
"After they've been there some months they'll realize things are not working. But with cancer, you get one chance. By the time they get back to a reasonable hospital, they're dead. Nothing can be done for them," she said.
Ways that supplements and fringe therapies can harm:
_Financially. Pills that seem cheap actually cost a lot if they are worthless or are bought in place of real medicine, fresh fruits and vegetables, or other things known to boost health. They also can hook people into spending more for multi-pill "protocols" that make broad claims like "boosting the immune system." One Florida man worked his way up to several hundred dollars worth a month for pills whose contents he didn't know, pushed by a California chiropractor.
_Medically. Trying an alternative remedy can delay the time until a patient receives an effective treatment, allowing the cancer to spread. A potentially curable cancer may become untreatable -- as Leslee Flasch found out when she belatedly sought the surgery that had been recommended. Having such an advanced cancer without standard medical care must have caused excruciating pain, said one of her physicians, Dr. Lodovico Balducci at Moffitt Cancer Center in Tampa.
_Physically. Supplements, even those claimed to be natural, have biological effects and can interact dangerously with a wide array of medicines. People often do not realize this and fail to tell doctors everything they are taking, potentially compromising their care. Some vitamins and herbs can lower the effectiveness of chemotherapy, radiation and hormonal treatments for cancer.
_Psychologically. Futile treatment raises false hope and deprives people of the chance to prepare for the end of life and die in dignity and comfort.
Mary Nedlouf paid that price. She traveled from Orlando, Fla., to a Connecticut doctor who offered to treat a breast cancer that others called incurable. Her husband, Said Nedlouf, said the doctor asked about traumatic events in her childhood to "get to the roots" of her disease. The doctor also passed a wand over her and said he detected a problem with her liver. His treatments were as strange as his diagnostic methods.
"Mary would scream sometimes because those electrical things, those zappers that he put on her, would hurt," Nedlouf said. "What do you do? We're thinking she's getting something, some treatment that's a cure. She wanted to believe, and I wanted to believe for her."
After three months of lost wages and $40,000 to the doctor, Nedlouf said he spent another $13,000 for an air ambulance to take his wife home. She died three weeks later at age 42.
"She suffered. And we lost all this money," said Nedlouf, who filed a complaint in 2007 against the doctor with the Connecticut Department of Public Health that is still pending.
A more common situation is people loading up on vitamins and supplements in a misguided effort to do all they can to beat cancer, or to try to make up for poor health habits in the past.
Leslee Flasch believed that dietary supplements would make her stronger and help fight the cancer -- a belief her other surviving sister, Donna Flasch, still shares despite Leslee's death.
But getting nutrients from pills is different than getting them from a balanced diet, nutrition experts say.
"So many people think, 'Well, if a little bit is good, then more is better,' and that's definitely not true with most dietary supplements," said Kathy Allen, a Moffitt Cancer Center dietitian.
Examples of potential harm:
_Vitamin E can prolong bleeding time and has forced cancellation or delay of cancer surgeries; some studies suggest it may raise the risk of certain cancers.
_Beta carotene, a precursor of vitamin A, may raise smokers' risk of developing lung cancer.
_Folic acid supplements may raise the risk for precancerous growths in the colon.
_Vitamin C in large doses may help cancer cells resist chemo and radiation.
In January, doctors reported that a selenium supplement containing kelp -- which is loaded with iodine -- was interfering with the low-iodine care recommended for a man with thyroid cancer.
Herbals and dietary supplements can undermine cancer treatments in ways that patients can't feel and doctors can't measure. When a treatment fails, it's impossible to say whether it was due to the person's cancer or because a supplement subtly interfered.
"We know that there's some harm going on. We just don't know the magnitude of it," said Dr. Jeffrey White, the National Cancer Institute's complementary and alternative medicine chief.
Studies show that as many as two-thirds of cancer patients who use unproven remedies do not tell their doctors. Sometimes it is because they fear doctors will disapprove, but often it is because they do not realize it can harm their care.
"I didn't think they were medications. They're not prescription, they're not drugs. This is all natural substances, made from natural products," said Vince Palella, a Bradenton, Fla., prostate cancer patient.
During a nutrition counseling session, a Moffitt dietitian, Diane Riccardi, discovered that Palella was taking dozens of pills a day, including a saw palmetto extract. That supplement might have interfered with his hormonal cancer treatments or the monitoring to see if the those treatments were working.
"There's absolutely no way of knowing" if it did, Riccardi said. "The products he was taking were not highly purified -- they were a mishmash," including some labeled "raw herbal extracts," she said. Companies often claim their formulations are trade secrets and do not disclose all ingredients or amounts.
"It's as difficult as finding out what the recipe is for Coca-Cola" to try to decipher what's in them and whether they pose a risk, she said.
Another supplement that can pose a risk for prostate cancer patients is DHEA, which can affect testosterone levels, said Phyllis Matthews, a urology nurse practitioner at a group of Veterans Affairs clinics in the Denver area.
Cancer doctors also worry about isoflavones and other soy-related supplements; some research suggests they might stimulate breast tissue. Breast cancer patients on tamoxifen or aromatase inhibitors like Femara or Arimidex should not use red clover, dong quai or licorice because of estrogen-stimulating components, say guidelines from the Society for Integrative Oncology, a group of cancer experts that Cassileth heads.
Cancer survivors must be careful, too. Using a 2005 nationwide survey, Dr. Richard Lee of the University of Chicago found that half of survivors using supplements were at risk of problems because of other medicines they were taking.
He documented 116 potential interactions, including 9 percent that were major or possibly life-threatening. They included bleeding risks from combining ginkgo and aspirin, and heart rhythm, high blood pressure, and serious muscle problems from taking St. John's wort and Prozac or similar antidepressants.
Supplements also can be dangerous by themselves. Balducci, the cancer specialist at Moffitt, had a leukemia patient who was taking red yeast rice extract, which has been linked to a number of health concerns.
"It caused terrible damage to her liver" and prevented her from receiving chemotherapy for her cancer, which got worse and killed her, he said. Ironically, she was taking the supplement to boost her immune system -- a deceptive claim that has ensnared many cancer patients, including Palella, the prostate cancer patient.
"There are no herbal or vitamin supplements that we know of that will specifically boost the immune system," said Allen, the Moffitt dietitian.
White, at the National Cancer Institute, is angered by ads that tout test-tube results or that make scientific claims like "stimulates T cells" without any evidence that the same substance taken in pill form, or that the T-cell effect described, makes any difference in patients' survival.
"These kinds of leaps are just not acceptable. The purpose of that is to mislead people," he said.
Here, the government does have some authority. In June, the FDA sent 25 warning letters to sellers of teas, pills and other products sold on the Internet that falsely claim to cure, treat or prevent cancer.
The substances included bloodroot, shark cartilage, coral calcium, cesium, ellagic acid, cat's claw, Essiac tea and various mushrooms.
In September, the Federal Trade Commission charged five companies with making false and misleading claims for cancer cures and reached settlements with six others. The agency also started a bogus cures Web site to help consumers. A statement explained its reasoning:
"When you're battling cancer, the last thing you need is a scam."

As the Stomach Turns

I saw Dr. S on Friday and he told me to mix Benadryl cream with Aveeno half and half to put on my face and neck. He also gave me some ear drops because the same thing that is happening on my face is happening in my ears. I am on Day 15 and my face has completely peeled but it is still a little red, my neck is still quite itchy and it is still peeling. Now Dr. A thinks this is an allergic reaction to the antibiotics I was on. (Avelox once a day for 5 days.) Dr. S said I should also try taking a multivitamin again if I can. I stopped taking them because they upset my stomach which he said can happen even when you are not having chemo. I tried today and now I am getting the heartburn and my stomach is on fire so I had to take some anti nausea meds again. Too bad because I am still quite low on energy, I can do a little in the morning and then I need to nap in the afternoon. I usually don’t feel too well when I wake up though. My eyes are watering (a side effect from the chemo) and my mouth still feels like sandpaper. This time around I can’t really eat much as I don’t have much appetite and when I do eat everything just tastes wrong. Anything sweet tastes bitter as does water. Most other stuff (meat, yogurt) feels chalky. A little pasta is about all I can stomach. With the low blood counts they said I should stay away from raw veggies that are hard to wash like lettuce and grapes. The guys were eating chips the other day and since the mouth sores are gone I tried a few. Well, my mouth felt like it was coated in grease! GROSS – that might have cured me from having them for a long time! Just one more week and I have to start over again – UGH.

Taxotere is Evil!

I was doing pretty well for the first two days. Even went for a walk to the bank and post office on Thursday. On Friday I was starting to feel kind of achy in my joints and bones (like when you have the flu) and my whole mouth felt like I scalded it with hot soup. By Saturday I was just completely worn out. I could hardly move. It took all my strength just to roll over or to sit up for a drink of water. On Sunday I got a fever and I was instructed to go to emergency if my temperature went to 38 as this can mean I have an infection. So somehow I mustered up the strength to get dressed and haul myself out to the car. The ER doctor had my blood tested and he thought my blood was okay. He did write me a prescription for antibiotics but wanted me to call my oncologist Monday morning before filling it. Dr A’s nurse had them fax my results to them and he said I definitely need to be on the antibiotics. Too bad I didn’t start them the day before because today (Wednesday) is the first time I have the energy to do more than sit up for 5 minutes. My mouth is so sore that I can’t eat much. What I do eat I can’t really taste and everything feels like chalk and hurts all the sores in there. I have the white coating on my tongue again. My face started to get flushed on Sunday and today it is still flaming red, hot to touch and raw. I have cold sores too! My neck and chest are red and itchy. After being constipated since the beginning of all this I am now going the other way. I don’t know which is worse. Not sure if I can do this two more times… I am really happy that I am well enough to be able to go and watch Roxanne’s convocation tomorrow.

Round 4 - Taxotere

On Tuesday I had my blood work done and saw Dr A. The more I see him the more I like him. Since I’ve had so many side effects from the first cocktail he decided to start me on the Taxotere alone and he will introduce the Herceptin next time if all goes well. This way we can see which drug is causing problems. My blood is good to go but I was horrified to discover that I gained 8 pounds in the last 6 weeks!!! They all assure me that this is from the Dexamethasone (which is a steroid) that I had to take for 5 days after the first three treatments. Now I have to take it the day before, the day of and the day after for this one. It makes my face red and hot from my eyebrows to my chest and it makes my face puffy like a big moon. (Not very attractive!) It also makes you want to eat all the time! It kept me awake the first night so the doctor prescribed some sleeping pills for me. Last night I had the best sleep – 7 hours straight (well one bathroom break and it felt like I was walking on tree stumps to get there). The main thing that the Dexamethasone is supposed to help with is to keep you from retaining fluid in your arms and legs and to help with nausea.

They monitor you very closely when you are getting the Taxotere for the first time. The nurse checks on you every few minutes and they take your blood pressure every 15 minutes. You are to watch for shortness of breath, heart palpitations, skin rash or back ache. Fortunately all went well for me. Another side effect of this one is nail changes – they can turn yellow or orange and get very brittle. To combat that I had to wear cold gel packs on my hands and feet for the two hours of the infusion. You can’t do anything with big oven mitts on your hands so just listened to my ipod to pass the time. They are very up on everything there and sent me home with a Taxotere kit. It had nail hardener, lotion for the dry skin, soft toothbrush and sensitive toothpaste, alcohol free mouthwash and of course more information.

Other than taking a few extra anti-nausea drugs yesterday all has been good! So far everything I’ve eaten yesterday and today hasn’t bothered me. Besides the Dexamethasone I only have to take the other drugs as needed so no more 22 pills a day for me! YAY I don’t know when the side effects of this one are supposed to kick in. I do have some eye tearing but there is also the numbness and tingling in hands joints and muscles, shortness of breath, nausea, red itchy shedding skin, mouth sores among others that can happen. Maybe I will be lucky this time!

Look Good Feel Better

Yesterday I had the opportunity to attend a Look Good Feel Better Workshop. My friend Petra drove me to the city and we had a really nice day going out for lunch, shopping and attending the workshop – thanks again Petra! These workshops were created from the concept that if a woman living with cancer can be helped to look good, her improved self image will help her to approach cancer and its treatments with greater confidence. Through special cosmetic techniques and hair alternatives, women are taught how to manage the appearance related side effects of cancer and its treatment. These (totally free) two hour workshops are offered in many hospitals and cancer care facilities across the country by over 1200 dedicated, certified volunteers along with facility coordinators and community partners.

I already had my wig and I knew most of the make up techniques they taught but I was really happy to learn how to draw natural looking eyebrows. My next three treatments will likely cause them to fall out. In addition each of us taking the workshop came away with close to $250 worth of cosmetics and skin care products that are all donated by the Canadian Cosmetic, Toiletry and Fragrance Association (CCTFA) Member Companies. If you want to learn some of the techniques, check it out at www.lookgoodfeelbetter.ca

In just another 5 days I will be going back in for my next treatment. I am now all done with the FEC cocktail and I can only say good riddance to that. I have now talked to several people who have also had it and they had literally no side effects. Yesterday I met a lady who also had the wonder drug that I had and it worked really good for her. It’s hard for me not to be bitter since it was really all pretty bad for me! :-/ Next week I will be starting my one year of Herceptin. It will also be my first of three doses of Taxotere. Since I already have anti nausea medication to take starting the day before (if I forget they won’t give me the treatment) I can’t help but think that this isn’t going to be so great for Berny either. The good thing is that I am half way through these six bad ones. The Herceptin is (supposed) to have no side effects but I will believe that when I see it.

Not so wonderful after all :o(

It turned out that my wonderful drugs only worked for two days. I got three pills and the last one did nothing for me, in fact I felt worse than the last two times. I am now on day 6 and today I finally feel a little more with it. I spent the last 4 days in a fog where I mostly slept and tried to figure out what I could eat to get rid of the burning in my guts. Today I am getting the sore mouth again so I guess that is part of the cycle. This time it feels like I burnt my tongue but I know that when my mouth starts to get sore the other symptoms usually get less. I would much rather have the sore mouth than what I had the last few days anyway! I had an appointment scheduled for a massage yesterday. It took all my energy to get there but I was sure glad I made the effort. I felt so much better after. I went to bed at 8 pm and was able to sleep all the way till 6:30 this morning (with bathroom breaks of course!) That has to be a record for me!

The Wonder Drug

I was absolutely dreading round three but as soon as I got there I met with the Pharmacist and she went over all my drugs with me again and got me to go to the upstairs Pharmacy to pick up my new wonder drug Emend (Aprepitant). She called it the crème de la crème of anti nausea drugs. They are a little expensive at about $40 per pill but with Murray’s drug plan we just had to pay about $26 for the three of them and they are worth every penny. I had to take the first one right away and then wait 1 hour before I could start the chemo. The other two I take with breakfast on days 2 and 3. These are on top of all the other ones I still have to take but I am down to about 14 pills a day. About 3 hours after the chemo I could tell that things were starting. I was getting really tired and feeling kind of worn out but no nausea!! (Although it does come with it's own set of side effects. Very dry mouth, red face, neck and chest and fatigue to name a few) On the way home we stopped in Wakaw for supper and at Joan’s suggestion I just had some toast. That was what I should have been doing all along. Incidentally, in the elevator (an elevator that we never had to use before) on our way up to the Pharmacy there was a sign about signing up for nutrition counseling where you can learn what to eat and what not to eat before and after Chemo. I could have used this information a whole lot sooner but I plan on calling them today and also will suggest that maybe they could have their signs in the waiting rooms!

You know on your first chemo session they give you all these drugs and lots of information to read and you are just bombarded with so many things. It is a little hard to take it all in but by round 3 I have figured out a few things. For instance, on a couple of the symptom charts (that comes with each kind of medication) it says you can have either constipation or diarrhea with them. Now I am no doctor but I think that common sense should tell you that if you are the type of person that suffers from occasional constipation then starting on Day 1 you should take what they give you for that. If you are the type of person that goes the other way then on Day 1 you should start taking what they give you for diarrhea. Also it takes a while to learn which drugs work on the different symptoms. I mean you are taking between 5 and 6 new drugs that you have never seen or heard of before along with dealing with the symptoms of 2 or 3 chemotherapy drugs.

Now I am done the three sessions of FEC (Fluorouracil, Epirubicin, and Cyclophosphamide). YAY!!! That is three down! Next time it will be two new chemo drugs and a whole new ball game of symptoms and drugs to combat these new symptoms.

Another thing I would like to address is some of the emails I have been getting about miracle cancer cures. Now I know that you mean well but I want to tell you now and anyone else who is considering sending something like this to a cancer patient. DON’T DO IT!!! I’ve started on this path where I have placed my trust in the medical profession and I have to see it through. They have been doing this a long time, they are very well organized and they have a lot of research behind them (and ongoing research in front of them). There have been some things I have asked my oncologist about and he is very honest and open with me. For instance yes, take all the vitamins I want (but I can’t usually stomach them anyway), he was a little bit skeptical but yes, if I think acupuncture will help me go for it. Yes, eat whatever I feel like eating including antioxidants (in his opinion nothing has been proven about them interfering with the chemo drugs). I haven’t asked him about drinking asparagus juice by the gallon (an email I have now gotten 3 times) because honey with my nausea that is just a recipe for disaster! That isn’t the only email I have gotten. They are too numerous to mention and frankly I just find them upsetting and they add to the confusion of all I have to learn about and do re the second paragraph above. So again I know you mean well and you have my best interests at heart but please before you send me anything else, check these things out at snopes.com or run them past your own doctor before you send them to me. If (and that is a big IF) I ever get to the point where they say they can’t do anything more for me and I need to get my affairs in order then and only then would I consider trying some of these alternative treatments. Until then for my own sanity it is delete, delete, delete. Now excuse me while I step down off my soap box for today :o)

The Port

Round 2 turned out to be much worse than Round 1 and I was sick longer – 10 days rather than 1 week. I got a very sore throat on day 7 but it didn’t stop me from eating. That day I wanted to eat everything in sight and I had major hunger pangs all day that wouldn’t go away even after I ate something. In the evening I felt so fat and bloated from eating all day and even though I still felt really hungry I just decided I wasn’t eating any more. About an hour later it felt like my stomach was on fire and that lasted into the night. The homecare nurse came the next day and she said she would talk to the Pharmacist at the hospital to see what I could take. He suggested I continue with one of my anti nausea drugs (Domperadone) and even though it wasn’t really nausea that I felt, the pills helped. He also suggested another one for my doctor to prescribe but it took 3 days to get a hold of him to call in the prescription. The Domperidone helped quite a bit but I still had that burning in my guts until I got the new pills. On day 11 my tongue cracked. You couldn’t see it by just looking but if I put my fingers on either side and spread it apart you could see these little tiny cracks all over the tip of my tongue. That was pretty painful for a couple of days too. The second 10 days have been much better.

Last week I got to see my doctor – an appointment I made 2 months ago! He gave me some things to try so my symptoms maybe won’t be so bad next time. On Thursday we went to Saskatoon again and I got my new port put in. This was much easier than getting the PICC line since I had an idea of what to expect. It was great getting the PICC line removed and I didn’t even feel them pull it out. This one is much the same in that there is a tube that threads into a vein in my bicep and loops around like an upside down U and ends up somewhere in my chest. Instead of these two 4 inch tubes sticking out of my arm I now have what looks like an upside down bottle cap just under the skin. It has a rubber top that is supposed to be good for up to 500 needle pokes. They can use this to administer the chemo drugs and also to take blood. (Only now it has to be the on call doctor or there just two nurses at our hospital that can take the blood from the port). For now my arm is bruised and a little sore (and very itchy so I guess it is healing already).

Round 2 - April 8

First I saw the oncologist Dr. A. on Tuesday April 7. I wasn't too sure about him at the first meeting but he is starting to grow on me. At least he seems to have a sense of humor. I told him that this PICC line is very uncomfortable, itchy and quite cumbersome hanging out of my arm and that I would really like to get a port so that I can have a shower. He said it isn’t that they don’t take the ports out but that it is considered surgery to put it in and another surgery is required to remove it. I said I would be okay with that so I am scheduled to get the port on Apr 23. YAY

He said my blood was “not bad” so I was ready for round 2 on Wednesday. This time I was placed in one of the chairs by the front desk to get my chemo. I found it hard to sit in one position for 2 ½ hours (my feet couldn't even touch the floor) – not good for someone with a bad back. I will try for a room with a bed next time. Once again I felt really good until about 3 hours after and that night I had the worst night so far. I took my anti nausea drugs early and went to bed at 7:30. Sometime during the night I started feeling better. He upped my pills and that seemed to work for the second day but day 3 and 4 haven’t been so great. This morning Murray made coffee and I couldn’t even stand to be in the kitchen or to have his cup of coffee anywhere near me. I never had any reactions like that the last time.

I am starting to get accustomed to seeing my bald head in the mirror (at least it isn't quite so shocking as at first) but it looks like I am losing my eyebrows too :o(

So that is two down and just one more of this cocktail to go. Hopefully the next mixture they give me won’t be as bad for me.

Click to Give Free Mammograms

I've bookmarked this site and I go there first every day when I log on to my computer. It just takes a matter of seconds:

Each day thousands of concerned supporters and survivors visit The Breast Cancer Site to click on the pink button. This simple act is free, takes a matter of seconds, and gives the National Breast Cancer Foundation funding to provide cost-free mammograms to women in need.
Please join this community of hope! Click the button today and every day.

Also if clicks total 200 mammograms in April, The Breast Cancer Site will donate $10,000 to help fund research for a cure through their charitable partner, GreaterGood.org.


http://www.thebreastcancersite.com/clickToGive/home.faces?siteId=2

Today is the day...

Today is the day my hair is falling out – day 13. Last night when I went to bed the top of my head was really sore. Not headache sore but it felt like someone hit me and it was bruised. This morning when I had a bath and washed my hair it started coming out by the handfuls. When I run my fingers through it I get a lot each time. My friend is coming over after school to cut it off for me. I hope I still have some for her to cut by then! I was going to bake something today but I guess that isn’t such a good idea :-/

Audrey left yesterday. We had a nice visit. It was really great having her here as I was still in a fog when Murray and Vince left for Red Deer. She helped me out a lot with cleaning, cooking and baking and she encouraged me to get out of the house for walks and stuff.

I thought I was going to get away without the mouth sores but they started on Sunday. Other than that I am pretty much back to normal and I’m getting used to having this life line hanging out of my arm. I didn’t even need to have a nap yesterday!

Side Effects

If you are easily grossed out or don’t want “too much information” you probably shouldn’t read this next section…


Like I said before, I felt really good right after the injections so we went for lunch. We went to a restaurant that had Irish Stew and Soda Bread for their special and it sounded – and tasted so good to me! It wasn’t a very big portion but in hind sight it was a bit too heavy of a meal because as the afternoon wore on I started feeling more and more nauseous. Now the thought of anything like that turns my stomach and I think it will be a while before I can eat any beef.

Even though I haven’t actually vomited, I was very nauseous on and off for the first two days. I woke up on day 2 just famished and when I am hungry I have to eat NOW! I made some porridge and that just tasted so good. I crave soft bland comfort foods (white cheddar macaroni, scrambled eggs, boiled potatoes with butter, fish, chicken breasts) and fresh fruit and vegetables. I think the fruit and veggies go down so well because they quench my thirst. The drugs make my saliva very thick and my tongue is coated in this white coating. I am always thirsty but anything I drink – even water leaves a sour or metallic after taste and the fruit does too but not as quickly. Now I am starting to get the sores in my mouth so I need to go out and get some alcohol free mouthwash.

I had to take 12 pills on the first day for anti nausea, 2 for heartburn, and 4 for constipation. Believe me - when you are that constipated you can’t think of anything else! Now on Day 6 I am down to 2 for heartburn and 2 of the anti nausea as needed. YAY I hate taking pills and this is way, way out of my comfort zone.

I usually get up really early because I am so hungry and then have a nap later in the morning or sometimes in the afternoon. Last night I slept after supper for a bit. The pills make me drowsy. Bathing with this PICC line is difficult because I can’t get it wet. We have to wrap my arm with saran wrap and tape it but it is hard not to get my elbow dipped in the water. I really miss my daily showers but at this point appearance takes too much effort and isn’t on the top of my list of priorities. Hopefully that will come back….

Today I am feeling a little better and seem to have a bit more energy. It is surprising how quickly I tire out though. My sister Audrey arrived on Saturday to help me out. She is busy cleaning my bathrooms (thanks sis!) and she made a really nice supper for us last night. Later we might venture out to the grocery story. Murray and Vince are going to Red Deer on Wednesday for Vincent’s audition so she will be here to baby sit me ;o)

In some ways this is what I expected but it could be a lot worse. As much as I despise taking all these pills, it is better than puking for days on end. If that were what I had to face, I am not sure you could drag me back there for another go at it!

Some of you have expressed concern about knowing when to phone. Phone calls are great any time as this is a boring existence. Don’t worry about waking me – I can always go back to sleep. If I can’t take your call please leave a message and I will call you back when I can.

March 18 - Chemotherapy – A Necessary Evil

My Appointment was at 9 AM. First they gave us a little tour. For the seasoned recipients, there are a few big chairs for administering the chemo out in the open by some windows overlooking the river. They also have many little rooms with hospital beds and since it was my first time and they had lots of information to go over, I got one of those rooms. There are two places that you can get juice, water and cookies and they have a big oven for warming blankets that you can help yourself to. Whoever came up with heating those blankets is a genius. They are the best thing ever!

I had a nice pretty young nurse named Erika. She let me ask questions then went over some history and exactly what was going to happen today. Then she let me ask more questions. First she flushed my lines with saline and then I got a little pouch of anti nausea drugs. She flushed the lines again and started with the first chemo drug. That one took about 5 minutes. Since none of these drugs can touch each other, she flushed me again and put through the next drug. This one is bright red and it makes you pee red for a couple of days. This one took 10 minutes. I got really hungry in there so Murray went to get me some of those cookies and juice. Also somewhere in there the Pharmacist came to talk to me and gave me all the drugs I have to take for the next week or so. Then the nurse did another flush and the last drug which took about 30 minutes. I slept through most of that one because by now the anti-nausea drugs were kicking in. Another flush and I was free to go. I went to the bathroom and red stuff was already coming through!

I felt really good and it was lunch time so we stopped and had lunch on the way home. The nurse said I would probably feel the same as I always do until next week when the white cell counts go down. Well she couldn’t have been more wrong. As the afternoon wore on and the drugs started wearing off I was feeling worse and worse. On the way through Tisdale Murray suggested stopping for donuts and my stomach did a flip flop. Even the thought of having them in the van to smell was more than I could bear. By supper time I was really bad (no vomiting but just really bad nausea). I knew I had to eat or drink something so I took my pills. I had some minestrone in the fridge but I took one look at that and it was just too chunky so I had about a cup of chicken noodle soup. I felt great for about 20 minutes and then it was back. I lay around and watched some American Idol. I had to look away if they were moving too fast. I couldn’t wait for 10 o clock when I could take the other pills and go to bed. I had one really good one that helped a lot.

Today I am still not great but a lot better than yesterday. I have been able to have some toast, more soup, a pear, crackers and some juice, I have yet more new pills to take today so maybe that is what is helping. One of them is supposed to give me rosy cheeks but my face is red from under my eyes right down to my chest.

PICC Line - March 17

On Tuesday I had to go to Royal University Hospital to get my PICC line installed. First they put an IV into my arm and then wheeled me into the X-ray room. They injected a dye into the IV to help them locate a nice big vein. They cleaned my arm and draped some cloths over it. The Radiologist came in and he froze it. That part hurt the most because it really burns and then the burning spreads out in every direction. At some point they made a tiny incision and inserted this catheter into the vein using the ultrasound to guide it into place. It starts about ½ way up my bicep and goes all the way up my arm, loops around and ends up near my heart where the blood flows quickly. (kind of like an upside down U). There are two little lines coming out the bottom with valves on the end. They can use this to administer the chemo drugs, saline or to withdraw blood. It really isn’t as bad having it as I thought it would be. It was just very sore the first day and night but it is a big PITA when I need to bathe or shower because I can’t get it wet.

That night when I was getting ready for bed I noticed there seemed to be quite a bit of blood around the incision and it looked like the lines were right full of blood. This freaked me out a little because I wasn’t sure if it was normal. I called emergency at RUH and they didn’t know but they told me to call the Health Line. They weren’t sure so they told me to call emergency. I said I already talked to them but she said try to talk to someone in oncology. Yeah right this is 11:30 at night! I called back to emergency and she said she could call the oncologist on call but I didn’t think this was serious enough for that. She then put me through to the nurse on the 6th floor because they have cancer patients and deal with PICC lines a lot. That nurse said I probably should come in and have it flushed. The emergency department in the city at midnight is quite a bustling place but fortunately I didn’t have to wait too long though and the nurse at the desk just put me in a room and took care of it. It turned out that once I got under those bright lights it was just the color of the line and there wasn’t any blood in it at all. I felt kind of foolish but she flushed it out anyway and all in all we were only gone about 1 hour counting the driving time to and from.

Now homecare has to come in once per week to flush the lines with saline to keep them from clogging. I think I am going to have this thing for the next 14 months. UGH

I finally had my appointment at the cancer centre on Tuesday. First I had to give some blood. Then I filled in some forms only to have the nurse ask me the same questions and write my answers on another form. Then I met my oncology doctor and he examined me. After that I was able to get dressed and they came back in and he went over everything that I have done so far and what is to come.

All this time I thought I was having 5 days of injections followed by 17 days off times 4 but that isn’t right. I will be on chemo for over a year! First I will get three drugs – Fluorouracil, Epirubicin, and Cycolphosphamide in one injection every 3 weeks times 3. (This is appropriately called FEC!) Then I will get a drug called Taxotere also one injection every three weeks times 3. At the same time (as the taxotere) they will start me on Herceptin which is also one injection every three weeks but this one will go on for one year. Sometime during all this I will also have 5-6 weeks of radiation but I am not clear on when that will be. At the end of the year I will go on anti HR treatment (something like tamoxifen) for 5 years.

On Wednesday I had my MUGA scan (heart scan). First they take out a tube of blood. Then they mixed it with some radioactive markers and injected it back into me. Then I had to lay on a table same as the bone scan and they scanned my heart for about 10 minutes. Some of the drugs I will be on can damage your heart so this is something I will have to keep doing to make sure that isn't happening.

So that is it in a nutshell. These drugs can have pretty awful side effects and I will have to stay away from any germs. At this point I can hardly imagine doing this for a whole year. I got my call this morning and on March 17 I will get my PICC line installed. That in itself sounds pretty frightening! March 18 will be my first chemo treatment.

The First Oncology Appointment

Well I finally got my letter in the mail today and I will meet with the oncology doctor on March 10. That's just two weeks away people!

The antibiotics seemed to take care of any infection that might have been brewing but they didn't get rid of any of the fluid that was built up. I couldn't get an appointment through the office so I went to the hospital and I was lucky that Dr S was working emergency that day. He syphoned off 200 ml of fluid! It didn't hurt, in fact I didn't feel a thing. It was completely painless and didn't get sore the next day either. On Tuesday it was 9 weeks since the surgery so he said he would call the cancer clinic next week if I still didn't have an appointment.

The fun just never ends.

I still have quite a bit of fluid built up and it seems to be getting worse instead of better. I had to put the compression sleeve back on this morning since my arm is also starting to swell. Dr. S has me back on antibiotics and if it isn’t improving in a week I have to go back and get it aspirated. He said not too worry, it won’t be that bad. That’s easy to say when you are on the giving side of the needle! Actually I’m sure it can’t be any worse than anything else I have been through lately.

I got a package of information from the cancer clinic today. Still nothing about an appointment with the oncologist though.

Still in Limbo

I called the cancer clinic this morning to see if they could tell me how much longer I will have to wait. She said it depends on a lot of things like whether they have all your reports and the availability of physicians. She did look up my name and said that it was good news because I am at the referral stage. So that means I am in the queue and they will call me as soon as my name comes to the top of the list.

Other than that I feel great. I’m keeping busy, staying out of trouble and doing my exercises every day. I will post as soon as I get more news.

FINALLY Some Good News!!!

My liver scan and bone scan both came back clear and I can’t even begin to tell you how happy and relieved I am about that!

The bone scan was so easy. Just a little injection into my arm and then we went for lunch. They told me to drink lots of fluids and come back in 2 hours. When I got back I just had to lie on a very narrow table very still for 20 minutes while it took the pictures. Laying still that long was the hardest part because as soon as I knew I couldn’t move, my legs went numb and my face got itchy! She said the results take 7 – 10 days to come back but if you have a doctor’s appointment before that, he can call for the results. I said I have an appointment in 2 hours and she said they could give it to him by then so that was a real bonus to get them already today.

Dr H was very pleased with how well everything is healing. He gave me my pathology reports and explained it all to me. They did find the primary source and he did say that there was so much going on in there that he is certain we did the right thing to do the mastectomy. When I am all done my treatments in 6 months time or so he wants me to come back to see him to get the mastectomy on the other side since I am at a high risk for recurrence. He also said I am at Stage 3 which is worse than we originally thought. Stage 4 is the worst it can be.

We also went to Pink Tree to buy a prosthesis. A very expensive trip but thankfully Murray has a good insurance plan through work that will pay for it. I looked at a few wigs but didn’t try anything on yet. They look nicer than my real hair!

Now I just have to wait some more for the cancer clinic to contact me with an appointment with the oncologist. Not sure when but I am expecting that it will be the end of January or early February.

I had my second physio therapy session today and things are progressing nicely. I have a ways to go with my arm mobility but I’m doing well when you consider the last surgery was only 3 weeks ago. (It seems like a lot longer than that!) The fluid pocket that developed after surgery is going down so yay I shouldn't have to have it aspirated.

Dr. H called last evening but the phone was off the hook so I missed the call. I’m guessing that he has my results from the liver scan and so now I can stew about that until next time he’s in his office making calls or at least until I see him on Monday.

I did manage to get my bone scan appointment moved to Monday as well. Unfortunately Jessica can't come to the city with us that day so we will have to make another trip in after all. She flies back to Korea on Saturday.