Medical Mystery Tour

Get a cup of coffee, tea or a glass of wine - this is a lengthy post.

Well...where to start. You may have noticed it's been quite awhile since my last entry. One reason is I was feeling so well that I was having a hard time thinking of something to write about - who knew there would be so much pressure in having a blog about yourself? Anyway, on Wednesday, April 30, I went for a Herceptin treatment and felt fine, left there and went to the grocery store, came home made lunch and then it was all downhill from there. In the mid-afternoon, I started having some chest pain and because I can't think of another way to describe it - my throat felt "full". I took some anti-naseau medication and took to the couch. By about 9:30, the pain in my chest was quite intense (but not like heart attack chest pain - I've been trying to describe the pain for a week now and can't quite put it in a way that sounds less scary) so I then took a Percocet. At midnight, I woke up with a very itchy foot and thought I was having an allergic reaction to something so I took a Benedryl and went back to sleep. When I woke up in the morning, I thought something might be wrong and asked Charle if my eyes were swollen. His response was "I think you need to call the doctor."

By the time I talked to someone at the clinic, my temperature was at 100.6 and my eyes were getting worse. My nurse Jean told me to go to the emergency room. This photo was taken when we got to the emergency room at about 9:30 in the morning. The Attending doctor identified my condition as a drug reaction, even though I hadn't taken any new drugs. My oncologist, Dr. Muss, came in at about 11:00 and was very perplexed because allergic reaction/rash (by now I had red blotches beginning to appear at various spots on my body) is not a side effect of any of the drugs I am taking. A nurse arrived to access my port, take a blood sample and inject 50mg of Benedryl (and I now know the rush a Heroin addict must feel - I've never gotten so high so fast). Because I'm a chemotheraphy patient and my temperature was above 100.5, they had to take a blood sample from 2 different places - one from my port and then one from my arm, which as usual, took 2 people 3 tries..... Once this was done, Charlie went to work for a while and they moved me to a private room to sleep off the Benedryl and await the results of the blood tests.

Then mid-afternoon Elizabeth, the medical student from the Oncology/Hematology floor came in to tell me I was being admitted. Next came Dr. Plank from Oncology to tell me that my blood tests had revealed that I Neutropenic - which means the number of cells called neutrophils in my white blood cells was too low. Neutrophils are a type of white blood cell that fights infection. Having Neutrpenia means I had to be in a room by myself and keep the door closed at all times. Meanwhile, the rash is spreading to more places on my body - my legs, feet, arms, chest and back by now were pretty well covered with red welts, my lips were swollen and I was very itchy. Once I got to my room, I was visited by the Oncology Fellow and then a doctor from Infectious Diseases (just to be sure they said). I started receiving IV antibiotics, and would continue to recieve 2 different types 4 times a day for the next 5 days. Overnight, my hands and wrists became so swollen that I had to remove my hospital idenfication braclet and couldn't interlace my fingers - a intense itch accompanied the swelling. Our hospital here is a teaching hosptial, so of course, Friday morning brought a large gaggle of medical students to view "the rash". Dr. Plank told me it was official - I was a medical mystery!

By Saturday morning, the rash and swelling was subsiding, but my white blood cell count was still low and I was also told I was anemic and there was some talk of a transfusion, but in the end they figured I was young and healthy and didn't need to do that. I was given an injection of Neupragen which is similar to the Neulasta injection I received after my first chemotherapy. Dr. Muss explained that Neulasta is much stronger since it has to work in the body over 10 days, but the Neupragen is a daily injection and I wouldn't have the same painful side effects. I received a Neupragen injection on Saturday, Sunday and Monday.

Sunday evening at about 6:00 I asked for a couple of Tylenol for a slight headache and by about 7:00 I had a fever, red and burning ears, itching hands and feet - all common symptoms of a drug reaction. This meant two more blood cultures had to be drawn, and I had to stay in the hosptial for at least another 24 hours. Finally, the good news came that my white blood cell count was up and I would go home on Tuesday.

Of course, there was just a little bit more drama before I could get home. By 2:00 I was all processed and ready to go home, just waiting for Charlie to call me when he was leaving the office so I could meet him out front and the vital sign taker arrived. I told her I was going home, but she said as long as I was still in the room, she had to take my vital signs - and I HAD A TEMPERATURE. Fear hit me - after 5 days in the hospital, I wanted to go home. She told me she'd have to tell the nurse. Meanwhile, Charlie called and I attempted to leave, but saw the nurse in the hallway. She took my temperature - in both ears - and get this - each ear provided a different temperature. Off we went to Dr. Plank, who said he didn't think I needed to stay, but he wanted to call the Oncology Fellow just to be sure - he termed my temperature interesting and sent me home with a 7-day perscription for an antibiotic. So even on the way out of the hospital, I continued to be a mystery!

My Herceptin treatment for this week was cancelled, and I'm scheduled to receive my 4th and last chemotherapy treatment next week!

Thanks to my great friends who visited me at the hospital when I looked like an extra from a science fiction movie and didn't say a thing, and to all of you who called and sent cards - knowing you were thinking of me meant so much. Also, thanks again to my wonderful friends who made my quilt - I had it with me right from the emergency room and it made such a difference having the comfort of friends with me at all times - I have to admit, it was a little scary there for a while.

Chemotherapy Treatment #3

Three treatments down, one to go. We had another busy and successful day at the Vermont Cancer Clinic. I was, of course, wearing my official chemotherapy ensemble which has at its foundation the wonderful Believe shirt provided by my friends Rob & Paula. When Charlie called them after my first surgery he used the phrase “we just have to believe we’re going to win, just like the Red Sox” (or something to that effect, I was still in recovery wondering if I was ever going to be able to open my eyes and not want to vomit). Rob got on the Internet and searched for a Red Sox Believe T-Shirt and shipped one up for both Charlie and I. As you can see I have worn this same shirt to each chemotherapy treatment because I do believe I will be a long-term cancer survivor!

Started off with a quick line insertion for a blood test (still loving that port), a visit with Dr. Muss, my Oncologist, who reviewed the blood test results and said I was doing great. Back to the South Pacific Pod to take my pre-med’s, which include a 125 gm pill and 2 bags of IV medication. The massage therapist came by and offered a foot massage, to which I happily agreed. Finally started with my first bag of toxins at 11:30 and finished up the third bag at 2:30.

Dr. Muss’ nurse Jean stopped by to check-in and say hello.

My quilt was quite topic of conversation in the clinic. A number of nurses and patients came over for a look and were very complimentary – both of the quilt and the great friends that put it together. I watched the video before I left home, so I started the day with an extra dose of love!

Good News

That's right, I finally got some good news from a doctor this year!

A few weeks ago I met with a genetic counselor at the Familial Cancer Program with the Vermont Cancer Center at FAHC. My doctor referred me to this program because of the history of cancer in my family. When I met with the counselor, I learned that when two of more relatives in a family have cancer, the family has familial cancer. Familial cancer is sporadic and not necessarily due to the inheritance of a cancer-causiing gene.

Then there is inherited cancer, which means familial cancer results from inheriting a cancer-causing gene - this type of cancer is called hereditary cancer and can be passed on to future generations.

Due to my particular family history, the counselor suggested that genetic testing would be appropriate for me. A blood sample was taken and submitted for testing for BRCA genes, specifically BRCA1 and BRCA2, which if positive, can indicate a higher risk for breast and ovarian cancers.

As you probably have already guessed by the name of this post, my test results came back negative. Due to my family history, I still am at a higher risk that the general population for another cancer event (as opposed to a recurrence of the current cancer I am in the process of eradicating). Due to this higher risk, I will be working with the counselor to determine what the best course of action will be for monitoring and testing as we move forward once I'm finished with treatment.

Halfway Point

It's hard to believe, at least for me, that I've passed the halfway point in my chemotherapy treatment. I've had two treatments and since the drugs do their thing for about 2 - 3 weeks after treatment I figure I'm halfway through today.

I must admit that I feel extremely lucky so far that I haven't really had too much trouble with side effects, although the famous fatigue that I heard about has set in and I am really tired, which is one of the reasons I haven't posted much this week. I can pretty much get to about 1:00 in the afternoon and then I really have to slow down. I'm still doing 1/2 hour on the treadmill every morning - I think that consistent exercise has been one of the reasons I've been able to get through as I have - although I do feel like I may be speaking too soon since I do still have two treatments to go.

Yesterday was Herceptin day and I am still in love with my port. I went without the Lidocaine to see how it was, and had no problem and only 1 stick. I went out to lunch afterwards with my friend Andrea and felt fine, but later in the day I started to feel ill and by the time 7:00 came around - I was off to bed with a funky tummy and what felt like the beginning of a head cold. Today the head cold continues, and I'm not sure if it's a cold or a Herceptin side effect, which are flu-like symptoms. Other side effects I'm experiencing are tender gums and sore hands - hardly anything too horrible.

Thanks to everyone reading for your wonderful comments and continued support - I so appreciate everything!

The Plight of the Single-Breasted

You may think the decision process surrounding a mastectomy would be a difficult one, but it isn't really. You have cancer and you want to do whatever is necessary not to have cancer. If that's a mastectomy, then that's a mastectomy. After all, I was hardly worried about having to nurse a child at a post-menopausal 48. Although, in the spirit of full-disclosure, last fall I did decide I was going to embrace my cleavage and even bought a few new v-necked tops - quite out of character for me, as I spent most of my adult life ensuring I was wearing a top that did not offer a peep show. So much for that idea. But I digress and it's just the first paragraph.

Actually, the decision about what to do after the mastectomy has way more options than I would have thought possible and none of them conducive to my choice. I had to make the initial decision regarding reconstruction on that phone call with Dr. Majercik when he called to inform me of the necessity of the mastectomy - he asked if I wanted to do immediate reconstruction - if so, that would push the operation back a few weeks until we located a plastic surgeon. I firmly told him I wasn't interested in even thinking about that at this point and just wanted to move forward eradicating the cancer - now wasn't the time for vanity.

With apologies to anyone reading this who did opt for immediate reconstruction - I can't imagine why a person would do that. It's like pushing dirt under the rug - you don't see it, but you know it's there. Immediate reconstruction would have robbed me of the opportunity to emotionally and physically heal and meet the new me - a little bit more each day. It wasn't easy. My mastectomy scar is almost 10" long, and let me tell you, initially not very pretty. But by having physical therapy and massaging "the site" with vitamin e oil every day, I got to know this new part of my body and now when I see myself in the mirror I truly do see a survivor. I currently have no inclination to investigate reconstruction, even though both my husband and my doctor counsel that I may change my mind some day.

The other option is a prothesis - yes, I have a prescription and the insurance company will buy me one every 2 years and 2 mastectomy bras a year (or some such combination). Want to be boggled - search the internet to try to pick out a breast prothesis. Just do the search. I got 367,000 hits for "breast prothesis" and 59,500 for "post-mastectomy bras." One website listed 11 different types of prothesis - from silicone, to gel, to foam, to fiberfill. Yikes. But nowhere did I find a undergarment answer for those women like me who are perfectly content that this is now their body and would just like to live with what there is.

What's a girl to do? Well for now I've cut out the right cup out of all my very pretty bras and made them not so pretty anymore. After all, I don't want to spend the rest of my life squished in a sports bra do I? I've got a great idea for a website for build-it-yourself single-cup bra's, I just can't figure out how to make the bras. Any ideas - proposals - business partners?

I did find a website breastfree.org, that had a list of the positive reasons women decide against reconstruction and flatter myself that I'm a match.

• They're strong women who don't feel their breasts define their identity.
• They're confident women who know they can look great in clothes without showing lots of cleavage.
• They're active women who want to continue exercising without any restrictions.
• They're mature women who understand that love of spouses, friends and family isn't dependent on having breasts.
  

Wonderful Friends - THE MOVIE

For your viewing pleasure

Click on this two minute video of the day 14 of my Massachusetts friends got together to create a beautiful quilt for me which in their words is to "cover you or wrap around your shoulders during treatments to represent the friends who want to wrap you in their love."

Careful - it's a tear jerker....

Treatment Update

First treatment with port access today. Last week access was left in after insertion, so I wasn't sure what accessing the port would actually be like until today. I must say, it made everything so much easier. Just a quick prick and slight burn with the administration of Lidocaine for numbing and then insertion of the needle which I didn't even feel. A quick 10 minute process with no anxiety, no pain and no boo boo's! I must admit, never in my wildest dreams did I think I'd be singing the praises of having an "implanted vascular access device." I received my half hour dose of targetted therapy with no problems and was off on my way to the best medicine of the day - meeting my friends Becky and Cindy downtown for lunch.

I did experience a chemotherapy patients worst nightmare today - a windy day. I haven't really been covering my head much unless it's cold, but today since I was going out to lunch I decided to wear a hat - cute little newsboy number - and, yes, it blew off my head. After that I just gave up and went without cover - sometimes it just doesn't seem worth it to worry about it. Like I said to nurse Deb when she was worried that my bandage might show and I was heading out to lunch - it is what it is.